I Have Only 40 Years to Live

More time has passed and some reflection. I am realizing that I am better at denial than I thought (wow, I need to tweet that gem!) and my family is too.

I’ve been blogging in my mind, but neglecting to type it for a while. It seems like I’ve started five or six posts in my head. Now collecting notes from several places and combining drafts, so this will be disjointed.

On October 8th I had my follow-up Cystoscopy with my OHSU doctor. I’m lying on the table feet in stirrups and waiting for the straight metal rod that the Doctor used for my first cystoscopy. My new doctor picks up a bendy thin plastic tube. “You have a flexible scope?” I asked, shocked. “Sure, they haven’t use those straight solid rods for nearly 20 years.” I suddenly felt like my previous doctor was Theodoric of York and now I was living the future. I still can’t get over the dramatic difference in the two tools. Well, I hardly felt the cystoscope. And rather than “just lie there” as my previous doctor offered calmingly, this doctor let me sit up and watch the whole thing on the widescreen. We found a tiny “growth” 1-2 mm and I watched him burn it off. It wasn’t cancer. Cool.

We decided to start BCG again for 3 sessions as a prophylactic to keep the tissue clean. I’m a little weary of the process, but having had a good checkup I’m pretty optimistic and willing to do what they suggest.

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Paperwork:  So I got good news in July and began the battle of faxes to get back to flying in August. The FAA had required that I submit everything to the Seattle office and they would issue my medical (a required document which must be on hand to use my pilot license) and collecting this paper stack took 3-4 days of calling here and there to assure that faxes were both sent and received. Very exasperating. Then the Aviation Doctor had to prepare the letters and make sure all the sFAA’ questions were answered.

Some wonderful people really helped speed the process and it all worked out really well. I returned to the air in early September after qualifying in the simulator in August. Now, I’m flying half the month and in the office the other half finishing projects. It’s so nice to fly again.

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From June:  I was reminded today that I haven’t posted for a while. I replied that nothing was going on to type about. But that’s not quite true. I’m going to see the doctor for my pre-op check and update. There was a very quiet time, both on the blog and in my cancer life between the last treatment and the pre-op meeting last week. I really switched off the cancer thoughts and just did stuff. This post from Dana Jennings really hit home. It was weird when the treatment stopped. What a relief, but what am I doing?

http://www.nytimes.com/2009/06/30/health/30case.html?_r=1&ref=health

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So what do I make of these next 40 years? I just turned 49 and there’s a 50 staring me in the face. 50! I try to focus into the future more as I write and as I think. What do I do now? I never had the “you have 6-months to live” declaration; so now I am feeling like there is a better than 50/50 chance this will be an “episode” in my life rather than its definition.

And it’s not really over anyway. Yesterday was my second “prophylactic treatment” with more BCG and it kicked my ass again. I had flu symptoms for about 8 hours, and went to be feeling awful, then awoke just fine this morning Also, I’m back to peeing pain with globs of blood and debris coming out with the urine and such. Great fun. I go back in in a week for the last one, and then nothing until January. That seems pretty soon, doesn’t it?

It’s really hard to get through a day without thinking about my urinary system somehow.

I’ll try to be better posting and avoid such omnibus blasts, but it’s complicated.

More later

Welcome Good News

Just got a call from Mark the Urology Nurse. No Cancer found!
More later.
Need a treat!

The Last Few Weeks

It’s really been a sporadic blog and I’m sorry to anybody who wanted daily updates. The funny thing is, I really stopped being a Cancer Patient for about 6 weeks. The brain has a big Denial Switch that it throws whenever possible, and since there were  no symptoms and no appointments, I truely went for days without thinking about cancer in that way. Sure I knew I had cancer. It’s on my sleeve as a yellow bracelet, but all the fear and obsession went away.

Then there was the pre-op meeting with the Doctor. He asked about the treatments and was disappointed that I hadn’t gotten sicker from the BCG. And I knew that I was getting a more thorough follow-up–full resection vs, cytoscope looksie–than others do but didn’t know if I should panic or if it was just because I was a new patient to this Doctor.

Now, even though I’m in limbo again, and I’m back in the patient role, I’m more relaxed. Although I was supposed to be visualizing butterflies and cancer leaving my body, what took over my mind, in the week between the pre-op and operation, was a suspicion that something growing inside me again–tumors returning. I would see things in my pee; I decided that some diarrhea was Cancer-related (Bad Cheese) and I fell back into catastrophizing things. Once the Doctor said didn’t find any tumors, all those fears are swept away.

We still await the biopsy and possible other news there. And it really hurts when I pee. The Bladder Spasms are awful.

More later.

Second Surgery Today

Hey all,

I’ll be posting more about the past weeks later today or tomorrow, but for the moment, I am out of surgery and resting at home after my second bladder resection. The Doctor put me out and went back in the bladder to take biopsies and look around. He briefed my wife that there was some scaring but no tumors or trouble areas visible in my bladder, although we need to await the pathology report in 4-5 days.

No catheter this time, but it hurts like razors to pee. And I have to drink a gallon a day of water to flush it all out.

It took until about two hours after surgery for the results to register in my foggy brain, but I am happy and tired. Thanks for all your good thoughts.

More later.

Last Treatment today – Surgery in July

Had my last BCG today and it went fine. I just awoke from the weekly nap that follows these treatments. I’m not sure whether it’s the BCG or the no AM coffee that triggers the exhaustion, but a nap really helps. 

Both my nurses offered well wishes and it was strange leaving my little BCG cafe today. I’ll be back for follow-up infusions in 4-6 months, but life gets really simple for 6 weeks. 

It’s just waiting. 

On July 8th, I go into surgery again (under general)  for a resection (biopsy) to verify the cancer is gone. If it is, great. We wait a few months, and check again, and again, and again….

If it isn’t gone, well, no one has really talked about that yet–and I haven’t asked. The “think positive” and “fight it” process leans perilously close to denial sometimes, but I still subscribe. So this becomes a 6 week vacation from Cancer thoughts.

I wish. I will be chatting with various Doctors and the FAA to keep that process rolling. and I will be worrying that things are growing. I can’t help it. 

My new shiny will arrived in the mail yesterday to be completed and we met with the financial guy last week and he suggests that all is set up well just in case. 

Now it’s bedtime again, so I’ll type more tomorrow.

Another Week has Flown

Forgive the lack of typing. It’s for the best reason, as the last week’s treatment had almost no bad effect and there’s little news. 

When I dragged in to OHSU last Friday and complained to my nurse about all the symptoms I had endured for 4-5 days. He asked a little further and declared “I think you had the flu.” He expects it was brought on and/or exacerbated by the BCG. So, though we did the same treatment on Friday, with just a nap on Friday and Saturday and some Advil, I survived just fine. 

I do expect the symptoms to worsen as the cumulative effects catch up with me, but all is well for now. 

Other than that, I’ve settled into the routine, and as there’s nothing to “do” for 9 more weeks. I have told more folks at work and elsewhere and it has flavored the “How are you doing?” question. People now pause and drop their voices a little, they really want to know. It’s not a negative thing, just interesting how people ask more politely when they expect bad news.  

I’ll post again tomorrow after treatment #4. Looking forward to the end.

My Body Doesn’t Like TB

OK, now it’s hitting me, this is serious medicine. It’s Sunday and I still feel flu-ish. The symptoms hit Friday afternoon and then went away that evening until Saturday AM and pretty much killed Saturday with napping and misery.

Today, I feel better, but still have a sore throat and some weakness. Bleah. 

I figured since last treatment was a non-event, it would stay that way, but there’s a cumulative effect of course, and my body is unhappy with the invaders. I had all-day plans for the whole weekend, and now am just getting energy for  the sit and type process. 

I’ll make fewer plans for the following treatment cycles. 

Here’s more on BCG if you want to know, and Bladder Cancer in general (Another new web discovery)

http://blcwebcafe.org/content/view/109/119/lang,english/

 

On the upside, I’m peeing pain-free. It was that way the day before this last treatment, and then some pain returned following the catheterization, but I’m back to painless elimination. Small pleasures. And the removal of the bi-hourly reminder that I have Cancer. I still don’t go too long without thinking about it, but it’s not driven by the very organ. 

Blogging helps too. 

More Later.

Holding it Again

This time I’m off to lunch with my wife and feeling great. I took 3 Advil this AM and was better prepared. The catheter was more painful, different nurse, but all is good. 

Sorry this sounds like a twitter post. I’ll type more later.

Peeing with the Lights On

For the rest of my life, I won’t trust my body. A podcast I listened to last week described the aging process as “the body making mistakes, and those mistakes finally overwhelming us.” Cancer is a big mistake, and it’s starting to make me very  suspicious. 

At the same time, I’m ever more dedicated to getting healthy in ways I can control. I bought new running shoes last weekend; I’ve always been semi-sedentary, and remained quite healthy despite, but I’m less likely to take that for granted these days. 

Also, I have been eating tons of fruit and veggies, with the cancer patient’s focus on Broccoli (which is getting written up everywhere (thanks, Trish)) and Apricot Pits (which kept a friend’s mother going after Bladder Cancer.) Huge thanks to my wonderful wife for keeping the larder stuffed with healthy options.  

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The treatment last Friday was a piece of cake. No real side effects, and I was able to hold it for the requsite 2 hours and follow the toilet regimen successfully. Same again this week, and on we go.

I still worry that something is growing in me somewhere and I think that this fear will haunt me the rest of my life. Such is cancer. You just can’t trust this shit.

The other weird thing is that nothing is wrong. 

I have absolutely zero symptoms of the cancer or the treatment and this came home hard last week.  I was seated at a concert behind another parent who is in a late-stage breast cancer battle (there is no way to write about this shit without military language) and couldn’t stop noticing the scarf, the emaciation, exhaustion, and empty dark eyes. Other cancer types really suck, and you suffer it all in public: chemo, radiation, and the constant illness that accompanies.

I get a tube poked in me in a nice private room and, later that day, I’m back to normal. Weird and unfair. It also seems to confuse some of my friends and supporters who want to have something to feel sorry for or to react to or to attach their worry to or…. I see them look at me and I say I’m feeling fine, but they don’t believe it. 

Not everyone. Most friends are keeping watch–a little different, but life goes on. We have stuff to do and lives to live. 

More later.

Moments of Shear Despair

Following the wonderful and semi-optimistic appointment two weeks ago and my first infusion with BCG, I am feeling better. I am doing something to fight the cancer. But I still have moments of shear despair and emptiness. They really are just moments and pass quickly, and they remind me of the beginning of fatherhood, when I briefly imagined losing my son somehow to death or monsters or any random boogie that plagues the new dad’s imagination. 

That it lasts for only seconds doesn’t reduce the devastating plunge my heart takes and the slow climb back to comfort. Looking at my 6-year-old can trigger it, or just a perfect sunrise. How many more…

I mentioned 40 years to live as I tried to remember I do have a death sentence, but it’s not unique. I also need to remember that I’m still in the woods and will be until the biopsy in 12 weeks–and then again until the following checkup, and then again….

So, I need to live with this live / die dichotomy without the bubbling optimism and plunges that the initial diagnosis bring. Give me some time on that.

Holding it

Live blogging the BCG treatment 30 minutes onto the first hour. The catheter was fine and the nurse is very nice. Lidocane is my best friend. They asked me to wait an hour to see how I react. I react by blogging, but fine otherwise. I really need coffee and food. But that will meet to wait. Asprin next time to asuage the caffeine withdrawal.

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Well, I forgot to click on post so it’s 5 hours later. All is well and I like having my own bathroom.
More later.

My Son

Strangely missing from this discussion is my wonderful boy. And there’s a really good reason–that I’m struggling with again today:  I really don’t want him to “fit in” here anywhere. He doesn’t deserve this stuff. 

I think my current status is:  ”You have 40 years to live.” and the biggest difference between 40 and 4 years to live is my son. I really want to get him safely to adulthood. (Not that that’s turning out to be even a little bit safe.) He currently understands that I was a little sick, and now I’m better, but he also sees that there’s a new job, and more Doctor visits, and I’m sure I’m different with him in ways I can neither see nor control. This blog is also personal and to that degree, it all about me. I’ve tried to keep the drama low and reduce household stress. But, you can’t fool a kid, and he is affected. But what more do I tell him? Nothing, except “I love you” as often as contextually possible.

Best Care, Anywhere

Yesterday was the 2nd opinion appointment at OHSU. I had been dreading it in a it’s good for you kind of way. I worried that seeking a higher level of care might well uncover a higher level of cancer.

Well, it was a wonderful visit. I seriously thought I was at Nordstrom. The receptionist was welcoming, the nurse and PA were both very kind and supportive and the Doctor was just what I wanted:  very straightforward and clear as he laid out the options and we plotted a course together. It was really all about me. 

He had reviewed all the stuff from the scans and the pathology report and we decided that there was really no need for a second resection. He suggested we wait one more week for the pain to go away and start BCG (Same chemical as before) for 6 weeks. (Here’s where it’s different) Then go six weeks waiting followed by a resection/biopsy to verify the effectiveness of the drug. This adds 6 weeks, but will leave me with assurance that it really worked.

He also plans further infusions 6 months apart for 3 weeks or so, just to keep up the fight. 

The plan sounds fine to me, and he seemed to think we had caught it early and well. He mentioned 70% success rate, but also that my “Red Spots” in the bladder had upped the likelihood of recurrence a bit

The exit was so nice. I wandered to the counter and discovered that not only were they ready to make the BCG appointments, but that she was canceling a pre-op appointment they made in case it had been a resection first. Kind of proactive. I asked about Fridays for BCG and she said they do them on Mondays. OK, I guess I can work that, but she said hang on, popped into the the office, returned and asked what time on Friday would be best for me? She had rearranged a nurse’s schedule to fit my needs. I like this place. Plus they have a Tram. 

 

Called the Urologist to cancel the BCG treatments, and that I had a new Doctor, left a message, and then received a call back 90 minutes later wondering if I would be there tomorrow for my treatment. 

They were very kind and it was hard to switch Doctors after he threatened and then saved my life (Stockholm Syndrome?) The receptionist even asked that I drop them a card to let them know how I am doing. They are near my Aeromedical Doctor, so I suspect I will drop by. That’s like me. 

So my first BCG is Friday the 27th. (I keep wanting to type BSG, because I want a small spaceship to go in there and kill off the Cylon cells.) Maybe this is the Healing Imagery I read about. 

I’m so grateful to my friends for slowing me down, and supporting the 2nd opinion plan. 

More later.

The Awkward Middle Part

I used to wonder how bloggers would go 3 days w/o posting, but now I’m impressed with the regularity that most manage. Sorry to be so scattershot. 

Well, today I got confirmation on the office job for the next 2-3 months and maybe beyond. Same salary, and 8-5, 4 days a week. So, it’s pretty ideal. Also, told a few more people. I’ve gotten to an awkward point in telling people and realizing that there are important people I have not told, so I need to make up a list soon to avoid embarrassment. 

For those reading who know me, pass it on if you feel compelled to. I’m not quite ready to wear the LiveStrong bracelet I bought 4 years ago, but I’m no longer hiding my disease. 

One week until the OHSU appt. That’s a midpoint too. 

Spoke to the Health Insurance dude today and everything is covered. I’m so thankful for Health Insurance, and realize how lucky I am. We need single-payer NOW. I can’t imagine what I would do if I were paying for this. 

Blood work:  $65.00, Imaging:  $2410.00, Radiology:  $499.00

Haven’t even seen any bills for surgery or the Clinic stuff. Yikes.

Denial is Lurking

Friday evening, I peed blood again and wisely decided to ignore it unless there was more on Saturday or Sunday. Well there wasn’t so I’ve decided I’m fine. My wife asked what my degree was in?
Partly, this avoidance is because I don’t want to deal with my old Doctor anymore. I’m focused on the new guy.

And, since there’s still pain when I pee, I can pretty confidently chalk it up to ongoing healing inside. 

Still, it shows me how much I want this all to just go away. I’ve reached to point that I don’t think about it for 2-3 hours, but the bladder will not be denied. I debate between waiting longer or peeing more often; either path hurts in different ways. And the pain is mostly just the reminder of Cancer.