Written Jan. 15, 2004

Well this may be my last update. Even though I am considered a distance from recovery (another 9 months min. as per last meeting), we have decided for a number of reasons that it is time to stop the updates. If you would like to hear how we are doing, please contact us directly.

We may be reached at t-rexx@sympatico.ca

We have been thinking of a way to Thank all those that have helped and supported me through this journey. There is simply too many people and too many wonderful stories.

We do believe in the keep it simply philosophy; and besides it gets hard to type when I cry, as we go over in my mind all the genuine and sincere help I received. It was truly an awesome experience! The stories I have are a treasure.

I/we hope I/we have learned well, I/we believe I/we have.

We Thank You !

Be gentle

Be gentle on Family

Be gentle on Friends

Be gentle on others

and perhaps most of all

Be gentle on yourself

…dave2588

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin, eyes

Platelets: ** 71 / 73 norm 180 – 400

Liver Enzymes: * ALP/102 AST/27 ; ALT/84

Prednisone: * 12.5mgs. Dropped by 2.5mgs.

PTL

Dave

 

Appointment Dec. 23rd. 2003 – Jan. 06 2004
Written Jan. 06, 2004

Well today’s appointment was much like 2 weeks ago. My results are very much the same. The DR’s are trying to figure out why my liver is not responding as much as anticipated. They are going to do some test for Hepatitis and other liver disease. They are also looking at the possibility of sending me to their liver specialist. I may be looking at getting some biopsy work done on my liver.

The tooth that literally fell apart a few weeks ago and was repaired, once again has fallen apart. The Dentist did say originally this may happen, as there was not much tooth left; originally, this tooth had little actual tooth remaining do to previous dental work. The dentist also said that if it doesn’t hold I will need a crown. I guess I need a crown. Not up to it at the moment, so we will deal with this beast when I am.

I am once again getting tired as the prednisone is reduced.

Yeah, I have been taken off Novasc - blood pressure lowering medication. The DR’s believe this has been causing edema (significant fluid retention) that I have been experiencing since the 24^th of Dec. The result has been my feet and calf area of my legs to swell. My feet were swollen to the point that I had no ankles! I have been coughing up a lot of flem and been dealing with significant congestion in my chest. I have therefore been doing a lot of sitting and lying with my legs elevated (not what we had planned for Christmas celebration) and utilizing the hot tub/sauna to help alleviate some of the swelling and congestion.

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin, eyes

Platelets: ** 71 / 73 norm 180 – 400

Liver Enzymes: * ALP/102 AST/27 ; ALT/84

Prednisone: * 12.5mgs. Dropped by 2.5mgs.

PTL
Dave

 

Appointment Dec 9th., 2003
Written Dec. 12, 2003

Way Cool!  Way Cool!

As you may recall, Phil one of our friends that is running ½ Marathon’s with Tnt in my honour, is currently down in Barbados running. I unfortunately was not allowed to join him, do to current condition (no trips for at least another 3 months). On Sunday past Phil called from Barbados and brought me up to speed on how things were going prior race and post race. Way Cool!! So Phil and I spoke for a while and it was very cool to hear how the event was going. Phil said that there was a number of clinics to prepare the runners for this run, as running in the heat that was expected is very hard on ones body and certain precautions and so forth were necessary. The warm up runs went well, although the mid 30 degree C temperature and heavy air made for slower race times. When the ½ Marathon went off, they started at 5:30 AM! This was obviously to beat the heat. Apparently it was only, I say only (as it is snowing outside here as I write this) 27 degrees C! Well the race took Phil on a course through rural and small towns, through sugar cane fields, along the beach and ended by the ocean.

Phil said it was an amazing run Truly an awe struck life experience!! Phil’s time at the Toronto run was ~ 1:47:00 and in Barbados he managed ~2:05.00. Considering the conditions unfamiliar to him, a super achievement!

Congratulations on an Outstanding Run, Phil!!

Phil did also have the opportunity to run into the ocean after the race……..Way Cool! ( boy am I having fun with this "way cool" thing).

Phil also had a chance to meet many of the other runners; one women from Newmarket , Susan Hays from Global Television among others. Phil summed up the entire event with the words

"What a great bunch of people".

Obviously a good time was had by all.

We are making plans for me to join him next year. I would like to run (perhaps walk) the event myself.

Check-up:

Well, my liver continues to improve and 2 out of the 3 spec’s are back in spec.; albeit still to high

for victory to be hailed! This is of course very good news and I am feeling better. Timing is good with the holiday season upon us. My platelets are not improving and this is a concern to the DR’s, as no one can understand why. They did mention previously and again now that sometimes it takes up to 3 years for these to move into the normal range. So again a patient, patient is required. I am still able to maintain a lower blood sugar than most in this situation. This is done through proper eating and understanding how the varies foods effect my blood sugar and then staying away from the ones that cause elevation. I also use varies foods to lower my blood sugar. This is necessary as prednisone can cause sugar diabetes in patients. This is why I feel it is always important for the patient to understand their part in their healing and do what they can to improve the outcome. I am always on the look out for other methods and techniques to improve my outcome. I must say, it’s not easy, but if I am to expect complete recovery, I must do my part. They are also reducing my prednisone intake by 5mgs. and I see them in two weeks on the 23^rd.

What a difference this December from last.

Last year I was in bed, barely able to move or think. I was not able to go out or participate in any of the season’s activities. Brutal for a family that would normally fully enjoy all this season has to offer.

This Year I have/will been able to:

	help with the gift purchasing
	went to Dave’s Christmas play…….way cool, way cool!
	make varies types of holiday breads and treats
	have plans to go skating (slow as I will go, Go I will)
	have plans to go to, what was an annual event, the live nativity

and Dave sumed up the season with this……..

"Last year we just bought you gifts that help you rest and relive pain – just to live. This year Dad, we are buying you gifts for you to enjoy today and for days to come!! God Bless you Dave and every day of the year……..Dad

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin

Platelets: ** 75 / 75 norm 180 – 400 This leveling out at low levels is a concern

Liver Enzymes: * ALP/74 AST/27 ; ALT/86

Prednisone: * 20mgs. Dropped by 5mgs.

White Cells Continue to do well

List continues to shrink!! PTL

Dave

 

Appointment Nov. 25th, 2003
Written Nov. 27, 2003

Overview:

So another week and another appointment. The results of my liver enzymes are improving, albeit slowly. My other blood results are non-eventful. My eyes continue to be a source of problems as my vision is significantly handicapped because of the prednisone increase and the resulting ocular pressure it puts on the eyes. Unfortunately I have not been able to find any natural method to strengthen the liver as the Graft vs. Host disease (GVHD) continues.

For the last 8 weeks or so I have had a very itchy scalp in and around the crown area. I had always thought that this was dandruff is something along that lines, so I didn’t mention it to anyone. Well, it turns out it is not dandruff but skin GVHD and it is important to mention it.

I guess one never knows.

On a personal side I continue to slide into a frame of mind that I just don’t feel like doing much of anything. I have been for a while now taking my afternoon naps again. This is both necessary but frustrating. I obviously need the rest, however, it feels like time is passing by and I am missing the full experience in life. I have spoken to others at PMH and they experience the same type of feeling. It is a real dichotomy; one doesn’t have any interest to work or at times even be part of life and yet one feels that life is passing one by. If you have no interest in something, then why does one feel that, that same item is passing them by. The only conclusion I suppose is that at some level one is interested, perhaps just doesn’t have the energy to deal with it minute by minute, hour by hour, etc…… It sure does cause some confusion and grieve. I guess it is no different then the inability of some people to understand what it is like to one minute feel like you have engery and desire to say shovel the driveway from snow. Yet no sooner am I finished that then I just want to sit and rest in a chair. Some people venture to say things like; if you can shovel the driveway then you can certainly work or; if you can go shopping you can certainly come and visit with us. Unfortunately one has very little if anything to do with the other. It may sound strange but I can tell you I go and watch Bubba (our son Dave) swim on Thursday. Yet he swims Mon. thru Sat. but yet I find myself able to go and watch him on Thursdays only. Why?

I don’t know. There was a very extended time I didn’t see him swim a practise or in competition for and extended time. Yet if I use the same logic as others do, "if you can do this then you should be able to do that". Well why do I not go any other days of the week. I just can’t. I simply don’t feel able. Isn’t it amazing how a 10 yr. old can understand or at least accept this and yet adults get all caught up in the muck over this. Children are indeed a gift!

And on that note I say until next time…………

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin

Platelets: * 75 / 74 norm 180 - 400

Liver Enzymes: ** ALP/91 AST/38 ; ALT/110

Prednisone: * 25mgs. Remains steady

White Cells Continue to do well

List continues to shrink!! PTL

Dave

 

Appointment Nov. 4th, 2003
Written Nov. 16, 2003

Overview: The DR’s seem encouraged by my response to only 25mgs. of Prednisone. They are keeping me at this level to see if my body and the prednisone will work together at this lower level in supporting the liver. They will see me back in 2 weeks! I like that.

This up and down with the liver and prednisone is a struggle. Add into the equation some of the other things and it has been a tough go for the last month or so. I am beginning to feel physical better and mentally stronger. I believe it is key that went you feel good – feel good. When you feel beaten and bruised – feel beaten and bruised. What comes from this is the understanding that neither condition is forever. I have found however that I definitely have more positive days and at an ever increasing interval. It kinda’ goes along with the theory if you are fearful of something; say doing a presentation in front of superior – feel the fear and do it the best you can.

You are therefore, forever true to yourself and for that alone, an individual can be pleased.

I believe the body knows exactly what it needs to heal and tells us many times. The problem is whether we are prepared to receive the message.

Some have ask me if I believe in Natural medicine or Western medicine. I believe in both. I believe that if you have the runway it is more preferable to use natural method. There are of course those times when very an aggressive approach is required. The ultimate in my book says "lets use the two methods commingled" if you will.

The sad part to the story is that neither side wants to recognize the other. It is so often the Western medicine side that get given the bad rap. So many simply refuse to see any good in it and believe that it is 100% about money…..Hello, take a look at the natural side for a moment. I do not see them hanging there shingle out the front of there office offering there consultation and medicines for free! I have used many natural healer (ND, etc) and they were all extremely expensive. I also have story no different to what I have with western medicine. Mistakes are human not the medicine – on both side!

I believe to serve the public at large, if both sides wanted to truly do well for their patients the

two sides need to; Get it together, literally.

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin

Platelets: * 88 / 99 norm 180 - 400

Liver Enzymes: ** ALP/150 AST/41 ; ALT/143

Prednisone: * 25mgs. Increased due to all liver results out of spec!!

White Cells Continue to do well

List continues to shrink!! PTL

Dave

 

Appointment Oct. 28, 2003
Written Oct. 28, 2003

Overview:

Saturday the fundraiser went very well. Rain held off and pool max’d at 102 F. More on this later and the house full of talkers that attended.

Thank – You to all that attended and to those that could not attend but sent in a donation!

Tuesday I went to my 2 week check-up, looking forward to moving to monthly appointments. It didn’t happen. I had a surprise bone marrow biopsy – ouch! Then I was told my skin is flaring due to HVG disease. I also had the privilege of visiting the dentist to have a broken tooth fixed.

Back to the clinic to find out my liver is once again flaring and that I will have to increase my prednisone to 25mgs.; Oh and by the way I am back to weekly appointments. I am beaten and bruised.

It feels like I have been punched in the stomach and as I was doubling over for that, I received a knee to the face, with a final blow to the back of my head, to knock me down…Enough already!

Now I get to add a sore hip (due to bone marrow biopsy) and a sore mouth to my mountain high frustration. I am totally fed up!!

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin , eyes, feet

Platelets: * 99 / 86 norm 180 - 400

Liver Enzymes: ** ALP/190 AST/41 ; ALT/108

Prednisone: * 25mgs. Increased due to all liver results out of spec!!

List continues to shrink!! PTL

 

Appointment Oct. 14, 2003
Written Oct. 21, 2003

Doctors visit:

DR. informed that as I come down and off the prednisone, I will experience noticeable pain throughout my body. Trust me I told him, it is far from noticeable, it is incapacitating. I have been experiencing pain that ranges from mild and constant, to, constant and debilitating.

He checked my spleen size and it continues to shrink. It is now about 2 – 2.5 times normal. Which is a lot better than the 12 times normal + that it was a year ago.

I am not experiencing any skin Graft vs. Host disease and this is a positive sign since I am on a low dose of prednisone which helps to hold this GVHD at bay. My liver has once again flared up and is causing more concern again. Instead of continuing to come off the prednisone the DR wants me to hold at my current level of 7.5mgs. So on the one hand the GVHD seems to be lessening, however it continues to effect my liver which as we all know is not good. The DR has me holding at this level for 2 weeks until my next appointment ( I was to go to monthly appointments however this flare has changed that, again!) to see if I maintain this level of flare up or if my body resists it and fights back on its own. We will know in one week on the 28^th when I return to the hospital for a check up.

I have been told I can not leave the country for vacation or otherwise for another ~5 months.

I also will not be able to go back to work for at least another 6-12 months. 6 months if immediately my liver clears up, GVHD goes away as well as the other concerns the DR’s have.

It really looks closer to 12 months. Remember they are working with a disease they know little about, so they have to take it very slow and careful.

That was it for the appointment.

Dave’s perspective:

The pain is bad. I have talk with others, coming off high level of prednisone and they have confirmed this fact. It is just a matter of time and then we can be rid of this prednisone.

Along with this I am beginning the journey into reduced energy. I find myself at all hours of the day, exhausted and or completely dis-interested in everything. I have been here before and realize it is another side effect to coming off prednisone. It is just so completely unpredictable and that adds to the frustration. Once again, as I said above, it is just a part of coming down and off the prednisone and getting off that stuff; if this is the price to be paid, so be it! I am told this exhaustion and lack of interest can last up to 5 months. I don’t think so, lets say 2.5 months max. and perhaps 1.5 months. We will monitor this and see how I compare.

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin , eyes, feet

Platelets: * 86 / 82 norm 180 - 300

White cells: 4.6 / 3.8 one more "within in spec. reading and I remove this

Liver Enzymes: ** ALP/90 AST/40 ; ALT/116 <40

Prednisone: * 7.5mgs. currently holding!!

List continues to shrink!! PTL

 

Update Sept. 30, 2003
Written Oct. 3, 2003

Thought: A year when you set out on a voyage, can be so long; when we look back, so short!

I am writing this on my one year anniversary and it feels great. I have been blessed with another year. It didn’t seem possible just a year ago. With a spleen about to explode and a swelling liver amongst other problems, it seemed that I had drawn the short stick. Well, here I am, alive and well and very Thankful! I no longer take the day or anything that fills it as a given.

The fact that I am allowed and able to do what I can each day, is gift enough. Looking at life this way gives new brilliants each day. Each day is filled with reason to celebrate .

I now work very hard on keeping short accounts. If I think I have wronged a person or someone has wronged me, I get the fix in, immediately. If it can’t be fixed, I do what I am able and let it go …. say that a few times …. let it go. How freeing this whole experience has been. PTL !

So what did the DR’s have to say. They say that things are looking as well as they can. My Hemoglobin has now been considered normal for 5 weeks. Most other results are normal as well. This is of course only part of the story and that is why they always ask "how have I been doing". This is not always the case with transplant patients. Often the results are out of spec. for longer periods. This is especially true with calculated results. i.e. One result multiplied/divided etc by another. Mine are all looking good, with the exception of the Liver enzymes and platelets. Platelets are expected to be out of spec. for another year or two. The Liver enzymes are of great concern. We are hopeful my results hold as I come off the prednisone. I am having a hard time dealing with the side effects.

Having said all this positive news, the DR then told me that with Myelofibrosis patients, they are never considered cured. With so little known about the disease and what course it will take, the medical community doesn’t consider anyone cured, only that they can not find evidence of the disease. This not to say that the disease is no longer in your body, it is just they can not find any evidence of it at the time of bone marrow biopsy. It has happened in the past that patients have mysteriously been hit with the disease even after all they went through with bone marrow transplant (BMT). There is no time relationship from one person to another. Some after a short time, others after 1,3,5 years. In summary the DR ask a question of me. So through all this since you know this does not necessarily give you long life, but rather quality of life what have you learned? My response "live each day to the fullest I can!" DR exactly and hopefully you will have 60 more good years, see you in two weeks!

Great note to end on. I was going to be put back on monthly visits, however, I need to take an inhalation antibiotic in 2 weeks, so they aligned the appointments. After that, appointments will be monthly.

 We would be honored if you would join us for our Open House Saturday Oct. 25^th from 1 – 5pm.

We are calling this a Celebration of Life!

Anyone that has given a donation for the Leukemia Research Fund to Brian, Phil, the Kreissler’s or myself, is welcome. Our family looks forward to meeting your family; so bring the gang! Pool, BBQ, Hot Tub, Meet the runners/walkers, etc.

We will be accepting donations for LRF at the Open House. If you know of others that would like to make a donation and join us all in the Celebration of Life, please ask them to come out. RSVP for all ………

Looking forward to a Great Day

 * Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin , eyes, feet

Platelets: * 82 / 74 norm 180 - 300

White cells: 4.2 / 3.6

Liver Enzymes: ** ALP/90 AST/40 ; ALT/116 <40

Prednisone: * 10mgs. reducing at 2.5mgs./week until no longer on it!!!!

List is soooooooooooo much smaller!!!

 

Update Sept. 24, 2003
Written Sept 24, 2003

Thought: Get even with only the people that have helped you! Go for it make their day!
Make your day……
I believe in another section, sometime ago, I started to build a list called "Secret to Happiness".
I recently came along the following thought provoking list on the topic.

Secret To Happiness

Forget
Apologize
Admit errors
Avoid mistakes
Listen to advice
Keep your temper
Shoulder the blame
Make the best pf things
Maintain high standards
Think first and act accordingly
Put the needs of others before your own
Forgive

The list may not be exactly as we all might believe it, or in an appropriate order, but I think you would agree, it is thought provoking.

A challenge: For the next week, see how many of these you can incorporate into your daily activities and mentally (journalizing would be an even stronger method), make a note on the effect. Perhaps phone a friend and buddy up on this. Tell them to print out their own copy and then after a week compare how you did. I’m sure you will be impressed with the results ……..Go for it!

As we close in on my one year anniversary of my Bone Marrow transplant (Stem cells injected Oct. 3, 2002) we look towards better results. I am told by some of the DR’s at Princess Margaret Hospital (PMH) that after about a year of recover, the probability of death or serious illness is reduced to about the lowest level it will ever be, do to transplant. The obvious question to ask is what is that level? Can you put a number on it? I resist asking this; since they know so little about my disease and more to the point, even less how this whole process has effected me; my mind and body. What is a number, simply that, a number. Once again I am challenged to simply accept today, period. This is probably the hardest thing I have ever had to learn (and one of the best lessons) and learn again and learn again and to perpetually learn it. Learn it I will, I must, my very survival may be based on it. So we carry on…….

Another DR told me that since they know so little about Myelofibrosis they really don’t know what a year anniversary means. Then he added, more tests, yeah, more tests! Apparently I need to have a Pulmonary test and several more vials of blood taken to do a variety of extra blood tests. Exactly what these tests are for I can’t remember, but he did tell me – that is an over forty moment. He also spoke to the fact that although I have been told there is no evidence of Myelofibrosis, they will not use the cured word. The DR said that even if I was 5, 10 20, or more years and no evidence, they still would not use the cured word. They have seen it come and go and the come back for unknown reason’s, with deadly results. With little to go on with this disease, the DR’s just simply say to live each day to the fullest and enjoy the moment.

The results of this appointment are encouraging. I once again continue to improve and continue to focus on complete and total recover. I have said from the beginning this is my goal, objective, and that has not changed.

I asked the DR’s about going away for a vacation to the sunny south and they said not for at least another 5 to 6 months, they will then re-evaluate. Patience, another tough lesson to learn. It will be another 3- 5 months before I can drive and at least a year before I can work. Patience.

How have I been feeling.

I have been feeling pretty good. I spoke last time how I felt more awake, in tune and like I had just came out of the clouds. My eyes are now clear most of the time until about 2:00 in the afternoon. I again have enough energy to work around home. With the help of a friend ( OK he did most of the work, I passed tools to him) we installed some oak flooring on the upstairs landing. It does look great if I do say so. I all on my own, install a new laundry tub and faucet in the main floor laundry. I even rode my bike over to the local Home Hardware store to pick-up some parts for the install. The bike ride felt up hill and into the wind both directions!

So, in general I am feeling pretty good. I am running out of little jobs to do around here and that bothers me, I like to motor around and fix things here and there. While, I guess I will watch all the Columbo shows I have taped. It is my all time favorite show.

The beets and lemon juice again helped the liver. It is again getting back in line, even though I am taking a decreasing amount of prednisone. I am looking forward to getting off this stuff. It makes my eyes so out of focus, watery, itchy, sore which all results in headaches. It’s like I am wearing someone else’s glasses. Soon, very soon I will be off the stuff.

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin , eyes, feet

Hemoglobin: low norm (will be removed next reporting period if normal

Platelets: * 74 / 62 norm 180 - 300

White cells: 3.2 / 4.3

Liver Enzymes: ** ALP/76 AST/34 ; ALT/94 <40 normal - starting to behave!

Prednisone: * 15mgs. reducing at 5mgs./week due to chronic GVHD I am coming off slower then previous attempts, trying to prevent a serious flare up as before.

 

Update Sept. 02, 2003
Written Sept 04, 2003

It was another 2 week check-up at PMH and my liver is finally, finally looking to be in better shape. Just one of the 3 specs. is out of spec. The DR and we all are pleased with this. We had expected a great improvement after the cleansing I had done and we received it. Awesome! I will be doing an even more intense cleansing starting Wednesday of next week. I am going to have Day one, two and three as juice days only; I will simply have beet and lemon juice only. Day 4 and 5 I will eliminate beet and lemon juice and drink all the carrot and tomato juice I would like. Day 6 add fresh fruit and veggies. Day 7 add limited cooked food. Day 8 Increasing a variety of all foods (cooked and otherwise) in a balanced approach to eating. This is important for me, with Graft vs host disease, as my liver has trouble assimilating any grease or fat. The more I stay off these types of items, I am sure I will be better off. I clean the liver and then maintain it with quality high nutritional foods and watch the miracle and mystery of the body heal itself!!

Here is an observation that I found interesting. In fact we just realized a lot of this in the last couple of weeks, even though it deals with action and attitudes for the previous months.

When I first arrived home from the hospital I was very determined to clean up our place. Now please realize we keep a clean and tidy house, that is not the issue. What I did find myself doing was simplifying all household activities to their simplest version. I also tidied up anything that seemed to me to be cluttered. The interesting thing here is you must remember I was working with a mind, that unknown to me at the time, could not handle much more than resting, staring at the TV/outside or just mindless staring. So as an example: when I saw magnets on the fridge and we had a fridge covered with them, I found this very, very bothersome. When I would look at the fridge in passing, all those magnets would catch my eye and my brain would actually do a double and triple take. My brain had a very difficult time processing all the input. It become confused and anxious. Who would think that simply magnets on a fridge could have such an effect.

So after some time, I started to remove the magnets and the papers and pictures they held. The more I removed the calmer my mind became.

I also found that the need for a lot more organization was necessary and so I undertook organizing some of our stored items. All the items were taken out of storage from all points around our home and then they were boxed and identified so that it could be readily determined by all what was held in the box. I also built a mechanical room so that all stored items may be kept together.

I also found myself determining which items we no longer needed. This as we are to find out months later was not a good idea. In the state I was in, there were many (most) things I was not able to do. So when determining what is to be kept and what goes, my parameters were very much skewed (as I believed we didn’t need certain things because I couldn’t use the items in the present) and out went equipment and items that in time would be used by me, Emmy or Dave (Bubba). Now in itself, these actions may not seem too excessive or anything to make a big deal about; however, there are a couple of reason I mention this for.

I was and continue to be very sick, although on the road to total health. I believe the above and many more individual actions I did demonstrates how an ill person can, completely unknown to himself/herself, do what they believe is logical and normal, but in fact be causing chaos. It also points out that the sick person, even when so sick has built in triggers that cause them to try and normalize their world. I find that fascinating. At all costs I tried to ease the stress on my own mind and didn’t even know why I was doing it at the time, but tidy, clean, organize, discard I did. I really hope this is coming across and making sense, it is a very difficult subject to explain.

Here is the Big, Significant reason why this is important to understand or at least know it happens. When someone you know and love that is not well, starts doing something that seems very off base, you will give them the support and freedom to help themselves. Remember at the time, I had no idea why I was doing all the the, I am going to call it "nesting"; but nest I did. Strange I think so; thankfully we are not sick enough to find this out of ourselves!

I can say that if it had not been for Emmy and Bubba’s kind spirited manner and support, my actions could have caused a lot of concern and stress (stress one of the most overused words in our society - see below for further explanation). In this situation let us not say stress, but rather leave it at concern.

In conclusion if you run into this situation I hope you remember what I have said above and it helps you to help those that need your help and support.

This was challenging to write about and I hope I have done an adequate job.

Stress

It only need be stressful if you are powerless to change the situation that is causing the so called stress. Most situation’s day to day are changeable. Often, more often than not, the people involved in the so called stressful situation makes the choice to be powerless and do nothing to help themselves. That is a one choice. In my opinion, I do not think the situation deserves to be called stress. I think this is a topic I will continue with under the section on the website called "From the heart".

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin , eyes, feet

Hemoglobin: 139 / 144 norm 140 - 160

Platelets: * 62 / 60 norm 180 - 300

White cells: 4.3 / 3.8

Liver Enzymes: ** ALP/84 AST/28 ; ALT/111 <40 normal - ( 94 / 33 / 142)

Prednisone: * 30mgs. reducing at 5mgs./week due to chronic GVHD I am coming off slower then previous attempts, to try and prevent a serious flare up as before.

Personal Overview:

Dave

 

Update Sept 1, 2003
Written Sept. 1^st , 2003

Well almost another 2 weeks has passed and I am starting to feel better once again. My eyes that have been very blurry and unable to focus seem to be clearing and this means my headaches will subside. I am, however, starting to feel fatigued daily and this could be as a result of the decreasing prednisone. My liver and spleen do not seem to be in the constant pain mode that they were. I believe the liver and kidney cleanse that I did last week with beets and lemon juice helped tremendously. I have been reluctant to go too heavy on the beets and lemon in the past, as they can cause trouble for a healthy liver and kidneys. What I have been doing is slowly trying increasing amounts of the two juices, until I felt comfortable to go much heavier with them. It will be interesting to see my results relative to Hemoglobin, liver enzymes and creatine (kidney function test) on Tuesday Sept. 2 - tomorrow.

All in all, this summer has been better than last and for that I am Thankful.

PTL,

Dave

 

Update August 19, 2003
Written August 22, 2003

Well August 19^th is our 14^th Wedding anniversary and here I am again down at PMH. I could not have imagined 14years ago this is where we would be. Life has a way of sending us down paths we never expect. What’s next??? I say total recover!!

My hospital visit with the DR’s was highlighted by continued liver, eyes, feet and skin Host vs. Graft disease. The worst of which is in the Liver. The results have just now, after about 6 weeks started to improve from the worse level I have ever recorded.

Over the last 6 - 8 weeks I have been plague with a headache 24-7 and eyes that will not focus or clear up. My eyes feel like I need a new pair of glasses as with or without them my eyes are continuously blurry, unable to focus and watery. The DR’s indicated this was from the prednisone. My liver and spleen have been giving off fits of pain in various

location for time periods ranging from minutes to days. As I told the DR’s I believe that pain is not always the result of a deteriating condition, but can be illness living the body (organ).

On the up side, my Hemoglobin has returned to normal and is currently 144. This is great!

I would add, I am getting fed up with this very long and slow process of healing. I never realized 10 months (1 year anniversary Sept. 3^rd!) could feel so long. It sure would be nice to get back into the mainstream and see what I could make of things with my new lease on life…..in time………….in time…………

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin , eyes, feet

Hemoglobin: 144 / 140

Platelets: * 60 / 67 norm 180 - 300

White cells: * 3.4 / 4.1 below normal

Liver Enzymes: ** ALP/94 AST/33 ; ALT/142 - ( 120 / 37 / 174)

Total Billirubin: Normal

Prednisone: * 35mgs. due to chronic GVHD

Personal Overview: I now long for this recover process to end quickly and to get on with life. This constant struggle; well, it’s enough!

Dave

 

Update July 22, 2003
Written July 23, 2003

Well my check-up at PMH yesterday was a big disappointment. Things have once again turned against my body and are causing problems and concerns. This, as the DR. explained is due to the mismatch of the donor cells. One of the 6 parameters from the donor did not match mine and this continues to cause serious distress to my body and body organs.

My Liver results are now out of spec and higher than they have ever. My skin is just slightly being effected. Two new ones are that HVGD is effecting my feet and eyes.

My feet have become very itchy from the inside out ( if you scratch them it doesn’t relieve the itch, as it is on the inside). My eyes are very watery, a little swollen and at times out of focus. This causes the headaches I have been getting ( I was never one to get headaches and this is new to me).

The result of all this has forced them to increase my prednisone back up from 20mgs. to 50 mgs. This is not where I want to be, however, it does give support to the aforementioned body parts to get them back to normal. I am also back to visits every 2 weeks or more, as required. Wonderland doesn’t have a roller coaster to match the one I seem to be on!

Having said all that, I will tell you what I told the DR’s. I told them that all this stuff above doesn’t bother me for one simply reason; I was able to play b-ball and ride a bike with young Dave and that’s all that counts. I have not been able to do that with him in 3 years! So I am happy, positive and look forward to getting this all back to normal and will continue to move on with life. I have had a good month and as far as I am concerned and I will continue to do so. So be it!!

Some interesting facts about my transplant. Out of the 11 other people on the same floor as me at the time of my transplant, normally they expect 9 to live and 3 to die. This is a harsh reality, but true. The numbers worked out very different for us 12. Since the transplants around the beginning of October the results were very different. 9 have died and 3 of us remain in the fight for life. Now I or anyone else has no idea why this happened ( the numbers reversing) or what it means, but they are the numbers. My disease being what it is, I was expected to be 1 of the 3 not to make it – fooled them, hey!

I am off to put a little whoop onto Emmy and Dave on the putt putt golf course!

* Concern ** Very Concerned

GVHD : ** chronic GVHD in the liver, skin – add eyes and feet – Not good

Hemoglobin: * 120 / 123 (Norm 140 - 180) - holding

Platelets: * 76 / 76 (Norm 180 - 300) - holding

White cells: * 3.3 / 6.7 cut in half

Neutraphils: Normal but dropped by half

Liver Enzymes: ** ALP/150 ; AST/58 ; ALT/221 - highest ever - ( 58 / 27 / 76)

Total Billirubin: Normal

Prednisone: * 50mgs. (moved up from 20mgs. Due to chronic GVHD, due to donor 5 out of 6 match – perhaps I over paid the donor for the BMT cells)

Personal Overview: Despite my results, I feel good and I am going to continue to enjoy every day that I am given. Thanks for all your support!! PTL,
Dave

Update July 16, 2003
Written July 16, 2003

Well here I am 3 weeks into my new monthly check-up routine and I am feeling well. I am enjoying getting around and doing more each day. I am now going out to friends places and attending more events as I feel up to it.

I look forward to my appointment next week as I believe my hemoglobin will be at or above 132 (normal is 140 – 180). I am still getting pain off and on in my liver and spleen area. I look at this as I do with most pain, that it is simply; sickness leaving the body, so total health may be restore!!

My mind continues to clear and this is enabling me to do so much more (driving is still a no go, until I am off the prednisone; as it causes various problems with my eyes). I now can play board games and go for short easy bike rides. It is wonderful to get out and around. I have been told by others at PMH that have been going through this recover stage for a number of years, that when they were able (as the time will be for me) that exercise leap froged their recover of feeling stronger and better I have also been able to finish up most of the maintenance required around our home and that feels great. Where needed friends chip in, for which I am grateful. I still require my afternoon rest period, as the mornings (first 4 hours) are definitely my best time of the day. After I rest, I don’t seem to fully become alert afterwards and need to take it easy for the remainder of the day.

The prednisone is causing some unwanted side effects such as hungry, blurry eyes, headaches, anxiety, sleep deprivation, tiredness (it does both, brutal), etc…..

I believe I have once again gained a few pounds. I do have swelling mostly on my left side (you can probably see it on me in the pictures that have been posted). It gets worse as the day progresses. It effects me mostly on my left side of my face on my cheek and swells up into my left eye area and effects my breathing through my nose. It is good I am now down to 20mgs./day and look for the DR. to further reduce it next week when we meet. Providing the GVHD does not come roaring back, I will be able to stay off the prednisone once and for all.

Personal Overview: Improving each day. A most welcome course. My mind is clearing and I feel more like me. Many have said, besides the swelling from the prednisone, I look better then I have looked in years……I trust that is a compliment!

PTL,
Dave