Catching Up Part 2

I took a break from doctors for the month of December after a disappointing follow up appointment with Dr. Robinson, my gastro. Both parties were disappointed at the appointment – he with me because I had not done TPN (IV feeding) and me with him because he didn’t have anything to offer me. I knew going in to the appointment that there is no miracle drug that will help with my overactive bowel, but I was hoping for some useful suggestions. He seemed stuck on the TPN and I have decided this was not the route I wanted to take. Dr. R thought that if I gained a few pounds that it might be enough to supply some much needed nutrients to my intestines and jump start them into functioning properly. While I agreed with the logic, I disagreed with the thought of TPN.

It would mean 12 hour infusions several nights a week (I had already talked him out of every day infusions). These nightly hook ups would start as early as 7pm curtailing any evening social life, the possibility of infections was a given, and last but most important, it would mean no full nights sleep for either Pat or me. I’d have to get up to go as much as 5 or 6 times a night, maneuvering a pole and not strangling myself or Pat with the tubing. It was not a decision I came to easily, but one that Pat and I agonized over for weeks. After weighing the pros and cons, I reached the conclusion that TPN would definitely affect my Quality of Life. We long ago reached the decision that Quality was more important than Quantity and Dr. Robinson just didn’t know me well enough. He made a comment along the lines that I was playing 2 doctors against one another and that I had already made up my mind on what course of action I wanted to take. This was said after I asked him about “Sandostatin” the injectable medication that I was on during my Erbitux treatments. I wondered aloud as to whether or not this would be worth trying. Dr. R said he didn’t think it would be effective and that he personally was hesitant to prescribe it. I can’t recall right now what his reasons were, but they were enough to convince me that I really didn’t want to be a pin cushion again.

So at the end of this very frustrating appointment, we outlined the plan:
1. I would take a few more weeks to try to gain weight without TPN and we’d revisit the subject at my next appointment in January.
2. I would continue to take my medications on a regular schedule to keep the diarrhea under control. (That would be Kaopectate, Diluted Tincture of Opium, and Apple Pectin…quite the combo).
3. I would talk to Dr. Nauta about starting Sandostatin injections. Huh?
Wait a minute, Dr. R doesn’t think Sandostatin will work; he convinced me of this, yet all of sudden he is telling me that I am going to do them under the care of another doctor. I never asked this, never considered it and was more than willing to let the mater rest after getting Dr. R’s opinion. Pat quickly jumped in and said “No, per the conversation we had 15 minutes ago, we won’t be pursuing Sandostatin. We just wanted your input about it.”

So needless to say I walked out of that appointment in tears. This doc was really getting to me, but he was my only hope. I know that I can be quick to judge and to hear only what I want to, but in this case I really was willing to do whatever he suggested as long as it has the possibility of decreasing my diarrhea. Somehow I think it got lost in our appointments that my initial reason for seeking him out was that I heard he would be the best for helping control (not CURE) my diarrhea. He seemed to think I was there because I wanted to gain weight. Well yea I did, but what I REALLY wanted was to go to the bathroom fewer than 20 times a day.

Oh and time for a quick rant – has anyone tried to find Kaopectate in pill form lately? It’s near impossible – the liquid is still out there but pills? No dice. Liquid form works a little quicker but
1) It tastes like liquid chalk (I know this because as child I used to be curious about what chalk tasted like; (I think there used to be a commercial on TV that showed chalk soaked in some sort of liquid and it made me curious) so I tried to eat chalk).
2) The bottle is big and bulky and not easy to slip into a purse or take on a plane
3) Pills are more discreet when taking them in public
So it turns out the one drug store that still carries the pills is Brooks. Have I mentioned that I am really impressed with the customer service at Brooks and that have bent over backwards to help me out? In early November I tried to refill my DTO (diluted tincture of opium) and codeine prescriptions for the first time since moving to Holliston at both CVS and Walgreens. Neither were able to obtain the medication from their distributors and one pharmicist had no idea what it was and had to look it up. At both stores I heard the pharmacists mutter something about DTO being an old fashioned remedy that no one prescribed anymore and then proceeded to treat me like I had drug seeking behavior. One even went so far as to suggest I ask my doctor to consider something a little less “addicting”. At wits end I finally called Joe the pharmacist from Brooks in Somerville. He not only filled the present script for me, when I explained what had happened and that I now lived an hour away, and broke down in tears, he took pity on me. He located a Brooks in the town next to Holliston where they could view my 8 year prescription history with Brooks. Joe called the pharmacist at the Medway store explained my situation and told her that I would be in the following month for a refill. Two refills later, the pharmacist in Medway knows me, keeps DTO in stock for me and has been wonderful. So I’ve switched back to Brooks even though it’s not the most convenient, it definitely has the best customer service of any of the drug store chains. And they are the only ones to have Kaopectate caplets on their shelves which I buy each time I am there, to tide me over until my next order from drugstore.com comes in. They come in a box of 20, and I take 12 pills a day, do the math…

Now it’s the beginning of February and I have not yet seen Dr. Robinson. Mostly because I decided that he didn’t want to help me so there was no point in going forward with him. Then tow weeks ago the nutrionist from his office called to “check in”. I ended up talking to her for a good 30 minutes during which time I told her that I felt that Dr. Robinson didn’t want me as a patient and so I decided for now to suffer and keep taking my meds and playing with my diet. Fortunately she lent me the sympathetic ear that I needed and by the end of our conversation I decided to go see Dr. R one more time. And the good news is that I will go in to his office weighing 7 pounds more than I did the last time I was there – weight that I gained ON MY OWN, without TPN! Guess all the Christmas cookies paid off. I feel better and have a little more energy, am making a few less trips per day to the loo, have had fewer “emergencies” and spent less time on my sitz bath. So there will be no misunderstanding when I walk into his office again, my agenda is to decrease those bathroom visits to fewer than 15 per day and not to gain weight. I’m quite happy at my current size, I have clothes that fit and I like the way my jeans look (though it has become apparent that I need to return to the gym and get some tone…) Pat and Dr. Lange both feel I should have a few more pounds - a cushion per se, for my next recurrence. We’ll work on it. But first we want to get me down to less than 1 roll of Charmin Ultra per day.

I have an appointment with Dr. Robinson next week. February is looking like a busy month of doctor appointments for me, but I’m getting the hang of multi-scheduling so that I don’t have to drive back and forth to Cambridge more than once per week. I must admit I haven’t missed that drive these past few weeks. It was a well deserved break.

Still more to add, but I’ll wrap for now.

Catching Up Part 1

Since I’ve been away for soooo long I’ve got A LOT to say. None of it is very exciting. There is nothing “new” and no major decisions or changes looming, but I started to write and the next thing I knew, I had 5 pages…Since that would make for a very unwieldy blog entry, I decided to split it up into several parts. So without further ado here is Part 1.

I had my 6 month CT scan and bloodwork done in November and it showed no changes since the last scan and blood markers remained stable. Dr. Lange and I spent more time talking about where I might find clothes to fit me than the results of my tests. He did voice some concern over the weight issue and I agreed that it was a problem for me as well. I told him that I was working with a gastroenterologist at Brigham and that so far nothing we had tried had much effect. He suggested I try to find out what the first astronauts diet was and perhaps that might be good for me. At first I was like, huh? Astronaut diet – don’t they eat freeze dried food and MRE’s?? But then I realized he meant the diet they eat prior to the mission. in the early days of space travel bathroom facilities were difficult if not near impossible to use not to mention the problems the space suits posed, so they (the astronauts) would eat a diet that would bulk them up and constipate them. Though the NASA website is quite interesting and interactive, I haven’t yet found what I need, but being a librarian I will persevere.

The only other point of interest that we discussed was Panitumumab (Vectibix) which is the newest monoclonal antibody that obtained FDA approval for use with colo-rectal cancers. We had talked about this drug last year when it was in trials and re-visited the topic this time. Basically it’s a fully human version of Erbitux (which as many of you may remember was part mouse antibodies). The results thus far show that it causes fewer side effects. Our conversation went something like this:

Me: “Oh yea, I heard Panitumumab got FDA approval and is now available.”
Dr. L: “ MmmmHmmm.”
Me: “What are your thoughts about it?”
Dr. L: “What do YOU think about it?”
Me: “Not interested – Erbitux didn’t seem to work, and don’t feel like suffering through all those minor side effects again.”
Dr. L: “I agree, I wasn’t going to suggest it. You need a break and I don’t have confidence that it would be effective given your reaction to Erbitux.”
Me: “Great, glad we are on the same page”
Dr. L:” Have I mentioned lately how amazing and strong you are?”
Me: blush, blush…

So the decision is to “Stay the course” and not try the newest drug. I mentioned that I haven’t felt “good” in over 3 years and I would just like to have a little bit of time where I am healed from surgery and not suffering through any form of treatment. We all agree that this is probably the best medicine for me. So, for now I will keep in touch with a few people I know who are doing the Panitumumbab thing and see how they do. I was glad Dr. Lange and I talked about it and that we agreed on the current plan of “scan, wait and see”. I know that if I change my mind, all I have to do is say the word and we’ll give it a try. That’s Reason # 1,000,385 that I love my medical team.

November and December were busy months. Pat was traveling pretty much every other week and in early November I made my first work related trip in over a year. It was 4 days of intercompany meetings in Toronto. I figured it would be a good test of my stamina to see if I was ready to hit the road again. I left Boston on a Sunday afternoon (at least that was what my ticket said - after a cancellation, weather delay and overbooking it was early Monday morning before I arrive at my hotel…)and spent the next 4 days running ragged. My days began at 7 (or earlier) and went until 10 or 11pm. I took breaks when I could sneak them, but I knew I had to push myself to get the most out of the trip. I arrived back home on Friday afternoon and didn’t get out of bed until Monday. I realized it was too much too soon. But I did survive, I didn’t embarrass myself and at least I tried. I decided to back off a little and continue with my “no travel” attitude for the time being. Pat is enjoying all of his travel and is getting to know the ins and outs south of Market in San Francisco.

As we have done for the past several years, we decided to stay home for Thanksgiving and spend the day with our friends who are our extended family. We got a fresh bird from the local turkey farm, Pat studied the latest issues of Cooks Illustrated and we all enjoyed a juicy turkey with all the trimmings. I am finally willing to admit: A) There is no comparison between fresh and frozen turkey AND B) Brining, brining, brining. I am so lucky that Pat loves to cook (and clean up!) and while he enjoys experimenting with new dishes, he realizes there are some traditions that should not be broken (canned cranberry sauce anyone??). And to make the weekend even more perfect there was enough leftover turkey, stuffing, and cranberry for my day after sandwich. Yum!

The month of December was quickly upon us and we had a great time getting our new home ready for the holidays. As anyone on our Christmas card list knows, we had some fun with the decorating (of home and shed) and are now planning on making this an annual tradition. We’ve got some thoughts brewing about next years holiday card pose. Suggestions are welcome.

December 15, 2006 marked the 7 year anniversary of my first surgery and technically my initial diagnosis (though I didn’t hear the c-word until that following January). I celebrated by attending nephew Keagan’s 2nd birthday party. It was the best medicine for me – spending a few hours with a bunch of 2 year olds and their older siblings, all hyped up on sugar. I plan to repeat the tradition next year.

The holidays were nice, a bit hectic at times but all good. Pat and I agreed it was one of our best Christmases ever. Some of this was because of the big changes in our lives (the house, Pat’s job, my beating the estimates and getting use of my leg back months before the docs estimated) but we agreed that our overall attitude changed because we’ve finally accepted this path we have been given to follow instead of trying to find a way off. We are going to wait and see where it leads us. We know that we can get around any hurdle that is tossed in our way; the past 7 years have more than proved that. So we decided to embrace our newfound calm and enjoy each other – surrounding ourselves with family and friends.

Pat managed to sneak in a few hours of skiing before Christmas after which we returned to RI where we gorged ourselves on the traditional 7 shellfish Christmas Eve dinner before going home to spend the night. It was the first time in 9 years that I got to wake up in my own bed on Christmas morning . Then it was back to RI to spend the day with the family – with 4 nieces and nephews under the age of 7 you can imagine the excitement. Though we weren’t with them first thing Christmas morning we did spend much of the day with them and all their new toys.

We rang in the New Year in the company of old friends, hosted a New Years Day brunch for a dozen of Pat’s college friends and their families including one of our adorable goddaughters and her parents. It was nice to have the space to have guests, to host a party and parking for all! And then the holidays were over and it was back to work and the usual distractions and activities.

Pat and I were both grateful to put 2006 behind us and start fresh in 2007. No resolutions for us, just lots of plans to make the most of each and every day.

To be continued....

Happy New Year

Just wanted to wish everyone a happy, healthy 2007. Things here are fine - same old, same old, status quo, etc. I'll be back shortly with a real update.

B.R.A.T.

Pat and I are getting into the swing of being homeowners. We are getting used to using our weekends for household tasks instead of meandering aimlessly around New England or seeking out new restaurants. Though we did fit some relaxation time in, we also managed to finish up a few tasks around the house. I am really amazed at how much we’ve done in the short time we’ve been here. Thanks to lots and lots of help from my parents, Pat and I were able to paint the 3rd bedroom in a color that I think I like – at least it’s growing on me. (I wanted terra cotta - first attempt came out too Halloweeny, this time it’s a rusty reddish color.) It’s nice to have the majority of the painting done. All that’s left is for me to convince Pat that it will be best if we hire someone to paint the remaining rooms (there are only 2) and both have 18 foot ceilings.

Then we hung the bedroom curtains – yay! No more paper shades. The temporary shades were great and did the trick, but it is nice to pull the curtains closed at night and not hear any paper rustling if the windows are open. Plus it’s the first real window treatments we’ve bought in our 8 years together which means we finally agreed on something. It’s actually a significant accomplishment for us – just ask the clerk in the curtain store, the members of our cancer support group, our close friends and anyone else who has had to listen to me complain about my husband’s interest and eye for window treatments. And then there was the shelving we installed in the cedar closet. After emptying all the plastic tubs full of clothing, I discovered that I am clothes horse. I mean, it’s really ridiculous the amount of clothing I own. However in my own defense – my weight has done a lot of see sawing over the past 6 years. It does seem extreme that I have stuff in sizes 0 through 12, and don’t want to get rid of any of it. And now that I’ve got the closet to store it in, I don’t think I will. But this is a good segway…

B.R.A.T. diet. Yup, I’m supposed to back on a modified version of this. (Bread, Rice, Applesauce and Toast) Pat and I met with the gastroenterologist recommended by Dr. Nauta. Specifically this guy runs a weight clinic at Brigham and Women’s Hospital in Boston. We spent about 1.5 hours with him and his dietician. Going over my history and trying to formulate a plan. Let’s just say that I walked out a tad bit disappointed because there is no miracle pill or diet that is going to stop my diarrhea. It’s going to mean a lot of work, on my part of course, watching what I eat and making changes to our lifestyle. They were both in agreement that diet alone is not going to help me gain weight quickly like I need to do. So it’s back to the idea of IV nourishment. The docs seem to be in agreement that I am currently malnourished, so perhaps if I did the IV stuff for a while, my body would start working a bit more properly and my intestines might have the nutrients and energy to start working properly.

I’m not certain if I want to do the IV stuff – risk of infection is high, I will have to do a 3-4 day hospital stay to start it (which I already told the new doc that I am doing at Mt. Auburn or I’m not doing it at all…), then it will mean 12 hours a day, 7 days a week on the IV for at least 2-3 months. Granted this can be done at night, but it will basically mean that I get home from work, hook up to the IV and stay that way all night. Given prior experience with nighttime IVs, I am pretty sure neither Pat nor I would be getting good nights sleep. But I am making a lot of assumptions based on prior experience. We decided that I would go and talk to Dr. Nauta about this again – and see if there is any wiggle room on the timing. Like maybe I can do it every other night instead of every night.

Neither Pat nor I were surprised about the suggested dietary changes. Sugar is not my friend; neither is fat, fresh fruit, dairy, caffeine, chocolate, etc. So I waved good bye to my coke habit (no, not that kind!!), sneaked a few final chocolate bars, and am trying very hard to keep to the suggestions – and fortunately it’s squash season so there are a bunch of foods out there I do enjoy, I just need to learn to eat my acorn squash with a touch of maple syrup as opposed to butter and brown sugar….And Au Bon Pain has its seasonal pumpkin soup so that’s 2 lunches a week taken care of! I’m not good with willpower (I have none) and perhaps a bit too often I feel I “deserve” a treat like a Wendy’s cheeseburger, but I am going to make a serious attempt at this. I am just too tired of running to the bathroom every 15 minutes.

I have already started a food diary and a bathroom log. Guess which is longer??? And I’ll be checking in with the dietician on a weekly basis (I think Pat is going to disconnect the Caller ID so I can’t avoid that weekly call…)For the first week, I was told to make a few minor adjustments (like removing the soda and chips) and see if this has any effect. It’ll all be done in baby steps because we don’t want to remove every tasty thing from my diet if it’s not absolutely necessary.

Oh and irony of ironies…Pat just finished his next column for Fine Books & Collections Magazine. It was on collecting cookbooks. So he’s had lots of great recipes and ideas lately. We just need to find the ones that don’t involve lard, sugar and flavor and I’m all set.

It’s day 4 of no caffeine – I’m still not through the withdrawal stage yet. Hopefully next week I’ll be a little less cranky.

New Experiences Part 2

This week instead of attending a roller derby, I learned how to stack wood. We had to dispose of the firewood that came with the house because it was completely infested with poison ivy, so once that was removed we got a new cord delivered. Once we figured out where we wanted to store it to avoid the poison ivy contamination, we (OK, Pat did the loading into the wheelbarrow, the schlepping to under the deck, and the dumping) spent a few hours stacking it and making sure it doesn’t all come tumbling down. Now we just need some cool fall weather to put the wood stove to the test. I’m looking forward to the scent of wood burning and some cozy cuddling next to the stove.

We got a wonderful surprise over the past few days when the trees at the back end of our property began to turn color. We have an absolutely beautiful view out our back windows (and the front is pretty good too.) No need to go to New Hampshire to see the foliage – all I have to do is look out back. And I finally replaced my camera so I’m able to actually show you what it looks like. Like this and this….Yup, we love living here.

We got lots of work done on the house over the past few weeks. My parents were here for a week and they worked every waking minute. Guest bedroom 2 is no longer pepto bismol pink and the fish room no longer resembles the ocean floor. That room was a major project. All the trim, baseboards and doors were painted blue so that had to be primed and painted. The fish had to be sanded down and special primer had to be put up to cover all the murals. The room is now ready for the topcoat once we decide what color that will be. The windows are sparkling (at least on the inside), my floors are swifted and cleaned, the curtains are ironed and there is no laundry left. It was a busy week for all us – and Pat and I were very grateful to Reg and Ed for all their labor. I think we owe them a vacation where they don’t have to do anything but sit back and relax!!

I have not yet started the IV feeding. There is some question as to whether or not it will help me or if it will exacerbate the diarrhea. Things bottomed out (no pun intended) last week and I ended up going in to the hospital to be rehydrated. Fortunately Pat and I know the signs and symptoms of dehydration and called Dr. Nauta immediately. He immediately got me set up and 4 hours and 4 liters of saline later, I walked out feeling much better. And I learned something. My tiny bladder holds 300mm of fluid, which is how much flows through my IV in 15 minutes. Let’s just say I wore a path in the hall between my room and the bathroom.

Since the tincture of opium and kaopectate are having very little effect on me any more, we need a new plan. Dr. Nauta located a doctor in Boston who specializes in nutrition in patients after intestinal surgery. His specialty is actually gastric bypass surgery, but he also works with short bowel syndrome which is what I have. Both types of patients have a lot of issues with nutrition. Pat and I are meeting with him next week and hope that he will be have some suggestions. I’m really frustrated – this is the worst it’s ever been (except for the salmonella bout of 2003). I’m not comfortable leaving the house, or if I do I won’t eat while I’m out or for a few hours before I leave. I spend too much time looking for bathrooms, I carry my own roll of toilet paper and I know more about diaper rash treatment than most mothers. It’s taking its toll on me – physically and mentally. I know it will get better, I just hope that its sooner rather than later.

New Experiences

I think we could all do with some new experiences in our lives – it’s always great to try new things, go to new places, meet new people, etc. I’m a creature of habit and try to avoid anything “new” except when it comes to travel and it means a new stamp in my passport. Lately though this hasn’t been an option, so I have to find my fun elsewhere. A few weeks ago Pat was traveling for business (he gets to do that these days – though not quite as exotic as my trips) and I found myself at home all alone. This was my first few days and nights in the house by myself. I didn’t get much sleep the first night because I had to keep getting up to make sure all the doors and windows were locked. It got a little better as the week went on, but I am certain now that we will need a dog – someday. Anyway, by Saturday I had had enough “me” time and was ready to see some people so I joined some friends (Mark, Yvonne, and Steph) at the rollerderby. A friend of a friend sort of thing and next thing I know I’m in a Shriner’s Auditorium in Wilmington, MA routing for the Cosmonaughties. It was women’s flat track roller derby and by the end of the evening, I had not only figured out the scoring process but had a favorite jammer - "GO Full Metal Jacque...." ,and yelled cheers that I never in my life imagined I’d be saying. In between periods there was live music and a very enthusiastic crowd. It was a lot of fun - I’m glad I went and I’ll gladly go again!!!

House stuff is fine. I’m hoping to finish painting the last 2 bedrooms over the weekend; I planted some mums to add color to the front walkway, bought a rake to start cleaning up the leaves, and have been picking fresh raspberries for the past 2 weeks. It’s all good and I’m even getting ready to start adding some personal touches, like artwork for the bare walls and maybe even unpacking a few of the knickknacks that I used to have – at least the ones from some of our travels. It’s a little scary to see bare countertops and tabletops everywhere, I need a little clutter. Pat’s been very busy with work and has had a few nights away from home, but I found I could handle just about everything by myself (including making my own dinner). It was a good test and we are both glad things worked out – now he can travel more and not worry too much about me, just as long as its not garbage day – or at least not until we get a can with wheels. Ahh the little things that make us happy.

I want to briefly bring everyone up to date on the health front. I’ve been doing OK for the past few months, though not making the progress I would like and not feeling great. I have many, many bowel issues, which has resulted in my weight loss. I thank everyone for their offers of extra pounds and believe me if I could take it from you, I would. This has contributed to my lack of energy, desire, anxiety about food, inability to do physical therapy, fatigue, etc. It’s a vicious circle and I needed to find a way out of it. I finally gave in and called one of my doctors. Dr. Nauta, my surgeon from Mt. Auburn who has the most knowledge about my gut and has been a source of information and answers for me from the beginning.

He was glad to see me moving around (last he saw me was about 2 weeks into my stay at BI) and we jumped right into my issues. He didn’t pooh-pooh anything I said, knew what my fears were, and immediately made some suggestions. We sat and talked for a good half hour and I walked out of there with a plan and feeling better. I now have Short Bowel Syndrome because I am down to about 5 feet of small intestine (from 20 feet). This is a condition that people with Crohn’s disease suffer from as well as some infants who are born this way. There isn’t a whole lot that can be done, but there are a few things. Immediately I felt better knowing I wasn’t “all alone”.

First and foremost, I need to gain some weight. Since I can’t eat anything without having it fly through me, we are going to bypass a few organs. I am going to try intravenous feeding for a few months to try to gain about 10-15 pounds. Guess I will finally have to go and buy a bathroom scale. Once I have put this on, I should start to feel a little better and stronger. And from there I have a plan as well. I’ll talk more about this when I get to that point. Right now I am happy to have a plan for the next few weeks. I should be able to do the feeding at home and at night without too much interference in my daily routine. We are going to try to avoid any hospitalization and with visiting nurses this should be possible. I still have my port, so access won’t be a problem and since its IV, I don’t have to worry about getting up to go to the bathroom a dozen times a night.

Pat, as always, was the driving force behind pushing me to make this appointment and I am forever grateful. As usual we are attacking this as a team and while I’m the one who has to be hooked up each night, I know that he will be the one stabbing me with the needle and making sure I’m comfortable.

Stay tuned for the food diary and my future complaints about all the foods I can no longer eat!!!

Back to School

At least it seems like that is what I should be doing. I haven’t gone back to any sort of classes in September for more than 10 years but each Labor Day I have the urge to go out and buy new notebooks, pens, paper and all that fun stuff. Or maybe its just the new clothes that I miss…Actually this year Pat and I were both very aware of the first days of school, because of how it would effect our commute. Since we drive to work/train we wondered if we would have to adjust our departure time to avoid school buses, parents, and all those folks returning to work after vacations. Fortunately we seem to be OK, in between the start of high school and grammar school and not too many buses along the way. That’s good because the thought of getting up any earlier is not pleasant to me.

For some reason I’m finding it more difficult to find time to write my blog entries these days. The nights that I get home from work, the last thing I want to do is go near the computer and the days I’m off, well it’s a similar feeling. I find lots of other ways to occupy my time – there is always a project to be done at home or some errand that needs to be run. It’s all good, though the front garden is still in sad shape and will probably remain that way for the next year. Fine with me as I got poison ivy for the 3rd time this summer, and this time I had on long pants and long sleeves and gloves – somehow I managed to kneel in it and get it on my knees. I really am going to get a hazmat suit for next season!!

Pat is busy as ever at work and is starting to travel a bit – so I’ll also be spending my first couple of nights alone here in the house. Fortunately I’m very comfortable and shouldn’t freak myself out too much. No horror movies for me though, just sappy romantic comedies.

And time for the medical update. I hade my quarterly CT scan a few weeks ago followed by my quarterly check in with Dr. Lange. All is well – scan was clean, tumor markers are all in range and he thinks I look great. OK, well what he actually said is I look incredibly healthy, except that I am the thinnest he has ever seen. My face is still full, but the rest of me is skinny. Pat was glad he noticed because he actually thought it would make a difference to me to hear it from a doctor. I realize I am having some difficulties putting on weight but its not for lack of trying. I don’t exactly follow the Atkins diet or anything. I just can’t keep any food in me long enough to get anything out of it. The lack of nutrients is also effecting my energy and stamina levels so I know we need to do something, but I’m just tired of all this. It’s not that I don’t want to be healthy, but I’m tired of having to do all the work. I’ve lost my appetite for most food because it just doesn’t stay with me long enough for me to enjoy it.

It’s all stuff we’ve heard before – eat carbs, eat sugar, wait cancer cells feed on sugar and carbs, remove white flour from your diet, eat lots of fresh fruit, don’t eat fresh fruit, only canned. It’s too much. I don’t feel like sorting through all these diets and seeing who has the best evidence to back up their claims. I’m going to eat what I like, when I like it. I just want it to stay in me. We are making an appointment with a gastro since 2 rounds of antibiotics didn’t take care of this latest problem and we all know that I suffer from short bowel syndrome – but we don’t know is if there is actually anything that can be done to help me or if I have to spend the rest of my life taking narcotics and opium and carrying around a roll of charmin toilet paper and butt paste. Let me tell you I got some interesting looks for the TSA during my last bag screening – especially since they had to hand check my bag because of the liquid I was carrying.

Enough complaining and back to work. I’ll keep you posted on my progress with gaining weight…yea, yea, I know don’t we all wish we had this problem. Smile….

Snakes on a lawn!

Oh the joys of living in the country! In our yard alone, I’ve seen a bunny, a skunk, ducklings, my neighbors horses and donkey and oh yea, I found my first snake today. Fortunately it was dead, not sure if I have the lawn mower or the neighborhood cat to thank. Even the word snake makes me uncomfortable. And no I won’t be going to see any movies that involve snakes or planes, especially if I ever want to fly again.

As things settle down, we are realizing that this is our home and we are enjoying making it ours. The first few weeks were like a whirlwind trying to get stuff done, getting ready for the PMC, finding a new routine, etc. Now we’ve got the weeds somewhat under control, poison ivy has been identified and mostly removed, the living room and dining rooms have been painted, and all the boxes from the 1st and 2nd floor were emptied and the remains recycled. We would not have made it this far if not for some really great friends and family who pitched in and helped us out. Thanks to everyone who cracked the whip, wielded the paintbrush, folded reams upon reams of paper, and showed me how to use loping shears.

Curtains and window treatments were this week’s issue. In 8 years of apartment life, we never could agree on window treatments, we are hoping we can find something a little quicker this time. One aspect of the house that we immediately fell in love with was the oversized windows that let in so much sunlight and gave the house its bright cheery feel. The downside of this we are quickly realizing is that they let in a LOT of sun, which means furniture will fade and forget sleeping past 6:30, at least until we agree on some curtains.

I could go on for pages about home decorating because it’s all so new and exciting. We’ve wanted this for so long and now we have it – and we are going to have some fun with it! However, reality is always lingering in the background and I’ve been dealing with some minor health issues. The leg is still not back, but it’s definitely making progress and I’m able to get up and down the stairs as I need to. More physical therapy is needed which means I have to find a new place to go, maybe in Holliston, maybe in Boston. That’s on my to do list for this week. I also determined that I can’t go near poison ivy. I’ve got it for the 3rd time since moving into the house, yet haven’t learned my lesson. I’m looking into buying a Hazmat suit to wear whenever I want to garden. The problem is that it is everywhere – which is apparently common out here. I’m working on killing it and making the yard safe for me to go in, but I think I’ll be dealing with a few more bouts of it before that happens.

I tried to take a few weeks off from doctors, hospitals, but didn’t really succeed. My diarrhea was worse than usual in July and while I knew the stress and heat were probably contributing to it, I still didn’t feel right. Called my doctor who ordered some tests, and lo and behold, discovered I had c dif (clostridium difficile) which is basically a bacterial infection in the intestines that you get from hospitals or antibiotics. The treatment – antibiotics of course! It’s not uncommon in situations like mine, it’s treatable, and it certainly explains a lot. I did a 2 week course of antibiotics in July but they didn’t seem to work, so I’m on another 2 week course of a stronger antibiotic right now. I’m hoping that this will work and perhaps I will begin to gain some weight. This is an issue I’m struggling with as I don’t want to actual “take” or “do” anything to help it, but as I dip below 100 pounds for the first time since I was in junior high I realize perhaps it is a problem. I’ve got lots of suggestions, supplements, etc sitting around the house, so it’s just a matter of me using some of them. And I will, when I’m ready. My excuse this week is that the antibiotic I am on leaves a foul taste in my mouth (just like I had with the Erbitux and chemo before that). So it’ll be a struggle just to stay hydrated over the next 2 weeks, but I’ll do it because I really don’t feel like going into the hospital this month.

And finally – I have my quarterly CT scan and blood work on Wednesday. I see Dr. Lange next week to discuss the results. Since this is my first follow up scan since the surgery (not including the baseline scan from May), I’m not concerned. We don’t really have much to discuss – I’m very happy not to be on any medications, there is nothing new in the pipeline, and for the most part I feel good. He will have some comments about the weight loss and make some suggestions, but it should be a stress free appointment. The CT scan is a different story – I can’t honestly say I’m looking forward to the tasty barium but its one day every 4 months so I think I can get through it.

I realized this week that I am finally starting to feel like myself again – it’s been almost 2 years since I felt “good” and I think I’m going to like it when it all comes back. Especially since I now can sit on my deck, watch the birds and horses, take in the view of all the green surroundings and enjoy life again. Oh and maybe make some time every week to update this blog.

With Gratitude

It’s been a month since I posted and I have lots and lots of stuff to share, but today I am only going to talk about one topic – my amazing husband, his incredible friends, and the overwhelming gratitude I feel towards everyone who participated in the Pan Mass Challenge these past 3 days. I can’t begin to describe the gamut of emotions I have felt throughout this whole journey – joy, happiness, amazement, jealousy, gratefulness. I get exhausted just thinking about driving 192 miles and can’t imagine riding a bike this distance, but over 4000 people took off from Sturbridge early on Saturday morning and rolled into Provincetown less than 36 hours later. It must have been something to see – and I am sorry that I was not there to thank those riders in person. Next year for certain!!

The past month has been a whirlwind of activity for Pat and I. We put together the benefit, packed up the Somerville apartment, moved to Holliston, tackled some house projects that needed immediate attention, Pat worked full time, did some traveling for work and squeezed in some training for the Pan Mass. He has not had a moment for himself in at least a month and probably longer. It’s been a long and busy few weeks – I can’t tell you the last time I saw Pat relax – he hasn’t had a chance to see any of the movies I know he wanted to see, I haven’t seen a book other than a computer manual in his hand in weeks, and he hasn’t even been able to catch 5 minutes of the Daily Show or Colbert Report (nor have we found the time to hook up the TiVo, so I can’t even say we have a backlog of them for him to watch).

The past few weeks, Pat’s training for the Pan Mass has taken a back seat to everything else in our lives. I know he wanted to spend a lot more time on the bike or at least at the gym before this weekend. Had this been a typical July that would have been possible. In Somerville, the gym was 5 minutes from our house. And since I had just started back to work part time, Pat would have had a lot more flexibility in his free time. However with the new house and move to the suburbs, we lost a lot of this extra time. Commutes are now longer, getting the oil burner fixed and having hot water takes precedent over a bike ride, and the weather hasn’t exactly been cooperative. Too much rain and heat and not being “hard core” Pat didn’t ride too much in the rain. Typically he would have made that up at the gym, running a dozen miles or biking for hour, but we cancelled our membership in July and have yet to locate a new gym that will be convenient for both of us. We both knew all of this would have an impact on Pat’s stamina, but there wasn’t a whole lot we could to change things. We chalked it up to bad timing, but don’t regret any of the decisions we’ve made this summer.

I talked to Pat on Saturday just before noon when he reached the lunch stop. I immediately knew he was frustrated. He was disappointed in his performance thus far and was not looking forward to the rest of the ride. He told Mark, Alex and Tom to go on ahead without him. A few hours later I got the call I was waiting for – he had made it to Bourne and the first 111 miles were behind him. I think all he wanted to do was get a shower and collapse. And I know that’s what he did. I had tears in my eyes when I talked to him and heard how exhausted he was – I was so proud of him and wanted to be there and tell him that in person, but had to settle for a phone call of as much encouragement as I could give him and lots of “I love you’s”.

He called shortly after 11AM on Sunday morning from Provincetown. He was wiped out, but at the finish line. All 4 guys made it to then end in an amazingly short amount of time. I felt incredibly proud of my husband, the rest of Team Appendiceal Wheels and everyone else who completed the journey. I am in awe of their stamina and determination. I never doubted for a minute that Pat would make it the whole way – even though I know he himself has some serious doubts. He can and usually does, do anything he puts his mind and body to. I told him that he was my hero, that he is has always been my rock. I love him with all my heart and can’t wait until he gets home tonight so I can feed him, rehydrate him, rub his feet, his back and whatever else is aching on him and just hold him close.

I cannot find enough ways to thank everyone who helped us with this. To those who donated, attended the benefit, bought tshirts, pictures and other stuff “Thank you!” - Pat not only reached his goal of $3300 he surpassed it by over $1000. To Mark Stephan, Tom Esch, and Alex Calhoun the other riders on Team Appendiceal Wheels – “YOU GUYS ROCK!!!” You are amazing, caring, generous and incredible people – thank you for being who you are. Mark, you were the ringleader in this endeavor and without you Team Appendiceal Wheels, AKA “Our Team Jean Kicked Your Team Jean’s Butt” would not exist. Tom, despite how busy you were, you remained dedicated and focused – thank you. And Alex, sincere thanks for motivating our men and helping them obtain their goal. I could not ask for better friends. To everyone else who played a role – it hasn’t gone unnoticed, the support and assistance you provided was vital. I will be forever grateful for this opportunity to raise awareness about appendix cancer and pseudomyxoma peritonei.

Lastly, I want to say a public THANK YOU to Pat. He is an amazing man, a wonderful husband, a conscientious care giver and all around great guy. I would not be the person that I am today if not for him and I know he feels the same about me. He has held my hand through all our trials and tribulations and tonight I want to hold his hand and thank him for always thinking of me first and putting his own needs and desires on the back burner. (And give him complete control of the remote….) He is incredible and I am proud to be his wife, his partner and the love of his life. WAY TO GO HONEY!!!!

And to end things on a statistical note…The money raised by the Pan Mass Challenge will go to the Jimmy Fund at Dana Farber Cancer Institute where 99 cents of every dollar goes to cancer research. Though they don’t currently have a specialist to treat Appendiceal Cancer or PMP, Pat and I hope to sit down and talk with them and make them aware of how important the right treatment is for this type of cancer. The wrong treatment will cause more harm than good and we know how important it is for this disease to be properly diagnosed and treated.

Happy 4th!!

Where does the time go?? Silly question – it’s gone to packing, painting, cleaning, shopping, mowing, schlepping, weeding, framing and a little bit of socializing. Whew…It was a busy weekend for us. We didn’t get everything on my “To Do” list completed, but we did get our new bedroom painted a much more soothing color, Pat got to use the lawn mower, I discovered the joys of weeding, and finally on Tuesday we broke in the new grill with some burgers and dogs and had our first non family house guests. The official move isn’t for a few more weeks, but we managed to pull off a quiet bbq and spend some time soaking in the “country air”. Yup, I was exhausted by the end of it. I keep forgetting that I’m still not running on full power yet and my leg lets me know when it’s had enough, so we may not get to paint all the rooms before moving day, but there’s plenty of time for that down the road.

The next few weeks are going to be crazy busy for me so the blog entries may be more like every two weeks instead of once a week. We’ve got a lot of stuff here in Somerville that needs to be packed up and ready to go for the movers, I’ve got photos to finish for the benefit and now there is that other pesky commitment – work. I am looking forward to returning to the office and between Pat and I’ll we’ll juggle everything and meet all our deadlines, but I don’t think either of us will be sleeping much over the next month. Unless of course Pat gets to go away on business in which case he’ll sleep and I’ll be the cranky one at home throwing stuff in boxes. I guess it’s about time I pulled my weight around here.

We decided we needed to concentrate on the good stuff in our life for once, so I’ve moved all my doctors’ appointments into late August, except for physical therapy. There’s no urgency for any of my appointments and the few extra weeks between CT scans won’t make a difference. One less thing for me to stress over will definitely make my life a little easier.

Pat hasn’t logged much time on the bike recently, but hopefully he’ll bring it out to “the country” next weekend and do some exploring around our new neighborhood. August 5 & 6th will be here soon and 200 miles is a lot of ground to cover. Hopefully the weather will cooperate and it won’t be a soggy weekend.

Hope to see some of you at Tommy Doyle’s next week!

Very Brief, but VERY GOOD

I just wanted to take a moment to let everyone know that as of 2pm on Friday, Pat and I are officially HOMEOWNERS!!! WooHoo!!! The closing went smoothly and we are now in possession of the keys to our new abode in Holliston, Massachusetts. We are very, very excited and will be spending time over the next few weeks getting the place ready to move into. We will be leaving Somerville officially sometime during the 3rd week of July. We are very fortunate to have a great rental situation right now which allows us to take our time moving. We told our landlords we’d ask around to see if anyone we know is interested in taking our place, so if you or someone you know is looking for an apartment in Somerville, close to the Orange line, let us know.

I have a pile of paint samples that Pat and I will be debating over as we begin to make some changes to the new home. Right now there are 4 rooms painted blue, and I only like one of them, so we have to change the other 3. The living room is pink as is one of the bedrooms and since this is my least favorite wall color (after living with it for the past 8 years in our hallway!!!) these 2 rooms must be changed as well. And then there is the lavender dining room. Nope, not going to work for us. So as you can see we’ve got our work cut out for us. As neither Pat nor I have much experience with paint, this could be an interesting couple of weeks. I’ll keep you posted!

Lastly, I just wanted to let everyone know that despite the change to the front page of our website, I will still be posting weekly updates. As you may have noticed we, along with the other members of Team Appendiceal Wheels, are hosting a benefit to raise funds for the Pan Mass Challenge. Pat, Mark and Tom are riding this 2 day, 200 mile event in the beginning of August. All monies raised will go to Dana Farber Cancer Institute. The benefit will include a silent auction of my photographs from some of my travels. In addition, we have t-shirts, bicycle jerseys, greeting cards, and matted photos for sale. If you find yourself in Cambridge or the Boston area on the night of July 13, please stop by Tommy Doyle’s in Harvard Square to support this cause. If you can’t make it but would like to see some of my photos or buy a t-shirt, let me know.

Gotta run – some packing to do and today will be our first trip out to the house as the new owners!!!!

South of the Border…

Well, not quite but close enough. I just got back from a nice change of scenery in Arizona. I left Boston and its 50 degree weather for the sunny 107 degree days in Arizona. Dry heat or not, 107 degrees is HOT!! I lasted about 10 minutes outside before I began to drip. Fortunately everything is air conditioned so I really didn’t suffer all that much. And plus it was sunny every day, and it’s hard not to enjoy that! Got to spend lots of time in the water too. Every day, twice a day I went into the pool to do my exercises – and because I felt so good, I doubled my usual rep, but didn’t overdo it, though I definitely felt it somewhat in the muscles. My left leg also felt better as I wasn’t depending on it as much, so all in all it was a good trip for me. Oh yea, I also got to spend time with Mom and Dad which is always a treat and they were happy to see me looking so much better than I did in April when they were here.

For those of you who remember my last trip to Arizona included a lovely stop at a border patrol station where I excited a drug sniffing dog with my narcotic stash in my pocket. This time I made sure I had my opium in a bottle with a prescription label, but forgot about the narcotics in the pill box in my purse. Fortunately border patrol was too busy following George W’s orders on the Mexican border to have anyone at the station so we got by without any problems. Whew…Not sure how I would have talked my way out of it this time, though my brace and crutches probably would have helped a little. I think my parents were ready to strangle me when I mentioned the pills sans prescription in my purse. I was ready to just take them all (there were only 4….) and sleep through the whole escapade. And now because I’m posting this on a public site, I’m guessing I’m probably on some government watch list.

I do have some good news to report. My days of water exercises seemed to have had an effect on my quad muscle. I had physical therapy on Monday and the PT asked me to lift my leg off the mat, knowing full well that I couldn’t do this when he had last seen me. Neither of us had any reason to suspect this time would be any different, but I humored him and tried it. Whoa!! We were both shocked when I managed to get my leg a few inches off the mat. I figured it was a fluke, but I tried a few more times and each time it was shaky, but I was definitely lifting it. I also could do a few other movements that I couldn’t do before. The quad muscle is still barely working, but this was a huge step. I had been at the same level for at least 4 weeks and was beginning to get discouraged, but this got me going again. We were all surprised and aren’t sure if it was the water exercises or what, but I definitely have made some progress. Now I just need to find a local pool to continue my progress – perhaps I’ll talk Pat into putting one into our new backyard.

Gotta run, we close on the house on Friday and haven’t even begun to pack yet, though we probably won’t move for a few weeks. Some painting and other stuff to do first.

Busy, busy week

I don’t know where the week has gone – somehow it got to be Thursday though I feel like it should only be Tuesday. The news is all good though. Pat got called away on business Sunday afternoon, so I was on my own from Monday through Wednesday evening. I survived just fine and actually enjoyed a few hours of peace and quiet. Most of the time I was either sitting in front of the fax machine or the computer getting stuff together for the mortgage and sale agreement we still needed to sign. Thank goodness for technology advances as Pat was able to sign from Baltimore, fax it back to me, I signed here in Somerville and faxed it off to the lawyers, realtors, and mortgage brokers. At last count I faxed 75 plus pages, and because the machine we have is old, most of this was done with me sitting on the floor feeding in a page at a time. The good news is that I discovered I can now get up from the floor should I find myself down there for any reason.

Anyway, that is all behind us now. It’s all going according to plan and we should be official home owners later this month. We really are quite excited about this, I’ve already been to Home Depot a few times to collect paint samples and figure out what colors we want to use. It’s a completely overwhelming process, but one we are very much looking forward to. And yes, that is a LOT of lawn that will need to be mowed. No more postage stamp sized yards for us! We’re going to try a standard mower for the first year and see just how much work it is. Many of you have already suggested we get a lawn service, but what’s the fun in that??? Maybe in a year or two when the novelty of our own grass wears off….

On top of all the house stuff, I had a bunch of appointments this week. I started regular physical therapy and after an initial bad impression, like my new physical therapist much better. He pushes me and doesn’t look at my history and feel sorry for me. He knows his job and should be good at getting me moving. On this front, I also had my EMG test on Tuesday. To anyone who says this test does not hurt - YOU ARE A LIER!!! I have a high pain threshold and I was ready to scream after the first five minutes. Those electrical pulses are annoying and painful, especially when they are concentrated in the same area for ten minutes or more. The whole test, including the needles they insert into your muscles, took about 2 hours. I was really glad my mother in law had come up from Rhode Island to accompany me, because I don’t think I could have made it home in a cab by myself. My poor right leg was completely exhausted and drained of any energy it might have. Electrodes, needles, and what felt like lighting bolts shooting through my body – yikes! But that’s enough complaining and I’ll move onto the preliminary results. The neurologist said it was definitely femoral nerve compression (as opposed to a severed nerve) which is what we have been thinking all along. A few of the test results were inconclusive, but he may have more information to pass along later. He also stated that he did not think I would ever regain 100% use of the leg. This news surprised me because no one else had said this to me. He did say that I would get enough use to be able to walk without a brace or crutch, but agreed with the general opinion that this is probably 9-10 months down the road.

I’ll be continuing with my physical therapy and my at home exercises and working on getting more strength in the leg. It is surprisingly strong which the doctors agree is a good thing, but the quadriceps muscle is still totally atrophied and the nerves have a ways to go. The measurement we took was 410 millimeter which comes out to 410 days to regenerate the nerve, however the neurologist said my initial burst of nerve regeneration was probably about 40-50 days worth of work and add to that the 60 days I’ve been working on it that leaves about 310 days of growth. Just where all the doctors tell me I should be.

I also had an appointment with Dr. Hanto this week for my last post surgery check up. The abdomen has healed very nicely and he was pleased to hear my catheter was out. He commented that I looked much better and stronger since my last visit and I agreed that the past month has been good. He gave me permission to return to work (3 days a week, which I will begin in July) and then I decided he needed a little guilt trip from me. I let him know what the EMG had shown and reminding him that 50 % of my job involved traveling, something I might now be able to do for quite some time. It had the desired effect – he is aware of my disappointment in the outcome of this surgery and the effect it is having on my quality of life. I don’t have to see him again, though he said he would like to be kept appraised of the progress with my leg.

I’m off to Arizona this week to spend some time baking in the sun. I hope to try out the pool and see how my leg works in water and also spend some time relaxing with my parents. I was up and moving when they last saw me, but it’ll be good for them to see me speeding around on my crutch and brace. Pat will have to hold down the fort in Somerville and perhaps spend his share of time in front of the fax machine. He’ll be updating his half of the site soon with more detailed information about the Pan Mass Challenge and our plans for a fundraiser and t-shirts for Team Appendiceal Wheels. Check back later next week for more info!