Sunday, August 31, 2008

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.

Saturday, August 30, 2008

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

Friday, August 29, 2008

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.

Thursday, August 28, 2008

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.

Wednesday, August 27, 2008

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.

Sunday, August 24, 2008

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.

Thursday, August 21, 2008

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

Tuesday, August 19, 2008

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, August 17, 2008

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.

Wednesday, August 13, 2008

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

Tuesday, August 12, 2008

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

Monday, August 11, 2008

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, August 6, 2008

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.

Monday, August 4, 2008

Big day tomorrow

My blood counts today were good. They were low, as expected, but high enough that once again I did NOT need a blood transfusion. This is great because it means my bone marrow continues to respond even though its been through three rounds of R-ICE. It also sets me up for a really good harvest next week, which is terrific.

Tomorrow's a big day because Mom, Dad and I are going down to Northwestern Memorial Hospital to confer with the blood bank, as required by law in fact, and then get my neupogen for this weekend's injections(Honi has to do those. She's very excited, its make up time for the years of infertility injections I had to perform on her. I'm kinda frightened.) and finally visit the facility where I will be staying next month. I'm a little nervous because going there and seeing it makes it all the more real.

Somehow, I've been able to keep things at an arms distance, in terms of actually having to go through the transplant, but tomorrow that all comes crashing to a halt. I'll be fine, but its still nerve wracking.

Big thunderstorms tonight missed us, but made for an interesting evening. Talk to ya tomorrow.

T

Sunday, August 3, 2008

Sunday, Sunday, Sunday

Don't know why that struck me, but Sunday seemed to sum it up. It has been a tough weekend, this round of R-ICE was quite a bit harder on my system than the previous two. Probably because my system never fully recovered from either of the previous. They do that on purpose, so that each round takes my blood counts a little lower. It sucks spending all day Friday, Saturday and Sunday morning with such horrible nausea, even plain old water doesn't taste good. Ugh. At least I'm feeling better this afternoon, still a bit of a stomach ache, but not like it was.

Big week this week as things begin in earnest for the stem cell transplant. I have blood tests and doctors appointments tomorrow, Wednesday and Friday. They are making sure my blood cell counts are low without being so low that my major organs become oxygen deprived. They are also doing a bunch of tests to make sure my system is producing new stem cells, and beginning Friday, they will be giving me massive doses of Neupogen to jack my stem cell production as high as they can get it.

The more stem cells they can get my body to produce now, the less room there is for them inside my bone marrow, and so they detach and flow freely in my blood stream. With a high enough concentration of them in my blood stream, the doctors can use a centrifuge to harvest the cells for use in my transplant, without having to invade my bone marrow to get at them. Basically, this is why what used to be called a Bone Marrow Transplant, is now called a Stem Cell Transplant, because they no longer have to invade the marrow.

Also, Tuesday, we're going to visit the blood bank at Northwestern Hospital and tour the facility where I will be staying while in isolation. I'm not looking forward to going into the hospital, but have resigned myself to the fact that for the long term, this is simply the best solution at this time. I struggle to imagine being in a hospital room with limited visitors for a month, but I'll get through it ok. I've been working on putting some things together to give me stuff to do on my computer and hooking up a webcam so I can see my little pumpkin, Hope.

I found out I will be going into the transplant unit on Tuesday, August 26th. I spoke to my doctor Friday and I will be able to attend some of the Leukemia Cup Regatta the weekend before that, I'm so very excited about that. We work so hard each year to fundraise and put on a great party, it was going to be tough to miss this year's event. Now, at least I get to go for part of Friday night. I have been named the Honorary Sailor for the event, and have been asked to speak briefly to the audience, although I'm not sure what remarks I'm going to make yet.

For more about the Leukemia Cup Regatta, click the picture to the right or log on to www.sailtravis.com or http://www.leukemia-lymphoma.org/regatta/all_page?item_id=188790. Thank you for your support, its through the efforts of research organizations like the LLS, that I have any hope of beating this cancer once and for all. If you are interested in attending any of the Leukemia Cup Event, simply log on to www.columbiayachtclub.com and click on the Leukemia Cup link for more information or to contact the club and make reservations.