We went to Stanford today and met with Doctor Horning. Based on the CT scans we took on Tuesday, which showed no real change in the mass and the bloodwork we took today, which is all in the acceptable range, we are on schedule to start next Tuesday, so the clock is running. Ten days from now, I will be welcoming back my long, lost (prodigal) stem cells.
From what I understand, the next couple of weeks will be the worst, but while I am in the hospital, I will have the advantage of IV fluids and drugs to control the side effects. We would appreciate those of you who are praying for us would keep up the good work. What we are looking for now is blessings on the team of doctors who will be working on me and for mild symptoms.
While I am in the hospital, I will try to keep up with the distribution, via my wonderfully supportive spouse, but she may need to take up the reins. She will also be bringing me my emails, as I don't expect to have any direct email access. Please do not send flowers to the hospital as I will not be allowed to have them.
Having said that much, you are probably asking, "Mike, how long will you be in the hospital?" The answer is still relative. I will be in a minimum of one week and a probable maximum of one month. It all depends on how well I handle the Chemo. Here is the projected schedule:
|
Date |
Day |
Event |
|
1/12/99 |
-6 |
9:00am Check into Stanford Hospital
|
|
1/14/99 |
-4 |
High Dose Chemo Round Two (VP-16) |
|
1/16/99 |
-2 |
High Dose Chemo Round Three (Cytoxan) |
|
1/18/99 |
0 |
Stem Cell Transplant |
|
1/19/99 |
1 |
Earliest Discharge Date |
|
1/29/99 - 2/2/99 |
10 - 14 |
Typical time for white Blood Count to start coming up. |
Any dates beyond this are pure speculation at this time. So, I choose not to speculate!
One other thing I forgot to mention, while I am in the hospital, I will not be able to have many visitors outside of Lori. This is to protect me from catching any colds, diseases, etc. while my immune system is compromised.
Thanks for all of your hopes and prayers. Don't forget to plan on attending the BIG Post Stem Cell Transplant part we are going to have in June or July. You are all invited. We'll let you know the dates a little closer to the actual date!
Next week we will be starting a new blood count spreadsheet and link.
Well, one round of chemo down, 2 more rounds to go. I wish I could say that the chemo was easy today, but it was not. Before Mike even received any chemo, he got sick. We are still trying to figure that one out since the nurses had given him anti-nausea medication. We figured that was not a good way to start! Also, just like the nurse said, 30 minutes before completing the BCNU chemo (it is administered over 2 hours), Mike started to get edgy, and then severe pain in his throat, eyes, and head. The nurses tried giving him pain killers for it, but the BCNU was complete (and the symptoms go away as quickly as they come), so it didn't kick in as soon as we would have liked.
Mike is a real trooper and he is hanging in there as well as can be expected. The good news is, the BCNU is the worst in terms of short term side-effects. The others will not be as bad short term, but there's always long term....
Please keep up the good work of thoughts, prayers, and e-mails. Those of you with a special connection with the man upstairs need to put it into over-drive. Mike is going to need as much help as he can get!
Tomorrow will be a day of rest. The only thing he will be receiving is saline solution and anti-nausea medication - NO POISON!! YEAH!!!!
We are presently at T Minus 4 and counting. Yesterday was a pretty good day, no real side effects, a little nausea but nothing more, and lots of poking, prodding, measuring, etc. I have an entourage of about six to eight doctors every day.
My great nurses have just started setting me up for today's batch of Chemo. I've had this drug before, but at about one tenth the dose they are giving me today. The administrating of the drug is supposed to be better then the BCNU, but I may have more short term side effects from it.
I slept well last night, despite the hospital interruptions (every four hours, 12, 4, 8, 12, 4, 8). They check vitals, take blood (rarely give it back), and weigh me - In bed no less. Every home needs a scale like this one.
This morning I had some energy so I biked (stationary) for about 2 ½ miles and then had breakfast. We'll try to keep you informed to the best of our ability. It helps I can get to the Internet from the hospital.
Thanks for the thoughts and especially the prayers. My doctor's tell me things are going extremely well so far. They are also wondering when I'm going to take off my wig and show them I don't really have any hair! By all means, I really should be bald by now. But thank goodness for small favors.
The good news is, we are drawing nearer to the Stem Cell Transplant day. It seems to be taking forever to get here. It is times like this when days go by at a snails pace!
Mike didn't have the energy today to bike 2 ½ Miles L Believe me, I was very surprised when he told me he did that! His physical Therapist was happy too (yup, he has his own Physical Therapist). Except for all of the IV tubes hanging, you would think he was in the Shangri La!
Mike is handling the VP-16 very well. His stomach has only been a little upset today. There is a drug called Ativan that is used to minimize the nausea, but it also puts him to sleep! So, when he gets a does of that, I know I will have some peace and quiet for a couple of hours J
Tomorrow he receives the nasty stuff – Cytoxan. They will be giving him moocho fluids because this stuff can damage his bladder if it isn't diluted. So, needless to say, he will be making a lot of trips to the John (his own personal, at that). It will be something we will have to be careful about for the next couple of days. After this round, we have one more day off (Sunday), and then Mike will receive his new life! He and Martin Luther King will share a B-Day.
Thank you to all who are sending e-mails! Mike looks forward to reading them everyday!
Ps. The only reason why he is not writing this note is because his modem card on the laptop went on the fritz, so he has been disconnected from the world today. We are working on fixing it, so he should be up on the network tomorrow!
We are still having problems with accessing the Internet from the Hospital (it is not the link, it is the operator :)). So, Mike requested that I send out a note to you all with the following:
"Just wanted you all to know that about 15 minutes ago, they disconnected the last of my Chemo!!! No more toxins. Hipp-Hipp-Hooray! All we have to look forward to is a little nausea, fatigue, and welcoming the Stem Cells Back!!
Overall, Mike got sick a little today, but not much. Stanford has been pumping him with so many fluids, that he gained 10 Lbs! They gave him some Laysiks (?) and now he is 10 Lbs lighter. Too bad diets didn't work that way :). He no longer looks like a Chipmunk and his body does not look as swollen. The Chemo they gave him today could give him really bad nausea, so the nurses are giving him lots of drugs! I have a feeling he will not remember much from today! Today is the last day he will EVER receive chemo, so that is something to celebrate. Tomorrow is another day off, and then the Stem Cells show up! At the rate he is going, the nurses and the Dr.'s think he will be going home on Tuesday. Mike's mom has been busy cleaning up the place so it will be clean enough for him to live in (thanks Mom J!). My mom has been running around getting those last minute things we need (thanks Mom R!). Without the 2 of them, there would be no way I could get everything done.
Keep the prayers coming! Mike is doing really well (at least the hospital thinks so). It is one step at a time, but so far, we haven't hit any major land mines!
Weeeeee! We have only one more day to go and no more chemo to go before we sleep. Also, Weeeee! Is for the Lasics I don't need to take to keep me running to the toilet!!
Today I have been subsisting on Ice-Cream and popsicles They are light, taste good, and don't make me sick! I really don't recall being that sick last night, but my nurses do, so it must be true.
Tomorrow is the big, STINKY day. I get me stem cells back, which I am told smells like decaying fish because of the preservative they have been in for the last couple of month. Their expected arrival time is 10:30 but you know how fog can impact landing schedules. From there, they keep me in-house for about 24 hours and then send me home. Hip – Hip –Homey!
There are still a couple of bears left out their in the neighborhood. I have yet to have any of the inevitable mouth sores which I'm told must come. I'll do what is possible to minimize them. There is still a small chance of infection which could put me back in the hospital, but I've come so far I don't expect that.
For the time being, we will be commuting back and forth to Stanford for daily visits. I can't think of anything else to say except we are through a long dark part of the tunnel. We are not into the light until the White Blood counts comes up from 0.01 (which we haven't bottomed at yet!).
Keep up the thoughts and prayers.
As with all things, there is good news and bad news. The good news the Stem Cells are in and Mike doesn't stink (yet). The bad news is his body doesn't like getting things it isn't use to, so he had a lot of nausea and stomach cramping through it. Figures, nothing can be easy.
So, what happens now, you ask. Well, it will take 10-14 days for Mike's Stem cells to do their job – start making white cells, red cells, and platelets. Until then, we wait. During this waiting, he can sail through it, or he will experience mouth sores, a fever or an infection. Depending on the severity of the mouth sores, he might end up back at Stanford for Morphine. If he catches a cold or develops an infection, then we are still back at Stanford. So, we are not out of the woods yet. We just need to wait until his body kicks in and starts healing itself.
Until then, there will be a night nurse coming to the house in the evenings to draw blood (once again, thank God for his Hickman), check his vitals, make sure he is eating, and take his vitals. The next day, we come back to Stanford (yes, we get to travel to Stanford on a daily basis until he starts feeling better) and, depending on what the blood work shows, he might receive a blood transfusion or just receive drugs. Either way, the visits can be just a few hours or an all day affair. We won't know until we show up. Makes it rough to make any planning for the day, but c'est la vie.
Thank you all for everything to this point. We are not out of the tunnel, but we are half way through it, so don't let up yet! Keep the prayers an thoughts coming! Mike still has a lot to go through before we can breath a sigh of relief!
Yesterday I was able to leave the hospital and return home. I feel a little like our cats, quarantined to certain rooms, but it sure beats the hospital! No one is waking me up for various reasons, like to see how I was sleeping! They sent me home with a pump to keep me full of fluids. I drag it around behind me on a luggage cart and it hold 2 Liters of Saline. Not much fun, but it distributes about half as much as when I was in the hospital, which directly translates into fewer trips to the restroom!
Every night we'll get a visit from a home care nurse. She takes blood and changes the saline bag. Once I start drinking 2 Liters of fluid a day, I can graduate to a 1 Liter Butt-Pack from the 2 Liter cart.
Everyone, myself is included, is still surprised I have my hair. Unfortunately at this exact moment in time, it itches due to the antibiotic they are presently giving me since my white counts are so low. They are low, but are still expected to drop even lower, before they start to rise.
The fatigue level today is higher than yesterday, they figure day 4 or 5 should be near bottom. So, I think I'll call this note complete and try to catch some Zzzzzzzz's.
First off, let me apologize for failing to get out a note yesterday. For those of you in the know, Yesterday was the worst day yet. We went in at 7:30 for our usual 7:30am appointment. I tended to sleep the day away. We returned home around 12:30 for another nap. However, my stomach went north on me and up came everything. This was of course followed with a fever of 38.1 centigrade (100.4 Farenheit). Anything above 38 is a required reportable symptom.
Stanford called back in the afternoon and told me to come in. So, Lori and Mom awakened me from my deep slumber, put me the car and trekked me off to Stanford (again). They took about over two ounces of blood for running some new tests. They then put me on a new antibiotic (which I now get every morning) and sent us home again. Once again at home, I got sick (getting rid of the dead stuff in my system) and went back to bed.
I was promptly awakened by the home care nurse who then gave me another dose of antibiotics (the type that make's my hair feel funny) and I went back to bed. Once the antibiotics were done, I forced myself out of bed (with the help of my wife) and took my required shower. Then, for the third time in the day, I sloughed off some of the dead cells in my system. The good news by now was that my fever had broken (down to 37.8 degrees)
I spent an uneventful restful night in bed (i.e. nothing came out the wrong pipe), got up at 6:30am, time to start another day.
Today my White Counts remained at 0.1 (the lowest point allowable on the machine). It will hang out here until my Stem Cells finally kick in and start growing. We are looking for this event to occur in less than a week. My red count looks marginal, I expect to require a transfusion by the end of the weekend, and if my platelets keep falling, I think I may need platelets by then as well.
I am starting to get some mouth sores ad my mouth is becoming very dry, almost cottony, and the normal mucus is becoming very thick and sticky. Not fun to say the least. My mouth pain is up to a 3-4 (scale 1-10) so they have started me on a path to help control the pain. The next option will probably be morphine. If I need to go to a morphine pump, they we'll need to readmit me, otherwise I can probably remain as an outpatient. The mouth sores should go away when my white cells start to grow. So, if we can get through the next two weeks, things will get better with time.
We'll try to keep you up to date frequently, but we can only do as good as we are feeling. If we are doing lots of driving, it makes it hard to do lot of typing!
Keep up the good prayers! They are working today!
All I have decided to group these days into one section because it is, quite frankly, easier on me. Although I had been experiencing extreme fatigue, it is not nearly as bad as I had feared. In fact the previous two days, I general have been better than day 3. But since my body is not yet reconstructing itself, things could suddenly get worse.
My white counts remain flat-lined as "less-than 0.1" which is the lower limit of the machine. This morning I started taking my Neupogon shots to help trigger white cell production. Starting prior to now would have just been a waste of time (and mild pain). I now have a bruise the size of a couple of dimes (placed end to end) where I gave the shot. Of course I have lots of belly area left.
Yesterday I received platelets, as mine were critically low. It didn't bump the numbers up much, but at least I've got some. Today when we went to the day hospital (after being to we could sleep in for a couple of hours) to discover I needed Red Blood Cells. Of course, my type and cross-match expired in the computer (They are only good for three days and are taken by the home care nursed on Sunday and Wednesday.) So, today in a nutshell, arrived Stanford 9:30am, Blood Type and Crossmatch until 12:30. First Unit of Blood 12:30-2:30. Second unit of blood 2:45 – 4:45. We figured all of this would need to be done tomorrow (Monday) so didn't prepare long range plans. Oh yeah , you can't donate blood on Sunday Either. Almost forgot got home at 5:30 and the home care nurse arrived less than 30 minutes later!
Throughout the entire day, I didn't do any better than a 2 hour "airplane" nap, so tonight will definitely be early.
Here's praying to an easier tomorrow. On piece of good news – MOUTH SORES. Mine aren't nearly as bad as they could be. I am presently minimizing the pain with patches and haven't moved to morphine or codeine yet! Let's pray it stays that way.
For those you in the know, I am out of the hospital no worse for wear. For those of you who haven't heard, yesterday I had my fever spike from my current normal 37.5 ( above the normal 37.0, but right now nothing is normal) all the way to 39.4 degrees in the matter of a couple hours. This, in anyone's terms is not considered to be good. So about 8:00 last night, Lori, My Mom, and I trekked up to Stanford to have this looked into. Other than the fever, I had no problem – No chills, sweats, nothing.
They decided to keep me for observation (to misquote a famous movie line, "I was never officially here"). The took some more blood samples and generally left me to my own whiles … Which was sleeping. They didn't update my fluids or monkey around in any way, it's almost as if they didn't know what to do with me.
I did get another round a platelets, 7 was just too low a number to ignore. And they did switch one of my two Antibiotics to one with a different spectrum of diseases. By the time I left this morning, my temperature was back down to normal (36.8).
One thing Lori and I have found ironic in this whole process:
Other ancillary information: I am still retaining water, although not as much as before; In the past two days I have lost about 40% of my hair, but the rest seems to be struggling to maintain a hold; And, my hands still look like someone took a sledgehammer to them!
We went to the doctor' office and got some wonderful news. (How often ca you say that it today's society. My White Blood Count which as been siting at "less than 0.1" (The limit of the equipment reported that an of 9:00pm last night (we didn't get the results until today, shows a White Count of 0.9
Obviously this is still critically low, but as we have often mentioned before, "The only indication we have of this working is to wait until the White Count come up 10-14 days after the transplant. We lead this range by an entire day!
The next goal is for all of the other white-blood cell subcomponents greater than one. (Which may occur tomorrow). The informal Stanford pool has my WBC at 3.0 Tomorrow!
On other news, I needed Red Blood Cells today. To conserve time they game m unit and more to finish it off tomorrow. I expect I will also need platelets because they are so low already.
Write to you tomorrow when I can keep my eye's open!
Today has been a day full of surprises to which we honestly believe we owe to all of the prayers for our easy passage.
Here are the surprises:
About the only downside is that I no longer get a Home Care Nurse. We will have labs drawn in the morning, then need to wait about two hours for the results. Oh well.
My fatigue level is still extremely high (however, lower than the Stanford V experience) and my attention span is extremely low. These will need to work themselves out over time!
Thank you for all of the prayers! Please don't stop (since we are still in the forest), but just know, they are working!
Well, it's been a few days since I've written and I'm happy to say no news is good news. My counts have continued to climb while my white blood count has started to normalize now that I am off of the Neupogen. In fact, I got yesterday off for good behavior and I'll get tomorrow off as well. They are even talking about releasing me to my "normal" Stanford doctor following the appointment on Wednesday, assuming my counts continue to look good.
About the only negative going on right now, is extreme fatigue. That and trying to drink 3 Liters of fluid a day! Have you ever stopped to think about how much liquid 3 Liters really is? Let me tell you, it is quite a lot! And not easy to drink either. I really want to eat solid food, but a can of soup is nearly 2/3 of a liter, too much fluid to pass up!
I still have some hair, although it is thinning. Not so much that you'd notice on a daily basis, but you do notice on a cumulative basis.
I can't think of much else, probably fatigue induced so I'll just wrap this up and send the note. Thanks for the prayers and thoughts. Keep them coming!
Has it really been 16 days since I've received my Stem Cells back? It sure doesn't feel like it. Of course that whole first week went by as kind of a blur. The second one just seems to have disappeared.
My counts are still improving. My Hematocrit (red blood cells) is almost up to normal at 39.0 (normal is 40-52). In fact it is higher than it has been in quite some time! (October 19 to be exact!) My platelets are continuing to rise as well. They passed 50 (up to 78) which means I can actually us a toothbrush for the first time since I was admitted to the hospital. I have been using this sponge thingy instead and it doesn't work nearly as well.
Since things are going so well they have decided to release me to the next step, back to Dr. Horning. I will begin seeing her on a weekly basis (probably) until about day +60 when they should release me back to my local Dr. Of course, with the way things are going they may choose to do that earlier to, but I really don't expect it.
With everything going so well, they have decided to remove my "friend," my Hickman Catheter. They really want to get it out because they are afraid of infection. I have protested the removal, but have been told that "everyone protests, but few win." Something about leaving a few in past their better judgment, only to be infected later has convinced the doctors to get them out! The upside is that I can shower without worrying and have one less thing to maintain. The big downside (in my opinion) is they will now need to get blood the traditional way … with needles. YUCK! I haven't had to deal with needles in almost three months and have really enjoyed it. But, I guess to move on we sometimes need to cut (or pull) our "safety lines". The good news is they were going to pull it today, but never were able to get to it. So, I get one more freebie on my blood work for Friday, then out it comes!
I am still fatigued, but not nearly as deeply. I am still listening to my body and when it says sleep, I sleep. Typically, close to 14 hours a day. But, that too appears to be lessening and today my body hasn't called for a nap. We'll see what tomorrow may bring.
As always thanks for your hopes, prayers, and emails. We do read them everyday, although often don't get a chance to respond to each one individually.
Once again I don’t have much to report, but figured an absence of more than three days might alarm some of you. Those of you receiving this at work will have to wait an extra couple of days. But, to all of you, regardless of when you receive it, I am still doing great. At least that is what the doctors tell me.
On Friday I was released from the Stanford Day Hospital (where I went once I was released from the hospital) back to Dr. Horning (my “normal” Stanford doctor). I will be released from Dr. Horning back to my local Oncologist (Dr. Tseng) at about Day +60. In the meantime. I will now be seeing Dr. Horning on a weekly basis. This is a big improvement from my every other day visits. Which, of course, was a big improvement from my daily visits.
Also, on Friday, they removed my Hickman Catheter, my dear friend for the last 2 ½ months. Basically, they don’t release patients back to their doctors without removing it. The removal procedure only took a few minutes and wasn’t that bad. Now I have a smaller bandage (which has to be changed daily) until the exit hole seals up … No stitches required!
Not much else happening. I haven’t napped since Monday or Tuesday, and seem to be getting all of my rest in one shot. I seem to sleep for about 11-12 hours at night. I have been trying to stay up till at least 8pm, otherwise morning comes way to early!
I don’t have my Friday blood counts to report as they didn’t have them by the time I left Friday. It can take up to three hours to get them and they’ll call if they are bad! So, at least we know they are good, but not what they were until Monday.
Update: I now have my blood counts. My white count is stabilizing, only dropping 0.1 to 4.9. It is still within normal tolerances. My Red Blood Count is still looking good, although it did drop slightly. My platelets are continuing their screaming rise towards normalcy and are now at 122. Looks like for the most part we are out of the woods (or weeds, depending upon which character your finger wants to type!)
Thanks, as always, for the thoughts, prayers, and emails. Keep them coming as they are doing good work.
We are closing in on Day 30 and won't that be great! I get to ease some of my food restrictions then! Hip-Hip-Hooray! It means I can actually eat food that was prepared outside of the home. I am looking forward to "real" pizza and for some reason have a taste for a Wendy's hamburger or some Tony Roma's ribs. It's been over a month (27 Days Post-Transplant, 7 Days Pre-Transplant) since I've eaten any food not prepared at home or the hospital. Of course, I'm still on mask restriction for (possibly) up to Day 60, which means I can't "eat out," as it is hard to shovel food through the mask!
Not much to report this week. My white count has stabilized, and gone up just a bit to 5.1. Looks like it will stay in the normal range! My hematocrit (red blood) has come up a little, to 38.3 (normal is >40, so we are close). My platelets continue their rise, although slowing just a bit, to 146 (normal is >150, so we are really close!). The last two values, although technically low, are well out of the range of concern.
We will continue the weekly Doctor's appointments at Stanford through Day 60. They are concerned about a lung infection, courtesy of the Chemo. If it shows up, it will be between Days 30 and 60, which is why they keep doing weekly x-rays.
My veins are still as hard to find as they've always been, although once they found one it only took one stick. YAY!!!!!
Catch all of you later. Thanks for the emails and prayers Although we're not completely out of the woods, the trees are certainly a lot thinner!
Went back to the doctors today for my weekly follow-up. My veins continue to fight. Well, no. That’s not correct, they just run away and hide. We did manage (barely) to get just enough blood to do the required bloodwork. My white count continues to rise, up to 7. My hematocrit is still confused, and dropped a little this week, but still is nothing to worry about. My platelets are back into the normal range at around 170.
On the really good news front, they lifted my mask restriction. I can now venture out into the world ... and breath while doing it. They still recommend I stay away from crowds, or if am in them then I should wear my mask. They have also officially lifted my food restrictions. I can now officially eat in the outside world as well. The only restriction they have left is that I should avoid uncooked food. I.e. no Salads, Sushi, or Sashimi!
Guess that about covers it. They don’t want to see me for another week. If I could just get them to push it out a little longer, life would be even better.
Thanks for the cards, thoughts, prayers (Pray for big veins!), and emails (not enough of these). Tell you all what. If more of you send me responses, I’ll try and write more frequently! Deal?
Since I have no new news to report (things are still looking good), I figured I would take a slightly different tack on this update. I will take this message to answer the questions you have asked me recently, some of which I may not have answered already.
(Oh yeah, from Friday through 10:30am Monday, I received 27 responses. THANKS!)
QUESTION: How much are you sleeping now?
For the past couple of weeks I have been sleeping between 8 and 10 hours per night. I have abandoned all of my day napping as my body does not seem to need it. I do tend to slow down sometimes, but my body has not “crashed” or turned-off like it did 3 years ago. As I start to use my strength (i.e. walking, heading out of the house, driving, etc.) we’ll see if this changes.
QUESTION: Are you able to get out for short walks?
Last Friday they removed my mask restriction, which meant for the first time I could go outside without the annoying mask. It filtered out so much, that it let in too little air. Just walking and talking made me completely out of breath. Once the mask restriction was removed, it sure made it easier to go out for walks. Of course, it rained all day Saturday. But Sunday was nice, so Lori and I took a walk around the block. It felt great to get out into the open for a change of scenery!
QUESTION: How has your weight been? Have you lost much, or are you able to maintain?
This is technically two questions, but they are so related I will answer them as one. My weight has been fairly steady throughout. When I was in the hospital, I put on about 10 pounds. All due to water retention. Once I got off the IV fluids, I dropped about 15 pounds to a little below my “baseline” weight, but closer to what I would like to be. If you think about it, it makes sense. I am presently drinking 3 liters of fluid a day. Much of that is used by the body and not all of it enters the bloodstream. With the IV fluid (saline), every last drop enters the bloodstream and you can only get rid of it so fast! Presently my weight is stable!
QUESTION: Do the doctors have any idea when you might start to get your energy back?
Asking this question to a doctor is like asking “what side effects will I have?” or “When will my hair fall out?” In all these cases the answers are generalities. “You will have some or all of the following side effects which may or may not occur immediately or possibly sometime in the future.” “All of your hair will fall out at some point in time, it could be a few hours, days, weeks, or months.” But I digress from the question. I fell I am probably at about 80% plus of normal in terms of energy levels, both mental and physical. This is much better than the 50% at best I felt under Stanford V treatment 3 years ago. I do need to work on my endurance but that is starting to come.
QUESTION: What kinds of things are you doing to occupy yourself? Do you have any crazy hobbies?
When I first got back from the hospital, I didn’t do a whole lot. Basically it was go to Stanford and sleep. As my sleeping tapered off I watched the idiot box some. (I should mention that for a few weeks, I had no long term concentration. Therefore reading a long novel was out of the question.) I then progressed to reading the newspaper. Recently I have reinstalled our computer hard drive from scratch as the old one kept crashing. This is no fun task to tell you, but it did keep me busy for a few days. I have started reading books, of course when you have all day, a book only lasts a day or so. I try to keep the web page updated and send out lots of emails. I am thinking about putting together a kite of the Wright Brother’s plane we picked up a couple of years ago at the Smithsonian. That looks like it will keep me busy for a week or two. I have also been taking care of the incorrect billings to insurance (some people are billing two policies ago!)
QUESTION: Why do you have to drink so much...is it to flush your body of the toxins?
No fair answering the question you are asking. Yes, the purpose of the large amounts of fluid is to flush the toxins through the kidneys. By drinking so much, they can’t congregate there and cause damage.
QUESTION: Have you thought about making friends with a few junkies? I hear they are great at finding veins.
Until now I hadn’t thought of this. Unfortunately, finding a vein for injection is much easier than finding a vein for drawing blood, so it probably wouldn’t work out real well! Thanks for the question/suggestion.
QUESTION: What’s going on with your work situation?
I am presently out on Short Term Disability and StorageTek has been extremely supportive. Normal recovery and return to work is six months, but I may be able to return in as early as three. We’ll have to play it by ear and work with my doctors as to when I can return. Part of the reason for the six months is that it takes that long for the immune system to return to nearly normal. The white blood cells are just a big look at the state of the immune system, there are many smaller pieces which take longer to recover.
QUESTION: When can you travel?
My doctors do not recommend flying anytime before three months due to the re-circulated air on the airplane. You are exposed to every cold every person on the plane has and with a depressed immune system, this is not a good scene. From 3 - 6 months, the do not recommend it, but if it is important will allow me to fly ... minimally. After six months, I should be able to return to the status of a “normal” person.
QUESTION: Have you ever thought about writing a book about this?
Interesting question. Lori thought about it three years ago, but we have decided we would like to put all of this behind us as quickly as possible. My Web page/emails is my book. Unfortunately, every persons experiences are completely different. You may read one book and become completely depressed, and read another and be overly optimistic. I talked with a few Stem Cell transplant recipients before I went into treatment, and there experiences were completely different than mine.
Well, that answers all of the questions I have to date. If you have any questions, please do not hesitate to ask. I know that sometimes people have a hard time dealing with people with Cancer, but realize that nothing about me has changed. I’m still Mike the same person you knew before. So, don’t be shy! (Oh yeah, I got my Wendy’s Hamburger over the weekend and it was great!)
Things are still continuing to look good. No negative information to report this week. We saw the doctor yesterday (Thursday) since she had a conference to attend today.
My blood counts are still looking good. White count is stable at 7.1. Platelets are up to 191. Hematocrit is at 36.5. This is a little lower than last week, but my doctor is not concerned at all, so neither are we. The good news is it only took one stick to get the blood! I drank 2 liters before I went and the prayers have worked, so let’s keep that one to the forefront for next week!
I’ll answer a couple of the important questions today and more next week.
QUESTION: When can you go waterskiing?
My doctors want me to avoid things like dirt, lake water, plus they want me to shower daily(!) for the first six months. The reasoning behind this is that it takes a good solid six months for the entire immune system to come back. The white cells are the predominant defense and come back first, but there are other components which take much longer to come back (don’t know what they all are, but they tell me they are there!). So, I guess this means I can’t go until after the middle of July.
QUESTION: When’s the big party?
For the same reasons as above, plus the fact it is still cold and rainy outside, the Big Party won’t be until mid July. We may move it up to mid-June at the earliest, but that is dependent upon my recovery schedule and doctors approval (you get the feeling they have Veto authority over everything in our life?).
QUESTION: How about a Pizza?
Sounds pretty good to me. However, I think I’ll hold the Pepperoni as my digestive track is still recovering to some extent. I am down to only one drug to control nausea. I have completely rid myself of having to take Benedryl, at its highest point, it was four a day. Now I only take one Axid in the morning, it is more of an antacid, but it works. Next week, I’ll try to stop taking it as well, but we’ll see.
QUESTION: Do you need to take pills as part of your treatment?
For the most part no, but I have had to take some pills. When I first came back from the hospital, they had me on a whole slew of pills ... antinausea, antibacterial, antifungal, antacid ... As my immune system came back and my digestive track started to heal, we started tapering off the drugs and as described above, I am now down to one pill a day. I am also taking an antibacterial drug twice a day on weekends to help ward off a possible lung infection (due to one of the Chemo drugs). I started taking that last weekend and will take it through day 60, when the danger period is over.
QUESTION: Do you need to be on a special diet?
For the first 30 days following release, I was on a low microbial diet. Basically it meant no uncooked fruits or vegetables, unless they had a thick skin (i.e. oranges, but those are acidic). All food I ate had to be prepared at home to ensure that it was really clean and well cooked. I couldn’t have salads, and I still can’t have them outside of the house because we don’t know how long the lettuce, etc. has been out. I couldn’t add seasonings after the food was cooked, although salt was the only one which was OK. Basically my book had about three pages (8 ½ x 11) of what was acceptable, and what was not. Following day +30, most restrictions were lifted. I can go out and eat, but I should do it outside busy hours to avoid crowds. I should still avoid lettuce and salad bars. But other than that, I can pretty much eat what I want. Oh yeah, I can’t forget I still need to drink 3-Liters of fluid a day through day 60 to help protect the kidneys and liver.
I think I’ve taken enough of your time today. Keep the emails coming and I’ll keep them going! If I didn’t get to your question today, I’ll get to it next week.
Once again I have nothing new to report ... Things are still going well. Although, I think I am starting to become a little stir crazy. My mind/body is ready to go, go, go, but I know I still need to be cautious, so I have only been going a little. It takes a while to overcome the last several weeks of “isolation”, but I’ll cope and once we pass day 60, I think things should be a little easier. My hair has continued to fall out slowly for the past couple of weeks, I imagine I am now down to about 30-40% of the hair I had before this all began.
In the meantime, I’ll answer another round of questions.
QUESTION: Are there any concerns that the RBC and platelets won’t get all the way to normal?
Simply put, the answer is no. My platelets have already arrived so that is a non-issue. The definition of “normal” is so broad that even out of normal is considered to be “normal” if that makes any sense. The measured values, as we are learning, are dependent upon so many outside factors, including how much fluid you’ve had to drink prior to the test. My doctor feels that my RBC may have been artificially elevated a few weeks ago and we are now seeing more normal readings. In other words, the count should reach normalcy “at some point”.
QUESTION: If everything continues to go as planned, is it just a matter of regaining you strength?
If you were to ask me, I would say that my strength is just fine right now and I’m ready to return to the real world. Unfortunately, I know enough to know that it is my immune system that is still recovering ... and that it will be recovering for at least six months. This is just one of those things. It takes 1 month for the doctors to be confident that the immune system has recovered to the point I can function, more or less, in a normal environment, but should avoid crowds. After two months, it is better yet. After three, once again, better yet and I can probably handle crowds. Up till six months I need to avoid “dirty” environments, i.e. lake water, digging in the dirt, cat litter boxes, etc.
QUESTION: Do you need further medical procedures?
Do I need them? No. The only procedure I can envision is having the cuff of my Hickman Cather removed. When the catheter was removed, the cuff stayed in. There is no medical reason to remove it, but they will remove it if I ask. It’s a small, not really noticeable bump, but I can feel it a little so may have it removed. Then again, maybe not. That would require a local anesthetic and a couple of stiches. Just what I need, one more battle scar. I’m beginning to think I look like a road map.
QUESTION: What kind of exercise have you been doing?
I haven’t been doing that much exercise per se. I try to do some walking, but have been lax on this. This is one area I should definitely be doing more. OK so much for that confession, next question...
QUESTION: Have you been reading any good books?
I’ve only read one full book since I’ve been home. It took me all day, and then I was out of new books. I have been reading the newspaper, Reader’s Digest, Fortune Magazine, etc. Oh yeah, and lots of stuff off the internet. You know, trying to figure out how to become rich and retire by 25! So far it hasn’t worked!
QUESTION: What does your 3L of fluid mainly consist of?
I try to mix it up for the variety! I have a carnation instant breakfast for breakfast, ½ Liter. I typically will have a couple bottles of Snapple (½ L each), and a couple of glasses of Blue Gatorade (½ L each). In the last week I have been adding water into the regimen. Before that, I was concerned about getting in as many calories as I could and water has none. I am also drinking OJ. Anything for the variety!
QUESTION: What kind of arrangement with your job do you have?
My company has been extremely supportive and easy to work with and I am presently out on short term disability. They are handling all of the details so I don’t need to hassle with anything, i.e. State Disability forms, etc.
QUESTION: Do you think the Sharks are going to make the playoffs?
This is a tough question. Knowing the Sharks, it could easily go either way! They will probably make/miss it by about 1 point. I think the odds are fairly good that they will make it, especially with the trade of Fleury. However, I just saw in this mornings paper that Vernon has a small injury, this could really hurt them. We’ll have to wait, root, and see!
I Still have a few more questions in the queue, but I think I’ve taken up enough of your time for now. Besides, if I answered them all, what would I use for fill in the next email?
We have successfully passed another weekly update with nothing new to report. In fact, my doctor is starting to complain that I am a boring patient. We take this as extremely good news. Earlier this week I took the big plunge and shaved my head. My hair was just to thin to keep in any heat and all it did was make me look like the Phantom of the Opera. At least it looks a whole lot neater this way … and it only takes two drops of shampoo to wash! We still can’t discern any new growth of hair, but have been warned it may take two months for it to grow.
I have managed to get myself off of the one Axid I have been taking a day, so once I get through the next two weeks, I won’t be on any drugs. Hip! Hip! Hooray! My blood counts are remaining stable (since I didn’t mention it earlier). What else can I say? I am trying to get my life back to normal, but it will still take some time. My doctor says I can probably go back to work part time following month 3, she wouldn’t recommend before that. It is only six weeks away so I’ll get through.
I should apologize to those of you who tried to respond to the last note, but had it bounce. We had an error in our configuration which dropped off the last “c” in cleomagic. It is fixed now.
QUESTION: What vacation plans do you have for when this is over?
Lori and I will be going to Europe for our 5th year anniversary this fall. The timing couldn’t be better, we will be outside of the six month restricted period, I will have several months to recover my strength, and in the meantime, it gives me something to do during the day … researching all of those hotels and stuff.
QUESTION: Where will the Big Party be?
We are planning on having the Big Party at our house (San Jose) in mid July. The exact date is TBD.
QUESTION: What renewed/different perspectives do you have on life?
After an adventure like this you realize how much you need to take advantage of life and the opportunities it gives you. You also tend to realize that there are much ore important things in life than work, minor gripes, etc. You take what life has to offer with a grain of salt, work through it, and move on It may seem simple depending on your perspective. Life is too short to be taken seriously, so I approach every day with a sense of humor.
have to recall that what we went through three years ago was much more difficult, both mentally and physically. Lori and I could still be considered newlyweds when that occurred, everything in life appeared to be going extremely well, and no storm clouds were on the horizon. Then the diagnosis occurred. That was really much harder to cope with. We didn’t know what to expect, so things were worse than we expected. This time we expected the worse, so when things went extremely well, we were pleasantly surprised.
QUESTION: Is the stem cell transplant painful? How is it done? How long did you smell like decaying fish?
Actually, despite some severe nausea, the stem cell process was remarkably easy. They used the Hickman Catheter to give them back. This means they were injected into the bloodstream. From there they found their way to the bone marrow. (Even in Bone Marrow Transplants the bone marrow is injected into the bloodstream). In terms of me being a decaying fish, I honestly couldn’t tell you. Being the one who stunk, I couldn’t smell myself! I have a few Lori type questions, so maybe next week I can get her to write part of the letter!
Mike has sent out so many notes responding to questions, and there are now enough questions to justify a response from me.
QUESTION: Your answer to What renewed/different perspectives do you have on life? was very interesting. Does that cover you, too, Lori or did it affect you differently? Would you use the same/similar words?
I will agree with Mike that this round was easier than the last time. My own body is telling me that. Last time I had a terrible time with my jaw because of all of the stress. So bad, that I was eating soft food for 3 months after it was all over, and it wasn’t really normal until over a year later. This time, no physical problems and there isn’t the learning curve of learning the medical jargon.
My perspective on life has changed long term. I remember talking to someone before we went through this and she said you no longer make long term plans, but short term plans. You live day by day. I now know what she means. Since Mike has relapsed, there isn’t that long term comfort anymore that this will not come back. A lot of people are asking me how am I doing, and I am doing fine for the short term, but I am always wondering what the long term will hold. There are so many more risks now that did not exist before. I am sure many of you will tell me not to think like that, but sorry, that is reality. We were blind sided once, I don’t think we will allow that to happen again. Maybe 10 years from now, but that is along time.
QUESTION: Lori, I wonder if you’ve been working through this whole ordeal. Your halo and wings must be shining. Mike will owe you some exotic vacation in a few months.
Lockheed Martin has been great! There is no way I would have gotten through this without the companies help! My manager did not make it an issue if I had to take time off, and is very understanding if my schedule is still a little crazy. It took me 2 ½ weeks to catch up to everything while I was gone (not bad since I was accessing e-mail every few days from home). Now that I am back on top of things, I am working of the To Do list. Pretty soon I will having nothing to do (yeah, right).
Whomever is watching over us, is putting in overtime. I know when Mike’s white count was zero, I was definitely praying hard, saying the rosary, asking everyone I ran into to pray. There is no way we will ever know how many people were praying for us. We did have a variety of religious backgrounds: Catholic, Lutheran, Protestant, Mormon, and Jewish. The amount of people pulling for Mike was enormous!
Exotic vacation: Well, it won’t be anytime soon since I used up all of the vacation and holidays I had when Mike was in the hospital. However, we are planning on a Mediterranean cruise for our 5 year anniversary. It is something we have been planning for 3 years, and we aren’t going to let a little bout of cancer get in the way!
QUESTION: What do you plan to do for you wonderful wife Lori, who’s supported you during this time AND still manages to amazingly function at work? :) (you dont’ have to answer that.)
Since this one was for Mike, but I am answering the questions now, then I figure I would address it. Mike BETTER have a plan! Actually, he has been great while at home taking care of the house - laundry, dishes, bills - it is going to be hard when he goes back to work and won’t have time to do that stuff anymore! Right now, though, I need to be his trainer because he is spending so much time inside. We went walking today and that tired him out! If he plans on hiking around Europe, he is going to need to be able to go more than a couple of blocks!
QUESTION: Has Lori been out of work to take care of you? How is she holding out?
Hopefully I have answered these in the previous questions. If not, then let me know.
QUESTION: I remember at the "countdown to" point in time you had mentioned that when you got your stem cells back, you would start to smell like decaying fish. Did that ever get really bad?
The smell of the preservative wasn’t as bad as I thought. I was told he was going to reek and that I should be prepared for this horrible smell. Mike, the lucky one, can’t smell it because it is him! The best way to describe it is VERY STRONG GARLIC!! But, the only time you smelled it was when he exhaled. So, kissing him was a challenge J, and it stunk when the Dr.s wanted to listed to his lungs so asked him to take a DEEP breath. Pee Yew! His breath was definitely something not to write home about, but it wasn’t that bad either. It probably lasted a couple of days (the worse being the first 24 hours), but then it dissipated.
Well, that’s all I got. Take care, send Mike e-mails (otherwise he sends me lots a work, and that means he is bored), and don’t stop praying! We still have a little ways to go. Things are going well because there are so many supporters. We couldn’t ask for a better team!
We are rapidly closing in on Day +60. That will come this Friday. My doctor is still complaining that I am a boring patient and after this week, she will release me back to my local Oncologist. When I start seeing him, it will be on a monthly basis. Hooray! Three less sticks per month for blood. Speaking of blood, my counts continue to stabilize and look good. My veins seem to be getting bigger, or all of that fluid in the morning (2 liters before each blood draw) is really helping. In any case, I like easy blood draws.
Yesterday, my doctor released me from my 3 liters of fluid per day requirement. I still should drink plenty of fluids, but it is no longer required. We have also decided not to do another bone marrow biopsy. The protocol technically calls for it, but it is of no value to the patient. It contributes to the broader base of scientific knowledge. Since that is all it does, and I hate the procedure, I exercised my veto authority. Dr. Horning understands and says she would tell me if there was any risk … which there is not.
For your information, Stanford is in the process of starting to build a new Cancer Treatment Center. They submitted an application to the city in December 1997, and had hoped to open the Center in 2001-2 following a full environmental impact review. Unfortunately, the city of Palo Alto is considering an ad hoc committee proposal to delay approval of all Stanford Projects within Palo Also - no matter how badly needed or far along in the planning process - until long-term land use issues. Discussions are underway and are expected to take 2-3 years to complete. That would delay the opening for AT LEAST 2-3 years, possibly more. Having recently gone through their care, I can tell you that although the care is excellent, the facilities are completely inadequate. There is no space for patients, records, etc. I would urge each of you to write to the Palo Alto City Council urging them to let the Cancer Center move forward on its own merits. Letters may be sent to PO Box 10250, Palo Alto, CA 94303, or emailed to city_council@city.palo-alto.ca.us. If you would like more information, let me know, or you may contact the Stanford Office of Government and Community Relations at (650) 725-3323.
QUESTION: Has there been anything good on TV that’s we’ve been missing?
Not that I have noticed. Especially the past few days. I skip the soaps and the daytime talk shows and court TV shows. That really doesn’t leave much else. So, all of you in the working world, you haven’t missed much!
QUESTION: How often do you have to you go back for checkups?
Next week is the end of my weekly visits. After that I start going back monthly. At some point we will stretch that out to every other month, and then to every three months. This will continue for the first five years. We may stretch them out farther, but then again we may not. It is all dependent on how the tests results look and how my progress is going. I will go back to Stanford at month 6, again at year 1, and then annually after that.
QUESTION: Is it possible for the Chemo to come back for a round three? What are the odds?
Anything is possible, no matter what the odds. We have chosen not to look at the odds as odds only apply to a group and not an individual. Besides the reason we went through this fun procedure at this time is because it was the best option for a CURE. That is what we expect. Odds are not important.
I think my question queue is empty. If you have a question I still haven’t answered, please feel free to send it to me.
Thanks again for your thoughts, prayers, and EMAILS.
OK, technically today is Day +61, but who has really been counting the days anyway?
We have e made the next major milestone. Day +60. No lung infection, and no major problems. In fact, I'm so boring that Stanford threw me out yesterday and told me not to come back for four months! So, I'm now on a monthly schedule with my normal Oncologist. Hip-hip-hooray! I'm still not supposed to fly for another month, but I don't need to do any blood tests between now and then either. (I don't have my results from yesterday, but as they didn't call, they weren't bad! I'll post them early next week when I get them,)
I know some of you are asking how I celebrated this momentous milestone. I celebrated one day earlier by getting older (Birthday). We went out to dinner, had some good food, and a glass of wine. I figured, what the heck, it was only one day earlier than I was supposed to drink.
So what happens next? Next month I will do the usual bloodwork, I'll have a CT scan to baseline my new state, and I'll see me normal Oncologist. Monthly after that, I'll have bloodwork, x-rays (possibly), and doctors appointments. I'll see Stanford at the 6 month mark, again at the 1 year mark, and then annually after that.
For those of you who wanted more information on the new Stanford Cancer Clinic, I have added all the pointers and information to the web page. Feel free to browse them at your heart's content.
For those of you who have me on prayer lists, I think we can say they have definitely helped make this process easier on me and Lori. Feel free to have my name removed for successful completion of this effort. You can continue to pray for us on a more individual basis, since everything is a help.
As time progresses, we'll start to reintegrate our lives with that of the world. Lori, is definitely further along in this regard than I am! We have let the cats back into one room (they are still banished from the bedroom) and I am petting them more. Boy they sure missed me!
Sorry for the rambling nature. We'll keep you informed of events as they happen. But, if it gets a while between emails, remember NO NEWS IS GOOD NEWS!
