EXIT stage right

I haven't posted much recently as there really hasn't been much news. That's a good sign.

Yesterday was my six-month follow-up with the transplant Dr. At six months they feel that you are close to being back to normal, whatever that is. All was well with my blood work and they felt that I had progressed fairly well. So at this point it will simply be continued maintenance on chemotherapy until such time as the myeloma reappears. My oncologist keeps reminding me that it will reappear but also points out that there are legions of new drugs coming out to combat this disease. He feels that the next time around we will be using a drug that we don't even know about yet. So I guess that's an optimistic way to look at it. So with that I guess I'll exit stage right and discontinue any updates on the blog unless and until  myeloma  issues resurface. and once again thank you everyone for your support throughout this process!


One more thing, I have been quite surprised if one item relative to this blog. The blog does keep track of the location of the readers. Here is a list of those locations in the number of times the blog has been accessed from there.

I can guess who some of the folks are that are looking at the blog from places like Japan the UK and Germany but for the life of me I can't figure out who is interested that lives in Pakistan or Morocco or the Ukraine. Oh well guess I'm just an interesting character.

United States	2020
Germany	121
United Kingdom	119
Russia	63
Ukraine	20
Pakistan	13
Morocco	12
New Zealand	12
Japan	8
China	4

Day +75 Wait, just a little bit longer, but it was worth it!

When last we talked the 60 day marrow biopsy had been postponed because of blood thinner issues.  The doctors appointment right after the postponed date (4/29}was uneventful and it was decided to wait 2 weeks for me to return to the Dr. as the results weren't expected to be available until last Wed anyway and my blood numbers were excellent. 

The biopsy that had been rescheduled 5/1 was completed successfully and almost painlessly except for one jolt that seemed to touch every nerve in my body. It was a bit frustrating waiting for thr biopsy results that were the measure of how successful the transplant was.

So today was the day of reckoning, no more waiting.  And the results were great.  No myeloma cells in the marrow were detected.  This means that they aren't creating the rogue blood cells that attack the kidneys, bones and the immune system.  So GREAT!!!

However the Dr. did remind me that this does not represent a cure and the development of the myeloma cells is related to chromosome issues that are not affected by the transplant. So what we are looking at is remission, not a cure. (Having said that the doctors have pointed out that some patients, about 10%, given the same treatment I had had have gone 5+ years without a recurrence.  In some circles that could be considered a cure.)

Anyhow, the plan is to continue with a low dose of chemo to limit the possibility of a relapse.  I'll take it.

I'm not totally out of the woods yet however as my immune system continues to be compromised, less so every day, and I should be careful until day 100. So there are still cautions.  In addition I will need to repeat all the childhood shots vaccinations etc. as all that immunity got wiped out in the transplant process.

BUT ALL IN ALL a great success! Thank you for all your support, it means a lot to me. And thanks to all those medical researchers that developed this procedure, as well as the hospital staff that has to put up with me.  And thanks Eileen for being there through this all.

Day +57 A false start

I was somewhat disappointed this week by a false start on our 60 day evaluation. At 60 days there are several tests that the doctors use to judge the success of the transplant. I am feeling well enough to think that transplant results have to be positive. The prime evaluation tool is a bone marrow biopsy. This is used to measure the presence and density of cancer cells in the bone marrow. There are several other minor tests which are used to complement these results. This evaluation is normally done at the 60 day point to plan on a way forward from here.

The bone marrow biopsy was scheduled for yesterday after two very positive meetings with the doctors on the last two Mondays. Although the bone marrow biopsy is somewhat painful I was hoping that the results would more than offset any discomfort or pain. However after Eileen and I got to the doctor's office they asked me if I had discontinued the blood thinner medicine that I'm taking. I guess I should've asked but no one pointed out the need to discontinue that medicine especially since I'm on a fairly low dose compared to where I was several months ago. Anyway the doctors decided to postpone the biopsy until next week and for me to discontinue the blood thinners until then.

Although this is not a significant setback it does postpone for a week information on how well I've progressed. I'm certainly feeling early good although I do tire relatively easily. I have gone so far as to drive down to Rush on my own this last Monday. First trip down there without someone taking me.

So stay tuned to this station next week to see how the biopsy went.

PS I did venture out to IRM last Saturday for the safety meeting. This is a mandatory meeting for all operating personnel. I am assuming that I will recover well enough to resume an operating role there this summer. This was also my first long-distance outing on my own (a 100 mile round-trip from here). I was able to do this without any drama so I guess the recovery is proceeding. It was great to see some IRM friends that I haven't had a chance to visit with since the Christmas lunch.

Again thanks to everyone that have inquired via e-mail about how things are going.

Day +42 and an oversite

Here we are at day 42 already. There have been some ups and downs but mostly ups.  On the down side the trip to the Dr. last Thursday reviled a high level of calcium and some evidence of dehydration, so I ended up spending 3 hours getting a liter of fluid, with instructions to cut back on calcium intake (milk and tums) and the need to comeback on Monday rather than the longer one week interval, so a bit of a disappointment. Eileen's daughter Katie took me and was interested to see folks at Rush where she did her nursing degree.

On Friday it was off to my cardiologist to check on the old heart.  He was happy with the way things sounded but was anxious to get me back on Coumadin due to the Afib.  He wanted to wait to see the results of the heart tests at Rush before fiddling with any heart meds. He also kept on about how good I looked, Jess was impressed.

I did some first outside adventures over the weekend riding around in an electric cart with my watch cap on at WalMart and Menards looking a bit like a homeless person.  Those electric carts are interesting to drive BTW.

On Monday Eileen took me down to the appointment.  I felt pretty strong and was rewarded with good numbers, calcium and other issues under control and a happy Dr. Fung.  I was rewarded with a 1 week interval to the next appointment.

I felt strong enough yesterday that I did just a bit of yard work and went for a short walk which Quigley insisted on joining. We went to vote (our neighbor was elected Village President) and ate out at a local Thai restaurant, almost empty so low exposure risk for me.

Now to the oversite.  At the last posting I forgot to thank Frank Hicks and David Wilkins for stopping by.  They brought a gift to encourage me to get strong enough to get back to operating streetcars at IRM. Included was a CTA type 8 point hat and a 1948 union pin.  Thanks guys it really cheered me up.

Hopefully I'll be able to get out to Union on the 20th for the 2013 operator's safety meeting. It may be my first solo outing and long distance drive.

Day + 32 At Home

I was able to get released from the hospital on Wed. The feeling at that time was that the issue that landed me back in was drug related. So, after some juggling doses etc. they sent me home.  Thanks to Bert and Jeanina  for the ride.

Back to visit the Dr. on Fri, with Jess.  Got a good report and I'm a bit ahead of where most are at 30 days out so I count that as great progress.  Keeping an eye on my BP and trying to make sure that I don't push too hard at this point.

Back at the Dr. on Thursday.

Day + 26 and a setback

Well I guess it was prophetic that I put this photo on the last blog post. As it turns out I am back. Yesterday, when going to a clinic appointment I just fainted in the parking lot. Eileen said I collapsed like an air filled doll with the air being let out.

I was then taken up to the clinic by someone who had me in a wheelchair. Once up there they found that my blood pressure was very low and I continued to be slightly dizzy. So the decision was made to readmit me to the hospital for a day or two to make sure of the cause. At this point they seem to be leaning toward drug interaction and I expect a significant modification in the drug regime.

This morning they did do a head CT scan to ensure that the basal stent of 2006 had no effect on this issue. I'm feeling fine today and ready to get out of here again.

I do have to say that I was quite disappointed at having to go back into the hospital. I've been told however that's not unusual for at least one return trip for the transplant patients.

One thing is the room they have me in certainly has far better views the one I occupied for three weeks. Would have enjoyed this room although it's considerably smaller than the one I was in previously.

I really have to thank Eileen for running home yesterday to get a supply of clean clothes and my computer for the stay here. Would have gone absolutely crazy last night without her help. Thanks again sweetheart.

So we'll be seeing the doctor again on Friday, it will be interesting to see what the next step is.

Day +25 at home

It seems odd to open this blog edition with a photo of the area at Rush where I spent almost 3 weeks of my life. I'm told this was fairly typical time period for a stem cell transplant patient, but in retrospect it does seem somewhat shorter than that.

One bit of news that several of you have asked about is the mustache. Thankfully it has survived in spite of the loss of other hair. So the mustache remains a trademark dating from January of 1966.

Anyway, I'm home now was greeted by the spring bees that Eileen's daughters Katie and Kellie sent.

I was a bit frightened of being back here at home without the protection of the hospital. Although I really have only been here alone for two days, Wednesday and Friday. But it is wonderful to be back home.

On Thursday we were back at Rush which really is indicative of the next phase of this process. Until day 60 I will continue to be semi-isolation with fairly close monitoring (twice a week) by the transplant staff.


One of the significant things of day 60 is when the medical staff will decide if we should do a second  transplant. I have to wonder even if they were to recommend one whether I would be willing to go through this again.

I do find that I am somewhat weaker than I would like. However considering what I've been through I guess I shouldn't be surprised. It's going to be at least day 100 before I get back to something close to
normal. It does get frustrating as there are some things I would like to do that I simply don't have the energy for, nor should I risk the exposure to germs from other customers at neighborhood stores.

I'll let you know how things progress next week. We do have another appointment at Rush on Monday. We'll see how well my blood numbers look relative to progress back to normal.

Thank you for all your thoughts and wishes through this process. It has helped me to know that indeed I have lots of friends out there.

Day + 19

GO HOME DAY,


But this is only the beginning of phase III of this journey.

Thanks for all your support
Al

Thought today was go home day, but no such luck,

Thought I was heading home today, but they aren't ready on this end.

+17 part II

since yesterday's post was very early and mearly covered the crack of dawn insertion of the IV, I thought I would follow through with a little more detail on yesterday.

It has several pleasant surprises one of which was Jess and  Eric stopping by with some food left over from Eric's birthday party. L'll that I was the only one on the floor with ribs and  cheesy potatoes for dinner last night. It was good to see them even though there stay was brief to do a show commitment, the MSI.

Also got another surprise when a friend former co-student at the U of I, Pete Nicholson stopped by to chat.  In the past few years our professional paths have somewhat separated. It was good catch up and it heightened the afternoon.

Eileen had her St. Patty's day dinner last night I did find myself on the phone once or twice pointing out where I had moved things in the house. Oh well, they all seem to have a good time.

Best news of all was the suggestion that if things continue to go as I have been the last couple of days they should be booting me out of here Monday morning. That be quite delightful and especially tired of looking at my wonderful little space here

I did get into watching a couple of movies last night, one of which was a three-part series called

Arch Angel starring Daniel Craig. I've never heard of this series before it was really good. I did try to download Skyfall via the YuLo system bI wouldn't recommend it.

So today is more or less spent killing time keeping fingers crossed that all goes well and watch a couple more movies waiting for  my release tomorrow. I should say that one of the very nice nurses went out of her way to get me off of room restrictions so I did get to paddle around the floor several times. I'm sure that the exercise was quite good for me. It certainly felt good. Report a bit more later in the day as things go

+17 early

Of course I couldn't be the only person in the hospital without an IV, so this mornings  7a wake up was an IV insertion!   GOOD MORNING!

Day +16

Well yesterday's post was early in the day so will begin with some of yesterday's activities before talking about today.

As I said I woke up to a "do not eat your breakfast" command because they wanted to do an ultrasound on my liver. Guess it just hasn't had enough exercise lately. So I sat around all morning waiting for the trip down to the ultrasound test area somewhat starving to death. Finally did get down there around noon and by the time tests were over it was back up here about 2 PM. Hungry as a horse at that point.

Never did hear anything about the liver test so I guess there really was no problem there. The heart folks continue to enjoy coming by wondering at my totally unpredictable heart rhythm. At this point they've said they're not go to worry about it until I'm out of here and we get some of these meds on my body.

Jessica did stop by on her way back from straightening out some tickets that she had for this weekend. I'll let her explain the issues to as I will probably get them screwed up.

One nice advantage here is a good strong Wi-Fi signal so I was able to tune in a couple of movies to kill the evening. Did watch MI3 which is of course a fairly good action movie also started watching the Swedish version of the Girl with the Dragon Tattoo which is a lot of work as you need to pay attention to the subtitles.

Had a fairly good night sleep although still had several emergency trips to the restroom. They do give me a fairly extensive cocktail of sleeping pills as they do want me to get as much rest as possible.

Woke up this morning able to attack breakfast as planned. One of the things that you might get a kick out of is the post breakfast cocktail of pills so here's a quick shot of the mouth full that I have to get down.

A bit disappointing is the news that if I can get this diarrhea issue under control I can get out of here. It seems that my body should be at this point handling it on its own without the need for antibiotics.

Sport for this afternoon was to try to get an IV into me. I haven't really had one for several days now and they would like to have one but several nurses tried and gave up.

Sorry I can't be with you at your party tonight Eric but you know I'm thinking about you and I hope you're having a good time.

So we'll see how tonight goes hopefully they'll be good news for tomorrow's report.

Day + 15

As I sit down to eat "breakfast" I'm told STOP! We want a belly ultrasound, no food. Caught me with seconds to spare

Day +14

Nothing too much new, or more of the same today.  Blood numbers getting strong enough that I may be able to get out of here early next week.  Just need to get this digestion thing under control.  Lack of progress there had me somewhat depressed today, but things seem to be getting better this PM.

Since the chemo my heart rhythms are all over the place. I have become a daily stop for the heart teaching team.

Last night the remote monitor said I was having an heart attack, and some nurses came rushing in only to find me in pleasant conversation with another nurse. Seems not all remote monitoring is of value. Starting to feel well enough that things are getting boring.

More tomorrow.

Day +13 changes

well I guess I really did lose track of what day it was when I was in here.

As it turns out it is day 13 not 11 as I thought just the other day. It's really quite surprising the extent to which you lose track of the calendar as well as losing track of what you do from day to day.

I have to say that I don't remember much about those first few days I guess I was a pretty sick puppy. 

I do recall thinking the beds were rescued from animal chutes at the stockyards. 

Most recent medical issues have surrounded a diarrhea infection that I have that really needs to be cleared up before we can move forward.

Unfortunately that infection has resulted in me being somewhat restricted to my room so as not to spread the infection to other parts of the floor as I must admit I did the other night.

Good news is that all my blood counts are responding favorably and if we can get the intestinal issue under control I'm probably getting out of here fairly shortly. I will have very low resistance and although very low so will the pretty much restricted to what I can do in and around the house but that has to be more pleasant than listening to Silver Line trains bounce over the Paulina connector junction. 

And with my restriction I'm unable to go down the hallway and observe traffic operations expressway.

 

The new look is arrived the hair loss aspect of the whole chemo slid in. Son Burt had the joy of buzzing me today. We buzzed the head and we buzzed the beard but left the mustache in place however. It will be interesting to see whether it will survive and live longer than the Blackhawks winning streak. I can only hope, it will be fun to see. 

 

I guess I should say that my spirits are picking up as you might guess from the tone of this blog entry.

I really wish there had been some way to capture in sort of cartoon version everything I saw and lived through during the transplant process. Some of the things I just don't know how to describe like selling little silver bits of costume that was somehow related to the morphine was taking, to suppress pain from the diarrhea. Also had a dream in one time that I was working on a television show that was selling surplus Navy merchandise sure why anybody would want any of that.

Anyway things are looking up. I hope you like the new look at least one person compared me to a Bob  Magnuson look like, anyway sorry Bob Hope you didn't take any offense will be all in joint fun. 

Goodnight

Day 10 oops day 11

Yes I Finally am resurfacing on the 10th day of this procedure. Have been feeling a bit better for the last four days early haven't had the concentration to put this blog together the primary activity right now is cleaning out my system Much of which seems to include almost constant diarrhea, Sorry for the realism, Late nights are spent tossing and turning with very little sleep Montovation.
So I'm still alive and feeling quite a bit better today hopefully I'll be able to have sufficient sufficient concentration to talk a bit more about crazy dreams crazy things that went on.

Time. Really flies when you're having fun Anyway miscounted a couple of days with perhaps a surprise for you or go into the city's marathon

Daily five and here I am

Well we have gotten through five days of this and I'm still here to tell about it. They tell me the waorst is not over but I can't Imagine it getting too much worse.Anyhow more do come! Did get up and take a Couple of Walks around the floor. Hopefully that give me some exercise and begin to get things moving The doctor say after all my business experience it's alwaysu  what's next and in this case there isn't always a what's next you have to go with the flow.

So hoping for the best, hopefully will be a good night sleep tonight don't want everybody To get snowed in.!

It is day four

And I'm still hanging in there more to come

My Rebirth

The literature likes to talk about this the day that you begin getting your stem cells as beeing a day of rebirth. They even go so far as to give you a Birth Day cupcake.the day started out with a trip down to a surgical suite to get a PIC line installed. Basically this is like a giant IV installed in your upper arm with a small diameter wire that goes all the way up to your heart. This is done with ultrasound to ensure that the PIC line follows the proper branches in the vain network to get to the heart. Of course I caused a bit of trouble here as my veins seemed to be rollers and hard to poke into.
The gurney trips down to the surgical suite for the PIC line was installed reminding me of those movies that you see of the trains winding their way through the markets in South America where sellers are removing their goods just a head of a train. It seems that this part of the hospital was built prior to nurses having computer stations inside the rooms, even though the building is relatively new. So each nurse has a portable computer table but that place out in the hall to enter their daily information. As we come down the hallway with the gurney there is insufficient room to get through with the computer table on either side. So there's a bit of a scramble to get out of the way for us to roll by.

And of course the operating room and my room right opposite ends of the hospital.

Then the doctors was also concerned about the condition of my lungs as a result of the fungal pneumonia earlier this year. So we had another dodge down through the computer tables to get to CIT scan location early in the afternoon.

 After my return they had set up the devices that look somewhat like hot dog warmers to thaw the blood and stem cells. Producing we move forward to injecting some of the stem cells into my system. I was surprised that this was being done by hand and not by some sophisticated machine. The explanation was that the human contact is quicker in the case of emergency or need to stop or speed up the infusion process.

There were six bags of blood product to infuse however they decided to do 2 yesterday and am looking to get four more today.

The reason for splitting it is related to a preservative that they put in blood which can potentially produce some severe allergic  reactions so they want to limit how much of that preservative gets in your body daily. To help fight any allergic reactions and did give me a large dose of Benadryl which pretty much puts you to sleep, enough so that I missed Eileen leaving last night and delayed this report till this AM. So far I'm still feeling well, This is an odd situation where you come into the hospital feeling fairly good and the goal is  make you sick and they try to cure you.

So no big issues yesterday other than of course it was a zero day. Still feeling pretty good and will see how things progress today. Thanks for all your thoughts really appreciate them.

We're in it now and another surprise.

 So as predicted even though we arrived at the hospital at the requested 6:30 it was pretty much 8:00 o clock before things were ironed out with the admissions people. So off to the room on the 10th floor of the Kellogg pavilion at Rush. The promised view of traffic on the Eisenhower is obtained from the group lounge certainly not from my room. The room however is pleasant and acceptable considering it is a hospital.

 Looking to the south the views certainly are not wonderful with a view of one of the mid-50s additions. That gray concrete has really not aged all that well.

 If one leans over and looks hard the left you can see some of the buildings around the museum campus on the lakefront, with the tip of the new wing just visible on the left.

 A surprise relative to this unit and its relationship to the new wing.This had been the location of  this unit prior to the opening of the new wing. The unit was relocated to the 14th floor with an eastward view. From my point of view (as a tourist) that would have been the ideal location. However,there were issues with the ventilation and maintaining positive air pressure in some of the rooms. The simplest fix was to move back to this older location which they did several months ago.  So even new construction sometimes gets it wrong. They are currently revamping the ventilation system in this unit will move back into the new wing.

My BIG surprise was finding out that the peak of the negative effects of the chemo that I got today is not felt immediately. It will be five or six days before I hit bottom with the negative effects of this process. I had expected tonight to the rather uncomfortable but it will be Saturday or Sunday before I'm really feeling lousy. So where I had prepared myself for miserable evening it now seems like it will be a slow descent into this weekend. They promise that after this recovery will begin.

It also seems that the four days of blood collection last week produced so much blood (even though it is low in stem cells) that it will take both tomorrow afternoon and Wednesday morning to put that blood back into my system. Tomorrow they will also be installing what they call a PIC line which is a catheter type arrangement that allows for drawing blood and administering the drugs without the use of a needle. Even though these new needles are fairly painless I really like the idea of avoiding them all together.  The catheter extends all the way from the elbow into the heart.

So tonight is pretty much sit and wait for the effects of chemo to begin, and I'm feeling fine.Can I escape to one of the Taylor St sports bars?

As you might guess there is a great deal of concern about the introduction of outside germs and bacteria in the unit where most of the patients have compromised immune systems. Even to the point of posting this warning in the rooms .One manifestation of this concern  is that flowers will not be accepted but on the other side if you don't like the hospital food you can have visitors bring in whatever you'd like. But somehow I don't think Eileen will be allowed. to bring Quickly up for a visit.

Having moved back to the older space there are a couple of legacy issues in the room. Like I wonder if this is close to my last encounter with a picture tube television. Interesting hoe quickly we have been spoiled by flat screens

And here we go

So here we are at 5 AM getting ready to go to the hospital. Yes you guessed it we are moving ahead with the transplant in spite of the less than desired stem cell collection. Indeed Friday produced only 0.4 million cells. So yesterday the doctor gave me the choice of moving forward recognizing that we didn't have a sufficient number of stem cells for a second transplant if necessary. Or postponing this for a couple of weeks while we attempted to collect more cells.

I guess I was  thinking that we were here at this point and I had pretty much prepared myself mentally. so let's move forward and get this thing over with. A postponement would probably require another chemo cycle to get all the chemicals in proper balance for the transport.

Actually slept pretty well last night. It was Saturday and Sunday nights that were fairly sleepless. I guess once I had made up my mind and committed to moving forward the uncertainty went away. One of the things that does make me wonder is how they continue to tell you that you don't need to go through with this and you can say NO right up until the point when they start injecting you with the chemo drugs. somehow that comment does make me wonder.

Last night was spent packing things and clearing out bills etc. so that it didn't leave Eileen with too much of a burden

So why exactly do they need us at the hospital at 630 in the morning. Somehow I think after checking in there will be a lot of sitting around doing nothing. But I guess after so many years of travel I should be used to that sort of thing.

So depending on how I feel after the administration of the chemo drugs I'll let you know this afternoon or tomorrow how things are progressing.

One disappointment is that my room will not be in the new highly visible portion of the hospital but in an older building. I promised. however thatt I will have a great view of traffic on the Eisenhower Expressway.

Another Try

Another 6+ hours with Frankenstein pumping away at the blood.  I didn't see the numbers for yesterday but they were pretty sure that we'd miss the 4 million target. The feeling yesterday was that we were close enough that we would probably go through with the transplant as planned next Tuesday and worry about enough cells for a second transplant if and when that was an issue.

 We have scheduled a meeting with the Dr. on Monday to see how we move forward.  The uncertainly is the most troubling thing about all this.  Sure would like to have things more definite but its go with the flow!

Harvesting more cells or is the well is going dry?

Another day of taking my blood for a spin.  They really had the machine humming which you can tell by the amount of tingling you feel (caused by a chemical they use to keep the blood flowing).  The tingling is controlled with tums believe it or not.

But in spite of the machine humming the stem cell harvest was way less than we had hoped for, only 0.4 million, so we need to have a good day tomorrow to hit the 4.0 million target.

If we don't hit it I'm not sure what plan B is. If there's anything that really bothers me with this whole process is the uncertainty.  Of course they tell you that each person is different so there is no fixed roadmap, but I sure wish there was.

Besides the uncertainty of tomrrows process we're looking at 3-6 tonight so the drive down will be just great.

Stay tuned tomorrow to see if we hit the target or if we need to develop a plan B.  Its all so much fun.

Another Million but not enough

Well another day of stem cell collection. Even though we achieved a little more than 1 million it is looking like it's going to take all four days to hit the 4 million mark that they want. I'm not really happy that this process is going to take all week but the alternative is surgical removal of bone marrow. So I am willing to put up with is staying in bed for six hours.

As I mentioned yesterday the machine that does this really looks like something that Frankenstein would have invented.

So disappointed that more time is required, pretty sure we'll be doing this again Friday when I had planned to get some loose ends tied up. Thanks to Eileen for putting up with all this, but there's more to come.

A weekend of injections and an explosion that wasn't

We continued with the the neupogen injections every morning over the weekend. The main side effect of this drug is achiness at the large bone joints. The reason for this is that the drug is stimulating the growth of bone marrow and it wants to get out!

On Monday it was a drive downtown to Rush to get an ejection of mozabil. This drug is intended to help mobilize that excess bone marrow into the bloodstream. Instructions for this drug include taking Imodium to help control side effects. I'll let you imagine what those side effects are. In fact the word explosive was used but luckily I didn't have personal experience with that.

Today was devoted to a process called apheresis which is the technical term for the extraction of stem cells. Blood is pumped out of the body and run through a centrifuge to extract the stem cells and is then returned your body. Here's a photo of me happily enjoying the process.

The device itself looks like something that Frankenstein might have invented. So after five hours on the machine I was delighted to learn that they were able to collect 1.4 million cells today.  The target is 4 million or so I know I will becoming more familiar with this device.

So Eileen says I should be telling you about how I feel about all of this. Somehow I had not expected that  I would be lucky enough to be able to complete this process in one day. So coming back for a second and possibly a third day is something I had prepared myself for it and it is not unusual I'm told.

I did spend the day doing some magazine reading and got familiar with the development history of the Boeing 727, as well as the features of the new Crossrail link in London but that's all another story for another time.

So tomorrow will be pretty much a repeat of today and hopefully will be able to collect a few more of those cells. We'll check in with you tomorrow to let you know how the process all went.

First Injection or Happy Valintines Day

One of the comments to the schedule letter was "...it was precise and scientific as we know you...  " or as Eileen sometimes says, actual and factual.  I guess that's the German engineer coming out.  So I'll try to make the posts just a little more human and inject a bit of humor if possible.

Thursday was the first injection of neuprojen.  This js the drug that stimulates growth of bone marrow. The drug is given as an injection in fatty tissue so my belly is the target.  Well given my body mass and the limit they want with each injection lucky me gets 2, one on each side of the stomach.  And as a bonus I'll be taking these at home, once a day over the weekend.  Since I just can't see me giving myself shots, I've asked Eileen to do it.   So not only did I get my first two shots, Eileen got training in how to give them to me over the weekend. The first two shots were given by Eileen as a test to make sure that she had learned the proper procedure. So my Valentine's Day present was getting stuck with a needle twice by my beloved.

A nurse at the injection center did recommend a small Italian restaurant over on Taylor Street (which is an Italian restaurant area near the hospital for those of you not familiar with the Chicago area). We went to it for a Valentine's Day Italian dinner. I've attached a photo of us as well as the Valentine cheesecake that was their special for the day.

Some of you who haven't seen me in a while might be surprised by the length of hair and beard. The beard was described as Civil War style by one of my Facebook friends. Since all the hair will be falling out in about a month I decided to grow as much as possible while I can. There is some debate at the hospital as to the fate of the mustache, if it does go, that will be to first time that many folks have seen me without it, since it dates from Christmas of 1965.

One of the side effects of this drug is tiredness and I fell asleep on the couch almost as soon as we got home. Eileen did sneak this photo which you might get a kick out of. Anyway will see how the side effects of this drug materialize.

Proposed Transplant Schedule

Here is the summary of the transplant schedule I sent out to those that requested it last Wednesday

Several of you have asked about the schedule for the stem cell transplant. I did have a couple of unexpected setbacks in January,  two hospitalizations, one for pneumonia which turned out to be a yeast infection, and therefore didn’t respond to antibiotics and one for dehydration, an after effect of the first.

I began the transplant process last week with a number of pre-transplant tests, however the actual process begins tomorrow. Then I will begin receiving injections of a drug which stimulates the production of blood cells in the bone marrow. The following week I will receive injections of a drug that mobilizes those extra blood cells from the bone into the bloodstream. We will also begin the process of stem cell collection which involves running my blood through a machine to extract the stem cells. This is very similar to being on a kidney dialysis machine and will involve 6 to 7 hours per day. Most patients complete the stem cell collection in two days but this could stretch out for as long as four days. This process is scheduled for February 19 through the 22nd.

The following Tuesday, November 26 I will check in to the hospital for the beginning of the actual transplant process. Tuesday will be devoted to the injection of high dosage chemotherapy. The high dose chemotherapy is toxic to the bone marrow cells, so after it is completed marrow cells need to be returned. The stem cells harvested the previous week will then be injected on Wednesday the 27th. In all the literature they described this as your rebirth day or day zero on their calendar. It is expected that I will be pretty much nonfunctional until day eight. At that point I'm expected to begin to feel some return to normality. Stem cell transplant patients usually remain in the hospital from 3 to 4 weeks so were looking at a go home time anywhere from day 21 to day 28.

I will then continue to be on close monitoring until around day 100 as my immune system will be very comprimised. There is the possibility that if the expected response does not materialize a second transplant will be recommended. Sufficient stem cells are collected initially to allow for this second transplant.

Generally it is expected that it will be six months after the transplant before you return to normal. At this point the doctors are expecting that I will need to take monthly chemo shots to keep the cancer under control. However the expectancy of the control period could be in excess of five years where without the stem cell process life expectancy was less than two.

So I'm bracing myself for this process, not looking forward to it but it's better than the alternative. Eileen has been very supportive and I don't know what I'd do without her.

I hope this answers most of your questions if not let me know and I'll try to provide any additional information you might want to know about.

Thanks for all your thoughts, wishes and cards. Wish me luck and I'll be letting you all know how things are going.

Al

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My First Test Post

Much of the literature on recovering from this proceedure recommends keeping a journal.  So at Eileen's suggestion we decided to go 21st Century and make it a Blog.  Here is the first attempt at posting.