April 06, 2008
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