As Promised

I spoke with Dr. Zeitman this morning and got the news that I didn’t want to hear, but unfortunately was expecting. I’m not a candidate for Proton Beam Therapy. He spent hours examining every angle of my CT scans and MRI, talking with other docs at MGH and trying to find a way to make it work. But in the end, the risks are too great – he is afraid that any radiation will greatly impact my quality of life and also jeopardize future surgeries. Even targeted beams like these are going to damage anything they come into contact with and there is a loop of bowel too close to the tumor. We agreed from the get go that we would only go ahead with this if he (Dr. Zeitman) could guarantee that he wouldn’t cause me additional problems. We both knew it was a long shot and my last option. I am glad I got to work with him and very much appreciated his honesty and candidness. Pat and I talked last night and I said to him, it’s been almost 5 days since the CT scan at MGH and I haven’t heard from Dr. Zeitman. We both knew this most likely meant that he was trying desperately to make Proton Beam an option for me, but not having any success. So even though I had already crossed it off in my mind, it still hit me pretty hard when I spoke with Dr. Zeitman this morning. No matter how much you think you may be ready for bad news, no matter how prepared you feel, hearing those words can still knock the wind right out of you.

Surgery is now my only option. So much for months of weighing decisions. I still hope to be able to put it off for a bit - the pain medicine is working well and my bladder is still functioning fine. I’ll continue to monitor myself, set up a CT scan and follow up appointment for June and take it from there.

Falling behing

I am getting as bad as Pat with updating the site lately. I’ve been busy – with work, personal life and health stuff. It’s never ending and I always say “Oh, I’ll write an update after I hear from Dr. X or after I get the results of a scan/test.” I also feel that I should occasionally post with some non-medical stuff because believe it or not I do have life outside the hospital Lately I’ve begun to forget this – I was at the hospital for either a doctor appt or test at least once a week for 10 weeks straight. Considering Mt. Auburn is now at least a 1 hour drive from my house and each appointment is usually 45 minutes, that’s 3 hours an appointment minimum!!! They should pay me a salary for all the time I spend there!! I digress...

Pat and I did continue our annual tradition of attending a Pogues concert in March, and this year I didn’t have surgery the next day and wasn’t on crutches. Though I still love them and can’t believe Shane McGowan is still alive (and as drunk as ever), after the concert I did say to Pat “I think we’re too old for this”. I was annoyed by the people in front of us who were constantly shuffling in and out (because no one sits so you are on your feet anyway), making a beer run every 5 minutes (jealous is more likely the cause of my annoyance since I can’t drink and just watching someone consume that much fluid made me have to go….) and as usual the acoustics in the Orpheum were up to their usual lack of standards. But it was the Pogues and I left their hoarse from singing along for 2 plus hours. Even the hour drive back home didn’t bother me, too much. A little bit of normalcy goes a long way these days.

We also just returned from a weeklong visit to my parents in Arizona. Seven days of sunshine and 80 degree temps – I certainly can’t complain. Pat on the other hand had 7 days of slathering on SPF 70, but he came home as white as he left – good job!! Me on the other hand, well my mom said to me about day 5, you look pale, go sit by the pool. So I did. We covered lots of ground, saw the last spring training baseball game for the Diamondbacks, went hiking in Sabino Canyon and Saguaro National Park, toured Tucson, and even ventured down to Tubac which meant having to pass through a border patrol stop on the way home. I had all my pill in properly labeled bottles this time, but I was pretty convinced that if a dog took one whiff of me, that we’d be pulled over (especially now that I wear a pain patch, I can only imagine what scent is thrown out of my pores). But no dogs on duty that afternoon and we sailed right through. I decided to avoid that direction for the remainder of the visit. All in all it was a nice visit. The flight out was a bit problematic, a late afternoon flight and that is usually my worst time of day so by the time we landed I was dehydrated and starving (since I avoid eating and drinking to minimize bathroom trips) so I ate when I landed which meant I suffered overnight. It took me about 36 hours to acclimate and then I did great for the remainder of the trip. Going home we had an early morning flight and I had almost no problems. We were using this trip as a test to see if I could handle longer flights in case we want to take a vacation to say Europe or Australia later this year. It’s really hard to say whether or not I could handle those flights. Perhaps in first class, but since that’s not going to happen on my budget, we’ll have to think long and hard before planning a trip. Gone are the days of deciding on Monday that we want to go to Iceland for the weekend and hoping on a plane on Friday afternoon. Too many things to consider and we both know this list is just going to get longer once I have my next surgery. This brings us to the medical portion of this post…

I had my quarterly CT scan a few weeks ago and follow up appointment with Dr. Caughey. I had a lot of problems with the scan this time. I always react poorly to the barium, but for some reason this time it made me nauseous as well as increasing my diarrhea. By the time I got to the hospital to do my blood tests I was in bad shape and the nurses took pity on me. I know that part of it was psychological – I figure I’ve had at least 50 CT scans in the past 8 years and that is a lot of barium. And even though I dilute the stuff in cranberry juice it still tastes awful. Technically I’ve been told I can skip the night before prep since it goes through me so quickly in the AM, but I thought I could handle it. I won’t make that mistake again, next scan AM prep only. Anyway the nurses on Wyman 3 were angels and calmed me down, took my blood and helped me square away some other issues I was having – like changing to a pain med that actually worked and arranging an MRI (more on this later). The scan itself was uneventful. The next week I met with Dr. Caughey and discussed the results. The blood work showed my tumor markers steadily climbing – they aren’t into ridiculous levels but they are all above the normal range and not coming down. The scan did not show any new growths and the tumor on my bladder grew marginally – enough to be noticeable on the scan (so at least 1mm, but not enough to cause concern). I could tell it had grown since I am now feeling pretty chronic pain in the pelvic region from it and I do feel as though I am urinating a bit more frequently. We discussed my options with Dr. Caughey – basically all that I have left were to meet with the Proton Beam Center at MGH, to schedule surgery at Mt. Auburn, or to do nothing.

We decided that it would not hurt to at least talk with the doctors at MGH regarding Proton Beam therapy, so Dr. Caughey got me a referral, Annabelle as usual went above and beyond the call of duty to help put together my medical records, and about a week later I had an appointment to see Dr. Anthony Zeitman at Mass General. This was my first time seeing any doctors at MGH, and made me realize how fortunate I am to have at least half dozen major hospitals all within an hour of where I live. Oh and to have health insurance that allows me to check out all of my options. Pat and I make it a point to both attend as many appointments as possible, especially initial meetings like this. We sat down in the office and a few minutes later a burst of energy entered the room and got right to business. Dr. Zeitman had reviewed most of what I sent as most doctors are, was very interested in my case. As usual he was impressed with how good I looked despite everything he had read about my situation. We liked him immediately – he asked the right questions, listened as I gave him my history in a nutshell, ticked off all the different treatments I’ve had, cringed appropriately at my mention of radiation, and eventually brought in a urological surgeon to consult with. He told me that he would not recommend Proton Beam Therapy if he felt it was going to compromise my bowel in any way.
Dr. Zeitman understood that quality of life was the most important thing and he was glad to hear that I was not looking for a “miracle cure” - just a few more months with a bladder. Basically we are hoping Proton Beam Therapy will stabilize the tumor and keep it from growing any larger and thus leave me with a functioning bladder for a while. This type of radiation can be so focused that it will hit only the tumor and have very little to no scatter, thus not damage the surrounding tissue. If it goes through the tumor and hits the bladder that could be the end of my bladder and if it hits anything around it (small intestine for example) it will cause more damage and more problems (diarrhea, etc.)

Dr. Zeitman felt that my latest CT scan did not show him enough detail about what was surrounding my bladder and the tumor. There is a mass next to the tumor and he could not tell if it was adhesions, bowel or what. So he asked if would mind doing an MRI. I said as long as I don’t have to drink any more barium I would be up for it. So we left the appointment with the plan that I would do an MRI at Mt. Auburn, send it to him and then he would call me with the results.

It took a week, but I finally got an MRI scheduled at Mt. Auburn for a Sunday afternoon. The only other MRI I ever had was a day after my surgery at Beth Israel when they were trying to figure out what was going on with my leg so I have very little recollection of the procedure. It’s a VERY LOUD test, the headphones they give you do nothing to decrease the volume of the machine, and it’s very claustrophobic. I did OK, but I really wouldn’t want to be doing these on a regular basis. I know they now have open –ended MRI machines but I guess Mt. Auburn does not yet have this technology. Anyway I left there with a copy of the test and sent it off to Dr. Zeitman immediately. I knew he was away for a few days and did not expect to hear back from him until the last week of March.

On the first Monday of the last week of March as I lay sleeping in my parents spare bedroom in Arizona, I heard my cell phone ring at 7AM. I let it go. Then I remembered who it might be so I ran to pick it up, but missed him. Surprise, surprise he left a message – with his cell phone number to call him back!! What kind of doctor does that??? I tried to go back to sleep but of course that wasn’t happening so I called him back, expecting to play phone tag. Another surprise – he answered!! And could talk at that time!! I like this guy more and more….Anyway what he told me was that from the MRI he still could not tell what the mass was next to the tumor. It appeared to him that there was some small intestine sitting either on the tumor or on the bladder, possibly attached. And if this is the case he can’t do Proton Beam, it would cause too much damage. He sounded disappointed, but not quite ready to give up hope. He told me there was a slight chance he could still help me, but it required another test.

If this loop of bowel is just lying there and not attached to the bladder it would move when the bladder was filled (as it was empty during the MRI). Dr. Zeitman arranged for me to have a CT scan of my bladder done with a catheter inserted into and filling the bladder at the same time. This way they could see if the loop of bowel moved off or out of the way when the bladder was filled. If it moved, then I can have Proton Beam therapy because chances of hitting the same piece of bowel treatment after treatment is low and thus not much damage would be done to the bowel. If it didn’t move then Proton Beam therapy is ruled out because they will hit the same area of bowel treatment after treatment and that is something that will cause me too many additional problems.

This test was arranged while I was still in Arizona and I don’t think the docs ever caught on to the fact that they were calling me at 5AM my time and waking me up every day to make these arrangements!! So I arrived home on Wednesday evening and the test (with no prep!!) was scheduled for 10AM on Thursday.

I went straight to MGH from the train, made quick friends with the nurses, made certain they understood that when I said I had a tiny bladder that I wasn’t kidding. Made certain the techs understood that as well as the radiation team that Dr. Zeitman sent down to oversee the process. They had a bag of about 24ounces of fluid they planned to fill my bladder with over the course of the test. I said, no way!! I can’t take a drink without feeling it in my bladder. They agreed to cut off the flow as soon as I felt full. I think they got about 6 ounces into me before I signaled enough. Could I have taken a bit more? Probably, I just was afraid of them pushing it too far and causing the bladder to burst (it’s happened to me before) or them not believing me when I said enough. But they listened and turned it off, did the scan and I was done by 10:30AM. (Have I mentioned how much I hate catheters?) I was grateful to have mine removed and went back to the office. Everyone at MGH was great – it’s not such a scary place after all.

And now it is Sunday evening. I’ve been in bed since Friday with a head cold and surprisingly have not heard back from Dr. Zeitman yet. My theory is that they did not get a clear enough picture on the CT scan with catheter and he is trying to re-read every scan and MRI I have sent him the past month to determine if he can safely do Proton Beam Therapy on me. I know he does not want to say no to me as he realizes this is my only hope. But I also trust that he will not do it just to do it and cause me more problems down the road. I assume I’ll have my answer by early this week and I’ll update then.

Apologies for the length of this post – and I promise to write less and more often.

Thanks! XOXOX
Jean

Decision Time

I’ve spent the past several weeks trying to wrap my brain around all of the information we had received from the many doctors and specialists I had met with these past 2 months. I wanted to wait until I had every bit of data possible before making any decision. Unfortunately there is no clear cut, “Pick me! Pick me!”option. The negatives far outweigh the positives. I’m not just saying this from my pessimistic little corner of the world, my options really are rotten:

1. Have surgery now with my local team at Mt. Auburn to remove the current tumor and lose the bladder. Since there are no artificial bladders available, end up with some type of bladder bag. The three that have been explained to me are: a) similar to a colostomy, involving a stoma to the lining of the abdomen and a detachable bag adhered to my skin; b) re-routing the ureter to the colon (I’ll leave it to your imagination to figure out where the pee goes with this one…); Or c) a permanent catheter and leg bag.

2. Some type of radiation therapy (either cyber knife or proton beam radiation) which MAY be able to hit the tumor and slow its growth and buy more a few more months with my bladder. However, side effects of the radiation include such wonderful experiences (which may or may not be temporary) as yeast or bladder infections, bladder incontinence, and cystitis (constant feeling that you have to “go…”). And after all of this, the tumor will still eventually have to be removed and along with it, my bladder.

3. Something that has been nicknamed the MOAS (Mother of All Surgeries) which includes a complete cytroreduction (removal of all visible tumor and in my case the mounds of scar tissue and adhesions that now fill my belly, probably 12-14 hours of surgery) and heated intraperitoneal chemotherapy poured into the abdomen after all adhesions are removed. This is what I was supposed to have done in DC 5 years ago, but for reasons never acceptably explained to us, the chemo portion was not performed. The chemo wash is supposed to kill any remaining tumor cells and if successful I MAY get 3-4 years before my next recurrence, instead of my usual 18 months – there are no guarantees however and I know many people who have had recurrences less than a year after this type of surgery. The results of this surgery and the side effects of the chemo include loss of my bladder and most likely loss of my colon (which means a permanent ostomy – either colostomy or ileostomy), a hospital stay of at least 6 weeks, possible permanent nerve damage to my right leg because of the location of the tumor and no guarantees that I will walk out of the hospital. Not to mention the usual risks when under anesthesia for any length of time; exposure to the usual germs, viruses, infections in any hospital; and of course my usual problems with post-surgery diarrhea after they remove yet another piece of my intestines.

4. Wait and See. Wait a while, watch the tumors progress via CT scans, and hope it doesn’t grow too quickly, grasp the nerves that it seems to be sitting near and cause permanent nerve damage to my right leg. Eventually it will begin to strangle the bladder, cause urinary type symptoms and will need to be removed, along with the bladder (see #1 for options after the bladder is removed).

So, as you can see I have had a lot on my mind. Option 3 is being offered to me by Dr. Goodman, the specialist I saw in January. All other doctors have told me I am no longer a candidate for this type of surgery because of my adhesions and prior surgeries. He thinks that my age makes me a candidate for this lengthy and complicated surgery. Though he has seen my records and heard my history, I don’t think he really comprehends all that I have been through these past 8 years, and he did mutter the phrase that I have come to hate “Many people live perfectly normal and active lives with an ostomy”. I KNOW THIS – but how many of them also deal with all the other issues that I have after everything I have been through these past 8 years? And if you give me an ostomy can you guarantee the cancer will go away and never come back? And will is just be 1 ostomy – will I get to keep either my bladder or my colon and thus only need 1 bag and not 2??? If he could honestly answer yes to at least these 2 questions I might jump at this option. But he can’t, so I won’t.

After weighing the pros(??) and cons of these four options, hours of discussion, several appointments with several therapists and social workers, Pat and I reached a decision that we are both comfortable with. It was important to me that we be on the same page. It was with much trepidation that I asked Pat his thoughts about what Dr. Goodman was offering me. I was relieved when he did not hesitate to tell me that he thought the risks of the MOAS far outweighed the possible results in my case. Four years or 3 surgeries ago we both would have jumped at this opportunity, but the memories of my last surgery are still fresh in our minds (it’ll be 2 years in 2 weeks). We know that this surgery would be much more complicated and given my history of complications, well, enough said.

The envelope please…My decision is to wait and see. It’s the only viable option for me at this time. I am in no shape, physically or mentally to undergo a major operation at this time and I don’t know when I will be. I don’t have much pain and almost no symptoms, so I’m stick with the old adage “If it ain’t broke, don’t fix it.” I don’t know if my doctors agree with my decision right now, but since they aren’t calling me back. I may change my mind as the months go on, but I can’t spend every waking minute thinking about this. I need to live my life.

Believe it or not it has been almost 3 months since this latest tumor was discovered and it’s time for me to re-scan. I have a CT scan and bloodwork scheduled for the 2nd week of March. I have a follow up appointment with Dr. Caughey, my replacement oncologist, to discuss the scan. I’ll probably send my scan to Dr. Goodman to read as well and see if he has anything new to say. This week I am meeting with a couple of doctors at MGH to discuss the proton beam and cyber knife options, but they weren’t very encouraging when I initially contacted them so I am not expecting much to come of this appointment.

I apologize for the length of this post, the amount of time that has passed since I last updated, and the heaviness of the subject matter. As you can all imagine this has not been an easy time for me and wrestling with these decisions has completely exhausted me. I can’t believe it’s March already. We just celebrated Cooper’s first anniversary in our home – it’s hard to believe he hasn’t always been a part of our lives; he takes full advantage of his status as top dog. I have my annual Pogues concert to look forward to in just a few weeks, amazingly enough Shane McGowan is still alive – woohoo!!! And last but certainly not least – I need to wish a Happy Birthday to Pat, my better half, my rock. Love you honey!!!

A Lot to Think About

I wanted to write a brief post to let everyone know that my appointment last Wednesday with Dr. Goodman went very well. Pat and I liked him immediately and spent two hours talking with him. He is new to Boston, but has trained under the PMP specialist in Pittsburgh (Dr. Bartlett) and then practiced on his own in California before being recruited to Boston. He is at Tufts New England Medical Center which is a huge hospital complex in downtown Boston. Dr. Goodman reviewed my most recent scan, immediately diagnosed a recurrence and after getting the truncated version of my history, jumped into what his thoughts and plans for me would be. He was personable, compassionate, and not intimidated by the amount of knowledge that Pat and I have about this disease. He believes in sharing information, thinks the bulletin board support group I belong to is a great resource and knows that the Internet can be useful tool. I have no doubt he will check out the URL’s that I gave him, especially when I said I heard about him via a chat room – it’s better PR than any hospital can provide!

Pat and I left the hospital with our heads spinning. We have a lot to think about and I will spell it all out later. I took a few days off from thinking about this stuff to relax and clear my head. I am actually in the midst of a busy week at work so I won’t be posting a follow up until Friday at the earliest.

I do have one small request – send some prayers, well wishes and good thoughts my way next Monday, the 28th. I saw my urologist Dr. Karian on Wednesday prior to my appointment with Dr. Goodman (what a fun day that was!!) and he did a scope inside my bladder. Unfortunately he did not have good news for me. He saw ‘something’ inside the bladder which we are quite certain is tumor. This means that whatever is on the outside of the bladder has somehow penetrated the bladder wall. Typical PMP cells are not invasive and do not penetrate organs, they strangle from the outside. We know that my cells are not typical though since they were found in my urether during my last surgery. Dr. Karian would like to biopsy this thing to confirm that it is the same pathology. I mentioned this to Dr. Goodman at my appointment and without seeing anything he has no doubt about the pathology. He said it can’t hurt to check it out though. The biopsy procedure is relatively simple though somewhat painful and therefore it is done as day surgery. I am having it done on Monday, January 28 at Mt. Auburn. It involves general anesthesia - the biopsy will take less than an hour, but it will take me 2-3 hours to wake up from even that small amount of anesthesia!. We don’t anticipate any problems, but it never hurts to say a few extra prayers.

Why am I not surprised?

That many doctors go on vacation in early January?? I’ve run into this more than once, but since none of them told me this when we talked last week or made other arrangements for me, I take it to mean that I’m not an emergency case and can wait until they get back to make any decisions. Sounds logical to me.

I have a list of doctors that I needed to speak with this week. It’s intimidating to look at your “to do” list on Monday morning and have the first 5 line items be
Call Dr. Nauta
Call Dr. Karian
Call Dr. Abner
Call Dr. LaMont
Call Dr. Lange

Needless to say I was not in a hurry to make ANY of these calls and I procrastinated until Tuesday. (On Monday I went out and bought myself an appointment calendar, figuring I will need to start keeping track of all these things and I always forget to update my Yahoo calendar, I do best with pen and paper. Plus it was 75% off and it was The New Yorker Dogs calendar, with the first cartoon being a picture of a man in a hotel room on the phone saying “That’s nice honey, now would you put the dog on?” Of course in order for this to be realistic, it would be me in the hotel room asking to talk to Cooper and not Pat).

Getting back on track - I immediately assigned myself one phone call per day, for the rest of the week so that I did not feel quite as overwhelmed. And I started with the easy one - Dr. LaMont who is my gastro and whom I needed refills from so it wasn’t really related to my recurrence. I did fill him in on the latest, just in case he had any thoughts about something that could be done to help my diarrhea while they are inside of me taking care of the tumor. He didn’t but he said he would keep thinking and keeping looking. One phone call down, 4 to go.

I learned that Dr. Lange was out, and since I really didn’t need anything from him other than to update him on my progress (or lack thereof) that was 2 calls I could cross off. I called Dr. Nauta on Thursday and was told he was on vacation – which explained why I had not heard back from his assistant about the MRI he wanted me to do. Well, the ball is now back in his court to call me back next week. Being that I skipped Monday, I decided I could make 2 calls on Thursday. I called Dr. Karian’s office, where I learned that he had been waiting to hear from me – rather than dwell on the miscommunication, I spoke with his receptionist and she got me set up with the only available appointment next week for my cystoscopy – Wednesday. I felt as though I had finally accomplished something so decided to put off any other phone calls until Friday at the earliest. Pat is gone for a quick business trip so I may reward myself tonight by eating dessert first.

I’ll be having a busy day on Wednesday as I now have to go into Mt. Auburn in the morning for the cystoscopy, after which I’ll pick up my medical records before heading across town to Tufts New England Medical Center where I have an appointment with a PMP specialist, Dr. Martin Goodman. He’s new to Boston so I figured I need to pay him a visit and see if he has anything to offer – it’s only an hour from home, not like going to DC or Omaha. I’m not expecting to hear anything startling, but it’s always good to have new set of eyes review my case.

And that’s all from here. I’ll call Dr. Abner, the only name not crossed off of my day planner, tomorrow perhaps and see if proton beam radiation is an option for me. At least they have a machine at Mass General so once again I would need only go across town instead of across the country, if it’s even worthwhile for my type of tumor. Tomorrow is soon enough to delve into this.

Until later.
Jean

Technical Difficulties

We have been experiencing some outages with our web hosting service lately and are aware of the down time recently with the site. We are looking to move the site, but everything will be behind the scenes, so you’ll still find us at www.gasbarro.net .

Now that the site is back up, I have some news to share. I heard back from Dr. Nauta last week, and the first words he said to me were “I’m not ignoring you!” As we suspected he was consulting with other doctors and wanted to have at least the start of a plan before talking with me. Our conversation covered many bases, but to summarize:

1. He is not certain what he is looking at on the PET scan. He had not viewed the CT scan or the prior CT scans to compare the changes in the “growth”, but he planned to go and look at prior reports and scans to get a better picture of the situation.

2. Per Dr. Nauta: Dr. Karian (my urologist) has been informed and he also viewed the PET scan. He agreed with Dr. Nauta that it’s hard to tell what is or is not growing on my bladder and that further investigation was needed. He would like me to get a cystoscopy, which is when they insert a camera into my bladder. I’ve had this done dozens of times and it’s not a bad test to have. Dr. Karian thinks if this is a tumor “on” the bladder he might see evidence of that inside the bladder in the form of indentation or pressure (as I am not having any bladder related symptoms yet…) I still haven’t talked to or touched base with Dr. Karian.

3. Dr. Nauta wants me to have an MRI done and he wants a neurologist brought in if in fact the twitching and muscle spasms I am experiencing are related to this tumor. The MRI should be able to tell us if this “growth” has grasped a nerve as we suspect. And hopefully it will give them a bit more clarity as to what we are dealing with.

4. As always, Dr. Nauta was looking for the best of the best for me. I told him if surgery was going to happen, he had to put together the best team possible for me at Mt. Auburn because that was the only place I would agree to be admitted to.

5. I told him I still had 15 plus episodes of diarrhea per day and had barely begun to feel OK enough to travel etc, so delaying surgery as long as possible was my preference.

6. After 30 minutes we had covered most of the important points. This week I’ll be making follow up phone calls and setting up my next 2 tests before deciding what the next step is.

7. I told Dr. Nauta that there was now a PMP / appendix cancer specialist in Boston and that I would be seeing him this month for a 2nd (or maybe it’s my 4th or 5th…)opinion. In typical fashion, Dr. N said “that sounds great – you know I’m not territorial”. That’s just one reason why I love this team of doctors.

And that’s all I know. I took the weekend off from all things cancer and spent some time reading and relaxing in NH while Pat hit the slopes. We did make some time for sledding (37 year old bodies just don’t appreciate “catching air” in a plastic saucer) and skating (only fell once, but it was spectacular according to Pat and the bruise that stretches from mid-thigh to mid-butt).
Thanks to everyone for the thoughts and prayers. I appreciate and need them all.

No News Yet

I wanted to post an update even though I don’t really have any new news to share. I have not yet heard from Dr. Nauta and our theory is that he was giving me a break over the holidays since we wouldn’t be doing anything before the new year anyway. I decided that while I appreciate this thoughtfulness, I need to know “something” and put a call into his office today. His secretary, who knows me well, said she would make certain he called me back today, even if it was just to tell me that he has nothing to tell me yet. That’s all I need.

Dr. Lange and I talked only briefly about this recurrence when I saw him. I think the timing of this caught him off guard and he was hit as hard as us. I did break my record for the longest period without a recurrence, but we were hoping I’d get to at least 2 years. I still may as we don’t know what the plan will be and I’d like to delay another surgery if at all possible. I just started feeling strong and well enough to travel – I’m not ready to give it all up yet!!

Not the news we were hoping for

No cute headlines this, no beating around the bush; I’ll get right to it. My last CT scan did not go as we had hoped. Two hours after I left the hospital I got the dreaded phone call – “They saw something on your scan and want you to do a PET scan before you see Dr. Lange next week.” They scheduled the PET for last Friday – this was my first PET scan and I was happy to learn that all I had to do was not eat or drink for 6 hours before it, no other prep. So I did just that and went to work Friday assuming I would leave at 11am for the noon scan. Phone rang at 10am, the machine was broken and they were going to try to fix it, so don’t come, but don’t eat either cause we want to fit you in, we cancelled all the other scans for the day, but the doctors want yours done. (Yes, this did cause me some additional anxiety). In the end they were unable to fix the machine and the scan was moved to Monday morning.

I went in first thing Monday, got the radioactive injection, sat around for an hour, and then had the 26 minute head to knee cap scan. I think I actually fell asleep so I guess I was relaxed. The promised to have the results by my 3pm appointment with Dr. Lange.
At 3:30 when I was finally ushered into an exam room, Dr. Lange was empty handed – the results were not in yet. So he placed a phone call and began the discussion with us. Even without the PET results he felt confident that this was a recurrence, the CT showed something on my bladder that had substantially increased in size since my last CT in August. It now measured 22x19x26mm so it’s small, but again it’s the location. They were hoping the PET would be able to tell if it was hovering near the bladder or actually on it. My blood markers were all over the place, some were up, and one was down. What this means is anyone’s guess, but the fact that they had been rising lately suggests this tumor had been growing since at least April. Given its current small size this could mean a slow growing tumor.

The results came in about 20 minutes later and just confirmed what we already knew. The suspicious spot near the bladder was alive, hence tumor. They could not tell if it was attached or not, but we have reason to believe it is. And my bladder is already pea sized (OK, not quite pea, but it’s tiny) so chances are that this tumor will end up costing me my bladder. I can’t say for certain yet because everything was sent off to my surgeon Dr. Nauta and we are still waiting to talk to him and get his input on the whole situation. This may not be until after Christmas, which is fine by me because we can’t do anything until January at the earliest anyway.

I can say for certain is that I am only experiencing minor symptoms from the tumor. Lately I’ve had twitching, uncontrollable muscle spasms in my right leg that have kept me up at night and sometimes really annoyed my seatmates on the train home at night. We think this may be the tumor pressing on a nerve…lovely – I just got use of this leg back!!! I am not having any problems with the bladder itself, no urgency, no pressure, no having to go 20+ times a day (if only I could my other end to slow down….). So this is all good news. The tumor is small and not problematic yet. Not sure what this means in terms of options.

I’m going to sign off here because I don’t really have much more to add. I will post again after I talk to Dr. Nauta and have a better idea of what the plan may be. In the meantime I’m going to enjoy the beautiful winter weather, watch Pat do some much needed skiing, and wrap a bunch of Christmas presents.

Thanks for your prayers and well wishes – as always they mean the world to me. Merry Christmas one and all.

No news is….

I’ll start with the good news – my CT scan (which is 18 months since my last surgery) was clean. This means the radiologists at Mt. Auburn did not see any visible tumor or changes since my last scan. This is a milestone – the longest I have gone between end of treatment and recurrence is 18 months. Since this last time I did not do any treatment other than surgery, the countdown began as of March 2006. We won’t go so far as to say “tumor free” but things are headed in the right direction.

I have the best intentions. I have written at least a half dozen posts for this blog over the past 2 months though none have made it out of my brain. By now I’m certain I’ve lost much of my audience, but I know you’ll be back. I planned to post an update when I had something new to tell you. I was waiting for the Sandostatin injections to kick and get things under control. I wanted to be able to tell you that I was now under 10 bathroom visits per day, that I no longer needed to seek out Kaopectate caplets, that I didn’t need to worry about having to take liquid opium on a plane with me to the Bahamas, that I was able to get on a plane to the Bahamas with food in my belly and no concerns about window or aisle seat. I could go on, but I think perhaps you may be getting the picture.

I’ve been on the Sandostatin injections for almost 3 months now and am now on the maximum dose which means three injections a day and there has been no noticeable improvement. I still have to take Kaopectate, codeine and DTO with each meal. I have had some good days when it seemed like maybe I was making progress but these were usually followed by a day spent entirely in the bathroom. The only change I made that seems to help a little is cutting back on my liquids. Instead of 60 or 80 ounces of Vitamin Water® I try to keep it down to 30 or 40 and walk the fine line between being healthy and being dehydrated and I’ve succeeded in avoiding any trips to the ER.

I saw Dr. LaMont a few weeks ago and we talked about my situation at length. He is frustrated that nothing seems to be working and that he can’t think of anything else to try. I have tried everything he could think of, except TPN (IV feeding). I told him that’s just not an option. It would mean I would not have to eat by mouth and that I would get all of my nutrients etc from overnight feedings. I could eat during the day but I’d suffer with my current consequences, so what is the point? It really wouldn’t be an improvement of my lifestyle because I still couldn’t travel and I’d be sleep deprived to boot. Basically he said that I have Short Bowel Syndrome, diagnosed by ruling out every other conceivable reason for 15+ trips to the bathroom per day. We don’t know exactly how many feet of small intestine that I have left, but Dr. Nauta last estimated it was somewhere between 4 and 6feet, but the only way to know for certain is to measure it by hand, which isn’t an option until my next surgery. I have operative reports for all of my surgeries, but they don’t all contain the exact measurements of what was removed. It doesn’t really matter because even if it is “officially” diagnosed as Short Bowel Syndrome, there is no other treatment or medication option other than what I have done, but I would like to be able to put a label on my condition. “I have SBS caused by PMP, so I take DTO….”

A few days after my appointment Dr. LaMont left a message that he wanted to talk to me about some ideas he had. After a bit of phone tag and a 2 week vacation (on his part) we connected. I got my hopes up, thinking he had come up with another test to run, or another drug to try. But no, all he wanted was for me to run a bunch of blood tests because he is concerned of the effects this chronic diarrhea is having on the rest of my body. He knows I am tested regularly for my tumor markers and cancer cells, but he had me run a bunch of other tests – potassium, vitamin D, carotene, etc. Bone density is just one of the problems he is afraid I am going to experience from the lack of nutrients. Fortunately it was time for my quarterly check up with Dr. Lange so I had the nurses at Mt. Auburn run these tests for Dr. LaMont.

Besides this blood work, I had my quarterly CT scan. Barium…yummm. That stuff just never gets any tastier and my body just never seems to adapt to it. The funny thing is that I know several people who have PMP who cannot take the barium because it stays in their intestines and causes bowel blockages. Me, I have the opposite problem – I have to take 15 ounces the night before and 15 ounces the morning of my test, with no other food or drink in between. Needless to say I’m quite cranky by the time the test is over – I’ve been going to the bathroom all night yet I haven’t been able to eat or drink. This time I had Pat get me a bagel and water and be in the waiting room after my scan. I also talked with the tech who agreed that given the reaction I have to the barium; I can skip the night before drink before my next scan. Yay!!

Dr. Lange was pleased with my CT result – though as usual neither of us is doing a happy dance. The blood tests Dr. Lamont ordered were all fine which means I am not malnourished and I seem to be absorbing enough nutrients. However, my tumor markers rose a bit more. These are 4 tests that are supposed to indicate presence of tumor in the blood – even though PMP doesn’t spread through the blood, these markers have been accurate. They’ve been on a slow rise since my last surgery, but since there is no tumor visible on the scan there isn’t anything we can or will do. They have never returned to normal levels since my initial diagnosis, and while these markers are labeled “high” they aren’t in a danger zone yet. We debated sending the scans and blood markers to one of the PMP specialists, but after further discussion we decided against this. Even if they were able to spot something on the scan that they team at Mt. Auburn missed, there is nothing to be done unless the tumors cause some sort of interference. So we’ll continue with the watch and see and re-scan in 4 months.

And I promise to write more often – even if I have nothing to say. Next week I see Dr. LaMont again and maybe he’ll have some good news or something new for me to try. I am getting antsy and feeling the need to travel, especially since Pat just spent 2 weeks in Shanghai without me!!!

Needles and injections and bruises…oh my!!

I had my follow up appointment with Dr. Lamont last week. As we already knew, all of the preliminary blood tests that he ran came up negative so the first thing we tried was to add probiotics to my usual regiment of medications. After 3 weeks of this, there was no change in the number of bathroom trips per day, so we knew that we had to try something stronger. As we had previously discussed, my next option was Sandostatin. The good news is that there is now a generic form of this drug (which saves my insurance company a good $10,000 a month) and I can now get the drug from my local pharmacy rather than having to do mail order. I’m grateful for the small conveniences.

So, I dropped everything off at Brooks (soon to be Rite Aide, but I’ve been assured nothing but the name will change and that they will still be as helpful and compassionate as always) on Wednesday. I then went home to do a little research. My previous experience was with Sandostatin and this time I would be using octreotide which is the generic. Same stuff and administered the same way, just cheaper. Basically octreotide is a man made protein that is similar to a hormone in the body called somatostatin. Somatostatin signals the pituitary gland to reduce the production of growth hormone. Octreotide lowers many substances in the body such as insulin, growth hormone and chemicals that affect digestion. Both octreotide and somatostatin work in the same way to reduce excess hormone secretions that alter various metabolic activities – and improve absorption of excess liquid in the intestines and colon.

After seeing this all spelled out I guess I do have some concerns about playing with my hormone levels, but my previous experiences with Erbitux, CPT-11, 5-FU and all those other fun chemotherapy type drugs have wreaked havoc with me so nothing really works as it should. And if octreotide does decrease my bathroom visits to under double digits per day, then it’s worth it to me to get at least some sense of normalcy back in my life.

By Friday, I had my first vial of octreotide and 28 syringes to get me started. Unfortunately Pat left on Friday morning for a weekend of fishing (yes, I did say fishing…) so I was on my own to administer the first 5 injections. I had done this previously so I was not too concerned and I still have nerve damage in both legs so I figured that would be the best place to start. 24 hours later I had my first 2 black and blues and a third one on the way. Since you have to rotate injection locations, I am able to decorate my legs and arms with lovely bruises and not have to punish the same location time after time. By Sunday when Pat arrived home the damage was already done. He has administered every shot since his return. And guess what? No new bruises!! Woo hoo!! I think perhaps he spent the weekend practicing injections on the fish because last time we went through this, he was not this good. (See posts from April – August 2005).

I’ve now had 14 injections and so far I’ve experienced migraines, nausea, and my diarrhea has actually increased – 5 rolls of Charmin Ultra in 5 days. I spoke with both the pharmacist and my doc and we decided that if I could handle the side effects, then we would continue and hope things take a turn for the better in the next week. When I reviewed my notes from my last rounds of Sandostatin, I did see that I had an increase in the diarrhea before it got better, so I am hopeful. Also I am on the lowest possible dosage. I am going to talk to the doctor next week about possibly increasing the daily injections to 3, and perhaps more milliliters at each injection also. I really, really need this to work because there is no other plan. We don’t know where to go if this doesn’t work. As it stands right now, twenty plus trips a day to the bathroom, including 8-10 overnight do not make for a well rested and energized Jean. Pat is fortunate to be traveling so much as at least he gets a couple of nights of good sleep. Poor Cooper bears the brunt of my overnight bathroom trips (black dog who insists on sleeping in front of the bathroom door is bound to get stepped on once or twice).

Though I have no work travel on my radar, Pat has been taking bi-weekly trips to lovely Columbus, Ohio for his job. Lucky him! We’d both love to take a real trip somewhere but I refuse to even consider it until I have some sort of control over this diarrhea. Just last night I used the bathroom in my office before I left for my train, used the bathroom in the train station, then the one on the train, and then made Pat stop on the drive home because I had to go yet again. Get the picture? I don’t feel comfortable in my hometown and local surroundings; I can’t imagine someplace where I don’t speak the language. So all travel is on hold – quite a change from years past. And I miss it. There are so many places I want to go. Not someday, not eventually. But soon. And often.

In the meantime I have my garden and my Cooper, oops, that’s Our Cooper. He’s a great dog – loves us both equally. Funny dog too – keeps me entertained. Loves the bathtub and the shower. After his daily runs he immediately goes into the downstairs shower stall – I finally gave up and put an extra water bowl in there for him. If it makes him happy that’s all that maters. He met his doggy cousin Kibbee last weekend. She’s a couple years younger than him, but they could have been brother/sister when they stood next to each other – two beautiful black labs. But she’s definitely more slender and he quickly learned she could/would outrun him. So like a true gentleman he gave up the chase and let her get the ball first. He continues to keep me companying while I’m out weeding my garden or doing my nightly watering. He knows exactly how to sneak in and lap up some excess water from the hose when my back is turned. And I know how to pretend I don’t see him.

Now I must run...guess where?? Fingers crossed that things begin to improve over the next week.

Blame it on the rain…

Actually that should be sun. Blame it on the sun. We have had an absolutely beautiful month of May here in the northeast, which has led to me spending much of my free time outside in the yard, in the garden. I’ve discovered that I enjoy gardening. And I’ve got lots of dirt to play in. My dad came east to help me get me started – which actually meant he did all the hard prep work and I watched and took notes. Together we made several trips to the nursery, picked out lots of low maintenance plantings, and planted. And planted. And watered. And mulched. I discovered that I may not have a black thumb after all and digging in the dirt is a great way to relax.

Now onto the medical update. I had my quarterly CT scan, blood work and appointment with Dr. Lange in April. We did 2 separate scans, a chest CT in early April because of some pain I was experiencing, then the abdominal scan at the end of the month. There was no sign of new growth on either scan. We have not yet figured out the cause of the chest pain, so we’ll watch and wait. The abdominal scan showed no change since January. There are 2 approved radiologists who will do all the reads of my scans going forward. Dr. Lange and I are still debating the merits of sending the scans to one of the specialists to read since Mt.Auburn’s team has not been successful at identifying these tumors before they cause me problems. However since I’m feeling fine and having no difficulties, I think for now we will leave well enough alone.

My tumor markers are a slightly different story. They continue to rise. Not huge amounts, but it’s still the wrong direction. We’d rather see them drop or not change at all. Not much we can do about this except continue to monitor which is what we will be doing.

We had our usual appointment with Dr. Lange. We both know that this is my “danger zone”. All of my recurrences have happened by 15 months after last treatment and I am approaching that timeframe. So to avoid talking about this touchy subject, we discussed my ongoing bathroom issues. The chronic diarrhea that continues to plague me, sends me running 5 minutes after ingesting food, and basically rules my life. He is stumped, but he did make a suggestion.

He found me a new gastroenterologist. I was hoping to find a doctor outside of Boston to avoid the 3 hour doctor appointment (1 hour drive each way to/from Boston, plus 1 hour in the appointment.) but this new doctor is at Beth Israel. His name is Dr. Lamont. Dr. Lange gave him my basic background. I called him on Friday to set up an appointment, he squeezed me in the following Monday and by that Thursday I already had some answers.

Pat and I were very impressed with Dr. Lamont. He spent an hour with us, listened to what we had to say, asked us questions, asked me to explain appendiceal cancer and my surgeries, made suggestions, and expected us to ask him questions. He was impressed, not intimidated by our knowledge and research and is more than willing to take on a challenge like me. We devised a simple plan – first test me for all the run of the mill issues, typical causes for diarrhea, check for bacteria, etc. Much of this was done by simple blood tests; others required a little more participation from me. Dr. Lamont told me to call him that Thursday for the results of my tests. I did and he returned my call within 30 minutes. Amazing….

I tested negative for everything. I have no parasites, no bacteria, no salmonella, and no c-diff, nothing in my system that shouldn’t be there. The bacteria that I have are in just the right quantities – no bacterial overgrowth. This really wasn’t surprising to either of us, but we wanted to make certain we covered all of our bases. We were hoping that perhaps my problems could be resolved with some antibiotics, but that was not to be. So, by process of elimination we have diagnosed me with “Short Bowel Syndrome”, which basically means I do not have enough small intestine left to process food as it goes through my system. There is not enough colon left to drain out the liquid from food as I digest it, hence the diarrhea. There really is no way to resolve this. The best we can hope for is to find a way to control it.

The plan for now is to continue my current medication regiment and try adding in some additional medications or supplements. So this month it’s my usual – Kaopectate (though we are trying to find a replacement for this as I run out of my supply), codeine, dto, and apple pectin with the addition of probiotics. These are “good” bacteria, which can be found in some yogurts, but also can be taken in pill form. I am currently taking these in pill form twice a day.

If probiotics don’t work, the next thing we will try is Sandostatin. This was the injectible that I used back when I was on Erbitux. It worked OK when I was on Erbitux, but we think perhaps it might work better without the Erbitux. It would mean twice a day injections for awhile and lots of black and blues. But that would be a small price to pay if it worked.

For now I’ll continue with the probiotics until my next appointment with Dr. Lamont which is sometime in early June. And my next CT scan and blood work aren’t until August. I’ll be back long before then.

Spring is in the air

Really, it is. Look at the calendar. It’s springtime. OK, so I had a fire going in the woodstove this afternoon, wore a hat and gloves to work yesterday and haven’t yet removed the down comforter from our bed, but it's spring in New England just the same. Though we’ve had rain and downpours the past few days and parts of our yard are like a swamp, we know how lucky we are to have escaped any damage from the storms. And I discovered that Cooper loves water be it rain or in the shower. He enjoys getting wet which means we must get wet also. The joys of pet ownership…

I want to thank all of you for your help with locating more Kaopectate caplets. Thanks to all of you I got about 30 days worth. We still haven’t found a replacement, but we are working on that. I have cleared out all the internet pharmacies and shops (and ebay auctions), the Brooks Drug warehouse and every Brooks in MA and RI. During a recent trip to PA I was able to locate two more boxes in an Eckerd. I feel like an addict – every time I see a drugstore I have to pull in and take a look. So thanks again I really appreciate your time, effort and suggestions. And if you find any more, I’ll take it.

I’ve been lax with updating lately and I know that causes some of you to worry. I apologize. My excuse is mostly laziness, with a little indifference and frustration mixed in. I don’t have anything new to report, but I do have some old stuff to update. Basically what has happened is that over the past month my diarrhea has gotten worse. And by worse I mean back to almost 20 times a day. It’s now officially affecting my quality of life. I am able to continue working, but that’s about all. Every decision I make is based on eating and access to a bathroom. It’s gotten old. Travel in any form is out of the question. This does nothing to improve my mood.

Acupuncture and the lovely dirt tea that I’ve been drinking have not helped either. My acupuncturist shakes her head each time I come in and tell her that things have not improved. She really is trying all that she has, but I know she is delving into new territory and the usual stuff just won’t work for me.

Since my usual crew of doctors and specialists have no idea what to do with me and my last experience with a gastroenterologist did not work out, I’ve been hesitant to look for anyone new. But I made a deal with Pat, so we’ve started the process all over again. After talking to a family friend, we decided that perhaps the best thing we could do would be start all over again. I’ve been against trying any new doctor, insisting on keeping all my medical care at Mt. Auburn so that the doctors could access all my records, but that doesn’t seem to be helping. And it’s getting to be a drag spending 2 hours commuting for a 20 minute appointment.

We are looking for a new gastroenterologist, preferably out here in the sticks; though we’ll go wherever we need to if someone thinks they can help me. Then we will start from scratch – let them do all the non-invasive and simple initial tests (blood work, stool samples, physical exam) to rule out the basics. I am going to avoid self-diagnosing and try whatever they ask of me. Anyone who knows me, knows this is not something I say easily. The only thing I will negotiate is when/if they suggest a colonoscopy. But I’m getting ahead of myself. Before I refuse any tests I need to find a gastro and put myself completely in his (or her) hands. (Unless he also fixates on IV feeding and doesn’t make any other suggestions to me. I also realize now that Dr. R never ordered any tests, blood work or otherwise on me. He just simply kept telling me I had to gain weight in order to slow things down – guess I proved him wrong since I did gain the weight, but didn’t slow the system down).

So that’s where things stand for now. I’ve got a CT scan and appointment with Dr. Lange next week, so I’ll update after that.

Kaopectate Caplets, where have you gone?

I guess that’s a rhetorical question – I know exactly where they went. Pfizer discontinued them, and then sold the brand to a small company in Tennessee. The liquid is still being manufactured and can be found, but the caplets, they are gone. I’ve cleared most of the shelves here in MA, bought out any I could find online, have sent urgent requests to friends and family around the country to look for them, and have managed to locate a few boxes here and there. I have about 1 week worth left. I’ve switched to the liquid for home and work. The caplets for me were more about convenience. I mean, who wants to carry an 8 oz bottle with them everywhere? And exactly how am I supposed to take a trip – put 10 bottles of the stuff in my suitcase, and hope and pray the TSA lets me take a bottle with me on the plane?? Thanks Pfizer.

I don’t know why Kaopectate seemed to work and yet Pepto Bismol, with the exact same active ingredient, bismuth subsalicylate, in the same strength 226 mg does not work. I don’t know why Imodium has no effect. The doctors don’t know. They shake their heads and say “hmm…it “should” work”. They have no advice on what to do now that my precious Kaopectate caplets are gone. I tried not eating, but still drinking so that I don’t get dehydrated, but guess what - I still had diarrhea! No, the Kaopectate didn’t get rid of it either. Yes, the liquid helps somewhat. So I am taking that, but the truth is that things have gotten worse in the past few weeks. And I don’t know what to do or how to fix it.

So if you happen to be in a Brooks drugstore, look at the shelf. See if they have any Kaopectate caplets – this one (not the stool softener). If they do, buy them and send them to me. I’ll pay ya for them. Thanks. CVS, Walgreens, RiteAide, Walmart, Target, Shaw’s, Stop & Shop all do NOT stock them- don’t bother I’ve checked. I’ve also emptied the warehouse for Brooks, drugstore.com, etc.

It’s amazing the difference a year can make. Last year at this time I couldn’t walk, I was undergoing my 3rd operation in 3 weeks, spring seemed light years away, and I felt completely helpless. At least now I can walk, the crocuses are blooming, and no one is chasing me with a consent form and a scalpel.

Doctor's Visit

Pat and I met with Dr. Lange last week to discuss the latest CT scan. “Stable” was the one word description. This means, when we dissect the report word by word, that there are no visible tumors. Nothing has changed since November when nothing had changed since August. Exhale. Moment of relief. Inhale. Begin to think. Bad idea. Recall that the same phrase was uttered in January 2006. Yet by February 2006 I was planning another surgery and one year ago next week I was being sliced open. Again.

So please forgive me if I don’t do a happy dance right now - if I remain a bit skeptical and don’t have faith in the abilities of the radiologists at Mt. Auburn. It’s not their fault. PMP is rare disease - it’s difficult to diagnose, impossible to be found unless you have read hundreds of PMP scans. Dr. Lange agrees.

So do we take my scan and send it to one of the specialists, Loggie, Esquival, or choke…Sugarbaker? But wouldn’t that be like looking for trouble – like walking up to cop and taking a swing at him for no reason, other than to get arrested? I mean what do I stand to gain from having one of these guys look at the scan. Perhaps they see something miniscule, and then I just end up twiddling my thumbs and waiting for it to grow or cause some trouble. If I don’t send it to them, isn’t that just burying my head in the sand and pretending all is well? But isn’t it possible that perhaps right now, in March 2007, all is well for me? I guess so.

Dr. Lange was right there with me as a conversation similar to the above played out in his office. There are no “right” answers. It’s my decision – Pat and mine. We aren’t ready to repeat last year just yet. We just finished painting the inside of the house. Cooper is still getting adjusted to us; we are still getting adjusted to Cooper. I need a break. I need to put my blinders on and earplugs in “Lalalala…” CT scan from February 2007 says no evidence of recurrence. OK, great. Let’s compromise. Dr. Lange suggests a re-scan in 2 months rather than 3. Hmm…barium in April instead of May. OK, I can work with that. Agreed. Appointments made. Two month reprieve from cancer. Yea, right.

I’ll apologize now if any of the above sounds a bit glib. I am feeling a bit frustrated right now and writing is the best therapy for me. And so is having a dog. Amazing how nice it is to come home and be met by his adorable face and wagging tail. Even when I don’t give him a treat, he seeks me out. It’s nice having another breathing being in the house when I’m home alone.

I’m continuing my acupuncture. It seems to be helping somewhat with energy levels and overall well being. We are discussing testing to see how well it is working on my diarrhea issues, so I am tapering down my use of DTO, Kaopectate, and Apple Pectin. Today however I’ll be using all 3 as I don’t want to have any problems at The Pogues concert later this evening. Yep, Shane McGowan has lived another year. Yay!

Present Day

It’s the end of February and I think the blog is up to date with the important details of the past 3 months, though I do have a few anecdotes that I will eventually share – hint: mustard and border crossings. For a short month, I ‘ve packed a lot in: I’ve had my CT scan, done my bloodwork, seen Dr. Robinson, returned to work 4 days a week, started acupuncture, and have my follow up with Dr. Lange on Tuesday. I am approaching March 17 and the one year anniversary – I think I may have been a little too blasé in my last post because even though I say I am not nervous or anxious during this period I find myself chomping my nails, losing my concentration, and worried about the test results. Some days I can convince myself not to fret and to engross myself in other activities and other days I can’t. Today is one of the days that I can’t.

I scheduled a visit to Weyman 3 on the day of my CT scan so the nurses could access my port for the scan and do my blood draw at the same time. This means that Dr. Lange will have my tumor markers (blood tests that can indicate the presence of tumors) and my CT scan at the same time. Ideally this is the best way to do this because we can see the whole picture at once and with the tumor markers, we are looking for trends – is my CEA elevated, where was it last month? What about CA 125, is that on the rise? CA 19-9 – up or down since last quarter? However these numbers can be affected by different things – did I have a cold the day they did the blood draw? Was I dehydrated that morning? So I usually only review them for a period of time and not individually. And since my first surgery 7 years ago some of them have never returned to so-called normal levels. My CEA is never in the range for a healthy 36 year old female who has been through menopause. But if we see a significant trend, then we might have to take a closer look at the CT scan or do another draw sooner than the usual 3 months.

The nurses all noticed that I had gained weight and agreed that I looked much better. It’s amazing what 7 pounds can do for you. And as always I noticed the looks of pity, of question, the why are you on this floor? Who are you visiting, why are all the nurses stopping to chat with you. You look to good to have cancer, so you must be a caregiver, but why are they taking blood out of your port? Why do you have a port? Even after 7 years, I still find it easier to give a small smile then look away. If only they knew. Just as I was leaving Dr. Lange walked past my room looked at me and kept walking, did a double take and came back. “What’s wrong? You aren’t on the schedule for today – why are you here?” I pointed to my port and said CT scan – I see you in a week and a half. He looked relieved.

CT scan went fine – John, the radiology tech was impressed to see walking and without assistance and agreed with everyone else that I looked much better than I had the last time. I’m starting to think that perhaps I looked particularly washed out and unhealthy during my last check up or maybe I was just frazzled from the drive in and the traffic. Ten minutes later we were done and I was on my way back to Holliston. And trying to put the day in the back of my mind and not let it creep into my thoughts on a daily basis.

I had other things to think about anyway. I am now officially working 4 days per week – two in the office and two at home. So far I seem to have the stamina for it and I know I am very, very fortunate to be able to have a schedule like this. I decided to work from home on Mondays and Fridays and in the office on Tuesdays and Thursdays. This way I have Wednesdays as a day to regroup since my stamina still isn’t up to par. I am noticing subtle changes recently – I can keep a busy schedule for a few days in a row and then I only need a day to recover instead of a weekend. I’m looking for a short business trip to test myself on.

Part of the stamina may be due to my latest therapy – acupuncture. I did it years ago during chemotherapy and it seemed to help with my energy levels so I figured it couldn’t hurt to try again. It doesn’t interfere with any of the other things I am doing, and I am continuing to take my medicines (DTO, Kaopectate, Apple Pectin, and Codeine). I am going to Chinese Medicine for Health in Holliston and the woman doing my treatments holds a western medical degree in addition to her training in eastern medicine. You don’t really feel the needles during acupuncture so I don’t mind the needles, plus I get an hour of solitude and relaxation during each treatment. We talked about my history and my problems and are tackling the easier issues first. My energy levels have definitely been on the rise, though I still have days when it is tough to get started. She is very interested in helping me with some of my bigger problems and hopes she can do something about the diarrhea. We’ll see. I’m hoping to add some meditative exercise (Qi Gong) to my routine as I begin to feel better. But I’m getting ahead of myself. First I need to get my test results and open the next chapter.