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!!!