OK, so perhaps the anxiety of waiting for my latest MRI results is weighing a bit too heavily on my mind at the moment, but I sat down to write “My Story” to add to their site and this is what came out.

So if you are around on Friday night – tune in and see what they have to say – who knows perhaps enough of my PMP Bellybutton friends will have posted their stories too and maybe Katie Couric will do a Shout Out to all us PMP’ers.

Stay tuned for the next installment in my “Desperately Seeking Adrenaline” Adventure series.

How did we end up jumping out of a perfectly good plane on a beautiful Saturday morning in August? I think most of you know that this was probably not Pat’s idea – it wasn’t, I take full credit. And I told him he did not have to do it with me – it was something I wanted to do. Yes I preferred if he was up there with me, but it wasn’t a requirement. I know he isn’t fond of heights, OK so he’s a bit terrified except when hiking or skiing, but take away the solid mountain of earth beneath your feet and it’s a different story. Poor guy – first the Eiffel Tower now skydiving – he must really love me or something. But he went willingly and in the final images of each of us prior to leaving the plane, he looks calm considering he is about to plummet several thousand feet in a matter of seconds – perhaps it’s because his eyes are closed and he (smartly) decided not to look down 13,000 feet. Me, not so much. This was my idea and even up into the plane as I watched others jump before me, I was smiling and enjoying myself. Then the first of the 3 tandem divers went, then Pat went, and next thing I knew I had to walk 3 feet from the end of the bench to the open cargo door. Yea, right. They have you cross your arms across your chest, to prevent you from grabbing the bar and stopping the jump. I don’t think I could have moved mine to grab that bar, though the thought definitely crossed my mind. And I didn’t walk those 3 feet – uhuhh. Al, the certified (40 years experience) jumper I was attached to basically carried me. And then there we were, at the open cargo door, the last ones to go. My cameraman was already outside the plane door, catching images of me that show a look of sheer terror on my face. I was never so afraid in my life – nothing and I mean nothing I have gone through, cancer included was as terrifying as standing there knowing I was about to jump, or to be more accurate be carried out into the open skies. My eyes are open and my face, well you really have to see it to fully understand. Al decided it would make a good video if once we stepped out of the plane we back flipped – in my mind I’m thinking, what happens if I throw up? Where does it go? Does it hit Al in the face and what will he do to me if I do that to him? Oh wait a minute, throwing up isn’t an option – I can’t breath – what if I lose control on the other end? Do I have a change of pants with me? Are they used to getting these jumpsuits back wet? Or even worse – what if I get hit with a bout of diarrhea…yikes…what did I eat last night and this morning? Is it going to hit me? Get the picture? Oh yea and this all happened in a matter of say 15 seconds – I’m a fast thinker.

Within 30 minutes of landing I had a DVD of my jump and a CD of pictures – instant gratification. Pat decided not to do the cameraman and we were fortunate that my guy Bryce realized we were together and got some shots of Pat and we even planned the jump sequence so that he could capture pictures of Pat jumping for which we were quite thankful – not that I wouldn’t vouch for him, but its nice to have physical proof that we both did this.

Some of you have asked why? Why this? Why now? We decided it was time to start crossing things off my “To Do” list. Though I’ve already said that I am not crossing skydiving off my list–I’m moving it to my “Must do on a regular basis” list. Now when I have a few hundred dollars burning a whole in my pocket instead of a massage, I may go skydiving instead. We both realize that this next surgery could be life altering for me, not in a good way. The outcome is not promising– it’s going to impact my quality of life. I will not have a bladder, but I don’t know what sort of hook up I will have – I don’t know if you can skydive with a nephrostomy – I haven’t asked. And I didn’t want to find out too late that you can’t and I missed the chance to do it. Also my leg – we don’t know if I will have full use of it after the surgery. If the nerve gets damaged and I lose the use of it I certainly won’t be able to skydive – can’t land if you only have 1 working leg – at least solo, possibly tandem. Dunno for certain, I haven’t actually looked into the possibilities I just assumed it would be better for me to do this when I had two functioning legs.

And now that it’s done it’s on to the next thing on my list. What will that be? I need to add a few more items to the list that will provide me with a rush of adrenaline similar to the skydiving. We’re thinking maybe hang gliding, bungee jumping, parasailing – it has to be fun, but relatively safe – I’m not looking at crazy stuff like street luge (but hmmm…snow luge or bobsledding perhaps??) and it can’t take years of training to reach the point that it’s enjoyable as I’m not looking to work at anything ;-) I just want to have some fun. Yea, I know, go to Six Flags and ride the roller coaster. One possibility that I have had bookmarked for like 5 years now is jump and raft, conveniently located in Maine – skydive one day, whitewater raft the next. Good possibility. This week though it’s back to earth: work, gardening, figuring out what to do with our weekly farm share – eggplant, summer squash, peppers, tomatoes, corn – yum!

1.Remove the bladder and connect the urether to the colon – which would mean all fluid would be processed through my colon, thus increasing my diarrhea.

2.Remove the bladder and connect the urether to the surface of the skin - very difficult to do as the urether is very thin and it’s near impossible to get an appliance to attach which means leaks are common.

3.Remove the bladder and connect the urether to the surface with a stoma created from excess bowel - no one knows if I have enough bowel to spare even this small amount. And according to my gastroenterologist removing any piece of my bowel will irritate it, set off the diarrhea again and chances are it will not ever heal nor slow down.

4.Remove bladder and urether and insert a tube into the kidney (nephrostomy) – chance of infection is great and the tube is permanent and has to be changed every 2 months (a several hour procedure that has to be done in the hospital)

I knew all of these, but it was good to discuss their pros and cons in detail with Dr. Karian. He also was able to add a 5th option – after scoping me he felt that he “might” be able to save a portion of my bladder and leave me with a very tiny but still internal bladder. Considering he felt that the bladder I currently have would not be practical for me that it would too small and I proved otherwise, we wonder just how many times I can beat the odds. Though at first this sounds like the best option - it’s not without a fair amount of risk and Dr. Karian is not certain he could do it. I could quickly discover that the bladder was too small, find myself cutting back on fluids thus dehydrating myself. And then I’d have to have yet another surgery to remove it when it turns out to be too problematic.

I thought I was ready to make a choice – or to be more accurate, to let the doctors make the choice once they were inside and could better see what was happening. I spent the last 4 months readying myself for this – making jokes like let’s have a “Bye Bye Bladder BBQ”; how I’ll now have a “wooden leg” and could drink a case of beer without ever having to leave the table; how I’ll be able to pee standing up now…etc. But I realized that other than scheduling the surgery and making my plans for my disability leave from work that I hadn’t really prepared myself. I chose to go ahead with the surgery because there are no other options – when I ruled out Proton Beam, Chemo, Radiation, etc, surgery was all that was left. So I didn’t chose it, I was stuck with it. And that’s not the same thing. I’m going through the stages of grief right now – and I’m stuck in anger for the time being. There’s a ways for me to go before I am at acceptance. And I don’t think I will get there by next week.

Based on this information, Pat and I decided we needed to talk to Dr. Nauta about some other concerns we had – and we thought we should probably talk to the neurosurgeon prior to the surgery to find out if there was anything we needed to be aware of in regards to the nerve. Remember those vacations I mentioned? So I haven’t been able to find out more information. And I feel like I can’t move forward just yet. I haven’t been able to say this in quite some time, but lately I’ve actually felt pretty good. I’ve been able to hike, bike, kayak and just be active. My pain is manageable and for days on end I am to forget about it. Other than some pressure on my bladder I am able to almost forget that this tumor is inside me and growing.

What I would like to do is postpone the surgery for a couple of months – rather than be pro-active I want to wait until I am symptomatic, but I need to find out the risks I am taking if I do this. I know the docs are afraid of waiting too long and having the tumor become inoperable, but I am not talking about canceling the surgery or putting it off for years. Just for a few months – giving me some time to actually enjoy life before making this life altering decision. This surgery is going to greatly impact my Quality of Life – and everyone knows that QOL is always forefront in my thoughts. I’m going to need some assurance that removing my bladder is not going to completely destroy my QOL and I haven’t gotten that yet.

In a nutshell, that’s where things stand. I have spoken with a handful of my doctors, some who are involved in this surgery and others who aren’t and the 2nd question out of all of their mouths was “why are you going ahead with this surgery right now?” I couldn’t and still can’t answer this. I think that it’s pretty obvious I am not in the right mindset to make a major decision right now. Pat and I are meeting with Dr. Nauta later this week and will bring all of this to his attention. I feel pretty confident that he will listen and we’ll be able to reach a compromise.

Thanks to everyone for their well wishes, thoughts and prayers. I will update later this week and let you know what we decide.

I’ll write more later, just wanted to send out the “save the date” info.

As we had previously discussed, July seemed to be the best option for many reasons. We decided to try for a Thursday since this was Dr. Nauta’s scheduled Operating Room time and so we knew this piece of the puzzle fit. We ruled out July 3rd because of the holiday and decided to try for either of the following two Thursdays – July 10 or July 17. The problem now will be coordinating the schedules of 4 surgeons to make certain they can all be available. Because Dr. Nauta is Chief of Surgery at Mt. Auburn, he does have some clout and I think this will make some of the other doctors a little more flexible with their time. At least I’d like to think so.

In addition to Dr. Nauta who will be doing the majority of the operation, the other doctors include my urologist, Dr. Karian, a neurosurgeon, Dr. Wells, and another general surgeon, Dr. Vittemberger who was actually the first surgeon at Mt. Auburn to operate on me all those years ago. He still recognizes me and says hello in the hallway when I see him.

I should get a final date from his office by the end of this week, but I feel much better knowing that we are this much closer to getting this over with.

OK, late night, much to do. Back soon.

I’ve also had surgeries that I knew about weeks or months in advance – and those are stressful in a whole different way. It is possible to have too much time to think about things – I end up trying to micromanage. Given my history of unexpected complications (my leg for instance…) I am actually not freaking out about the “what if’s”. I know I can handle whatever is thrown at me – at least physically. Right now my imagination is getting the best of me and I am assuming that the reason I have not heard from Dr. Nauta with my surgery date is that he can’t find a neurosurgeon willing to take on my case – that the doctors don’t want to operate on me because of my history and previous complications. I know this isn’t the situation, but in the 3 weeks since I met with Dr. Nauta and told him to go ahead and schedule things, this is one scenario that keeps popping up. I’ve been assured that this is a crazy thought and not even a possibility. I’ll rest easy when I have my date and list of doctors – maybe not. I’ll be able to focus on worrying about the actual surgery and recovery, something more concrete and reasonable to stress over.

I had the MRI done on May 13 and met with Dr. Nauta immediately afterwards. He had not had time to get a clear read of it, but he was able to say there wasn’t significant growth. However, we have decided to go ahead and schedule surgery for early July. Pat and I talked at length about this and weighed the pros and cons of delaying the surgery. The biggest concern is the proximity of the femoral nerve (and vein and artery) to the tumor. In an abdomen that has not undergone surgery, it would be easy to locate and avoid this, however my insides are so mixed up and full of adhesions that nothing is where it should be. I’ve had some leg issues over the past few months which we are attributing to the tumor pressing on the femoral nerve – twinges, twitches and one episode of the leg buckling out from underneath me. It could be unrelated which is what we are hoping, but we aren’t taking any chances. Dr. Nauta will be including a neurosurgeon on his surgical team to avoid a repeat of my last surgery.

We know that no matter when the surgery occurs, I will lose my bladder so this is a huge reason for me to delay the surgery as long as possible. The doctors don’t know what sort of hook up I will be left with (ostomy-wise) and probably won’t know until they go in. We’ve discussed a few options and before the surgery I will give them my order of preference, if it comes down to actually having a choice. There’s a good chance the decision will be made for me by the size of the remaining urether. The longer I delay the surgery, the greater the chance of there being small intestine, bowel, or colon involvement. Dr. Nauta does not see the bowel loop that Dr. Zeitman saw on my CT scan, but he can’t say for certain until he is inside. Since I would really like to avoid waking up with 2 ostomies, I’m opting for surgery sooner rather than later. We are hoping this will also mean the surgery will be less invasive than previous ones - perhaps the only area that will be impacted will be the bladder and I won’t have to deal with an NG tube, a bowel asleep for days, and a lengthy hospital stay.

Right now I am waiting to hear back from Dr. Nauta with a surgery date – he wants to assemble his ideal team for this –my urologist (Dr. Karian) and a neurosurgeon. Being summer and vacation season it’s harder to coordinate this many schedules. I’m seeing Dr. Lange this week just to check in and hope to have a firm date by the end of the week. Then I can start to get things in order to prepare – my mind, my work, the house, Pat, etc. I’m not looking forward to this. I just started to feel pretty good, got busy and distracted with work and am actually looking forward to the possibility of traveling. Instead I’m looking at surgery where the best possible outcome is the loss of my bladder. Enough said….

Fast forward to about two weeks ago and the crocuses (croci?) blossomed in all their purple and yellow glory. All around I noticed yellow blooms coming alive in other people’s gardens, but mine were not yet open, perhaps because this was their first year and I began to get a bit nervous. Then we had a few days of warm temps and BAM! I came home from work one day last week to blooming daffodils and narcissus. Yellow and white flowers surround the house. This made my day – daffodils have a special meaning to me. Eight years ago, a month into my first round of chemotherapy, I received a small vase of daffodils one day as I arrived for treatment. I think the American Cancer Society declared March to be “Daffodil Days”. Whatever the reason, those daffodils brightened my day and ever since then every March I look forward to the daffodils. Usually I buy a bunch; this is the first year that I was able to grow my own and these have even more meaning to me- as I type this I can look over at them smiling at me from their vase.

About a week ago the hyacinths emerged from their shells. Beautiful purple and pink blooms now joined the yellows and whites. I think I planted 10 hyacinth bulbs and 9 of them blossomed – I’m thrilled!! And then the azalea bushes burst out with magenta magnificence. There is one bush on either side of our front door – the only downside being the huge bumblebees they attract. We don’t stop and smell the blossoms, just admire them from afar. Each day as returned home from work I spent time walking the grounds, looking to see what was going to come up next. I didn’t have to wait long – the dwarf tulips made their entrance last Friday. Vibrant orange blossoms now joined my palette of color. I can’t remember what other color tulips I bought and rather than look it up in my spreadsheet (yes, there is an excel spreadsheet of the flowers in my garden…) I think I shall wait for the surprise. It’s more fun this way. Just this morning, I got my first peek – one lone yellow tulip opened overnight. I know there are lots more to come – more tulips, irises, lilies and who knows what else. I have to refrain from cutting everything to savor them inside – though I think I may have to bring some in for decoration later this week. I think our ninth wedding anniversary rates a bouquet from our own garden and save Pat the trouble.

I’ve been taking daily pictures of the gardens to send to my parents so that they can see the fruits of their labor. And because while there are beautiful flowers and colors in Arizona, there is nothing quite like a springtime garden in New England. When we bought this house, some people expressed surprise that we (Pat and I) would buy a property with so much outdoor space requiring attention as neither of us expressed much interest in outdoor chores. We had no idea what we were getting into, but I wouldn’t trade it for anything. There is a bit of nagging I must do to get assistance with some of the more strenuous tasks, but we are working out a fair division of labor – Pat takes the lawn and I take the gardens. Works for me. We are getting used to spending weekends doing outdoor chores and even Cooper joins in – now that I’ve explained to him where he can and cannot lie down (NOT on the tulips!!! Good Boy! under the rhododendron).

Today Pat came home and said, “Our house looks so pretty from the street – so much color”. It’s worth the work.

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.

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.

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

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.

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!!!

Pat and I have been doing research and have come up with 2 options that we hope are possibilities for me. They are both radiation based, but much different than the type broad scope radiation I had 8 years ago. One is cyber knife (available at Beth Israel in Boston) and the other is proton beam (available at Mass General). They are specialized techniques and are used on isolated single tumors, which we believe my latest recurrence can be classified as. There are side effects and we are not certain if either technique has ever been used on the bladder, but I’m hoping someone is willing to give it a try. We are still in the very early stages of research and will be counting on my current team of docs to steer me in the right direction. Typically radiation is a no-no for PMP, but I have it on good authority that cyber knife has been used, somewhat successfully on a few cases of PMP. Of course once we find out if this medically an option for me, we start the uphill battle of explaining to the insurance company why this “experimental procedure” will cost them less than another hospital stay.

More to follow…

Dr. Karian warned me ahead of time that he thought I would be going home with a catheter for a day or two. Not only did I prove him wrong, my bladder was fully functioning within minutes of the catheter removal, much to the surprise of the nurses. After my 3rd request for a bedpan, they decided I was good to go (home). So now I'm home, in the comfort of my own bathroom with some minor discomfort that should go away by the end of the week.

Apparently the biopsy was uneventful - Dr. Karian was able to remove most of the tumor from inside the bladder and send it for a pathology. Part of it had to remain as it is connected (which means it has penetrated the bladder wall) to the tumor on the outside of the bladder, which is connected to the abdominal wall. Not what we were hoping to find, but we got a better picture of the situation without a major surgery. Dr. Karian talked to me about the plan for the week, however he did this while I was in Recovery and of course I can't remember a thing. I'll be calling him Thursday or Friday for a re-cap.

Thank you all for your prayers and well wishes. I am sure they played a part in my quick recovery and release from the hospital on Monday.

More to come.