It's Time: We Have a Date

I probably should have sat down to write this note on Wednesday right after I met with the surgeon when all the newest information was fresh in my head and the thoughts swirling in my head. But I realized I needed a little time to process everything and come to terms with it all. It’s time. The next phase we’ve talked about as a possibility is really here. Time to get gutted. June 1.

Filling the Void

Since getting the CT scan, viewing it myself and hearing my Oncologist’s take on the radiology report, I’ve been waiting to hear from the Surgical Oncologist. In the end it’s her professional take on my situation that has the most weight in helping make a decision of what’s next. It seemed every day should have been when I’d hear an update, but another day would pass with no word.

I usually feel the not knowing is the hardest aspect of all this. The unknown leaves me to work through all the possible scenarios on my own to fill in the empty space. I’d seen the scan and knew it wasn’t good. Remember when I wrote awhile back “I’ve got 4 months” knowing that we were making a last ditch effort to put off surgery in the interest of gaining a little benefit? With my increase in symptoms I was pretty confident we had used up that time and not gotten what we had hoped. Aside from that, after all my previous healthy efforts and diligently taking the Gleevec for a year only to see my scan in January not display the results I’d hoped, I’ve gotten a bit more conservative in fostering elevated hopes and expectations with this cancer.

In my mind I saw a few different scenarios playing out. First, the surgeon could say we’ve seen some marginal improvement in areas that I didn’t notice myself in the scan and it’s worth continuing to try. Second, and more likely, I expected her to say we are ready for surgery. Third, and this was the pessimist in my head, the surgeon would say we’d taken this time and unfortunately things got so much worse that she no longer recommends surgery because of the impact and damage it will cause.

Yeah, it’s easy to wander into al the “what ifs” when you’ve got no clear direction. So we just kept waiting for the call.

The Surgeon’s Meeting

Tuesday I got the call from the surgeon’s office to set an appointment. They said they could squeeze me in Thursday, and actually an atypical opening was available the next day. “I’ll take it” I said, not wanting to linger in the unknown any longer. So 1pm on Wednesday I’d now know more.

With the last minute scheduling of the appointment, Heather wasn’t able to join me as she prefers to with these big meetings, so I headed up alone to meet with Dr. Tamara Bowles once again. I like her. She’s straightforward, answers any question I have without hesitation, and is willing to speculate when asked because I let her know I’m asking for an educated guess at times.

We reviewed the latest scan first, with Dr. Bowles pointing out all the areas of new and increased growth which was disappointing. We had hoped there would be some lingering benefit from the Gleevec, but essentially the tumor mass(es) have sidestepped the drug. In essence the portions that have mutated have grown and and appear to be growing quicker. The drug is no longer an effective treatment option for me, and unfortunately it is the only tier 1 option available for my rare form of Sarcoma.

Next we discussed my increasing symptoms, primarily the frequent abdominal pain that has returned. I expressed that it was often after meals of any size, and that I felt the tumor was occupying more space and physically infringing on my digestive tract to the point of inhibiting food to easily pass through. She responded “That’s exactly what I think is happening.” We looked again and some of the size and placement of the primary tumor mass and the core message was “It’s time.”

There was no longer any time to wait. We need to get in an “debulk" the tumor she said. Essentially she is going to remove every bit of tumor she can find to relieve the physicality of it in my abdomen and resent the clock on it’s spread throughout my system. It’s time for my oversized c-section and birth this alien. It’s going to be a biggie too.

As I’ve mentioned before, there’s going to be massive impact with plenty of other organ tissue removed along with the tumor. Only so much can be known from the fuzzy scans, so I have to hear the worst case scenarios and sign the waiver knowing that much may change once she opens me up and sees the problems first hand. On the upside of the meeting Dr. Bowles expressed some renewed optimism at possibly saving some of my stomach. She described how if there was some good tissue just below the esophagus that was critical to saving a portion of the stomach instead of taking it all. This was new to me. I’d much rather have as I’ve put it an involuntary gastric bypass than a complete stomach removal.

For sure I am losing the spleen and a portion of the stomach at least, parts of my diaphragm, small intestines, large intestine, kidney and liver. There doesn’t appear to be any presence inside these organs other than the stomach, which is very good. Still, this is going to hurt. A lot. I am expected to be in recovery for 6 weeks. One week in the hospital, then many weeks on the mend at home.

I’m really, really not looking forward to this.

The Good with the Bad

So what does this all mean? First and most important, I feel grateful we have this next step available. If I wasn’t to have surgery now, the pain would only increase and at a rapidly accelerated rate. I can continue to try and battle it with good diet and fitness while searching for and trying other alternative treatments. But given the increase growth, my time available for that effort would be limited. So this surgery buys me time.

Dr. Bowles stressed that I understand this is not a “curative” procedure. We are removing as much cancer as she can find, but it is not going to remove it all. I’ll still have cancer. I’ll go back on a second tier drug post surgery in the hopes that it helps in some fashion. This buys some time to keep searching and hoping for a clinical trial for which I qualify. This allows me to try anything new or different I choose to engage in the fight.

I asked directly for her educated guess on what kind of time this buys me. Her response was sobering. Two years she expects to see new tumor growth return.

When I first heard her say that I heard it as just two years. I’ve got two years. But there is more hope than that. I asked “Two years until I’m back to where I’m at now with big tumors?” She said no, hopefully not. We will be scanning frequently of course and seeking to identify and monitor new growth much earlier in the process. But when we see the growths, whether they can be addressed with additional surgery will completely depend on where they occur. Around or in organs makes a huge difference.

She highlighted that because the tumor near my liver was just that, NEAR my liver and not IN my liver was a big difference. We’d be having a different conversation she said if it was in my liver. She also emphasized my good health played a big factor in my eligibility for the surgery. She complimented me on looking much better than most of her patients at this stage of cancer, and having that good health translated to a confidence that I could recover from this difficult surgery and continue to fight.

I’ll take it.

Taking It All In

I’ve been asked a myriad of questions by friends and family I’ve talked to about this since Wednesday. I fully intended to write about it sooner, but having a few days to explain it repeatedly to others was good for me to work through the details and what it all means. Most often asked is “how are you feeling right now” both in terms of pain and what do I think about this surgery.

Frankly, it’s scary.

It’s going to hurt. It’s going to be a long and painful recovery. There is still plenty unknown I have to hope will turn out ok when they do the procedure and that life post-recovery will look good. It’s not a cure, so is all the pain and recovery going to be worth it? What happens after all this and for how long?

Those are just a few of the many questions that run through my mind. It’s not all motivational speeches running through my head. But, it buys me time and hopefully some good quality of life during that time.

Time to make memories with those I love. Time to keep fighting for better answers and perhaps keeping the cancer at bay for much longer. Time to keep providing for my family and being present while I do it. Time to experience life and all it’s goodness. Time to do…more.

Just after the surgeon’s meeting I met with a friend for a quick smoothie and a chat, and among other things was asked “Are you angry?” My immediate and honest answer was no, I’m not angry. I don’t wish for this situation, but it’s here and I just have to do my best I can with it. I wish I knew the cause or source of this cancer so I could change it. So post surgery I could make that change and put off any tumor regrowth for a long, long time.

I responded to another friend this week about all this and said this does feel like my best option at this point. Not excited or happy about it, but willing to take the path that seems right. My biggest impression is I need to work hard to be ready, work harder to recover, then live life to its fullest.

Choosing To Live, Love and Thrive

So now, we have a date. Less than four weeks now. There’s lots to do between now and then to be ready, and perhaps some of it will get done and some will not. But when June 1 arrives, we’ll put my life in the hands of those trained to do their job and trust in their skill, knowledge and experience to do what is best for me right now. Then we’ll take it from there.

I’m sure some have tired of this phrase, but it’s my mantra. It’s what I repeat to myself in the lowest moments of self-pity and my moments of peace and enjoyment. In my two hour bicycle ride yesterday up the canyon I looked around taking it all in and repeated I choose to live. I choose to experience the life I have, whatever length that may be. As we had celebration with neighbors and friends last night for Spencer and Taylor, I reminded myself that this is choosing to live. All of this matters.

I hope you’ll continue to connect with this message and make that choice to live, love and thrive in your own lives on your own. I am planning to share a little more about how you can share in this message in the next few days. Stay tuned.