I hear ya…

Well, I got a few emails this week asking for an update since I hadn’t updated this page (so I guess I do have readers, I really do!!!). Because I can take a hint, here’s the latest.

I had my day surgery on Monday and it was day surgery – I came home at the end of the day, unfortunately not without a new stent. I knew this was a possibility but I was hoping to avoid it. Dr. Karian removed the large stent, but felt I needed to keep a stent in until we decide on our future plan because the ureter did not look like it was going to stay open without some help. It’s a lot smaller and less painful than the last one and by now I’m so used to having something inside me that I barely notice it. During the procedure Dr. Karian was able to scope, inject a dye, and take a few more biopsies. We all assume the biopsies will be scar tissue as the last ones were. The dye showed that the kidney and bladder are functioning just fine as long as the ureter is open, and the scope didn’t show anything new, just confirmed our thoughts that the ureter is being compromised by scar tissue near the bladder.

We still don’t have a new plan. I’ll be talking to Dr. Karian in the next week (after the biopsy results are in) to make some decisions. I think we are all finally in agreement that surgery is inevitable. I’d rather do it sooner and begin to put this behind me, but there is another school of thought that would prefer to take it slower and rule out all non-surgical options before cutting me open. There have been a few complications with the option of shortening the ureter and moving my kidney down into my abdomen. Apparently this is considered auto-transplant surgery. I’m the donor and the recipient, but because it is still transplant surgery and Mt. Auburn Hospital does not perform transplant surgery. I really don’t want to go elsewhere, though there are several hospitals in Boston that do perform this procedure so I won’t have to go to DC or Omaha, but I love my team at Mt. Auburn.

And because it just wouldn’t be me if there weren’t another monkey wrench to toss into the mix, when I was being admitted for my surgery the nurses immediately moved me to a private room. This is highly unusual for day surgery prep. There is one larger room where everyone waits to be wheeled into the OR and listens in on what’s going on with the surrounding patients. Then the nurse says to me in passing, “We’ll be taking the usual mersa precautions with you.” I looked at her and said “mersa?” She said, “You tested positive for MRSA – Methicillin Resistant Staphylococcus Aureus so we will all be taking contact precautions”. This was the first I had heard of this – I don’t even know who or when I was tested for it, but basically it’s a certain type of antibiotic resistant staph infection. I’m already allergic to Penicillin, which is the resistant antibiotic, so I shouldn’t really have too many problems because of it. They assume I picked it up during one of my recent hospital visits. It also most likely explains my toe infection – which didn’t respond to the antibiotics I took for it. (The good news is that it appears to be responding to the antibiotics I am on after my day surgery, so I might be able to avoid having that toenail removed – woohoo!!)

I don’t exactly know what the repercussions of MRSA will be and if it’s something that I’ll be able to get rid of eventually, but I do know that it means I get a private room whenever I’m at the hospital. I’ll get more info from the nurses next week and do my usual diligent online research. My break from Erbitux has given my side effects a chance to calm down (though my recent rounds of antibiotics wreaked havoc with my diarrhea). I’m scratching a lot less, the scratches on my face are healing and I haven’t had any new breakouts. Both Pat and I are sleeping better and I’ve managed to sleep through the night once or twice this week.

No fun stuff to share this week. It’s been work and hospital/doctor visits lately – no movies or any other entertainment either (I think that’s because we’ve seen all we wanted to, not because I don’t feel well enough to do anything). We have no travel plans for the near future, though we are hoping to get some skiing in before the season is over (or at least Pat is). We’ve been staying close to home on weekends and that’s where we’ll be for the next couple of weeks. If anyone finds themselves in the Boston area – give us a shout! I can usually stay awake for a few hours on weekends.

Dear Dr. Lange, Please excuse Jean from treatment this week.

She’s tired and cranky and not so fun to live with these days. Plus she’s been going to the bathroom a LOT and her skin looks flakey and irritated and she is scaring little children.

Sincerely,
Everyone she sees and comes into contact with on a daily basis

I got excused from treatment this week and I’d like to say it’s because I was such a good patient the past 4 weeks that they decided I could have some time off. However, the reality is that I showed up on Wednesday looking and feeling miserable and I don’t bother to hide things from these nurses – they always figure out the truth anyway. Turns out I was dehydrated and my potassium level was low so they gave me a nice saline IV told me to eat some bananas and sent me home. I got next week off as well, but that’s because I have my long awaited stent removal scheduled for Monday and it’s my unwritten rule to have only 1 procedure done per week. So my next Erbitux treatment is scheduled for Feb 14 – Happy Valentine’s Day and happy anniversary as this will also mark 1 year since I began this affair with Erbitux and the staff of Wyman 3.

The reason I was so miserable this week on treatment day was because of my visit with the podiatrist earlier in the week. Turns out I don’t have an ingrown toenail (yay!) instead I have an infected toe (boo!). The toe that he removed part of the nail from in October somehow became infected 3 months later. It was fine for the past 3 months, it really only got painful and red in the past 2 weeks. I called for an appointment as soon as it acted up. Right now the plan is 5 days of antibiotics, soak in Epsom salt every day and cover with iodine and a band aid for 2 weeks. If it doesn’t clear up, go back. It’s been 5 days. Almost done with the antibiotics (which have caused my diarrhea to increase back to almost double digits per day –not fun, and the reason I was dehydrated on Wednesday), and still doing the soaking, but its not feeling better. I’m hoping for a best case scenario here, but if this doesn’t work we are going to have to arrange to have the toenail removed (ewww….no strappy pink sandals for me this summer!!). I’ll keep you posted – even if you don’t want to know.

The second reason I got excused from the Erbitux was that I looked pretty beat up. The rash is back on my face and the dry skin has returned with a vengeance. I’m pouring on moisturizer as much as possible, but my skin just sucks it up and asks for more. On top of this, the itchiness has returned – mostly at night. I decided to outsmart it and wear gloves to bed so I couldn’t scratch. Well apparently I’ve figured out how to take the gloves off, scratch the itch, and then put the gloves back on all without waking up. My face currently looks like I got attacked by a very angry kitty. Instead I have to tell people that I did this to myself, in my sleep. Tonight we are going to try taping the gloves on so I can’t get them off. Somehow I think I’ll figure out a way around this.

The good news is that the stent removal is officially scheduled for Monday February 6. This time it’s coming out for good – no waking up to find a larger stent in place. The current plan is to remove the stent as a day procedure in the OR (so I’ll be asleep) and this will also allow Dr. Karian some time to inject a dye, see if the constriction has loosened up at all, and get a better idea of what the next step will be. We decided not to talk about this until we had seen what this stent had managed to do. I should be home by late Monday afternoon – armed with more antibiotics and pain meds.

Hopefully Monday will be my only day at Mt. Auburn next week. I’m looking forward to a little time away and some return to the daily grind of work.

Last weekend was a good escape for both Pat and I. We spent some relaxing time on the Cape – walking the beach and just clearing our heads and minds from all this stuff. I chowed down on a lobster without too many consequences and enjoyed some time next to the fireplace sipping champagne. It was good for both of us to get away from the daily pressures and trips to the hospital. We’re still trying to figure out how we can go on with our lives when we feel like we are constantly in limbo. I’m really hoping for a resolution to this kidney issue sooner rather than later – it’s hard to make plans when we’re not sure if I’m going to be able to travel over the next month. We’re back to taking this day by day - and this weekend looks to be a good one for chilling out at home with a good book and my Tivo.

The results are in

And they are good. We met with Dr. Lange on Thursday during my Erbitux treatment and while I wasn’t as alert as I would have liked thanks to the benadryl, decadron, and kytril I do know that he said the CT scan results were “unremarkable”. In layman’s terms that means good – no visible sign of cancer or tumors. This is good news – and we are on our way to a milestone. This scan was 15 months since my last surgery – my next scan will be in 3 months and will mark 18 months since my last surgery. During my 6 year battle, I’ve never gone more than 18 months without a recurrence so we’ve got a lot riding on the next 3 months and they look to be busy months for me. (More on that later).

Our appointment with Dr. Lange was good – after delivering the CT results and filling me in on my latest blood work - all levels are within normal or acceptable range, we both remarked that it appears the Erbitux is doing something. We still aren’t doing a happy dance, but I think we are beginning to choreograph one for our next sit down in April. What this also meant was that my taking a few breaks from treatment to travel and catch my breath did not seem to have an impact on the effectiveness of the Erbitux. Also good news and something I will remind him of when I want another few weeks off from treatment.

He was surprised to see that my face is clear, no visible signs of the rash. I said that’s because : 1)the rash I do have is in my scalp and you can’t see that, but it’s there and it’s annoying; and 2)I have other side effects instead – mouth sores and a lovely ingrown toenail. We both got a chuckle out of this. I manage to get all the side effects that are at the bottom of the possibilities list. We both silently acknowledged that I am anything but typical – special is how we would phrase it. I’m having the toe looked at next week and there isn’t much to do about the other side effects so I just hang in there and deal. It’s just important for them to know that these side effects are present.

Now on to the not so great new – an update on the kidney front.

I spoke with Dr. Karian this past week and we began to make a plan. First we discussed the current stint. It’s not doing what it’s supposed to, it’s causing me pain and discomfort (and a potential arrest in Arizona last month…), and most importantly is affecting my quality of life. Once he understood all of these issues he agreed to remove it in the next week or so. He will be reviewing my latest CT scan to see what it tells him about the adhesions and scar tissue that appear to be root of all my trouble. Because of the size of the stint the best place for removal will be the operating room which means a day surgery and anesthesia. It also means he will be able to inject a dye to see exactly where the constriction is, do balloon dilation and get another view of what’s going on inside the urether. Once it’s out he will not insert another one. Instead we’ll wait about 2 weeks, do an ultra sound and see if the urether has constricted and the kidney has backed up. Both of us are fairly certain this will happen. Now the bad news.

This means I need to have another surgery in the near future. It won’t be anything like what I’ve been through so far only a few hours in the OR and hopefully less than a week in Mt. Auburn. There are several options we are weighing and hence the reason Pat and I have been anti-social lately as once again we are in research and decision mode. When I had my major surgery in November 2004 one of the reasons I chose not to go to the specialist in Omaha and stayed with my team at Mt. Auburn was because Dr. Karian said he would save my bladder, and he did. We knew that chances were I would have other problems down the road and we all hoped it would be further down, but the time is here now. Fortunately of the 3 options I have, it was pretty easy to choose and I am able to go with a less drastic procedure.

The problem is that scar tissue and adhesions from previous surgeries has constricted the urether from my right kidney and is causing the blockage. To simply remove the scar tissue is not an option for several reasons. Artificial urether do not exist because they cause kidney stones. There are options to re-build urethers using excess bladder (I don’t have any excess) or excess ileum (I may have some, but I am not involving this part of my intestines in a surgery when I finally got my diarrhea to a manageable 5-6 times a day). This leaves us with 3 more invasive options. Fortunately Dr. Karian has operated on me twice and has discussed this with my main surgeon Dr. Nauta, so I’ve got the best doctors on my team and more importantly on my side.

The first option we ruled out because it involved my left kidney and urether, both of which are currently free from scar tissue and we’d prefer to keep it that way.
The second option is to remove the damaged part of the urether, reconnect it to the bladder and kidney and shift the right kidney down, into the abdominal cavity. This is potentially an area where my cancer could and has recurred, but since all is clean there right now it seems like our best bet. If the cancer does recur there at least I will have gotten another 6 months or 6 years out of the kidney. Not a bad deal considering…
Option 3 is to remove the right urether and kidney completely. Though this will eliminate all problems like the ones I’ve been dealing with for the past four months, it will create a whole new set of issues. Dr. Lange admitted we’d have to adjust the Erbitux dosage and possibly consider stopping treatment all together. Hopefully option 2 will work and we won’t even have to consider option 3.

Now there is still a lot to be done/discussed and planned before this surgery. I have no tentative dates in mind yet – and it could be avoided if the balloon dilation and current stint have managed to loosen up the constriction enough for me to function without pain and infection. So keep me in your prayers and hope for the best, though I can’t tell you exactly what that means. I’ll keep you informed of our decisions and important dates should there be any.

Hopefully the above will give you a picture of why the past few weeks have been really rough on Pat and I and why we’ve sort of crawled under a rock lately. When we need to focus on decisions like this we like to do as much research as we can before saying anything to our friends and family. We know the questions we need to ask and the worst case scenarios we need to review. It’s really a never-ending process for us and there are periods, like now when it is overwhelming and I just need a few days of good cries, “why me’s” and lots of junk food. We are trying to see the bright side of all of this, but right now we’re taking it day by day – some good, most not so good – every little thing that goes wrong (did I mention that our car wouldn’t start on the day I needed to get to the hospital for my CT scan and there wasn’t a cab to be found in Somerville…) feels like someone stepping on my ingrown toenail. I realize no one is out to get me, but there are days when it certainly feels that way.

I know there are many of you who read my posts and don’t leave comments and that is fine with me – I do the same on several PMP blogs that I read. I’ve never put a counter up on the site because frankly I’m not doing this for numbers. I just want to say thank you to all of you for the prayers and support and caring words – I feel them and I turn to them when I’m having a bad day. Your friendships mean a lot to me (and Pat) even if we don’t necessarily see as many of you as we’d like.

And that’s all for now. It’s 2AM – despite numerous sleeping aids I’m wide awake thanks to todays, or I guess now its yesterday’s treatment. Hopefully typing up this entry was the therapy I needed to clear my mind and get some sleep.

Quiet Week

Not much to say and somehow I managed to miss posting for a week. Guess that’s because I was busy last week with non-cancer, non-treatment related stuff. I didn’t have an Erbitux treatment because I was traveling, so I had a little bit of energy while doing my business in San Francisco. I am still dealing with the daily pain from my stent, which I have now realized is no longer stent pain, but rather kidney pain, meaning the stent is not doing its job. I have a call in to my urologist to sort this out. The stent is due to come out next week, but before we plan that, I want to know what the next step is. If this larger stent isn’t keeping the kidney from blocking, then we need another solution. I’m hoping he isn’t going to tell me he’s got an even bigger stent he wants to try!

Anyway, one round of treatment after 3 weeks off wasn’t too difficult to handle. No real side effects to report and according to everyone who saw me last week (many of who had not seen me for over a year) “I looked good”. I guess dropping 45plus pounds agrees with me. Not to mention the lack of a rash on my face and my overall good attitude. The fact was that night I was feeling good. Granted I had taken a few Demerol and a glass of wine to deal with pain issues, but other than that I was feeling like myself, whoever that may be these days.

I had a round of treatment this week. Some issues with sleeping last night and appetite today, but nothing major to report. I am scheduled for my 15 month CT next Tuesday and I will get the results and my next Erbitux treatment on Thursday of that week (January 26). I have an appointment with Dr. Lange and will talk with him about a few things – a new drug we’ve discovered, how he thinks the Erbitux is working, what else we can do to defeat these side effects, etc. I’ll probably also squeeze one more treatment in the following week before having to take a break. I’m approaching the one year mark of being on this drug. Dr. Lange thinks its doing the trick. I’m still not convinced.

The nurses and I are hopeful that the once a month injections of Sandostatin are helping bring the diarrhea under control. I am thrilled to be down to 5-6 trips a day, they would like to see 1-2, but after almost a year of 12+ a day, 5-6 is really not that bad. It’s all in your perspective. I’ll continue on the monthly injections while on the next rounds of Erbitux and if we see an increase, we can change both my Sandostatin dosage and schedule (to every 3 weeks) which is fine with me. Anything is better than twice a day.

No trips on the horizon for me –either work wise or personal. Need to resolve my kidney issues before I feel comfortable going anywhere.

And that’s all that's on my mind for now.

Complaints for the week

I figured it was time I was honest about the title of these entries. Why put up something cute to catch your attention only to spend the next 3 paragraphs listing my latest complaints. Forgive me, it’s been a long week and I’m really quite tired. However, I do want to bring everyone up to date on where things stand.

Tuesday I had my first Erbitux treatment of 2006. Woohoo!!! One down and only an infinite number left to go. We don’t know how many more of these treatments I have left – until they stop working seems to be about the only answer I can get from my docs. And they are right. I will be on this drug as long as my body can tolerate it. Anyway…back to Tuesday. I’m still moving at a slower pace these days thanks to my new and improved (and LARGER) stent. It still hurts. Someone asked to see my incision the other day. I said,” there is no incision.” “Well, how do they get it in there. “ I just looked at him and said, “How do you think?” “Oh…” realization set in. I am grateful that I was under general anesthesia when it was inserted, and I hope to be under when they take this one out as well.

Back to the Erbitux treatment. I told the nurses that in terms of side effects from the drugs, I was feeling OK. The Demerol was helping the diarrhea, so along with the Sandostatin, my current bathroom trips are down to 5 – 7 per day, this does not include the usual trips for simple things like peeing. Those trips are up to over a dozen a day, once again thanks to my new friend “stent”. If it’s not one end, it’s the other…I must have looked a little haggard to my nurse because she pops me on the scale before doing anything and we discover I’ve dropped 5 pounds since mid-December. Not a good thing. I have no appetite, even when I was off the Erbitux, I didn’t feel like eating. So they stocked me up with all those lovely caloric drinks they give to the radiation patients. So far I haven’t had the stomach for them. But I am going to try some milkshakes and pure fat ice cream!! Yummy…ooh I think I hear my stomach growling. Phish food here I come!

Sorry, another tangent. Erbitux, that’s what I’m supposed to be telling you about. Well after the scale, they accessed my port, hooked up my benadryl and off to sleep I went. Then my tiny little bladder got full, so I got up, relieved myself, and tried to fall back asleep. No luck. So I zoned out to my iPod, flipped through my guilty pleasure magazines, and waited for the end. Mid-way through my treatment we decided to do my monthly Sandostatin shot. Went off just fine, but about half and hour later I got nauseous. It was bad enough that I asked for something. Popped the Zofran and the nausea subsided somewhat. We’re still not sure if it was the Erbitux or the Sandostatin that caused it. Not a side effect I ever experienced before.

We headed home after all was done and I immediately fell asleep on the couch. Woke up hungry about 2 hours later. Ate a decent dinner, which alas sent me running to the bathroom and upped my bathroom trips for the day to almost 10! Then zoned out until about 10pm when I headed to bed. Took a benadryl to help lull me off to sleep. About 2 hours later when Pat joined me, I took 2 sleeping pills since I was still awake. 2 hours after that I watched whatever had been Tivoed that day, tried to sleep on the couch, played video games, sent an email to my boss at 3 AM saying I didn’t think I would make it in on Wednesday since I had yet to fall asleep. Tried my bed again. Woke up Pat to tell him I couldn’t sleep. Went back to the couch and counted sheep. Finally fell asleep somewhere between 5 and 6 AM. Pat woke me at 8 and got me to move back to the bed where I slept soundly until noon. Whew…what a night. Haven’t had one like that in a while and would prefer to avoid another one for now.

Managed to work from home for the rest of the day and realized that my body just doesn’t do mornings anymore. I seem to get a burst of energy around 4pm that keeps me going. That’s why I’m still in my office at 7:45 on Thursday night. Not because I’m so dedicated, though I am, but mostly because my fingers keep going over the keyboard and I keep coming up with stuff that I should get done while my eyes are open and my mind is functioning.

I promise to try to be in a better mood next week. No Erbitux treatment because I’ll be in San Francisco for much of the week, so as long as the stent pain remains under control, I should have a pleasant entry for y’all.

Merry Christmas

Just a brief entry to wish everyone a happy and joyful Christmas. I'm feeling pretty well and am looking forward to a relaxing holiday weekend.

I didn't have an Erbitux treatment this week as I was still feeling sore from last weeks stent placement and I decided I didn't want to feel itchy and deal with side effects. I did talk to Dr. Karian and he has scheduled my stent removal for Wednesday, December 28. He will also use this opportunity to poke around and try to find some answers for us. Right now we are not anticipating an overnight stay, just a simple day surgery. We've heard those words before, so we are prepared for whatever comes our way. I'll post an update next week after the procedure.

Stay warm. Be Happy. Enjoy some time with the family. Be Safe.

Jean & Pat

An Anniversary

This week marks the 6th anniversary of my diagnosis although technically I didn’t know I had cancer until a month after this, but the initial surgery and tumor removal was on December 15, 1999. We don’t plan to “celebrate” this day, but we will acknowledge it and the fact that I’m still here. Fortunately it’s also the birthday of our youngest nephew, Keagan so perhaps we will have a cake on this day anyway! A lot has happened in the past 6 years and some of it has even been good.

I do have a little bit of health related news to pass along. Remember my urinary tract infection and subsequent kidney blockage which resulted in a brief hospital stay in September? Dr. Karian removed several polyps during that procedure which should have unblocked the kidney, however I’ve had two ultra sounds done since then and they both showed that my kidney still was not draining properly. We’ve been watching and waiting, trying to see if the problem would resolve on its own, but it hasn’t. I’ve become accustomed to the constant nagging pain and have finally gotten both Dr. Karian and Dr. Lange to talk and agree that this was not being caused by the Erbitux. I read through all the fine print on the Erbitux literature and found that kidney failure was a possible side effect. However the ingrown toenail I had removed in October was probably a side effect of the Erbitux. Just picture me shaking my head at this point….

Back to my point. I’m having an IVP (intravenous pyelogram) done on Tuesday. This test has been ordered by Dr. Karian to get a clear picture of what is going on between my kidney and the ureter. We don’t know what the possible options are though we’ve done some speculating. I assume he could place another stent to hold the ureter open, but that’s not a long term solution and at this point I don’t want any more temporary fixes. The IVP isn’t invasive (except for the night before bowel prep that I have to do – warning, do not call me on Monday night!!). And considering the amount of pain I’ve been experiencing lately, I suspect I will hear back from Dr. Karian sooner rather than later. I’ll post an update later this week when I have news to share.

I did make an executive decision and cancelled my treatment for the week because I think the IVP is enough to deal with in one week . Besides my skin is drying out, flaking off, and breaking out, so a week off will give me a chance to rehydrate, exfoliate and clear up. Now that winter is officially here (whew…only 7 inches in Somerville on Friday, though a snow storm that included thunder and lightening was something I never experienced before) I’ve stocked up on my moisturizer and lip balm. I won’t complain too much about the weather yet – there’s plenty of time for that over the next few months.

I’m on pain meds right now and that seems to be affecting my ability to put 2 sentences together tonight, so apologies if I appear to be babbling. Until later…

From 80 degrees to 30 in 6 short days

Awoke to an inch of snow this morning – the first I’ve seen this year, though some fell a few weeks ago when we were out of town. It continued to flurry all day but no real accumulation. Good, because I’m not ready for winter just yet. We did break out the hats, gloves and scarves, not to mention the shovels and ice b gone. I put my boots on to go out and said to Pat, “last time I put these on we were in Costa Rica – wait that was only just last week!” What a difference a week makes.

We are all unpacked and the summer stuff has been put away…sigh. Costa Rica is now a mere memory, but a good one that we won’t forget anytime soon. My pictures from the disposable cameras didn’t come out very well, but I’ll post a few here. I just got the first 395 pictures, which includes the last ones taken with my camera. I will whittle them down to a more reasonable number before sharing because even I got bored after the umpteenth monkey picture – not that they aren’t adorable critters to look at.

I’m glad we had Sunday at home to get the laundry and stuff under control because by Monday, things were back to normal. We both returned to work and spent much of the day wading through email because for the first time ever, I didn’t even peek at my mail the entire time we were away. I also resumed my Erbitux treatments. My one treatment on Tuesday really knocked me down. I didn’t sleep during the treatment and didn’t sleep much that night either. Felt wiped out on Wednesday, the usual inability to eat/drink, but by Wed night my appetite was back and I slept soundly. Good thing too because I was up early on Thursday to get down to NYC for a conference. Returned home late Thursday night and by Saturday my defenses were compromised enough and the cold Pat had battled all week hit me. Just the usual head cold – annoying and exhausting, so I’m drinking juice and taking my vitamin C. I’m scheduled for another treatment on Tuesday, but if I’m still sneezing and congested I will probably postpone for a week.

That’s all for now…

Home again…

I slept for 12 hours last night and I think I could sleep for 12 more tonight, and I just may do that. I didn’t have a whole lot of free time this past week and I didn’t spend more than 10 minutes outside my hotel until Friday. Four straight days of meetings, working, and the dreaded networking is an awfully long stretch. Though my business trips are usually longer, they are almost less exhausting because at least I have some down time even if it’s when I’m on a plane or a bus. I didn’t have time to answer email, so to all of you who wrote to me last week – one of these days I’ll catch up!! I did get to talk to Pat each day because he provided me with my daily wake up call. Thank you honey!

Friday I finally got to sleep in a little and then took a nice long work to our San Francisco office. And Saturday I came home where I collapsed on the couch with a pizza and my husband. I am more than ready for a vacation and there just might be one in my future.

I had treatment on the Thursday before I left for San Francisco so the side effects kicked in a little during the week. Mostly it was fatigue but also the rash both on my face (not on eyes!), and in my scalp. My hair feels like straw – and that’s without any color changing chemicals. I found my first few gray hairs over the past month. I know there are some people who don’t believe I haven’t had grey before now, but I really didn’t. Kyle, my stylist, will back me up on this. I colored and highlighted my hair because I liked the change not because I was trying to hide anything. So now I may have to go back to coloring but for an entirely new reason. Or maybe I’ll just let it go natural. When my hair grew back after chemotherapy, it came back exactly the same – poker straight and mousy brown. 5 years and many other chemicals later my hair has become wavy – not curly, but enough of a wave so that I have to actually make an effort to get it straight. My reason for bringing this up is that I blame the chemicals for those grey hairs I yanked out, not stress or age, just the drugs.

With the change in weather (read: drop in temperatures) my skin is getting drier and flakier so I’ll be going through my rotating supply of facial moisturizers. Somehow I suspect its going to be a long winter here on the east coast. I guess I’ll have to find someplace warm to go and hide out for at least a little while. Or maybe I can convince the bosses that the time has come to open up a Hawaii office.

If I were a deejay, I’d have been fired by now

Sorry for the “dead air” or blank page. Good intentions and finding the time to actually fulfill these intentions are two different things. I’ve been home from Europe for a week and half, but already packing to leave for San Francisco. During this time I also had 2 Erbitux treatments and worked the other days. Trying to make sure I follow up on all the promises I made in Europe was top priority, but I also had to prepare for the meetings I’ll be having next week. It’s a never ending cycle.

We met with Dr. Lange last week before my first treatment just for our quarterly check in. He was cautiously optimistic over my latest CT scan results. No sign of disease – 11 months after surgery. He thinks we must be doing something right, which means the Erbitux since I’m not doing anything else. But he also noticed how excited I was to have been able to make that European adventure (and was impressed at how many places I was in such a short period of time- said that itinerary would have a healthy person exhausted…). So we agreed to continue the plan of me deciding how many weeks of treatment and how many weeks of breaks in order to be able to continue work and travel. On this note, I just had 2 weeks of treatment and now I’m taking 3 weeks off for more travel. I’ll start more Erbitux after Thanksgiving.

These two treatments went off pretty smoothly. I’m still waiting for the side effects to appear – a few spots on my eyes and some mouth sores are all I’ve experienced so far. I have a feeling a bone tiredness that I can’t seem to shake. That may be more from everything I’ve been doing to keep busy more than the Erbitux, but it’s probably a combo of everything. Falling asleep between and 8 and 9 every night isn’t that bad, but next week in San Fran if I fall asleep at 8 east coast time, that’ll only be 5 their time so I guess I need to perk up a just a little for the next week. At least on this trip, I know that I won’t be taking any 5 hour bus trips across the countryside, unless I get bored and decide to head out to the Russian River Valley for some wine.

I have lots more to write, but I need to get moving and get a few things in order before hoping on another plane.

Back in Boston

Sorry, no travelogue this week. The remainder of my trip was relatively uneventful – at least no more cancelled flights, bus rides, or adventures in foreign countries. Latvia, Lithuania, Estonia, Portugal and Germany: five countries in 9 days - a whirlwind trip. I was really glad to get to Germany last Saturday and be able to spend more than 2 nights in one place. I spent lots of time relaxing, exploring and shopping. Munich is a beautiful city and I hope I can go back when I am less exhausted and able to enjoy a bit more of what they have to offer. Beer and spaetzle, what more can one ask for? Despite cuisine options like this, there is no place like home. Jet lag isn’t too bad; though I’m sure the next few nights will have some sleepless hours. I was very pleased with the way the trip worked out. The business side of things went very well; I met some people I had been working with for 6 years via email and was finally able to put faces to the names, and came home with lots of work to be done. Personally I felt pretty good throughout most of the trip – a little tired, but all the side effects that I was afraid of dealing with in a strange country did not manifest. I was careful with what I ate, got as much sleep as I could, and generally tried to take care of myself. I am glad I took the chance and look forward to my next trip.

For now its back to the usual – an Erbitux treatment on Thursday, a quieter weekend where I can catch up on sleep and relaxation, etc. I’ll have one more treatment next week, and then have a few weeks away from treatment once again while I do some additional work related travel. I meet with Dr. Lange on Thursday and we’ll review my blood work, CT scan again (there was nothing seen on it – just want to hear him tell me all is fine), and decide if the current Erbitux schedule is working for him as well as it is working for me.

And now, I’m off for a nap.

First the good news

Got my CT scan results yesterday. They were so unremarkable that my oncologist just had one of his nurses call me and read the report. Nothing seen on the scan – official report from the radiologist “No apparent sign of recurrence”. Good news, though not unexpected. Next scan in 3-4 months depending on how many rounds of treatment I fit in between now and then. I’m off for 2 more weeks, and then have 2 treatments in late October/early November, before another 3 week break for more travel on my part. This brings us to Thanksgiving, so I’ll start up the first week of December. Based on what we are seeing from these last 3 doses, I think the maximum weeks I can tolerate are 3 before needing at least a week off. But I’m getting way ahead of myself. Apologies in advance for my whining in the next paragraph – but I can’t have you all thinking that this Erbitux stuff is a piece of cake (smile…I know you don’t)

When I have no side effects rather than crowing about this, I’ll just not say anything. It’s just better this way. Not that I believe I bring these things on myself, but after my comment last week about how good I was feeling, I was hit with some nasty pimples and rash on my eyelids. I have since lost most of my lower lashes again and was pretty uncomfortable all weekend, although they look and feel better today. Hot and cold compresses did nothing. Neither did antibiotic eye drops and ointments. I just had to wait it out. I actually had some problems getting my eyes to open and focus in the mornings – apparently these things get a little crusty overnight which makes it difficult to open in the morning. Then once they were open, they didn’t exactly focus immediately. At first I thought I forgot to put my glasses on, then I realized I had them on and still couldn’t see – momentary panic, and then things started to become clearer a little at a time. I’m hoping they get better and the pimples are gone by this weekend. My skin also dried out and so I was off to find yet another new moisturizer. I had a long conversation with a cosmetologist at a specialty shop and we found a new toner/moisturizer combo that I am trying. (Read: is working too, but I don’t want to actually admit this yet…)

I leave for Europe (Latvia, Lithuania, Estonia, Portugal and Germany) on Saturday and will be gone for 10 days. Poor Pat will be sitting this trip out, though had we planned better he could have met me for a long weekend in Portugal. Next time – definitely!! I’m excited and nervous. It’s been over a year since I’ve attempted a trip like this – and hopefully will not be another year before the next one. I have a free hour here and there in each country, so I may have a chance to see something other than the inside of the hotel and the office, but that’s only if all of my flights are on time (ha!!). Assuming all goes well and the free (!!) broadband in my hotel in Estonia works, I’ll post from there next week. Otherwise this page will go blank and I’ll be back sometime during the week of October 24.

Very quick update

It’s late and I know if I don’t post something tonight, tomorrow the main page will go blank so here goes.

I really have nothing to report. It’s my first week off from treatment. I had a CT scan on Monday. I don’t have the results yet, and probably won’t have them until next week. I also still don’t have the results of the ultra sound from last week. I need to call my doctors, but I’m at a conference and don’t feel like playing phone tag. I’ll make the calls next week before my Europe trip.

No new side effects to report. I’m feeling pretty good actually – just tired.

Off to bed for me.

3 down, 3 weeks off

Treatment went off without a hitch on Tuesday. I slept a little and was awake a little more than I would have liked, but that is bound to happen sometimes. I have been very (knocking on wood as I type this) lucky with side effects this round. I have had a few little spots on eyes, some in my scalp that really only seem to bother me when I sleep, dealt with some yucky mouth sores for a day last week, and the usual diarrhea increase – really nothing to complain about considering what I could be suffering through. My face looks good – even my oncologist commented on how clear it was. So far this week, all I have is a little dry skin on my fingers, almost not worth mentioning, but then what would I write about if not the litany of side effects I’m experiencing. And, I keep forgetting to mention, my eyelashes have grown back almost 100%. Even with the few irritations on them right now, the lashes don’t seem to be falling out.

Though I have 3 weeks off from treatment, I can’t seem to escape the hospital for the same amount of time. Later this week I have an ultra sound to make sure the kidney/ureter/bladder are all working properly. I don’t anticipate any problems – they all seem fine to me. Next week I have my quarterly CT scan. We’re all just assuming it will be like the last several – nothing noteworthy. The noteworthy scans will be the next one I have (because of the change in my Erbitux schedule) and the one I have in May/June 2006. I won’t lose any sleep over this next scan, and probably won’t even call in for my results for a week. I’ll post here as soon as I hear, but don’t expect that before October 11 or so. I’ll be away for several days after the scan and don’t feel the need to play phone tag with Dr. Lange to get the results.

I’m approaching the one year anniversary of our visit to Dr. Loggie in Omaha, where we finally, after 4+years, got an expert to admit that we were doing everything that could be done. Had I been diagnosed about 6 months later, I think I’d be in a different place because it was during early 2000 that information began to be published on appendix cancer. In talking to a few others in similar positions lately, it was pointed out to me that Dr. Sugarbaker (the “expert” on this disease) only uses the label PMP (pseudomyxoma peritonei) for cases of DPAM (diffuse peritoneal adenomuscinosis) the less aggressive variant of this disease. Since I appear (according to Dr. Loggie and Dr. Lange, who doesn’t really like to use labels) to have PMCA (peritoneal muscinous cystadenacarcinoma) I should not be using the diagnosis PMP, but rather the more generic appendix cancer. This really makes no difference one way or the other no one has ever heard of either variant – it was just something I was thinking about.

I’m gearing up to begin a bunch of travel that will have me out of Boston for about 50% of the next 2 months. First a few days in NYC for a conference, then home for a week, then off to Europe for my first business trip in a year. I can’t wait. Latvia, Lithuania, Estonia, Portugal, and now I’ve added a few days in Germany for pleasure. Don’t be too envious – I hit all of those countries in 9 days – some I’ll be in for less than 24 hours. Not much sight seeing going on. I’ll have about a week to recover before I head out to San Francisco for a week, then home for another week before a much anticipated and needed vacation with Pat. He won’t see much of me these next few weeks, but hopefully will be able to join me on a few trips next year.
And now I must get back to the job that requires me to accumulate all these airline miles.

2 Down, 1 to go

This weeks treatment went off without a hitch. Showed up at 1 pm was asleep by 1:15 and pretty much had to be awakened at 4 and told to go home. I actually slept pretty well Tuesday night, though I was awake early on Wednesday morning. Worked all day and am ready for a good nights sleep tonight. Not many side effects this past week, just a few of the usual pimples on my eyelids, no where else yet. Also the Sandostatin seems to be working and keeping the diarrhea under control – at least to single digit bathroom trips each day. I’ll take it.

The stent finally came out last Thursday. Wahoo…what a relief – immediate relief actually. It took a few tries to get it out, but it’s incredible how much pain and discomfort a piece of penne pasta (which is pretty much what the stent resembled) can cause. Dr. Karian and I talked a bit more about the pathology report on the 10 (yes, the actual number was 10, not 2) polyps that he removed from the inside of my ureter. They were all benign and the lab called them inflammation. No idea of the cause, where they came from, what they were, no idea whether or not they are going to come back again, how to keep them away, etc. Dr. Karian wants answers. I do too, but I know chances are that I’m not going to get them. Just hearing the word “benign” was fine with me.

Dr. Karian spent some time during the initial procedure making sure there were no other polyps or unusual tumor like substances in my ureter or kidney, and he said the bladder looked great. This was good news for me – I haven’t experienced any problems (other than this little blockage) and the bladder has always felt fine to me. I have to have one more ultra sound to make sure everything is working properly and that the kidney has gone back to normal size. I’m off of all pain meds and down to just my twice daily Sandostatin injections.

Only one more dose of Erbitux this round, then a CT scan, then some travel, then back to the beginning. We’ve given up on the 8 doses per round and for now are just going to fit in doses between my travel schedule.

Just a little travel this past weekend – down to Greenwich, CT for the christening of Keagan Mack Gasbarro, our latest godchild. Pat had already spent the previous day in NYC, so after our familial obligations we headed to Tarrytown NY visited Kykuit (the Rockefeller estate), then on Sunday off to Sunnyside (Washington Irving’s home) and Lyndhurst (a gothic mansion) and a leisurely drive back to Boston. This weekend the goal is to take it extremely easy – perhaps we’ll even stay home.

All for now…

Back to basics

I went to the hospital yesterday feeling much better than the previous few weeks, despite the presence of the stent in my ureter. It was supposed to be removed last Thursday, but I had to choose between a vacation and having the stent out. Guess which one I chose?? So Pat and I spent a nice 3 day weekend in Quebec, eating, wandering around, taking pictures, getting a massage, did I mention eating?, drinking, visiting museums, and sleeping (thanks to all the eating and drinking). I had to use a little more pain medicine than I anticipated, but it seemed to help in terms of being able to enjoy some rich food and wine and not have to spend quits so much time in the bathroom so I’m not complaining, and at least we were able to enjoy ourselves for a few days. Construction at Logan increased our trip by about 10 hours and it would have been quicker to drive there, but eventually we made it to our destination and back home again.

Treatment went off without a hitch. I slept through most of it and so far today am not suffering any new side effects. I’m back to my very basic diet of bread and water for today, but hopefully that will wear off by dinnertime. I signed on for 2 more doses this month, followed by a CT scan, then a 3 week break during which time I will visit NYC for a conference and hopefully take a week long work trip to Europe. Right now the itinerary is Estonia, Latvia, Lithuania, and Portugal. I may lose a country if I decide it’s too much for my first trip out in over a year. I am very much looking forward to it – and am hoping maybe the Sandostatin will be working better by then and I won’t have to worry too much about food issues. We’ll play it by ear or should I say bowel….

I see my urologist tomorrow to have the stent removed (hooray!!) and hopefully all pain will immediately subside. The pathology results came back as “inflammation” and “not malignant”. I’ll learn more when I talk to Dr. Karian on Thursday – because of course I have questions. Why? What caused this? Will it happen again? At least I now am very aware of the symptom of a UTI and kidney blockage so at the first sign of them I will make the phone call instead of hemming and hawing and finally having Pat have to make the call because I am double over in pain and fever. Thanks honey, you saved me once again….

A dull moment…

We made a mutual decision with my oncologist to skip my Erbitux treatment today. Last weeks hospitalization and procedure took a bit more out of me than I wanted to admit. I had some pain and discomfort that lingered until today and even though I am used to pain, I had to take some pain pills to get through the nights. Plus, the stent leaves me with a feeling of pressure, so I am constantly running to the bathroom even though I don’t really have to go. Hard to tell the difference at 3AM.

The plan is for me to have treatment the next 3 Tuesdays, followed by a CT scan. Beginning in October my treatment schedule will work around my travel schedule, which should mean that I am at 100% (or as close to it as I can get) when I take off for all those exotic locales. Because there is no protocol to follow, we are making this up as we go along, so Dr. Lange felt that I was not taking any risk by changing the treatment schedule. He also told me that he has not had one patient yet that has been able to tolerate the treatment plan recommended by the manufacturer, which made me feel better.

All for now.

Off Again, On Again, Off Again

Pat and I placed a friendly wager on whether or not I would get my treatment today. He said no, I said I could talk Dr. Lange into it. He won - guess I’m cooking dinner tonight. I actually felt better today than earlier this week, but the rash is looking a little red and I am feeling a little worn out and wasn’t able to pull off the “I feel great, this little rash is nothing…” approach that I was going for. The nurses caught on quickly and I never even got to see Dr. Lange – the relayed my symptoms to him and the decision to hold off for a week was made sight unseen.

I’m a little disappointed because I had figured out some travel based on actually completing this round in 8 weeks, but we’ll work out something so that I can comfortably get on a plane. The diarrhea has slowly been increasing and we all think that I have developed a tolerance to the dose of Sandostatin that I am currently taking. We’ve decided to stay at this dose for the time being however, and increase it when I get the next Erbitux infusion – to be able to really test to see if it is having any effect. In the meantime I’ll spend the next week coating myself in antibiotic ointment and moisturizer, trying not to scratch, and keeping as much skin as possible uncovered. The good news is that the rash hasn’t developed in any new areas this time – it’s sticking with the tried and true favorites of my back, chest, face, scalp, and of course my left eye. Grateful for small mercies, my eyelashes have begun to grow back.

We had a whirlwind couple of weeks – lots of company and lots going on. We got to spend some time with Tom and Ines, and their almost 2 year old daughter who also happens to be our beautiful, rambunctious goddaughter Iliana. We went to the zoo, rode the Swan Boats, met the ducklings (Jack, Kack, Lack, Mack, Nack, Ouack, Pack, and Quack), introduced them (Tom, Ines and Iliana, not the ducklings) to our favorite Mexican Restaurant (Tu Y Yo), visited the MFA, the fountain in Post Office Square, and Faneuil Hall. Whew…Let’s just say we were all asleep by 9 every night. But it was wonderful to see everyone and spend all of this time together. Pat and I are both ready for a weekend of no plans, which is exactly what is on tap for this weekend.

Going Topless

Pat’s not minding, but we may have to buy thicker curtains. Why have I suddenly decided to become an exhibitionist or naturalist? Contrary to popular belief, it has nothing to do with a recent episode of Queer Eye for the Straight Guy. No, that was enough to turn me off of nudism….however it was a suggestion made to me by my oncologist. I’ll back up now and start from the beginning.

Went in for treatment on Tuesday. Felt pretty good, but side effects immediately began to appear after Michele got on the train on Thursday. Coincidence??? First I got some nice mouth sores, then I woke up Friday morning and the rash had returned. In the scalp, on my chest, but mostly on my back. It was red, irritated, and angry looking. Went back to the usual regiment of antibiotic ointment and have kept it as clean and dry as possible. But it got worse, as it usually does. By Tuesday when I showed it to the nurses, they were afraid that one more does was going to cause it to get infected. Dr. Lange stepped in, took a look, and told me to keep up the ointment, and to keep in uncovered as much as possible – suggesting going topless, or wearing a halter top. He thinks the sweat from covering it is making it worse. Well, I own one halter top, so I guess Pat will be seeing an awful lot of that when I’m home. Fortunately its still warm weather – not sure what I’ll do come winter.

They decided to do the treatment (after much begging on my part) and so I closed my eyes and woke up at the end of it. Went home and did not seem to have the same energy as last week, so I slept some more. Woke up again, ate a yummy dinner of grilled shrimp and veggies (which did not seem to aggravate me at all – one small step in the right direction), and then tried to go back to sleep. 2 sleeping pills later, I fell asleep around 1AM. Got up and somehow have made it through a work day. Looking forward to my vacation day tomorrow and spending time with some friends and our adorable goddaughter whom I haven’t seen in forever.

Despite the annoying side effects last week, we kept relatively busy, did more kayaking (at this rate we are going to need to buy one soon – anybody want to store it for us??) and blew out yet another tire on Route 95. That’s 2 this year. Guess where Pat got to spend his Monday? At least it got him out of the house for a little while and there is a Barnes and Noble close by, so not a total waste of time for him. Next post I’ll fill you in on some of the trips I am starting to plan for work travel. I’ve hit a plateau with the Sandostatin, but I can control my 7-8 daily bathroom visits with what and when I eat, which makes it easier to go abroad. By the time I do go, I may even have the diarrhea under more control since we are continuing the daily injections (though my belly is now as black and blue as my legs, but my arms a clear again, so we’ll probably start there again).

OK – must run…

Two in a row…

I’m on a roll now – this week’s treatment went off without a hitch. As a matter of fact I had no side effects to list when the nurse asked how my week had gone. The rash has yet to find a new location to annoy me from and nothing unusual or inexplicable happened, so all is well. So now I have only 6 more weeks to go in this round. It would be nice to be able to do them continuously as I booked some work travel for the period that should be my break.

Treatment itself was uneventful. I slept through almost all of it – let the benadryl take immediate effect and awoke during the final saline flush, so it was an easy afternoon for me. I tried to nap at home, but didn’t seem to need it. So stayed awake into the evening (even helped with dinner preparation) and then slept through the night. This is one of the best (in terms of how I feel) weeks I have had since I began the Erbitux treatments. Could be because my friend Michele is visiting me from NJ and now she’s going to go home and tell everyone there that I am faking it and making up everything I have written these past 5 months –that there is no rash or sleeplessness or anything bad going on. Or maybe her presence is what is keeping all the side effects at bay and she will need to move up here to keep me side effect free.

I’m still taking the Sandostatin twice a day (and have moved one injection to my belly so a few less publicly visible black and blues). I’m still stuck at about 8-10 trips a day, but we are going to stay on this dose for another week before making any more adjustments. The plan is to have me go on the once monthly by the end of September.

Weekend was good. We went to Falmouth on Saturday for the annual running of the Falmouth Road Race (www.sblifalmouthroadrace.com) on Sunday. Pat ran for the third year in a row and finished the 7.1 mile course in 1:00:55, a minute or 2 off his best ever time last year, but incredible considering the 100+% humidity on Sunday. The only good thing about the weather was the lack of sun. He was joined by his cousins Sean & Paul & Kate – all of whom looked great when they ran past our cheering section located at about the 4.5 mile mark. Pictures are coming.

And that’s all there is to say….

Starting Over

The good news was my eyes cleared up enough to allow me to have my treatment on Tuesday. The bad news is they have decided to restart the counter at 1 for this round. So instead of having 6 treatments remaining until my next break, I have 7. We are still hammering out the details, but it looks like I will have my next CT scan and appointment with Dr. Lange at the end of September instead of the beginning. This doesn’t really change anything, just makes it a little more challenging to make future plans.

I intend to talk with Dr. Lange about possibly changing my treatment schedule. Since it seems I am unable to get through 8 weeks uninterrupted and since we are not following any protocol, perhaps I can switch to 4 weeks on, 1 week off. This might decrease the number of times we need to stop treatment, but only having one week off might not be enough for me to ever get completely over the side effects. It’s just something we’ve been thinking about.

The first dose went smoothly – no side effects yet to speak of. I was even able to tolerate food and drink on Wednesday. I figured that after round 1 I had the rash on my face; round 2 it was on my chest and back; round 3 – still my back and the cracks on my feet; and this last one was the rash on my eyes. I’m taking bets on what the next side effect will be or where the rash will appear next. My eyes are mostly healed, though the eyelashes and brows continue to fall out. I finally got sunglasses that I like so I’m being good and still not wearing my contacts – a 20 year habit that’s hard to break.

We had a nice semi-relaxing weekend – spent lots of time outside. I discovered that I’m still lacking in upper body strength and which greatly affects my ability to water ski (not!) and stay on a tube. Perhaps this will be my impetuous to go back to the gym.

That’s all for now!

Another week off

I arrived at the hospital with my usual bag of goodies – ipod, entertainment magazine, pasta salad, and bottle of juice. Got myself all settled into my chair and went through my latest litany of side effects – which was surprisingly short this week. The nurse checked my eyes (this time I was wearing my glasses as I have been for the past week) and immediately noticed they looked about the same as last week. I said they had gotten better over the week, but on Sunday they started getting worse again and by Monday night, there were new whiteheads and a few less lashes. I’ve done everything they suggested – hot compresses to ease the pain and redness, eye scrubs with baby shampoo, antibiotic eye drops, and every night a light coating of the antibiotic ointment that I use on the rest of the rash. None of it seems to have much of an effect. So, they checked in with Dr. Lange and he decided to hold off treatment for another week.

Even though they don’t really look bad, I suspect that nobody wants to play around with an area as sensitive as my eyes. As I said before, they have not seen anyone else experience this side from the Erbitux so as per usual with me, we are forging a new frontier. I finally gave in and am wearing my glasses every day and went out and got prescription sunglasses too (though I am grateful for Lenscrafters’ 30 day return policy – which I have used once and may again depending on the general consensus about pair number 2). The eyes don’t hurt as much as they did, probably because I’m not forcing small pieces of plastic into them each day, but they are itchy and irritated. Thanks to everyone for your suggestions for taking care of them.

The Sandostatin seems to still be working, though I have reached a plateau. I’m satisfied, for now, with keeping my bathroom visits down to 7-8 per day, but we all think we can get it lower. So I’m staying on the Sandostatin for another few weeks at a higher dose. Pat isn’t thrilled, though he did get a lesson on giving the injections once again. Now we think the reason I keep bruising is because of the amount of drug being injected – it takes a good 30 seconds or more for the whole in syringe to be emptied sub-cutaneously and it may just be too much. One option we are looking at is breaking up each injection into 2 smaller injections, the other is to use my belly for a lot more of the shots. We’ll start with the belly and go from there. I’ve got a nice collection of black and blues, but I’m using a whole lot less Charmin – a worthwhile tradeoff in my book.

We had a lovely weekend in the Berkshires, seeing and staying on the NY side for the first time. We really loved it and found that houses on that side of the border are a whole lot cheaper than ones on the Massachusetts side. Hmmm….

Got another, unexpected, break

Went in for treatment at usual on Tuesday, but the nurses immediately noticed my eyes and were concerned. The rims around both eyes are very red, one actually has the small pimple like things on it, and did I mention I’ve lost a lot of my eyelashes lately? A small side effect, but one that I had no idea was a possibility – it’s so far down on the list that I never even noticed it. Right now, one eye has lost 95% of my lower lashes and about 30% of the upper lashes. The other eye has lost about 80% of the lower lashes and 15% of the upper. Every time I rub my eyes, more fall out. The doc thinks I could loose 100% of both over the next few weeks. And my eyebrows seem to be affected too – they have definitely thinned over the past few months. The hair on my head though – that’s another story – as far as I can tell, I haven’t lost any of it. My pillow is free of hair in the morning as is the drain in the shower, but I’ll be keeping an eye on it (no pun intended…)

Anyway, the eyes look and feel painful, thus their decision not to treat me. They are afraid of infection. For now I am treating them with hot compresses, washing them gently with baby shampoo, and using lots and lots of eye drops to get moisture back. Tears are another issue – I’m having trouble producing them and my eyes are incredibly dry. Pat was chopping red onions the other evening and I couldn’t even go in the kitchen – the pain was so bad and I couldn’t create the tears needed to make the pain go away. I know there is a prescription drug for this condition – I’m going to wait a few more days and see how thing go before adding another drug to my regiment. Anyway – this just means that I got an unexpected break in my treatment schedule and a week when I can actually eat and drink whatever I want on a Wednesday.

Weather around Boston was lovely this past weekend and we took advantage of it as much as possible. Saw some friends on Friday night, spent a good portion of Saturday kayaking on the Charles River – much, much fun for anyone who hasn’t tried it. That evening, we went to see Elvis Costello and Emmylou Harris at the Bank of America Pavilion over on the waterfront. It was a great show and a perfect night for a concert. Sunday was more friends and some relaxing. Though we haven’t been able to take any big trips lately, we have keep our schedules full, are busy and I have managed to achieve enough of a tan to keep me happy. (Don’t even bother commenting on this….)

Well, since I’m banned from wearing my contacts, I must go out now and buy a pair of prescription sunglasses – I guess your eyelashes have some effect on filtering suns rays because wow is it bright and painful when I walk outside right now without sunglasses! Hat’s work somewhat, but I might as well do this in style.

Oh, and not to jinx myself, but the Sandostatin does still seem to be working – a grande iced mocha from Starbucks was not a great idea, especially followed by tacos, so I have some days where I use more Charmin than I would like, but for the most part I seem to be between 4-7 trips a day – woo hoo!! And I’ve got enough Sandostatin to get me through another week, so it’s 7 more days of twice daily shots for me. As long as it works, I can deal with the black and blues. I will however, avoid the above mentioned food/beverages for the near future though.

Overdue posting!!

I’ve been on a regular schedule of writing and posting every Wednesday for the past 5 months, but time got away from me last week. I was busy at work trying to wrap things up before taking off for a mini-vacation on Thursday evening. The good news is that there really wasn’t anything for me to report last week. I’ve been enjoying my time off Erbitux and getting my strength and energy back though this has taken almost the full two weeks to reach this point. The rash continued to get worse during the first week off, but now has almost completely subsided, just in time for Dose 1, Round 3. I’m not going to start complaining about this yet, I’ll leave that for later in this round. I’ve been on the increased dose of Sandostatin for 2 weeks now and am starting to see a difference. I’m certainly not constipated, but my trips to the bathroom each day are now under double digits. And I’m not as afraid to venture away from my comfort zones, like into the forest for another mountain climb (Speckled Mountain). It wasn’t as high as Mt. Tecumseh, but the whole hike was a lot longer at 8.2 miles.

I was exhausted and sore at the end of the day, but very satisfied with my latest accomplishment. Instead of hiking again on Saturday we decided to soak in the local air (Bethel, ME) and hung around for the Mollyockett Day parade. Pat took pictures – I’ll post them later. We took our time driving, stopped at Poland Spring and saw “The Source”, played a really lousy game of mini golf, and finally ended up in Portsmouth, NH. It was a great weekend – lots of relaxing and culminating in a really delicious dinner at the Wellington Room in Portsmouth, NH. And being able to enjoy a meal like this makes my twice daily shots of Sandostatin worthwhile.

Pictures of this and the previous several trips to follow – eventually!!!

Call Me Mickey

As in Mickey Mouse. Somehow in my diligent research about Erbitux, I missed the part that said it was made partially from mouse antibodies. ERBITUX™ (Cetuximab) is a recombinant, human/mouse chimeric monoclonal antibody that binds specifically to the extracellular domain of the human epidermal growth factor receptor (EGFR). ERBITUX is composed of the Fv regions of a murine anti-EGFR antibody with human IgG1 heavy and kappa light chain constant regions and has an approximate molecular weight of 152 kDa. ERBITUX is produced in mammalian (murine myeloma) cell culture.

I don’t have a problem with this and when I think about it, it makes sense – and it certainly explains my recent cravings for cheese and the need to run around mazes. Actually, I discovered this while reading an article in CURE magazine. It was talking about a new, fully human monoclonal antibody called Panitumumab which will soon be a competitor to Erbitux. They say that the majority of side effects people experience from Erbitux is due to an allergic reaction to the mouse antibodies so there should be fewer side effects from a completely human antibody. Woohoo!! However, in the little data that has been released the 2 biggest side effects of Panitumumab are rash/acne and diarrhea….Oh well.

It’s in the final stages of clinical trials and not FDA approved yet so I won’t be asking to switch. I may investigate and see if I can get in on a clinical trial or compassionate use program. No drug company will spend the money to do a clinical trial for appendix cancer or pseudomyxoma peritonei since there are relatively few cases out there and it really isn’t something on anyone’s radar screen (read: no money to be made here…)

Not much else to report. Side effects are still hanging around – for some reason the dry skin and rash on both my eyes got a little worse this week forcing me to slather on moisturizer every few hours followed by hot compresses on my eyes. Sandostatin finally arrived on Saturday so I’ve been rebuilding up my system with this twice a day. We’re still having some problems with bruising and I now have 6 black and blues from the last 6 injections – good thing I’m not diabetic! We’re just hoping this does the trick. Or at least gets me out of double digit numbers in daily bathroom trips.

I am enjoying my first week off from Erbitux treatment and being able to eat on a Wednesday. Had a busy, but fun long weekend – finally able to see and catch up with a lot friends we haven’t seen in weeks or months. Boston fireworks were the best we’ve seen in years, though we all agreed that 10:30 is much too late to be out on “school” night.

Later….

Another Round Completed

I had treatment number 16 on Tuesday and it went just fine, though I am very happy to have a two week break. I am wiped out after this latest round and I hope to catch my breath and give my skin a chance to heal over the next few weeks. Right now it’s just a matter of very dry skin, the irritating rash on my neck, chest and back, and cracked skin on my heels and fingers. All quite tolerable, but I’d prefer not to be dealing with any of it.

I also had my 8 week follow up with Dr. Lange. It was a good thing Pat was there, because they decided to start my treatment before I saw him, so I had already had my benadryl when we sat down to talk and it was a struggle to keep my eyes open. As expected my CT scan was clean once again. There was no dancing or celebrating as we both know that this doesn’t mean a whole lot at this point. However, it does mean that I will continue with the Erbitux for another 8 weeks. We may skip the CT scan at the end of the next round, but that won’t be decided until week 6 of the next round. I think we talked a bit about my diarrhea and what else can be done to slow it down. I agreed to try drinking a glucose solution which is usually administered via IV – though it’s still sitting in the fridge and I’m not too anxious to try it. We also were able to track down coke syrup for me to try. Dr. Lange thinks the extra sugar from these products will absorb the excess water in my system and slow down the diarrhea. I am also supposed to still be on the Sandostatin. Notice I said “supposed to be” - once again the mail order pharmacy has messed up. They sent the wrong approval form to my doctor’s office not once, but 4 times. Finally got things straightened out yesterday, so the medicine should have shipped. I’ll find out today if it did. I’ve been off of it for 2 days now and since it’s a cumulative effective, I may have to start all over if it doesn’t arrive today. Oh joy! 28 more needle sticks to get this stuff to work. At least we finally figured out how to give the injection without leaving a bruise.

We did just return from a brief but fun trip to New Mexico. Met up with my parents in Santa Fe and did lots of exploring. Its beautiful country and we ate lots and lots of excellent Mexican food. We chose one restaurant because of its name (Café Pasquale’s) and its location (Don Gaspar) – then we had several locals recommend this same restaurant to us. Everyone was right – it was by far the best restaurant we ate in – twice, once for dinner and once for breakfast. I finally located their website www.pasquals.com. Anyone traveling to Santa Fe should definitely stop by for a meal.

I took lots of pictures and will try to post some later.

Light at the end of the tunnel

It’s been a slow week. No mountains or kayak trips. Our weekend was uneventful – last week was busy for me, much socializing after work long work days and I wasn’t able to do my usual work from home day, so I was tired by the time Saturday rolled around. Saw some friends on Saturday and attended a very nice baby naming ceremony for Gillian. Then came home watched a few movies and fell asleep. Sunday morning Pat flew out to Toledo and I camped out on the couch – for the rest of the day. Much needed relaxation, especially since I was on a plane to NYC at 6AM on Monday. Spent the day at a Mobile & Digital Licensing Summit at the Javits Center and back on plane by 6PM. Long, but semi-productive day. I returned to Logan at 10PM to pick up Pat.

Bed was on my agenda, but first I had to do my CT scan prep of a lovely barium type drink. I mix it with cranberry juice, which makes is semi-palatable. However I play a mental game with myself every time I need to drink this stuff and I’m finding it harder and harder to get it down.

Probably because I know that as I drink it, I am going to be making more and more trips to the bathroom and because of the hard time I had 8 weeks ago at my last scan. Got through the night, and awoke with enough time to drink the 2nd half of the prep before heading off to the hospital. Pat dropped me off; I went up to HemOc (Hematology / Oncology) got my port accessed, and headed back downstairs to be scanned. All went smoothly – the techs recognized me and we had a nice catch up conversation. A brief stop at the café for a bagel, since it had been over 15 hours since my last solid food, and some water to keep me from getting dehydrated (the problem that kicked my butt last time), and back to HemOc for my Erbitux.

The rash is slightly worse this week – it’s on both eyelids making it painful to wear contacts, my chest is getting bad and now my back is completely covered. I stopped the oral antibiotics because I don’t feel like dealing with a yeast infection, but I am being more diligent with the antibiotic gel. It seems to be having some effect. This weeks Erbitux went smoothly. Once again I slept through most of it. I woke up to see Pat sitting across from me and about 20 minutes remaining. I was back home by 2PM and asleep in my bed by 2:30. Slept most of the afternoon, but more importantly was able to sleep through the night.

I’ll get the results from the CT scan next Tuesday when I have my 8 week follow up appointment with Dr. Lange. I told the techs not to send the report upstairs unless it was clean.

Finally, I’ve been on Sandostatin for almost 2 weeks now. This week is the first time I am noticing any sort of effect. I think things are slowing down, but because of the CT scan prep and the usual inability to eat or drink on Wednesday, I can’t tell for sure. It certainly hasn’t constipated me like the nurses thought it would, so I am continuing on this dosage for the next week. Fortunately I am on the lowest possible dosage, so there is much room to increase. It’s a bit of a pain getting the meds because they have to be sent mail order, Cigna has to approve each prescription, and they have to be kept refrigerated, so it takes much planning to get the vials. Most likely we will increase my dose next week. The shots aren’t too bad, but we are having some problems not bruising me each time. When I inject myself I don’t get a black and blue, but Pat is feeling really bad about the bruises he keeps leaving me with. It looks like we’ll have a few more weeks to work this out.

I am looking forward to week 8 which as of right now is scheduled to be followed by a two week break from treatment. The next 8 weeks are already scheduled, but all of this needs to be confirmed with Dr. Lange next week. We don't expect any surprises, though I may try to finagle a 3rd week off.

And that’s all she wrote…

4000 feet and still climbing

OK so I know the climbing metaphors are getting old, but this time I really did climb a mountain. Mt. Tecumseh in Waterville Valley, NH a 4004 foot mountain to be exact. Pat and I decided to spend some down time in NH this weekend and this meant some outdoor activities. The weather was hot and sticky with high humidity but we set out early to beat the worst of the heat. Because of all the rain everything was quite lush so I spent much of the first part of the hike snapping pictures of the many, many shades of green. The camera got less and less use as the trail got rockier and steeper. It was tougher than we thought it would be, but there was another group on the trail with us and we traded off taking the lead, which to me meant they were resting as much as we were. Since they were younger and semi-experienced hikers (if you can judge this by their footwear, packs, and bug spray, and the later conversations we had in which they talked of climbing most of the mountains in the Presidential Range), I wasn’t as frustrated as I might have been if we were alone. Reaching the top was anti-climatic. The weather was overcast and the tree line dense so not a lot of views. But we made it (as you can see here and here). Yippee!!! I felt good!!

Going down should have been and easier trip. We decided to take another trail down – we knew the trail was partially in the woods, but most of it was going down the ski slopes since this was the other side of the mountain. Not our brightest moment. It’s a lot harder walking down ski slope than skiing down them (and that’s coming from someone whose last trip down this mountain was on a toboggan towed by the ski patrol because she had a spectacular fall and screwed up her knee on the first run of the day). It’s really difficult to stop the downward momentum and tempting to just sit and slide down on your butt. We crisscrossed the slope and made it down in just under an hour (it took us almost 3 to ascend, so you do the math). Our knees were sore and we got a few more bug bites than we would have liked, but we were back at the condo for lunch. Spent the afternoon at the pool with the rest of the Gasbarro’s.

Sunday we both awoke in pain – OK, me more than Pat, but he admitted to being a little sore as well. To combat this we decided to take a 2.5 hour kayak ride down the Pemigawassat River. Our nephew Aidan joined us for the first part of the trip, and then we kayaked the rest of the way on our own. By the end our upper bodies were as sore as our lower, but all in all it was a good weekend and for us, relaxing in its own way. Now that he has some free time on his hands, Pat and I both hope to do lots more of this type of stuff this summer – as long as my energy holds out.

I had treatment 6 of Round 2 on Tuesday. At least I think I did. I fell asleep after one round of Pass the Pigs with Pat and awoke 2.5 hours later when they were disconnecting me. If only all treatment days could go as smoothly. I have 2 more treatments this round, a scheduled two week break in the beginning of July, and they have already signed me up for 8 more weeks. This plan could change. I have a CT scan next Tuesday before my treatment. We are hoping that by timing it this way, I will avoid the dehydration issues I had last time. My follow up appointment with Dr. Lange will be the following Tuesday before Round 8. As long as the scan is clean again (which we have lots of reasons to believe it will be), we will go ahead with the next round. I do plan to talk to him about the possibility of extending the break between rounds - mostly to see if it makes any difference to my diarrhea. The decision will most likely be a gut (no pun intended) feeling because as I’ve said before, there is no protocol for using Erbitux for appendix cancer.

After a few problems with shipment, I got my vials of Sandostatin. I’ve been on it for 6 days now. Two injections a day and thus far it has not stopped or even slowed the diarrhea. Some days it has actually been worse, but we all agree that it may just take a few weeks before the effects of it kick in, so we’ll continue for at least another week.

And that’s all from our end….

Treatment 5, Round 2

All went fine on Tuesday. It was another warm, sunny beautiful day in Cambridge. I asked for a room near the pool or on the veranda, but had to settle for T4 – which at least has its own A/C control and a view of the Charles River, if you look over Memorial Drive. Everyone seemed to be in good mood and it was relatively quiet, which is always nice in Oncology.

I had a long chat with Susan, one of the nurses, regarding my Sandostatin prescription. She has spent much time over the previous week trying to get me this medication. Finally got the approval from the insurance company and now the pharmacy that it needed to be ordered from was giving her a hard time. Fortunately I have a great case manager at Cigna, she worked with Susan and after I called in my credit card number for the co-pay, the company said I should have the medication today. Whew! After all this work, I think the general consensus is that this better take care of my diarrhea.

I think I stumbled on a way to keep it slightly under control myself. And no, it doesn’t involve starving myself. During my weekend up in Maine, which was fabulous by the way, I did not have a lot of problems. So it’s either the salt air, or more likely the fact that I was eating lots of seafood. Lots of simply prepared sea food – shrimp cocktails, lobster rolls, crab rolls, salad topped with lobster, etc. I still had some episodes, but no where neat the typical 10-15 trips a day I have on a normal day. We haven’t put this to the test yet, but I really didn’t have much trouble convincing Pat we need to switch to a diet of shrimp, crab, and lobster only. I didn’t relay this information to Dr. Lange – I figured I’ll see if it works before I say anything.

Pat had a semi-enjoyable weekend with out me, I think. He worked a vast majority of the time, but then took some time for himself and did some aimless wandering. He brought home some beautiful flowers and the fixing for a yummy berry sorbet. Heather and I enjoyed ourselves thoroughly in Kittery, Ogunquit, Kennebunkport, and finally a pass through York Beach to see Nubble Light House. Pictures to follow shortly – if I like any of them. The weather was gorgeous – we were able to spend all day every day outside, walking Marginal Way, wandering around Perkins Cove, finding some really pretty sea glass jewelry, and just sitting on the beach listening to the crashing waves. At night, Heather let me win almost every round of Pass the Pigs, the dice game we discovered. For anyone who knows Heather, she did not exactly “let” me win – and she wasn’t exactly happy that I kept kicking her butt.

Back to work this week. I am really starting to miss the travel side of my job. I have plenty to keep me busy in the office, but I always considered one of my perks to be the trips I had to take. They could be stressful and frantic, with every waking moment filled, but I really enjoyed them. Doing the research from this end and having all my contact be via email, just is not the same. I don’t feel I am developing the same relationships I did when I was traveling. Somehow I think that nasty word networking falls into play here, though I will deny it if anyone were to ask me direct. If the Sandostatin works, then I can see myself volunteering for some trips later this summer. If it doesn’t then I’ll just have to find some other ways to stimulate my brain.

Now I’m going to go off on a tangent. Feel free to stop reading here as the next few paragraphs are going to be a bit of a ramble.

I belong to a bulletin board group for Pseudomyxoma Peritonei patients and caregivers. We all share advice and talk about treatments, doctors, etc. For the most part I chime in whenever I feel I have something productive to add. Someone recently posted about the Lance Armstrong book, “It’s Not About the Bike” and saying how inspirational they found it blah…blah...blah. Not wanting to make myself known as a troublemaker or sour puss on the board, I opted not to post the following there, but rather decided to put it here because I need to say it and this is my opportunity to speak my mind. Take it however you may.

I have heard and participated in many, many discussions with other cancer patients and survivors about inspirational books and Lance's "It's Not About the Bike" is always a popular topic.

I haven't read either of Lance's books, and don't intend to. I have 3 or 4 copies that were given to me by well-meaning people over the years, but that still hasn't gotten me to crack the cover. I do, however, wear yellow in the form of a LiveStrong bracelet that supports Lance Armstrong's Cancer Research Foundation - so I'm not totally anti-Lance. I just have never reached a point in my battle where I think it would be good for me to read a story about a man who kicked his cancer in the a** and went on to win 6 Tour de France's. There are days I struggle just to get out of bed. Before all this happened, I had no interest in competitive bike racing, or competitive sports of any sort. And cancer has not changed my attitude about that. I just want to go about living a "normal" life. I don't see the need for extremes. Not have to worry about what I eat and how many trips to the bathroom it will cause. To go out to a restaurant and pick something off the menu that I really want and not the item that is least likely to cause me problems later that night. To go on that cruise down the Danube despite the fact that the bathrooms are shared and in the hall instead of in the individual bedrooms.

I think Lance's story is compelling and that there are thousands of people who have been inspired by it. But I also think that it strengthens the belief that cancer is a "curable" disease. Maybe "curable" is not the right word, perhaps "treatable". There are a lot of people who battle cancer, they go through their treatment and 5 years later it is behind them. There are still a lot more out there who are diagnosed too late and quickly lose the battle. Then there is the small, but growing percentage of us for whom cancer is a chronic condition. Doctors have a hard time with this one. It’s not supposed to be chronic, but Dr. Loggie and I talked about this in great length and he is trying to change their minds, one oncologist at a time. It is possible for cancer to be chronic and not necessarily debilitate the patient for the rest of their hopefully long life. I'm on board and so is my oncologist. 6 years ago when I was diagnosed, all the stats pointed towards maximum of 5 years survival. Like I said, I'm at year 6 now with the end nowhere in site. It hasn't been an easy journey and I have good times and bad times, but I wouldn't trade these 6 years for anything. Before I didn't expect to see my 35th birthday, well that's in 6 weeks and I have no doubt that I will be around to celebrate that one and my 40th as well.

The best thing someone once said to me was at a conference on which I spoke on a "Survivor's Panel" (Yes, there was must discussion as to what constituted a survivor, and we were all in agreement that I am a survivor). Anyway...I spoke after a woman who had battled stage III breast cancer. She had 9 chemo treatments and to each one she wore a marathon shirt (she had run 9 marathons before her diagnosis). A year and a half after she completed treatment and was though not technically in remission she was cancer-free, she climbed Mt. Kilimanjaro. She made it to the top. The audience was blown away. I began my talk right after her, and I started with the sentence, "Whoa, tough act to follow. I haven't climbed any mountains" - she stopped me immediately and said "Yes you have". This simple phrase put it all into perspective for me. And I think my story blew away a few more audience members.

End of rant.

The sun is shining!!

Got my latest dose, number 11 (or Round 2 Dose 3 depending on how you are counting) on Tuesday. The nurse wasn’t happy with the look of the rash on my back – I can’t see it, but I know it has been itchy. Dr. Lange came in and looked at it, and fortunately decided it was not severe enough to cancel the treatment. In addition to my antibiotic ointment, he added some oral antibiotics to my regiment. I told him that as long as it wasn’t on my face, I could handle the rash. It is in my scalp again which is beyond annoying, but neither Dr. Lange nor the nurses could see it because as they said, I have too much hair – not a common problem in the Oncology ward. Dr. Lange also asked after my diarrhea. I told him that I’m still at about 10-15 bathroom trips a day. He is not happy with this.

We talked about a drug he wants me to try. It’s called Sandostatin, and it requires several subcutaneous injections a day for a few weeks before going dropping down to weekly injections. I am still doing research on the drug, while the nurses and drug company are fighting it out with my insurance company to see if/how much will be covered. I don’t mind doing the injections – I still have one numb thigh so sticking myself 3 or 4 times a day where I can’t feel it shouldn’t be too bad. Of course I say that now – ask me again in 3 or 4 weeks after several dozen sticks. However, if the drug does what it is supposed to, then we’ll all be happy. Funny thing is the side effects of both the antibiotic I am taking and Sandostatin include diarrhea!! Somehow I think it’s a no-win situation.

It’s been a busy few weeks. We took a brief weekend trip to Miami two weeks ago – got to soak in some rays, see a Marlins game, and have a long overdue reunion. It was a good weekend, but exhausting. Last Thursday night we went to see U2 at the Fleet Center / Boston Garden, or whatever they are calling it these days. The t-shirts say Fleet Center – maybe they will have new ones printed up before their shows in October. Maybe I’ll have to go again just to find out. The concert was great. This was my first time seeing Bono and company, Pat’s second. Of course the last time was 1987, so this was a slightly different show. We both agreed it was one of the best concerts we’ve seen in quite a while.

Memorial Day weekend we did something unusual for us. We stayed home. I think this was the first time in the 7 years we have been together that we did not go anywhere for the weekend - like New Hampshire, New York, or Puerto Rico. This was mostly because Pat did not have Monday off so we would only have had 2 days, but also because we are both exhausted and it was nice to just stay home and take it easy. The weather finally cooperated and we had this big yellow ball in the sky that they tell me is the sun. We took a drive up the north shore coastline. I got my first lobster roll of the season, we blew out a tire (we and the car are fine, and for once luck was on our side because as we pulled to breakdown lane of Route 95, a AAA tow truck pulled up behind us), and spent some time driving aimlessly around trying to decide if any of the towns we drove through were worth considering as a place we’d like to live. So far no, but stay tuned.

This weekend I am heading up to Maine with my friend Heather while Pat stays home and well, works. The sun is supposed to shine once again, so we should have a fine time in Ogunquit – lots to see and do and maybe I’ll even take a picture or two. Not sure what else will be on the agenda – perhaps a stop in Kittery, but mostly just taking it easy.

Enough from this end. I just wanted everyone to know that as much as I can, I am doing some stuff other than going to the bathroom, work and to the hospital once a week.

Dose 10

All went smoothly on Tuesday. I don’t have much rash and my diarrhea is somewhat under control (as I told the nurses, I make less than 10 trips to the bathroom a day, which is progress for me). That is when I don’t do something stupid like eat potato skins and beer at 10pm at night – believe me, I learned my lesson.

I didn’t sleep through the whole procedure, but did get a catnap in. Had some issues with sleepless that evening and night, as well as a bout of indigestion which is a new side effect, but all was manageable. I had to work from home Wednesday morning since I did not have the energy to move having not gotten much sleep the night before, but did get in to the office later in the afternoon.

Not much else to report this week. Looking forward to seeing U2 tonight.

Off and running…

Interpret that as you may. I had my Erbitux treatment on Tuesday - Round 2, dose 2, or as the nurse put it, Round 9. I must have been extremely exhausted because about 5 minutes after they hooked up the Benadryl, I fell asleep. And woke up 3 hours later when the last drips of saline were finishing. Pat dropped me off at home while he returned to work. I crawled into bed and slept until 8pm, when he came home and woke me up for dinner and the season finale of Gilmore Girls. I’m not ashamed to admit that I like this show. Usually when I sleep this much during the day, I can’t sleep that night, but not this week. Without adding any more chemicals to my system, I slept soundly until about 4 AM the next morning.

Before falling asleep, I talked with the nurses about my side effects. The week off and the addition of Kytril didn’t stop the diarrhea. I have slowed down a little so that I am back under double digits, most days. We are now trying a combination of codeine, diluted tincture of opium, and Lomotil, which is the active ingredient in Imodium and is cheaper to get by prescription than over the counter. So far it seems to have slowed me down, but I’m not going to dance a jig and claim to be cured just yet. I also heard about a study being done at the Cleveland Clinic that involves electronic impulses, the sciatic nerve and the bowel – sort of Frankensteinish. I don’t know all the details and I’m guessing my previous chemotherapy and radiation may rule me out of any clinical trial, but like I have said previously I’m willing to try just about anything at this point.

So far it’s been a chilly rainy spring here in New England, but one of these days the sun is going to come out and stay out. We’ve had 3 “rainy” weekends in a row and they are predicting yet another one. They’ve meant Pat has been able to go in the office and work even more without feeling guilty about missing out on any outdoor activities we might do together. We did find some time this past Sunday morning, before the clouds rolled in, to take a nice long walk along the beach and clear both our heads. I should have the house in perfect order with all this free time, but I’ve managed to find other less boring things to do and they haven’t all involved shopping.

That’s it from here.

Off to a slow start

Dose 2 of round 2 Erbitux treatment was supposed to be administered on Tuesday, but was cancelled. Before starting any round of treatment, I talk with the nurses about the side effects I am experiencing. I commented that my diarrhea was still pretty bad. When asked to describe pretty bad, I said 12-15 bathroom trips per day, including getting up in the middle of the night, something that hadn’t really been an issue before. Some head scratching, reviewing of drug manuals and discussions with Dr. Lange led to the decision to hold off for a week and see if things get better on their own. We also decided to add in Kytril, which is an anti-nausea medication that apparently constipates everyone who takes it. Well, four doses later and I can officially say “Not me!” It hasn’t seemed to help at all. I’m not getting up at night lately, but that’s probably because I’m taking benadryl for some itchiness and thus being knocked out at night.

I know that there are a couple of things that could possibly happen on Tuesday when I go back to try for round 2 again.

1. Just push forward and deal with the diarrhea as I have been. Keep a close eye on weight loss (down 2 pounds from the previous week) and try to supplement diet with nutritional drinks, etc.
2. Lower the dosage, but no data exists on the effectiveness of the drug at a lower dose than the one I am on.
3. Switch to a treatment schedule of 1 week on, 1 week off. Again, no published data on the effectiveness of the drug on this schedule.
4. Stop the treatment completely.

I’m not sure which one I am rooting for. Today I wouldn’t mind going off Erbitux completely. I awoke this morning to find both eyes swollen shut, and the pimples/acne on both eyelids of both eyes. Previously it had only invaded one eye, but now it’s on both. Slightly uncomfortable. However, I believe the drug is working and would prefer to suffer through at least a year of treatment to see if it gets me more than 18 months until my next surgery. So I guess I’m leaning towards option 1. I’ve dealt with the diarrhea for the past 5 years, what’s another year?? OK, it’s a lot, and I’ll probably complain about it to any/everyone. But is it really a lot to ask to be able to go out to a restaurant and pick something off the menu for dinner that actually appeals to me and isn’t the “safe” choice, the food that will cause me the least amount of discomfort? I know there are thousands of people out there who face similar issues because of Crohn’s disease or IBS, but this is my pity party. I really just want a nice juicy steak, some corn on the cob (slathered in butter) and a huge piece of cheesecake.

The absence of treatment this week has meant that I have some extra energy which is nice. I didn’t have to drive into work every day. I was able to go out to a movie on a weeknight. I’m hoping the energy stays with me through the weekend. It might be nice to be able to do something with my husband. Especially since both our trips got cancelled and so we are both going to be home.

Hope everyone has a nice weekend!!

Round 2 dose 1

I had intentions of writing this update last Wednesday enroute to Florida, but my laptop never made it out of my bag and the next few days passed like a whirlwind. Its now Sunday afternoon and I’m on the flight home. I was in Marco Island, Florida for work. We have employees all over the world and every few years we have a meeting where everyone gets together. There were a few team building and bonding exercises – like building a raft on which we had to float a margarita (in the ocean with the waves pouring in). We accomplished pretty much everything we set out to, plus found some time for fun – like a 2 hour Jet Ski expedition. The ocean was a bit rough so at first it was a little frightening going at 5 and 6 foot swells, but by then end we were charging headfirst at the waves and flying off of them like it was nothing. Tough job, but somebody has to do it. Monday it’s back to the office as usual.

I had my first dose of Round 2 on Tuesday before leaving for Florida. The 2 weeks I had off from treatment flew by. Though I didn’t visit the hospital once during the break, I still felt as though I had never left. Things went smoothly and I felt OK afterwards. We had some discussions about my diarrhea because it didn’t really slow down during the break. I am going to push forward with treatment, try a few other homeopathic options and see where things go. As long as I am not getting dehydrated they want me to continue at my current dose levels. I’m taking it one week at a time. I only had minor problems with the taste buds on Wednesday and I am feeling wicked exhausted today, but no new symptoms which is always good. Dose 2 is on Tuesday and I’m hoping to catch up on some sleep before then.

This trip was a good test for me to see if I am ready to start taking on more work travel and I discovered I most definitely am not ready. My system couldn’t handle pretty typical American food and I made more trips to the bathroom than I can count, so it’s apparent that I’m not ready to take off for Timbuktu and whatever their local delicacy may be. I’m disappointed - it’s been 6 months since my surgery and I’m nowhere near back to pre-surgery condition. I know it takes longer each time to bounce back, but my intestines are showing no signs of slowing down. My doctors tell me to be patient, but everyone realizes my patience is wearing thin.

I’m going to cut this short before I start whining and complaining and writing something that even I don’t want to read. I’ll post again later this week after my next dose. I’ll be home and more rested which will be better for everyone.

Still on a break

Not Ross and Rachel or Pat and I, just me from my Erbitux treatments. This was week 2 without treatment. Energy wise, I am feeling pretty good, able to do a little more than I was during treatment. The majority of the rash and acne is clearing up; except for the stubborn 3 pimples on my left eye which alternate between itchy, painful, and merely swollen. I’ve got a cleaning and scrubbing system down plus eye drops, none of which seem to be working, but everyone tells me it just takes time. I’m a little impatient.

I went back and was re-reading a few of my posts, and I realized I need to post a correction to something I thought Dr. Lange said. “I guess a little rash is a small price to pay for a clean scan”. After talking with him directly at my checkup, I think I may have misheard him. We talked about how the rash and acne are not small inconveniences, and that the next time a drug rep comes in and touts a medication as having “few side effects” that we should have the drug rep receive a few doses. It was a good conversation and I realized we are on the same page.

This past weekend was our sixth wedding anniversary – and we spent the weekend in NYC. Got a great hotel for a cheap price on Priceline.com and saw one of the hottest shows on Broadway – Monty Python's Spamalot. I had purchased the tickets in January as a birthday present for Pat and am I glad that I did. It’s almost impossible to get tickets for weekend performances of this show now. It was great to see the show with the original cast - Tim Curry, David Hyde Pierce, and Tim Curry to name a few. We had a great time, laughed for 2 straight hours.

We followed it with dinner at a Brazilian Churrascaria. It’s a bbq type restaurant where they keep bringing by platters of meat until you cry “UNCLE” or put the stop sign up at your table. We both ate a good portion of a cow and a pig. It was a lot of fun and good food. We got a chance to relax somewhat and spend some time together without interruptions from work or cancer (for the most part). It was a nice break. The 3 pimples on my eye re-appeared on Sunday morning in the swollen, painful mode, so we left for home a little earlier than we had planned.

Now we are back in work mode – this week Pat is traveling on the west coast, and next week I head down to Florida for work. We’re both going to be busy with some travel over the next few weeks, but it’s all good.

Later…

Taking a break

It’s taken me a little longer than usual to write an update, but there’s no medical reason, just laziness. I am enjoying my two week break from treatment and avoiding the hospital. My rash is still around, but it’s much more tolerable. The facial acne is actually starting to go away, though for some reason there is one stubborn pimple on my lower eyelid that won’t go away. The rash is still around on my chest and back – but I haven’t had a lot of reasons to bare these areas yet. Other than fatigue, I’m feeling pretty good. I’m able to eat and drink so no dehydration. Still have diarrhea, but that’s a given and I resigned to the fact that it’s not going away anytime soon. We are hoping the break from the Erbitux will help slow down my system, but so far it hasn’t happened.

I met with Dr. Lange before my last Erbitux treatment. He was still very happy with the CT scan results, but like me, cautiously optimistic that the Erbitux is the reason why. We both know that the telltale scan will be the one I have in January 2006, at the 15 month marker. However, we both agreed that this was a milestone and a reason to celebrate.

We then proceeded to have a longer discussion about the future. Since Erbitux is still unproven in treatment of my cancer, we are basically making things up as we go along. One of the benefits of monoclonal antibodies is that medically there is no reason to take a break from them, unlike chemotherapies. However, we all agreed that I needed some time off to regain my energy, get the rash to clear up, and to get on with my life. Dr. Lange understood that 1) the rash is not so insignificant and that it effects my state of mind as well as my self esteem; 2) I need to be able to make some future plans, so knowing that I will have 2 weeks off after every 8 weeks was important to me; and finally 3) the weekly treatments are effecting my ability to do my job, specifically my ability to travel. There’s not much we can do about number 3, so I am hoping that as time goes on I will regain the strength I need to make some of my international trips. All in all it was a good discussion and we’ll meet again after my next 8 week cycle and scan to see where things stand.

I do have a few trips on the horizon, all in the US, but it’s a start. We have a work meeting in Marco Island, FL the first week of May and the following weekend I’ll be going to Los Angeles for 2 days for another meeting. I’m looking forward to these trips and will be watching my sun exposure and energy levels. I’m sure all will be just fine.

Until later…

Dose 8

Just a quick post to report that I received dose 8 today. All went smoothly. I also met with Dr. Lange and got a better idea of his plan for my future. Instead of one week off between rounds, we decided I could handle 2. This will give me a little more time to catch my breath, clear up my acne, stop my scratching and get ready for the following 8 weeks. That seems to be the plan – 8 weeks on, 2 weeks off – for as long as I can tolerate it and as long as my CT scans keep coming back clean. It’s a long road ahead and one that will probably require several rest stops.

More later….

One backward step….BUT good news as well

I had my CT scan on Thursday. This is nothing new for me as I’ve been having quarterly scans for as long as I can remember. The procedure involves drinking a lot of a barium-based beverage. It’s something to help them see my insides more clearly and they may have actually found something other than barium to use for this, I don’t know and I don’t ask. Anyway, there’s a new procedure at Mt. Auburn which allows me to take the powder home, mix it myself and drink it before I arrive for my scan. This means I don’t have to spend 3 hours drinking the stuff in the hospital lobby. So, I took my powder home with me on Tuesday after my treatment, and mixed the first batch on Wednesday night. Drank that before I went to bed. It acts sort of like a laxative in me, so let’s just assume I did not sleep much on Wednesday night. Oh, and remember I can’t eat or drink anything on Wednesdays because of that awful taste, so my stomach is pretty empty. Can you tell where this is going?

So Thursday I get up, drink the other half of the stuff, go to the hospital, and have the nurses in Oncology access my port, and head down for my scan. Stop in a bathroom along the way to evacuate some of this lovely beverage. Have the scan. Go home, spend much of the afternoon in the bathroom, and try to start re-hydrating myself. Don’t sleep much on Thursday night. Friday morning comes along and I get up and get ready for work – very slowly. I feel quite lousy. Try to drink water, Kool-Aid, you name it. Everything nauseates me. Spend about 2 hours at work staring at my computer screen, head pounding, feeling nauseous, when it hits me that I’ve felt this way before - when I was dehydrated! So, I tell my boss I have to leave, call the oncology ward at the hospital who tell me to come in, and I drive straight there. Spend 2 hours hooked up to a saline drip. I feel 100% better when they are done. Go home and take it easy for the rest of the evening, regaining my strength. Finally sleep through the night.

Moral of this story: I can’t have a CT scan the same week I have an Erbitux treatment. Lesson learned, won’t happen again. And I am feeling great today, so perhaps that extra fluid helped with my energy levels.

Now for the good news. The oncology ward was pretty empty on Friday afternoon, which meant Dr. Lange was able to catch up on stuff, like reading the results from my CT scan the previous day. His comment to me: “Who took your CT scan for you?" This can’t be yours because it’s the scan of a normal person.” WHOO HOO!!!! I read the scan and there are no tumors visible anywhere in my abdomen, chest, neck, or pelvis. Not that I expected anything to show up, but its always nice when the report backs up my gut feelings. As he wandered away, he made two comments. “I guess a little rash is a small price to pay for a clean scan”. I’d like to know his definition of “little”. The rash is no where near as bad as it was after week 3, but its still around. Pops up in different areas, and has yet to leave my back. And my scalp is really irritated lately, with lots of pimples and now scabs from where I’ve scratched. Plus I just bought a very pretty dress with a v-neck that I won’t be wearing unless my neck clears up. He seemed to have forgotten the other side effects I’ve been having – dry, flaking skin, diarrhea, weight loss (just bought size 6 jeans – never thought I’d see that size again!), and general fatigue. This is all stuff we will discuss at my actual appointment with him next Tuesday.

His second comment was to one of the nurses. She reminded him that this Tuesday would be week 8 and that is all I was scheduled for, and what was his plan. “Sign her up for 8 more,” was his response. I asked for a break between sessions. I got a week off. So I will have week 8 this week, then a week off, and then back to 8 more weeks. This may change as I may ask him for something more like 12 weeks on, 8 weeks off, or a more traditional regiment. However, Paula, the nurse said this medicine could be taken continuously and there really is no need for a break, unless I wanted to do something like take a vacation. What a concept! Going away?? I didn’t mention to her, but will bring it up with Dr. Lange, that my job is supposed to involve traveling, for 10-14 days at a time. It’s impossible to do on this schedule, so we may have to reach a compromise so that I can do my work stuff – not that I feel up to international travel yet, but I’d like the option to go if need be.

So, because of my minor setback, I got my good news 4 days ahead of time. I certainly won’t complain. Made for a good weekend. I actually felt up to going out on Saturday night (after spending all day at a cancer conference) and we were able to get dinner AND go to a movie. Yippee!! And today its 69 degrees in Boston, I’m sitting here with my size 6 jeans on, a t-shirt and pair of flip-flops waiting for Pat to come home from the office so we can go absorb some beautiful spring weather, before it drops to 40 degrees for the Sox home opener tomorrow.

Later….

Mountain Climbing

No, I’m not training to climb any real mountains yet, but I did take some time to think about everything I’ve been through and realize it is similar to this type of monumental challenge. I’ve done things that in a thousand years I could never have imagined myself doing, pre-cancer. So in a way, the cancer has been a gift. I have discovered things about myself and faced challenges that if I had actual taken the time to think about, I probably would not have agreed to - 9 rounds of systemic chemotherapy, 5 major abdominal surgeries, so far 7 rounds of MA (monoclonal antibodies with no proven statistics that they are working…), not to mention last years solo trips to Taiwan, Thailand, Croatia, Serbia, etc.

So, what brought this on? Saturday Pat and I went to the “Keys to Cancer Survivorship” at Mt. Auburn Hospital. It was a really good conference. There were about 60 attendees. Dr. Lange’s keynote got it started on the right foot – a good blend of humor, encouragement, and advice. And the panel of survivors at the end of the day went very well. I was pleased with my participation. A little nervous at first and stuttered my way through the first couple of sentences, but then I found my rhythm and was able to share my story and what I have done to help us through these times. Afterwards several people came up to me and told me how impressed they were with me and how great I looked for someone who had undergone all of this. Pat was also stopped by several people, who in addition to expressing how strong I was, also praised him for his support. At the hospital today Dr. Lange told me he heard I was hit and wanted to know when my next speaking engagement was. Even the nurses who weren’t at the panel heard about me, so I guess that means the conference and I were both a success.

There were 4 of us on the panel. I was the youngest, but not by too many decades. The comment about mountains comes from the woman who spoke before me. She had battled breast cancer less than 2 years ago and this past December she climbed Mt. Kilimanjaro. Tough act to follow. When I mentioned this out loud, she said to me “You have climbed mountains – just a different kind.” I realized she was right. I don’t think I’ll ever climb Mt. Kilimanjaro – I’d settle for climbing Mt. Lafayette and actually making it to the top – long story….

Oh, and today I had treatment number 7. My rash has started to come back, contrary to what the nurses told me before, but they still say it does mean that is working. I’m just washing with Cetaphil and using my antibiotic gel. It’s not that bad in the visible areas, though my scalp is really itchy and the rash on my back is starting to spread a bit more. I also have it in my mouth again which is really just annoying. I’ve been eating lots of popsicles. They did blood work today and my counts are normal, tumor markers are within the normal range, none of which is surprising. I have a CT scan on Thursday and I will get the results on Tuesday when I meet with Dr. Lange during my 8th treatment. I’m looking forward to finding out his plan for my future, so I can start planning my future. Or at least a few mini-vacations.

Off to another cancer conference this weekend - it's called "I'm Too Young for This." It’s sponsored by the Wellness Community and Dana Farber Cancer Institute and is geared towards adults between the ages of 18-45. This is the age range we are always looking for, so we are hoping this will be a good opportunity for networking (oops…did I just say the “N” word??) Anyway, if we are miserable, I won’t feel too bad about leaving early.

Pat just came home from the movies –he saw Kung-Fu Hustle. Said it was a lot of fun and one that I would enjoy. I’m going to just take his word on that. I’m waiting for Fever Pitch though I don’t think it will be as good as the original.

OK – Though I know I will have insomnia, I’m going to try to get some sleep tonight.

Round 6 part 2

I’ve managed to write this post about a dozen times in my mind, mostly while trying to fall asleep. Now that I’m awake and in front of the computer, let’s see if I can actually get it finished. On the health front, there really isn’t a lot to report. I had my 6th Erbitux treatment on Tuesday and it went smoothly. My rash is about gone, except for my back which is an area that I can easily cover. At least I know for my next rounds what to expect of the acne and rash. It’s not something I’m looking forward to, but it’s manageable. I’m still tired and lately seem to be suffering from insomnia, not always related to my trips to the bathroom. Could be stress…Diarrhea is increasing slightly so I am switching between codeine, tincture of opium, Kaopectate, and Imodium. We’re keeping an eye on it because it could be another side effect of the Erbitux.

My hospital visits for the next 2 weeks include my last 2 scheduled Erbitux treatments, on April 5 and 12, a CT scan on April 7, and my follow up appointment with Dr. Lange on April 12. We might have to rethink the Dr. Lange appointment as it falls right after my Benadryl dose during my Erbitux treatment which means I probably won’t be able to keep my eyes open. We don’t expect the CT scan to show anything new, so the decisions we make will be based on tumor markers and gut feelings.

I must admit that even I am starting to think that my whole life revolves around cancer and my treatment. This weekend we will be spending Saturday at Mt. Auburn Hospital attending a conference on cancer. It’s the first time the hospital has sponsored such an event and it stars everyone on my team. Dr. Lange is giving the keynote, Dr. Nauta, my surgeon and Dr. Abner, my former radiation oncologist are also speaking, the social work team of Beth and Annabelle are giving one of the breakout sessions, and last but not least, I will be speaking on a panel of survivors. This will be my first time doing something like this. I’ve participated in support groups and spoke one on one with lots of people on cancer and my experiences, but never in a large setting. Actually there will probably only be about 60 people there and I know most of them anyway, so I’m not really anxious about it. I just need to find some time to organize my thoughts and summarize everything in 10 minutes. I think this will be a good opportunity for me and possibly lead me to other events. We’ve always been on the outer perimeter of the cancer community in Boston and it may be time to step inside that circle.

As I was starting to say before, our whole lives do not revolve around cancer and my health. We will find some time this weekend to see some friends, explore Portsmouth, NH and take a cooking class at Attrezzi http://www.attrezzinh.com/index.cfm. Should be fun – and tasty. We were able to see friends on Easter, had a relaxing brunch and even took in a movie. And Wednesday I made a quick trip to Mass General to see new Mommy and Daddy, Hara and Paul, and their beautiful daughter Gillian Rachel. Congratulations!!!

I’m working as close to full time as I can, and starting to think about taking on some travel once again. I will be going to Marco Island, FL for a company meeting in early May and there is the possibility of another trip or 2 within the US. I’m not sure if / when I’ll be ready to take on international travel. Pat’s company is talking about expanding to Hawaii. We both volunteered to help open that office.

Speaking of Pat's job, check out the article in USA Today.

http://www.usatoday.com/travel/destinations/2005-03-31-citypasses-go-cards_x.htm

With a follow up at

http://www.usatoday.com/travel/destinations/2005-03-31-citypasses-side_x.htm

Time for bed - hopefully tonight I will sleep.

Round 6 is complete

I’m at work and actually quite busy, which is a good thing so I just have time for a very quick post – Round 6 is now done. I am feeling OK, some sleep issues last night and taste bud issues today, but nothing debilitating. Lately, however, I’ve felt it necessary for Pat to be awake when I can’t sleep, so I think he might beg to differ on the debilitating comment. He’s not getting much sleep these nights either.

OK – back to the grind. More to follow when I have some down time.

Recuperating and relaxing…

At least that’s what I would like to be doing. I’m feeling a bit run down after this latest treatment. Could be because I pushed myself a bit too far on Wednesday (a 10 hour work day was probably not my wisest idea), but I felt good while I was there. I still have a problem with my taste buds on Wednesdays – nothing tastes good, so I tend to be cranky and ornery by the end of the day from lack of food and drink. I was quite happy to be working from home on Thursday, but it was still a full day and I haven’t been able to regain my energy.

The changes I’ve made to my diet have definitely had an effect. I’m not good at sticking to any particular regiment, so I’ve only made some adjustments and additions here and there. Peanut butter for breakfast, power bars for snacks, etc. My attitude is that this disease has interfered with so many aspects of my life that I want to continue to eat foods that I enjoy, even if that means sometimes it makes me miserable. I've sacrificed enough. Thanks to everyone for their suggestions – I’ve taken them all into consideration. My trips to the bathroom are status quo – not increasing, but not getting any less. It’s still very frustrating though I’m not losing any more weight, as far as I can tell.

Fortunately, I’ve noticed that some of my energy levels have increased. Once I get up and get going, I’m able to stay going for longer. Last weekend we took a drive up the coast and a long walk along Crane’s Beach. Winter beaches are one of my favorite places. It was obvious that it was the first nice day in a while – everyone was out enjoying the sun with their families, dogs, and even some horses. The temps were in the 40s, but at least it wasn’t snowing.

I’m looking forward to the coming weekend - a chance for catching up on sleep and maybe even some down time. No big plans for us. All travel has been curtailed until we have a better idea of how many rounds of treatment I will be going through, and how many weeks I will have off between treatments. We meet with Dr. Lange after week 8 of treatment and we’ll find out then. Typical course of treatment is 12 weeks on 8 weeks off. Once we know what the future plan is, I can start planning more vacations. We’ve been home for over 2 months now – time to accumulate some airline miles! Of course, that would mean that Pat would have to be able to get away too. His job is great, but keeps him really busy – and has him working long days. We both spend most evenings crashed on the couch – or me on the couch and him in front of his laptop working until the weeee hours. http://www.smartdestinations.com – let him know if you are going to be in Boston or San Francisco.

Another Round Down

Round 5 is under my belt. My face has cleared up almost entirely. The nurses said that the rash and acne usually disappear around week 6 or 7, but because of the week off and the lower dose mine cleared up a little sooner. Its still on my back and chest, but these areas are at least bearable. I’m also noticing some new dry patches popping up, but nothing too severe.

Just wanted to post a quick update - I’ll write more later when I have a bit more energy and can string more than two sentences together.

Round 4 at last!

What a difference a week makes. By the time I arrived at the hospital on Tuesday for my treatment, the rash/acne on my face was 100% better than it had been the week before. That’s not to say it was completely gone. My chest and back are still covered and itchy and my face is not as it was before treatment, but even I have to admit it’s barely noticeable now. I’m not scratching my scalp like I was before, though my ears are still not free of bumps. Of course I probably just jinxed myself and will wake up this weekend with new bumps, rashes and acne.

I had to switch my treatment schedule back to Tuesday afternoons (from the mornings) as we all agreed it would be best if Dr. Lange could see what state I am in before each session. This week he took one peek, gave the thumbs up and they hooked me up. I don’t hide it well when I am miserable, so it’ll be pretty easy going forward for them to judge when I can handle treatment and when I can’t. I’m hopeful I will be able to get through the remaining 4 treatments this round without any more delays. In addition to the week off, they lowered the dosage. I actually don’t know what the initial dosage was, so I didn’t bother to ask what they lowered it to. I trust Dr. Lange to know that he probably took it down just one notch – enough to keep the potency and effectiveness, but backing off enough to calm the side effects.

Speaking of side effects – aside from the acne/rash, I’ve been pretty lucky. That’s not to say I haven’t had any, but the ones I’ve had aren’t as bad as I expected. My worst day seems to be Wednesday – I’m usually exhausted and unable to eat or drink anything. I find myself unable to sleep on Tuesday nights despite the huge amounts of Benadryl that I get during treatment; in addition my taste buds seem to be affected by the steroids that follow the Benadryl. Fortunately this only seems to last a day. I usually crash hard on Wednesday evenings and by the time I get up on Thursday, food and drink taste OK again. As long as this only lasts for one day, I can deal with it. I know by now that the fatigue is just something that I am going to have to deal with on a daily basis.

That’s all for now – I just wanted to get something posted as I realized that my last post past the one week mark and thus fell off the front page of Gasbarro.net. Time just got away from me this week – but thanks to everyone who checked in with me to make sure I got through this past Tuesday.

Round 4 - NOT

I may have spoken too soon in my last post. The side effects continued to annoy me and cause sleeplessness, itchiness, etc. The rash and acne spread from my chin to much of my upper body – cheeks, nose, forehead, eye, ears, neck, scalp, chest and back. I appreciate everyone’s advice and now have a plethora of facial cleansers, creams and lotions. Having been through chicken pox 3 times (yes it is possible to get them more than once…don’t ask how I ended up with it 3 times) I know the soothing power of Aveeno and have been using it faithfully. The only area that I can’t use it on is my scalp, so I’m still looking for something to stop that itch. The dryness is subsiding a little, but is being replaced by acne. I suspect some of the creams I used may have clogged my pores – I guess it’s a tradeoff. I got a prescription for an antibiotic ointment that should help clear up some of the rash. I have also become the first patient on Erbitux at Mt. Auburn to have the rash in my eye and to get mouth sores. Nothing in the literature mentions mouth sores, which usually means that they did not appear in any of the patients who used the drug during its clinical trials. However, having had these sores during chemo, I know what they look like and that’s what I’ve got. Not much can be done about them and thus far they haven’t interfered with my taste buds. Add this all together and what do you get?

Postponement of week 4 of treatment. I arrived at the hospital and before they hooked me up, the nurses examined my face, back, scalp, etc. Dr. Lange took one look at me, said I looked like a teenager (while I like being told I look younger than 34, I’d rather not relive my teenage years). Everyone was in agreement that while my rash and acne is not the worst case they have seen, my system needed a break. A week off from treatment will allow the acne a chance to clear up a little and hopefully help the itching subside. I will resume treatments next week (that will now be week 4) at a slightly lower dose. Hopefully this will not affect the overall effectiveness of the drug. This is something we will discuss at the end of this round of treatment. I really don’t want all of this to be for naught. The more Erbitux I get, the better the chances of slowing the tumors.

I’ve been making some dietary changes and while I haven’t noticed any significant increase in my energy levels, there have been some minor improvements. I was able to take the bus and train to work yesterday, work a full day, go to a book club meeting, walk to Pat’s office and finally gave in and took a cab home. Last week I never would have made it to the end of the work day. Fortunately these changes haven’t seemed to impact my diarrhea issues. I still have it, it’s still chronic, but it’s also still under control and coming in at less than 10 episodes a day. I don’t seem to be losing any more weight and I’m keeping my fingers crossed that I things remain status quo for the next few weeks. By then I might feel like buying some new spring clothes, but first the weather has to cooperate.

I’m sitting in my living room as I write this – its March 8th and the weather report calls for 7 – 8 inches of snow tonight. It was 45 degrees earlier today when I left for the hospital. It’s now 30 and supposed to drop as low as 13 tonight. ENOUGH ALREADY!!!!!

3 Rounds Down

I had my third Erbitux treatment this past Tuesday and I am slightly less miserable than I was when I wrote my last post. No, the side effects haven’t diminished, I think I’ve just started to get used to them. Before treatment this week the nurses (Millie and Susan, both of whom know me from way back) checked in with Dr. Lange to make sure he wanted me to go ahead with the next round despite the rash. I asked what would happen if we skipped the week. They said the rash and dry skin would get an extra week to heal before the next treatment, but once I had that next treatment it would start all over again. This did not sound appealing to me so I asked them to pass my desire to push on to Dr. Lange. He agreed and so I settled into my chair, put my feet up, popped my iPod on and let them hook me up.

2.5 hours later I was finished. This week I switched to morning treatments, but because of the rash and acne, I made an afternoon appointment for next week so that Dr. Lange can see it for himself. The nurses said mine was not the worst they had seen, but it becomes an issue of how uncomfortable it makes me. So here I am at the 3.5 week point and I can see some aspects of it getting worse. My cheeks are definitely redder, and my skin is drier. Overnight is worst – when I awoke this morning it looked like you could peel an entire layer of skin off my face. A shower did not help. Water seems to bead up and bounce off my face rather than be absorbed. It’s not stopping me from showering though. I apply moisturizer and lip balm every hour or so. My chin seems to be the only facial area to get the acne portion of the rash. The rest of the acne has shown up in my scalp (talk about itchy!!!) and on my upper back. Since no one other than Pat sees these areas, I don’t mind it as much. I’ve tried a few types of moisturizer, but am sticking with my Kiehl’s because I’ve been using it for a few years with no problems and I’m afraid if I try something new that it may cause an entirely different reaction.

I thought the morning treatment might help me with energy levels for the rest of the week, but I was wrong. They pump me so full of Benadryl and steroids (not to mention the codeine I’m taking to slow down my digestive process) prior to the Erbitux that my system doesn’t know what to do. This week I came home from treatment, fell asleep for 4 hours, then couldn’t fall back asleep that night so 5AM Wednesday morning arrived and I was still awake. Needless to say it was tough getting into work. I’m still deciding whether or not I need to decrease my work week to 3 days, but for now I’m going to continue trying for 4 – even if that means I have to come home from work, take a nap, and then finish up some stuff from home. This system can work pretty well for me since I working with folks from all corners of the globe so it’s always a workday somewhere in the world.

I haven’t noticed any significant changes in my energy levels either increasing or decreasing, so I guess that’s a good sign. I’ve started to make some diet changes, increasing my protein and so far it hasn’t increased my diarrhea too much, so I’m going to push forward with it. I’m still coming in at under 10 trips a day to the bathroom so I’m cautiously optimistic that I may not get hit with that side effect.

I want to thank everyone who took the time to read my last rant and then forwarded me diet suggestions, moisturizing suggestions, and words of encouragement. I appreciate all of it and am trying out most of them.

Chocolate Penguins Revisited.

It’s taking me a lot longer than usual to post my own update – yes, I’ve been busy with work and socializing, but the main reason is the fatigue. I don’t have the mindset to write a witty blog entry, so just some honest ramblings will have to do.

I’m tired – all the time. I go to sleep at night and wake up in the morning and I’m still tired. Am I sleeping too much, too little, not deep enough? Who knows? We’ve analyzed this until we are both so tired of analyzing we fall asleep. I do know that I’ve lost 30 pounds since before the surgery and it can’t all have been good. Yes, I had gained weight before the surgery so it was good to get some of it off. I’d like to stop now please. My pants are falling off – and I just bought them a month ago. I complained before the surgery when I had to buy new pants because I could no longer button my old ones. Now I can’t wear the ones I bought pre-surgery because they just slide right down to my ankles so I’m trying to wear the pants I bought last year, pre-weight gain. I don’t enjoy clothes shopping anymore. I’m tired of it…

Anyway, after talking with some health care professionals and mentioning the fatigue, lack of energy and overall feeling of blahh…and mentioning the weight loss, we all sort of came to same conclusion. I’m not keeping nutrients! AH HA!!! But carbs and starches are the only foods that don’t run right through me, so the trick is finding the foods that stay with me a little while, provide me with the nutrients I need and somehow satisfying an increasingly picky palate. No wonder I’m tired – it takes too much work just to decide what to have for breakfast. I’ve now got a list of high protein foods, have added protein bars to my snack list and am hoping for a miracle – or at least a little energy. I sort of wonder what would happen if I drank a can of Red Bull. I’m guessing I’d fall right asleep.

Someone suggested I talk to a nutritionist. Been there, done that. They come to see me every time I’m in the hospital. Always a 20something, wearing a size 2 and telling me that I need to eat more vegetables and cut out all my safety foods like potatoes. Do they even bother to look at my chart and see that I don’t have a whole lot of intestines left? I try explaining to them that I’ve been doing this since they were in grammar school; I think I know more about my body than they do. They don’t usually make a return visit, though they try, unsuccessfully, to control what I can pick from the hospital menu. Fortunately I have friends in higher places and I get my potatoes back.

The good news is that my system does seem to be slowing down. I’m definitely under 10 trips to the bathroom per day. And I have the occasional incredible day where I only go 3 or 4 times. Unfortunately we’ve yet to figure out what the pattern is, so it’s not like I found the solution and can pick that diet for the rest of my life. (Last week, I was feeling miserable and sorry for myself, so I went to Wendy’s for lunch. Was going to get a baked potato, but at the last minute got a double (not even just a single) with cheese and all the fixings. I skipped the fries, but did have a Coke. I fully expected to spend the rest of the day in the bathroom. I didn’t go for over 6 hours. The next day I ate bowl of oatmeal, as I had done every morning for the past month, and spent almost 2 hours running back and forth to the bathroom….Go figure!) I just keep trying everything and watching to see what reacts more than other stuff. At least we have 20 chicken breasts in the freezer to play around with and figure out the best way to prepare those.

This is turning out a little longer than I anticipated – guess once the flood gates open it’s hard to stop the flow.

Next complaint: Side Effects from the Erbitux. They have arrived. It started last Friday with a little dryness around my eyes. Now my face feels like the Sahara desert and every time I move my lips and think about smiling, I can feel it cracking. My scalp itches and hurts at the same time. Cold weather hurts more than you can imagine. I stepped outside, got hit by a blast of cold air and immediately started to cry. Salt water from tears – VERY PAINFUL. I’m heaping on moisturizer (with SPF because the sun is evil and will make this worse), my chin is covered in white heads that itch like mad, I think I may have to lose the contacts soon because not only does it hurt to put them in, my eyes are so dry that they are becoming painful. Lips are peeling and cracking. I slather on lip balm, but it doesn’t seem to penetrate the dryness. Did I mention my nose? It’s red, raw and peeling. And it bleeds. I never have bloody noses, but now every time I blow it’s bleeding. I bought saline spray to try to keep it moisturized. And Pat tells me that it has started to appear on my back. So far, that part is just itchy.

However, everyone tells me it doesn’t look bad. And they are right; it doesn’t look bad - yet. I can cover some of the redness with a tinted moisturizer. I try not to smile and cause more cracks. I’d like to have a positive attitude and say this is the worst of it, but I can’t fool myself. There is more to come and it’s not going to get better. I’ve increased my water intake to try to add some moisture back to my skin – but of course that means more trips to the bathroom because of my tiny bladder (shrug…)

I see the nurses tomorrow and hope they have some suggestions – I know its all trial and error, but since they’ve been working with this drug for almost a whole year now, they should have some answers. Tomorrow’s treatment is in the morning – which means I should have all afternoon to catch up on sleep.

OK – got that all off my chest. I feel better now.

Oh, the chocolate penguins. As many of you know, penguins are my favorite animal, and I like the occasional penguin knick-knack. Pat found chocolate penguins at Burdick’s (an amazing chocolate store in Harvard Square) which he brought to me and I very much enjoyed receiving and eating.

Later,
Jean

Mmmm. Chocolate penguins. Mmmm.

Jean had her second treatment today. Two down, six to go in this round. Exactly how many rounds she'll undergo is still unknown. Her infusion went smoothly, uneventful, even boring. In an oncology ward, "uneventful" is good. Just one side effect so far – total exhaustion. Like many forms of chemo, it strikes the body’s natural metabolism. Many patients compare it to aging 50 years in a day. We’re reaching for synonyms for “tired”: wiped out, drained, busted, enervated, de-energized, and lethargic. Feel free to share your suggestions with us. That's what blogs are for.

She’s sleeping a lot right now, but plans to continue working throughout treatment as long as the side effects allow. She’ll write an update on the blog over the next few days. Be sure to ask her about the penguins.

Frozen Peas and Corn

Not frozen mixed veggies or carrots, just the peas and the corn, separately. Those are the vegetables we were advised to purchase to use as ice packs on my latest incision. So we bought them and they work well – however, transferring them to an ice bag was not a wise idea – today all I smelled was corn. I think I’ll leave them in their own bag tomorrow. They told us to throw them out when we were finished, not to eat them - I'm not sure we would have even thought about eating them.

I’m in a relatively good mood today – is it the pain meds or the fact that yesterday went smoothly? I don’t really know. Yesterday was a long day. I was up at 6 and at the hospital by 7:15. I sent Pat to work since all he would have been doing was sitting around waiting and he’s done enough of that at Mt. Auburn. I went to radiology to the “specials” department to have my port installed. They do it as sort of a walk in procedure as opposed to day surgery. Anyway I already knew most of the team at specials since they had put in my previous 3 pic lines. So it was like old home week while I was getting prepped for the procedure. They want you to feel no pain, so while I was not anesthetized, I was made to feel very relaxed and don’t recall too much about the procedure except that we all agreed that Six Feet Under was a smart and funny show and we are anxiously awaiting the next season’s release on DVD. Oh and for the first time ever, someone uttered the words good and vein when talking about me. Apparently the only vein in me that has not been compromised over the past 5 years is my jugular. I guess that’s good news.

3 hours later the port was in and I have 14 dissolvable stitches in my chest and 2 in my jugular vein. These will be removed next week. I look like a vampire tried to take a bite out of my neck. My arm, shoulder and chest ache –sometimes a dull throbbing, other times I feel like someone shoved something under my skin, oh wait, that’s what they did. They say the pain will lessen over the next week. I believe them.

After a brief nap, the lovely nurses in radiology gave me a wheelchair ride up to Oncology/Hematology where my room was waiting for me. Again, it was like old home week as everyone was “glad” to see me. Glad being an odd choice of emotions, but the fact that there is some form of treatment available for me makes us all happy. However I think everyone would be happier if I never had to visit Wyman 3 again. Anyway, they sat me down and hooked me up. It was really nice not to have to be stuck several times – I didn’t even realize they had me attached to my first 2 infusions within 5 minutes. Before they administer any chemo or Monoclonal Antibody (MA from now on) they give you a large dose of Benedryl and a steroid. Beth, one of the social workers who knows me from way back, was in chatting and as I have many times during her visits (no reflection on her just the state that I seem to be in when she comes by) I was asleep in10 minutes. I woke up for the changeover to the Erbitux.

Pat arrived about this time and he kept me company by watching me sleep some more and then letting me beat him in cards. I also managed to eat lunch while sitting there, something I had never been able to do with the chemo, so perhaps this is a good sign. I didn’t feel anything except tired during the infusion. After the 2 hours, I had to just sit for an hour and be observed because apparently if you are going to react to the drug it will be in those 60 minutes. They require you to do this every infusion. I don’t have a problem with it. During the 4 hours I was there I couldn’t concentrate on anything, but I think that was just a combination of all the drugs and the stress of the morning. I think next week will be the baseline for future treatments.

I know I have 7 weeks of treatment remaining on this round. We don’t know how many rounds I will have or how long future rounds will be. The usual course is 12 weeks, but I think Dr. Lange is taking it a bit more slowly with me. If the diarrhea side effect kicks in for me, it will be a deal breaker – we all know I can’t afford to lose much more weight using this method. I don’t expect the CT scan at the end of the 8 weeks will show much – so I assume my appointment with Dr. Lange at this point will be to discuss how I am tolerating the Erbitux, what side effects I am experiencing, and deciding between us whether or not it’s worth continuing. But I’m jumping too far ahead.

I should have a pretty easy week. They say the side effects take about 2 weeks to kick in. I am still hoping not to get this side effect, but it seems to be a certainty that I will and unfortunately there are no drugs or treatments that can be used to treat it. One thing I learned however, was that it’s not permanent and it doesn’t necessarily last the entire length of the treatment – it may appear in the 2nd week and last until the 5th or 6th. No use speculating until I see what happens. We are all hoping I can avoid the diarrhea side effect, but I stocked up codeine, kaopectate, immodium, DTO (tincture of opium) so I am ready for it. I also bought lots of carbohydrates and binding foods.

I am now on an official 4 day work week schedule. 2 days in the office, 2 at home and 1 (every Tuesday for the next 7 weeks) at the hospital. I hope to be able to keep this up through the treatment and maybe even increase the number of days I am in the office. I won’t push too hard though, because I know my body is still recovering as it likes to remind me every once in a while.

That’s all for now – I’m hungry and its time to find some carbs for dinner.

Thanks for the prayers and well wishes – keep them coming!

1st Erbitux Session Was OK

Jean's sleeping it off right now. It was a long day for her, but it was OK.

She went to the hospital at 7:30 and into day surgery for the port catheter (called "Port A Cath"). Having a permanent line into her bloodstream will save her the hassle of being stuck like a voodoo doll when they need to draw blood or administer drugs.

After they installed the Port A Cath, she went upstairs to Oncology and they started administering the Erbitux around noon. Strictly speaking, it's not considered chemotherapy (it's a monoclonal antibody and is considered a different modality from chemo), but it looks like chemo and that's quicker to say than "monoclonal antibody."

It took 2 hours to administer the Erbitux. Afterward they observe her for an hour to ensure she doesn't have any strange or unexpected reactions. Everything went smoothly. She even had a few visitors, mostly nurses and social workers we know from previous stays. This is our version of "Cheers," where everybody knows her name.

She'll receive Erbitux once a week (roughly three to four hours each day) for the next seven weeks. At the end of seven weeks, she'll get a CT scan to see what, if anything, shows up. She'll also evaluate how she's tolerating the side effects of the drug.

So she's doing fine tonight, but she's sleeping off the long day, the activity, and the painkillers they gave her. We expect her to be up and around and talking with people tomorrow.

Thanks for reading!