the merry travelers

Wow, how time flies when you're having fun. Now in sunny AZ. We escaped snow in SLC and on the trip south by a matter of hours. Cedar City had a half foot a few hours after we passed through last week on our way to Las Vegas. However, coming from the south the weather was rainy in LV and the rain chased us all the way to PHX. However, we are clear now, if not AZ warm. Yet high temps in the 60s are not to be poo-pooed when the temp in Logan as I type is 27 F and there is some snow on the ground.

The Kicks jazz concert went better than we thought it would and had some good moments that got the audience up. I felt fairly good about my part in it all.

We have taken to staying at the Green Valley Resort in Henderson NV on the way to and from UT. It gets us a half hour closer on the trip south, is inexpensive, easier to negotiate than the strip, has some dyno-mite bars and a great oyster bar/sea food restaurant. Prices are nominally better than on the strip, too. But we usually end up spending the savings on food and drink.

My respiratory health has improved. My chest is drying out and I am breathing much more easily. No way to know why. Just thankful that my coughing fits are much reduced-almost nil in fact.  No change in the neuropathy and arthritis, but all that is livable.

Looking forward to a relaxing 6 weeks here. Already the food, the company, and the living have been excellent.

happy thanks.., etc.

Us on Thanksgiving Day, 2012 from the deck looking SE. What a difference a year makes! The old kid has hair! Actually he's doing okay. Still hassling with lungs in re allergies, or a virus, or dirty air, or box elder bugs, or whatever. My last trip to the doc got me an antibiotic. While that may have helped, it has not rid me of a continuing cough. Of course, they (docs) all say this is the worst year they have known in our area, what with forest fire smoke most of the summer, and few storms to clear the air. We are now verging on our winter pattern which is to say, inversions, which are essentially trapped particles of the PM2.5 and PM10 micron size, all of which are like smoking a pack a day if you are forced to breathe them. We long for snow which has the effect of clearing away the inversion. We got one dandy a couple weeks ago but have had nothing since. You can see from the picture that our ground is bare.

Still also hassling the arthritis/neuropathy stuff which makes walking interesting. Very important that I do my stretching and strengthening daily.  All of the foregoing is livable in the absence of the big C for the time being.

Our usual Thanksgiving Day with Dan Cornell down from Jackson WY and Lisa up from SLC, this year joined by Jerry and Sue Fuhriman. The food turned out well. Our family tradition is to barbecue the turkey which inevitably causes great worry but is always done perfectly in about 90 minutes. I'm thankful that went well. Dan helped me get on the snow plow which, I'll bet, sees little use this winter.

Really just two weeks to get everything done--concerts, port flush, meetings, and the like--until we are on the road to AZ for 6 weeks. Still looking forward to that.

Hope you all are as well as we are--better even. I'll stay in touch, natch.

a time to rant..

I had to come home and get off the road before I did damage to someone or myself.  Here is how it started. My family convinced me to head back to Instacare because I have had a couple big coughing fits and my hacking doesn't seem to be going away.  But then neither are my hay fever symptoms.  So I dutifully went this morning.

I was greeted with the comment that the intake might take longer than usual since their computers were down. But everything did not really take much longer than usual. I told the doc I was wheezy several times a day and that my daughter had been diagnosed last week with whooping cough (pertussis). Yes, I had been in contact with her. (They all donned masks.)  So it was into X-ray for a chest scan (negative) along with apologies because the computers were down. Then back to the examining room to get a swab from my sinuses and to await the doc. She decided to proceed with an antibiotic without awaiting the cultured swab (2 days). Her reasoning: That way we take care of any other bug--if there is one--that is causing this and if it is pertussis we're after it. Result: 2 scripts--one for Zitheromax (sp?) and one for an inhaler. Gadzooks: Images of my father popped up in my head as he spent most of his adult life sucking on inhalers. Anyway, I was assured, the meds would be at Walgreen's before I could get there.

Well, I have been quickly to Walgreen's in the past and been told they needed 15 more minutes, so I decided to drive to Smithfield and our local branch of the credit union to fill in the time. I needed to transfer $ from them to the bank (also conveniently in Smithfield) to begin the annual property tax payment and to care for the monthly VISA bill. Sorry, they said, we cannot process a transaction in this amount since our computers are down. How soon will they be back up? Oh, we expect them to be up momentarily. Okay, back to Walgreen's where they tell me they haven't  heard from Instacare. So I decide to kill more time by driving farther into Logan to visit the Credit Union branch this is downtown. Inside, they inform me that the computers are still down and they don't know when they will be back up.

It was noon. So I decided I would put a bunch of time into the waiting process by getting a Jimmy Johns sub, eating it, reading my Kindle (Salman Rushdie's Joseph Anton) and approaching Walgreen's again thereafter. I did. Walgreen's said: "You aren't going to like this." I say, "What?" They say we can't connect to our insurance billing program because the computer is down. I say, something must be happening nationally that is really bad and I'm going home. He promised to call. Yeah, yeah.

So I got home without killing anyone, or even seriously pissing anyone off.  Preternaturally calm was I. I'm still hacking, I am unmedicated for it, and by God I am going to take a nap. Maybe magically the computers will be up later on.

life continues

Well, I haven't been at all faithful here, have I? First time I've let about a month go without writing and at least one of you has noticed, called, and said, what up? I've been assuming, perhaps incorrectly that no news is good news. Maybe there are more of you that don't show up in the readership counts who have felt the same way. So, a little catchup is in order.

In any case, things are apace. My back/leg situation is about the same, perhaps a little better. I am working on strengthening my trunk and stretching. In league with the epidural steroids this has provided some relief of sciatica. We just returned from a trip to New Mexico (God bless green chili) in which we were in the car for most of the day on a couple driving days. Pausing is in the cards. Out of the car for a few minutes at Rest Areas, for lunch and so on and I can get through most of the day without additional discomfort. I just have to actively manage it. Unfortunately, I am substituting the stretching routine for any aerobic work. But the back pain, leg pain thing is still improved.

It is hard to judge but I also think my peripheral neuropathy has receded a titch. Still with the pins and needles in the feet, but perhaps a smaller area of involvement, particularly in the right foot. (The right leg went into all of this without any prior neuropathy; the left leg not so because of the injury to my back that was surgically repaired 30+ yrs ago.) There may even be some repair going on in the left leg, too. Still also with a tingle in the hands, but regular (?) arthritis pain is more the norm there.

My cancer is in the rear view mirror still, insofar as I can tell. I complain to my regular doc about  requiring several naps a week, and he says it is a result of the chemo. Chemo, takes a lot of the blame for damn near everything. Speaking of chemo, I get my port flushed this Thursday, snce it has been 6 weeks.

The schedule is like this: get flushed mid-Dec. Play the Kicks Concert. Get out of Dodge for Scottsdale for about 6 weeks. Come back in time to shovel snow in Feb and get my second maintenance month of chemo.

You want to see optimism in action? We just bought a couple TemPurPedic mattresses guaranteed to make us sleep well that will last for 20 years! That's where my head is.

continuing...

The L5-S1 epidural shots seem to be working still. I have found that long hours sitting in boat, in car, etc. are not good. More focused pain. Had a good Lake Powell trip with some striped bass in the box and distributed to friends.  Visited with my Rehab doc yesterday. Went over my MRIs. Wow, talk about clear pix! Upshot is that we will wait at least a month to test the hypothesis that I might get even more relief from an injection in the L4-L5 space. He thinks that nerve responses from there are what are tricking my knees into collapse.  We'll wait to schedule to see that my earlier outcomes are stable and that I may still see progress from further exercise and strengthening.

Kicks Band rehearsals start for me tonight. We are doing a concert of Thelonius Monk's music.

good news..

The epidural L5-S1 shots are definitely working. I have virtually no sciatica now. Still occasional give outs of the right knee, but at much reduced frequency. My regular doc said give it a week to work and it has been that and a little more. So, I am happy. Doing regular stretches and abdominal strengthening now every morning. One side effect: last night I was awakened by a total charlie horsing of my left foot with the toes locked in the up position. Forcing them down with my right foot didn't work right away. I have had this happen rarely in the past.  Eventually the cramping stopped and I was able to return to sleep.

Long car rides are now easier but I'm not home free. I need to get out of the car on a regular basis. But getting to Colorado was much easier after the shots than it would have been before. And the wine fest was a blast.  Off to fish this week at Lake Powell.

MCL (mantle cell lymphoma, for those who forget) is currently in the rear view mirror. Here's hoping it stays there a long time.

Hey, hey, hey..

Well, my immediate impression is that the epidural shots have helped me. My sciatica is not noticeable this morning--we'll see about later on--and I seem to have greater flexibility. My knees are not giving out. The procedure was very out-patient like. Your own space to disrobe, vitals, visit from the doc, interminable waiting, the procedure, back to your space for stabilization, and then out of there. In at 2:30 out at 4:00 with apologies for the wait. Procedure maybe 15 min total. The procedure has allowed me to sort out the focus of different aches, the foot and hand neuropathy and the quiet insistence of an unrepaired inguinal hernia. If anything my lower back feels a bit more fragile, perhaps because things have loosened up down there. Full effects of the procedure are not supposed to be felt for 7-10 days, so I mustn't get ahead of myself.

Off to Grand Junction tomorrow for their annual wine festival, so we'll see how 6+ hrs in the car tests the lower back.

One down...

Read my MRI results earlier this morning. Severe degenerative disc disease. Has a kind of alliterative ring to it, right?. In essence, the pix in my lumbar region show the discs to be dried up ("dessicated"). Where my operation occurred 30+ yrs ago there is a "seroma" filling some of the space where half the disc was removed in what is called a hemi-laminectomy. A seroma is a mass consisting of blood and sera, a sort of self-contained tumor if I understand it correctly. There is no space between the vertebra there. There is very little between L4-5 as well.  When I read this I was amazed that I don't feel worse. When I had my hemi-laminectomy my pain was off the charts. An operation was absolutely necessary. Today I function with a little low level discomfort--except when my knees give way or I sit in a car for extended periods. In the latter case, my pain ratchets up to maybe 8 of 10. And I function with not being able to walk long distances. (Let's be honest here!) But it is also possible that some of my tiredness is due to living with--you guessed it--chronic pain.

A number of friends have had epidural injections for their back pain. Their results and their opinions of the docs who do them are all over the map. Mostly they are cynical. If I were to abstract a common outcome it would be this: good results on the first shot with diminishing returns with each shot thereafter.  Nevertheless, if such a course precludes or even postpones surgical procedures for a number of years, I'm for trying it.

The MRI procedure? Uncomfortable but necessary for the extra detail. Of course they couldn't get it done in one pass: the radiologist wanted more, specifically an inked one. So after 20 min back in I went with an injection, for another 7 min. Hopefully, there won't be another in my future for some time, as I barely fit in that tube now.

So it is onward to the epidural this afternoon....more afterward

Further considerations

One more night on the bandstand and that feature of my life recedes somewhat for another year. My preparations have paid off. I am getting through the gig with some (not much) chops left. The dinner-time thing I did 2 weeks ago went okay. We did it as a trio, guitar, drums, trumpet--no bass--and there were spaces where there should have been music. Oh well, you play the hand as dealt. The current dinner-show-dance has gone well for a couple other reasons too: the show isn't as demanding this year (blowing wise) and we are only doing one long set of dance music (leave 'em wanting more). My colleagues have been gracious in re my return. Ergo, tonight should go fine. It has been a blast as this activity recalls my early days and permits a sort of reliving without taking over my life. I always knew enough to keep my day gig, not to try to make a career of music, and my feelings about that still haven't changed. Today, my day job, is a lot easier (ha ha).

My big concern now has been--still is--my mobility. I worried initially about being able to get up and down from the bandstand. The major stairs thereto are, thankfully, railed, and I have been using those rails extensively. Then there are a couple unprotected steps in two sets to get to where the trumpets are seated. I am being really careful there also. We do have to get off the stand during the show. We wander the audience while playing Tuxedo Junction. Cornball, yes. Effective with the audience, yes. Why? I don't know. I have been able to do this but without much agility, which the 50 somethings in the band still have.

So to the main: Yesterday I met a new doc. He does backs and pain. He took a series of X-rays that I could see--he said we didn't need a radiologist to interpret and he was correct--showed no disk space between the L4-L5 area of the spine. I already have no disc space between L5 and S1 because that disc material was removed in a hemi-laminectomy some 30+ yrs ago. We are going to use a 3-pronged strategy that combines diagnosis and therapy. First, exercise: I have really felt considerable improvement in leg strength and function this past couple weeks because I have returned to doing my stretches and some core strengthening every day. (I have bagged my exercycle workouts until the show is completed.) (Above: L = lumbar; S = sacral areas of the spine). The good news is that my spine is fairly straight in the vertical dimension. Second, epidural injections of lydocaine and cortisone: The first will occur this coming Tuesday. For diagnostic purposes he will first do the L5 space since that is coincident with my sciatica which now radiates down the backs of both legs. He will next do the L4 space, if and only if, I don't get good (complete?) relief from the first injection. The L4 space pain--if there is such--is more coincident with radiation down the leg sides and fronts, which I don't chronically have.  His suspicion is that my knees suddenly buckling on me, is the body's response to sudden pain. Third, he will do electro-myography. This is essentially nerve function mapping via low level electrical stimulation. He believes he can sort out what I am feeling nerve-wise that is due to the recent (acute?) peripheral neuropathy as differentiated from what is happening (chronically, the sciatica) with my back. I have spoken with friends who have had the epidurals. The injections produce a variety of outcomes the most salient feature of which appears to be their variability. Some injections seem to last people (make them pain free) for more than a year, others just a few months. Still others, they do nothing for. They can done at the frequency of several per year. The doc is also prepared to go down the pain med route with increased doses of naproxen (prescription Alleve) as required. Oh, also he has ordered an MRI to further the diagnosis.

So, MRI Monday, epidural Tuesday, regular visit with my internist on Wednesday. Off to Colorado to sip wine, Thursday. I am one busy boy.  More sooner, than later....

The system works...

Well, in our Intermountain Health Care system we can get our own electronic page ("My Health") on which we can access our test results and even consult with our docs. Yeah, right. There were skeptics in my own family. So I sent them a post about my knees giving out. Guaranteed response within 48 hrs. Lo and behold, I was answered by my own Internist--a wonderful, capable guy (Mike Stones). We have been patient and caregiver for 20+ yrs, I think. He opines that I may need to see a specialist; I write back saying I am still not sure this isn't just arthritis. Can he differentially diagnose arthritis from something else? Within a week he is on the phone to me. (My response: Wonder of wonders. His response: not so. I am worth it.)  Anyway, we decide on the specialist since I will be seeing Mike for a regular visit on 12 Sept and this will give us information for that visit. So, I am scheduled to see Dr. Cameron Peterson on 07 Sept.

I am getting on the exercycle about twice a week. That seems a frequency that will strengthen my leg muscles without keeping them continuously broken down. If I do less, my knees complain. If I do more, my knees complain. In between I am doing some light weights and stretches, maybe a couple more times per week. We'll see what the specialist recommends.

I had the second pedicure of my life this week. (No polish!)  The massage part seemed to provide  temporary relief from my foot-related neuropathy---maybe 24 hrs worth. More of this, please. I may schedule this on a monthly basis.

The smoke has been blown away. We can breathe. The nights are cooling somewhat while the days remain above normal. Still no moisture in the north of the state while the south is getting a monsoonal pounding.

I actually have a gig tomorrow night. Two hours. It should tell me how ready to go I am for next week's marathon called Celebrate America. First rehearsal Saturday. Dress rehearsal Monday eve. Another open dress rehearsal for family and friends on Tues eve. Wed eve show and one set of dancing. Th-Fri-Sat show, and two sets of dancing. I have been practicing all summer to get in shape for this not unlike what I used to do to prepare to go on a 5-day back packing excursion. We'll soon see if I have prepped enough and tomorrow eve will be the first signal.

Dog Days

We are having one of the hottest and driest summers on record here in No. Utah. The southern part of the state is finally getting its annual monsoonal moisture, but even that is hit and miss. Top the heat and dry off with smoke-filled air and you get the picture of current life in the Great Basin. Many days the smell of smoke is prevalent and we cannot see the mountains on the other side of the valley. Might as well get out a Cuban and enjoy a real smoke. The dry has affected the fishing as it now is hard to get into many of the reservoirs in southern Idaho and northern Utah that I like to fish. All of these serve the farmers who are understandably irrigating like crazy. Some will drain fisheries dry (alas) in order to make long-needed repairs to dikes and dams.

I have continued peripheral neuropathy. I know this is beginning to sound like a broken record, but I think there may have been some exacerbation of the condition given my most recent maintenance round of chemo. I can really feel it in my hands and arms, legs and feet in the penumbra of sleep early morning and late evening. It seems to conflate with arthritis. At this point I don't believe it is enough to medicate for as it is not causing me to lose any sleep. But I worry how much pain I am living with in terms of my shortness of temper. I feel more angry than usual, so it may be affecting me in ways I don't fully realize. Of course, I am sure that my anger is also related to the sheer dumbness of our politicians in the silly political season we are in, the heat, and more. Perhaps, like the summer and the election, it will blow over. 

I thought the amount of glutamine in the recipe I am taking for neuropathy (5 gms/day) was a mistake since the glut pills that one finds OTC are in the 100 mg range. (That would be 50 pills a day by my math.)  But no.  The health food place sells a powdered glutamine, one tsp of which equals 5 gms. So there is no mistake.  I am told that glutamine is one hell of an antioxidant. In any case it goes down easily in oj and doesn't seem to affect the digestion. The other components, Vitamin E, B complex and alpha-lipoeic acid, are in more usual amounts.  Can't say, given the foregoing, that I feel much effect of this recipe as yet. I am not optimistic about it.

Anyway, I'm still on the right side of the grass as they say and still looking forward to tomorrow.

4th Maintenance

All per usual. I don't feel the effects of this one poison alone. Jan called within seconds of my drip finishing and we met for some Thai curry. She is going to leave me next week. But wait: It is only to visit her sister in Scottsdale for a few days.  Me, I now go back on the port flush schedule every 6-8 weeks. And ABJ wants a meet in 3 months. By that time I will have been a year without a scan and I believe he will schedule a followup at that time. If I count forward to the next booster sessions in 6 months, I believe that gets me to Feb  9, 2013.  Should be time in there to go south for Xmas, no?

ABJ was surprised that I had some neuropathy remaining, I don't know why. But they have a vitamin recipe to reduce the neuropathy which I will start on. Most of it I am already doing, it is just a matter of adjusting the amounts. He was skeptical about my knee problems being caused by the chemo and more in favor of age and the concomitant wear and tear. The nurses, however, are inclined to consider that chemo aggravates whatever you have going.

In my case what I probably have going with my knees is arthritis. It has momentarily cleared again and I can walk fairly well. Couldn't ride the exercycle this a.m. because of the early arrival of our housecleaner and my early infusion. Tomorrow is also out because I am fishing--priorities! priorities! A friend who is into homeopathy suggests a group he believes in thinks that fish oil helps joints, so I am doubling down on that dose every morning. (It may already be working!)

I finally finished The Emperor of All Maladies this week after putting it down for 12 months. And, of course, the last couple chapters are the very most important because they are very current in regard to cancer research (2010). Clearly, if one has cancer, one has it for the rest of their lives. It is a genetic malady. Where targeted gene therapy has been developed in the case of 4 very prevalent cancers, e.g., aggressive forms of breast cancer, it is highly successful. Then after 5 years further gene mutations can occur that preclude the effect of the targeted therapy. This occurs in only a subset of patients so large gains can be made by targeted therapies--but they may not be forever. In the case of all of these prevalent cancers, the entire genome has been sequenced and it can be compared with the normal human genome. All of this sequencing and then testing to develop a therapy specific to a single cancer is horribly expensive. There will be little incentive for the drug companies to take this on. Further, in the case of my rare cancer, why would anyone do the sequencing in the first place if there are so few people to treat?

Oh well, I don't have the time to dwell much on that, other than to lay it out there. Oh yeah, the 4-point buck above appeared outside our window yesterday afternoon. He is part of a herd of town deer that live here. He and his brothers--another with a rack and two more with spikes--have eaten all our plants including all the tomato blossoms. Can the cougars be far behind? USU's freshman class is reading The Beast in the Garden, the true story of the return of cougars to the town of Boulder CO (and a great read). And, just this week, one of our friends had one run in front of her car in a local canyon.

I'll get back to this on a regular basis so that you can continue to see what condition my condition is in.

Ciao

3rd maintenance

Made the acquaintance of another patient this morning, who has a non-Hodgkins lymphoma as well, but didn't know what type. She said hers comes back every three years or so. It may be earlier this time because she said she had surgery to replace a knee and found out later that a big body stressor like that appears to be related to earlier relapse. Makes sense to me, but I don't know if it is more than anecdotal.  Upon telling my internist that I had another inguinal hernia--turned up by the CT scans, but which I can also feel--he said we should do nothing about that right away. So,  I may live with that discomfort for awhile. His response may represent the feeling of the docs against surgery during cancer times (unless for cancer itself).

Routine day and infusion. Not many checked in when I arrived and they served me right up. Red blood cell count was on the lower limit but not low enough to preclude treatment. (I wonder about next week?) In any case I was finished by about 12:30, a record short time. But at that time, the infusion room was overflowing with unfortunates.

Incidentally, my bp has been in great shape, like this morning, 116/65; ditto for the last several measurements. This is without any bp meds. Pretty cool.

My knees are really protesting this week. I rode the exercycle this morning and that usually smooths them out, but did not do so today. I had trouble walking to my car after sitting for the 3.5 hours of infusion and related activities. I still cannot fathom what is going on. Today it is my left knee that is giving out. That is relatively rare. Yet, when I am upright and walking around the problem often vanishes only to return when, seemingly, I haven't been active enough.  Probably need to do something about this, but will await the end of maintenance in another week and re-evaluate then.

2nd maintenance

Except for the time involved--another 4+ hours--there is nothing remarkable to report about my second maintenance infusion yesterday. (Perhaps, in itself, this is remarkable?)  All went swimmingly. I appear to have no side effects that are noticeable. I don't know if the cumulative 4 sessions of maintenance will result in something, but, so far, nothing.

ABJ  (my onc doc, for those of you who have forgotten) paid a visit to the infusion room and did his rounds, so in my turn, I took advantage to ask a question. I wanted to know the status of his other 2 mantle cell patients, both of whom presented before me. One got RCHOP, as did I, but without the Velcade. However, as maintenance, he gets Velcade once a week. Apparently this has been a good regimen for him, ABJ reported, since he has been symptom-free for a fair number of years.  (Velcade every week for years? Wow!) The second patient has not been so fortunate. As I understand it, he got the same regimen that I did (RCHOP + Velcade). His symptoms returned after 3 years. He is now undergoing, or has recently undergone stem-cell replacement therapy,  ABJ cautioned, however, that while younger than I (low 60s), this other patient presented much farther advanced. He also has some other general health issues.  I think that 3 years may have been the median outcome from the Cornell study/trial which we modeled my treatment after.  I did not find out, if the 3-year count was from diagnosis (bad!), end of intensive chemo (better!), or end of maintenance (best! since maintenance is 2 yrs in and of itself).  I will attempt to do so.  Ergo: mixed news. Nothing to make of it as we are all apparently unique cases. And in any case, these other outcomes won't change my behavior appreciably.  But, interesting to know.

I've put on a couple pounds. My daughter makes the most delicious pecan rolls (tutored in the past by her grandmother) and my fishing partner(s) and I take time out from that labor (!) to have coffee and a roll. A couple of these babies a week and voila--heavier.  Like this morning, for example. So I can fish the next day after treatment and my burgeoning good health--those near me say I look better and better and I feel good--appears to be a fact.  Off the sauce for the duration of maintenance. Shouldn't that help? Well, probably not, as it has become habitual to have a virgin tonic and lime (or 2) each evening.

Thanks to all who have taken time to call or email on my current status. It is very meaningful to me that you patiently follow my musings and think to get in touch. Couldn't do it without you all.

Back on again next week, unless things change.

Maintenance

Weight = 234 lbs

Today marked six months to the day of my last chemo, which meant that I started again, on maintenance. The pic is current as of this morning. Maintenance was horribly familiar: all the same smiling faces (i.e., the nursing staff) and the patients (i.e., forced smiles?). We started with a small bag of benadryl to counteract any allergenic reaction to the forthcoming poison and then a large bag of the actual poison (i.e., retuxin). This last one was dripped in slowly to ascertain whether I got into allergenic reaction. I didn't. Entire process was within a lick of 4 hr. Mostly the benadryl made me sleepy, so I cruised listening to Arturo Sandoval's new album--a tribute to Dizzy. (Thanks be to Larry S for that--a fine big band set of arrangements of Diz' tunes, with wonky meters and all.) Jan brought me a sandwich and before you know it, I was on the way home. Felt a little light-in-the-loafers but that may have been due to leaving the infusion center where the refrigerated air had to be in the 60s, while the outside air was in the 90s and the car was in the 100s. I seem to have just as much hair as I used to, but it seems less manageable somehow.  I feel a little tired, even with the sleep during the procedures this morning but it is warm, I am still carrying a load of benadryl and I have been power spraying the deck. I did an hour before I left this morning to culminate 9 hrs to get the grime off. Staining to follow directly.

Faithful readers will know that I may still be in denial. Tomorrow will tell how much this new round kicks my butt. But, I don't expect much and have been given to understand that I shouldn't. So with fresh eyes in the morning, the possibility of several hours among the largemouth bass of SE Idaho will be contemplated.  My buds have all been accommodating. Strum, Plunk & Toot have agreed to meet on Wed eves for the next several weeks, and my lunch buddies ditto. That way I have 6 days between me and those activities and the prior infusion. Fishing can be fit in everywhere else.

So, I hope it is business as usual. My right knee has repaired itself somewhat--I can walk reasonably well on it, notwithstanding still arising poorly. My residual neuropathy is just that--residual. I can and will deal with it all. More if I have exciting stuff to report, otherwise probably not until the next maintenance session a week today.

Ciao.

An Update

I had a minor accident this week which is nagging at me for what it portends. Jan and I were unloading bags of weeds at the Hyde Park green-waste disposal site. This has been redesigned for the convenience of the user, except that the new design has increased the danger of using the site. Prior to the redesign one pulled up alongside one of two massive, uncovered dumpsters, each the length of a semi-trailer. In fact that is how they are hauled away to be emptied: they are winched onto the back of an empty semi-trailer frame. One stood in the back of one's truck to peer into the dumpster. Now they have built a small hill beside the dumpsters up which one drives, so that, instead of emptying your waste over your head into the body of the dumpster one is on the level of the top of the dumpster looking down in. (If you ever fell in, you would not be able to extricate yourself since the sides look a good 10 feet from the bottom.) The idea of the redesign obviously was to get more waste in the dumpsters and less on the ground. Long story short: With my left leg, I stepped between the slump block side of the hill against which the dumpster sits, said hole being about a foot wide. With no place for my leg to stop, I sank to my crotch while watching my right leg, the knee joint of which would not hold me up, slowly give way until was in a split with my right leg splayed perpendicularly from my crotch and horizontally away from the hole and my leg below the knee canted at a good 45 degrees. Nothing snapped, but the knee was definitely torqued. Since that time, now about a week, I have been unable to put much weight on my right leg. This knee joint has been bugging me for months, moreso than ever with the chemo, behaving very arthritically. It gives out on me without notice. Now I really have to hold onto to something to rise. Disuse seems to exacerbate the knee which will hold to allow me to walk once I get going on it. But there are limits: I can't seem to go very far on it without tiring.

Add to this a couple other little facts: First, if anything I am noting what seems to be a sharpening of the pins and needles and pains of the peripheral neuropathy in my legs, including feet, ankles, and probably knees. Ditto a bit more in the arms and hands. And this week, I am back napping almost every afternoon. Conflating factors: I have been somewhat more active in the yard, weeding the tomatoes, sanding a couple of benches, mowing the weeds, also doing a little fishing. (That has been fine, per usual.) Add to this, it has been record hot, and I always slow down a little during summer. But overall, I think again that the neuropathy has ceased receding. I don't want to contemplate what that means. I have fallen off my exercise plan--that is probably part of this feeling more tired, too.

About 13 days to my first booster chemo session.....

home again, home again

All seems well. Jan and I have safely returned from a 2300-mile road trip through CA and NV. We started in snow in Eastern Nevada--true story at the beginning of June!--and ended up in the 105-degree temps of Las Vegas about 10 days later.  We had close calls--lane changes abruptly because a barrel loomed up in front of us while at freeway speed in rush hour in Reno--during which I swerved and a school bus alongside me swerved concurrently to get away from me. But neither of us went far enough to involve either one of us or anyone else. We had one more of these in the trip. We were also present when the EMTs started rappelling down a cliff to approach a car that had recently (and fatally it turns out) driven over just before we arrived. It was deep and steep enough that we couldn't see the car from the road. This was east of the northeast entrance to Yosemite--a lone female. This was a scary road as was Highway 1 from Carmel to San Simeon--large drop offs and no guard rails on both in some places. Advanced age and resulting poorer depth perception made us more cautious than we would have been even a few years ago. A second go at Cirque de Soleil's LOVE tribute to the Beatles at The Mirage in Las Vegas was as enticing as the first a few years ago.

I only had one moment of total inability. My knees simply wouldn't hold me on a steep downward,  cemented slope to an NPS overlook in Yosemite. Other than that, I covered Hearst's Castle's steps fairly well and managed the village walks in Carmel. But I am a full two weeks out of shape as my exer-cycle ride proved this morning and my trumpet practice has proved this past couple days. Long stints in the car are truly bad for whatever it is that afflicts my joints. But other indicators still suggest health. Negatively, I think that the recession of the neuropathy in my lower legs and feet and to some extent, my hands, has ceased. Still, we'll see.

1, 2, Ready, Flush

Weight = 232 lbs.

Had my third port flush this morning, which means that I have been out of chemo roughly 18 weeks. (I get a flush every 6 weeks for six months to keep the port from clogging up in the interim.) This means, also, that my next flush will be at 6 months post-chemo, ergo, coincident with my first maintenance infusion. That infusion will occur on July 19, exactly 6 months since my last infusion of the 6 x 3-week cycle that ended on January 19. (Actually it is 7 weeks from tomorrow.) I am told to expect to be there as long as 4 hours--there goes the day--because there is the possibility again of allergic reaction, which I did have when I first started all of this last October. That July 19 infusion will be followed by three more, one each on July 26, Aug 2, and Aug 9 after which I am good for another 6 months.

Other than that, happily, life goes on. Faithful readers know that I have been fishing in the last couple weeks and that Jan and I, to celebrate 50 years of marriage (June 8, 1962, how 'bout them apples!), are heading for California next week to revisit Carmel, San Simeon, and Yosemite--a nice, old-fashioned, American road trip. At the end, we will tie into our daughter and her aunt (sis/sis-in-law) in Las Vegas for a birthday celebration mid-June. Then home to some serious local fishing.

There is continued good news on the health front. It is possible that my neuropathy is continuing to decrease. It is just so damned slow, that it is hard to tell. It is also possible that my general stamina is increasing. I turned enough garden soil, added 50 lbs of soil pep and planted 4 tomato plants yesterday as evidence. That led to an almost immediate 1+ hr nap. But I was quite refreshed upon awakening and feel good enough today to plant four more--which I am currently putting off whilst I write this. (The mind is a devious thing.) Again, the progress is so slow that it is hard to tell. From the above you can see that my weight is unmoving. In addition I am eating and sleeping well, am on the exercycle and treadmill regularly, so what's to complain about? Just the aches and arthritis pains of old age, methinks.  

Probably my last post until we return, refreshed from our road trip. I will try to remember to post a pic coincident with the 6 months out-of-chemo time frame so that you all can see what the hairy bugger currently looks like.

more of the same, happily

Made a nice fishing trip this week and kept up with the guys on the trip who are about 10 yrs younger than I. No naps required. Still absent leg strength and still with the neuropathy in the lower legs and feet. But hey, I can live with it. And it may still be slowly receding. All-in-all it appears like progress toward complete health--if such is possible at 73 yrs!

TMI

My God, I have passed another milestone. For the first time in 8 months I have had to clip the hair out of my nose! Yes, I was surprised, also. My wife and others report that my hair is filling in the places on my head that used to be sparse. It is certainly growing in fast, and is unruly in the way it seems to go. Maybe another pic is warranted. I have also noticed that I have horizontal grooves on each of my nails, the numbers and spacings of which appear to correspond to each infusion cycle. So the poison seems to also kill nail tissue.  Not much change in stamina, or in leg strength, or in neuropathy, but I have gotten a couple yard tasks accomplished, and I did manage the boat ramp at Lake Powell last week. At the beginning of each of three walks up that ramp, my knees would predictably buckle, occasionally joined by a hip. But it just seemed to be a matter of shortening my stride and slowing a little and the journey was made without further ado. (On the 3rd day, about 2/3s of the way up, I was offered, and accepted, a ride.)

By the way, fishing was not bad. It seemed to get better each day there and I brought home enough walleye and small mouth bass to make a good batch of ceviche. Now preparing for my second excursion there in the middle of next week.

Not much new...

And that's good! I continue to gain strength a little at a time, not knowing if it is post-chemo weakness or 73-yr-old weakness. But I got in 30 min on the exercycle this morning with no difficulty and a good hour on my horn, too.  And my chops felt strong! Still with some neuropathy mostly now in the lower legs and feet, but I believe it is slowly receding. The question is still, how far? Still stealing occasional afternoon naps, but the frequency and duration both are down. Night-time sleep is great.

Lake Powell calls. So this Sunday (tomorrow!!) I will steal away there for 3 days of fishing. Afternoon temps look to be in the mid-80s and the bass are spawning and aggressive. Looking forward to a great time, and a check of my stamina. I will have to walk up and down a 400-yd ramp each day to get the towing vehicle down to and up from the water. Should be good.

new developments

As a not unimportant aside, in the The New Yorker magazine this week, there is an article on marshaling one's body's own immune cells to fight specific cancers. This theory--so logical--was disproved erroneously given some unsuccessful experiments of 30 years ago (or so). T cells, killers of invaders of the body, apparently do not recognize cancer cells as invaders. Simply stimulating the T cells at that time was insufficient and the scientific world went away from this approach for quite some time. 


Now, however, what appear to be successes are appearing. I won't attempt the specific biology, but suffice to say bits of the T cells (enzymes? proteins?) have to be inhibited (not stimulated!) and then the T cells will go to work on cancers.  First, the successes were with localized cancers (carcinomas, prostate) but now apparently there are some successes with systemic cancers (e.g., leukemias). Some of these procedures are quite toxic and have been applied as a last resort. Scheduled trials have been stopped in the middle, in one case because after 6 weeks there were no improvements in the experimental group--tumors continued growing. While the drug-company sponsor boogied at that time, the docs kept recording, only to find that sometime later, the cancers stopped growing, then shrank out of existence.


There is no magic bullet, so the drug companies cannot make a million dollar compound (the first one) where they can do so thereafter for a dollar. Therapies of this nature will have to be individually tailored, it is currently thought. So they will be expensive. However, one takes heart that another, promising avenue toward an eventual general (?) cure may be opening up.


In SLC this weekend doing spring cleaning on Midvale II.  Whoopie do.

and so on

Life continues its small improvements. Perhaps a little less neuropathy; perhaps a bit more stamina; perhaps a few less naps, which are all shorter; definitely a lot more hair, which is all longer. My friends say how much better I look. They are relieved. I am relieved for them.  Exercise periods are increasing in length; a few more chores are accomplished; sleep habits are fantastic.

A rainy day today, so the boat's initial run of the season will be postponed a day or so. Ah well, I'll just have to read, have some lunch out with a bud, and kick back for the day. Otherwise, what's retirement for?

getting better

Weight = 230 lbs

Well, I think my strength is improving little by little. I have lost a little weight, probably just due to increased activity levels more than anything else. (At one unreported time a few weeks ago, I was 235!). I have been regular on the exer-cycle and with the weights. Doing about 20 min regularly on the former and a full hour of lifts and stretches on the latter. I think I am less likely to nap now in the afternoon, particularly if there is an activity I am involved in.  (However, when I thought about writing of this yesterday, I soon found myself napping!) I am sleeping a full 8 hours a night with a single interruption, but still may nap. Yesterday I spent about an hour on my hands and knees vacuuming out my boat--yes, it is that time of year--and I think that activity tired me more than I thought it would. But, I am now able to contemplate such activities. That's a gain.

Dare I say it? There is still some neuropathy in hands and legs and ankles and feet. I can especially feel it today in my hands given my physical activity from yesterday. But it may have receded a little. Hope springs eternal.

Wednesday I get my second port flush to keep that device open and usable.  Since the flush happens every six weeks, this means I am about half way to my next chemo. Oh joy.

same old

Not much change in anything to report. Maybe a little less neuropathy, but seemingly plateaued on that score. Continuing to ride the exer-cycle, while the head factors keep screaming that it is so hard, and why do we have to do this, etc., etc., ad nauseum.  I swear it is more a case of getting rid of the head factors than anything else. Maybe a bit less giving out of knees and hips. Still very tired and daily naps occurring. (I must remember that to experience any conditioning effect at all will require six weeks.)

One new bit. In a spate of socializing this week--a very nice spate, mind you--I find that several of my closest friends who are also my age (or more) experience some neuropathy, typically of the feet. They are normally healthy for their ages, working out and generally taking reasonable care of their bodies. So my push into it via the chemo man may not be totally reversible, if, indeed, it is common for old men to develop this condition as a function of "normal" aging. Still, I don't have to like it.

feedback

I much appreciate the feedback from you out there, who are--for the most part--quietly reading my posts and not saying much. You don't have to! But for those who have emailed to respond to the latest hirsute pic, I say thanks.  Yes, I am almost my old self--just aged some by the chemo man.

As I type this, it is snowing, sleeting, etc. This is the time of year here in N. Utah where we get one day of winter, followed by one day of spring--a local weather guy called this "sprinter"--and it drives us crazy. But the trees are happy because it has been, overall, a dry winter, and tomorrow, it will be fine again for most of the week.

I write today to self-congratulate and to publicly get myself to a place where I cannot easily back out. I have hit the exer-cycle now about 3 times in the past week, as well as doing a session of light weights and stretches in between. As  usual the results are surprising, but why should they be?. Granted, I still have no legs, but the muscles in the legs are incredibly responsive to stressing them in terms of growing new cells. I think I am experiencing less "tricking out" of my hips and knees as a result of just this week. In other words going up and down our few stairs at home is easier--right a way. I also think that I am experiencing a titch less neuropathy of de-feet. When I started last week, I did 10 min on the bike; today it was more like 15- 16 and a couple minutes of cool down. My goal is my usual time of  30-35 min several times a week. I find it better if I give the legs a day to repair after this which is why I am trying to insert some small weights and stretching among the exer-cycle workouts.  (Workouts? Really? More like warmups to workouts at this point.) Anyway: Progress is our most important product.

Hirsute is good

The hairy kid is back! And bigger than life. (Well, we have sizing issues on the import and upload photo that I am not going to worry about. I will just write around it.) C'est moi 8 weeks, virtually to the day, after my last infusion. Hair return has been rapid since the poisoning stopped. Indeed, today I had my haircut for the first time since October. (The pic is pre-haircut by an hour or so.) And it felt good. For those interested in the minutia, not all my hair has returned everywhere. It seems to be selective at this time. My barberess suggested that short as it was my hair was curlier than in prior times. She also noted that it has not filled in some places as thickly as it once was--e.g., the beard. But the hairy part of life is essentially good.

Still dealing with neuropathy in my extremities. It is enough to occasionally awaken me. It may be my optimism but it is still possibly receding, however, very slowly. I am going out tonight to see how far I can go with Strum, Plunk, & Toot and in preparation have left my sneakers on all day because I fear that when off, I will not be able to get them back on. You may guess from the foregoing that my musical chops are improving and you would be correct. Still a long way to go, but the last time out, I lasted better than an hour. We'll see if I can get through the entire session tonight.

To help with the reshaping of my bod and contra the neuropathy I got on the exercycle yesterday for the first time in ages. I have nothing in my legs--zero, zip, nada. I did 10 minutes, when my usual workout on that thing is 30-35 min. But one result seemed to be fewer joint collapses (knees, hips) during the day thereafter. I will be back on that again tomorrow and pushing the time some more. For me, it is still the best aerobic workout I do, and has the added benefit now of un-weighting those joints that the neuropathy, and arthritis, and old age have left in bad shape. Later.

life goes on

No new complaints this week. Why should there be? Spent the week on Coronado Island in CA. Typical marine layer each morning, burning off by mid-morn followed by wonderful ambient temps. Resort village atmosphere. Navy fly-boys working by 8 a.m. with the air thereafter variously punctuated with their roars, whirs, whines and screams. Stereotypical beach scene of barely clad volley-ballers and their watchers, joggers, and vacationing families, plus the whole gamut of period costumes from the non-coastal countryside, including fully covered old maids and cowboys. The eating and entertainment scenes were predictably fine. Having done most of the touron-activities in earlier generational jaunts, eating and entertainment could and did take their rightful place at center stage.


I am sleeping wonderfully well. What this appears to mean at this stage is a full 8 hrs per night, interrupted only once, plus a nap each afternoon of anywhere from 45-90 min. I don't believe it myself. Perhaps bodily repair is happening during this time? One certainly hopes so. Or could it just be the declining years? (Say it isn't so!) The wonderful home in Coronado was three blocks from the main drag and all the shops and restaurants one could want, and only a scant block from the beach. This meant that it was easier to walk everywhere than to drive because parking was troublesome. Psychologically, I do not want to walk. I don't know what this denotes, but the feeling has been coming over me for a couple years now and seems to predate the cancer thing. It probably has to do with the perceived effort and is probably a clear indicator of my poor cardiac shape. But there is exacerbation of this condition now because my feet and ankles variously hurt or tingle or are numb or are cold or are swollen or are all of the foregoing. I still have a good deal of edema there at the end of the day, and, last night back in PHX, did not sleep as well as the prior week perhaps because of de agony of de feet. Hands also are still involved, as is a sense of poor temperature regulation. I am bone cold when everyone around me is walking around in T-shirts. Finally, my right knee unpredictably gives out on random occasions and at least one hip seems to be joining the knee in some sort of perverse empathy. So the neuropathy thing persists and at this point I see no further improvement.

feelin' groovy

Well...not really. My legs, my feet, and my hands are killing me. But this too shall pass. The blog title refers to the results of my (now) semi-annual physical yesterday. All the biochemistry was good. E.g., total cholesterol = 145. Mike Stones (my internist) says I should change nothing in my life. I said I was tapering back on a glass of wine each evening. He said, "Wine is good for you." Ya gotta love him. The coronary artery thing that my most recent scan showed, he called minor, and being taken care of by my meds. Disposition of the inguinal hernia should await full recovery. It doesn't bother me too much. (Increased incidence of hernia is apparently due to my abominable surgery for prostate, now 9 yrs ago.) PSA on the charts yesterday was non measurable!!. Still don't have too much gas in the tank.

We commence our second road trip of the spring, tomorrow.

sleep, glorious sleep

Don't know what has happened but I am finally sleeping better. This last few nights = 4-6 hours sleep with an awakening (whiz need), and then additional sleep up to 8 hrs.  Notwithstanding the 7-8 hours that I am currently getting, I am still in need of an afternoon nap of an hour. So there must still be a tremendous amount of repair going on. Haven't stuck the exercise schedule precisely, but did put in 30 minutes and over 3,000 steps on the tread mill yesterday (hence the great sleep?). May try a few lifts and stretches this morning. But the legs still protest with neuropathy. Simply putting lotion on the feet and ankles with mild massage on one day produces fire in the skin the next. Regular doc appointment this p.m. so we'll see what, if anything, that produces.

the flush

Weight: 234 lbs

I am six weeks out today, so they flushed my port. Since I am seeing my regular doc for a checkup next week, I asked them to do the blood work for that appointment today to save me an unnecessary stick next week. The nurse was positive about my neuropathy saying that it will completely go away. I love that talk.  It seems to have improved slightly. Second time on the treadmill this morning in 4 days. Did a mile and a quarter today. Lifted and stretched a couple days back. Tentative schedule: treadmill walk one day; next day lifts and stretches; third day off; then repeat. We'll see how that works. Those fast-twitch, leg muscles need the 24-48 hours to build.

Weight puts me a couple pounds above when we started all of this, but that follows a great deal of indulgence in restaurants over three weeks in AZ. Portion sizes reduced now. However, tapering back on one glass of wine with dinner or prior to dinner every day. What an exquisite indulgence!

Still fatigued, but maybe workouts are contributing. More often than not napping in the afternoon for an hour and sometimes 30-40 min after breakfast in the morning. I remember when I was 40 and first started swimming. I worked myself up to one mile non-stop, free-style per outing, three outings per week. My best times were usually about 38 minutes for the mile, about twice as long as the good guys in the pool. But, it took about three months to work up to this, and I napped frequently as my body responded to the extra demands on it during that period. Hopefully, that is what is happening now.

As to the one episode of sweating at night. We'll write that off as a false positive, probably triggered by too much sugar after dinner that night, or too much heat in the house.  Whatever...

maybe, just maybe

Well, we are home. An uneventful trip up the 15 between the pitiful storms that constitute this year's winter. I have been suffering with an upper respiratory infection shared among my sisters-in-law and my wife. I believe the worst of that has passed. It finally involved some recurrent sinus headaches (shades of chemo past!) and a perpetual drip. We all personally supported Kimberly-Clark (Kleenex?). But last night was an improvement both in pain levels and in sleeping. Energy levels were also low.

But this morning feels better. I am going to attempt a few thousand steps on the tread mill and see what outcomes that leads to. I had no idea that during recovery from the chemo the residual neuropathy would interfere so dramatically with getting back in some kind of physical shape. It has, in spades. But, I think that there has been some receding of the neuropathy lately, in my hands and feet. (I can never seem to feel it in my lips--other than with spicy food--so I don't know about my trumpet playing at the moment. When I played last Friday, I was good for about 20 min. Damnation!) Walking looks and feels seriously old. Head hair is regrowing as is a sort-of beard. It's wait-and-see there, too. Probably time for another pic.

We are home only briefly, flying back to PHX in 2 weeks and motoring from there to Coronado in SoCal for about a week.  More as I know more.

A big shout-out to Sharon in HA, who has just completed another round of this bs and looks fabulous!

uh oh

Last night I awoke sweaty. I have noted throughout the recuperative process that my ability to withstand cold has been wanting. I get shivery rather easily. I am not going to make too much of one episode, but am aware that this is a symptom that bears watching, if symptom it is. I was not soaked, but my T was damp, and it awakened me further when I realized what had happened.. Other reasons: my sis-in-law keeps the house fairly warm at night and I did have a more full glass of wine last night than has been my custom during some of the "wine tasting" I have been doing preparatory to filling the wine cooler at home. In addition, those around me are fighting upper respiratory infections and I still have some otitis media in my right ear. So we'll keep a weather eye out and, hopefully, last night's occurrence will be a one-off.

Doh! moments

My wife and her sister--at whose Scottsdale residence we are ensconced--have been trading sore throats. They have now included me in the circle. For me, the sore throat  has manifested as secondary to otitis media. The main symptom is the throat pain that one gets upon swallowing or yawning, the result of which ordinarily would be an equalization of pressure between the middle (i.e., media) ear and the throat. In this case the pressure equalization is less than wholly successful because the eustachian tube that connects the middle ear with the throat--the apparent major function of which is to equalize said pressure--is plugged with mucous.  I plugged mine as a result of playing my trumpet vigorously with a music colleague from our jam group in Cache Valley who also happens, through a variety of personal circumstances, to be spending a portion of his winter in Scottsdale. The session was a good time in which I learned that I am nowhere really very far along the comeback trail, except at the beginning, but also that whatever ear I have left has not deserted me along the way.  I was able to play about 20 minutes or so before my lips fell into the mouthpiece. The neuropathy responsible for this has not yet receded. But having brought no music with me I had to do everything by ear. It was a useful exercise and I must do more of it, instead of the insidious practice of reading the chord changes from a lead sheet all the time.


In any case, the point of today's post is that I had to medicate yesterday with aspirin against the vicious pain produced by swallowing and I used the Canadian aspirins I have with the few grains of codeine in them. (They are essentially like a Tylenol 3.)  Well, these pills also contain a slug of caffeine contra the usual narcosis of the codeine. This is a principal reason I am typing this at 5:30 a.m. Pop! After a fabulous 4-5 hours of very deep and restorative sleep, I awakened, not to return to Morpheus. However, the usual edema seems lessened and I feel some itch in the balls and arches of my feet. I take that to mean that healing of the neuropathy continues apace, since itch is on the correct side of the pain continuum.  My joints feel considerably better this morning, and I am going to either continue the aspirin course or switch over to some Aleve, because the anti-inflammatory effects of these NSAIDs may also contribute to lowering the amount of edema produced by the neuropathy. Anything to move this process along.

ho hum, another shitty day in paradise

Well one cannot complain much. The weather for our stay in AZ has been pretty good. We have had a number of 70+ degree days that have offered the chance to increase the body's uptake of Vitamin D. Yes, I do mean sitting by the pool with my body exposed to El Sol. What could happen? More cancer? Too bad. In the larger scheme of things it will be just a few minutes, and I am given to understand that skin cancer, all other things equal, is more likely to owe to the several or more sunburns one gets as a child (and I got 'em) than anything that happens at this age. In any case it is only for a strictly controlled 15 minutes a shot. 


We have had a great chance to visit with relatives who live here (and we with them temporarily), and with friends who are passing through from Utah or are in permanent or temporary residence here themselves. Next week that will end and we will head home for Jan to conduct a meeting and me to get my port flushed and to see my regular doc who, I am sure, will have something to say about pending atherosclerosis, hernia, and osteopenia  all of which turned up in the CT scans. See why worry about a little skin cancer at the age of 73 when one of these other conditions is likely to get you first?


My condition: I think I am getting stronger. Less fatigue, fewer afternoon naps, lower frequency of whizzing during the night. Alimentary canal excellent. Pretty good sleeping during the non-whiz times. Some exercise walking; some stretching,; some lifting of light weights.  On the con side: the damn neuropathy seems to have plateaued. I still have deep aches in my fingers and pins and needles in my foot soles and toes. Walking is difficult if I am on my feet for some time. My knee and hip joints don't want to hold me. The edema has receded but has not gone completely. So, on that score I am sort of in limbo. Trumpet playing time is slowly increasing. Time will tell whether I am left with some residuals. 


But compared to chemotherapy, I feel fantastic. Wait, I think I hear the dinner bell...

update from AZ

Actually got some face time in the sun yesterday. And the sun felt good and hot. Supposed to rain today. Yeah, right, maybe a 10% chance. The biggest change for me this week--not having to resume chemo--is my tiredness. I have been napping after breakfasts, after lunches, sometimes both, and still doing 6-8 hrs sleep per night. Maybe, just maybe, that is a sign of healing? The neuropathy continues. For now, it seems in stasis. I have walked a mile a day for the last couple days and am stretching and doing some mild lifts from my old program. Typically, the neuropathy rears up the next day as a consequence. Nevertheless, it is back on the street again today.

sunshine

Drove through fog, snow, rain, sleet and all in middle Utah to get to Las Vegas Thursday, and thence to Mesa yesterday. It is sunny, it is warmer. My neuropathy continues to recede but I still have some residual edema in my feet the balls and toes of which are still sore. Ditto  my fingers. But it is, overall, less. Most of all, I feel old, out of breath, overweight. Monday forthcoming will be the first time in 5 months that I do not start another chemo cycle. Let's see what continued improvements occur.

headache redux

Well, even with two naps yesterday by half-time of the Jazz game (they were down a bunch) I was exhausted, so I thought at 8:30 p.m. why fight it? Slept 'til 1:30 a.m., whizzed, slept 'til 4:30 a.m. By my count that is 8 good ones, though I am still tired this morning. However, I remark that above, because it is. Remarkable. First good night in awhile, but indicative of the fact that there is much sleeping to be done 'twixt now and full recovery. Also, the whiz data are not thrown in carelessly. The chemo has had me up every two to three hours nightly, so last night is much more like old times (i.e., since prostatectomy now 9 yrs ago).  Perhaps I have excreted most of the chemo poisons by now? 

Mixed results on the headaches. Needed two aspirin upon arising, but obviously the amount of pain was less because my sleep was, with the singular exception, uninterrupted. I don't want to take a lesson from the absence of the workout and the practicing. But, I suppose I must. Right now I still have enough neuropathy, that a simple 4-5 heel raises one day produces more edema and very sore shin muscles the next. The same is true for the embouchere.  Fuck it. If I feel like practicing and working out, I am going to. Soon all that other crap will vanish.

Oh yeah: The Jazz won by 3, per usual, through the other team's last second miss.

hallelujah, hallelujah, halle...lu...jah

To my lay eyes the scan reports are positive in re my cancer. Lymph nodes pretty much unremarkable, original ileocecal mass not evident. But, of course, one has coronary artery disease. Does one love butter? Of course one does! Back to the red wine soon!

I got very little sleep last night again due to sinus headache. Even a hydrocodone took some time to work and I cannot go back to the CPAP machine at that point because it exacerbates the condition. Testing today to see whether it has been my stretching or my practicing or both that lead to these headaches. Doing so by doing neither.  We'll see about that later tonight. Retirement means being able to take a couple naps during the day as needed, so I don't feel bad right now.

We are about 48 hours from getting on the road to the Valley of the Sun for several weeks. I still have considerable neuropathy everywhere but it is receding by the day. Today I drove myself to the scans, got some new slicks for my 4Runner and felt free, baby, free! I haven't felt this good in quite a while. Hoping for more....

the return of the sinus headache

Up  since 4 a.m. with a doozy of a sinus headache. Yesterday I felt good enough to engage my stretching routine for the first time in months. But plenty of neuropathy reminds me that I am still in the woods. Also, ventured out into the 20 degree F weather to do a couple errands, but just enough to go from car to store, etc. Third variable: I practiced some. I was very careful not to push on the practice side, just some easy long tones and low, in-the-staff notes. One or more of these is responsible for this damn headache, I am sure. I didn't think it was as vicious as it now seems to be so I just took two aspirins. I may have to bump up to the codeine in another hour if things don't improve. Scans tomorrow. I seem to recall being in the middle of a prior round of headaches during the last set of scans. Hope this is not a repeat.

what I say...

Okay. Here is what is happening: Monday 9:45 a.m. MST I get chest/abdominal/pelvic CT scans; usually they are read and reported out late the same day, so I should be able to report outcomes on Monday late afternoon, or Tuesday morning, here at the latest. I asked AbJ how often he had seen a reversal of outcome during tx. That is, a positive outcome by the end of the third cycle and a reappearance of the disease after the sixth cycle. Answer = rare, but he has seen it once or twice. Since he has been in the game for near a couple decades, odds are in my favor.

I will report every 6 weeks between now and 6 months to get my port flushed. On the second and maybe 4th of these occasions, I will see him to discuss my general health. That is the extent of the monitoring process. Then at 6 months I get four maintenance sessions, one per week for four weeks of the Retuxin (R of the R-CHOP). With no changes in health, i.e., a maintenance of the status quo, I will get four of these maintenance sessions over a two-year period. I assume that those interim months will also be taken up with port flushing and checking on my general health. After that: bupkis.

What am I to look for, I asked? Any untoward changes in my general health was the answer. The sort-of big ones, of course, are unexplained weight loss (non interest in food), night sweats, and swellings that don't resolve.

The onc docs assume a direct correlation between length of remission and non-aggressiveness of the disease. And, therefore, the length of the remission will determine Plan B, if there needs to be one. For example, if remission were short (a few months?) he assumes because I am robust (tada!!) that stem cell transplantation would be a good option. But if remission is longer (e.g., years), then a repeat of some part of the current therapy is possible. Usually, they go with the Velcade (damn!) because one of the parts of the R-CHOP is considered too toxic to go through all of that again. His other patients apparently tolerate the Velcade better than I, though I may be mis-attributing here since I have never had the Velcade alone.

The outcomes of his several other MCL patients are good. All are apparently in remission. One has completed his two-years of maintenance and is at this reporting disease-free.

So back at this stand by Monday-Tuesday of next week for an update on the CT results. Until then, hoist a glass.

the beat going on

Driving to Ogden yesterday with Jan and I had another of those light-headed moments. You will be relieved to know, we pulled over, and she drove. None since, and I drove home after we concluded our business there. Today is the 7th day from the last infusion and I am feeling much better. Still with the neuropathy, but experiencing some waning. I expect that will continue to dissipate. See AbJ tomorrow, preparatory to CT scans forthcoming and planning thereafter, I think.

continuing weirdness

I am so impatient. Yesterday was a pretty max day for neuropathy: feet and hands swollen and tingling/hurting to walk on and use. Today, a little, but not much, less. However, about an hour ago, a huge orthostatic bp effect occurred just sitting in my chair reading. I thought I was going to pass out. Quick movement and maybe a lowering of my head and it was gone, but followed by a number of moments of light-headedness. I took a bp: 120/73 with pulse at 78. Doesn't get much more normal than that. Yet, low momentary bp is what that had to be. Well, a brief 45-min nap and I think I feel better. We'll see. Obviously the poisons are still with me doing their insidious work. And then I remember that it hasn't been a week yet since the last infusion. Shit.

the last (?) Velcade Saturday

Wow! I am so positively looking ahead that the fact that the Thursday administration of Velcade has, in the past, reached out and dope-slapped me on the following Saturday, recessed in my thinking. I really had a good Friday after Thursday's infusion. Felt good after the infusion, too. Slept well Thursday night. Had enough energy to try a few little things around the house. Even Saturday morning, with neuropathy increasing, appetite was good. By noon, I was exhausted. I slept 3 hours Saturday afternoon after having done nothing in the morning. By the time I went down I was getting those perceptual silver-and-black rings in my eyesight that don't seem like your regular floaters. On top of that I did another full sleep last night. So I mustn't get ahead of myself. There is a long road ahead to approximate anything like my former condition.

Rained all day yesterday and we received our first reverse-911 call from Hyde Park City telling us where sand bags were if we needed them. The frozen ground has been un-acceptive of this much ground water and there has been localized flooding. The upside is that if it were cold enough yesterday for snow, this morning we would be working on a couple feet to clear. In reality, there is only an inch. The gods smile.

the fat lady hasn't sung, quite yet

Slept awfully well last night. This morning the usual mixed thoughts about food--hungry, but simultaneously gut-churning a little. Two hours and I'm off for what I hope will be my last infusion for a while. I am going to take extra fluids again with this one--which will make it longer--but it will be worth it if it precludes the low bp I had a couple times back. It may also help with constipation which is still dramatic during tx weeks. I will be glad to see the last of that. It usually resolves in the week following tx. Actually, the official pill taking will finalize tomorrow morning when I down my last 5 prednizones. (I don't recall that I blogged about what those steroids have been for, since I only found out a couple weeks ago myself. They are supposed to stimulate the immune system.)

Then in two weeks, I will drink the barium shakes again and get another CT scan. AbJ is being careful about the outcomes here. I can understand why. I have not been able to get him to tell me how frequently he sees a reversal this quickly after a positive outcome just a few weeks previously. (Lies, damn lies, and statistics are located there.)  If the CT scans are good, then no further tests for 6 months. I will have to be available to get my port flushed out every 6-8 weeks, but that won't preclude some travel which we are contemplating. At that point the booster sessions begin.

On the bright side, in a couple weeks or so, I will be able to resume my regular social activities!

the usual

Having slept most of the day yesterday--or so it seemed--during my infusion time, I worried about being up most of the night. Actually, not to worry. Slept from 10 pm to 2:30 a.m. and was awakened by a sinus headache. A couple regular aspirin, and off with the CPAP and I slept off and on until 5 a.m. All-in-all better than usual for the time during tx. But I arose with a serious head and took a couple aspirin with codeine. Much better now head-wise. The usual not-so-good feelings about food, but choked down a regular breakfast along with an anti-nausea pill. I notice that I have 3 refills on that prescription and haven't finished the first yet, so I must be doing pretty well.

We had about an inch of snow yesterday but this is about the sorriest snow year we have seen in many decades. That is supposed to change this weekend with a series of Pacific storms, but the westerly flow suggests they will produce rain on us and snow in the mountains. Many consider that to be ideal.

ho hum another snowy day in Paradise

Just home from the last R-CHOP infusion of this cycle of six. Now Velcade on Thursday and I'm free at last (see MLK--it's his day). A little spacey from the chemicals; and the usual anti-allergenics (Benadryl) at the beginning put me out. I think I slept most of the six hours I was there. My eyes have been driving me crazy with itch. Today a woman in the infusion room was cursing the chemo gods because in women apparently while they lose all the hair on their heads, they do not lose leg hair. So she had to keep shaving her legs. She declared the unfairness of this. We all wondered evolution-wise why this would be. Somewhere in this discussion eyelashes were mentioned. I haven't even thought to see whether mine are gone. Certainly could contribute to my current eye difficulties. Actually, we have had a winter so far in which there has been enough wind that we have mostly been off the EPA's shit list, so perhaps I shouldn't be bad mouthing the small particulates (PM2.5 and PM10) as producing this problem.

Learned a bunch from AbJ today. We will wait approximately two weeks after my last infusion and schedule CT scans again. This surprised me, but makes sense as a double check on the clean bill after the third cycle. I am optimistic about outcomes there. Then we schedule maintenance/boosters at six months from the last infusion (circa July 19). At that time, I get about a 3.5-hr infusion of the R of the R-CHOP, that is Retuxin, once per week for 4 weeks. The staff say no big deal. The R alone is not enough to produce nausea, constipation, etc. And the hair will come back. They say I will be able to fish the next day. We'll see.

whistling toward the gallows?

Weight = 232 lbs.

Well, weight-wise I am back where I started. In a way that is kind of surprising since during the weeks that are away from the actual chemo, my appetite is virtually insatiable, and I am controlling my eating not at all. My body must remember something about its prior set point for weight since the 232-lb vicinity is where I was for a while prior to my change of life last August.

It has been a good third week, as most of them have been: Eating well, a little more energy; sleeping pretty well; still napping on 3 of 5 days, depending. Accompanied Jan to SLC to get her hair done and linked up with some buds for a good lunch. Overnighted at the townhouse with Lisa and drove back the next day. Driving a couple hours tires me out, an indicator of how far I have to come back. Practicing about a half hour a day, but clearly this activity leads to sinus headaches the next morning. I expect this will go away when I finish treatment. I desperately want to play more.


Speaking of treatment,, I go for my last infusions this next Monday and Thursday. As usual not looking forward to the effects but as this is the last for awhile (?) I can do it.

I still have residual neuropathy, so clearly two weeks of no-tx is not long enough to see whether that condition will abate with a longer period of time away from formal chemo. And my hair is trying to grow back. My scalp gets fuzzy after a week or so, and I have been shaving it to keep it looking cleaner. That activity will stop after next week!

I will also try this week to see AbJ about the next phase. To reiterate, I believe I get re-scanned at 6 months and also get some chemo boosters--like once a week for three weeks. But I don't know how much that will make me sick again or otherwise interfere with life its ownself.

snowy fingers

You remember the feeling in your fingers when skiing or otherwise getting them cold on a prolonged basis? They internally hurt as they proclaim that circulation is returning and they are improving. These are my fingers now, without the necessity of going outside to ski. Yet, this seems to me to be a state of improvement. They are less fat than they were. Ditto my feet, which are still sensitive but also much less fat than they were. Ergo, looking forward to seeing how much these symptoms of neuropathy dissipate during this next week of treatment-free time.

It is finally winter here.We got a couple inches snow last night and the plow trucks came by early this morning to clear the streets. Probably a good day to put a log on and do the crosswords.

abide and abate

Just a hair of abatement with the neuropathy, but still fat in the fingers and sensitive on my feet. This morning I think I dropped or missed screwing in every bottle top and can lid that I handled. Probably a good day to stay away from machinery operation. Mid-morning my eyes started itching so badly that I had to anoint them with some of the Tears stuff and then take a pseudo-ephedrin. This seems a clear indicator of reduced immune function. Or is it immune function run amok? And why allergies? It's the middle of winter (supposedly) here and nothing should be growing or floating in the air. Oh yeah: PM10s and PM2.5s. Our air is loaded with them because we are not getting our regular winter storms. In any case, a couple buds are showing up with sandwiches for lunch later on and I will abide the remaining symptoms and enjoy.

the phickle phinger and all that

Happy New Year to all! Had a pretty good weekend. Bought a new(er) ride on the last day in the last hours of the old year. My old boat-puller was starting to come apart. All that adrenalin in the research, the hunt, the negotiations, etc. appeared to defray some of the symptoms that follow the end of treatment rounds. Lisa came up and we had a wonderful and quiet NY's Eve eating scallops and watching movies. But now I am coming down from all of that. Not only did I sleep for 8 hours (yea!) but I also had a wee nap after breakfast.  And the neuropathy is back in spades. My fingers are "phat" and very sensitive, the balls of my feet very tender to walk on, my eyelids dry and scratchy. Indeed all the mucoidal membranes are primed to report. In addition, the neuropathy appears to have spread. It now appears to be affecting at least one of my taste buds. Maybe savory? Food, in which, I am very interested again, is not tasting complete. It's as though some component of taste is missing in action. And this condition does not appear to be sinus-related since my sinuses are open and clear (and perpetually draining!). My smell sense is acute. We will have to watch this. On the plus side, I can see the end game and overall I cannot complain. Much of the rest of my body appears to be functioning. One more once.