Ceremonies Worth Celebrating

I peeled the cucumber and sliced it into a bowl, and then I went out and picked some tomatoes and washed them and sliced them as well and then I added some green onions. My mouth was beginning to water. To this I added vinegar, olive oil, and some salt and pepper. Then we sat down to eat. It was my first bite of fresh vegtables since the end of February. It tasted soooo.... good. I had been craving both fresh fruit and vegtables and today when I saw Dr. Khouri I asked him if I could. As a SCT recipient, fresh produce puts me at risk for bacteria that could be present from the fields and harvest and handling of the produce. Usually it takes up to 6 months or so for recipient's immune systems to be adequate to tolerate those risks. Since I am just a couple of weeks past 3 months it gives me a real indication of how well I have done. Dr. Khouri said I could! Lynne just sat down with some watermelon. You know, I think I'll have some. Thanks be to God!

Keeping on Chugging Along

I met with Dr. Khouri today and although the results were preliminary, they were good . Some meds need adjusting. The magnesium counts were low as were the tachrolimus counts. The bowels have been giving me a bit of a problem and that could be GVHD related and an analysis  tomorrow should answer that. So it is more adjustments to a process that is working well. So we keep chugging along

Growing Old Gracefully

"As youth recedes into the rearview mirror, and your face slides south in succumbing to time and gravity, and your joints ache from decades of overuse, and your short-term memory becomes a sieve, something curious happens. You get happier. I don't mean the ecstatic happiness you periodically feel amidst the turbulence of your teens or 20's. I'm talking about a growing contentment, an acceptance of yourself and of life as it is, a grateful appreciation for each moment that you continue to draw breath. As the wise old coots  interviewed in our Last Word this week would tell you (see page40), it's not a bad thing to know - to really know - that the number of your remaining breaths is finite."   (Copied from the Mar. 12, 2012  issue of, The Week, by William Falk)

The preceding is a grain of wisdom harvested from the copious magazines on the tables populating the fertile waiting rooms of MD Anderson. As I read that pearl, I thought to myself, I want to be that person, the one who is a friend of contentment,  a lover of my own soul, as well as the souls of others, one not given to bitterness or sour tones, the one who adds flavor to blandness and passion to the ordinary and the mundane, AND DO THAT as  "age" becomes a verb, as in "to age" for which Roget lists as synonyms,  

Main Entry:	age/eɪdʒ/ Show Spelled
Part of Speech:	verb
Definition:	become older
Synonyms:	decline, deteriorate, develop, get along, grow, grow feeble, grow old, grow up, mature, mellow, push, put mileage on, ripen, wane

As I "age", I do decline, deteriorate, and all those other things listed above and they are an automatic and a natural result of aging and they do not tend to make me happier. It don't work that way though do it? (Pardon the vulgar.) I really want to share the writers optimism, that this growing old gracefully is an automatic corollary of the geriatric process. I do, so want to be that kind of person. Yes sirree Bob.  For me though, it does not come naturally, nor automatically. I do, though, repeatedly resolve, to weed out the sprouts of bitterness and  the roots of crabbiness and to not cultivate covetousness and resentment and all "The heart-ache, and the thousand Natural shocks that Flesh is heir to."(Shakespeare says through his man, Hamlet)  I want to be that person who becomes happier, the one Mr. Falk is fortunate enough to know. I must admit sometimes it works and I catch glimpses of that guy. He just never sticks around long and I find myself asking, "Who was that the guy?' 

   ¹⁸ For I know that good itself does not dwell in me, that is, in my sinful nature.^[c] For I have the desire to do what is good, but I cannot carry it out. ¹⁹ For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing. ²⁰ Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it.
²¹ So I find this law at work: Although I want to do good, evil is right there with me. ²² For in my inner being I delight in God’s law; ²³ but I see another law at work in me, waging war against the law of my mind and making me a prisoner of the law of sin at work within me. ²⁴ What a wretched man I am! Who will rescue me from this body that is subject to death? ²⁵ Thanks be to God, who delivers me through Jesus Christ our Lord!  Romans 7:18-25 NIV

It Goes With The Territory

It has been a long long time since last I shared with you how things are going. I had an opportunity to visit with the daughter of a man, about my age who had a stem cell transplant around mid November last year who is also a patient of Dr. Khouri. She teared up as she related his difficult journey, starting with a heart attack the day after his transplant resulting in a stint, 2 times. Since then he has been hospitalized frequently for complications, including Graft vs Host Disease (GVHD). She said that the last time he was at the Dr.'s office he was discouraged, extremely so. He is tired of being sick.

When I am asked, "How am I?" I have to say, "I am doing very well", especially after hearing stories like that. I have had very little about which to complain. Complain I do though at times and discouragement I have felt, even depressed at times. It can't be as bad though as my friend's story. However it does go with the territory of being a long term patient on long term medications(30 plus pills a day) and the energy tank being on empty. So I am doing well, as well as anyone going through something like this, Physically I am doing doing much better than most. I have my issues with GVHD. I have avoided serious complications and on Mon. I have another Bone Marrow biopsy and CT scan and we will get an idea how the transplant is doing. This is the 90 day mark. The next milestone will be 6 months and that will be when meds will be really adjusted. I will let you know how it goes. Thanks for caring.

An Update

Still chugging along. Not much has changed in the last couple of weeks except for making adaptations to my life style. I am finding it very difficult to stay inside out of the heat and out of the sun, both of which I must do to avoid the Graft vs Host Disease (GVHD). It has been a long road and now is as critical as any of it. It is hard to stay on top of it. It would be so easy to revert back to doing what I was doing a couple of years ago. I have, at times, been pushing the limits. It has been difficult to face the reality that I can not do that because of the dangers to which I expose  myself. No gardening, no sun exposure, no heat of the day, you name it, no swimming, watch out for dust. There are times I find myself just sleeping a lot. Indoor life is not my style and that's where I find myself. It is hard to hear the part of this diagnosis that this is from here on - not for a few weeks nor a couple of months - this is from now on, FOREVER! That's what is beginning to sink in and it is not feeling very good. CANCER CHANGES EVERYTHING!


I started this several days ago. Since then we have remembered the anniversary of Josh's death on May  22nd. Anna, Ehtan and Kate and Alica(exchange student) , Anna's folks, Dale and Liz, and Lynne and I did make it to Galveston. Isaac, Katie and Llew were not able to make it. It was different without Josh and it always will be. I did take some of his ashes and scattered them in the Gulf. The first year of anniversaries are completed. The pain is still there but it is not as raw or gut- wrenching. It is a matter of keeping one foot in front of the other and keep moving. That could go on for a long time. So this is the day after and getting motivated is not easy. So we chug along.

Still For The Long Haul

It has been a long time since I have posted. I am doing well as far as the SCT is concerned. I was feeling like I was in a slump mentally and that left me lying low and couple that with low energy and sleeping a lot. As far as everything is concerned though my recovery is going well. I, however, get impatient. I am only having to go to the Dr. one time a week now. I passed the 60 day milestone Tuesday and during the following  2 weeks I will go through the scans and Bone Marrow biopsy again. I have started  exercising at a gym on Isaac's advice, to start building up muscle. So all being told I am doing well and I will try to post this weekend.

Good For The Long Haul?

The last few days I have felt a diminishing of the feeling of gratitude for how well I have felt and how my  treatment is progressing. Some of it stems from the episode in the ER. After processing the results of the MRI it appears there is continued deterioration of the vertebrae and the spinal area, so much so that it probably will require some kind of surgery. Here's where this all begins to get nasty. If I was dealing with just the CLL and the Transplant that would be one matter, one focus, and that was what we set out to do after the initial back surgery over a year ago. However, there are so many facets to the treatment of cancer that are trade offs that it is never that simple. In order to treat cancer there are a host of side effects to the medications used and many of them create havoc on the bones as well as the other parts of the body like the organs. So far my organs are holding up. My bones, not so well. We are, after all treating the cancer so you trade the side effects of chemo for being able to knock the cancer down and you trade the side effects of steroids for the control of GVHD disease, and the side effects of this for that. And it is the Cancer we after. And that is working. It has felt like 3 steps forward and 2 back on some days and progress has to be measured over a long period of time. And when I consider we have been at this for 15 months that is a long time to be a patient and yet it is not, as far cancer is concerned. There are days it feels like the tank is empty. The things I would normally do for recreation or diversion are things I shouldn't do anymore. So we keep plugging away. For example I am on schedule to take total of about 30 pills today and try to keep my gut happy in the process and that requires more meds to offset that. Then I have to sit for about 30 minutes because of the side effects, like blurred vision and flashing lights. Then there are the two to three trips to MDA every week on top of that. Every thing in my life turns around cancer. So there are days my tank feels empty and my "give a damn's busted" at the thought of keeping this up for at least another year perhaps two. I am exhausted from the toll that cancer and the treatment of cancer is taking, not only on me but also my family.

Having said all of that, I am not in any way giving up, rather just letting emotions percolate. However I will find something I can do today that will take my mind off of CANCER!