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    Clinical Trial (Stem cell transplant Aug. 2, 2002): Cancer Sucks!
    Vaughn Deel

    A long time ago, in a galaxy far, far away……..

    April 27, 01

    Dear Brothers and Sisters,
    Well, I went to the dr. today and heard the news that I knew was coming. My cancer is progressing rather rapidly at this point. I will go in for a C-T Scan on the 4th and the dr. on the 10th. On the 10th we will probably discuss my course of action. Today we discussed several treatment options. I chose the first one immediately, even though it is a phase II trial drug. I will wear a pump for 3 weeks and then have a week off. I will do this until I either 1) go into remission or 2) it is determined that the drug is not working. I will, once again, lose my lovely locks. (That's OK, the gray was starting to come back.) I will be one of 15-30 people in the nation using this treatment. I guess that kinda puts me in an elite group! (Bummer) I will be one of 4 people locally receiving this treatment. I'm not sure of the side effects yet 'cause that is one of the purposes of this experiment.
    I'm hoping the side effects will not affect my playing ability too much 'cause the band is finally getting some good bookings and I'm pretty excited about that. I ask that you all remember me in your prayers/meditations/whatever you do on a daily basis and sent all the healing energy you can spare my way. I have made a commitment to the Goddess to work with her to heal my body as well as my spirit. Some of you were with me the night I made that commitment and you helped me start the hard work that is in front of me now.

    Oh yeah, earlier I stated that I chose the first option for treatment immediately. I chose it based on its name. It is called Isis.
    Love and Bright Blessings,

    May 7, 01

    Dear Sisters and Brothers,
    Today Isis and I started our journey together. On Monday, I went to the
    hospital and they installed a catheter in my left arm that runs up my vein
    to a spot above my heart. This is the "tap" that will be used to deliver the
    chemo. I then went to my doctor's office where they took a long needle and
    stuck it in my hip to take a bone marrow sample to insure that my cancer had
    not mutated into a more serious form of lymphoma or leukemia. I will get the results in about two weeks. In the meantime, my visit today was all about hooking me up to my pump and observing me for a while to make sure that I didn't have any adverse reactions. None noted. So far, so good. I've got a cute fanny pack that I get to wear that contains the pump and a weeks supply of Isis 3521. It delivers 3.5ml of the drug an hour and makes a little noise that sounds like something out of Star Wars. I would prefer the light saber noise, but I guess I'm stuck with this one. Since this is an experiment, I
    don't know what, if any, side effects I may experience with the treatment.
    Just part of the study, I guess. This pack, which I get to keep by the way,
    will be my constant companion for the next 3 weeks. I will then get a week
    off and continue the next week for the same cycle that will last anywhere
    from 4-30 months. I was told today that I may not lose my hair which could
    be a temporary bummer, 'cause I quit shaving a couple of weeks ago in the
    anticipation of not having to shave again for up to 30 months. Oh, well.
    In response to all of you that have sent me notes of encouragement and words of love, THANK YOU!!!!!!!! It means so much to me to know that so many people care about me. (You don't have to stop either!)
    I will keep you all updated on my progress, 'cause I have decided that I
    don't have to take this trip alone. I'm carrying all of you in my heart.
    Also, please feel free to send this note along to anyone that you feel might
    be interested in reading it.
    I was extremely saddened this week to learn of the passing of my dear
    friend, "Pepe" DeSantis. He was a very close friend for many years and
    someone who always gave me encouragement even though he knew that he was having health problems of his own. For those who didn't know him, for the last five years he was the chef at Goodfella's Restaurant in downtown Hpt.. Three years ago, when I started my first treatment, he fixed me a wonderful concoction he called "Southwest Seafood", a wonderful blend of scallops, shrimp and cheese sautéed in a wonderful butter and red pepper sauce. He told me he wanted to make it part of the menu and, knowing that I love spicy food, wanted to make it for me and see how I liked it. I was in heaven. I made it a point to order it many times over the last few years as long as he was in the kitchen to make it. Tonight, Dennis Parker, the proprietor of Goodfella's (and one helluva good guy) opened his club and his heart to all of Pep's family and friends for a memorial to this wonderful man. It was so inspiring to see all the people that showed up to show their love for "the oldest surfer in the world". Reflecting upon it now makes my problems seem pretty small. I love you and I miss you Pep. The saddest part of all this is that he is only the last of all the friends I have lost in the few short
    months of this year. Makes you wonder sometimes what the "broader plan" is. Time will tell. In the meantime with your, and Isis' help, I'm going to
    keep on plodding along.
    There will be more later. Ya can't get rid of me that easily.
    Love and Peace,

    June 7, 01

    Dear Brothers and Sisters,
    I regret to inform you that Isis and I are no longer a couple. Our whirlwind
    courtship only lasted three weeks and I'm sorry to say that she will no
    longer be at my side. I did get to keep the lovely fanny pack as a
    consolation prize though.
    On the more positive side, I start two new chemo regimens next week. On
    Thurs. I will go in and start a drug called Cytoxan (ya gotta love that
    name!). I took this one in my first treatments 3 yrs. ago. The infusion
    takes 3-4 hours and the side effects can be pretty nasty as I remember (or
    tried to forget). I will do this and then get three weeks off. Most likely
    it will consist of 8 treatments if it is any thing like the first time. If
    you want to know a little more about it go to:
    and read the short explanation of possible side effects and what-not.
    On Fri. I will go in and start a drug called Rituxan. This is an extremely
    promising treatment. It has shown great results for my type of cancer,
    follicular, small cleaved-cell (or B cell) non-Hodgkin’s lymphoma. It is
    known as a monoclonal antibody. It's job is to teach my body how to identify the cancer cells and kill them on its own. It places a biological "flag" on the lymphoma cells to identify them as foreign objects. The immune system then recognizes these cells and kills them. For more on how this drug will work in conjunction with the Cytoxan see:
    There will be 4 weekly treatments of Rituxan. Unfortunately, there are some
    very serious side-effects that may occur during the infusion of Rituxan,
    several of which are life threatening. I will be given medication before the
    treatments and monitored closely during the procedure. But, hey, I made it
    through the '60's; I can make it through this. As always, your thoughts and
    prayers are appreciated through this next ordeal. I'm asking Isis to hang
    around and hold my hand.

    June 18, 01

    Dear Brothers and Sisters,
    Though you are probably reading this after the fact, Happy Father's Day to all that such a statement pertains to. To the rest of you, hi.
    Last week was the start of my latest journey into the world of medical marvels. On Thurs. I went in for my treatment with Cytoxan. Like I said before, I have had this drug before in the form of a "cocktail" with other drugs added. By itself it's not too bad. It will drop my red, white and platelet counts down pretty low so I still have to be careful.
    And while I'm sure you know how much I like hugs, if your nose is running just smile and keep your distance. I'll get the hug later. You're not going to run out of them. They are the world's only completely renewable resource. Every time you give one, you get one back.
    My friend, Shelli, went with me to get my treatment and she helped me immensely when it came to keeping my spirits up. Thanks dear!
    Friday is another story altogether. Rituxan is a particularly nasty drug for something that's going to help me so much. Luckily the side effects were minimal and I'm hoping they continue that way for the next 3 weeks. That's not to say that it was a cakewalk, mind you. This stuff drags you down pretty bad. I was first given some benadryl, IV, to try and stave off any allergic reactions. I've never had an allergic reaction to anything in my life and this worked in my favor.
    They also had a couple of shots of something or other (emergency stuff) just in case I needed some immediate action. the benadryl made me very tired and the Rituxan was doing it's best to make me sick. My nurse, Donna, kept a very close eye on me for the first half hour or so to watch for any reactions to the medication. Each half hour she was able to bump up the flow rate if I could handle it. You start out pretty slow on this stuff. I had lots of folks in the room to watch me too. Sueanne gave me a ride to the office and stayed. My mom, dad and brother, Jeff came also. A little later, Sara, her boyfriend and one of my grandsons showed up so I was not lacking in company. I'm afraid I wasn't the best of company though.
    I was in the office a little over 7 hours and got to rest at home a little bit before the gig we had that night. I did sit on a stool while playing and singing for the first time in a long time. Sue and Ray were gracious enough to handle a lot of the singing duties for me that night, so all in all it wasn't too bad. Thanks to those of you who were there that night and helped give me much needed energy during the show. This Fri. I get to do it all over again and then go play at Rooney's in downtown Hpt. (on the deck, weather permitting) from 6-10PM.
    If you count my short little trip with Isis, this is my 4th and 5th rounds of chemo. I have some advice for all of you---DON'T GET CANCER! More on this later.
    I really appreciate the cards and letters from everyone.
    Your love and kindness will help me through this more than you'll ever know.
    Listen to the music you love and love the music you listen to.
    Peace and love to all,

    Nov. 12, 01

    Dear Brothers and Sisters,
    Well, it's been a while since I've written one of these so here goes.
    I've been kinda busy lately which is good. Bay Daze has come and gone and it was one of the best festivals yet. All the bands were great and the weather was perfect. It was my first year working with the Mill Point stage and it was a blast. Thanks to Don Butcher and all my volunteers that came out and made it look easy!
    On the cancer front, I've had a few more treatments since I wrote my last update and I have some pretty good news. The lymph nodes are shrinking!! I have another c-t scan on Monday and the dr. will have a better understanding of exactly how much they've shrunk. I've also got a little bit of bad news as well. I don't have any white blood cells. I'm getting a daily shot of Leukine to stimulate my bone marrow into producing more of those little white ones. I'll know next Thursday if it's doing the trick. In the meantime, I've got to stay away from crowds and stuff. I'm gonna miss those hugs and kisses for a while, but, hopefully, I'll be back on track soon and I'll be able to collect all the ones you've saved up for me. The treatments now consist only of Cytoxan every 21 days. I just had one last Thursday. I should have either 3 or 5 more to go, depending on my progress. I still get tired real easy, but that is to be expected. The Leukine makes me feel like
    I have the flu with all the symptoms except for nausea. Not much else to report right now, but I should have some more news in a week or two after I get the results of the scan. Until then, love each other, hold onto each other and send your positive energy out to the folks in NY and DC, they need it. Oh yeah, don't forget to stockpile hugs, I need them!
    Love and blessings,

    Jan. 8, 02

    Dear Brothers and Sisters,
    It's been quite some time since I've written on of these updates and I guess it's time to fill you in on all the latest developments. I've been doing chemo in one form or another for about 10 months. The latest has been a particularly nasty little cocktail known as ESHAP. Once again it is several drugs given to me over a 5 day period. These 5 days consist of one cycle. I have done 3 cycles and start my 4th and final one on Wednesday. I am probably as close to remission as I have been or will get using chemo drugs. My cancer has been rebounding after each treatment much quicker than before. After the 2nd treatment of ESHAP, the c-t scan showed that almost all my lymph nodes were normal sized. My doctor thinks it is now time to smack the heck out of it. We have put into motion the steps leading to me having a mini-allogeneic stem cell transplant. For those of you that I had contacted before about doing an autologous (using my own stem cells) transplant, I've since opted to try this one instead. This one consists of using tissue other than my own. My brother, Jeff, and sister, Camille are being blood typed to see if we can get a good match. If so, I'll give this a try, if not, I'll probably go with the autologous transplant. The procedure, boiled down a bit, goes like this: After my last round of chemo, I'll be admitted to the hospital. I'll be given large doses of chemo to kill any remaining cancer cells and to suppress my immune system to the max. This is done by "killing" my bone marrow. After 4-6 days of intense chemo, I'll get a days rest before the previously harvested stem cells will be infused into my body. Within two weeks they should be merrily producing new bone marrow and all the other blood cells that I need to stay alive. Even after the transplant is done, I'm still a long way from being finished. I'll be living in a "hospitality house" near the hospital for up to (and maybe longer than) 6 months. Allogeneic transplants are quite a bit riskier due to the fact that foreign tissue is being infused into my body. In this case, the foreign matter being infused is the very cells that fight the other diseases and germs that would normally make us sick. This is a double edged sword in a way. While there is no chance of rejection in the autologous transplant, there is a much higher chance with allogeneic. Here's the two edges: what's left of my immune system may reject the new cells and the new cells may reject me. This is called Graft versus Host Disease (GvHD). And though this, in itself, can be dangerous, it is also part of the treatment in that the new stem cells will recognize any remaining cancer cells as foreign and kill them. The hope lies in that I survive the procedure. This is a stripped down version of what is going to happen and anyone interested in reading more can find lots of material on the web about it. I have been reading a lot in the last week. I do know it's going to be a long and nasty process that has made everything, up to this point (including ESHAP), look like a cake-walk. The recovery process will be long and arduous. During my stay at the hospitality house, I'll need someone to be with me round the clock, not necessarily awake, but to be there in case I am in distress. The hospital provides the transportation from the hospitality house to the transplant unit. My "baby sitters" will need to be able to cook for me, shop for me and help me take care of myself in the months following the transplant. You must be able to put up with a (most likely) cranky and (very likely) very sick individual and be able to do it with love and without killing me with a table lamp or any other heavy object. If any one feels they would like to help, please let me know as soon as possible and I'll get someone to co-ordinate the volunteers into a workable schedule. Please know that any help you can give would be greatly appreciated by me and my family. My good and long-time friend, Perry Pilgrim, is donating his new laptop for me to use while I'm in the hospital so I can still communicate by e-mail with everyone. After I'm moved to the hospitality house, I'll probably have my computer sent up since all my music and stuff is on there. They've encouraged me to bring my guitar and, while I'm probably not going to be feeling much like playing while in the hospital, I sure don't mind hearing someone else playing it while I relax (ha ha) in bed. I'm still not sure of how the visitor thing will work yet. I'm sure it'll be pretty restricted at first, but should ease up after a while. I'll make sure that I e-mail out my phone # so anyone wishing to visit can call ahead to make sure I'm up for it.
    Ya know, if it wasn't for all my friends that continuously show and tell me of their love for me, I wouldn't even consider this. Now don't go getting the idea that I'm doing it for you---I'm being selfish and doing it for me. But at the same time I don't want to leave you. There are still many good times to be had. And there's many songs left to be sung.
    Love and Blessings,

    Feb 1, 02

    Hey everybody,
    Here's a short little update on the quest for a suitable donor for my stem cell transplant. If you didn't know, I've elected to do the allogeneic transplant which uses the donated stem cells of (hopefully) my brother or sister. Matching a donor consists of hopeful donors giving a small amount of blood for typing purposes. Doctors look at 6 particular proteins known as human leukocyte-associated antigens (HLA). These proteins are on the surface of white blood cells and they allow the cells to distinguish my cells from the cells of someone else. A 6 of 6 match is what they want, but they will accept a 5 of 6 in most cases. The better the match the less chance of a reaction (GvHD) and a better chance that my body will accept the graft. (Pay attention...there will be a quiz later.)
    Now for the news part. Yesterday I was contacted by the nurse case manager at MCV and informed that my brother, Jeff, was a perfect 3 of 4 match and my sister, Camille, is a perfect 4 of 4 match. The next step is to further type her blood for the last 2 HLA's and hope that there is a perfect match for them as well. If so, she will be my donor for the transplant. Harvesting the stem cells will be the procedure she will go through next. She'll be hooked to a machine to recirculate her blood. Usually, two lines are used, one in each arm. The blood goes into a machine where it is spun and the stem cells are separated from the other blood products. Thoroughly dizzy, the blood, minus the stem cells, are returned to her body through the line in her other arm. She may receive some preparatory shots of human growth hormone, such as Leukine, to stimulate over production of stem cells in the marrow, which are then pushed into the blood stream to make room for the new ones being made. The procedure lasts two to 4 hours and does not require anesthesia. The number of times this needs to be done depends on how many stem cells she can produce.
    I wish, at this point, I could give you a date for when all this is to begin, but I have had a couple of teeth go bad and they need to be fixed before I can do this procedure. I can't have them fixed until my platelet count reaches 100k. As of Tues., it was at 28k and I will have it checked again on Friday. So, now it seems I'm the one holding everything up. Dental health is very important during this procedure due to the fact that an infected tooth could be a matter of life or death for me at this time.
    Some thanks are in order right now. Of course many thanks to the drs. and nurses at Va. Oncology who have been treating me for almost 4 years. Especially Dr. Scott Kruger, my personal oncologist, and Donna Woodley, my good friend and chemo nurse. Their help cannot be praised enough.
    Jeff Deel and Camille Painter, my brother and sister, who have selflessly offered their stem cells to help me get well. I love you so much.
    All of you, whose cards, e-mails, visits and words of encouragement mean so much to me. Don't stop, I need you. Your love and caring help provide me with the courage to go through with what will, undoubtedly, be the hardest and most trying moments of my life.
    Everyone who has offered to be a part of my after transplant care in the months after the procedure. I am really touched by the outpouring of love shown here!!
    Last, but definitely not least, to my wonderful friend, Christy Hemenway who has offered to co-ordinate all of the volunteers into a cohesive unit to care for me afterward. Words cannot describe how much I appreciate what you are doing for me and how much I love you for it.
    For anyone who needs the info and are planning to help with my care please make sure you have contacted her. After the transplant itself, I will be in the hospital for up to 2 months. It is after that time period that I will need your assistance. Please make sure that Christy has your pertinent information, such as name, home address, e-mail address and phone number(s). Her info is:
    Christy Hemenway
    102 James Landing Rd.
    Newport News, VA 23606
    e-mail- [email redacted]
    [phone number redacted]
    [phone number redacted]
    I'll be sending out another update as soon as I know something, so stay tuned for further developments, right here, in front of your computer.
    Love and Blessings,

    Feb. 3, 02

    Ok, now I know that I said the last update was going to be short and it wasn't, but I'm not lying now. This will be short. I got word at noon on Friday that my Camille is a 6 of 6 perfect match. Now, I get these teeth fixed and check in to the hospital. My platelet count has jumped to 46k from 28k. Vaughn
    Ps. Told ya.

    Feb. 16, 02

    Dear Brothers and Sisters,
    By the time some of you read this, I'll be in surgery to have my mouth work done. I'm going to Hpt. General at 9am to check in for a "23-hour
    observation". It's an over-niter, but due to insurance regs. and the like, they don't call it that. I'm not going to be able to talk very well for a day or two, so no phone calls please. I talked to my nurse case manager at MCV on Monday to give her the news. This is one of my last obstacles for proceeding with the transplant. I don't know when, but soon they should start harvesting my sister's stem cells and within a week or two I should be doing my heart/liver/lung tests to see if I can handle it. I still have to have a Hickman catheter installed in my chest for the application of chemo and other drugs as well as blood tests and to infuse my "second chance". I will send out another update before I check in for the transplant to give you pertinent dates. As the day gets closer, the case manager will give Christie all the requirements for those who will be involved with my care will contact her. Everyone will get the info when we do. It seems like just two months ago, I was telling you that I should be starting in a couple of weeks. (Wait a minute......it was two months ago that I said that!) As this thing gets closer, the fear factor goes up quite a bit. I've never seen this show on the tube called "Fear Factor", but it probably don't have nothin' on what I'm going through. Thanks for your help through all of this, I couldn't make it without you.
    Love and Blessings,

    May 17, 02

    Dear Brothers and Sisters,
    I was fully expecting the next update I send out to have the dates of my transplant included, but that is not to be. Once again, the fickle finger of fate has dropped a load on my hopes. It seems that I have a stubborn lymph node that didn't respond to the ESHAP as planned. I have received word from my oncologist that Dr. McCarty, at MCV, wants to do some more chemo before going ahead with the transplant. This will involve a drug that I've already done fludarabine and bryostatin-1. I've done fludarabine before (2 1/2 years ago) and tolerated it well. The reading I've done today on bryostatin-1 seems to indicate muscle pain as the only side effect. The neat part is that it is a cell specific drug and makes the cancer "commit suicide", so to speak. (This is good compared to the "street-sweeper" types of chemo I've been doing. They target all the cells and leave you pretty wasted and worn.) What is really interesting is where bryostatin came from originally. Bugula neritina is a coral-like critter called a bryozoan. Found in Monterey Bay and as far south as Baja, CA (and other temperate waters), they live in 2-3 inch colonies on pilings and sheltered rocks. These colonies are made up of thousands of these half-millimeter animals that produce the drug in their tissues. They've also been known to foul boat hulls as well. (Steve and Val, no more scraping the bottom of the "Barefoot'n" without a bucket to catch any of these guys.) There's a drawback to using these creatures to make the drug--it takes about 14 tons of these guys to make a half-ounce of bryostatin. Not very promising for the Begula neritina community. Anyway, to make a long story a little longer, modern science has figured out how to synthesize this stuff. It's not a simple or short process, but the dosage is much more reliable. I'll probably do 3 treatments of this drug. It is a Phase I study and I am lucky enough to get into it. I probably don't have to tell you that, right now, I feel lower than a snakes belly. I'm starting to feel like the boy who cried wolf. The waiting and not knowing is as stressful as any of the treatments I've done to date. And we all know how good stress is for an immune system. This treatment is in preparation (still) for the stem-cell transplant. But it looks like it's gonna be put on hold for another 3 months or so. A couple of treatments and another scan and if it's having desired effect, then it's on with the transplant.
    To all of you who call, send messages and inquire about my health, please know that it is appreciated. I would much rather this update was coming from the hospitality house with me recovering and getting stronger every day. I promise--I will be sending out that update as soon as possible. I'll send out at least one more update before the transplant and let you know how this treatment has worked. So until then, enjoy life and love each other.
    Love and blessings,
    "Dance like it hurts, love like you need money, work
    when people are watching you."

    July 3, 02

    Dear Brothers and Sisters,
    Well, it looks like it's finally gonna happen! Today I had a bone marrow
    biopsy and several vials of blood drawn for various tests. Next week I do a
    MUGA scan (go here for some info on the scan itself:
    http://www.chclibrary.org/micromed/00057230.html ) and pulmonary function, blood gases and lung capacity tests.
    If I pass all these tests, then I will be going to MCV to start my mini-allogeneic stem cell transplant on the 23rd or the 24th of July.
    Some time real soon, the harvesting of my sister, Camille's, stem cells will begin. Needless to say, I'm kinda excited and apprehensive at the same time. After checking into the hospital I will begin a five day chemo treatment consisting of fludarabine, for the first four days, and cytoxan for the fifth day. I've done both of these drugs before and tolerated them well. I will not have to do the radiation after all (YAHH!!!).
    As I had mentioned before this procedure will NOT kill my bone marrow, but will kill my immune system instead. Camille's stem cells will be used to build me a new immune system that will recognize the cancer as being foreign and kill it. The medical community considers a five year cancer-free survival to be a cure. It may not be a permanent cure, but could, indeed give me enough time for some of these new "wonder" drugs to be developed and tested. They may eventually lead to a permanent cure. Let's hope for that. There will be a fairly long recovery period from this. Expenses are going to be massive just in the case of anti-viral, anti-rejection medications, and a plethora of other drugs that I must take to survive. The main things I have to worry about right now will be infection and rejection. So look around now and see if you have a few thousand dollars laying around that you aren't using right now. Check in the couch cushions and under the seat of your car. Large checks and stock options (preferably not Enron or WorldCom) may be sent directly to me.
    I want to give a special thanks to all the people responsible for helping me
    get some new teeth this past weekend. You are too many to mention here and you know who you are. I love you very much and I'm humbled by your love and caring. (sniffs back a tear)
    Soon, I'll be asking that you don't send me any mail for awhile unless it is
    something that you feel I must see. I will have a computer while I'm in the
    hospital (Thanks Perry!!!), but I'm not sure how I'll work my connections out yet and all that stuff. I don't want to get my mailbox too stuffed for me to
    answer all of you. I don't like thinking about this, but in case something
    happens, Sueanne has my address book and will let you know if the unthinkable gets thunk. This isn't going to happen, I'm just covering some bases, ya understand.
    There will be at least one more update before I go in. Please feel free to
    forward this mail to anyone you think may be interested. As always, love and hold onto each other.
    Love and blessings,
    "Dance like it hurts, love like you need money and work when people are
    watching you."

    July 22, 02

    Dear Brothers and Sisters,

    Well, it is finally here. Today, July 22, my sister, Camille, is in Richmond having her stem cells harvested. This is a pretty cool birthday present. I will go to Richmond on Friday at 7am and have a Hickman catheter installed in my chest and then check into my room and start doing chemo. It's been a long wait and I'm as ready as I'll ever be. I've found out some more stuff about the visitation and all. I am allowed to have visitors anytime at the hospital. Visiting hours are from the morning until 11pm. I can have up to 3 visitors at my bedside at any time. Children under 8 will only be allowed for 1 hour. Please do not come if you have any sickness of any kind. Sniffles, coughing, sneezing and all that stuff. I cannot have fresh fruit or vegetables. No fresh or cut flowers or fake flowers with moss in them. Fake moss would probably be allowed unless poisonous spiders are hiding in it. Fake spiders are acceptable. Also, no flesh eating bacteria. Cleanliness will be the most important practice you (and I) can indulge in. My room will be located the North Hospital on the 10th floor at 1300 East Marshall Street. I don't know what my phone # will be at this time. I also do not have an address for the hospitality house either. I'm sure Christy will have that info shortly. Since I am doing the mini-allogeneic transplant, my hospital stay should be much shorter as well as the hospitality house stay. Hopefully only a couple of weeks in the hospital and a couple of months in the hospitality house, barring any complications (but we're not going to think about that, are we?). For those who are going to be my ATCT (After-Transplant Care Team) here is Christy's contact info for co-ordinating my babysitters.

    Christy Hemenway

    102 James Landing Rd.

    Newport News, VA 23606

    e-mail- XXXXXXXXX



    I'm not really sure how all this part is going to be worked out and I'm trying not to concern myself with it much. I need to direct my energies to healing now. If you have already volunteered and given Christy your contact info, I'm sure she will contact you when she has all the pertinent information. If you want to volunteer now, contact her and let her know when you would be available. I have to have someone with me 24/7 to help me with all the basics of housekeeping, shopping, cooking and stuff. Anyone who can't stay overnight may want to find out when they could come up to just relieve whoever is on duty so they can get away from a cranky old guy for a couple of hours. Once again let me thank everyone in advance for all that you have done up until now and all that so many of you will do for me later. I love you all very much.

    I will ask that you send me no more e-mail after Wednesday until you hear from me again and I am able to handle the volume of mail I normally like to get. If it's something you think I must absolutely read, please send it along. If it's a joke it better be funny and not something I've seen before. Small notes are acceptable, but don't expect an answer right away. My mail account is only a couple of megs and I don't want to get it crammed full when I don't feel like messing with it, understand? I knew that you would.

    I'm sure that many of you have as many questions as I have, but I don't know all the answers yet. Anyway let's get on with this and I'll talk to you all soon.

    Love and blessings,


    Cancer Sucks—Day Minus 6 July 27, 2002

    Dear Brothers and Sisters,
    I’ve decided to keep a daily record of this, whether I send it out every day or not. I may send a couple of days worth at a time. Today has been pretty uneventful, except for Betsy coming by and visiting for a while. Cheryl also came by and visited for a little while. She lives up here so it’s not a long trip for her. Thanks dears. I need those visits.
    So far the fludarabine has had pretty much the same effect that it did two ½ years ago, mainly nothing. I don’t mind this at all. There is a change though in the treatment. I thought I was going to get the fludara for 4 days and then the cytoxan for 1 day. While reading the protocol order I see that I get the fludara for 5 days and the cytoxan for 3 days. When I did fludara before, it was done 5 days in a row with a 21 day break until the next cycle. The cytoxan was only done once with a 21 day break. This should be interesting. I never had any real trouble with the cytoxan before, but I never did this much of it at once. There are an abundance of other pills and fluids I take every day that are just too numerous to list here.
    Today’s dose of fludara has just ran out so that’s 2 down. Soon I’ll be wearing one of those little masks on my face all the time so I can’t breath any “bad” air. I guess you will too if you come to visit.
    The food is pretty bad, for hospital food. I have learned to order a bunch though. I ordered what I thought would be a decent breakfast for this morning (remember I’m used to Denny’s at 3 in the morning after a gig) and I got almost enough to feed a hamster. Luckily I had a late breakfast and lunch wasn’t far off. But it seems I had not ordered enough for lunch either, according to what I ordered for breakfast. First I noticed that I had a large lunch and then partway through my meal, I realized that this is not what I ordered. I had baked chicken and had ordered a roast beef sandwich. I knew now, though, that I should order at least 3 vegetables and a couple of starches and a couple of fruits in order to get enough. The vegetables are canned and over cooked, but this is the nature of the food I must eat. I like my veggies just barely warmed up with all the crunch left inside. This is not what I get here and will not be what I get for a while. I am allowed to use salt (which I never use anyway) but not allowed to use pepper (which I always use). Due to the fact that pepper is grown on trees cleaned and then crushed or ground, it is not a good food for me due to the possibility of fungi and other such stuff growing in it. I’m really gonna miss that stuff! But I know what I’m going to put on the next medium-rare steak I get to eat! The fruit choices I get are sliced peaches, sliced pears, fruit cocktail, applesauce and Mandarin oranges. Unfortunately the choices I want they don’t have. I want the oranges and the cocktails. They have neither. Bummer. More tomorrow.
    Love and blessings,
    (You know who.)

    Cancer Sucks—Day Minus Five July 28, 2002

    Dear Brothers and Sisters,

    Today they started the new chemo, Cytoxan. Not new to me, but getting it 3 days in a row is new to me. I’m hoping that I don’t have any problems with it. This one will definitely drive my blood counts down. Waaaayyyy down. Fortunately, it’ll be sometime next week before this will take effect. I’ll be getting shots of growth hormones for that and probably be getting some transfusions as well, such as platelets and white cells. Some had asked if they could give blood to be donated to me. The answer is yes, but it has to be donated within a certain time or the blood will enter the general blood population. If you give blood or blood product donations regularly, just keep doing it. It’s a good thing, as Martha would say. (Just don’t take stock tips from her.)
    I’ve got the meal thing worked out so that I finally get enough to eat. Now that I’m taking the steroids again, I have to eat or else my stomach hurts all the time. It’s one of those “snack all day long” sort of things. I asked today about the oranges and was told that I can have outside food as long as it is canned and it is something that is on the menu and they don’t have it in stock. Well, Sueanne and Gail are coming to visit today and I told them to stop and buy a bunch of the small cans of Mandarin oranges. They will just put my name on them and keep them in the kitchen. I’m really hoping I can keep my appetite up ‘cause I’m really gonna need that extra weight for a while, especially if I get sick from any of this. I’ve been pretty lucky for the last 4 years in that I haven’t experienced much nausea at all and what I did was handled with drugs pretty easily. So let’s hope that it works the same way this time.
    The TV in here has cable so I’ve got lots of channels to choose from but the only TV guide is the cable guide. The TV remote does not have a reverse for channel selection (or a keypad for that matter). Just a button that says “TV”. It’s part of the nurse call/ room and reading lights control. Sueanne is bringing my remote from home that will control several devices at once. There is no remote for the VCR, but I’ll fix that this afternoon. I was told that it was just this year that they got cable TV on this floor. There was a woman who worked for over 10 years to get it in here and finally it’s here. She deserves a plaque on a wall somewhere. The hospitality house has cable, but no televisions. It’s a BYOTV&VCR. I got that covered though. Mine is disconnected and ready to be brought to me when I move. Now I know why I don’t like watching the tube. But not a whole lot more to do here. At least there is Discovery/Learning/ PBS/History. I’ll get my computer and have a stereo as well. There is the boombox here, but my computer has lots of music on it plus a DVD player.
    More later,

    Cancer Sucks—Day Minus Four July 29, 2002

    Dear Brothers and Sisters,
    Hospitals are boring. Trying to cause excitement around here only gets you strange looks. I’ve learned how to scare a couple of the nurses. Only the new ones though, the ones that have been around a little longer tend to appreciate my sense of humor a little better. I think the thing that bothers them the most is when I pull out my camera for each new person that comes in the room and I take their picture. When they ask if this is for my journal, I tell them that it is for my attorney. They don’t get it. They will come around eventually. I am intent on showing how this is to be done, as a good friend told me to do. I told Harold Chung, one of the doctors, that and he likes the attitude. Therefore, I am hereby setting the standard for stem cell transplants. If you do it this way you will come out all right.
    Sueanne and Gail came up yesterday and spent the night in a motel and came back before they went home. Gail is coming back tomorrow as well. It’s nice to have visitors even though I’m not the best of company right now. Maybe some more words later tonight.

    Well, it seems that the catheter I had installed was a Quinton catheter instead of a Hickman. The wrong one but it will work just as well. Just a little thicker than needed. They are talking about using a portacath later, which is a small catheter that is located just under the skin. It doesn’t need daily cleaning and still can be used to deliver chemo, medications, for blood withdrawal and many other uses without limiting many activities. I’d be able to do many other things without the worry of infection. It would be much easier on my veins so it sounds like a good idea to me. One more day of chemo and then I will have the stem cell infusion on the 2nd. It looks like I’ll be moving into the hospitality house on or about the 9th.

    Cancer Sucks--Day Minus Three July 30, 2002

    Dear Brothers and Sisters,

    Let me clarify something I put in my last update—I will not be discharged on the 9th instead it should be on or around the 16th. I’m not sure where I got the 9th from but it is wrong. After thinking about it, only one week after the transplant would seem a little early to move to the hospitality house. Thanks to Theresa for keeping me straight on this sort of thing. She’s such an asset to this hospital. Especially this unit.
    Today is not a real smiley day. I don’t feel bad, just don’t really feel at all. This stuff is catching up to me. It’s not hard to take, a day at a time, but when it’s day after day, the cumulative effect is a little rough. Don’t get me wrong….my spirits are good and I know the positive effects this is having on me. This is the last day of chemo…hopefully for the rest of my life. I don’t want to do it anymore. I’ve had enough in 4 years to last a lifetime. The purpose of this treatment is to “cure” my disease so that the chemo will be unnecessary. I don’t know if that will be the outcome, but that is my hope. If it isn’t what I hoped for we will address it at that time. In the meantime, I’m keeping my fingers, toes and eyes crossed that this is the last chemo. The ESHAP was much worse, but none of it has the “fun factor” built in. (Note to researchers: Build “fun factor” into future chemotherapy treatments. Let’s keep the patients interest up!)
    Appetite is down today, but I expect this about now. I’m hungry but just don’t want to eat. I’m sure there is a flurry of activity in my bloodstream, but the rest of my body just wants to stop and rest for a while. If I could only get the brain to go into rest mode as easily as the rest of me, this would probably be over before I knew it. But, NO, my brain says, “I’m here and I’ve got things to think about!” , so I’m just along for the ride, so to speak. I’ve been on better roller coasters, let me tell you.
    I’ve got an array of tubes stuck on me that makes me look like an aquarium. I am waiting to wake up one morning and find a little treasure chest on my stomach that opens and closes and the little diver with bubbles coming out of his helmet. For those of you that are not getting the pictures I send, you’ll just have to imagine it. I don’t know why the pictures aren’t coming through to some of you but are to others. ????????? Oh well, could be just a hotmail thing or something else. If you are not set up to receive attachments that could be the problem too, but some of you have said that you haven’t received them and I know you have received pictures from me before. I’m not going to worry about it too much right now. I have the pictures….you wanna see ‘em? Come see me!
    Gail came back up today to visit and Dan McFarland is coming by this evening for a little while. It’s nice to see familiar faces every now and then. Of course, the faces I see daily now are becoming very familiar and it’s a pleasure to see them as well. The people here are so nice and caring. I have never been in a place where everyone treats you so wonderfully. Hope I never have to do it again.
    One more bag of poison and I’m done.

    It’s a little after 5pm and I’m done with the fludarabene. That’s it for the chemo in this treatment. I’ll get the transplant on the 2nd and start all over again.

    I started acyclovir today. It’s an antiviral drug used, of course, to help me keep from getting virii during the coming months. I’ll take this for 100 days.
    I hear on the news that the miners that were rescued in Pennsylvania this weekend will be paid overtime for the time they were in the hole. I wonder exactly how they are going to figure this out. Triple time, quadruple time…..should be interesting….do they get paid for missed lunch breaks? Inquiring minds want to know.

    Love and blessings,

    Cancer Sucks—Day Minus Two July 31, 2002

    Dear Brothers and Sisters,

    Except for the doctors, nurses and aides, I have the cleanest hands in Richmond. I can not scratch my XXX without washing my hands first. I guess this is a good thing. It keeps me from scratching germs into my skin or various orifices and making me ill. Today is just fluids. And a few pills now and then, but no chemo and just hydration fluids to make sure all my fluid levels are good. Yesterday and last night were a little rough. I slept a lot in bits and pieces throughout the day and during the night would get stomach cramps and waves of nausea. Finally about 4:30 am I was “shouting at my shoes”. A little ativan IV and all that was gone and I was sleeping peacefully the rest of the night. Today has been much better. I have sat here and watched the food channel and dream about all this food I want to be eating. In a few more months I’ll be back to eating all that good stuff. In the meantime I’ll be stuck with what they serve here.
    Sue Sillery came by to visit me today!!! She looks so awesome! It is always good to see her. We have been friends for a longer period than our ages show. Her smile and attitude is exactly what I needed today. Thank you so much Susie!!
    John and Pat Ward stopped by today as they left for their vacation, which will culminate in the old time fiddler’s convention in Galax, VA. John didn’t bring a guitar up with him so we didn’t get to jam any today. Next time, bro’. I was feeling good enough to break mine out and pick a few tunes. I just shut the door and started playing. Coordinating two hands to do a job together is an easy thing to do. When you are playing guitar it becomes a little more intricate in that you must coordinate individual fingers on different hands to do the same and sometimes different things at once. Looks pretty easy some times, but try it when the stuff they give you makes your hands feel like they belong to two different people.
    It’s still another lazy day and I’m kinda kicked back and watching tv and listening to music. I enjoy the e-mails I’ve been getting, so keep it up. Watch all the forwards or at least clean them up before sending them. Let me know I have a great programs that will clean up all the broken lines and the little >>’s out of it for you when you paste it into the body of your e-mail. Works great!! Wonderful little program that Don Butcher gave me.
    More a little later.
    Didn’t eat lunch until late ‘cause of the queasiness of last night. I’m glad I’ve downgraded the food supplies to lower amounts. Wandering the halls doesn’t give you much exercise and the exercise bicycle in my room has no resistance to the pedals. It’s more of an exercise in flailing. I can do that on my own, thank you.
    Yes today has been much better. Easier to smile and great to talk to those of you who have called and come by. Another day done gone.
    Love and Blessings,

    Cancer Suck—Day Minus One August 1, 2002

    Dear Brothers and Sisters,

    Tomorrow is the day that the new stem cells are infused. Kinda anticlimactic really. Just another bag of fluid being dripped into me while I sit here and do whatever it is I am doing. Yesterday was a much better day and I only experienced a little nausea last night. Adjusting my food intake is helping that. I can’t eat as much, ‘cause I’m not doing as much….easy enough, eh?
    Today I started taking Tacrolimus. This is the immunosuppressant that I will be taking for about 150 days or so. Maybe more, probably not less. This can be a particularly nasty drug for side effects some of which can be found at this page.
    I’ve been pretty lucky most of my life in not getting most of the side effects listed for any medication and I’m hoping it still holds true today. This one doesn’t sound pleasant at all. I guess I’ll just ride it out and see what happens. Now that I’ve started this drug, I’m not allowed to wander the halls anymore. This is also the one that makes is so important that you are not the least bit ill when you come to visit me. Now is when my immune system is at it’s most vulnerable so please keep that in mind.
    This is the “go-between” drug that will allow my stem cells and marrow interact with Camille’s stem cells without too much harmful GvHD. By adjusting this medication, gradually, over time, it will allow her cells to eventually take over without both our immune systems clashing and killing me….this is the point, right…..right….? Even if I’m getting these descriptions right, I know (and I’m sure you can tell as well) that I am simplifying them to the utmost just to make them understandable. For myself, I’m glad that I have a group of doctors coming in to see me every day that understand the mechanisms of medicine enough to keep me alive.
    I have a wonderful team of people that come in every morning, check me out, smile a lot and then probably go out and talk terrible things about me. In no particular order the are Harold, Rosemary, Churi, John and Heather (who swears she’s a fellow, but don’t let her fool ya!). These are friendly doctors who are experts in what they do and are giving me the best care without laughing in my face. They do smile a lot and are quick to answer questions. Now, how well can they tell a joke? That is tomorrow’s test. Each gets to tell me their favorite joke. If it doesn’t come to mind, I will give them a day. After all a favorite joke can take a while to determine…..there are so many good ones. They will get their chance. I don’t think they’ll allow me to tailor my team on the basis of their sense of humor though. As long as one of them has a sick sense of humor, I feel I am safe.

    Another new doctor this afternoon, blonde, Scandinavian, her name is Elke, ‘nuff said.

    More visitors today. dad and his brother, Garner showed up for a while. Later, I was really surprised by Valerie and Patrick!!! What a great surprise! They both attend school here at VCU, so they are close by anyway. Then Cheryl stopped by for another visit. I spent a lot more time with the guitar today trying to keep the hands working plus it just feels good! Now if I can just get it to sound as good as it feels!
    Love and Blessings,

    Cancer Sucks---Day Zero August 2, 2002

    Cancer Sucks—Day One August 3, 2002

    Dear Brothers and Sisters,
    Ok, for those who can’t or don’t receive pictures, the update for Day Zero was nothing but a photo of a bag of stem cells as they dripped into me. The build-up to the moment is much more than the moment itself. Don’t get me wrong, it is an exciting moment, but, somehow, that shot of benadryl they give you to stave off an allergic reaction takes away from it a bit.
    Gail came up and got here right before the transplant took place. She sat with me the whole time. The “team” came in to infuse the cells. They brought a little cooler with 5 bags of stemcicles. Five 60 ml bags with frozen stem cells. They were then placed, one at a time, in the handy-dandy Ron Popeil “Stem-Cell Steamer” and brought up to drip temp. I sat there and watched the first two bags drip, trying to think profound thoughts about this being my new birthday and how “life anew” was dripping into my veins and starting a brand new life and other philosophical stuff but the benadryl got to me about then and I just said “XXX it” and slept through the rest of it. Someone told me it would be kinda anticlimactic…..they were right. Still, it was pretty awe-inspiring through the haze. And hazy it was. I slept. Gail left right after they were done. Mom and dad got here shortly after and I slept through their entire visit. I slept through dinner. I slept until about 10 at night and then I was awake all night long. I couldn’t go back to sleep. And was I ever hungry!! I slept through my dinner and had the nurses running back and forth all night long bringing me ginger snaps and iced tea.
    I’ve slept all day. I can’t wake up. Every time I open my eyes for more than a few minutes, I find myself drifting back to dream land. Jeremy and Shannon came by and visited today. Lets see what tomorrow brings.
    Love and blessings,

    Cancer Sucks—Day Two August 4, 2002

    Dear Brothers and Sisters,
    I finally slept last night. I tried to stay awake but it wasn’t going to happen. I ended up getting a shot last night so I could sleep through the night. I actually got a whole nights sleep for a change. Well, except for when they wake me up every two hours for vitals or meds or whatever. That’s the hard part. Once I’m awake, I’m awake and falling back asleep is usually not an option, or I don’t fall asleep again until time to wake me for the next set of vitals. Not a fun way to spend the night. They’ve informed me I can have sleep drugs when ever I want them, but I’d prefer not to use them.
    Sueanne, Denise and Perry came by today. Nice visit with them. They were in great spirits which was good, ‘cause I keep forgetting that I don’t have to entertain my guests. Sue brought some more oranges. The last ones went awfully fast. They are about the best tasting thing I get to eat, even if they are canned. Not eating regular food REALLY sucks. It’s gonna be a long time before I get that stuff. I’d be happy if I could just put pepper on my food, I’d be much happier if I could have some hot peppers. Just some mild banana peppers would be good. I need to feel my mouth burn. Hospitals do not build in endorphin rushes either. I see a future need here. Harold and I have discussed several things about this transplant and since I am setting the new “gold” standard for mini-allo transplants, these will be figured into future treatments based on patient need.
    Love and blessings,

    Cancer Sucks—Day Three August 5, 2002

    Dear Brothers and Sisters,
    I got my first transfusion last night. I wasn’t expecting anything this early. During previous chemo treatments, my blood levels dropped pretty low, but it was never considered low enough for a transfusion. I got platelets last night. The level was 48k, which to me wasn’t low at all. (I hit as low as 17 or 18 with the ESHAP and no transfusion, though they said I would if I hit 15 or 16.) It’s just part of this protocol. If my platelets fall below 50k, I will get a bag of them. I won’t get anymore unless if falls below 30. They just now took some more blood so I’ll know what the levels are later. My white levels are down around .1, but still not low enough for the leukovorin. If tonight’s readings are low enough, I’ll receive it tomorrow. They’ve adjusted my immunosuppressants up a little so I have a little higher level in my blood stream. This is just the first of many adjustments that will be made over the next 150 days. In the next couple of months they will be adjusting it in a way to set up the graft verses disease effect.
    Love and blessings,

    Cancer Sucks—Day 4-5-6-etc (Day 16) August 18, 2002

    Dear Brothers and Sisters,

    Day after day runs into one another and all becomes the same day. The only thing that breaks them up is that Heather came by today (or was that yesterday) and Lassie and Frankie came by tomorrow or was that today. Carol Butler came by and we had a great visit. Walt and Sandy Redmond came up with Sueanne on Thursday and Walt brought his guitar. We jammed for a half hour or more and Sueanne sang. I tried singing a little bit, but my voice isn’t used to doing much of anything here lately. Anyway we picked a couple of blues tunes and Sue and I did “Don’t Think Twice It’s Alright” which is the whole reason I learned how to play the guitar. Not so much Dylan’s version but the way my friend John Sines played it one night in my bedroom when I was but a teenager. My fate was sealed that day and I knew from that moment on that most of my life would be “wasted” playing six strings. Toward the end of the song Walt was adding some really tasteful fill licks, but I was getting real tired. We stopped picking for a while and talked about stuff back in Hampton. After they left I got up and went to the restroom to wash my face and hands and by the time I got back to the bed, I was out of breath and had some serious chest pains going on. I called the nurse and within minutes I was hooked up to all kinds of machines; an ekg, automatic bp tester, pulse and oxygen saturation gizmo and a machine that goes “ping”. Pumping more fluids and no real results as to why. I felt that it was due to the fact that my bp medications had been stopped a few days ago. Just that day my bp was 80/50 that’s a little low, but even with the meds stopped, my pressure was in the perfect range. I also developed a headache. These are very rare occurrences for me. You could count the total headaches I’ve had on both hands. These were headaches that called for the heavy guns. Morphine took care of it rather well.
    Shortly after getting all hooked up to this new equipment. The Roberts Girls came by. Jean, Robyn and Pygen and I had a pleasant visit other than my shortness of breath. A few minutes later a check on my lungs revealed fluid collecting; enough that I could hear it while taking deep breaths and long exhales. This brought on the Lasix, a pretty powerful diuretic that will make you go to the bathroom about every half-hour. This stuff helps eliminate all unnecessary body fluids. By the next day it was all sounding pretty clear. The only bad thing was that headache thing would come by and visit about 2-4 every morning. Shortly after that mean ol’ Mister Nausea would poke his head in and announce his presence. A shot of morphine and a shot of ativan would put those guys in their places for a few hours.
    Now I’m getting sleep, but I’m not getting rest. I’ve got fluid on my lungs and I’ve had a total of five platelet transfusions and I’m due to be released from the hospital into the hospitality house the next day.
    (Cue heavy organ music.)
    Meanwhile, back at the lab on of the tubes of weekly culture blood has grown some stuff in it. Luckily for me they draw two tubes for each test just in case one is contaminated by accident or by some unseen method. One of them growing little critters is a bad thing, but the other one grew nothing, which is a good thing, but doesn’t stop them from giving me antibiotics anyway. In my case, and the case of everyone else on the 10th floor, this is a good thing. Infection and rejection are our enemies. I’ve not shown any signs of infection either, more good news. Further down the hall there is exaltations, my white count which had hung around 0.1 for days, was moving, next day 0.3, then 0.5, then 1.2 then 1.5 and today at 2.3. I’m pretty optimistic about these numbers and so are the drs.

    So I moved into the HH on schedule Friday afternoon. Nice room with a view of the Richmond Coliseum and trees and stuff. Not a bad view considering the wall that was my last backdrop. Nice large bathroom and shower. We have a kitchen right outside my room which is cool. The phone service leaves much to be desired I cannot make outside calls from my room, bummer, since this means bringing my computer up is not really cool. In order to use an internet connection I have to go to the 1st floor (I’m on the 5th) and disconnect their “cash-register” so I can hook up this laptop. Computer time is considered first come first served commodity and they ask that you limit your time to an hour and letting someone else have a go. I sat in there for 2 hours this evening with no interruptions. Since I’m a bit of a night-owl anyway, I’m sure if I would go down there at 2 in the am, the list will be very short.
    Maria Baker and Dane Jablonsky showed up for visit. I hadn’t seen either of them in a while and that was a pleasant visit.
    Betsy Kennedy is my caregiver at the moment. She’s been helping Christy coordinate my after care and she’s been a wiz at it so far. I put her to the test of fire on the first night out. It seems, at 4 am, my head decided to pull an ache of about 8 on the Richter scale. Of all the meds they sent me home with, none were pain meds and neither Betsy nor I had a Tylenol between us. So, shortly after we were sent a courtesy car from the hospital and soon we were on the 10th floor talking to the nurses and getting a shot of much needed morphine and a script for some take home percocet. I just stayed for my daily lab work and found my counts climbing steadily again. This will be a daily occurrence (lab stuff, not headache stuff) as soon as I get to the point where I don’t have to have transfusions once or twice a week or booster shots for my blood on a similar time schedule, then I may come home. I’m shooting for an early release, ‘cause, like I said before, I’m shooting for the new “gold standard” for mini-allogeneic stem cell transplants.
    Well, it’s Sunday morning now and last night I followed Dr. Harold’s suggestion and pre-medicated myself with the percs before bedtime, but added one of the anti-nausea pills as percocets tend to make me a little nauseous. Best night of sleep since I’ve been up here! Makes me happy.
    Rose-Marie Seawall should be here today. I haven’t seen her in a while and we should have some good laughs. Then I get one of my old hippie buddies Steve Trivett for a few days. And Shelli should be up to visit today, too bad I can’t eat it or I would have asked her to bring me a French Silk pie. Hers are so XXX good!! I love your pie, baby!
    Anyone interested in calling can call my cell at[phone number redacted]. I’d appreciate it if you would keep these calls after 9 at night. I’ve got tons of night and weekend minutes, so all day Saturday and Sunday are good. The # to the hospitality house is[phone number redacted]. That gives you the front desk and just ask for room 515. Those within this area code, use that # and those with cellphones and free long distance use that one before 9 and my cellphone after 9. My area code is 757 on the cell so it’s not long distance for folks in my neck of the woods. Keep in mind that I love visitors! Especially ones carrying guitars. The address is 612 E. Marshall St. This is only a few blocks from the hospital. There is parking at the hospital and none here except for the Marriott parking garage behind the hospitality house and they charge $2.50. If you leave, though, they charge another $2.50. But this is very close. Now, I find out that there is an area with free parking for bone and stem cell transplants at the hospital but times for the shuttle are kinda weird. Oh well…….
    I do have to go to the clinic at the hospital every day for blood work and stuff. If the blood work shows all right and I’m not having any problems then I’m free to go back. Between here and the HH there is the VA Library that has an exhibition called VA Roots Music. I plan to visit this several times. I am allowed and encouraged to go out and do things, such as movies, useums, etc., at places that aren’t too crowded. Just wear a mask and go. It’s necessary to try and gage my strength for the activity. I’ve noticed over the past several years that, when I run out of gas, it is sudden and I need a place to rest for quite a bit.
    I’ve started the hair loss thing again and it looks like it will be total this time. I brought several hats with me.
    That’s all for now. I think writing a daily review now is a little bit of overkill and probably detracts from what I’m trying to do with this journal (if anyone can figure out what I’m trying to do with this journal then by all means let me know!) I think I’ve probably used up my entire lifetimes worth of !!!!!!s
    and ( )s if so I’m borrowing some from those of you who know how to write properly. Or I could just