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.