"I Can DoThat"

Lynne and I were walking across the Skybridge from the Main Bldg. to the May's Clinic. It's about a quarter of a mile long. There are shuttles available or you can walk. We chose to walk this time. Along the wall there are wreaths hanging for decorations, 73 of them, to be exact. Adopt-A-Family Holiday Wreath Auction 2012  at http://www.youtube.com/watch?v=Ea2VYD0czqo was in progress. Each of the wreaths was made by organizations or individuals in the hospital and donated. They were now for sale through silent auction with proceeds going to MDA. We are taking our time and enjoying the wreaths, since my next appointment was some time later and we had time. Then I came upon one wreath that caught my eye. In the center was a water color painting, abstract and very colorful. I called Lynne over and told her that I would like to try something like that, that I could do that. I always thought I would like to try my hand at water colors and having lots of time, why not? Lynne looks at it and then she bursts out laughing. A note on the side of the wreath that I did not read said "This picture was painted by a chimp". I can do that. Well Lynne had to show Isaac when he was there and more laughing. For Christmas, Isaac and Katie gave me a stuffed gorilla and all the stuff I need to start water color painting. I finished my first one, a Christmas card for Lynne. I can do that.

Boring Is Good

As the year draws to a close I am doing well. 2 weeks ago they reduced my tacrolimus and cut out my steroids altogether. Last week they reduced my tacro again (this is a medication to control the immune system so it does not attack the stem cell and vice versa). I have had some problems with this in the past the last time they tried to reduce these medications. So we will watch that one closely. If it begins to happen again they will bring back the steroids. It will be more adjusting and monitoring. The last time I had an infection and was hospitalized was back in Aug. I know that does not seem so long but it is good for me. I spend a lot of time at home and away from crowds to avoid the flu. As the immune suppressors are reduced maybe I will have some resistance to hold at bay any infections. Some of you in your greetings this season have included "good health" for the New Year. Thanks. I do believe my progress, even though it has had its ups and downs, has been how the doctors have wanted it to go, if not even a little better than expectations. It does feel sooo gooood, and I know Lynne and my family are relieved and are thankful. So this is one of those updates based on the labs and reports that are "boring". Isaac reminded me that I need to include that "boring" is a good thing. So boring it is, and boring is good and I will take it.

I'm The Only One Left

The world came to an end this morning and I woke up as ususal. I guess I'm the only one left. I don't see any one else. No, no, wait. My wife's still here too. So it must be just the 2 of us. No, no, wait. Our cats are still here. And I see our neighbor now too. There are his dogs. Soo ....I may have to rethink this.

Changing The Pace

Recently I went back and reread all of my blogs in sequence. It was quite a journey. In that  period of time I rode again the emotional roller coaster of feelings, up and down, from one day to the next. I was surprised at how intense it was. My brother Dirk asked, "Do you talk about anything else besides the cancer?" Quite frankly not much else during this past 2 years. That certainly was true of the blog. And I started the blog for just that reason. It was always my intent to use this as a way to help process my feelings and to help others who were interested in following our journey. Now it has become less of an intense journey and the risks are beginning to diminish. Entries have become less frequent and reports, in Isaac's words, "boring". So in terms of keeping you posted of my progress it will become even less frequent and more carbon copy of last months report, or ditto. I even thought of just shutting it down. That's an option. I have, however, decided to follow another path, at least for a while anyway. I have thought that I might enjoy doing blogs like the previous posting and will experiment with that. I was told by a therapist that I have a rich inner life, (could be code for introvert or recluse). So we'll mix it up and do a little of both.

Hope In A Dark Time

   We stayed glued to the TV all day, my wife and I, as the events of Newtown were reported for the world to see. All kinds of descriptive words were used and we added our own to the mix. As we watched we saw the fear and pain and like others, I'm sure, we wondered  what that must have felt like for those parents, little innocent children shot and sent to an early grave. And I wondered about the phrase that was used, that "evil visited this community today". It seems that evil as a power, still has some credulity as a force that seeks to destroy life.

   I thought about the Cain and Abel story in Genesis, about Cain being warned about sin crouching like a predator waiting to devour. And Cain gave in and Abel lay lifeless. Cain was held accountable. He could have stopped. It suits us well, when we cannot comprehend what happened in places like Newtown to say, "evil visited" us today. That crouching evil exists still and when we see the events played out like that it suits us well to call it "evil". And we have not, for all of our understanding of human nature and mental illness, been able to stem the tide and our fear is that it is getting worse, in frequency and in numbers. Evil it is. We will find out a great deal more of Adam from Newtown in the days to come. We will listen to politicians discuss gun control 'til they're blue in the face as though controlling guns will control the crouching sin and mental health. I am convinced we cannot give up, but it is by no means a new issue. The biblical story tells us that what we saw and heard visit the city of Newtown, that this "evil" has been "visiting" us since the beginning of time and does so all over the world.

  Christmas is coming. It is just as important to hold up the hope of the season as it is to name that evil that is in the world seeking to destroy it. Merry Christmas!! It is our hope.

New International Version (©1984)   John 16:33
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

"They're Boring"

"They're boring." That's what Isaac said when he looked at my blood test results. "They're so normal, they're boring", he said. I got excited when I saw them, since they have been good, better, and now the best since the stem cell transplant. If this keeps up I will be able to discontinue the steroids next week and then will begin to step down on the tacrolimus, the immune suppressor. If I can cut back on that then I can cut back on the magnesium. If I can cut back on the mag. I can cut back on the imodium. Although drugs have been my lifeline, they have caused their own share of challenges along the way, what with side effects, interactions, and the necessity of timing. I do not remember anymore, not taking medicines, since this started, up to 35 to 40 a day. I just had my 9 month checkup since the transplant, including bone marrow biopsy and CT scan. NO CANCER CELLS IN THE MARROW and NO NEW OPPORTUNISTIC CANCERS SHOWED UP in the CT scan. BORING? TO ME ? NEVER!!!

It's his training. In med school they are taught to look for bad things, like a pig after truffles. Me? If I see bad things I want to go into denial. To me these will never be boring. Thanks be to God for a good report.

Happy Thanksgiving

GARY ALLAN LYRICS

 

"Every Storm (Runs Out Of Rain)"

I saw you standing in the middle of the thunder and lightning         
I know you're feeling like you just can't win, but you're trying
It's hard to keep on keepin' on, when you're being pushed around
Don't even know which way is up, just keep spinning down, 'round, down…

Every storm runs, runs out of rain
Just like every dark night turns into day
Every heartache will fade away
Just like every storm runs, runs out of rain

So hold your head up and tell yourself that there's something more
Walk out that door
Go find a new rose, don't be afraid of the thorns
'Cause we all have thorns
Just put your feet up to the edge, put your face in the wind
And when you fall back down, keep on rememberin'

Every storm runs, runs out of rain
Just like every dark night turns into day
Every heartache will fade away
Just like every storm runs, runs out of rain

It's gonna run out of pain
It's gonna run out of sting
It's gonna leave you alone
It's gonna set you free
Set you free

Every storm runs, runs out of rain
Just like every dark night turns into day
Every heartache will fade away
Just like every storm runs, runs out of rain

It's gonna set you free,      
It's gonna run out of pain,
It's gonna set you free

I first heard this song last Friday on my way down to MDA for my weekly clinic visit. It threw me a curve. On a scrap of paper on the seat of the car I scribbled down the phrase, that part about "the  storm runs out of rain, the heartache runs out of pain, runs out of sting". No. Wait. It said every storm runs out of rain. It was not so much a word of promise or an offering of comfort to me as it was the realization of how, now just shy of 2 years of my diagnosis, and an even more agonizing 1 and 1/2 years since Josh's death by cancer and an excruciating "good-bye", there is much we have endured. Overwhelmed by the twisting tempests of cancer, we have rode out the storm. Now my CLL prognosis has a sunny forecast and yes, Josh will forever be missed and the aching will continue but much of the rawness is gone and our remembrance has more to do with our fondness and our love for him. It's running out of rain. It's running out of pain. To remember our path and to have survived, causes me to be amazed and I truly do give up "Thanks to God"  
                       Happy Thanksgiving Y'all

Question?

To Cameron VSJ who has a question, go ahead and ask.

The Indian Summer of Time

Summer is making an effort to say farewell and for a couple of weeks now autumn has been peeking around the corner. Ah, one of my favorite times of the year. It was a year ago now that we found out  that my brother, Dirk, was not able to donate his stem cells and we would then wait for another donor. I remember feeling very well then and wondering why a transplant? Let's just wait and see. Maybe it will go away. Well, now a year later and 6 months after the transplant, I am finally beginning to feel as well now as I did then. The blood counts are good, the appetite is good, energy level is coming back, there was no cancer in the last bone marrow biopsy, and with therapy, my disposition and outlook are much improved. So they are tweaking the meds and adjusting dosages. I had an issue a few weeks back with GraftvsHost Disease affecting my stomach and skin. This will be my biggest challenge for the rest of my life. Most anything can set it off like an infection, bacteria, virus, fungus, or too much sun, or something I eat. As my immune system gets stronger it will be less likely, but always there. My visits to MDA should become fewer and farther between. So with all that in my pannier and Indian Summer I'm doing well.

Enjoying the Wife of My Youth (Prov. 5:18)

She was checking our pony, Scout, where she'd been bumped by a car. Scout was in a great deal of pain and we feared perhaps a fracture. I hold the halter around a post and Lynne massages the muscles for quite some time. Although not able to bear weight there appears to be no breaks that we can tell. Watch and wait. So we check repeatedly, over a period of several days. She's improving.

While I am standing there and I am watching Lynne undertaking this daily enterprize I am struck be the fact that I used to do these.  I was accustomed to doing these things. I am now no longer able to do this, and not just this one but many, many others as well, I remember feeling so gratified, thank full for Lynne and for her stepping in with my care and with the chores and all the tedious travail of a daily nature once relegated to the man of the house, and she shed not one bit of her femininity in the process. Here's to you Hon. Thanks and I love you. Now some 3 months later Scout has not so much as a limp.

Changing the Pace

When composing a blog there is the notion that I am composing and working at weaving a story or theme around some incident and use whatever creative techniques  that are available to bring out the incident and make it as memorable for others as it is for me. Then there are other times I tell the story and the nuances of the story are up to the readers to interpret or add with their imaginations to pick out the importance of different aspects of the story. The latter is easier.

And lately the latter is my inclination. #1. Since the last time I wrote,  the steroids have controlled the GVHD, the appetite is returning, and the sleep is still irregular and in shorter segments. I have followed through on my decision to get some psychological help. That goes well. We have identified some things that I can look at more closely towards working through my grief of Josh's death and the loss of my own health.
I think I am turning a corner.

#2. The other night Lynne and I were watching a T.V. comedy. One line in there struck us as being so funny that we were both laughing to the point of tears. We have not done that in so, so long.  See? Another way to say I appear to be turning a corner.

Round 2

True stories are always in retrospect. Fiction you make up as you go along and bring it out any way you wish. Since these blogs are nonfiction, they develop as we go along and  grow in segments as the events  unfold.  It all started a week ago Friday. I had an appointment with Dr. Khouri and he was somewhat jovial when he came in, a big smile on his face. He said everything looks good and we can cut the steroids in half. Lynne asked about the results of the Bone Marrow Biopsy. "Oh yes, the results of the Bone Marrow  Biopsy are good. There is no cancer evident". "Do you mean it is in remission?" asks Lynne. "Yes ".  " We can use that phrase, remission"?  "Yes you can".  We were ecstatic, shaking his hand and repeatedly saying thanks and I remember telling him he was a healer. We left there on cloud nine, the one below ten and above eight.

As we are walking towards the skywalk to the parking lot we are celebrating and I said again how I wanted to do one of those ads that show actual patients saying, "MD Anderson helped make my Cancer history, Leukemia."  We had talked about it many times. Now I could.  My cancer was gone, history. And then we talked about how Josh had wanted to do that, to do one one those ads, MD Anderson helped make my cancer history, Thymic Cancer  . And he couldn't. I recall so clearly falling from cloud nine and crashing to the ground in no time flat. This was to be Josh's, not mine and it wasn't fair. I DID NOT DESERVE THIS. Those of you that have read earlier blogs know of my struggle with "survivor's guilt". This hit 10x worse than any time before because my remission was real now. I crashed.  I could not bring myself to tell Isaac, nor my brother Dirk about the news of the remission when they called. I had crashed. I also did not want Lynne to tell any one either. When I went to bed at night I dreamt I was preaching at one of the churches I had served and it was a wonderful worship service and all were celebrating. After I awoke  I started thinking and began to have very bad feelings again about the guilt and began to think there was no way I could get to celebration and all thoughts moved to guilt and Josh was the one that deserved to live, not me. If you recall I was taking Cymbalta, an antidepressant, and a side effect warning is listed as, having suicidal  thoughts or notions. So that next day I discontinued that medicine along with the sleep aid. My appetite dropped and I was listless. The next night I had another dream and again I was guest preaching at one of the churches I had pastored. During the sermon I told the story of  the cancer  and the remission and we had more cheering  arms raised in that sanctuary than at a Texans' football game in Reliant Stadium. In the morning I was nauseous and still crashed. I could celebrate in my dreams  but not during consciousness. I began to vomit two to three times a day, no appetite and really down. Finally Lynne told Isaac and we talked and I have promised to seek professional help within the next week. The other thing that was going on is the itching was getting worse along with the stomach problems. We finally got into the Clinic on Thursday. Yvonne the Physician's Assistant concluded that the reduction of the steroids last week has allowed the GraftvsHost Disease to emerge and thus the itching and the rash and the stomach problems and all was the result of the reduction of steroids at the last visit. She ordered an increase in the steroids even higher than the earlier prescription for awhile. It was amazing, the itching stopped, the vomiting stopped and at 4am I had scrambled eggs with brisket and sausage. I'm beginning to get strength back. There is a consult with psychiatry next Tuesday on the schedule. It seems this story is not finished yet but I will publish what's here. Unraveling all this has been a nightmarish challenge.

Hi Y'all

It's time isn't, for an update that is. I am beginning to make head way again. I have been gaining some weight again, up to 153. The blood counts are holding steady. The CT scan was clear. Today I have the Bone Marrow Biopsy and will get the results next week. This is the 6 month mark after the transplant. This last stay in the hospital left me feeling weak and I'm doing both occupational and physical therapy to counter that. Appetite is slow to return. I'm still working on the support. Some of this feels like after the SCT, maybe not that bad but it felt like starting over. As far as the Transplant is concerned it is still okay, it's just going to take some time. On Wed I had trouble keeping food down. Patience is what it's taking now. Each month it is a little better like watching  grass grow.

Update

I was discharged on Tuesday and instructed to monitor everything closely and if fever should reappear, back to the ER. I had blood work done on Wed. and the scores were great. While in the hospital for 8 days ,I had IV antibiotics, 3 neupogen shots to stimulate the production of stem cells, and 4 IV's of immunoglobulin over 4 days to shore up the antibodies. The net result, the infection seems to be gone, and no temperature for several days. I lost upwards to 23 lbs and the appetite is still not back. They have included an antidepressant to help cope with mood and a sleep aid to get rest and physical therapy for rehab and we will seek out a support group to help me get over this. It is quite a wake up call. We will keep you posted and thanks for all the support and prayers.

Back To Good News

It is 10:30 am and the Dr. said I can go home. What a relief!

I Got Knocked Down

It seems like it should be different. It should look a whole lot rosier, but it is not. I have totally lost my appetite.  I have lost 20 pounds in the last 3 weeks.There is just no hunger. I also cannot sleep. I have used sleep aids for 3 nights now.  One night it never phased me . Last night they switched  to another brand and I did get some deep sleep for about 3 hours. I have been having headaches and at 4 this morning I had to take something for it, it was so bad. I am scheduled for my last of 4 immunoglobuulin infusions today. I have no temperature, but still have a runny nose and a cough. The neutrophil count is still low despite 3 neupogen shots. They hope it is all headed towards my system handling it with all these boosters. I got to tell you it doesn't feel that way. The doctors have assured me the stem cell transplant is doing well. So why am I so down? I should be celebrating new life. As I thought about  all of this the other day I began to think of Josh. Remember his line?

I get knocked down, but I get up again
You're never gonna keep me down

 It was his mantra. The gift of life should have been his and not mine. I thought I had cone to terms with this survivors guilt, and yet it all seems to fit that I don't deserve this chance. And it all gets pretty raw. Rationally I know I do not need to feel this way. I also am not a totally rational being and it is amazing how deep the feelings and emotions can control behavior. Weight lose, appetite lose, insomnia, an infection, despondence ,severe headaches - it's time to get some emotional support. Isaac has been pushing for that for some time and Lynne agrees  that I get some help in this area. If I were to look at myself as though it were a case study, it's a no-brainer. I tend to want to handle it myself. So Josh's mantra has a lot to commend itself to me, to get up, to keep going .

This blog has been several days in the making. I came into the hospital on Aug. 21st. Today is the 28th. Maybe today. Maybe tomorrow. It has been a long haul.  "It's time to get up again". Lynne has spent her birthday here at MD Anderson the last 3 years, once with Josh and  now 2 years with me. It's time to change this.

Bad News - Good News - Bad News

In the last blog I wrote that was struggling to fight off this cold or flu. Well, Tuesday the temp began to go up and about noon and one o'clock it hit the 100.5. So I called Isaac and I started packing. I am again a patient at MD Anderson. The lungs are clear. Tests have been taken. Blood samples drawn and the neutrophil count is extremely low, they are those first responders in there to defend when an infection sets in. There is not enough of 'em, just not enough. So here I am in the hospital, IV pole is crowded, and "Mash" is on TV.
I had so hoped for better. Maybe this will be the last time.

Bad News - Good News

It's the bad news - good news story. Let me explain.
It started about 10 days ago, a little sniffle, a slight runny nose, nothing more, no elevated temps, probably allergies, take some Claritin. It didn't help and persisted for 4 to 5 days and I had an appointment so they ran all the tests and put me on Tamaflu and Levaquin and see you in a week. After that I had some reactions to the Levaquin and got that settled. Then I began to have some temperature rises. The last thing Dr. Khouri said to me in the office was, "If you get a temp. Go to the ER"! For me that is 100.5. I am still immune suppressed and it is always a question of "How much can I handle?" For the last 6 days I have been taking my temp frequently, watching it go up and down. I has been at 100 on at least 2 occasions. Yesterday it was 98.7, last night 99 and this morning back to 98.6. Isaac has been listening to the lungs and they have stayed clear. Pneumonia is one of my biggest threats. Isaac put it into perspective. "Any other time you would have been in the hospital and this is a big step that you have held your own." I DO SO NOT WANT TO GO TO THE HOSPITAL I have another appointment tomorrow and will get an infusion of Pentamidine to prevent pneumonia. Sometimes I have forgotten how vulnerable I am because I have done so well. This is a reality check and with flu season coming I have had to renew my diligence to caution and not become careless. In Sept. I will have the 6 month post transplant tests and should reveal how the transplant is functioning and being able to produce the cells to fight infections and all the assaults to which we are all subject. You have an immune system, mine is still compromised and getting stronger. To have handled this seems to indicate it is getting stronger. I guess since the temps have gone down I am starting to exhale and celebrating Isaac's assessment that it is all working like it was planned. The bad news - I am sick. The good news - I'm handling it so far.

You Pretend Too,Don't You?

The plans have been set. The reservations are complete. We will have a private room. We have requested room service from their exclusive menu, choosing the most exquisite of all they offer. This you see, is our anniversary and to be celebrated in style. All of this has been reserved for us at Chez MD Anderson (if you put a French twist to Anderson it has some pizazz). Of course we are pretending. I do, though, have an all day event at MD Anderson, which includes the customary blood work, meeting with the nurse and then with the Dr. in his customary white tuxs and also a 6 hr infusion of their finest antibiotic, Pentamidine, all of it on our anniversary this week. Whoopee! Pretending can be good though, can't it?

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.

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!

Upped The Dose

I've upped the dose to 2 verses 2 x a day.

Take 2 Verses Daily

On Friday I had an infusion for the Magnesium again and a visit with the Nurse Practioner and the Pharmacist since Dr. Khouri was out of town. We reviewed the ER incident and it was decided that since there were no repeats of the uncontrolled pain in the back that we would leave everything alone for now. Any kinds of surgical procedures are out of the question at least during the first 100 days. We are not completely sure what caused the pain, however there are some new spinal issues that warrent some looking into in the future. For now the Stem Cell Transplant is the focus and that is coming along well. All of the treatments do interact though and the bones have taken a beating from the chemo, steriods and all the other medications (about 20 pills every day), and that does not take into account how the leukemia has affected the bone marrow and the strength of the bones during this time. I will have a follow up with the Endocrinologist in a few weeks and she will do some more bone density testing. She did this earlier so she has a base line for comparison. She had said I did not have osteoperosis, however that word was used this past week more than once.

So some of this feels like a bit of a let down. I had hoped these type of complications would not raise their ugly heads. They are cited in the studies, though, as things that do show up and do make it harder for patients to have successful transplants. My atrial fibrulation has already played a part on 2 occassions and my history of ulcers is always a risk with the graft vs host often targeting the gut as well as tolerating all the meds. I have had to, on several occassions, remind myself that they are the secondary issues and the Transplant is primary. And that has meant doing the best I can do to minimize the secondary and give room for the primary to take place. As to that we are still on track and that is encouraging. The last time in there were no modifications on the meds. There are only 2 infusions on the calender for next week, compared to daily ones a couple of weeks ago. The blood counts are not yet where they could be because of one anti viral medication I was on. It has since been stopped and the counts are beginning to rebound. Lynne and I were talking about how exhausted we were and rest does not come easy when questions are unanswered. Physical fatigue I like and the work and rest cycle, I do well at that. This, though, with this I do not do as well and sleep and thinking don't mix.


Cast “all your care upon Him, for He cares for you” (1 Peter 5:7).

Jesus said: “Come to Me, all you who labor and are heavy laden, and I will give you rest” (Matthew 11:28).
So I will take 2 verses with my morning coffee and enjoy this Saturday with temps about 75 and a Chamber of Commerce Day.

E R And Pain That Goes Bump In The Night And Into The Day

It started on Wed. night, the pain did. I took a half a pain pill, narcotic, and I don't like taking narcotic meds because of the nausea I feel. The pain was worse than I had felt for a long time and it was in the lower back. It had also moved laterally to  the hips as well and down to the knees. It seemed to start from the point of the Bone Marrow biopsy location in the back to the right of the spine, in the hip. By 3 am it was worse and I took an additional pill and at 6 am I took another half and the pain spikes were still shooting up to a 10 out of 10 pain level. It was not working and I was having trouble just getting around. There was no position that was comfortable. I woke Lynne up and woke Isaac up and it was decided we would need to go to MDA E.R. since we were not sure where this pain was coming from. So Lynne and I headed for the E.R. and got there about 8:30 and the place was empty. I thought to myself that should mean we get seen and get some answers fairly quickly. Not so, Oh so not so. I think by 10:30 or 11 we were seen by Dr. Davies and got some IV pain meds. He ordered an MRI since the previous CT scans were clear. It took until 3:30 before I got to the MRI  and they have 13 of the  MRI machines and it took 'til  almost 6:00 to get the results. When Dr. Davies came in with the results he wanted to admit me to the hospital. He said there had been additional damage to the vertebrae and that the area around the spinal column was narrower at the base and more damage could result. He also ordered a consult from Neurosurgery and from Chronic Pain Service. Neuro made it and did not concur on fresh injury and suggested these were old injuries and consistent with back problems I had had for some time and at this point would not recommend surgery. Dr. Davies was recommending the Kyphoplasty for treatment and that is the same back surgery that I had for the 3 fractures I had a year ago Feb. This surgery has since been questionable and according to one report Medicare would no longer cover it. It also did not seem to have benefited me for the other injuries. Chronic Pain Service could not make it and would see me in the hospital tomorrow. So we are left with a choice and when we had talked it over we were questioning why it would mean an admission and why not manage this from home and I really wanted to pass this by my Stem Cell Transplant team first especially the notion of surgery at this stage of the post transplant. So we chose not to be admitted and manage this from home. It did not seem to sit well with Dr. Davies. At 8:30 we were released, 12 hours after getting there. It puts a new face on Emergency Medicine. I was telling Lynne that at each step it was leaving us feeling frustrated and finally angry when we left because that choice was a difficult one to make and the Dr. seemed to have a great deal invested in having us do what he wanted us to do and when I asked him what advantage there was to being admitted his answer had to do with, if we were in an auto accident it could be serious and I would be safer in the hospital. I could not make that same connection and anything could happen in the hospital as well and I would not feel safer in the hospital

So we are at home and the issue of pain and what to do about it will come up today as we try to unravel this. I have not had any additional pain meds and I also have no more of that sharp pain. It has  not returned. Isaac is of the opinion that the issue of graft vs host plays into this as well and that needs to be addressed with Dr. Khouri's team. So Thursday I will manage this from home and keep you posted as we go along.

And the Dr. Said......

Dr. Khouri came into the room and we were awaiting the results of some blood work and the results of the Pet and Cat Scans and the Bone Marrow Biopsy after the 30 days evaluation. Most immediate on Lynne's and my mind was the fact the white blood cell count had dropped as well as the neutrophil count. In the discussion he said that was mainly due to medications so they were discontinuing the Bactrim and cutting the Vacyte in half and reducing the steroids again and increasing the Tacrolimus and the Magnesium and they would give me a neupogen shot to replenish the counts. And to top it off we did not need to come in over the weekend for infusions. We had some questions and then he turned to leave. We, as well as he, had totally forgot to talk about the results of the 30 day tests. Within a minute or so he came back and he had the Cheshire Cat grin on his face and the Dr. said.... 100% of my T-cells were donor cells and 73% of the monocytes were donor cells and the bone marrow was neg for new cancer cells. This was excellent. Also the scans showed nothing new to be concerned about and  everything looked good. Dr. Khouri is a scientist first and foremost and not given to much personal reaction but you could see he was very happy, as were we, with these results and his  reentry into the room with his grin was worth it. This was another indication the SCT  had grafted and was taking over and replacing my blood as they had planned. Some more tweaking and adjusting and the next tests will be at 60 days to check again.

So I am at home Sat. and Sun. and we are celebrating. Saturday is my 65th birth date and what also is  a celebration is that the date of the Stem Cell Transplant on March 8 is seen as a birth date as well in the course of my life now. Two Birth Dates!! What a life!!! Hallelujah!!!

The New Normal

All through our lives, all of us make adjustments to new things in our lives, from before we even were conscious of making adaptations. It could be just about anything, like a new place to live, an awareness of the seasons, incorporating another sibling into the fold, or a going to school for the first time. We move in and out of these constantly and we adjust for the most part mainly because we must. Sometimes we do it under protest and duress and other times we embrace it with open arms. Some adjustments are pleasant and some are very painful. I am convinced that human beings are the most adaptive of all the creatures on the face of the earth. We can live in so many different environments and cultures and under so many different circumstances and we can adapt.

Last night Lynne and I were talking about how things are now. We have been through a lot and we adapted. and the phrase came up, "The new normal". For now we are home again. It is so different from any thing I had pictured a few years ago. Some of the wrinkles in this new normal are in a constant state of flux with each passing day and that has been our "new normal", the constant change. Routine takes care of a lot of things for us in day to day like. We have not, nor are we likely to have, a predictable routine for the next 6 months. Each day revolves around the treatment of my cancer and the care of the SCT. Even on Easter I had to come to the clinic to have an infusion. We are both getting a little tattered, at times, around the edges. And there are no breaks. There is perhaps a little relaxing of the intensity at times but even that is fragile. Last night I told Lynne I'm not doing very well. She quickly sat up and said, "What's wrong?" with apprehension on her face fearful of a trip to the ER. We've been there before. My not doing well had more to do with something else and I was okay. The "new normal" is fragile and we know it. Being at a constant state of readiness is exhausting on both Lynne and I. CANCER CHANGES EVERYTHING. And we are adapting, some days better than others.

April 7, T - Plus 30

T-Plus 30 is another hurdle that we have cleared. I have come to the clinic by myself now for the second day. Saturday traffic is such a different animal. The speed limit actually applies and I made it in 35 minutes. This daily stuff is going to go on for 2 weeks at least. The anti fungal meds cost 3000.00 a month through Medicare with a prescription for home or I can come into the hospital and get it in an IV and it comes as a medical clinic treatment and it is covered and I can guarantee you 30 days of IV antibiotics, costs a @!@## more than  the 3000.00 for a home prescription. It defies logic.  Well I've got more time than money so I will do the trips. These daily trips will probably take up at least half my day if not more. I'm guessing that at this stage of my transition it's going to be similar to watching grass grow. It will be grow. It will be slow. I won't notice much change from day to day And before I know it 6 months will have passed and then a year. It's another good day.

Shifting Gears

As I said in the last blog, I am beginning to look farther ahead to the longer range. We just finished the tests for the checking how the transplant is doing at about the 30 day stage. These results should be in next Tuesday or Wednesday. This will let us really get a glimpse of how I am progressing. And about day 100 we will repeat that. With all the tests in place we wait for the results. Dr. Khouri was just in and he's lowing the steroids to 3 a day, switching fungal meds and raising the Tacrolimus again. The adjusting and tweaking continues. I am also able to go to the clinic by myself now and that should take a load off Lynne's shoulders and give her some freedom. Dr. Khouri also said we do not need to keep the apt. any longer and can go back to our house again and commute to the clinic as needed.

It would make sense for me to make shifts in my life patterns rather that frustrate myself. So Dr. Khouri said I can do some painting projects and I've got plenty of little ones of those that keeps me out of the sun and indoors. I will miss the outdoors though and will find ways to cope with that as we go. As of yet I don't have that much energy yet and rest is still very necessary. Someone suggested career change. I've done that 3 X already. As for now I am not looking to doing that again. Retired is closer to what I'm looking at. So for at least this year my focus has to be on recuperating since that is still a transition time for Transplant patients. At 6 months supposedly I should have the blood of my donor. And there are still risk factors for graft vs host that need to be monitored closely. So yes, I am looking ahead much further than I was a few weeks ago and that is a shifting to another gear. It's a new day and it is very good.

So How's It Going? GREAT!

It is Thursday and the schedule feels more like what I had before the SCT. I'm sitting in waiting rooms, waiting for tests and such. My health feels comparable to a couple of months before the transplant except for my body strength, especially in the legs. Going up stairs gets me. I keep walking and moving and I figure in time that too will come back. Today I get a Cat Scan and tomorrow a Pet Scan and Bone Marrow biopsy and aspiration. I have been given permission to drive and that's a nice letting out of the leash. The other big change has been that I am on Medicare now so some procedures will change. For example Dr. Khouri wanted to send me home with Home Health Care for the magnesium infusions. Medicare says that needs to be done in the hospital so that means continued daily trips to the Clinic.

So we move on and it is still at a rate I had not expected and that I'll take. I actually find myself imagining what everything will feel like in a few months and it's like this could turn back the clock on my health a bit. I find myself beginning to plan things and wanting to do things that I had put on hold and even out of my mind, and I get excited. I know that there will be new issues I will have to monitor and about which I will need to be vigilant or they could put me at serious risk very quickly and that certainly highlights the word Chronic in Chronic Lymphocytic Leukemia. With good management this can work. It really, actually can.

T - Pus 26, April 3

The routine is beginning to shift. I will continue to need the IV's for magnesium but they are starting to shift to oral meds for that, if I can tolerate the dosage. I am on 2 a day and they are looking at 15 perhaps as long as I am on Tacrolimus. They have still been adjusting that one as well since I am not showing enough of Tacro in my blood. Every 4 days I will increase the Mag. The other Meds are looking ok. Hopefully we will only have to go in 2 to 3 days for these maintenance visits. I am scheduled for a Pet Scan, a Cat Scan,  and a bone marrow biopsy for Thur. and Fri. and 2nd bone marrow on the following Wed. These will give a window at how the Stem Cell Graft has taken up home around the day Plus 30.
They have been very considerate about letting us come home and we hope that continues. We have the apt for another 2 weeks and then I think that will not be necessary any longer if recovery continues as it has. Originally we had been told to be ready to stay there through the middle of June. It is good to be home. Several of the restrictions now include, I must stay out of the sun or wear clothing to cover and spf 50 sun screen. Sun exposure can set off the graft vs host. Also I must watch out for fungus and earth bore bacteria so I wear a mask much of the time out doors. I am trying to settle in for the long haul and begin to make these routines a matter of automatic behavior. It does not come easily. I do however, feel much better and continue to improvre daily. We are so thankful and appreciate all the support and prayers. Keep 'em comin'.

Waves of Grief

There is the big one, that one way out there.                                                                                           It's coming with foam and a crest in the air.                               
Kate's ready to paddle, she's ready to float.                             
Watch it carry her just like a boat.                                 
                                                                                              
And we do it again as the next one comes falling,                          
And Ethan's got that wave, the next one Llew's calling.      
It goes on all day in the primordial glee,
As folks of all ages are washed by the sea.

Then tired and tuckered we think we are done,
And somebody yells, "There's the big one!"
And every one turns and runs to the foam,
Convinced and expecting to ride this one home.

For years it has happened with exuberant excitement.
Our family would gather for a weekend of delightment,
At Galveston's beaches immersed in the wave,
Catching the next one, the big one, by the brave.

Forever, yes forever, we thought it would last,
Gathering each year for our annual blast,
Immersed in the moment of the tide we are crashing.
Immersed in the swell of eternity splashing.

Bathed in the foam, the seaweed and the sand,
Getting bit by a fish on the leg or the hand,
Walking the beach looking for shells,
And even the savoring of Galveston smells.

Every roll of the  deep had a mystical potion,.
A bathing our souls with a heavenly lotion
The lapping of water, the sun and the sand,
Burning off all the tensions leaving them banned.

Then Cancer, then doctors, and the flames they exploded!
The forever had been wrinkled and the peace had imploded.
And reeling and stumbling we marched to the beach.
If we could freeze time we could freeze cancer's reach.

And  as pilgrims we were, we continued the quest,
For that year with Josh we all brought our best.
We put on brave hearts and screwed up our courage,
Trying so hard our faith to encourage.

And that year we washed in the sea and the shore,
Three sons and their families for one last wave roar.
It was brief, it was silent, it was loud with devotion,
Filling raw wounds with salt from the ocean.

With peace on earth shattered and prayers left so blank,
The Cancer waves crashed,  to the bottom we sank.
This storm we were riding was sinking our notions,
Of eternal waves washing with heavenly potions.

Tradition? Can we keep it without Josh, without him?
Can we celebrate there again after Cancer's cruel dim?
With holes in our hearts and blurred still with tears,
We strained through the fog to Galveston's piers.

It was scary. It was painful. It was devoid of  all lotions.
It burned like the sun, it seared our emotions.
The water didn't wash and it stung with the  sand.
The waves forgot to play as they rushed to the land.

We met and we wrestled with so many a new feeling,
That swamped us and stung us like star fish a reeling.
And on our way home I knew we weren't done.
The quest was a long one, we'd only begun.

The quest of the pilgrim suits us quite well,
Looking for peace in the midst of the swell.
Beatitude seekers making sense of this world,
Clasping for peace as each wave  unfurled.



The yearning to return for our holy tradition,
Lies deep in my chest as a personal mission,
To keep family together in remembrance alive,
And make sense of the fact that I did survive.

I begged and I bargained, he and I could trade spaces.
No justice seemed served if we stayed our places.
The sadness continues that I stand to live,
After cancer took Josh and I've days to give.





There is the big one, that one way out there.
It's coming with foam and a crest in the air.........


                     
                                                    
                                                    

T - Plus 23, March 31

"It seems surreal", she said. "What does", I asked? "We are sitting on our own couch in our house. It seems so surreal", she said. And I said, "Isn't it wonderful?"  "It is", she  said.

We were given the okay to come home for the weekend and we were home by late Friday afternoon and we actually have nothing on the schedule until Tuesday morning. It has been since March 1st and even more importantly that 31 days had been filled with everything. Now for these few days, a daily 2 hour infusion at home and that is it for the day, for 3 days. Surreal is a good word.

T - plus 22, Mar. 30

I had my IV treatment at the hospital and saw Dr. Khouri this morning. The blood counts continue to hold strong. They have lowered one antibiotic and eliminated another and lowered the steroid one more notch. I am still low on the amount of anti rejection medicine, Tacrotimus, so it has been raised again. some continued tweaking and adjusting. He also gave a nod to allow a visit home over the weekend since traffic is lighter on the weekends and in case of emergency we are close enough to the hospital. It has been two days shy of a month that I left to head down this road. We will see how it goes. We are still at the hermit stage of staying clear of folks so no visitors please. We'll keep you posted. In the meantime we are celebrating the time at home. Hallelujah! We will still be keeping the apt for 2 more weeks since there is still a short term need for that. Then I think Dr. Khouri will approve our move back home.

T - Plus 21, Mar. 29

It's 3 weeks now since the transplant. During the night last night my blood clot came back so I am back on the heparin and probably will be for awhile now. Everything else is the same and so we keep going. They are gradually shifting me to oral magnesium to free me from the IV treatments. The Tacrolimus I'm on depletes the supply. This transition will allow me to move to a longer leash. Beginning next week they will start a series of 3 each of CT scan, PET scan, and bone marrow biopsy to monitor the progression of the transplant and how well it has grafted. That starts at about 30 days, the next mile stone.

T - Plus 20, Mar. 28

It is Wednesday and one of my worst fears have come to pass.  I'm bored! I did not have to go to the hospital and had my treatment at the apt. Then I had nothing else to do. I'm Bored. It's wonderful. I'll take it.

T - Plus 19, March 27

I have been out of the hospital for a week now. It has felt good. This has been amazingly smooth, all things considered as I listen to the  stories of other people. I have not needed any blood products, or neupogen shots. In fact I don't think I have lost more than 2 strands of hair so far and I was telling Lynne I need a hair cut. It's amazing what one can be thankful for. Today  I had my blood tests and results were good. The Potassium levels are back in range, I am off the heparin shots, and they have reduced the steroids from 8 to 5 pills a day. Also they taught Lynne how to do the magnesium infusion today (she did it like a pro) so we do not have to go into the clinic on Wed. or Sat. or Sun. and we will have some flexibility of space and time. It will have been 4 weeks since I have left home. I can't remember the last time I was ever away from home that long before. Saturday, hopefully we'll break that drought. The leash is getting a little longer.

When I was sick...

How things have changed. Ed, a Stem Cell Transplant recipient, some 60 days out tells the story of how he thought he would let his old friend come over to see him at home. He did the necessary asking about illness and said to his friend to come by. As they were visiting his friend shares the story of how he had recently visited another family in the hospital or their home and he found out they had TB. Poor Ed did not know what to do. He had invited someone to see him who had been exposed to TB. SCT recipients are first of all immunosuppressed, meaning we are susceptible to just about everything with little defense against what is out there. Secondly as the transplant progresses we lose all of our immunities we were given with inoculations and shots during childhood and later. By 1oo days or so we have to be re vaccinated for all of these. Ed was just beyond the 60 days. Ed thought he had covered all the bases. He was angry at his friend. I hope he is okay.

My reason for telling this story is there is a tension that is going to exist for awhile for all of you and for me. If you grew up in the church or are involved in a church this is where you learned it is good to go visit and say "hi" to the sick and the shut-ins. This is the place where people are more prone to hug one other and embrace several people over the period of a Sunday Morning or social gathering. It is one of the last place SCT recipients should go and conversely a hot spot for the spread of anything like colds, flues, viruses and yes TB. And then with holy and good intentions, of course you want to go to visit the sick, the shut-in and pass on the goodness of the holy gathering. Bless you for that. You certainly have Jesus' blessing.

So here is the tension. I, like Ed, must look out for myself. That means I must look upon all of you as possible carriers of even rare TB. It feels to me like I am being rude and offensive when I ask to be kept at a distance. I could even appear judgemental. I ask your patience on this. For at least the first six months I must look out for this myself. That will mean I will often be wearing a mask and perhaps sometimes gloves. I will stand back like I am the one with the disease to spare you the responsibility, for it is up to me and you have no way of knowing everything about the health of everyone with whom you have been in touch. Do you recall those "Perfect Attendance Badges" they gave out in school? There is another medical model that says if you are sick, stay away from others. There are not to many rewards or badges for that, but taking your flu or cold to work, or school or to others, or others in large groups also needs to be to be looked at, as possibly dangerous to others as well and not necessarily virtuous.

So I had to put this out there because in a few weeks I will probably be home and these issues will come up. I continue to covet your prayers and support and as the boundaries become more flexible I will let you know and we can reconnect.

T - Plus 17&18, March 25&26

Sunday went smoothly and Anna was a big help and Lynne had a good time with the grand kids. Thanks everyone. Monday I was in for my infusions. Blood tests showed I'm a little low on Tacrolimus, the anti rejection medication, so they increased it. They have reduced the oral steroids as well as the steroid cream. I also have retained too much potassium and they medicated to reduce that. Tweak, adjust, and retest and do it again. The other blood counts have come back very well though, some counts I haven't seen in some time. The best news is we can go home for the weekend if all holds strong. We'll take it.

T - Plus 16, Mar. 24th

Sat. went well and a pretty close copy of Friday. Anna and family came down from Dallas  and Lynne went with the kids to our place and Anna is staying with me through Sunday afternoon. I still feel a great deal of fatigue and sleep a lot. My appetite is coming back now and the taste buds as well. All in all, it looks like, stay the course. I'll take it, one more day.

T - Plus 15 Mar. 23 After Transplant

Friday went very smoothly. I had an IV treatment at the clinic for magnesium supplement and by 1:00 we are done. Dr. Khouri came by and every thing looks good on the blood counts and the rash is diminishing  some. I was low on the Tacrolimus,  the meds to control graft vs host so they raised that and lowered the steroid dosage for the rash. So some tweaking and adjusting as we go is what I can expect more of over the next week or so. Meanwhile the real work is being done inside me, especially in the blood. I am working at focusing on diet and exercise now with Isaac's assistance and insistence. It's another good day in my neighborhood and I hope all is well in yours.

T -Plus 14 March 22nd

Today is the first day of...........So begins many a story we've all heard in our time. Today is the first day of  school, new job, new place, and you name it. Probably up there in the top ten though you would have to include, "this is the first day of the rest of your life". It's something of a cliche, I suppose, but the other day it took on fresh meaning for me. You see, when I first was told I had the big "C", I have lived under some kind of a cloud that cast long shadows into the future. I was stunned and in denial. I was sifting through, all so many stories of others including our son's, and the shadows were dark. Then the other day when I received the Stem Cell Donation, other patients and staff on the hospital wing wished me "Happy Birthday"! It took me totally by surprise. TODAY IS THE FIRST DAY OF THE REST OF MY LIFE! And the feeling was repeated when we left the hospital and drove to the apartment. There was a world out there. It was like I had been driving down a road and there is a big tunnel ahead and so all the focus has been on that tunnel and I can not see the other end and going into the hospital was like entering that tunnel and we keep going knowing the path we must take and then, when discharged from the hospital and feeling so, so much better, coming out of that tunnel and seeing that there is, there really is a whole new world from where I am sitting.  Again, TODAY IS THE FIRST DAY OF THE REST OF MY LIFE.                                                                                        

3And God said, “Let there be light,” and there was light. 4God saw that the light was good, and he separated the light from the darkness. 5God called the light “day,” and the darkness he called “night.” And there was evening, and there was morning—the first day of.....................

T - Plus 13 After Transplant, March 21st

It was a hectic day since everything changes again. We are at the apt and now I go to the hospital for treatment. So early in the am I have blood work done and that gives them a window to how I am doing. They will make adjustments on meds and give me IV fluids with supplements as needed like mag. or potassium since I keep losing those. At this point I have not needed any blood or platelets or neupogen shots and the counts are holding and even getting stronger. This daily clinic visit will continue at least through the 28th and more likely longer and then go to perhaps 3x a week. I am feeling much better, actually, than I expected to at this point. The nausea is gone, my appetite is returning especially the task buds, and it is easier to get exercise here than at the hospital. I have not had fever in a few days and there is only a rash that I'm having to deal with, They have done a biopsy of it and the preliminary results are inconclusive as to whether it is graft vs host disease or a drug reaction. For now it is being treated as graft vs host to be on the safe side which includes more steroids. These are not my favorite drugs because of long term side effects to bones and organs and such. However these are some of the trades I will make to keep moving. So we move on.

Tomorrow morning Chris goes back to Tacoma after 3 weeks here. It was a good reconnect. He was able to spend time with both Lynne and I and that has been unique and a special time that  I will cherish . Thanks Chris, we love ya!

T- Plus 12, March 20

So the reason for the "T - Plus" count is this. Transplant day is "0" and "10" is usually when the graft has established in the marrow and begun to produce blood. That is all on schedule. They also look to Day 100 as another marker to pass showing the transplant is functioning well and graft vs host is under control. So we are shooting for T- Plus 100.

I was discharged from the hospital and we are staying in an apt for a month or so depending how things go. For at least a week to 2 weeks I will come in for infusions on a daily basis and blood draws and monitoring and that will take pretty much the morning plus more if something comes up. I'm feeling well and it looks like the graft is taking. As we all know anything can happen as we go along so we are very mindful of being cautious. This post is a little late and will try to update tonight again.

T- Plus 11 - A Good Day Mar. 19

No new fevers but the rash continues and a culture is pending, perhaps some graft vs host disease, and I'm back on steroids. All else is looking good  and Tues. looks like discharge day. Lynne and Chris set up with the apt. and that will be our residence for at least a few weeks as this place is close to the hospital. I will have to be at the clinic daily for at least 2 weeks being monitored and given IV's and such. So far it feels like things have moved quickly. They also feel like each challenge has been met and we are gaining some strength  and that is going to be the next hurdle to staying healthy. And there was evening and morning and it was a good night.

T - Plus 10 After Transplant Mar. 18

Somewhere around 3:30 to 4 am I  began to feel chilled and began to shiver.The thermometer confirmed a fever spike. So for the next 6 hours Tylenol and steroids. They will continue the steroids through tomorrow to control the temp and also a rash I have developed. The why? They don't know for sure yet. It's what happens in transplants. They are running cultures and we'll know more tomorrow. By 9 at night I feel like I've regained some of of the improvement  I had felt the day before. As I post this I have had a good night. I am going to be on steroids yet and will have to wait a little longer about discharge,

T- Plus 9 - Tempus Fugit And Happy St. Patrick's Day

I got some solid sleep without interuptions for at least 5 hours last night. It felt wonderful. There were no new incidences during the night and 2 more IV lines came down. I am down to one line only for saline hydration. All IV antibiotics are being switched to oral even the anti rejection medication tacrolimus, all in preparation for a possible discharge on Monday. Tempus Fugit. I was stunned a week or so ago when Dr. Khouri said to shoot for Mar 21. That was only 3 weeks and now he is saying even earlier. Then through the help of some friends at Advent Presbyterian we have located housing close to the med center in an apt managed by Grace Presbyterian and we will need to stay there for up to 2 months. The time in traffic that it takes to get from our house to the hospital is not going to work since we need to be able to get there within 15 to 20 min. in case of emergency. Today should be just a rest, exercise and recuperate day. So barring any surprises I can just watch some BB.

T - Plus 7&8

I have been running a low grade fever for a couple of days and then this morning(Fri) it spiked to about 103. They don't know for sure why. The Dr. thought it might be a reaction to the antibiotic I was on so they discontinued it and started me on another. The scheduled infusion of Retuxan was delayed by a couple of hours but not postponed. So some adjusting here and there and we are back on schedule. The fever has been gone now for a few hours and the Retusan is about over. One of the reasons for the fever being controlled is the use of steroids and they do not like to use it if they don't have to because  the stem cells may not be fully grafted yet. Hopefully the antibiotic will manage that now. All together it's a winner.

T - Plus 6

Over night was uneventful. I did the ZZZZZ  PPPPP  ZZZZZ  PPPPP as I do every night hourly. I woke up to the sound of someone coughing in the hallway just outside my door. I made sure it wasn't one of our health care workers for that would make me very anxious. Dr. Khouri made rounds and when I asked him about discharge time he's still shooting for the 21st of Mar. During the night I ran a low grade fever and they are trying to track it down. It is exhausting.

T - Plus 5 After Transplant

It is day 5. Every thing is on track and all problems encountered have been handled and treated. Tired and fatigued is the best description. It's still up every hour all day and night. So it's one foot in front of the other to keep going.

Last Night

After I posted last night I had  a pretty bad case of Atrial Fibrillation (afib), a condition I have had some time. It was being controlled with Metoprolol. One of the other things this medicines does is slow the heart rate and decrease blood pressure. Since those have been low they decreased my medication and last night my heart went into afib worse than it ever has and it took about 6 to 7 hours to finally get it settled down. This morning it is stable but they are still holding back on the meds until a cardiologist does a consult. I knew going into this SCT that might become a factor and it has. Another risk factor I have is a history of ulcers, and bleeding is an issue for transplant patients.  This is Day 5 after transplant and to date I have not seen any graft vs host disease and I know there will be some of that yet as well.

T - Plus 4 After Transplant

This is probably what I can expect for a few days. The head hurts, I have chemo fog, no appetite, fatigue, nausea, and an overall generally feeling like crape. Even typing this is a chore. I am encouraged by my family being here and their push to exercise keeps me moving. I CAN DO THIS.

T - Plus 3 Post Transplant

Today was a dreary day and like yesterday we got a goodly amount of rain. For us here in the Houston area, I believe the drought is over. Inside the walls of the hospital it was a good day for me. I had the ultrasound done of my leg and it is superficial thrombosis or thrombophlebitis and will probably not require any attention other than observation. Chris came and spent the afternoon and we took a couple of walks. It's getting harder to eat since the gag reflex is so strong. My energy level is also dropping a fare bit. So another walk tonight and an effort to eat and that will make day 3. It's a long road yet.

At 5:30 AM, T-Plus 2

I had been up for awhile so I took a walk. I was sitting in the family area and I saw him come off the elevator. One  look at his face and I knew something was not right. He was in a hurry and he averted eye contact even though we had spoken before. Later I found out that his son was unresponsive and was being transferred to an ICU. I went back to my room and wept for him. And I wept for myself. This young man was a 3 year survivor of the SCT and complications even now plagued him. So also I wept for the father for I too have watched a son struggle with cancer and I wept for myself because that could be me some day with complications. It was a rocky start to what I had hoped would be an uneventful Saturday. Lynne came and spent the day and that helped a lot. Someone saw her Un. of Mich. shirt and introduced herself. She apparently works there. It's a small world. They are here to visit their daughter who is a 7 year SCT survivor and wile here developed and e coli infection and that set off the graft vs  host disease. There will  always be need for vigilance for the rest of my life. Now every ache or pain or rash or sore will be scrutinized. Nothing can be minimized like we were taught to shake it off and move on. So in that light as I was getting ready for bed I felt a soreness below my knee and I looked closer and it appears a varicose vein is swelling and tomorrow they will ultrasound it. So
with a warm pack on my elevated leg I am going to bed.  That's enough for one day.

T - Plus - 1 After Transplant

I woke up this morning with a flushed feeling and I knew I had the beginnings of some kind of fever. My hunch was a UTI. By 8:00 am I had reached a temperature of 101.1 in a matter of an hour. This is apparently one of the many things that we will encounter as we go along. This is the part of the transplant that I think is going to be the hard part  as we adjust along the way. The next 2 weeks we will be going down hill until the new stem cells establish in the marrow and begin to produce blood. Immune systems will be shot, blood counts low, and no energy. As the day wore on the temp was controlled, antibiotics were given and I got my next round of Retuximab. By the end of the day everything was back on track. I will try to get some rest tonight since the last two nights were not so good. Tomorrow will have it's own challenges I'm sure. Good night and good sleep.

Momentous Momment (Qualifies as an M&M dosen't it Isaac?)

This morning I held in my hand a bag of stem cells for a couple of minutes and held it in the air and asked God to bless them, The Dr. nodded his approval and the signal to  hook up the line.  We watched as the infusion came down the line up to the catheter. Chaplain Dave shared Ps. 8 and a prayer to bless this adventure and opportunity for continued life and for each family member there, Lynne, Chris, Isaac, Katie, and Llew. He praised the donor for his gift. Then somewhere in there before or after a staff member said "Happy Birthday". It was and is GREAT!!!

Katie found some birthday hats and I wore one on our walk which will show up somewhere on Isaac's. Just think. I get 2 birthdays folks.

New International Version (NIV)

Psalm 8

Psalm 8

For the director of music. According to gittith. A psalm of David. ¹ LORD, our Lord,
how majestic is your name in all the earth!
You have set your glory
in the heavens.
² Through the praise of children and infants
you have established a stronghold against your enemies,
to silence the foe and the avenger.
³ When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,
⁴ what is mankind that you are mindful of them,
human beings that you care for them?
⁵ You have made them a little lower than the angels
and crowned them with glory and honor.
⁶ You made them rulers over the works of your hands;
you put everything under their feet:
⁷ all flocks and herds,
and the animals of the wild,
⁸ the birds in the sky,
and the fish in the sea,
all that swim the paths of the seas.
⁹ LORD, our Lord,
how majestic is your name in all the earth!