Shout Outs

In what is probably my last blog post for five or six days, let me start with a shout out to my friend Bruce for taking my 1978 Porsche 911SC out yesterday for a nice work out. With Terry busy running errands in our SAAB and walking the dog, our (mostly my) buggy has been neglected, and cars need to be driven from time to time.

I have to give myself a pat on the back for thinking of Bruce, a sports car owner and former professional driver (okay - cab, not race car, but still). So it was a win-win situation. He had a good time throwing my baby around some corners up in the hills, and bringing it up to some high speeds on the freeway.

He’ll be available again, though Terry, who can enjoy driving and drives well, seems fired up now herself after hearing Bruce’s description and my reaction to the outing.

Next, I want to give an even larger shout out (sorry, Bruce) to the late Lyndon Baines Johnson and the 89th Congress for creating Medicare. I could pontificate quite a bit about this topic, but let me give one example. 

When Terry was diagnosed with uterine cancer four years ago, we were under 65 and still with her office’s health plan. It was a good plan, but was organized like others - i.e. you had to keep everything within your group.

Now in the last few decades more and more surgeons are using scopes to do operations. Instead of slicing you open they cut various small holes in you, stick in an LED light and specially made skinny little instruments on skinny little arms. Then, with their eyes glued to a high-def t.v. screen rather than looking down at the patient, they do their thing. To remove items larger than the holes (e.g. a uterus), they just slice em up and suck em out.

Unfortunately, no surgeon in Terry’s group plan could do this type of laparoscopic surgery. The plan would pay for a traditional operation, but wouldn't pay the laparoscopic surgeon we tracked down because she wasn't in the group. We ended up paying out of pocket for the operation. Our plan did pay for Terry's one night hospital stay (as opposed to five nights required after traditional surgery). This wouldn’t have been an issue with Medicare, so thanks y'all. 

So I'm ready to check in tomorrow, fantasizing about an i.v. with a steady supply of fluids, anti-nausea meds, and pain killers, and avoiding thinking about the bigger picture (i.e. what are my chances). Terry will be emailing with updates and I hope and expect to be online here again before too long.

Hair Today, Gone by Afternoon

When my wife had breast cancer many years ago, she went out to a hair stylist just before her chemo treatments were going to start. I thought she was planning to get a very short haircut so she wouldn’t have so much to lose. She came back with a beautiful ‘do that was not really that short. I either had misunderstood or she had changed her mind.

So, it was particularly sad for me to watch her hair come out in handfuls when she went to brush it a few weeks later. 

At that point I decided I would get a buzz cut if I was ever in the same situation. So, that was my agenda for today. I went to a cheap place in the neighborhood rather than to my  famous top of the line downtown S.F. stylist (one of our indulgences). But even bargain stylists want to style, so she talked me into doing something that wasn’t completely boring.

So, I am currently rocking a ‘do that is about 1/8 inch on the the sides and an inch on top, spiked up with a little styling gel. It’s a nice compromise, and should be easy to adjust (i.e. shave) as my hair starts to fall out.

After that my wife and I decided I should indulge myself with a new 64 GB iPad mini which we went down and bought. Tomorrow’s agenda - fill that sucker up with movies and t.v. shows for the hospital stay. Tonight - lots of rest. A hair cut and an errand are about the extent of my abilities at this point.

Diagnosis - Good News / Bad News

I have Diffused Large B Cell Lymphoma, evidently the most common type of lymphoma. The good news is that it's treatable. This is an issue, because some lymphomas aren't. My late mother-in-law was diagnosed with one of these types and passed away within six months. Things look much brighter for me. Also in the good news department, Dr. K said I was in generally very good shape for an American 68 year old, which makes a big difference.

The bad news is that my lymphoma is aggressive. Doctor said frankly that I'd be dead in a few months without treatment. The lymphoma hasn't been staged yet, but will probably be stage 2 or stage 4 depending upon what is going on with nodules in my lung (which I think I explained a bit about in an earlier blog post).

Monday morning I go into the hospital. They will put a port in my chest so they can input chemo directly into a major artery near my heart. I will have three tests that day or on Tuesday - a PET CT scan to show where cancer may have spread, a bone marrow biopsy so see if cancer is there, and a bronchoscopy to get the lung issue sorted out. Along with the bronchoscopy, I will have a consultation with an infectious disease specialist.

Wednesday I should start chemo. The exact chemical or chemicals will depend on the results of the tests (especially the bronchoscopy). Dr. K said he might start me on something even before all the results are in. The first treatments will be so intense that he will do them right in the hospital. There is also a possibility I will be walking around at home later with a little tank of something pumping into me. I'll know more after the tests.

So, I'm relieved to know that it is treatable and the momentum has begun. When the results are in I'll talk to Dr. K about my chances of recovering and ask and how long before I am A) Feeling Better and B) Cured or well on that road.

I have a couple of more days at home, so I'll post again most likely - something rambling and perhaps funny. After that blog posts might be few and far between for a week or so.

Living With Pain

Okay, for those of you who didn't bail out after reading the title, here goes -

Ever since I got a pinched nerve in my neck many years ago, I’ve been living with pain. It varies from mild to intense, and I’ve learned to live with it. Number one adjustment is - accept that it’s there and avoid thoughts of, “Oh woe is me”. 

With this recent onset of lymphoma my pain’s gotten a bit worse as my stomach is joining the “party”. One new problem is that for some reason a nice long walk has often been an excellent remedy for my pinched nerve pain. Maybe it loosens up the muscles. Now this option is gone because around the block is about the best I can do. Energy permitting, getting engaged with something (guitar, computer, book, t.v.) continues to be a good remedy, but I have to be very careful to get engaged without tensing up my shoulders etc. in any way. I have an electric massage machine that helps sometimes. In any event, I’m hanging in there and am not taking hydrocodone every day, though knowing I have some helps on days when I don’t go for it. Any drug also works better if you use it every third day or so instead of every day.

As many of you have probably learned, if you’re tired enough, you can fall asleep when you’re in a pretty good deal of pain. You have to accept that it’s there and then try to focus on something engaging (yeah, and maybe take some aspirin and a diazepam). Personally, I will arrange guitar tunes, mentally diagram football plays, or replay scenes from movies or sporting events (last pitch of the World Series - letter high strike on the inside after five or six sliders just on or off the plate low and outside. I called it. You can ask my wife). In my younger days I would go for sex fantasies to go to sleep, but around age 60, this option seemed to take too much effort.

Once asleep, dreaming can be quite an experience. I’ve never had a dream (at least that I can remember) where I’m actually fighting the pain with a sword or fists, but I have had ones where I’m sparring with the pain in a spy versus spy kind of strategic battle. More often, though, the pain will take the form of  a suitcase or backpack I’m lugging around. Or it will be a nagging reminder of a bill I forgot to pay or some errand I have to attend to. I’ll be playing out my dream telling myself, “okay there is this annoying burden, but I’ll deal with it later.”

My Upcoming Big Decision

It felt good Monday to do some stuff. I got on the phone and made a couple of appointments and even ventured out of the house to see an ENT doctor to have a drainage tube put in my eardrum. The ear is wanting to clear, but is still stopped up after 27 hours. Part of the problem, I suspect, is that I’m not moving around much. It feels better than it did, though. I’ll feel a gurgle and a brief drainage, but it won’t quite clear. Also it’s starting to itch a little bit rather than just throb, which is good.

As for the appointments I made for Friday - I’ve got to make a decision about an oncologist. 

The first guy - Dr. Ostap G. Melnyk, MD | Alta Bates Summit - is someone who has worked with my surgeon quite a bit. He is extremely eager. In fact, he got in touch with me at the hospital even before my biopsy results had come it. Online research reveals that he is very much into clinical trials, so we suspect he’s always searching for patients. This can be good and bad, I guess. The good would be, as I see it, that he is really pulling for good results and is on top of the newest technologies. The bad would be that he probably has tons a patients with little time for any single one, and he might be wedded to a certain formula because that’s what he’s researching. 

The next guy - Dr. Oleg I. Krijanovski, MD, PhD | Alta Bates Summit - is appealing because he works out of Alta Bates Cancer Center - http://www.altabatessummit.org/clinical/cccintro.html - This is where Terry has gone twice. It’s a nice peaceful place that has a full time nutritionist, a meditation room, yoga classes, an acupuncturist etc. It’s also very close to our house. It took us a few days to find him, because we wanted to get a good recommendation from our primary care physician, who had to track down a busy doctor and get his opinion.

I meet with both of them on Friday. I hope I don’t end up not feeling sympatico with either one. I think things will also depend on how complicated my situation is. I believe lymphomas can vary quite a bit. It will be interesting to see how close their recommendations are.

My primary care physician suggested both will want me to have a PET Scan. I was trying to figure out if I'd want to go with our doggie Koz-B or our can Judy, but learned it's a different kind of deal.

In the meantime  no word about the more detailed analysis of my lymphoma, so I'm in waiting mode. Within there I continue to hang. My energy level is low, but I have definitely learned how to eat in my current condition. 

I welcome comments via email or on the blog here about my oncologist choice. 

Family and Friends

Today I’m going to give a shout out to my hospital visitors and family. First hospital visitors (Alta Bates visiting hours = 24/7. Major kudos) -

My Giants ticket partner and I were into a baseball conversation within thirty seconds of his arrival. We kept things rolling with a discussion of recent books read or movies watched. In a great coincidence he was also able to give me a ride home from the hospital.

Another hospital visitor is a favorite of mine because she laughs at pretty much any stupid pun or joke I manage. That’s hard to beat (and perhaps, some might say, hard to believe). And kudos to her boyfriend who came along even though we’ve only met twice.

Another guest happens to be pregnant, which immediately opened up a nice avenue of conversation along with the books, movies, and work drama verbiage. I’m looking forward to watching that midsection grow.

My wife would just come in, hand over some good, easy to digest food (hospital food = yuk), pull out her knitting, and give detailed reports on our dog Koz-B and cat Judy. Otherwise, we’d act like we were at home, except for the part where you yell, “Honey, where’s the . . . oh, here it is. Never mind.”

My family didn’t know I was in the hospital, but when I got my preliminary diagnosis I emailed the word to them. My sister was the first to get through to me by phone. She related a ten minute story about a friend of hers who had lymphoma, went through chemo, never missed a day of work and is now cured. It was great to hear and incredibly detailed, as is her habit (nephew and niece, you know what I’m talking about). Thank you, Sis.

Her two kids, my nephew and niece, also called with best wishes, though both are extremely busy. In fact, it might not be an exaggeration to say that this is the most important couple of weeks for my niece since the birth of her last child.

From Terry’s side of the family I got a nice phone call from my niece. We had a lot to talk about because she had some health problems as a teenager that had her in and out of the hospital a lot. 

Her mom, my sister-in-law, has got some blessing meditations and healing circles going on for me, and I’m reaching out for those good vibes.

Finally, I want to share a silly thought that runs through my head these days. My late mother, Scooter, would rarely miss a chance to repeat one of her favorite jokes. If you’d say, “I’ll be right back, I have to go to the bathroom”, she’d say, “Go for me too, will you. I’m too lazy to get up right now.” Well, I’m getting a lot of “please let me know if there’s anything I can do” messages these days. “Sure,” I’m thinking, “Could you take one of my chemo treatments for me?” Ha ha. (BTW - I’ve wondered for years if Captain Kirk ever contacted Scotty asking, “Hey Scotty. I’m really busy right now. Can you beam the contents of my bladder out into space?”)

You're Either in Charge or you Aren't

One of my favorite movies is Akira Kurosawa’s “Ran”, which many of you know was based on Shakespeare’s “King Lear”. I like "Ran" so much, I’ve checked out a few movie versions of "Kind Lear" and read the play. 

In the opening scene, Lear, speaking in the royal first person plural, decides it’s time “to shake all cares and business from our age. Conferring them on younger strengths” and “divest us both of rule, interest of territory, cares of state”. Okay, that’s cool, he’s tired and ready to retire. But then, towards the end of the scene he adds, “Only we still retain the name, and all the additions to a king.”

Well, of course, things don’t work out that way, as he learns the hard way. The lesson, as I see it is this - You’re either in charge are you aren’t. You’ve got the power or you don’t.

So, what does this have to do with this blog? Well, I’m going to painfully stretch an analogy and equate handing over the responsibility of running certain errands to handing over the rule of a kingdom. 

In our 30 years of marriage we’ve scientifically or just organically learned to divide up the responsibilities. One of my tasks has been renewing our car registrations (For many years just one car, from ’98 on, two cars). This has become a simple task in the internet era. The only time one needs to get off of one’s posterior is when a smog check is required, as it was this go round on our 2001 SAAB. I misplaced the paperwork and suddenly realized we only had a month to go. This was just as I was starting to feel pretty funky. So, I started pestering Terry about getting it done. Around March 1 she told me she’d do it on Thursday, March 7. (I give myself a C+ on the not continuing to “remind” - i.e. nag - her while waiting for that date to arrive). 

She came downstairs March 7 after walking the dog. She had a sheet of paper in her hand. She announced she was off to get the smog check. “Just a minute,” I said, and went to the computer to research what might be the best and closest place to get it done. I peeked out of the corner of my eye and realized I was getting “the look.” Duh! Of course she had already done all this, and was holding a web special $20 off coupon. Oooops. Sorry. The lesson, my friends and family, you’re in charge or you’re not. When you’re not, take advantage of it. Kick back. Chill. Noodle on guitar. Listen to music. Pontificate on Facebook or your blog. Take a nap.

Looking Forward to Chemo?!

Can I possibly be looking forward to Chemo? Well, yeah. Mainly because the chemo should start to reduce the mass in my stomach immediately, since it is made up of the exact type of cells the chemo will be attacking. 

Other positive thoughts - 

Doctors are continually improving the chemo drugs and the counter drugs to maximize kill power and minimize nausea. The Ms noticed a huge difference in how she felt the first time v. the second time going through chemo. People who went through chemo back in the 70s remember feeling really lousy almost all the time. Not so much now. Since I’m already feeling pretty funky, I don’t anticipate a huge change. We’ll see.

The disease of lymphoma itself can make chemo feel less creepy psychologically. What I mean is - most cancer patients have a particular body part that has cancer. It can be frustrating to these folks to think of weird chemicals going through their whole bodies just so they can attack the cancer cells in the one small area. In my case, chemo going through the whole body is a good thing, because your lymph system goes through your whole body. I am envisioning myself lying on the couch, all hooked up, and thinking, “go, you little muthafuggers, kill those cells.”

Wife's History - Age - Background Annoyances - Funny Hospital Story

It helps me A LOT that my wife has gone through two cancers. Obviously, I would prefer that it had never happened, but the fact that it did makes my situation seem more routine. One thing, we both noticed was how much better treatment had become the second time around. The "cocktail" of chemicals had become more sophisticated and the entire environment of the cancer center had improved.

This past history also reinforces the "this too shall pass" mantra most of us get working on when we have to go through a tough period of time, like, say, a root canal appointment.

Age plays such a factor as well. When you're 68, as I am, you figure you've got 10 to 20 more years, so the fear that the cancer may return down the line isn't so frightening. Five years could easily be half your life. Another nice thing, the older you are the more slowly cells reproduce in general, so cancers grow more slowly.

I've got a couple of peripheral issues that are annoying.

First - I have a pinched nerve in my neck that was diagnosed about 15 years ago, but I think goes back even further. I've learned to live with it, but it gives me constant pain that radiates out from my neck in all directions. In relation to my current situation it causes confusion because I'm not always sure where it hurts. This sounds like is should be obvious, but with the pain from my neck radiating into my jaw, head and stomach, I'm not sure if it's my stomach or pinched nerve that is acting up.

Second - driving over The Grapevine out of L.A. in January my right ear filled up and it won't drain properly. I've had it checked out and it's not infected, but it hurts, sometimes quite a bit, exacerbated by the pain from my pinched nerve. None of my doctors think it's related to my lymphoma, but in my uneducated mind I'm thinking, "Partially blocked intestine, partially blocked eustachian tube - sounds related to me".

I'll close this entry with an amusing story. When I spent three nights in the hospital last week the doctors authorized various meds for me. They were pretty generous - morphine (very weak, so I didn't get to feel high), hydro-codone, diazepam, and lorazepam. My last night I told the nurse, "My pain level is pretty mild tonight, I think I'll be okay with a couple of Tylenol." You guessed it - not on the list. So I took a half dose of hydro-codone.

Background and Intro to Blog

This is for family and close friends. A possibly boring, detailed account of my trip with lymphoma. I'll begin with history to bring us up to this point.

Last November at my annual checkup we discovered that my stomach was painful to touch in the center. I felt okay though. I had my normal appetite, and had been eating Indian, Mexican and other cuisines with no digestive problems beyond the usual occasional minor stuff we all have. My primary care doc sent me to the surgeon who had fixed my inguinal hernia, thinking I might have the other type of hernia. He said I didn’t and recommended a CT Scan. I shined it on, thinking “I feel okay and who needs to drink radioactive chemicals.”

In mid to late December I began to have extreme diarrhea - total liquid. It was easily controllable with Pepto and I still felt fine and had normal appetite and no stomach upset. I was getting worried, though. I called my doctor and we did a test for intestinal parasites. At this same time I got advice from my Osteopath (for pinched nerve) on changing my diet. This worked well. I was able to go off Pepto and continue to have okay poops. The test, which took two long weeks, came back negative. I was feeling pretty happy and thought I might be able to ease back onto my regular diet. My stomach was still sensitive, though.

Then around February 20 I started too feel really bad. The diarrhea came back. I was feeling nauseous and weak. On the 23rd I threw up a few times and my energy level was even lower. I went to see my doctor who set me up for a CT scan - STAT - which revealed a large “mass” partially blocking my intestine. Solid matter could not pass, but there was enough of an opening for liquid to get through.

I was feeling worse, throwing up a bit. I went back to my surgeon who sent me to the hospital on Thursday, Feb 28. The mass was biopsied on Saturday, March 2. In the meantime, some time on the IV got me back on track and I was able to leave the hospital on Sunday. Today (March 6) I learned I have lymphoma. I’ll know exactly what kind in another week. No matter what kind, I’ll be getting chemotherapy. 

In the meantime I’m doing okay at home, watching what I eat and eating very slowly.

I’ll be posting about how I’m feeling mentally in the next entry.