Friday, November 28, 2008

Day 18, still waiting...

I hope everyone enjoyed their Thanksgiving! Jackie and I had a nice non-traditional dinner here at my place (by the way, the pic is of a sunset from my deck a couple of nights ago). I burnt a steak on the BBQ and Jackie had some dry tofu! Oh, well, the side dishes were good and we had some awesome desert. Look forward to next year where we can do the turkey and all the trimmings with family :-P

A quick update on my situation... I'm still waiting for my neutrophils to get to the magic number of .5. Right now I'm at .26 so I'm halfway home I guess. One bit of good news is my LDH level has gone down (thank God!) to 200. So, it looks like Claudia (my P.A.) was right regarding engraftment and elevated LDH levels. I'll look forward to this going down more to normal levels in a few days.

Tuesday, November 25, 2008

Day 15 Engraftment Begins...

Just a quick update... It's day 15 and it looks like I'm starting to engraft, finally! I'm still neutropenic but at least there are a couple of neutrophils now floating around in my body and hopefully they'll get busy and start dividing like crazy so I can get back out into the world (without being paranoid). All my other counts are starting to come back too which is good. One thing I'm a little worried about is my LDH count. It's at 266 which is higher than normal and sometimes an indicator of cancer activity. I'm researching to see what the relevance is of this pertaining to Hodgkins. My P.A. Claudia said the increased level could be from the engraftment process (LDH "I think" measures cytokines which is a byproduct of cell division). So that seems to make sense as my cells are dividing at a rapid pace as result of the stem cells engrafting. We're going to keep an eye on it and I'll try not to worry.

So, other than feeling tired most of the time, I doing pretty well! The little palpable node that is under my arm is still very small, almost gone (whereas before, it was about the size of a coffee bean). My chest is feeling better, my back is feeling pretty good and I don't have any pain in my posterior rib which has the lytic lesion. I think this transplant is doing the job they want! That said, I found out the plans for my next transplant. Unfortunately, they have me slated to receive my TBI (total body irradiation) for 4 days starting on Christmas Eve! I'm trying to get it moved up at least a week but apparently they're really booked up. So if this doesn't change, I can look at it two ways; I can bitch and moan that I'm going to be spending Christmas Eve and Day getting nuked from head to toe or I can look at it as the greatest Christmas present anyone can get, a chance at a cure! I think I'll choose the latter attitude as there's nothing I can do about it and bitching and moaning isn't going to do me any good anyway... How's that for "staying positive" ;)

Forgot to mention, picked up my frozen holiday meal today! Including the ham and turkey plus potatoes, rolls and canned veggies they threw in a pumpkin pie! The box has to weigh 25-30 lbs. The plan is to freeze it until my Mom gets here and have a holiday party with some friends. Hey, there's another positive about getting TBI over Christmas; I'll have a chance to enjoy a holiday meal without feeling like crap. Life is good!

So, until next time, I hope everyone reading this has a great Thanksgiving!! Oh and by the way, go Lions! (I have no shame...)

Sunday, November 23, 2008

Happy Birthday Honey!

I wanted to belatedly post a happy birthday wish to my girl Jackie! We had a nice relaxing evening and made her favorite birthday meal, spaghetti and eggplant :-p. We ate and watched our favorite Sunday shows, Dexter and Entourage. Kinda mellow I know but such is life going through an SCT. Next year will be grand!!

I love you babe and appreciate everything you do for me!

Thursday, November 20, 2008

See Ya Dad! Day 10

So, just arrived at the clinic after dropping my Dad off at the airport. I think he's leaving at the right time as it seems like the rainy season is finally arriving here (although it's supposed to be nice this weekend ;). It was nice having him here for support and comfort. Also nice to have someone to watch all of my sports with! It ran the gamet of Michigan sports with the Wolverines (sucked), Lions (sucked), Pistons (awesome) and Wings (awesome)! We also had a chance to do some BBQing and of course wrestling with my crazy dog chili. I'll miss you Dad!

As for me, I'm here at the clinic waiting for some platelets to arrive as I need an infusion (my platelets are 11 yikes!). I'm also on the borderline for red blood cells but I think I'm going to wait on them as my Hematocrit has been trending up. We'll see how it looks tomorrow and go from there. Otherwise, everything is going well I think. So far, no fevers (knock on wood) and very little nausea and G.I. problems. Well, I guess I have been having some G.I. problems but just pretend they're from eating White Castles (man, I miss that out here!). Reminds me of Harold and Kumar... if you haven't rented it, it's pretty funny (silly funny). And I digress....

So for now it's life back to normal (relatively speaking) until my next transplant (barring any catastrophe's). My Mom is due to arrive on Dec 6th and will be staying through the holidays (bless her heart!). Speaking of holidays, I received a phone call the other day from volunteer services here at SCCA letting me know that I was selected to receive a free Thanksgiving dinner! I just have to come pick it up next Tuesday (it'll be frozen). They told me they have a turkey, ham, veggies, potatoes and possibly desert in there with other odds and ends! I think we'll wait to prepare it however as it'll be just Jackie and I next Thursday and she's a vegetarian. Can't see myself eating a whole turkey and ham by myself ;).

That's pretty much it for now. I'll probably update this weekend. Hopefully I won't be neutropenic by then. Jackie's birthday is this Sunday and I'd love to take her out to dinner... We'll see-

Monday, November 17, 2008

Day 7, slow moving...

Well, just a quick update, it's day 7 and I am now officially neutropenic. That is, my white blood cells and neutrophils are at zero. What this means; I have absolutely no immune system whatsoever and totally susceptable to any germs, bugs, viruses, etc. So far, I'm bucking the trend according to Dr. Press who says that 19 out of 20 patients land in the hospital with a fever at some point during this protocol. I really hope I'm the one person out of the 20 (I really don't want to go this time) but realize it's still a strong possibility.

As for everything else, I'm just taking it easy obviously... My Dad is still here and we both enjoyed some awesome Chili (not my dog) Jackie made yesterday! She actually got the recipe from Barack Obama online (hope her Dad doesn't find out ;). It had the perfect amount of fire, two kinds of beans (kidney and black) fresh green peppers, onions, garlic, yada yada yada... I had my second bowl for lunch today, ohhh yeaahhh! Hopefully this batch will give me some energy as I'm really dragging ass right now...

More news to come as it happens...

Thursday, November 13, 2008

Living a Dog's life (Somewhat)

Well, it's day 3 and so far so good... I don't know who's lazier me or my dog Chili! Luckily I haven't had any major issues or drama yet unless you count the tongue lashing I got from my nurse for not showing up at the clinic on day 1! That's right, I blew off my first clinic on Tuesday as I was still exhausted from such a long semi-traumatic day on Monday. I showed up yesterday at clinic and my nurse named Dot (no joke) made me call in my Dad and Stepmom to the office. She then proceeded to tear me a new one not to my face but to theirs. It didn't stop there however... My P.A. came in next and was a little softer but had the same message, "you need to be here every day for us to check you out". Ok, Ok I said, I understand. Next was my transplant doc who started to go into it and I finally said enough is enough already! I UNDERSTAND! So we finished the session and they sent me down to get x-rayed as I've been having some pain on my left side when I inhale. Got the results back today and my P.A. Claudia said it looks good except the lytic lesion I have on my rib is still there although there's no way of knowing it's still active with canser. By the way, I mis-spelled canser on purpose and will continue to do so. There's a gal named Kris Carr who is a survivor and started a web site, filmed a documentary and wrote 2 books who gave me the idea. Her site is Crazy Sexy Cancer and she said intentionally mis-spelling canser kind of takes the stigma out of it. I like it so I think I'll do the same. Kinda cool there's another survivor out there who shares my name (although she spells hers with a K). I actually discovered her when I first got diagnosed and Jackie and I were flipping channels. Her documentary happened to be on Discovery Channel and the timing couldn't have been better.

Anyway, other than going to the clinic everyday, I've been laying low like I said. I'm still painting and putting the finishing touches on another piece of work. I say a piece of work because my hobby is a work in progress :) I am getting a little better though (I think) and one day might have the guts to put a pic of one here.

Also, my Dad will be dropping off my Stepmom Marty tonight at the airport. I really appreciated her coming here and taking time off of work to help out. My Dad will be staying with me until the 20th I think. I'm hoping that I'll be able to stay out of the hospital until my next transplant. The nurse told me that my counts are going to plummit any day here and I'll be vulnerable to infection. I just need to keep taking my temperature and make sure I'm hydrated. There's a chance I'll get through this one without having to be hospitalized but it's a slim chance... For my next transplant however, I will for sure have to be hospitalized as my doc says he's never seen anyone go through the protocol (2 HDC's and TBI) and not have to spend time in the hospital. I guess the average is 14 days. By the way HDC=high dose chemo and TBI is total body irradiation. I'll cross that bridge when I get to it...

By the way, I just wanted to ask anyone who prays to keep my friend Marsha in your prayers. She just found out yesterday her SCT didn't work. She has been fighting relentlessly and really suffered along the way. My heart goes out to her and her family. Her next move is GND chemo and then possibly a trial drug or mini allo transplant. I wish her the best...

Monday, November 10, 2008

Day Zero 1st "Re Birthday"

So, I just got home after a long day at the SCCA... "You say it's your birthday, du du du du du dudu"! Well, it didn't feel like a birthday but I'm glad I'm here at home alive and well.

My day started off with the usual blood draw, no problem. I then went up to infusion where I would receive more hydration (mind you, I had been doing IV hydration the last 24hrs. at home with a pump). By now, I was ready to burst... After this, the nurse came in and gave me an elephants dose of benadryl and the room started to spin and I couldn't lift my head off the pillow, crazy... Combine that with Attivan and Zofran and I was a certified zombie. Oh, by the way, I agreed for some reason to take part in this trial their doing with Zofran to see if patients administered the drug had reduced nausea and vomiting while getting infused with stem cells. Later, I would be kicking myself as the guy who was running the study kept asking me after each bag of stem cells how nauseous I was... I was doing fine on the first bag even though it felt like (and tasted like) I was swallowing little pins and needles. To quell this, (I thought) I would drink chocolate milk to coat my throat and minimize the "uncomfortable" feeling in my esophogus (this would later come back to haunt me). Not to mention, my head and shoulders we're blazing on fire for which the nice nurse gave me a cool washcloth to put on my head. After the third bag, the trial guy asked me how nauseous I was and I threw a number out of 4 and asked him "why are you asking me this?" and he reminded me I volunteered for the study... Damn, I forgot! So the fourth bag starts dripping and he asks me and I throw out a 2 (between 1-10) and shortly thereafter, I was hurling chocolate milk, grape juice (and the rag that was on my head) into a bucket for all 7 people who were in the room with me to see! Everyone played it off though like it was no big deal which was good... After that, I started to feel a little better and got through the last two bags. Thank God that's over, now I get to do it one more time in around 4 weeks, yeehawww!

From here, I just have to wait for the stem cells to "engraft" so my immune system can bounce back in around 10-14 days.

And the fun is just beginning...

Sunday, November 9, 2008


Well I received my first high dose chemo today and thankfully it was drama free. In fact, the hydration (so far) has been the worst part. I had to get up at 6:00 a.m. this morning and hook myself up to 1000ml of sodium chloride mixed with a little potassium. I ran this (a little pump in a bag) until I arrived at the clinic at 10:30 where I was given Zofran, some more saline then my chemo. I'll have to be hooked up to this pump until tomorrow morning so the Melphalan is completely flushed out of my system. It has to be out of my system for the stem cells to survive when I get them back tomorrow.

The crazy thing is my high dose chemo infusion took less than an hour to administer. Hard to believe this short amount of time being given chemo can do so much damage to my immune system. This 60 minutes of infusion is going to completely wipe out my bone marrow, and most of the other rapidly dividing cells in my body. The only thing that will save me now is stored in a freezer at the SCCA! That said, I'm praying the Melphalan kicks the crap out of the Hodgkins cells that are still lurking in my body. I will go to bed tonight visualizing the tumors in my body shrinking and dying off.

Luckily (for now) I don't feel too bad... Just had a couple slices of pizza and they're staying down with no problem. In fact, so far the only thing I feel is a little fatigue. I know this will change over the next few days though. I'll try and update tomorrow when I get my cells back.

Thursday, November 6, 2008


I never thought I'd say this but Costco is awesome! I went today and loaded up on SCT supplies (Hepa air filter, frozen dinners, protein powder, juice, etc..). Man, it's easy to drop a boat load of money in that place as there's so many deals! Unfortunately, I have to watch every penny these days living on long term disability checks...

I also found this great art supply warehouse not to far from Costco and loaded up on canvases and bought a new 10 tube acrylic paint set. In fact, I just got done with a painting here at Jackies. It's sort of an abstract looking sun with a black background. I've found painting to be one of the most relaxing soothing things I've ever done. Some of my pieces turn out ok and some look like third grade work! With that said, I'm really enjoying it and find it therapeutic as it helps me keep my mind off of cancer (which of course is a good thing). One of my Hodgkins buddies, Duane from the Bronx ( started a thread on our Hodgkins forum talking about hobbies/interests that people have picked up as result of having cancer. He happened to pick up photography and has some really cool shots you can check out on his blog. The guy is a big time warrior as he's gone through an auto transplant like the one I'm getting ready for as well as an allo transplant where he's received a donor's stem cells. The allo is much tougher as many people develop a condition called graft versus host disease where the donor cells start attacking not only the cancer cells in your body but your good cells as well. This can be controlled but the side effects are pretty tough to say the least and a lot of times can be fatal if they get out of control. Duane definately has my respect.

By the way, I was glad to read that my other Hodgkins buddy Bekah is doing much better with the experimental drug she's on to control her refractory hodgkins. She just had a PET scan and after two cycles, the drug has reduced her disease drastically and her side effects are much milder now as they've adjusted her dosage.

There are so many others on the Hodgkins board who have or are inspiring me to get through these next few months. Not only has the board been great for support, I have to say I've learned most of what I know about my disease from it. I've actually suprised (and probably irritated) my doctors more than once with some of the questions I've asked them based on what I've learned from others on the board.

I received good advice from a former co-worker who told me never forget "who's driving the bus" when it comes to getting treated for cancer... yes, that would be me! Although I have to say I feel like I'm driving on a snowy slippery Michigan road in the dead of winter right now. Have to hang on tight to the steering wheel and hope I don't hit a patch of ice... Soon enough though, I'll be hitting dry smooth pavement and be in control once again :)

Monday, November 3, 2008

Insurace Approval!

Met with Dr. Holmberg today and she let me know Aetna is going to approve the Tandem transplant! Cross this off my worry list... Also found out the cancer isn't in my bone marrow which is good.

So, I'm due to get my first transplant a week from today. I get my chemo this Sunday, come home, hook up to a hydration pump for 24 hours then go to the clinic the next day to get 1/3 of my stem cells back so I can recover. The only worry right now is making sure the Melphalan (first chemo) works. If my cancer happens to progress through the first transplant, I'll get kicked off the trial, not good... That said, I feel confident and hopeful that this first transplant will do what it's supposed to do, kill Hodgkins cells! Like I told Dr. Holmberg, each treatment is getting me closer to remission. It's just taking me longer than most to get there!

The rest of the week I'll be busy getting ready for the transplant. Gonna go to Costco and load up on frozen meals (don't have to worry about food bacteria). Also have to do a deep clean on my place anti-bacterializing (is that a real word?) everything. I'm also looking to get a hepa filter to kill any airborn germs. Kinda scary going into this knowing it's the beginning of flu season, yikes! I just need to be super careful to avoid any situation that will expose me to germs or viruses. Like I said before, I'm just going to turn into a hermit and stay home as much as possible. This is actually the rationalle of SCCA doing transplants on an outpatient basis. My doc says hospitals are where you're going to find the most exotic germs and viruses. So, hopefully I won't get sick and can avoid the hospital. I still will have to go to the clinic everyday for bloodwork and most likely blood transfusions. Realistically however, I know there's a good chance I'll have to be hospitalized at some point for infection (most likely my second transplant) but will worry about that if and when it happens.

I just want to finish by saying how thankful I am that I have this opportunity to fight for a cure. I'm thankful for my former employer Barnes for offering quality health insurance like Aetna. I'm also thankful that I live in America and have a chance to be treated with modern medicine. I'm thankful that I have such a loving and caring girlfriend who has been such a rock for me through these extremely difficult times. I'm thankful that I have such supportive and loving friends and family.

I can't wait to "pay it back" by getting better and God willing being cured...