THE JOURNEY HOME

By:  David Ellis

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DAVE'S PROGRESS REPORTS

SEPTEMBER - DECEMBER 2002
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Dave's daily progress is reported below for the September - December 2002 period.

Sept. 29th
Day started with hydration, which is simply an IV with saline solution that will run continuously for 24hrs. a day for the next 3 days.  I was then given pre-meds which are medication given just prior to the chemo IV. One of these meds is to put a protective coating on the bladder so as to lessen the chance of a bleeding bladder. The second med is to reduce the feeling of nausea. Third med. actually helps me expel fluid intake. I am tracking inflow vs. outflow. Approx.. 1150ml. Of Chemo is then transfused into me over an hour period. Had some nausea and light headedness.
Overview
Day  -6 ... Admission to hospital in isolation
Day  -5 ... Chemo given
Day  -4 ... Chemo given
Day  -3 ... Chemo given
Day  -2 ... Full body Radiation at least once during the day
Day  -1 ... Full body Radiation at least once during the day
Day   0 ... Full body Radiation at least once during the day - Also Stem cell from donor via an IV
Day  +1 and forward ... I am responsible from here on, to advise the Medical team in charge of my care of  any abnormalities ie. rash, pain, bleeding, vomiting etc.  They then take  appropriate action.

Sept. 30th
Hydration continues as well as I must drink a lot of fluid to help flush system as I was to do yesterday. Chemo again. Result was more nausea and a hazing of my vision. I am also scheduled to get two units of pack cells (red blood cells), however, they have been delayed, guess why, go ahead guess – you guessed it, the computer is down. I have now met at least 5 Dr’s or specialist’s, 5 Nurses, 1 technician and several supplementary staff.
Change in Pre BMT regime.
I will receive two days of Chemo instead of the 3 days. Full body radiation in two daily 6 hours apart for approx. a 3min. dosage. I have also been informed that my stay in isolation will most likely be extended, as Myelofibrosis is such and aggressive and fibrosis disease, it usually takes a longer time for the bone marrow to replenish. There is also a strong thought from the DR’s that I will need additional Stem cells from my Donor (Brenda Gentles – my sister) because of the attributes of Myelofibrosis mentioned above. The stem cells are retrieved from Brenda through a blood donation. The blood is IV’d from Brenda’s one arm and fed through a “Cell Separator” that extracts the life giving stem cells and feeds the remaining blood back into her other arm. All quite incredible! I Thank you Brenda.

Oct. 1st
First 2 sessions of radiation over. Each session morning and afternoon 3.9 mins. A shot!
Much better sleep last night, probably that sleeping pill I asked for. Ha! Ha!
Feeling good this morning, strong and energetic although eyesight is a little fuzzy around the edges.

Radiation again this morning and this aft. Therefore my White blood counts will begin to fail and I will become much more tired.
Food was great Day 1 and 2 now it is more like the hospital food we all know and don’t love. Tea is wonderful. I have two cups each meal.
Some of the website is going to be used when I get out of here, I can see that. As I may not have the get up and go to do things like "Desk of Dave" and I look so forward to it.

Oct. 2nd
The day went well as I enjoyed The Rolling Stones new CD – Forty Licks Emmy and Dave bought me. Go Johnny…..M!  Is it the medications or do these songs sounds strangely familiar…….I believe I already know the words!

I took extra nausea medication and a sleeping pill for the evening and had another good night which helps a lot.  All in all a good day!!

PS - They say I am setting records for the amount of fluids consumed. I am also setting records for going through the mouthwash they provide to clear out the chemo that comes through the gums in ones mouth– no big surprise, I don’t want that stuff staying around any longer than need be.

Weight - normal for me is 73Kgs.
I came into the hospital at 67.5Kgs,
Went up to 71.1Kgs
Today weight 62.5Kgs

Oct 3rd
This is considered my Birthday today as this is my first day with my new stem cells and/or beginning of my immune system! Does this mean I age at twice the rate – NO!!
This is the big Day…. Dr. Loach "pushed" in the Stem cells donated from my sister. This took about 25 mins. It takes a while as the preservative that is used when the cells were frozen, awaiting me, can cause a significant drop or increase in blood pressure. So they monitored me very closely while "pushing" in the stem cells and can only go as fast as my body will permit. It is a patience testing process. You know the saying it is over when the fat lady sings; well it felt like the fat lady was on my chest!! It is now done. We now wait to see if a booster amount is required from my sister or if these cells are enough. We will know in about 18 – 20 days. Myelofibrosis takes longer than other recipients of this procedure due to the aggressive and fibrosis nature of the disease. The Dr’s remain confident with my age (remember this normal hits males in their 60’s and 70’s (I was 40 when diagnosed 2 years ago), physical and mental shape they, remain hopeful and optimistic for the best possible outcome.
The Good Lord looked down on us all in the room at about 6:20PM as the Dr. was finishing up the push of the stem cells into me.  The day had been overcast and dull, but as the transplant was finishing, The Lord had the sun break through and a streak of light came right through my window and shone a magnificient bright and warm light. It was truly peaceful and fulfilling. God Bless the Lord of Lord and King of Kings!!  As I walk through the valley of death, I know HE will not leave me nor forsake me.

Oct 6th
Had some medication for nausea after the side effects of it wore off, felt better. Slept reasonably. Showered this morning and road the stationary bike for 5 mins.
Morning seems to be better. This aft I get some more chemo and this is hard on me, although they are going to try the nausea meds again. I hope it works!. I apparently have hyper-saliva glands. You either get dry mouth which is more common or this hyper-saliva glands. This in itself makes me nausea as I choke on myself. I have been given a suction hose to draw away the saliva.

Oct 7th
I have found that since I do not feel like eating and they feed me through a bag, I get hungry pains.  These hungry pains are so intense they cause nausea and vomiting. I forced myself today to eat some toast.  It helped a little. I am drinking boost when these  terrific pains hit. Limited success. I continue to fight these pains. 

Oct 10th
Update from April Stewart, on behalf of Dave.
I spoke with Dave briefly this evening.  He says he's doing pretty well and that he feels best in the mornings.  They are now giving him a marijuana pill, to help with the pain and stimulate his appetite.  Although his throat and mouth are very sore as a result of the chemo, he is surprising everyone and managing to eat a little.  Today, he rode his stationary bike for 10 minutes.  I think we'll have to get him a big fan, so that when he rides this bike, we can create some wind resistance and allow him to feel like he's riding outdoors! 

Oct 17th
Update from April Stewart, on behalf of Dave.
I spoke with Dave for almost an hour this evening.  He sounds great.  He says he's doing better.  He's had some rough days due to ... get ready for this ... an infection in one of his testicles.  Go figure! This was unexpected and very painful.  It began last Friday and got much worse over the weekend.  He had an ultrasound done and they got a Urologist in.  It seems to be under control now - Dave says it's 80% better!  In addition, all the nausea he was experiencing also seems to be under control.  All good news!  He has now lost all of his hair and his mustache but says that him and others say that he still looks like "Dave"!   He hopes to be back on-line in the near future, so stay tuned ... I'm sure Dave will give you a lot more details!  One last thing - he's looking forward to 'flashing' us at the "Wave to Dave".  If you haven't already registered to come out, please click here for details!

Oct 26th
Update from Dave Himself!!
The last couple of days I have been feeling better. Although we still have several times throughout the day that are touch and go.  My white cells are moving up (Thanks for the great cells Brenda), very positive sign and I look to be getting out of protective isolation within 48 hours. This means I can then walk around the hospital floor and limited hospital tours during off hours. The Doctors have re-iterated that this is the begining of the next phase in treatment and it will take up to a year to determine percisely how well the procedure has worked....So while the road may still be long and winding, the scenery is beautiful.   Off to ride the bike, See Ya'

Sun. Oct 27th
Feeling better today. I feel more like my real self. Many of my meds I was taking by IV are now being given to me orally. This can only mean that they are preparing to send me home in the next couple of weeks. Love it!  I hope to be out of protective isolation today or tomorrow. This means I am then able to move about the floor I am on and with the medical staffs ok to move about on the hospital floor in general. Sure is better than staring at the same 4 walls.  I must add however, that I obviously was very sick because I have not minded the confinement.  In fact it felt good and gave me a much needed rest and peace. While as I have the last few days, I look forward to a shave, shower and bike ride this morning, not to mention a good breakfast - I am hungry, good sign.

Tues. Oct. 29th
The last couple of days have been better, however I continue to have neasea. Yesterday was a good day for the most part, however, fatigue is a problem all the time.  Today I feel well after my best sleep to date. My counts are rising slowly and the DR's. remain optimistic.  However they do re-iterate that at this time the stem cells from my sister (donor) are not locating into the bone marrow as yet, and in fact are conlonizing in the spleen. They are hopeful this will change over the next 2-5 months. This is the reason that we still have at least a year long of regular and steady check-ups, tests. With a life time of follow-up. Since there is nothing the Dr's can do to force the stem cells into the bone marrow, we can only be patient and wait. If they do not take in the bone marrow, over the longer term my body will not be able to produce red blood cells, platelets and white blood cells long term. This would be catastrophic. What we can do, is have Faith and pray that the Good Lord blesses me and directs these cells to the correct location for proper production.    I Thank all of you for your support and prayers!

Wed. Oct. 30th
I am sorry to say that you will no longer be able to reach me at PMH....I am very pleased to tell you: "I AM GOING HOME TODAY"!! Although I have been given books on what I can do and cannot, home is the place for me. We now start the next phase. Look forward to updating the website from home.
Kevin, time for that run to Dantes.....no hot peppers and well cooked, Please. Throw in an order of wings - regular, no fries. That's it.  That's all for now..........!
Dave

Tues. Nov 5th
Hi,
I just wanted to let you all know, I made it home from the hospital the other day and it is Great to be home.
We did not tell our 9 year son that I was coming home and when he saw his Dad sitting in the den when he arrived home from school he yelled - Daddy! Ran over to me kissed and hugged me and said he couldn't believe it. For the rest of the day he keep coming up to me with hugs and kisses me and telling me how much he loves me. It was one of life most precious times.
I arrived home at  128lbs., no appetite, no hair and exhausted.
Now a few days later I am 128-137lbs, non-stop appetite (I awake at midnight everynight for another full meal), no hair and exhausted (I rest constantly and sleep a lot).  I am able to do little and feel like doing little. This will change over the next weeks and months. 
Currently, I am not permitted out for the next 100days and visitors are extremely limited. I still have a very weak immune system and that creates some significant risks.  By the way, they are purposely withholding my immune system so that my sister's (donor) system may get used to my body and hopefully start to find it's way to my bone marrow.
Now that the infusion procedure of my sister's stem cells have been completed into me, they say it will be up to 7 months before they can tell the following:  
1) how well did the procedure work
2) to what degree did it work
3) what are the effects going forward 
They have further added that it will be another 1-1.5 years to fully evaluate the total success.  This is simply do to the fact the Myelofibrosis has so scared my bone marrow tissue, they do not know how well my sister's stem cells well take.  They determine this through bone marrow biopsy's on going.  I am obviously not allowed to drive.  
I have 2-3 appointments/week at PMH that generally last all day.  Believe me they are looong days.  
I have many things I have to watch for relative to signs of what they call Host vs. Graft. This is when my system conflicts with my sister's system.  Depending on the signs or symptoms I have protocols to follow. These range  the full gamut from - going directly to the Emergency ward to simply reporting to the Bone Marrow team (which is available to me 24hrs. a day) what happened.  So I suppose the next year shall be interesting..... 
The good news:
I am at home and that feels GREAT!  My family, my bed, our food!
They have also said that my attitude has done a great deal to get me this far, this fast.
So they conclude they are very pleased with my progress.  They re-iterate, patients over this next  critical 100 day period, then 1 year period, is essential.
So there is lot of work to be done,  but by the grace of God,  I will be healed!
Thanks to everyone for your prayers!  Please continue.......
I will be having my personal website updated Wed. and weekends in order to keep everyone updated  whom wants to be updated.  This will then include any information from the Dr's appointment's on Tues. and Fri.  
This website if you are unaware is: www.journeyhome.freeservers.com 
My friend April (designed my website),  whom normally updates  the website, is going on holiday for the next couple of weeks, so look for new updates to be added upon her return.
Please pass along this note and website info to anyone you think may be interested, as it will be your best source of information on my condition, as I go through this exhaustive recovery.
God Bless,
Dave 

Thurs. Nov. 21st
Last week was one of those weeks you hope do not happen.  There was speed bumps, potholes and good news.  Just have to be careful what you focus on.
It actually started the Friday before, when they told me I needed blood,  but that transfusion area was just to busy.  They did have time to get me Platlets, which were also critically low (they do not take as long).  I could not get it Monday as Transfusion dept. closed for Remembrance Day.  So by Tues. I was critically low on blood.  In order to falicitate me ensuring to get blood Tues. (as I knew I would be critical low by then and the test results proved conclusive to that end on Tues.)  I was back at PMH Monday to get my blood tested for cross and type in a different area - blood testing - a little confusing .  This is the process before any transfusion, so they ensure you get the correct blood  for several parameters not just type and +/- and possible antigens.  This is often done same day, but I didn't want to take a chance of missing on Tues. like the Friday previous. So Tues.  I was back in and receive two units of blood. Still low I had to come back Thursday for two more units.  They don't like to give four units in one shot unless it is literally life or death at that moment.  It is very hard on the body to take on so much fluid a once. So back Thurs. for 2 more units.  Then it takes about 3-6 days to feel good after all that, every person recovers a little different. 
Friday I had a meeting with the Dr's.  Here comes the good news:
I am felling much more energtic, although I have very little focus and concentration and can only do minimal tasks.  I certainly can't drive at this point.   Actually I don't even feel like it.  They say another 6 months!
Liver is back to normal size!!
Liver function is back to "normal"!!
Spleen has shrunk 8cms up from the abdomen!
Speen has shrunk 7cms across mid-line!!
I have been cut back on my Prednisone by 62.5%!! - This is fantasic as long term this medication has significant side effects.
They are anticipating me getting off this by Christmas. A real Gift - Amen!  
Good news, eh!

Fri. Nov. 22nd
I will need a blood transfusion Tues. as I am moving lower.  Platelets actually went up, so no need for them today and my Magnesium is acceptable no transfusion required. 
Blood pressure a little high so increased my blood pressure meds.  The anti-rejection med. I take Cyclosporin and Prednisone have this side effect.  Hence the reason they give you a med. to take it down.  My blood pressure is normally low normal.  
Spleen shrunk another 1 cm up from the abdomen 
Didn't measure the mid-line. 

He also said that he wants me to move from 15mgs. of Prednisone to 10mgs. on Tues the 26th.  Will discuss next Tues.

We are pleased with another good report.


Back to the hospital Monday and Friday this week.   Dr's continue to be pleased with my outlook and progress.
I met two other people with Myelofibrosis.  One woman who is 75 yrs. old and told me that this disease is the strangest thing she or anyone around her has seen.  There seems to be no consistency from person to person and it just wears her out.  She confided that she has had a good life and since she is too old and sick they cannot do anything for her.  She ended with but;  I have had a decent 75 years, " you young man on the other hand have too much to see and do and it just didn't  seem right".  She was in good spirits.  She gave me her phone number and we plan to talk more. 
The second person was a 67 year old man that had recently found out that his Myelofibrosis had morphed into Acute Myeloid Leukemia (AML).  Myelofibrosis often turns into AML,  and when it does the end is near.  That was why PMH Dr's were so concerned about me.  They wanted me to do the BMT earlier than later, as it turns very quickly with no notice. So the sooner they try a BMT, the better.  This gentleman was extremely angry as he was told he had 4 months or less to live.  He ask if I had found out anything about this unknown and non-researched disease that may help.  We both had no information the other didn't have, as information  is limited at best.  I felt a lot of empathy for this man.
I really did eat too much Tues. and Wed.  When I say that, it is because I am still eating about 8 meals (down from 10) a day and have easily doubled our food bill.  The Dr. said that is good my body needs it and is feeding on it.  Just do not over do it.  To late I did.   I tell you between this food thing and other costs, it is expensive to get healthy.  People the idea here is don't get sick - so eat well!
I am once again juicing 2-3 times a day to maximize the good stuff. Vitamins are out,  as some interfere with some of the meds. I am on; as does Parmesan cheese, Seafood and Grapefruit juice.  Go figure!   I am now around 140lbs. and I am starting to actually feel full for the first time in a month and a half. 

Fri. Dec. 9th
Well lots has happened over the last couple of weeks. Wow the days go slow and the weeks fly by.
First off, we were just about to open up to more visitation, however, with the outbreak of Norwalk and all the varies flu’s and colds at this time of year, it is not advisable. In fact we are reducing visitation. Please realize any virus or bacteria I pick up with my suppressed immune system could cause death at worst or at minimum, a return into the hospital. So for now, until further notice we are closed for visitation and I am under "house arrest"!
Let me start with how I am feeling currently and move back.
Today I am feeling very achy all over my body and for the first time in a long time I took a breakthrough 10mg. Morphine. This discomfort is probably being caused by what took place over the last week and week before last. The Dr’s suggested that when you come off Prednisone (a steroid), some people experience a fairly quick reaction of achy and/or lethargic feeling; others experience this at some time frame after having the reduction in Prednisone level. I was the latter and felt very lethargic last week. The Prednisone also can give you a false sense of well being, so the lethargic feeling is your body adjusting itself to a normal level of activity for the individual. I believe they will wait for this to pass and then reduce my Prednisone again. I will be requesting the reduction tomorrow.
The Dr’s are pleased with my progress, but like me, want to see more. Specifically my white cells have improved to a point 3 weeks ago but since then remain stable, but no further improvement. In order to determine if it is the Myelofibrosis causing this or possibly some of the meds I am on, it was decided to take me off the Coumadin and Septra. Sometimes these meds interfere with the production of Platelets and/or White blood cells in some people. The Coumadin is a blood thinner and the Septra is an anti-biotic that I need since my immune system is so depressed. The Coumadin I am off it until my Platelets raise up to 30 (that’s what they were before Stem cell transfusion! Go figure). Currently they are normally between 8 – 13; normal is 180 – 400. Yeah, that is low, critical low. I do get regular transfusions at around 10. The Septra has been replaced by an inhalation med that I take every 2 weeks. This med and way of taking it is said not to interfere with Platelet or White blood cell production. So what was the short term results – Last week my Platelets went up to 19 and my White cells drop to almost zero.
This makes me even more susptible to bacteria and viruses! So Platelets better, White blood cells brutal. So they gave me a shot of G C-SF which I believe is a kind of growth hormone to stimulate White blood cell production. The injection was on Friday past when I also received a unit of blood, as I was once again low. We will see how the injection helped with tomorrows tests. The effect on me, however, is bone and muscle pain, hence the pain I am experiencing and requirement for morphine - and trust me, I do not like taking anymore meds (drugs) than I have to, but it was necessary. Ouch!
My anti-rejection drug, Cyclosporin, has been reduced to 250mgs twice/day from 300mgs. (originally 450mgs.) This is a good reduction as this med is very hard on the liver and kidneys. (hence my juicing regime as mentioned lower down)
My Prednisone level has been reduced to the 10mgs. As expected in my last update, Nov. 22. I am going to request it be dropped again to only 5mgs. Med size is 5 mgs. so hopefully I will then be able to eliminate it at the next decrease and before the end of year!
So that is that side of the story.
To my juicing regime I have limited beets (very good liver cleanser) and fresh spinach (high in Magnesium, the Cyclosporin I take eliminates this from my body). I juice at 11:00AM and 8:00PM. If I am up at night I add in another veggie juice – carrots are always my base.
For the morning I am doing Cranberries, Apples with Pears optional. Cranberries are very good for cleansing the kidneys and entire urinary tract, so I do this twice a week.
Although the Beets and Cranberries are very effective at cleansing the specific organs, I am also aware that they are very hard on the organs and I can over do it. Sooo, I move with great caution. The desired effect is to help the body rid itself of the meds that get passed through these major organs, as well as lend support for their functioning. With the early excellent result I am having, I believe this regime to be working.

Thurs. Dec. 12th
Mid to late Sunday a little energy finally started to return. By Monday energy was still very low, however, I was starting to lift myself out of the lethargic lump I had become. On my Tues. check-up at PMH Dr. Dayly checked me out and my spleen remains the same size as previous and all blood work up seems to be in line. The Dr. did reduce my blood pressure meds. By a half pill as my pressure was 102/70. The Cyclosporin meds for anti-rejection are basically the cause of the lower than normal blood pressure. Since they lowered my Cyclosporin from 300mgs. To 250mgs. It would follow that shortly after that, that my blood pressure meds be changed. We also discussed the reduction of Prednisone and the Dr’ agreed to a reduction of 2.5mgs. That takes us to 7.5mgs. I am still on. He did caution me that I will feel further tiredness as I continue to come off the Prednisone. I explained that I would rather feel tired and deal with that then be on the meds. What I have found the last week and a half is that I am very tired but starting to work around it. It has also alowed me to finally get some sleep. When I was on all the Prednisone, I found sleep did not come easy at night or any other time. It kept me pumped up 24hrs. a day with no cycle for sleep. Now with me feeling tired throughout the day, at least I can work through that and sleep at night. Feels more like my rhythm!
Some of you may be aware some not; We found out on Sept. 5th that Emmy’s Mom has Ovarian cancer. She has been undergoing chemo and the Dr’s. put her on stand by for an immediate operation since then. She went in the other day for the operation and they also found bowel cancer. The Dr. has assured her that all the cancer was removed and she did very well through the operation. Thank-you Lord! May (Emmy’s Mother) is now recovering at the hospital and doing very well.
As you can tell Sept 5th was a very large day in our lives, with the all day meeting at PMH, dealing with my donor (my sister), and having the "Support Dave and Fundraiser" event and then finding out about Emmy’s Mother. That day was kind of like having the good, the bad and the ugly all rolled up into one!

Thurs. Dec. 19th
I am still feeling very tired and sluggish.  The good thing is that I now get tired.  When I was on the higher doses of Prednisone I was not sleeping very well.  It is a steroid and can give you a false sense of energy - it did.  
The good news is that my Platelets are holding their own (no transfusion for them in weeks!).  My White blood cells are back up and appear to be holding.  Tomorrow will be the third test and if they are still up, it is a good sign.
The not so good news is that my Liver enzyme tests went up by 2 to 5 times normal!   This means that I am under a GVHD (Graft - donor cells Vs. Host - my cells, Disease ) attack.  It also shows up with redness either spotted around my body or all over my body, as well I am borderline with the runs.  This is dangerous as the runs can cause me to lose electrolytes and become dehydrated and if so, I go back into the hospital. I am home for Christmas and want to stay.  This HVGD is normal, however, but must be kept in check or can destroy all progress and send me back to get another Transplant.   So what they have done is to put me back on a higher dose of Prednisone - 70 mgs. The highest I was on before was 40 mgs.      
The above is all short term kind of tactical stuff, if you will. Here is the great news on a strategic level;  My Bone Marrow biopsy tests came back with the expected test one showing no change,  but the big surprise was in test two, they are seeing some growth (without going further into the technical language) and this they were very excited about.  As mentioned before they did not expect to see this for at least another 2 - 5 months.  SO, it does look like we are on our way!!! 
I did mention to the Dr's that writing out the Thank-You cards for the Support Dave event, Fundraiser event and Christmas cards was the most difficult single task I have ever done.
My hand and brain did not seem to be joined.  Silly mistakes in spelling, etc.  It also took me over a month to do them all.  I did persevere and managed to get them all completed, nontheless, it was tough.  They said this was normal and it will return to me over time.    
They have also reduced my Cyclosporin required from 250mgs. 2/day to 225mgs. 2/day.
So it was kind of a Jekyl and Hyde check-up…..  

Sat. Dec. 28th
I continue to have GVHD (Graft vs. Host Disease, explained in previous update) and remian on the higher diagnosis of Predisone.
The Doctor was encouraged that all but one of my Liver enzymes were back in spec. However they were still "high" normal.  He hopes to start reducing my Predisone this coming week.  My platlets have been holding at very low levels of 19 (normal 180 - 400), however this is high enough not to have me transfused.  This was very good because, almost everyone that was given platlets last visit had a reaction.  Kind of makes you wonder doesn't it......?  
I go tomorrow Monday for a check-up and will probably be getting a couple units of blood.
In my next update I am going to include a Top 10 list of a survey I have done on "What Family and Friends can do to aid the sick".   I have been asked by so many of you to include something like this, as so many want to help;  but just aren't sure what to do.   In order to get a full rounded picture I have spoke to other's suffering with sickness and terminal disease to get their input as well.   I hope you will find it interesting and helpful.  It will be useable info. for you to utilize on all ill people.  I am hoping to put it in on Tues.   

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