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.