Merry Christmas

Every once in a while, something happens that stops me dead in my tracks. Today, when I got home from the last of my last minute shopping, and finished up my wrapping, I decided to lay down for a nap. I've been running pretty hard lately and can feel myself wearing out. However, before crawling into bed, I decided to check my email. And that's when it happened.

I received an email from someone I didn't know with the subject line, "fellow cancer survivor...." I won't disclose her name because I don't have permission to, but the email blew me away. She told me she was diagnosed with Hodgkin's Lymphoma at the end of the summer and underwent chemotherapy. In her November followup, she had already relapsed and is preparing to undergo an autologus stem cell transplant. She was looking up BEAM chemotherapy on the internet and ran across this blog.

After reading the blog, she wrote to say thank you for sharing as I went through the process and could I answer a few questions for her about the treatment. I responded with my best answers and told her she was in my prayers.

What blew me away was that, for just a moment, I realized that although my fight is over for the time being, for so many it continues regardless of the holiday season. Cancer doesn't care about Christmas or Haunnaka(I think that's spelled wrong, I apologize), it doesn't care about glad tidings or caroling in the snow. But the patients who face it do, and because of the cancer I would venture to say most are probably like me and know that the carolling, the good wishes, the glad tidings are more valuable gifts than any under any tree.

For that reminder, I will always be grateful for the fellow cancer survivor who reached out to me on the eve of her treatment to ask a few simple questions. She's got a great chance. She's young, strong and full of hope, and this Christmas, she's in at least my prayers as well.

So in the midst of all the pagentry and regalia that go on during this wonderful season of love and forgiveness, pause for a moment and see what the true value of the season is to you. To me, it's a simple, wonderful opportunity to share the preciousness of life with those who are closest to me, and to be grateful for the opportunity to be alive.

Best of luck to you Fellow Cancer Survivor, and Merry Christmas, Happy Holidays and Happy, Healthy New Year to all.

Much love,

Travis

Leukemia Cup Regatta Fantasy Sail

This past weekend, Honore and I attended the 2008 Leukemia Cup Regatta Fantasy Sail with Gary Jobson in Ft. Myers Beach, Fl. We had a BLAST! We got to race Colgate 26s(Which the Colgate Offshore Sailing School provided 10 of for us) in two sessions. A morning session of four races, and an afternoon session of three races.

Our crew raced in the afternoon session, and with me at the helm , we raced our way into 2nd place out of 9 boats. Gary Jobson came aboard and raced the final race with us, which was AWESOME. Talk about a truly amazing opportunity, to get to have a Hall of Fame Sailor come on board a 26' sailboat and race with us was unbelieveable.

It was great to see our friends from around the country. This was our fourth Fantasy Sail, and we have gotten to meet so many other sailor fundraisers from around the country it has been an amazing experience. What we have found is many of the same people return year after year, so it has become an annual reunion of sorts. (To qualify, one must simply raise $8,500 for the Leukemia Cup Regatta, its that easy.)

We also received information about the fundraising. This year, there were 38 LCRs around the country which combined to raise a record $3,675,000 for blood cancer research. The best part, to me anyway, is that 85% of that will directly fund research. The top fundraising chapter was Greater San Francisco Bay Yacht Club, which raised over $660,000. Incredible. My hats off to Ian Charles, Bill Nolan, Bill Elliott, and Kyle(I'm so sorry I can't remember his last name, but he's the incoming Commodore of the club). Anyway, Ian had a stem cell transplant in October and was scheduled to attend the Fantasy Sail, but fell ill on the Wednesday before and was unable to travel. They had the Maltese Falcon, the new $200M square rigged ship that is one of the largest private sailing ships in the world for their event, and from the sounds of it, it was incredible.

Houston chapter finished second this year and Chicago finished third. We did TERRIFIC. In a down year, we still managed to set a new record and raised $285,000. I am very proud of the committee, the LLS Staff and Columbia Yacht Club, as well as all of our sponsors and the other area clubs and participants who come together every August to make the event happen here in Chicago. It takes a year of effort, but it is one of the most rewarding things I participate in.

Yesterday, I had lunch with the outgoing Executive Director of the Illinois Chapter of the Society and the incoming event manager for the 2009 Leukemia Cup Regatta. I did commit to running the organizing committee one more time, although I made noise that this will be my last at chairperson. Having chaired the previous two years, I feel its becoming time for me to step aside and let someone else run it, however, due to so many unforeseen changes in the committee and the Society's leadership, I committed to one more year to maintain some continuity.

I'm exhausted. The sailing really took it out of me. It was great to go and have so much fun and see so many friends, but my strength is not what I had hoped it would be, so today's a major rest day for me. Then its time to dive into Christmas decorating and wrapping and playing with Hope, who's now 10 months and fascinated by all the lights.

Happy Holidays to you all. I'll write again soon.

Love,

Travis

PS - I do need to correct one thing from a previous post. Jeff Abbott has been nominated for three Edgar Allen Poe awards, but has yet to win one. He has however won the Agatha Christie, which is the best first mystery novel award. His latest is Collision and his next will be Trust Me out sometime this summer.

A wonderful gift.....

Last May, on the day I was due to get my PET scan results back(which is when I would definatively know if the cancer was back and I needed chemotherapy), a dear friend of mine, Jeff Abbott came to Chicago. Jeff's an accomplished mystery/thriller writer whom I have known for 12 or 15 years. He's written several National and International best sellers and has won the Edgar Allen Poe Award for mystery writing.

Since I moved to Chicago in 2000, I hadn't seen Jeff and we wrote/spoke infrequently. Then last spring, I got a note from him that he was going to be in Chicago scouting neighborhoods for his next novel and could we get together. I said that would be terrific and we arranged to go see the city on that day in May. We saddled Hope up in the truck with us, and toured all over Chicago. It was terrific to get to catch up with him and to see him at work in his craft.

Having never been around a writer, I had no idea how they worked or what went into writing a book. It was really cool to hear about how he could make the neighborhoods work in the book, when in reality they might be miles apart. It was also really interesting to hear what he thought of his characters and who he liked and disliked, it was almost as if they were real people. We had a terrific day.

After I left, I found out that the cancer had returned and I would be in chemotherapy and stem cell transplant land. I told him, and we have stayed in touch ever since, he's been a terrific support and, as always, has a good line to make me laugh. He's also been keeping track of my progress by reading the blog, and sharing it with his readers on his blog, www.jeffabbott.com/blog

He called me this morning to tell me he has dedicated his next book to me. Trust Me is due out in the US in July, and in a quirk of the publishing world that I cannot explain, in airports in Great Britain in February. Who knew....

Anyway, I am honored and priviledged to have Jeff as a friend and grateful for his generosity in dedicating the book to me. Thank you Jeff.

More later, gotta run. Life now feels like there's just not enough time in it.

Love to you all, Happy Holidays,

Travis

Happy Holidays

Having been through the trial of my life this past year, I cry at the thought of how much I have to be thankful for this year. Truly, it has been an incredible year. From the birth of my daughter, through my chemotherapy and my transplant, to the love and support of my family and friends, I feel like I have more to be thankful now than ever before. I am humbled at the beauty of life, it is AWESOME.

I have been remiss in not writing sooner, and I have received many notes and messages about not posting which I have all heard, thank you. All I can say is I'm sorry for not posting sooner. Having spent quite a bit of time pondering why I wouldn't post, I have come to the conclusion that a big piece of not posting was simply to create space between myself and the treatment. I needed some room to grow and heal. I'm doing much better now, and will work to post more regularly again. I feel posting is incredibly healthy and supportive for me, I just needed a little break.

For my update, I am doing amazingly well. I saw my oncologist last week and he was amazed at how strong I was and how good I looked. I have regained 10 lbs and my hair has been growing back steadily. My blood counts were still excellent, although I was slightly anemic(sp?), so he told me to eat a little more red meat. I have managed to catch a cold that has lasted almost a month now, but he said its really a series of colds as my immune system re-learns its resistances, which also explained why my allergies seem to suddenly be much worse than before. The best explanation my oncologist could give was that the destruction wiped out all of my antibodies, and they have to be re-built from scratch, which can take up to a year.

The only side effect that has been troublesome is my memory. I have developed memory issues again. My short term memory doesn't record things properly, and I have alot of trouble recalling events, dates and names. For example, if you asked me what I did on Thanksgiving day, I could tell you we drove to our lakehouse in Northern Wisconsin, but that would be it. I couldn't tell you where we ate lunch or dinner, how long the trip was, how many stops we made, or any other details of the trip. Needless to say, this is an EXTREMELY frustrating side effect, because I feel like a really smart man who woke up one day stupid. And, its incredibly hard because life is now full of land mines. I forget appointments or tasks that need to be done unless they are written down on a list that I am carrying with me. And, there are tons of lists that get set down places and forgotten about, which makes me feel like I'm living perpetually behind in getting anything done.

Hope and Honore are terrific. Hope is my pride and joy. She's a little bundle of joy, and absolutely has Daddy wrapped around her little finger. The worst part is, she's now old enough to know it and take advantage of it. She's standing on her own, and taking a few steps when holding on. She's really close to walking, but we're in no hurry for her to get there. Also, she's making lots of different noises, and lately has taken to shrieking, I think just to see how loud she can make a noise, although Honore says its because her deaf father speaks so loud all the time.

Honi's finally starting to recover from my ordeal. Having to keep running her dental practice, raise Hope, deal with family and friends, and worry about me, was about as much as anyone can got through. I am amazed by her strength and poise in getting through this crucible, so to me she has a lot of lattitude in coming back to normal. Stress wreaks havoc on the strongest of souls.

I want to extend a special thanks to everyone who has helped and supported us through this, in your cards and emails, letters, dinners, and phone calls to check in, you have all been AMAZING. The love and support we have felt has really kept us going. Coming home from the hospital was only the beginning, and the support we got after getting home has been incredible. So thank you all for everything you have done. We love you very much.

I hope everyone has a very Happy Holiday season. Merry Christmas to you all.

Love,

Travis

Update 10/09/08

I'm sorry I don't write as much now, I'm going to start writing a bit more. It was nice to have a little break from blogging, but I miss the chance to have a conversation with myself about everything that's been happening. Someone asked me today if writing the blog during my treatment was cathartic for me. I would have to say in a way, it certainly was.

Blogging gave me an outlet to express many of my thoughts, concerns and emotions as much to myself as anyone who reads it. In a strange kind of way, it provides me the opportunity to step back and think about what's going on, and that provides me with the opportunity to decide how I'm going to react to it rather than just reacting to something. I think this is a major reason why I handled the stress and fear so well, only I didn't realize it until now. By being able to step back and look at what was going on, I also provided myself the opportunity to contemplate events and choose how I dealt with them. In exploring this more this afternoon, after my conversation, I realized that's why I am so upbeat all the time. I choose to be upbeat.

In the hospital, the nurses often commented how I always seemed happy or willing to tell a funny joke or story, pretty much no matter how much chemotherapy they gave me. They thought it was amazing how I was able to have such a positive outlook all the time. I just always attributed it to my emotional make-up or how I was raised, never realizing, until today, that maybe its because I found a way to take control of my emotions and choose my responses. I'm not saying I wasn't scared or nervous or terrified or some crazy non-emotional being. Rather, I was able to say to myself, I'm scared, but here's how I'm going to deal with it. I would share my fears with people, but there's no reason to let it overrun my thoughts and emotions, and what better way to lighten things up than with something funny.

Thank you to Chris Lapak for asking me that question. You really got me to thinking about it today, and inspired me to write more here. Thanks, that's a pretty terrific gift.

I saw Dr. Happy Pants again this week. This was for my three week follow up. My blood counts remained normal, which is great news as many patients experience ups and downs in their counts after leaving the hospital and apparantly I am not. He said I'm doing as well at 34 days as most patients do at 100 days. He said I can return to a normal routine, in so far as I'm physically able. I'm still very fatigued and sleep alot. I'm still on my antiviral and antibacterial medications, and will be for another 6 months. He said we don't want me getting sick if its at all avoidable, but not to worry if I do, my immune system is strong enough to handle it. My next appointment with him isn't until January, and I'm supposed to return to my oncologist to begin transitioning back to his care and monitoring for the rest of my life.

I have to run as I don't have alot of time to write tonight, but I'll write more tomorrow. However, there's one more thing I have to say, and that is a giant THANK YOU to everyone for their love and support, especially those who have brought dinner and/or helped take care of Hope. I am humbled by your generosity and support, and cannot thank you enough. I love each of you very much. Y'all have made my recovery much easier, and I will forever be in debted to each of you.

Goodnight,
T

Two weeks out

Man, I can hardly believe only two weeks ago I was just getting out of the hospital. It feels like a lifetime ago, and I think that's a good thing. I'm forgetting alot of what it was like to be in there already. I like that, because when I think about it, I realize just how much it sucked. Not only the treatment, which was brutal, but being confined to such a small area and feeling so poorly all the time.

Everyday now I feel a little stronger, and I do a little bit more. I saw my doctor last week and he said my blood counts were back to normal, so now my recovery is mostly focused on getting over the chemo and their side effects. I can go out in public, travel, and do pretty much whatever I want, although I still have to be cognizant of how tired I am and should avoid sick people as much as possible. Even though my counts are normal, my new immune system is still relatively immature, so testing by getting sick now is something I want to avoid.

I'm still exhausted and get tired out extremely easily. I also still have no hair, although it feels like my scalp has sprouted a little peach fuzz. My nausea has pretty much passed, although from time to time I get little bouts of it, but they usually go away with a dose of Zofran.

Food still doesn't taste very good. Everything tastes very little like is should, although I have found that spicier or stronger flavored foods, like Mexican food or zesty Italian dishes, do taste quite a bit better. Bland foods or basic foods don't taste like much of anything. They say this will last several months, but my tastes will get back to normal eventually.

Hope is a wonderful distraction for me. She goes on about her life as if nothing happened. She's more interested in crawling over to the couch or coffee table and pulling herself up to standing. Then she likes to laugh about it. And jump. She loves to jump. Once she's standing up, she like bouncing up and down. She's just about worn her bouncy seat out because she jumps so much. Needless to say, chasing my little darling around for much more than an hour exhausts me, although it is ALOT of fun.

Honore is doing very well. She's getting used to the idea of me being home again and starting to do more around the house to help out. Although the hairless thing still kinda creeps her out. Its nice to be home again and getting to spend time with Honore and Hope.

Mom and Dad returned to Tucson last weekend. They were wonderful to have here, but I know they were pretty damn excited to be home again. Being here for three months was difficult, although I know there's nowhere else they wanted to be. I'm glad I'm doing well enough for them to return home, it kinda signals life slowly getting back to normal. And I like that.

I see the doctor again next week, although I expect it will be much of the same. You're doing great, keep up the good work. I like those kind of doctor's appointments.

What a long, strange trip this has been. I've been watching the leaves begin to turn and can't get over that summer's over. I feel like I didn't even get a summer. However, I'm glad things went so well and that we are coming to the end of this road. I look forward to getting my life back.

TTFN, T

T+19 Update

I can hardly believe I was let out of Northwestern only a week ago this morning. It feels like a lifetime ago. Some of that's because I still don't have the strength or energy to get out and do alot, so the days go by pretty slowly. And some of it is the mind doesn't remember pain, and I'm forgetting alot of what happened.

They warned me about coming home and what a huge adjustment it would be because of how much they disrupted my sleep schedule and how worn out the drugs make my body. They were not kidding, its been a HUGE adjustment. But a very positive one. I love getting to sleep eight hours without them waking me up to take my vital signs or weigh me or give me some medication. It took 3 or 4 nights for me to quit waking up every four hours out of habit, but by this last weekend sleep was once again my friend.

The other thing I have found difficult to deal with is that I made it through the treatment with so few complications. That was terrific, it was amazing, and I am grateful for it, but it doesn't make the process any easier. What happens is, my journey gets minimized because I went through it easily. There was nothing easy about it, and I wouldn't want my worst enemy to have to go through that. Its disruptive, destructive, painful, unpleasant, awful, and I don't know what other words to describe it with. Alot of times, in telling people what happened and how well I did, what gets lost is how difficult the treatment was, and that bothers me. I don't ever want to do that again, so the cancer better stay gone.

Getting to be close to Hope is the best part of being home. I'm still not strong enough to be a primary caregiver for her, but I can spend an hour here and there with her. She's a hoot. She's crawling, and as soon as she figured out how to crawl, she figured out how to pull herself up to a standing position, which she likes better. So now, when you put her on the floor, her primary objective is to locate an object which will allow her to pull herself up to standing. This can be anything from the dog to the couch to the coffee table, you name it. Needless to say, we now have to be in catching distance from her at all times because she's really not strong enough to be walking so what ends up happening is alot of falling down.

My little pinto has a mind of her own too. She loves being the center of attention, and will do things to get everyone's attention. Then, when she's playing with her toys, she wants whatever toy you have in your hands. Period. She sees me holding a glass of water, she wants it. She sees me holding Patch the stuffed dog, she wants to play with it. As soon as she gets whatever you have though, she's on to the next toy to play with, so life is this constant stream of finding things for her to play with which is kind of interesting.

Friends have been asking how I feel. I feel pretty good all things considered. My body physically still feels like someone dropped a building on me, only everyday the size of the building gets a little smaller. The best time of day for me, energy wise is early in the morning. I do well until about lunch time, then I need a couple hour nap. Then I am up in the evening, but usually a little foggy.

Mind has been pleasantly clear on these drugs. CHOP-Rituxan four years ago really screwed up my short term memory. With these drugs, I have had some memory issues, but thankfully not the near Alzheimer's situation I went through before.

Since I'm home and doing better, I have cut back on posting. There's not as much to post about, so I'll just put up weekly updates on how I'm doing. I go to see the doctor tomorrow and hopefully he'll let me drive again and take me off the bleeding restrictions. Those restrictions really limit what I can do around the house, because I'm not allowed to do anything that might cause me to bleed or bruise, ie no cutting/chopping/making dinner, no lifting or moving objects, no sitting in the front seat of a car(airbags cause severe bruising).

I'll let y'all know how the doctor's went tomorrow. Peace, and I'm out. T

T+14 Home Again

WOW, what a crazy time its been since my last post. Monday morning when Dr. Happy Pants decided to let me go, I didn't realize there would be so many things that needed to happen to spring me from the joint. I thought just pack and go, but no. They had to do a bunch of bloodwork, give me IV Platelets because my count was only 26 and they wanted it at least 50 to get my vascular catheter removed, and they needed to give me IV Magnesium and Potassium(which take about 4 hours apiece to infuse).

Ok, having the central line removed was the single most painful part of the entire chemotherapy treatment this summer. Basically, they just numbed my skin for the 3 inches that the catheter ran under it, and pulled it out. Literally, the doc just pulled the tube out. He would pull about a millimeter, then cut the scar tissue back, and repeat until it came completely out. It took about 45 minutes to get the whole thing out, and man was I not expecting how much it would hurt.

I loved having the port in during the treatment phase, because I didn't have to get any more sticks in my arms. Also, the port took huge volumes of fluid through it, so things like transfusions went quicker. But towards the end, the catheter was getting a bit uncomfortable from all the scar tissue, so I don't miss it anymore. I also don't miss the dongles hanging out of my chest, they were kinda creepy. I never really got used to them. I would look at them and think, those go straight to my jugular, and I would weird out.

Anyway, so by about 5:30 pm, they finally discharged me to go home. I was kinda sad to say goodbye to all the wonderful nurses and PCTs who helped me while I was in there, because they were so kind in caring for me and they all said they hoped they never saw me again, which I agreed with I'd rather not go back either.

Leaving the airlock to go out to the lobby and down to the truck was very emotional for me. It wasn't that I was jumping up and down with excitement, I've kind of never been that way, rather it was more a sense of accomplishment and relief. Accomplishment in that I had done something truly amazing, and difficult, and come through it solidly. I am proud of myself for that. Relief in that the hardest part was over and I wasn't going to be locked up in that little ward any more.

From Saturday when they first said I may go home Monday, until I left, the isolation ward suddenly got really, really small. I could feel the excitement of leaving building inside and it began showing me how uncomfortable I was and how confining the ward was.

I read a book last year called Deep Survival, by Laurence Gonzales, who had some suggestions I had been following. In his lifetime, he has been studying people who survive critial situations, like being lost at sea, or mountain climbing and getting caught in a blizzard. One of the conclusions he came to in dealing with long term survival situations was that the likelyhood of surviving increased with the victim's ability to come to terms with their situation, adapt to it, and begin living in the altered reality.

For example, when a solo sailor's boat sank in the middle of the Pacific and he lived over 300 days in his liferaft, he very quickly was able to create a new living standard for being in the liferaft. He didn't think about being rescued, or what life would be like when he was, instead he focused on learning how to fish and catch rainwater, watch weather patterns, navigate by the stars, to the point that when he finally drifted into some Mexican fishermen, and they rescued him, he told them to finish fishing that day before they took him in. He was so comfortable in the environment of being lost at sea, that he was able to deal with being out of touch long term.

I felt that going into isolation would be similar. I knew it would be extremely confining. And I also knew that if I focused on getting out, and what that would be like, I would be setting an expectation for myself that may take a very long time to come to fruition, and could lead to depression if my stay became extended. So, from the get go, I didn't think, in detail, about leaving.

Getting out was my goal, but my focus was on doing everything I was told so that I could recover as quickly as possible. It wasn't until they said I might leave on Monday that leaving came to my mind in detail. And suddenly, being in the ward was much more difficult. It was as if a switch were turned on in my head and it was all I could think about. Crazy as it sounds, thinking about leaving only made the discomforts of being there worse. Suddenly, I hated the uncomfortable bed, I hated peeing in the plastic jar all the time, I couldn't stand the food(which was terrible even according to my visitors). Once my mind realized I was going to survive and get out, it switched from assimilating and coping with being in there, to just wanting to get out ASAP.

Being home has been great, and it has been challenging. Great because I get to see and play with Hope, I have the freedom to move around and eat/drink when I want to(IE no longer on a strict regimine for everything), and I get to sleep without being woken up every 4 hours. Challenging because my body's so exhausted. I had no concept of how far they took my system down until I came home. I can barely go more than about 15 or 20 minutes out of bed without feeling exhausted. Its like all I want to do is sleep, which is a good thing actually.

My home health nurse came by yesterday and couldn't believe that I had just been released and was at only T+13. She said, "You look amazing. I can't believe you're up and moving around, much less answering the door and offering me coffee. In 40 years of nursing, I bet I've only seen 2 people who look as good as you do at this point. You're really blessed."

Then she took my blood pressure and was shocked. "You have the blood pressure of a teenager. I don't know many 40 year olds who are 110/72, but your heartrate is 101, which means your body is still working very hard, so you have to be careful not to overdo things. Don't get all excited and wipe yourself out."

She's right. My doctor said it will take 6-8 months for the BEAM chemotherapy to completely leach out of my bones and be removed from my body. So even though I'm excited and happy to be home, I still have a long way to go.

But there is definately something wonderful about having come through my Stem Cell Transplant. I'm a very blessed man indeed.

T+12 FREEDOM!!!

My counts stayed up, I didn't run a fever over 100.5F, and I am GOING HOME TODAY!!! I'm so happy I'm not quite sure what to do with myself. Things have been kinda crazy busy this morning because the doctor didn't come by for rounds until 10:00, which is pretty late. I won't actually get out of here until late this afternoon, but in addition to getting to go home, they are taking the central line out this morning!!! YAYAY!!! I have liked having it in, because it makes the IVs and stuff easy, but now that I should only need a few more blood draws, I'm ready to get rid of it. The two dongles that hang off it are pretty annoying after awhile, especially during sleep. I don't know how may times I've rolled over in my sleep and the dongle has poked me waking me up.

Anyway, very exciting news and seeing as I haven't even started packing, I have to cut today's note short. I'll keep posting during my follow up. TTFN, T

T+11

Man o' man, my body is AMAZING. My WBC went from 2.1 yesterday to 3.7 today, although they told me my counts would probably go down a little. Also, my Absolute Neutrophils went from 1.8 yesterday to 3.1 today, which shocked my nurse. Mei couldn't believe my neutrophils would go from Too Low To Count to 3.1 in two days, she had never seen movement like that only 11 days after transplant before.

Dr. Happy Pants just came by, he's great now that I'm feeling better. He says I'm probably going home tomorrow or Tuesday. They are stopping all my IV medications today and taking me off the drip, so I'm no longer married to my dancing partner. YAYAYAYAYAY!!!!

I have this pole on wheels which stands about 6' 4" tall. About waist high there's a metal ring, whic serves as a handle and a little try for holding my stuff, just above this, attached to the pole is a pair of electronic IV pumps which connect up to the IV bags which hang from four hooks at the top. The first thing they did when I came into the hospital was hook me up to this, and I have been attached to it 24/7 since. Sleep, shower, walk, exercise bike ride, it didn't matter, I am hooked up to this thing. AND IT STOPS TODAY!!!!

My brother thinks I should get a blond wig, a pair of coconuts and a grass skirt and call her My Girl Friday. GOD I can't wait to get rid of this thing, that's going to make me so happy.

Dr. Happy Pants is thrilled I've done so well and said if I go home tomorrow it will be one of the earliest he's ever released a transplant patient, 12 days from transplant. He's very impressed with both my positive mental attitude and my body's response to the treatment. "I wish more patient's were like you, its makes my job much easier."

Having seen 9 patients transferred to ICU, and only 1 return, and knowing that most of them have made the final turn for home, I feel so blessed. I'm extremely lucky to have a strong body, and sound mind, a tremendous support group and an undaunting will. I will forever be grateful for all of those things, and so much more.

I'm a little scared to go home in a way though, because I fear those around me will assume that because I'm out of the hospital I'm back to normal. According to my doctor, I still have a long way to go to get out of the woods, and there will be every bit as much struggle at home as here. For several weeks, I will remain mostly bed ridden, forbidden from crowds, avoiding sick people, and taking lots of medications to prevent any followup infection which would land me back here.

Who the hell am I kidding, I can't wait to get the fuck outta here. Room 1596 has been great, the staff has been great, the hospital is very nice, but I'm ready to GO!!!!

Speaking of the future, I'm seriously thinking about becoming either a motivational speaker, or a life coach(or maybe some combination of both). I think the trials I've been through in battling cancer give me a perspective on life that's pretty healthy. I wonder how to find out more about those opportunities.

Today's Dream: A hammock strung between two palm trees, dangling invitingly close to a sugar sand beach, with a view of the gently breaking azure blue sea and a flag that brings fruity drinks from the bar.

T+10 Followup

Dr. Happy Pants stopped by my room first this morning on rounds. He couldn't believe how much my numbers had bounced back. He was very happy for me. He said if I don't run any more fevers this weekend, and the numbers hold up, he will let me go home Monday! WOHOOO!!!

I will still be very weak and sick and have to be very careful, but I won't be tied up in this little room anymore. I like the concept of that. Dad, who spent the night with me last night, was super excited as well. We couldn't believe it, I might get to go home two weeks ahead of schedule! Man, when my body sets itself t something, it gets it done. Course, I've always kinda been that way, so I shouldn't be surprised, but to see my numbers jump like they did today was amazing. Dr. Mehta said he was very impressed, he had not had anyone bounce up like that 10 days out from BEAM chemotherapy.

He also commented that he wished all his patients had bones like mine.

On my mile walk this morning, all the nurses and PCTs on the floor were very excited and happy. I think news like this coming after sending 9 patients to ICU in two days, was a welccome relief. There's certainly a sense in talking to them that they like to a cheer a little when one goes right. One nurse said I inspire them to keep going. Funny, I'm inspirational and I've done nothing more than my best to get outta here as soon as I can.

Maybe I'll have to figure out something nice to do for them when I'm out. Please post any ideas, because these men and women have been angels to me. And I owe them so much, I need to do something.

alot of emotion running through me today, there's definately a lump in my throat and the feeling that a major corner in my life is being turned. I feel like crying. Can't believe it. I did it.

T+10 Fun with People who think they know everything

Yesterday, when the doctors did rounds, they commented that my WBC was up to 0.4 and although my neutrophils were still TLTC, they took it as a sign I might be recovering. I told Dr. Mehta, you should be careful. This tough Texan's gonna shock you, tomorrow those numbers will be back and you'll have some explaining to do.

So, fast forward to 6:30 this morning when my nurse comes in to wake me for my medications and says, "I can't believe it Travis, you're no longer neutropenic." Really? What are my counts?

She then goes on, "your counts went up so much I at first thought maybe I got the wrong labels on you samples this morning, but I just know I got it right. i just can't believe your numbers. Your WBC is 2.1, up from 0.4, and your Neutrophils are 1.6, up from TLTC(keep in mind I only need Neutrophils above 1.5 for 3 days to get let outta here). I just can't believe it. Neutrophils take a week to 10 days to move 1 point, yours just moved 1.6 in one night!"

I told y'all yesterday when I came back I was coming like a house of fire, this is one tough Texan. She laughed and said the doctors won't believe it, so don't be surprised if we don't have to take more blood this morning. "Also, they're gonna tell you its just a spike and your counts will come back down."

Which they won't, my body hates doing things twice. BOOOOOOOOOOOOOOOOOOOYYYYYYYYYYYYYYYYYYYYAAAAAAAAAAAAHHHHHHH!!!!!
AND HAKUNA MATATA BITCHES!!!!!!!!!

WE MADE IT!!!!!!! I feel like dancing!!!!!!!! I'm no longer neutropenic, which means no more vitals every 4 hours, and a whole host of other things if they do what they've told me they will, but it kinda depends. I suspect they aren't going to believe me again.

I'll write more after Dr. Happy Pants comes around, I can't wait to hear what he has to say. Love to all, T

T+9 First Signs

Great news, my WBC is 0.4 today. So in the past 3 days it went from 0.1 to 0.2 to 0.4, meaning that some stem cells have engrafted and are partying it up! My doctors were very encouraged as this would be 3 days earlier than expected. However, they were quick to point out that even though I will at times feel a little better, there will still be major hiccups in the road. I will still spike fevers, get bloody noses, and have to be careful of all the stuff we are watching out for, but the doctors all agree these are signs the engrafting is taking place.

The counts will go up and down with some variability, but generally from here they should go pretty much up to a near normal level. Then, we can start evaluating my body's reaction to the treatment and chemotherapy. My neutrophils are still TLTC, but those go up last usually.

My lead Transplant doctor said this morning, "So far, really, your case has been what we look for in a Stem Cell Transplant case. Straight through the uprights." To which I had to add, "you mean like when Robbie Gold converts on a Devon Hester punt return." All three of the doctors on the rotation this morning laughed at that one, although the head doctor commented that he thought the Bears may find some offense this year. To which I couldn't help myself, I said, "Even a blind squirrel finds an acorn every once in a while."

Spirits were much better on rounds today, especially mine. Its dreary and overcast outside, and I could careless. It feels good to think that I may be finally turning the corner on this bitch. When I'm not running a fever, I do feel a bit better. And when I'm running a fever, I don't feel quite as bad, although its still pretty bad.

Today, for the first time, I realize I'm truly gonna beat this thing. I can begin to see the light at the end of the tunnel, and man am I ready to run into some daylight. I haven't decided what I'm going to do with myself after recovery, but I'm gonna do something great. This is too high a price to pay to just sit around and do nothing with my life.

Maybe I'll be quiet here a bit and ponder that...Hope y'all have a great day! Thanks for all the comments, posts and emails. I cannot begin to tell you all how much the support means to me. I may not respond to all of them, but I read each carefully and take them to heart. Y'all are ALOT of the wind under my wings. Thank you.

ADDENDUM
There was some sobering news on the floor we learned last night. Of the 14 patients currently undergoing STC, 6 have been removed to ICU in the past 48 hours. According to the nurses, that's not a good thing as it means the transplant is failing and there is nothing the doctors can do to help them. Sadly, one was a 25 year old kid I just met the other day. He was getting a transplant in treatment of his Leukemia. His room is empty today, and that hurts. The other one that shocked me was the 41 year old who started the same day I did. Our treatment were literally at the same time. Nurses would be in changing my IV, and he would beep them to change his. He was a bright, funny guy getting an autologus transplant for relapsed NHL. He went to ICU this morning. And his outlook is pretty grim. His room was empty on my walk this morning too.

Its hard not to cry about those. I'm blessed to be so strong and doing so well, and I know it. Because I see firsthand people who aren't so lucky. They start at the same point as I, but don't necessarily end up in the same outcome. I don't understand why that happens, I just feel honored and privilidged to walk the path I walk. I say a prayer for both Jessie and Chris.

T+8 One LONG SCARY Night

Last night, I spiked a fever about 8:00, right on schedule, and started a bloody nose shortly there after. Then, I began to get a terrible headache. On a scale of 1 to 10, it started as a 4-5, so I told the nurses and we watched carefully. Because of the spike in fever, once again we got blood cultures, a urine sample and since we haven't had a chest x-ray since Saturday night, we ordered one of those.

By 11:30, all the tests had been given and they gave me two Tylenol for my headache. They can't give me anti-inflammatory meds because they will hurt the stem cells. My bloody nose had come and gone several times, but we had a strategy for dealing with it, called slap an ice bag across my nose soon as it starts and freeze everything. However, the Tylenol worked like a snowball being tossed into a furnace, and about 11:30 the pain really began to increase. It rose to 8 on my pain scale, and had my eyes watering. It felt like someone had landed an axe in the bad of my head.

The nurses were very concerned because I had been having so many bloody noses, that maybe one of my sneezes had caused bleeding somewhere else. They pulled a platelet level immediately, and an hour later it came back at 13. Dangerously low, and requiring a platelet transfusion is active bleeding is present. However, my fever had climbed to 101.4, preventing the transfusion of platelets as the fever would destroy them upon their entering my bloodstream.

We had to get my fever broken, and with no response to the tylenol, the nurses and doctor were conferring about getting a head CT to insure I wasn't hemmorraging into my brain. They tried Tylenol -3, with codeine, to see if it would take the edge off, and hopefully break my fever also. To no avail.

The doctor then did a long series of neurological tests, which I passed but she wasn't happy with, so at 2:30, she ordered a head CT. She explained there were three things which could be going on that would be extremely dangerous, and one thing that could be going on that was no big deal. I could be having a brain hemmorage, a subdural hematoma(unlikely as I hadn't banged by head on anything, but possible), or internal bleeding against my brain stem. The risk of any one of those outcomes was enough to justify a head CT, so she was ordering one. The final option was that I simply was having an incredibly bad headache. The Tylenol-3 got the pain back down to a 5, but it was still pretty killer.

So, at 2:30, I sucked it up and called Honi to let her know what was going on. I couldn't face if there was an issue, having one of the nurses call her at 4 am to tell her what was going on. I was scared shitless, and hurt like hell. Honi was great. She felt it was the introduction of neupogen, which had started again.

In the middle of the night, the only CT scanner working in the network of buildings that make up NMH is in Feinberg Pavilion, by the emergency room. As a critial care patient though, a stat order on anything gets me priviledge. Transportation arrived about 3:00 for the 3 block trek over to Feinberg. Fortunately, the network is all connected underground, so it only took about 20 minutes to get over to the CT place.

By 4:30 I was back in bed, with my head exploding, but the relief of knowing that it wasn't any of the bad three items. The CT scans were negative. So then we had to begin trying to find a drug to knock the headache down. Finally, about 6 this morning, Fioricet, a migraine drug, knocked the stuffing out of me and laid my headache to rest.

And that concluded one of the longest, scariest nights of my life. I have to say, it went pretty well. I never really panicked. The staff here was terrific at laying out all the possibilities and all the outcomes for each, and maintaining an air of erring on the side of safety. Calling Honore turned out to be the right thing to do, as we talked this morning and she agreed she would have been pissed to get a call from the nurse saying I was going under the knife to relieve a brain hemmorrage without somekind of heads up.

Because of my depleted platelet situation, which will continue for another 5-7 days, we will have to be particularly careful about monitoring my nosebleeds and any sneezing that might cause internal bleeding. Also, I have to be extra careful not to fall, bruise my body in any way or cut myself with any kind of sharp object(not that I have any sharp objects per se, but its more being aware when I'm up walking around not to bang into anything).

Scary stuff. I don't remember reading any of the be prepared material talking about brain hemmorrages or internal bleeding or strokes. None of which I have any interest in. Fortunately, I'm in good, quality, professional care and we know what to look for. Meanwhile, I'm now exhausted and heading for bed. I'll update more tomorrow.

My WBC today was 0.2, up 0.1 from yesterday and my Absolute Neutrophils were TLTC(too low too count). These are the numbers we are waiting to go up, they are my immune system.

T+7 Grinding it out

Still hanging in there, grinding it out waiting for my stem cells to decide they want to try and win this drag race. UGH, lazy bums. I hope I didn't get the Cubs of stem cells. Another long night last night of bloody noses for 2.5 hours, blood transfusions, platelet transfusions, running a fever every time I turn around. Pretty much all the same shit, but a different evening.

Oh, but my optimist of a doctor thinks I'm doing great, I look great, sound great, I make jokes. Inside I'm laughing because I know he'll never have to go through this, so he can't appreciate the energy it takes to be cordial to him in the morning.

Managed to make it till 10:30 this morning before my fever kicked in again. They still don't know what infection is causing the fevers, so they are adding another IV antibiotic, Vancomycin(sp?), in addition to the ceflefan(Sp?) I already get every 5 hours.

Dr. Happy Pants still thinks Sunday will be my big turnaround day. They all agree, once my system comes back on line, all this feeling like shit goes by the wayside pretty quick. I still won't feel as well, but I won't be refusing food or drink.

This is far harder than I imagined in writing my speech for Leukemia Cup Regatta. When I gave that speech, I would have thought, that sort of outlines the worst case scenarios, but that won't happen to me. Guess what, all those scenarios happen to just about everyone who goes through this, and they stack up, so they feel worse than one might expect.

Tomorrow I will have been in here two weeks. I sorta feel like that should count for something, but its really nothing more than a measure of time I've been in here. We're still planning on me being here a month, and then transferring home, where I can't imagine I'll be terribly strong. I'm weak as a kitten now, and losing weight pretty good. I wouldn't reccommend chemotherapy as a drastic weight loss solution, but the most I've weighed here is 228.9 and now I weigh 211.2. Weight Watchers would be pissed if I reported a weight loss of 17 lbs. in 10 days. HAHAHAHA.

I'm laughing at myself there...so on that note, I'll sign off for today. Love and hugs to all. Thanks for all your support, and loving kindness. I know you're out there, and it means alot to me.

Travis

T+6

No writing simply means I'm not doing well enough to share. I am more than happy to share my progress, but I've been feeling so worn out all I do is lay in bed and sleep. I have to force myself to walk a mile everyday, which they want to strengthen my body and keep from getting bedsores.

I haven't eaten a full meal of anything in three days. The nausea medications keep me from vomiting, but putting something on my stomach is simply too much. They have me drinking Ensure or Boost twice a day, and give me IV supplements to keep me going. I feel like canned dogfood, but the good news is it should only last through Sunday. By Sunday or Monday, I should be feeling better.

I have basically had all the side effects they warned us about, and they are just as bad as I imagined they would be. I've been running a temp over 100.5 for 2.5 days now, which drives my heart rate up to about 120, even laying in bed. So I feel exhausted.

My Neutrophils are now uncountable on the daily blood test, and my white blood cells are below 0.1. Now, we're just waiting for the engrafting and creating new WBC so I can feel better about things. My RBC and Platelets are so low I am getting transfusions every day. Two units of A-, and a unit of platelets.

Last night, I sneezed and my nose started bleeding. Fortunately my nurse came in the room just then for something else and saw blood flowing everywhere. We quickly got a sample to the lab, and determined I didn't have enough platelets to stop the bleeding, so I got platelets transfused. Now, I'm terrified to blow my nose. My nose bled for a solid hour while we waited for the tests to come back.

Now I get blood tests, urine tests, stool samples, vitals(blood pressure, heart rate, temp), and any other stupid probing or prodding of my body they can dream up, every four hours. Its a veritable party around here.

Fortunately, the nursing and PCT staff here are ANGELS. They are absolutely terrific. They handle everything calmly, efficiently and thoroughly, and manage to keep me on an even keel at the same time. They are all in love with HOPE though and practically beg me to get better so Honi can bring her by to visit. She can't come while I'm running a temp or having any other issues.

Exhaustion wins, I'm taking a nap. If I'm up to it I'll write more tomorrow, otherwise till we meet again. T

Sunday T+4

WOW, did the Malfalon lay me out. I felt so bad Friday and Saturday I couldn't even turn the computer on, much less post. Exhausted, drained, fatigued, like a building dropped on me, these are all descriptions for how bad I felt, but don't really give a true impression.

Yesterday, my WBC finally fell below 1.0 to 0.4, which is neutropenic(meaning no immune system). So they were giving me lots of antibiotics, antivirals and antifungals, to try and keep any infection at bay. Alas, about 10:00 last night, my body finally succumbed and spiked a 101 fever. 100.5 is enough to send them scurrying. They checked my blood, did a urine sample, sent me for a chest x-ray at 1:00 am and started me on IV antibiotics, which are even stronger. They also began running my vital signs every four hours, which makes sleeping a bit interesting. Getting your blood pressure checked while in your sleep in kinda freaky.

They have to treat any fever with so much action because they don't know the cause of the infection/fever. It could just be that I'm neutropenic, but it could be something worse. Because I've no immune system, they have to err on the safe side. By this morning, by temperature had come down to 99.0 and I was no longer sweating like crazy. I can't say I feel any better, because I'm even more exhausted than yesterday, but that's mostly because of the lack of sleep from all the testing.

They are telling me my stem cells should engraft and begin re-creating my immune system in the next 4-5 days, and that when that happens, I will begin feeling alot better. In the meantime, the threat of fevers and more tests will remain high. Although, I'm encouraged because my doctor says I look good and am doing well spirits wise, which is a huge help according to her.

Thank GOD for college football. Man, I love getting to watch so many games. Small consolation for how bad I feel, but its something. Peace out, I'm off to my morning nap. T

T+1

Today is actually a bit of a rest day. The Malfalon should be completeing its effect today and/or tomorrow, leaving me at the lowest point according to my doctors, and I will stay feeling pretty low until my stem cells engraft and produce a new immune system, T+6 or so. I don't feel too bad though. I slept almost 14 hours last night, which I haven't done since I was a teenager, and couldn't have possibly achieved except that they kept giving me ativan to keep me asleep.

My spirits are pretty good this morning. I'm glad there's no more chemotherapy to go through, and I'm glad the transfer's complete. I feel a HUGE sense of relief at how well the first part went. I've seen a number of other transplant cases on my floor and many of them don't look like they are doing nearly as well. It was hard enough on me, I can't imagine what it would be like to really struggle through the procedure. Thank goodness for great nurses and good drugs. Better living through chemistry certainly applies.

I do still find myself wondering why me sometimes. I didn't pick this intentionally, nor would I given the chance. But that's a tough place to go, why do things happen to people? Is there a deeper explanation or is it simple randomness in the universe? Personally, I like to believe there's a deeper explanation, but having to go through the ordeal of NHL, I would like to have a better understanding of the explanation if it were possible. Maybe someday I'll comprehend it better.

Oh well, something for me to ponder and help pass the day. Going to eat a little breakfast, then I'll go for a bike ride and a shower. How's that for a busy day? Doesn't sound like much till I remember that the guy riding the bike has no immune system........ttfn

Happy Birthday!!!

As they call tranplant day around here, its funny in all the paperwork they talk about it being anti-climatic because the drugs effects last for several more days, but the staff around here is all excited. They keep saying how exciting it is and how I'm doing great and things are going so well. A strange juxtaposition.

So, at 1:00 pm today, following a brief blessing of my stem cells, they will be ceremoniously plunged back into my blood stream with strict orders to find their way to my bone marrow as quickly as possible, graft to their new home and begin making blood cells. Kinda cool if you ask me.

I feel surprisingly well. I slept great last night, except for having to be woken up at 5:30 for my vital signs. Unfortunately, my heartrate was highly elevated, so they then had to run an EKG, which we're still awaiting the comparasin results on. It should be ok, most likely a case of getting out of be too quickly, according to the doctor.

The malfolan yesterday was basically a sleep fest for me. They had me so pumped up on ativan, zofram, prednisone and benadryl I ended up sleeping through the whole thing. Honore and Mom took turns shoving ice down my throat to keep the mouth sores under control. But I don't really remember that part too much.

Breakfast arrived, and I'm hungry to ttfn. T

T-1

Yesterday was THE BEST!!! My doctors let Honore bring Hope to visit me!!! It was like a giant ray of sunshine on the darkest day. She got to come for like 2 hours in the morning, and was awesome!!! Since I left her last week, she's learned to sit all the way up on her own, she's scooting forward(very close to crawling), and she's got a tooth!!! What a BIG GIRL!!! I was so happy to see them. Honore brought me a couple of fun presents and she went to TGIFriday's for lunch, I ate potato skins and a cheeseburger. (the food here is less than optimal) The only good thing about being in here is nobody gives a damn what I eat, as long as I have an appetite. Its awesome.

Huge day today, last of the chemotherapeutic agents goes on board! It's the biggest, worst one, but after this, there will be no adding stuff to make me sicker or kill more of me. My nurse describe the first six days of chemotherapy perfectly, its like the start of a roller coaster. You slowly clank upwards, higher and higher, loading your body with more and more poison, then at the very tippy top, they give you a booster straight up and then you turn over the top and come screaming down.

The down happens very quickly, 1-2 days, and you stay down until your stem cells graft and begin producing WBC/RBC/Platelets/etc., which usually occurs in 6-10 days. To give you an idea of how low, a normal person my size, 6' 2" 215#, would have a WBC count between 4.5 and 9.5. At the low point in the next couple of days, my WBC count will be between 0.1 and 0.01. My platelets, normally around 200 will be down to 10, below 10 they transfuse platelets. And RBC, normally between 9.5 and 12.5, will fall to around 8.0, below that they will be transfused also as severe deoxygenation sets in, robbing my vital organs of O2.

There's no acute pain associated with any of this, its really more exhaustion and fatigue as my body starves for O2. Doctors monitor everything very closely and will give me fluids and nutrition intraveinously as needed. I also get antibacterial, antifungal and antiviral medications by IV beginning today. Today's drug, Melfalon(sp?), must be some serious stuff. They are pre-medicating me with a large IV bag of Zofram(anti-nausea), IV hydrocortisone, IV benadryl, and IV ativan. Then, the Melfalon only takes 30 minutes to infuse. Basically, its good night Betty for me see y'all tomorrow.

But here's the good news, there's no more shit going in. I can see the bottom, I know it sucks, but I know I'm strong enough to pull through it. So let's get it on!

Peace out and keep your powder dry! T

T-2 - THANK GOD!!!

Today's the last day of 4 hours of chemo in the morning, and 4 hours in the evening with so many bags of fluid stuck inbetween that I gain 6-8 pounds which I then have to pee off at night. I'm so sick of my joints feeling so swollen and my head feeling like its sloshing around on top of my body. And I don't even get a decent buzz out of the deal.

Seriously though, I'm very excited this morning because I am coming to the end of the chemotherapy treatment. Only one more round tonight and then a different round tomorrow and I'm done. Stem cells go back in on Wednesday. So far, my WBC have held up remarkably well, so although I feel bad, its not as bad as it could be. Overall, I generally just feel really, really weak and tired. There's no acute pain, but the dull ache is plenty for me.

Allissa, my nurse, says that by having my counts stay up for so long, the really bottom days could be shorter because my new stem cells will be making replacements for the dying WBC, RBC and platlets, so once again my tough assed bone marrow comes to the rescue. WHEW! I've walked around the isolation ward several times and seen some of the patients who aren't so lucky, and its pretty disturbing.

Thank God also that the transplant coordinator was so great about having me bring books, games, my computer, music, etc. Boredom is a KILLER in here. I don't feel like doing much, but my mind wanders all over the place. Hope and Honore gave me a digital picture frame for Father's Day which has been a blessing because I get to see so many pictures of friends and family all the time, that helps. And all the posters that y'all signed at the Leukemia cup weekend decorate my walls and really help to make me feel better when I'm down. And finally, I love having a little bag of snacks stowed in my closet so that when the chemo tastes terrible, which is most of the time, I'm not forced to turn to hospital food for salvation. My little boxes of cereal or popcorn are awesome.

Wish I had some pearl of wisdom or humor this morning, but I really don't. I'm tired because I have to get up so much during the night to pee I never really sleep more than 3 hours. Time to run, last bag of morning chemo. :) Yippee.....

T-3

Another day, another two rounds of chemo at 7 am and 7 pm. They take between 2-3 hours to complete and basically just drain me further. I'm pretty exhausted, but that's mainly the extent of the side effects at this point. We seem to have my overfluidizing under control. I've been peeing a TON. For example, last night at 10:00 pm I weighed 224.9 lbs. This morning at 6:30 am I was down to 219.1 lbs. All fluid.

During the day, the treatments build up tons of fluids, driving my blood pressure way up. then at night, I get the chance to pee and sleep it off. hehehe.

I asked the nurse how caustic the chemotherapy agents were, because they completely wrap themselves up all the time and are VERY careful handling the IV bags. She said if there was a spill and it got on her, it would cause extreme burns to her skin, and the vapors would burn her lungs. spiills are a VERY BAD thing, she said. To which I had to reply, "but its ok to put it directly into my bloodstream through my jugular vein?" she laughed and said , Yep.

Scary stuff. Anyway, my White Blood Cell counts(WBC) are holding up very well. They've actually risen since treatment started from 5.5 to 11.7. I won't feel truly bad they say until that number drops to 0.1 or 0.01. Then I'll just be a blob laying on a mattress. Its coming, but hopefully not until the new stem cells are on board. As soon as the new stem cells create new WBC, I'll feel better. So the longer till the big drop, the shorter the duration of feeling the worst.

Looking forward to that......sheesh. I'm going to try and take some pix with my web cam today to y'all can see my room and stuff. Its not bad, but its definately boring. The food here's also pretty bad, thank God for Mom, Dad, Honore and Chris who bring me real food from time to time.

Shower time....ttyl. Oh, and I found out the chemotherapy also prevents me from going out to stud as my fertility has been destroyed. So my horse racing career is definately kaput. Have to find some other sport to look into. Maybe I'll lose 75 lbs and have a vertabrae removed and become a NASCAR driver.

T-4

This is a routine I'm not going to get used to, up at 6:00 am to the sound of the IV alarm going off again. Then, I open my eyes thinking Randall is here to change my IV bag and instead I get the huge guy from the Green Mile smiling at me and saying, "Morning sir, I need to weigh you." Seeing as how I've just been awoken to this startling image, I respond, "Are you going to pick me up?"

"No, why would I do that?"

"Because I'm too tired to get up." And proceed to literally stagger out of bed and onto the digital scale he's conveniently rolled next to my bed and placed so that I can practically fall onto it.

Obviously Proctor has faced non-morning people like me before. While I'm situating myself on the scale, he deftly slaps on the blood pressure cuff and pulse ox monitor and graciously asks
"how are you doing this morning?"

The voice in my head snaps, How the fuck do you think I'm doing as I fall onto your scale, which comes out as, "Great, I guess. I'll let you know once the lower half of my body has checked in." thinking to myself, this is too early for even a cup of coffee. Then Rodney arrives with my new IV bag and a simple question, "Want to take a shower? Pre-meds start at 6:30 and your Etopocide starts at 7. Then you'll be on chemo until 11, so no showering."

Guess I'm taking the shower. This routine of getting etopocide and cytarabin in the morning and again in the evening sucks. Just one of the rounds feels like an entire round of R-ICE did. Two rounds of R-ICE a day for four days. I've only gotten through one and I really cannot describe how wonderful I feel. Calling it being hit by a truck is too kind.

One important lesson though, the central line is a God's gift. Pain meds, like ativan and zofran, act instantly, but so do the chemo agents.

Thanks for all the notes of support. you are all wonderful and I REALLY appreciate them. Its very depressing to be in this little room(although it is quite nice), and feeling like I'm under seige all the time. I'm hanging in there, and doing well. The only issue I've run into is I have been taking in so much fluid that my blood pressure has risen from my normal, 120/75 range, up to 150/90. It came down over night, but if it goes up again they may give my lasix to for the fluid out of my system. I asked if it would disqualify me from next year's Kentucky Derby, being on the banned list in horseracing now. They said no, because it was used in a medical procedure. But went on to express concern that this won't make me fast enough to compete with thoroughbreds. Silly me, and here I thought everyone was like Lance Armstrong and got to pick a sport to excel at when they get through this, and my dreams of racing horses crashed to the earth.

Oh, and I passed my confusion test again. Here goes, and you have to answer quickly, you're not allowed to think about each answer for more than 10 seconds:
"What's today's month, date and year?"
"Where were you born?"
"What month day and year were you born in?"
"Who is the president?"
"Who was president before him?"
"What's you Mother's maiden name?"
"What's the name of this hospital?"
"How many siblings to you have?"
"When was the last time you had sex?" Actually, I'm still waiting for them to toss out that last one. I'm convinced its coming any day now. There's simply too much room to mess with patients, I wouldn't be good at that job.

Finally, THANK GOD for a loving wife and family who can bring me food and are willing to just sit here while I slowly pickle in these poisons. It really makes my day go so much better, especially getting some hot, decent food. I asked the nurse about the menu and she said its kinda sad beccause it was designed for short stay patients, not long term ones, and the selections are very limited.

I must also say the staff here has been terrific. They have all be so warm, gentle and thorough. they patiently answer even the dumbest of questions and really go out of their way to make me more confortable with the next phase of the treatment.

Good news today, its T- 4. Its early, but after tonight's infusion I'm half way through. I'll bust out today infusions just fine. They exhaust me, but that's about it. I want to see my blood counts, hopefully they've begun to come down. although the bulk of the coming down will be day T-0 through T-7.

I love my body, its been such a trooper. What a gift. I look forward to exercising it and getting back in shape when this is all over.

Drugs are here....ta ta for now

Day T-5

After a fitful night's sleeep, interrupted by my drip alarm going off every three hours, I finally dragged myself out of bed at 6 this morning. I got my premedications for this morning's chemotherapy, more ativan and prednisone, as well as Nexium for my stomach. I ordered an omlette and english muffin with coffee and climbed into the shower.

Showering with a central line hook upto a drip pump is kinda weird. I tape a baggie over the dressing on my chest where to port enters my body, then I roll the drug machine into the shower with me, park it where I hope it won't get wet, and off I go.

Then promptly at 0700, the drug began. First up, VP-16(aka Etoposide) which I have had before in my R-ICE treatments. Its not too bad, it does get me a little nauseated, but not enough to prevent me from eating my omlet. This Etoposide is roughly twice the dose I received previously, and I will have another round of it at 7 pm tonight. Oh joy. Immediately following the Etoposide, I get a blast of another chemo agent, I can't remember the name atm. So its 4 hours of chemo in the morning and four hours of chemo again in the evening. The drugs are really powerful and take their toll, but I feel pretty good so far.

Today I'll take some pix of my room and post them.

Day - 6

First day in the isolation unit, it was long, but not too tough. I had a million questions to answer once we got here, and while I was doing that, Dad was cool enough to bring my 3 bags of stuff up from the car. It seemed like alot when I was packing, but given a month of being here, and having unpacked it so easily, I think its just enough to get me through.

Thank God for my new computer, except that the internet bandwidth is so restricted I can't instant messenger Honore, which means I can't see Hope. :( I'm really depressed about that, but I think I'll just have to work out a way to get around it.

Had the B in BEAM chemo today, it hit me like a freaking truck. No nausea, but man am I exhausted. I feel like I could sleep for a month right now, and its barely 8:30 pm. Of course the ativan and prednisone steroids, as well as the benedryl, all through the central line sent me to the moon pretty quickly.

My room is nice. The floor is secured by two double doors and a pressure chamber visitors have to cross, and wash their hands in. And once they come to my room, they must re-wash their hands again. Infection controls are VERY strict up here. I'm on the 15th floor, and have a view looking west over the construction site of the new children's hospital. Nice view, noisy during the day though.

The menu leaves ALOT to be desired. There's only four dinner entrees and three lunches. So I'll have to get Honore and Mom/Dad to bring me some meals. Fortunately, they are allowed to, so that's good.

Gonna run, very, very tired. I have 5 chemo infusions tomorrow, so I don't know if I'll be awake enough to write, but I'll try.

Day Before Induction

First, thank you to everyone who supported the Leukemia Cup Regatta last weekend. We had a BLAST!!! Honore and I set a new record for individual fundraising by exceeding our goal. We raised $62,000!!! The event raised $250,000 total, and every had a blast!

I'm pretty much all packed up and ready to go to the hospital. I've got three bags of stuff, one of which is just snacks and pillows. I'm apprehensive, but handling it well. I'm mostly in a place of wanting to get this over with because I am tired of waiting.

The drugs don't really scare me, nor does the process. What I am most dreading is being away from Hope for so long. She can't even come visit. That's a big bummer for me, so I've spent alot of time with her in the past couple of days which has been great.

I do still plan to keep posting from the hospital, and when I can't I'll have Honi or Dad post for me. We're off to dinner at Chef's Station, one of my favorite restaurants in Evanston, for a last good meal before I go in.

Leukemia Cup Regatta Speech

Many have requested that I post my speech from the Leukemia Cup Regatta, so here goes. It's pretty long, so if you want a pdf instead, email me and I'll forward it to you. The speech went incredibly well, as did the entire weekend. We're exhausted, but thrilled to have had the opportunity to go have some fun before I go into treatment. Also, the indentation did not come through on the cut/paste, but should be pretty easy to follow...

For Now – Leukemia Cup Regatta Speech, August 22, 2008 Travis Wilhite

Thank you for participating in the 12th Annual Leukemia Cup Regatta. My name is Travis Wilhite, and I am a Non-Hodgkin’s Lymphoma Survivor. I am privileged and honored to be recognized as your Honorary Sailor this year. Privileged because it affords me the opportunity to share a little of my journey in the hopes of inspiring continued support for the Leukemia & Lymphoma Society and their mission to find a cure for blood cancers. Honored because there are hundreds of Lymphoma survivors in the Chicago area, and thousands across the country, who fight just like me for everyday.
I am so excited to be here tonight I feel like cheering. You see I have had three rounds of chemotherapy already this summer, which leaves most patients bed ridden. The reason I am able to stand here and share a bit of my story is that I have been blessed with an incredibly strong body which absorbs the blows of chemotherapy, shrugs them off and continues on about life. You are looking at one tough Texan, who’s not about to let cancer dictate the terms of his life. Don’t get me wrong, chemotherapy’s a bitch, but that’s only because cancer kills, and my cancer kills extremely effectively.
My story began four years ago, when I found a lump under my chin while shaving one morning. It turned out to be one of 14 tumors throughout my body. I had rare form of Non-Hodgkin’s Lymphoma which was well on its way to killing me. Non-Hodgkin’s Lymphoma is a white blood cell cancer. White blood cells make up the backbone of your immune system. They are so tough nothing else in the body can stop them. To protect our bodies from white blood cells taking over, they are born with chromosomes that cause them to self-destruct after 72 hours, which is why the common cold lasts 72 hours.
Four years ago, the chromosomes that stop my white blood cells quite working properly. My white blood cells wouldn’t die instead they collected in my lymph nodes and began taking over my body. Left unchecked, they would continue to grow and multiply, gobbling up my body’s energy and resources until I was no longer able to sustain them. With my diagnoses, I would have been dead in a matter of months had I not found that lump.
My doctor acted swiftly. Within days of the final diagnoses, I began 6 months of chemotherapy which led to another year in recovery. For the effort though, we were rewarded with remission. Sadly, my doctor told us my cancer is incurable. He strongly felt the first chemotherapy would give me 10 years of remission.
When it returned, my doctor assured me there were things we could do, including a stem cell transplant, which would slow the cancer’s progress. However, things will only get tougher, as each relapse leaves me with fewer and fewer weapons because many of the drugs and treatments only work once. Without research finding a cure, this will be a lifelong battle.
So, it was gone, but just for now. And with that, Honore and I returned to life with as much a sense of normalcy as we could muster.
In January of this year, we were blessed with the birth of our first child, Hope Elizabeth. We have had nothing but the time of our lives being parents. Those of you who already are parents, you know of what I speak. For those of you who aren’t, hopefully one day you will be blessed just the same.
Hope’s name sums up our outlook on life. We hope for a cure, but like good parents, we’re doing everything we can to support those who are working to find that cure. Thus, our continued support for the Leukemia Cup Regatta.
Life was great; we had everything going our way. Cancer in remission, a new daughter, and all the hopes and dreams a young couple like us could expect to enjoy. Then, on May 14th, a routine follow up exam revealed more lumps in my torso.
My cancer was back. The timing was awful, but cancer doesn’t care about timing. With one PET scan, everything came crashing back to earth. We were back in the fight.
The diagnoses caught everyone by surprise, even my oncologist. Although we hoped for 10 years of remission, we got four. The good news is we caught it early. The bad news is the treatment will use another bullet from our arsenal to buy more time. Treatment involves three rounds of high-dose chemotherapy, which I have already undergone this summer, followed by a Stem Cell Transplant, which should keep me down for 8-12 months. These treatments will be significantly tougher, but should give me 15-20 years of remission.
Three days from now, I embark on a journey only a handful of people have to make. On Tuesday, I am checking into the hospital to begin a month in isolation while undergoing a stem cell transplant. Stem cell transplants used to be called Bone Marrow transplants, but because of advances in medical research, they no longer involve removing stem cells from the bone marrow. Now, stem cells are harvested from the blood stream, making the procedure far safer for the patient.
An Autologus Stem Cell Transplant, which I will be undergoing, involves harvesting my own stem cells and freezing them. Then, doctors pump poisons into my body that are so powerful they will kill all of my bone marrow and all of my blood cells. All of my bone marrow will die, I will have no ability to make white nor red blood cells, no platelets, no leukegenes nor neupogenes nor any other cells related to my immune system. I will survive on blood transfusions, IV fluids and nutrition. This will take six days and occur in isolation as I will be at a tremendous risk of developing an infection, which could then be fatal.
On the 7th day, with my system completely destroyed, the doctors will re-introduce my stem cells, pump me full of antibiotics, antivirals and antifungals and then sit back and watch the drag race. Will my stem cells find their way back into my bone marrow, and begin to re-create my immune system faster than the bugs can wipe me out? This will take a month in the hospital, but that will only be the beginning.
My new immune system will be so delicate for the first year that I will have to take tremendous precautions to avoid infection, including no travel, no crowds, and limited going out in public. Additionally, my body will be so damaged from the chemotherapy it will take 6-8 months just to feel strong enough to begin returning to normal. My oncologist says after 12 weeks I will feel like I just have a really bad flu, and that will probably last another 6-8 months. And this factors in that I am so strong and recover so well, many who go through this process take up to two years to return to normal. Hopefully, I will be strong enough to return to racing next summer. I can’t tell you how much I hate having to watch the Mac on my computer. But right now, this is the best medicine has to offer.
Five years ago, this process had a fatality rate of 30%, meaning that 3 out of every 10 patients who underwent an autologus stem cell transplant died. Patients underwent the procedure despite the risks, because it is the last line of defense.
Today, it remains the last line of defense against many cancers, including mine. However, advances in research have lead to breakthroughs such as the use of apheresis to harvest stem cells from the blood stream, more powerful anti-viral medications and more targeted chemotherapeutic agents with fewer side effects. All of this has resulted in the fatality rate for the autologus stem cell transplant falling to 2%. Simply because of the dedication to research of groups like the Leukemia & Lymphoma Society, and the support of caring people like the boating community, procedures are improving. And we are getting closer to finding a cure.
I will survive this treatment and regain remission, however, the cancer will only be gone for now. This process still will not cure me of my disease. To me, having to spend a month in isolation and up to a year in recovery, just to be in remission for now, is not good enough.
Instead, I dream of a day when I can take a pill that controls my cancer, or a transplant that will cure me. And, I don’t dream of this just for me, but for the hundreds of thousands of other patients diagnosed with blood cancer each year.
As a survivor, I have a responsibility to do my best to advance research so that I may be the husband Honore always wanted and that we can share our lives, our hopes and our dreams together, and make them all come true. I will do my best so that Hope grows up with a father to guide her, pick her up and dust her off when she falls, teach her how to sail, and one day walk her down the aisle. But more importantly, she and her generation will not have to face a lifetime of for now.
I am in the fight of my life, and I am going to win because of the support of caring people like you who take time out of their lives to do something for someone else. Cancer may kill, it may screw up the best laid plans, it may make light seem un livable, but it cannot take away my mind, nor overcome my heart and it will never break my spirit. There will be a cure, and thanks to your help, we will find it.
For now, let’s go have some fun racing on the water. And thank you again.

BEAM Chemotherapy

Ok, so I thought I would share some snippets from the 15 pages they gave me about the drugs I get next week. The nurses told me to expect most of the side effects listed to occur as I am receiving the maximum dosage of these agents. I've had a few people ask me about the chemo and what the drugs are like, so I'll share, this comes from the drug information sheets the hospital gave me....

Carmustine, BiCNU (B in BEAM) - Carmustine interferes with the growth of rapidly growing cells such as cancer and stem cells, eventually causing them to die.
Side effects include:
chest pain
difficulty breathing/wheezing/shortness of breath
low blood counts - carmustine may decrease the number of white and red blood cells as well as platelets,
signs of infection - fever, chills, cough, sore throat, pain or difficulty passing urine
Signs of decreased platelets or bleeding - unusual weakness or tiredness, fainting spells, lightheadedness
Nausea
Vomiting
Seizures
Yellow of skin or eyes
Flushing of the skin and red eyes
Headache
Loss of appetite

Etopotside, VP-16 (E in BEAM) - Etoposide interferes with the growth of cells.
Side effects include:
Severe Nausea
Vomiting
Blood in Urine/Stool
Hairloss
Mouthsores
Signs of Infection - fever, chills, cough, sore throat, pain
Blurred Vision
Shortness of breath
Lightheadedness, Dizzy spells
Fatigue or exhaustion
Loss of appetite

Cytarabine, ARA-C (A in BEAM)
This medicine reduces the growth of cells and suppresses the immune system.
Side effects include:
Low blood counts - increased risk for infections and/or bleeding
Signs of Infection - Fever/chills, cough, sore throat, pain or difficulty passing urine
Signs of Decrease Platelets - Bleeding, pinpoint red spots on the skin, black tarry stools, blood in the urine
Signs of Decreased Red Blood cells - unusually weak or tired, fainting spells, lightheadedness
Breathing problems
Changes in Vision
Feeling faint or lightheaded, falls
Fever
Headache
Mouth Sores
Nec stiffness and/or pain
Seizures
Stomach Pain
Unsteady in walking
Vomiting
Side effects that usually do NOT require medical attention:
Bone pain
Muscle Aches/Pains
Confusion
Dizziness
Feeling tired/weak
Loss of Appetite
Nausea

Melphalan (M in BEAM)
Side Effects include:
Allergic reactions like skin rash, itching or hives, swelling of the face, lips or tongue
Low blood counts - Increased risk for infections and bleeding
Signs of Infection - Fever, chills, cough, sore throat, pain or difficulty passing urine
Signs of decreased platelets or bleeding - bruising, pinpoint red spots on the skin, black tarry stools, blood in the urine
Signs of decreased Red Blood cells
Breathing problems
Dark urine
feeling faint or lightheaded, falls
cough that does not go away
mouth sores (they will be bad enough to require a morphine drip according to the nurse)
nausea,
vomiting
pain, swelling, redness
Unusual bleeding or bruising
Weight Loss
Yellowing of eyes or skin
Diarrhea
Feeling of warmth or tingling in extremities
Hair loss
Nausea

These drugs will be given daily for six days through the vascular catheter in my chest. Basically, I'm really not looking forward to this at all. I know I will get through I, I'm certainly strong enough physically and spiritually, but emotionally and mentally, I'm still not quite ready to dive right in and start having the cocktails.

Lists like this make Survivor seem like a fitting description for cancer patients. It takes everything, courage, strength, determination, focus, love, appreciation and patience. I hope I have enough of them.

We're off to the Leukemia Cup this weekend so I won't be posting again until Sunday or Monday. I check into the hospital early Tuesday morning and treatment begins immediately. I hope to keep posting from the hospital during my treatment. Have a good weekend!

TTYL,

T

One Week to go

Well, I'm sitting here on my week of rest prior to my stem cell transplant, and I realize I'm getting out and doing as much as I can for two reasons really. First, because I'll be laid up for the next 12 weeks according to my doctors. Four weeks in the hospital and then 8 weeks at home before I can go out at all. So, that's one reason to get out and do alot.

The other reason is it gives me something to think about other than going into treatment next week. By staying busy, I don't have time to think about how much its going to hurt, or how I'm going to feel(crappy), or basically how just plain scared I am. So when my plans fell apart for today and I find myself resting quietly at home, my mind begins to wander and let me tell you that's a scary thing.

To combat my mind going all over the place, I've started a packing list and begun pulling things together. I cannot believe how long it is, but Laura, the transplant co-ordinator, told me not to worry, most folks bring several bags in with them. "It's not like you're only going to be here a day, you will be here a month."

So here's the short version of what I'm supposed to bring:
Clothing(I don't have to wear a hospital gown)
Tennis/Walking Shoes(for physical therapy)
Pillow/Blanket(have to be brand new in the bag or dry cleaned)
Laptop
iPhone
New toothbrush, softest bristle possible
Glasses/Contacts
Headphones
DVDs/Books on tape/Book/Entertainment stuff(ie Cribbage board so I can let Dad beat up on me.)
Snacks(peanut butter crackers, lemon drops, crackers is what they reccommend)
Sodas(again, their reccommendation)

I go in on Tuesday the 26th, which is known at T-6. I get the BEAM Chemotherapy until T-1(Aug 31), then I get a rest day(T-0) followed by re-infusion (T+1). I will be feeling very bad during this part, but the worst will be T+6 through T+12, as this is when I will have no bone marrow or blood cells(except what they transfuse into me). By T+12, my stem cells should have found their way into my bone marrow and begun re-populating. If all goes well, I'll be out by T+21 or T+22, at least that's what I was told to plan for, I could get out early if my counts are strong enough.

But getting out of the hospital is only the beginning. I will be at home under very strict infection controls for the following 4-6 weeks. Basically, this will be the same as being in isolation, only I get the luxury of my own bed. A home health nurse will come by once or twice a day for blood draws, to give me medications and make sure I'm doing well. I will be on antibiotics, antivirals and antifungals during this time as my new immune system will be extremely delicate.

My doctor says I could be well enough to go out by Thanksgiving, and with any luck will be strong enough to go to the Leukemia Cup Fantasy Sail in Florida December 13-15th. Otherwise, I'll be restricted to home. Yippee.....man, its like 90 degrees out and I'm contemplating that I won't get to be outside for any length of time again until almost Christmas. WOW, that's crazy.

More later, I want to post the BEAM chemotherapy drugs and side effects, and I have Weight Watchers worst nightmare coming too.

TTYL, Trav

Sunday Night Thoughts

After a nice, relaxing weekend of not doing a whole heck of alot, I'm looking forward to a week of resting up for the Leukemia Cup Regatta. There are no doctors appointments this week, and I only have one blood draw which is Thursday when the homecare nurse comes to the house to change the bandage on my central line.

We've been squeezing in all my favorite things to do in the last couple of days, and are going to spend the next week doing more of the same. We figure I've got a month in the hospital, then six weeks bedrest at home, and then I still won't feel all that great. So we're cramming in a bunch of fun stuff now.

We went to the air show this weekend, the Blue Angels are super cool. We went sailing on our friend's sloop, we went to dinner at RL(my very favorite restaurant, the steak Diane is still my favorite...and don't forget the Crepes Suzette for dessert...Mmmmm.)

A week from Tuesday, the transplant begins. I'm psyching myself up as best I can, but I am dreading the six days of chemotherapy. Woof, I just don't look forward to it at all. I'll get through it and be fine, I know it, but that doesn't really make it any easier.

I'm off to have some fun......ttyl.

Quiet Day

God is it great not to have to go to the hospital today. No apheresis, no blood draws, nothing. It's AWESOME. First quiet weekday in two weeks, and I'm not sure what to do with myself. I'm exhausted, and my catheter still hurts a bit, but I'm feeling better overall.

I'm very relieved that the stem cell harvest was complete in two days. What a treat, we were prepared for 4-5 days of having to go in for collection. The procedure is not painful, it just takes a long, boring time where I'm tied to the apheresis machine. I wasn't even allowed to go to the bathroom. If I had to pee, they gave me a jar. #2 was simply hold it till the end. Once started, they couldn't stop the apheresis machine.

What was painful was the high doses of Neupogen required to elevated my stem cell and white blood cell count. My back still hurts from that. Ouch. But, thankfully, with the end of collection, I'm done with Neupogen for the time being. They say I may get more during the transplant to help stimulate my new immune system.

Preparations are well underway for next week's Leukemia Cup Regatta! We're getting very excited. I wrote the first draft of my notes for being the guest speaker Friday night. I think its pretty good for a first cut, but know there's alot to work on. I really want to share what's going on in my treatment without sounding like oh poor me. It will be good when its finished, I just know there's alot left to do.

I'm off,

T

Collection Day

Day two of collecting stem cells went GREAT! We arrived early this morning to find out from today's bloodwork that my body's responding excellently to the Neupogen. Yesterday, we collected 5.5 Million stem cells with my white blood cell count at 53.5. My CD34 count(actual stem cells) was 0.06, which is considered medium, so getting over 5M cells was terrific. My platlets yesterday were low at 52, which is actually good because it meant the machine could run faster with less risk of a clot forming in the machine.

Today's blood results were outstanding because my white count was up to 97.9, which is HUGE. My CD34 was at 0.05, which was terrific because normally after collecting so much yesterday, it would be about 1/2 of yesterday's value, which is why apheresis can take up to a week. In my case however, we were looking to get 2.7-6.1 Million cells today. Anything that created a total over 10 Million cells would be enough to end the collection process.

We got 6.7 Million cells!!! I'm done with collecting in two days instead of 5-7!!!! YAYAYAYAYAYAYAY!!!!!! NO MORE NEUPOGEN!!!!! Wohoo!!! I have 12.25 Million cells which is enough for three transplants. I'm now a free man until August 26th!

I do have to be careful with crowds, raw fruits/veggies, and no strenuous activity as I still have my catheter in. Honore thinks I should give it a name because its rather large and hanging off my chest rather strangely. She's leaning towards Herman, I'm leaning towards Ike. We'll see.

The best part of today, beyond not having to go tomorrow, was having my blood drawn from my port. OMG, it ROCKS to not have a needle in my arm first thing in the morning!!! I would be a terrible drug addict, not only can I not give myself a shot, I'm so sick of needles poking me I can barely get them anymore. I seriously don't understand how drug addicts do it. They are truly nuts.

Anyway, that's it from the front today. Hope all is well, keep smiling.

Trav

Apheresis Day 1

Not too bad really. Dad and I got to NMH about 7:45 this morning, got my labs started and went to interventional radiology to get my tunnel vascular catheter put in. They put me in the twilight, so I didn't feel much, which is good because this tube is pretty big and probably would have wigged me out had I seen it going in. Then, when I was sober enough to walk, we went back to the blood lab to start the apheresis.

The machine that spins my blood and pulls my stem cells out looks kind of like a wild, Rube Goldberg contraption. It has little lines running everywhere and like 4 pumps on it and a bunch of different bags hanging on the top. I kept waiting for a song like Chitty-Chitty Bang-Bang to start playing, but no go. Instead, they hooked me up to it and basically I just sat in the chair while it pulled blood out of one of the ports in my chest and returned it through the other. Because I got the larger, more permanent vascular catheter, they were able to open the machine up to a relatively high speed, which meant that instead of taking 5-7 hours it only took 3. Dad and I were super happy with that.

Then, I got the lecture about keeping the port clean and how the home health care folks would be coming by once a week to change the dressing and clean the port. Honore and I will have to flush it daily with saline, but the heparin and other clot preventing drugs have to be administered by a nurse. I didn't understand that the port goes directly into my Inter-Jugular(I think that's what she was saying) vein, which is one of the body's largest. Because of this, infection risk is very high and any infection would be spread to my heart quite quickly. Additionally, they have to keep me on blood thinners because if I developed a clot around the port inside the vein, and it broke loose....well, let's just say thanks for playing. Wasn't aware of those risks going in, but I'm not worried. We'll keep it clean and be good. Having the Tunnel catheter means no more needles!!!! YAYAYAYAYAYAYAYYYYYYY!!!

The best part of the day was the twilight sedation wiped out the bone pain from the Neupogen. I've decided Neupogen is an evil medication. Simply evil. It makes my bones hurt so freaking bad. And last night, in an effort to take the edge off the pain, I made the mistake of putting an ice pack on my back. OMG DID THAT HURT!!! I talked to the nurse today who explained that it hurt because the cold constricted the vascular pathways leading into my bone marrow, which all the excess cells were using to try and get out. Wow, would have been handy to know that ahead of time.

Anyway, they need 10 Million Stem cells from this harvest. According the early returns from the machine, I should probably get 2-5 million today, so I should be done Thursday or Friday at the latest. After than, I'm free until Tuesday, August 26th, with the exception that I can't do anything strenuous because of the port and no swimming. But that means I can do the Leukemia Cup Regatta, which I'm really looking forward to going out to play that weekend.

Honore and Cupcake are doing very well. Cupcake's sitting up on her own, and playing with making noises, most of which are at the top of her lungs. She's also reaching and grabbing any and everything within arms reach including Brutus(which is not his favorite, but he's a good sport about it). She's fast enough to dump Honore's dinner off the table and onto the floor the other night, which caused Brutus' opinion of the baby to skyrocket, as to him this was manna from heaven.

Honore's super busy with work, as is usual in August with all the kids getting ready to return to school. Every year is like this, crazy in August, then slow in early September as the Moms get the fall schedules aligned. Good news is we're ready for it, bad news is its alot of extra hours when we're already pretty busy with me and the baby. She's a trooper though, and will get through it.

Love,

Trav

Wednesday Update

I met with Dr. Grinblatt for the last time prior to the transplant this morning, he said I was still doing great. I asked about my blood counts, and he said the R-ICE really didn't take them down much at all, and that's the part that has him so surprised. I asked if that would be a problem for the transplant, if the BEAM didn't take my counts down. He laughed and said, "Oh, BEAM will bring them down, no doubt."

So, I got that to look forward to, ugh. :) Anyway, I'm feeling great. I'm really exhausted today, because we overdid it a little yesterday, but it was worth it. I am going to have to sleep this afternoon though, whew I'm tired.

The meetings at Northwestern Memorial Hospital(from now on NMH), went very well. All my apprehension eased as I got to know the apheresis nurse and saw how the collection process will work, and then meeting with the transplant coordinator and finding out about my room and what I can/can't bring really made me feel much more confident. This is not going to be fun, but I can get through it. And its really amazing how much they let the patient control their environment. I can bring my own pillow(has to be brand new or direct from the dry cleaner), blanket, pictures or poster, comfortable clothes(I don't have to wear the stupid gown the whole time), snacks of my own choosing(although they made some good suggestions), DVDs, computer(they do have high speed I can use), basically alot of the creature comforts of home to help make the hospital room a little more comfortable.

Afterwards, Mom, Dad and I went to Columbia Yacht Club for lunch where we met our friends Tracy and Matt Howard who own the Alden Sloop Allegro, which is a gorgeous two masted wooden schooner built in 1929. They have carefully rebuilt it, and were kind enough to take us out for a sail. There was very little wind, and it was steaming hot, but I loved every minute of it. Thanks Tracy and Matt. We were joined by our good friend Gary Hooper, and a good time was had by all.

Needless to though, it made for a long day and I'm pretty worn out today. Was it worth it? Absolutely! Am I doing anything today? Absolutely not!

I feel good about my transplant, and after yesterday, I feel good about going to NMH and the support I will receive. I have known it would be ok, but yesterday was finally putting a face on the transplant team, and dealing with the reality that its here. It's funny, a friend of mine asked me the other day how was I always so upbeat and happy. How do I do it as I go through the chemo and the transplant. I didn't have a good answer for her, so I just said, "I don't know. I kind of think of it this way. Cancer, to me, is like the sky being blue or the sun coming up in the East. It's a part of my life, and that's it. I choose to be happy, because I want to be happy. Cancer can't change that."

I'm ready now.