The things that were (previously) hard to talk about.
I've been putting this one off. Not sure why. I suppose I am still somewhat holding onto the past in that I don't really feel comfortable talking about myself or my feelings. And yet here I'm about to spill it all out in a public place, where anyone in the world can read it. A bit intimidating, to be sure. When people ask how things are going with me or how Billy Jo is, it was much easier to just usually say, "oh ok" or "depends on the day" and just leave it at that. I know people won't want to hear that, but it was very difficult to really say what I was feeling, or how she had been doing. And the task of having to say things over and over would just depress me even more. It would be exhausting...a fucking rodeo stomping elephant in the room. So I thought and so I kept quiet.
Turns out that this line of thinking over all the years would eventually catch up to me, and that pretty much happened last August/September. I was so focused on raising money for SU2C by riding across Iowa on my bike and completing it, that what should have happened sooner didn't really have a chance. We knew fairly early last year the tumors were growing again, we knew that as each day passed so did her pain, we knew that we were really getting to the point where options were going to become very limited.
Avoidance of chemotherapy was not possible. In 2004, halfway through six rounds of chemotherapy, the port where it is delivered got infected and almost killed her. She spent 10 days in the hospital and upon surviving told me and everyone that she would not be finishing chemo. I couldn't blame her - six cycles/rounds in 1999, six in 2001, six in 2002, six in 2003, and then three of six in 2004. What kind of life is it if you NEED to be poisoned every day to keep breathing? So her oncologist put her on a "fuck it" pill to hopefully slow down the growth. This gave her about 2.5 years where the numbers kept rising but there wasn't any quality of life issues. Then a tumor started to grow right on the sciatic nerve. By early 2008 it was clear surgery would be needed, followed by radiation. We tried a few things after that to avoid chemo but we knew we were out of options and that fucking chair was looming over her, and with it a decision whether or not to get back in it.
So the last week of July 2011 comes and I'm headed to the western end of Iowa, riding my bike back to the eastern end. It was a goal/experience I was very happy and proud to accomplish, but very very draining. It burnt me out on bicycling, because I knew what was right around the corner, and suddenly bicycling didn't matter. (I should add I went from 2001-2007 with only about 50 miles total on a bike. I started again in 2008.) The amount of emotions and tears I spilled at the finish in Davenport was something. I really rode the last six miles alone bawling like a baby... one, because I had actually finished the thing, and two, because we were going home to face hell. I rode once or twice in August, and chemo started in September. With it started my spiral downward. I'd drive 65 miles RT to work for 4-5 hours, leave at 9am, drive home, then take her to be poisoned for 4-6 hours at a place that required a 50 mile RT, including home in rush hour. This was M-F, every couple of weeks, ending on her 37th birthday. Riding my bike, eating healthy, facing my fears and problems...all of those no longer mattered. They mattered even less when we knew the cancer (that was getting it's ass kicked the first four rounds) picked itself off the mat for rounds 5 and 6,
So in the span of 12 months I gained 40 pounds, put a total of about 80 miles on my bicycle, slept whenever I could yet never felt refreshed, and kept going to the doctor to try and figure out what the hell was wrong with me - blood tests, sleep studies, everything. I also lost my ability to know when to cut off my drinking, something I was doing more and more often. There was no telling if that first beer would turn into 6 and a good time or 16 and magnifying my depression 100-fold.
In July 2012, after the updated PET-Scan results showed continued growth of all three tumors, the reality of the situation began to set in - after 17 years, this fucking miserable disease has her on the ropes. All conventional treatments are exhausted. Chemo is killing her faster than the cancer and it has shown to be near useless against the cancer now. She received full-dose radiation after 2008's surgery so that's out. She has had four major abdominal surgeries. Between those and the radiation, the amount of scar tissue in her abdomen is likely unbelievable. This means debulking surgeries are off the table as well - surgeons don't take those risks when they know the ting is going to come back (plus as you now know, it's inside L4 and therefore inoperable at that site). This is when I met the Social Worker in her Palliative Care doctor's office. One talk with her made me realize I could start opening up how I feel, and I have begun to do so, but again it depended on the day if you were going to get old Dave or "talk your ears off" Dave. There was no rhyme or reason for which one you were going to get.
I saw my doctor on 9/4. That was the 5th visit in a row my BP was high. My blood sugar was high-normal. I have never been heavier. I was always exhausted and all the anti-depressants in the world weren't doing shit. He basically told me I had 3 months to get my BP down or I'd be on meds. If I had another year like the past one I'd be type-2 diabetic by September 2013. He told me that I could help all my issues by simply giving a shit about myself again - count your calories and get back on the bike. BP, pre-diabetes, depression, energy levels, all improved by a simple change - care about yourself again.
So I started counting my calories and more importantly got back on my bike. I can't explain how much it helps me calm down and think things through. Other times I just shut my brain off and murder my legs. I almost immediately started feeling a bit better, and developed a gameplan for how I was going to deal with the future.
As you may know, in mid-August we went for another opinion on what to do, if anything, to try and stop this cancer. The doctor at the University of Chicago recommended trying Avastin, because a small study of eight women with the same rare form of cancer showed some promise. Not a guarantee by any means, but maybe extending life a year or two, if not more. Or maybe it does nothing. But this is quite literally :02 left on the clock Hail Mary pass time. We need a touchdown. There are no other things left to try, so we are happy those two seconds were left.
So I got back on my bike and decided how to be the strongest I can for me and for Billy Jo. I need to have optimism that Avastin will work, but I also cannot keep thinking that "everything will end up just fine", something I (and pretty much everyone who knows Billy Jo) takes for granted too much. You think "well she's kicked it's ass for 17 years, she can keep doing it." That's not how it always works. Now, if the tumors disappear and she lives to be 75 then I will be forever grateful, but if it doesn't work I (and ALL of us) need to be prepared for that as well.
So on my bike I starting planning for worst case scenario - we have a year or so left. I want to get her to Florida for an extended time (4 weeks or so) while she can still enjoy it. After that, by giving a shit about myself again I can better deal with things myself, therefore being as strong as I will need to be for her. I start to accept the fact that she may die. This is something I never really did, except in 1999, when there were so many unknowns. I'm not ready for it yet, but I refuse to be accelerating myself into the abyss waiting for it to happen. It's not fair to her, OR me.
Then last Wednesday night hits. And Thursday and Friday everyone is saying this thing better clear itself or she's going to need surgery - a very risky surgery - and it would delay Avastin by a long time. I had a complete breakdown Friday. Here I was, beginning the hardest journey to "strength" that I may ever experience, and even finally fucking ACCEPTING it, and suddenly that year or so might be a month or so. It was too much for me to accept on Friday. It took four Xanax to calm me down.
Saturday it began to look like the obstruction might clear itself and I calmed down a bit. Drove an hour home so I could ride my bike an hour. Drove an hour back with the bike in the back of the truck. The biking while she's been in there has helped me tremendously. It's like natural Xanax to me. I haven't had a Xanax since last Friday, although typing this over the past two hours might require one :)
Sunday night Billy Jo and I had a long talk about the future and what it will bring. It is relieving to finally talk about these things rather than ignore them - it will help us both in the long run. I want to take all her pain and cancer and everything for the rest of my life to give her a pain-free six months. Even if she had to die at the end of those six months. I just want her to remember and experience what pain-free feels like. But I know this can't happen so I am going to do everything in my power to be the strong husband I need to be. Her favorite saying is from Hope Floats...
"Beginnings are usually scary and endings are usually sad, but it's everything in between that makes it all worth living."
If you're still reading this, I thank you and apologize for the length. But I have to admit, it's better than "I'm ok." For you and for me.
I love you, Billy Jo