Will the Real ..........Step Forward

It was a Christmas Party. Gathered there, together, were family and friends. Around the large room were groups sitting and standing and visiting. All of the laughter, the chatter, and reconnecting had all the chords needed for a Christmas Carol. I felt a happiness inside that took me by surprise. It was so deep and warm. Then I woke up! Lynne had to get up so I called out to her in the dark, " Merry Christmas!" She said, "What?". I repeated, "Merry Christmas!". There was a pause then slowly she asked, "Are you okay?". "I'm okay", I said.

For a bit, I lay there, enjoying the afterglow of the warm tingling that I was experiencing. And I thought to myself I wonder what would happen if the "day time me" of the last blog were to meet the "me of the night"? So I was curious who would wake up "the day time me", or " this Christmas fellow"?

Waiting and Waiting and Waiting

I'm sitting in the Sundial Area  on the 2nd floor with windows to the main entrance at MDA. It's a common area for people who are waiting, waiting for tests, appointments, results of tests and appointments or whatever. It is a good place to pass time. I wanted to say, it's a good place to kill time while the Cancer kills us. Next to me sits another elderly gentleman. At first he was reading and now he has been sitting motionless just staring at the people down below at the front lobby and the coming and going of the courtesy buses from the different hotels, loading and unloading, people coming and going. All day long people coming and going and waiting. And I am there in the thick of it.

It has been a tough couple of weeks. A good way to sum it up would be to say they ran a set of tests and they all came back negative. Energy Level - Neg.,  Ambition - Neg.,  Appetite - Neg.,  Attitude  -  Neg.,  Patience - Neg. The fact that the sun did not shine much this last week was actually a bright spot since it made it easy to roll over and go back to sleep. It was about the only thing that was enjoyable. I think I could actually sleep 12 to 15 hours out of that Sundial's rotation.

So this is the morass in which I find myself. I feel like I'm waste deep in a swamp with no firm bottom and exhausted from the constant struggle to extract myself from the mire or at best stay afloat. Extracting myself from the mire is about as good a metaphor as I can think of. On the way out of the parking ramp I'm on the 10th floor and I'm behind somebody going so slow, I think a wheel chair could have passed us. Hey, I finally tested positive for something ...anger. For all you analytical types out there can you see where this is headed? I'm guessing there could be a bit of depression going on.

This was started on Wed. Today is Sat. I have since found out that the gentleman I referred to in my blog of June 9, titled, "It Goes With the Territory" has died. He had an infection and then a heart attack. That makes 3 people that I know of that have died following a SCT. I am reminded again that the silver cord in the old hymn is thin.

<< Psalm 69 >> New International Version 1984 1Save me, O God, for the waters have come up to my neck. 2I sink in the miry depths, where there is no foothold. I have come into the deep waters; the floods engulf me.

13But I pray to you, O Lord, in the time of your favor; in your great love, O God, answer me with your sure salvation. 14Rescue me from the mire, do not let me sink;

---

What's New?

Often when I sit down to write one of these entries I have something definite to write about. That was relatively easy when there was a lot going on and the treatment had a day to day element involved. Now the course of treatment has taken a new course. It is one of monitoring and maintaining and adjusting. That's what last week involved. The blood work showed my neutrophils were very low as was my white blood cell count. So they gave me a neupogen shot to increase the production of neutrophils which are necessary for infection fighting. Also my magnesium count was low. This has always been an issue since the SCT because of the tacrolimus I'm taking. I have been able to maintain a good level with magnesium oxide pills but that creates a diarrehea issue which in turn throws off the other medications, including the magnesium and the tacrolimus. So they gave me an IV of magnesium (easier to tolerate) and adjusted my tacrolimus dose as well. Monday I go in again for another blood test and probably adjust again. Each time medicines in my system get out of dosage there are side effects. Tacrolimus causes me to have shakes and when the counts get high it gets pretty bad. My signature last week could have been mistaken for a doctor's. Low magnesium leads to low electrolytes and other problems.  That's the way things are going now and it involves a lot more monitoring on my part since the time between Dr.'s visits is getting longer. It has been 4 months now since the SCT and the next big mile stone will  be 6 months. There be days my friends it's like watching grass grow during the year of the drought.

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.