starting over

It's been almost six months since I last posted anything here, and that was an entry re-directing my regular readers to a journal I'm keeping about my wild ride through Medical Wonderland.

Does anybody keep blogs any more, or are we all using social media like Facebook? I don't know, but I think I'll resurrect this to give me a place to rant and rave about issues other than my medical situation and see who notices. I'll need to stay away from politics, though, to avoid giving myself a heart attack. At the moment, I'm looking forward to a trip to Boston to help celebrate a grandson's first birthday and our anniversary. Daughter Megan is also celebrating a birthday but she's in Seattle and we'll have to use Skype or extrasensory perception to get her involved in our party.

It's a sad commentary on the State of Florida that none of our kids are likely to move back to Florida, and our governor and state legislature are doing their best to make it all even worse. Oops, there I go on a political topic. Ugh. I can feel the bad taste in my mouth already. It's time to think positive thoughts, like maybe the prospect of seeing FSU win the NCAA basketball tournament. FSU went to the finals against UCLA on March 25, 1972, and lost by a close margin - a date that lives in our memory because it was our wedding night, and of course we had to stay up to see the conclusion of the game. Our marriage has had a much happier history than FSU's basketball program!

whoa, hoss, not so fast

I'm going to keep this short. Today I learned that my lymphoma has reared its ugly head again. This will require two more chemo treatments in October, then more vital organ testing in November, and admission to Moffitt Cancer Center in mid-December if all goes well, not on November 9.

My heart surgery delayed my admission in August, as initially planned, but that surgery was necessary. Some good news is that (if all goes well) I will be back home in five weeks, not ten weeks as I understood earlier.

This my last use of this blog to post updates about my medical situation. Go to http://www.caringbridge.com/visit/al_galbraith for the rest of the story. That's an easier place for people to interact by leaving messages, and I'd love to hear from you.

Recovered, more or less

It's been six and a half weeks since my by-pass surgery and I'm mostly healed, thank God. It ony hurts when I sneeze. I've started cardio exercises where they connect me to a wireless EKG and monitor my heart rate as I "work out," for lack of a better term. The last session included twelve minutes on a treadmill (boring), twelve minutes on a stationary bicycle (even more boring), and some very limited exercises with four-pound (!) dumbells, followed by some stretching. There's a man who brings a CD with hit songs from the Fifties that they play on the sound system, the stuff they'd play for slow waltzes at a sock hop. (I wonder if kids today know what a "sock hop" was?) I'm going to make a CD with some rock and roll suitable for exercising by old guys like me. One of the nurses begged me to do so, so I will.

Last week, the highlight for me was a "procedure" by a urologist to try and save what's left of my left kidney. I will spare you the details, gentle reader, but if you Google "kidney" and "stent," you'll get the idea. I spent last weekend cursing the urologist and swore that I'd call him on Monday to demand it be removed, but by Monday it had settled down from agonizing to merely irritating and now it's tolerable, even without pain pills. I just hope it works.

Next week I'll go to Moffitt in Tampa for three days of testing. In early November I'll check into their facility for the serious stuff. I will keep you posted!

Recovering, slowly (cont'd)

I spent six days in the hospital after my surgery, each day marking a very slow return to "normal." The first few days were marked by little signs of progress - getting out of bed and into a chair, inhaling through an "incentive spirometer" to re-inflate the lungs, going for a short walk, going for a longer walk, and so on. I noticed that some of the nurses are very pretty, which I take as a good sign. I'm getting very tired of being awakened every hour for checking of vital signs and being rousted out of bed at 4:30 a.m. to be weighed.

I got home on Sunday, Aug. 15, thanking God and the magical mysteries of modern medical science and several excellent doctors! Had to sleep upright in an easy chair for nearly two weeks. Sleep is interrupted by having to get up and pee every 1.5 hours, thanks in part to doc's instructions to drink two liters of water a day. I'm getting steadier on my feet and quit using the walker several days ago. I saw my cardiologist last Friday and got an "attaboy" and a "sounds good." If he's happy, I'm delirious.

Watching the Rays play baseball lately is NOT good for a heart patient; they've been losing or winning by a single run in games that go down to the wire.

I am grateful for Facebook, where I've reconnected with friends going all the way back to elementary school. Many of them have been very supportive for the past three weeks and I love them all.

Recovering, slowly

My trip to the hospital, three weeks ago, left me feeling like I'd been run over by a cement mixer, but beginning the second day after the surgery, every day has been just a little better than the day before.

The night of the surgery I was in La-La Land thanks to heavy-duty anesthetics and pain killers, but I was conscious enough to know I'd had five by-passes. The next night was a trip through hell because of the drainage tubes in my chest that prevented me from lying comfortably, and a rapid and irregular heartbeat (atrial fibrillation). I just knew I was lying across a two-by-four and that was causing the a-fib. I finally got to sleep some time after 3:30 a.m.

The next day, the second day after surgery, they removed the drainage tubes and things got much, much better. In fact, every day since has been better than the day before! I started walking while in the hospital and practiced inhaling through a gizmo with a blue "float" to expand my lungs back to normal and avoid pneumonia.

TO BE CONTINUED . . .

surprise

Well, I came in Thursday for an angioplasty and maybe a stent. But, no stent. Instead, they said I need bypass surgery. So I've been cooling my heels in a private room in the cardiac surgery unit, which will be my recovery room after the operation tomorrow, playing with my laptop, iPod Touch, cell phone, and Kindle, thinking positive thoughts. My friends on Facebook, which include more than a hundred real friends and relatives, have sent me all sorts of positive vibes.

When my father was the same age I am now, he had bypass surgery in the same hospital where I am now. That was in 1978. He did well and he lived another 17 years after that, to see his granchildren grow from infants to soccer players. I'll never forget the night before his surgery. I was scared to death but he was as calm as he could be. He didn't fear death and he had utmost confidence in the doctors. The doctors know even more today than they did then, and this hospital is rated among the top 100 in the country for heart surgery. I don't fear death, I also have confidence in the doctors, and all I really want is to get it over with!

finally, a little progress

I got word yesterday that my "procedure" (angioplasty, balloon, stent, Roto Rooter, whatever) is scheduled for Thursday, two weeks later than it would have happened if I didn't have to wait so long for my platelets to come back up AND if my cardiologist hadn't been out of town. That's good. I saw the light at the end of the tunnel six months ago but it was only a 40-watt light bulb and somebody's moved it several times. You've heard the expression, "waiting for the other shoe to drop?" I've heard two or three shoes drop and I'm waiting for the next one. In theory, I don't like the idea of what they are about to do to me, but in reality I'm just going to take a couple of books and maybe my laptop and ride it out. In Thursday, home Friday, seems to be the plan. More later . . .

another week ticks by

This week has been a waiting week, and a test of my patience. I was supposed to go to Moffitt for testing on Monday, Tuesday and Wednesday. I did go on Monday, but after arriving I was told they'd postponed the testing until my platelets come back up. I wasted half a day on that trip. I raced back to Clearwater to have blood work done and was told I need another platelet tranfusion (where DO those little buggers go?) - but the clinic where I get the transfusion closes at 1:00 on Mondays (where do THOSE buggers go on Monday afternoons?). Got a transfusion on Tuesday. On Wednesday, the platelets were still low, but no more transfusions. Tomorrow I go in for blood work again. My angioplasty and stent is tentatively (very tentatively) scheduled for Thursday, depending on the platelet count being high enough. Believe it when you see it. If I get a "go" for Thursday, I'll update this blog again to let you know.

time flies

This has been a busy week for me, reminding me that time flies whether you are having fun or not. My platelet count was low on Tuesday so I got a platelet transfusion. An i.v. bag of platelets looks look a bag of oatmeal, not pretty, but platelets are "transfused" faster than blood. I also had atrial fibrillation and low blood pressure, so I went to the ER and spent Tuesday night and too much of Wednesday in the hospital.

On Friday, my cardiologist told me that a nuclear stress test I had a week ago shows that I have an 80-90 percent blockage in an artery close to the heart. He knows I'm going to Moffitt for testing this coming week. The following week, he will put me in the hospital for angioplasty and a stent. This will be an overnight stay, and I probably won't care that the hospital's TV system does not include the network that carries Rays games.

To his credit, he didn't call the procedure routine, but he did call it a treatable condition. That's been my magic word for nearly a year. If it's treatable, I believe in better living through chemistry. But, I'm beginning to feel like the guy who took his old car in for an oil change and ended up with new tires, shocks, and a rebuilt carburetor.

My blood work on Friday showed some improvement in white cells - 2.0 compared with 0.6 on Tuesday. My platelet count on Friday was even lower than it was on Tuesday, so I went back for another platelet transfusion. I believe Moffitt will do more blood work Monday morning, so we will see if any of those platelets stuck around long enough to be counted.

Thinking ahead to my long stay in Tampa in September-October after leaving Moffitt, I have an idea for a project to keep me busy. A story in today's paper described how a woman scanned all her old photographs - or, rather, sent them off to be scanned. I'd rather scan the negatives than the prints, because the negatives have more information than the prints, the prints are mostly fair or worse, and the scanned images will look a lot better if made from the negatives. I could have the negatives scanned at 39 cents per frame, but a rough estimate tells me that could easily cost me $1,000 or more. However, if I had five weeks to spare with nothing else to do, and if my scanner will work connected to my laptop, and if I round up all my old negatives and take them with me . . . I'll be $1,000 or more ahead and will have a time-consuming hobby to take my mind off of other things. I (almost) can't wait!

here we go, part 2

Well, I promised my faithful readers I would update this more often than I have in the past, but a month has gone by and I'm way overdue for an update. The second cycle of chemo treatments that were scheduled for mid-June was postponed a week because of a low platelet count, and postponed another week due to low white cells. Those little buggers finally got themselves aligned with "normal" and I started the second cycle on Monday. That was an all-day deal, eight hours, followed by four hours today and four tomorrow.

So far, no nausea and no obvious (to me) impairment as a result, except having to get up every hour during the night and having to recover from Benadryl, which knocks me out for a couple of hours when the session starts. I still have my appetite, which is good. I lost a lot of weight last Fall when all this started and the idea of food didn't sound good to me. I think the loss of appetite was a psychological problem. For the first several weeks, I was in (but fighting) the "woe-is-me" mode, struggling to accept the fact I had cancer, the Big C, the death sentence, and then realizing that, no, it is treatable. A wonderful word, treatable. A life-saving word.

The oncology clinic is a wi-fi zone, and I can take my lap-top and my iPod Touch. I can also take my brand-new Kindle, a surprise gift from my in-laws, who decided I'd much rather take a Kindle that weighs mere ounces instead of a dozen or more heavy books to read when I go into captivity - I mean, the hospital - in August. It was a wonderful gift. I have wonderful in-laws. I've mailed them old-fashioned written thank-you notes stuffed with photos of our three grandkids.

So now I'll have a couple of weeks to recuperate, and in mid-July I'll go to Moffitt Cancer Hospital in Tampa for three days of testing of my vital organs. Barring any ugly surprises, I'll enter Moffitt in mid-August.

And I promise to keep you up to date more often than I have.

here we go again

My half dozen regular readers already know this story, but I'm overdue in updating my optimistic report about my cancer treatments. It seems I was overly optimistic.

So now it's back to Square Two in my fight against lymphoma. I had a cycle of chemo treatments in Clearwater on May 26-28, and will have another cycle on June 16-18. Then, testing at Moffitt Cancer Center in Tampa to see if my vital organs can withstand what I'll call the Neutron Bomb treatment. If so, they'll harvest stem cells from my blood stream and I will get that treatment at Moffitt in early to mid August. I will be in the hospital at Moffitt for one to three weeks while the stem cells work on repopulating the bone marrow, then must find a place to live in seclusion within 15 minutes of Moffitt, with a live-in companion, for another 30 days or so. When I get home, I must avoid the office and people for another month or so, which brings me down to October before life will begin getting back to normal. I may be susceptible to infections for months afterwards, so if you find yourselves asking "who was that masked man?" - it might have been me.

All of this seems to have coincided with baseball season and the Rays are doing exceptionally well, so I am looking forward to watching the Rays becoming the Boys of October and winning the World Series this time. I am very happy to have gotten my travel "bug" adjusted, having seen all of my beautiful children and grandchildren at least once over the past three months.

As I said to a friend from high school who is going back for treatment for prostate cancer to see if it spread elsewhere in his body, getting old is not as much fun as they said it would be!

happy Hazel

happy
Originally uploaded by megang

proud parents

proud parents
Originally uploaded by megang

Emmet, born 28 March 2010 @9.46am to proud parents Allison & Greg. After one week he gained 9 ounces over his birth weight. Nice work, Mom and Dad!

our newest family member

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Originally uploaded by galbr8th

Welcomed to the world in Cambridge, MA, on Sunday, March 28, 2010. Mother and son are doing fine, and so is his admiring grandmother!

finally, back to normal, whatever that was!

I'm proud to say that my last chemo therapy treatment for lymphoma occurred on February 2, 2010, and that I'm still here to tell you about my experience, for which I thank God.

I'm a skinnier version of my old self and I lost most of what little hair I had, but the weight loss is not regrettable and the hair is beginning to come back.

I'm back at work on a full-time basis. I'm glad to have a job to go back to, doing work I enjoy with people I enjoy working with.

I still have an issue with a kidney but it is not terribly serious and I will spare you the details.

I notice that every sentence in this blog entry begins with "I." I'm not that self-centered. I'll go back to my old form, taking shots at politicians and rooting for the Rays baseball team, beginning with the next entry.

finally - one more to go

This time next week I'll undergo the LAST treatment for lymphoma. Thank God.

The first five didn't bother me much, physically. Looking back, it was the emotional reaction to my whole experience - the diagnosis, the initial treatments - that got me down. Physically, it wasn't so bad except for the four days I spent in the hospital because of three degrees of fever. Four days in a hospital for any reason is a nightmare, and it made me paranoid about getting infections when my white cell count was down.

The last two have begun to beat me down. I still get around, and I'm less of a couch potato than I was earlier, but I'm much more tired at the end of the day than I was.

What's remarkable is that they found blood clots in my left leg, behind the knee and in the ankle, and for that reason the swelling still hasn't gone down despite taking Coumadin and getting shots of Arixtra daily for nearly two weeks. The swelling was the original symptom that lead to all this. The active cancer cells are long gone, but not the swelling. The nurse at the clinic who deals with blood chemistry problems is mystified. She says they'll likely refer me to a cardiologist to deal with the blood clots.

So, if I can get through next week, and if a cardiologist can perform a miracle to get the swelling down, I can begin getting back to normal.

what a difference ten years make

Here we are, looking at the end of another decade (although, technically, it doesn't end for another year, but explaining why isn't worth the energy).

Ten years ago, I was feeling good because it appeared that world peace was about to break out. The Soviet Union was gone, the Berlin Wall was down, the Pope had visited Cuba, and the Parliament of Scotland opened for the first time since 1707. Well, OK, that last item wasn't all that relevant to my false sense that the world was in very good shape, but it helped.

Wow, what a fool I was for being so naive and misinformed. The news media will be full of stories over the next few days detailing all that went wrong in the past decade, ranging from the disputed presidential election in Florida in 2000 to the disasters of September 11, 2001, and downhill from there.

However, on a personal level, this decade has been good to us. Our children finished undergraduate school, and two earned master's degrees. They are all gainfully employed except our son, who's in the third year of dental school. My wife is a ten-year breast cancer survivor, and she's still employed despite budget cuts where she works. I am on the verge of being declared a lymphoma survivor. Better yet, we've been given two beautiful and healthy grandchildren, with a third due in April.

I hit the ripe old age of 65 this year, which is remarkable because a lot of us children of the Cold War never really believed we'd live this long. I've now worked for my employer longer than the three other cities I've worked for in the past and plan to stay on for a few more years if they'll have me. I can't retire soon; I need to pay for my wife's new kitchen and my new Corvette!

To my faithful few regular readers, and the occasional random reader, I wish you nothing but good in 2010 and every year afterwards. May God have mercy on us all.

Five down, THREE to go

Well, nuts. I've been counting down the chemo treatments from the beginning and, according to the schedule, next Tuesday should be my sixth and final treatment.

Not so fast.

Yesterday, the doctor apologized for not telling me the last time we met that I should have eight, not six, treatments. He is concerned because the "pet" scan showed a minute trace of cancer cell activity in the bone marrow - so minute that it wasn't detected when the lab first saw the scan results, but did show up when they were testing a more sophisticated and sensitive machine.

So, instead of being done by Christmas, I'll be done on (or about) February 1.

Meanwhile, I feel fine despite having low white cell and red cell counts during the first 10 - 14 days after each treatment. I'm confident I will feel a helluva lot better when my body finally rids itself of the chemicals but I'm grateful that the chemicals rid my body of active cancer cells.

Stayed tuned . . .

Thanksgiving in Seattle

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Originally uploaded by galbr8th

Two cousins, our first grandchildren, got to share space and toys for the first time last week.

four down, two to go

I'm now four down and two to go with the chemo treatments for lymphoma, and the good news for me is that my "pet" scan shows no active cancer cell activity. A "pet" scan is not like an X-ray. It traces a radioactive glucose solution that runs through your body starting about an hour before the scan. Because the cancer cells gobble up the glucose faster than normal cells, they "light up" on the scan so the doctor can see where they are located.

The scan showed some enlarged tissues but the doctor said they are scar tissue or dead tissue that will be absorbed by the body.

The most obvious sign, for me, is that my swollen left foot and leg have gone down dramatically in the past few days. Today I wore shoes, not sandals, for the first time since this whole thing started back in August.

Light at the end of the tunnel!