Friday, October 24, 2008

Full Steam Ahead!!

Met with Dr. Holmberg today and got some good news! The GVD has further shrunk my cancer to the point where I now only have "mild residual disease". It's not perfect (remission would be ideal) but it's good enough for me to enter into the tandem auto stem cell transplant trial which offers me roughly a 20% additional chance of a cure. Like I've said all along, anything that helps me toward a cure I'm all for...

So, from here, I can relax for a couple of weeks (now that I have my bone marrow biopsy out of the way). My Dad and my Stepmom are coming out the 31st for a long weekend visit where I'm going to belatedly help him celebrate his 60th birthday, yee haw! If the weather is nice, we're going to attempt to play this beautiful golf course, Chambers Bay which is right on Puget Sound and future host to PGA tour events. Who knows, maybe we'll even go out for Halloween!

After that, it's down and dirty again with the first transplant starting 1st week of November. It's scary as SCT regimen's carry a 6-8% mortality rate. I have to be really careful of infections (germs, viruses, etc...) as my immune system is going to be totally wiped out TWICE. This means obsessive hand washing, careful food preparation (most likely lots of microwave dinners), avoiding crowds, etc... Basically, I'm going to be a hermit for the next few months. Good thing I just signed up with Direct TV and have all the movie channels. I also think I'm going to get the NBA pass so I can keep up with my Pistons. I've recently taken up painting so that should keep me busy too. I just need to get through this without getting any infections because if I do, it means isolation in the hospital. The SCCA is one of the few institutions that do SCT's outpatient and if possible, I'd like to keep it that way as I can't stand hospitals.

Anyway, I'm sure I'll have more thoughts on this later, I'm just thankful and grateful that I have a chance to do the tandem transplant. Thank you God!

Sunday, October 19, 2008

Next Steps...

Well, Jackie and I met with my transplant Doctor on Friday (Dr. Holmberg) and she laid out a roadmap (rough) for the upcoming weeks. I have to say, she seems to be a great doctor, probably the best I've had so far so that's good!

I have a myriad of tests the next couple of weeks some of which I've already completed like EKG, dental, physical, etc... This Wednesday is a big one and that is my restaging PET scan. This is going to determine whether I enter into the SWOG study for a tandem Auto Transplant. She said that if my disease has shrunk >50% then we can proceed with the tandem (pending insurance approval). If I still have more than 50% of disease prior to me starting GVD chemo, were just going to do the one transplant. She's worried that if I still have greater than 50% residual disease there's a chance my cancer could grow through the first transplant as it's a reduced intensity transplant with one conditioning regimen. In other words, if the cancer grows throught the first transplant, they have to pull me from the second transplant. This wouldn't be good because the second transplant is the one that really packs a punch and offers the chance of a cure. So to sum up, a perfect scenario would see me in remission after the PET (or >50% reduction), a tandem transplant would be scheduled where they would first give me single dose Melphalan chemo and then 1/3 of my stem cells back. I would then recover for 4-8 weeks then get my second transplant which would consist of conditioning chemo Cytoxan and VP-16 with 5 days of total body irradiation 2x per day. I would then get the rest of my stem cells back and recover for 6-10 weeks.

After the PET scan on Wednesday, I have a bone marrow biopsy scheduled for Friday morning. For this procedure, they take a 6" needle and penetrate both of my hips extracting bone marrow to be analyzed to see if the cancer has spread to my marrow (not fun). This will be the third time I've had to get one of these! So far, the first two times the test has been negative thank God.

So, I'm hoping for a good week of tests and looking to start some type of SCT first of November. I feel like I'm getting ready to deploy to Iraq or Afghanistan, pretty crazy...

With all of this said, I feel fairly relaxed and think I'm ready. The good thing is that no matter what, after all of this, I'm done with chemo! Like I said before, I have a good feeling things are going to work out :) In a way, they already have...

Wednesday, October 15, 2008

Last GVD!

Well, here I am again in front of the laptop... Just watching the recap of the debates after watching most of the actual debate at the clinic while receiving chemo. Hard to believe the election is in 3 weeks! I'm completely stuffed as I've been trying to gain some weight after my almost 2 weeks without eating. I stepped onto the scale today and noticed I've lost about 10-12 pounds... Kinda scary. I get so full now so easily as I think my stomach has shrunk. I need to gain this weight back because I know I'm going to be in the same situation (not being able to eat) once I enter SCT. Easier said than done dealing with nausea and residual mouth sores. Just another hurdle on my journey...

I wanted to share something good that happened to me that could have been pretty bad. I was on my way to the Comcast office to drop off my old cable box as I've recently switched to Direct TV. Here in Seattle there are some serious steep hills in certain neighborhoods and Jackie happens to live on top of one of them (Queen Anne). So, I had to progress down the hill to get to the main route. Having chemo brain, I forgot to bring my wallet with me and also failed to fasten my seatbelt (dumb move I know). I was halfway down the hill and because of the steepness of the hill (that's my excuse and I'm sticking to it) I failed to come to a complete stop at a stop sign. Of course, a police officer was parked right at the cross street! We made eye contact, she told me to roll down my window and told me to pull over so "we could talk". She walked over and asked for my license and I told her I didn't have it. She then asked me why I didn't have my license and I told her I was in treatment and had chemo brain. She then went into a tirade about how she doesn't feel safe with me driving, how I should find a driver and basically stay off the road! She then went to her car after I produced an expired proof of insurance and expired drivers license which I had in my glove box. Yikes! I waited and waited as 10 minutes went by... She then came to the car and asked me for my social security # as she had a Chris Carr in the system that was a wanted fugitive felon!! Things are going very wrong... I gave it to her and sat in my car for another 15 minutes now very nervous and very scared that she was going to mistake my identity and "throw the book at me". I envisioned her cuffing and stuffing me and bringing me down to the station for instense questioning... Mind you, I had my final infusion in just another half an hour. She finally came back with what looked like a ticket and I braced myself. She then went on to say (to my delight) that she undertood I had enough on my plate and was just going to issue me a warning! She then went on to tell me she has two colleagues that are currently going through stem cell transplant and she knows what I'm going through. We went on to have a great conversation about some of her other friends who have made it through bleak circumstances and we had a real spiritual connection. We ended up exchanging contact information and can truly say I made a friend! I couldn't believe it and was overwhelmed by emotion as I drove off... I think I have a Guardian Angel looking after me and thank God for it!

So where do I go from here? First, I'm going to make sure and always have my license and seat belt fastened while driving... :-D Seriously, I meet with my transplant team tomorrow for my prelim physical. I hopefully will find out when my re-staging PET scan is and an outline for subsequent treatment, i.e. SCT.

So long GVD! I've now conquered You, ABVD and ICE. I'm a little wounded but still very strong in mind and body and ready for the next phase in my quest for a cure!

P.S. Just wanted to send good vibes to my friend Bekah who is having a hard time with side effects on an experimental drug Also, wanted to send prayers to a guy named Mike in St. Clair Shores who has been battling Hodgkins for a while and is in constant excruciating pain that no pain med has been able to offer relief. The only thing that will work for him is a epidural but the doc's are afraid to do so as he is so immunosuppressed and they're afraid of infection. I truly hope they can find a way for him to get this so he can be in peace.

More to come...

Sunday, October 12, 2008

One Day At a Time!

Well, it's Sunday evening and Jackie and I are sitting here in her living room mindlessly fidgeting with our laptops... Chili is over in the corner snoozing... All seems to be pretty normal.

It is possible to forget about cancer for a while, although those moments unfortunately don't seem to last very long. I am increasingly getting more and more anxious about my impending stem cell transplant and need to figure out a way to keep calm about it. I've done tons of research on the web and through my forums regarding personal experiences and think I have a pretty good handle on what to expect. No matter how I slice it, it's going to be tough. I'm just now getting a little taste of what it's going to be like with the bout with Mucositis, rash, etc... In fact, the only thing that I haven't experienced is the extreme naseau and vomiting. I guess I haven't experienced it from chemo but have been extremely sea sick before and guess it couldn't be much different from that right?

I think the hardest part about all of this is the possibility of this (SCT) not working. Don't get me wrong, I am confident and truly think I have a great shot at this working but it is natural and normal for the tiny seeds of doubt to creep in every once and a while. What a waste to have to go through all of this crap and have it not work right?! That's why I'm thinking there has to be a reason why I'm going through all this (side effects now and upcoming) and that reason is a CURE!

I'm so excited to think about life post cancer... I know it's going to be a long road to recovery (I've read anywhere from 6 months to 3 years!) but it's going to be totally worth it.

Until then, I'm just doing my best to enjoy all the simple pleasures in life when I can. Simple things right now like being able to chew and swallow food, brush my teeth, talk and walk make me very happy! My message (to myself) here is to be conscious and mindful of everyting I do and try and appreciate it the best I can!

Happy Monday Everyone!

Wednesday, October 8, 2008

GND Back On!

Well, after a lot of thought, I've decided that I'm going to go ahead and do another cycle of GND. Because of all the toxicity that I experienced with this last round, my Oncologist said that he didn't think I should do it and go straight to SCT. I originally agreed as I've been pretty miserable but changed my mind after sleeping on it. My rationale is I've only got one chance to get this right (SCT). The closer I am to remission (or in remission) before SCT the better the odds of a cure. I figure I can put up with another couple weeks of hell for the chance at the big prize of a CURE!

So, time to go into warrior mode once again...

Tuesday, October 7, 2008

Feeling Better!

Finally starting to feel better! My throat, mouth and rash are starting to fade, thank God! The more I think about it, the better I feel about scrapping the last round of chemo and going into SCT.

I plan to meet with my new team next Thursday to map out a strategy. I meet with my regular Onc. tomorrow and will try and probe her for some questions to ask.

As for me, now that the side effects from the chemo are going away, I can honestly say this is the best I've felt physically in a long time. I no longer have the "pleural rub" which was bothering me for quite some time. I no longer have back pain in the evening which was going on for longer than I can remember. In addition, I don't have as much pain in my chest and can take in a deeper breath it seems. All in all, I think the GVD did a job on the tumors which is a good thing. How much remains to be seen once I get a PET scan. Overall, I'm confident that I'm in much better shape heading into SCT than I would have been if I'd have gone in after the ICE chemo.

So, from here, it's in the Lord's and my doctors hands! I of course will continue to do everything I can to help facilitate a successful transplant and subsequent cancer free recovery.

Bring it on!

Monday, October 6, 2008

Scrapping the last round of GND

Well, part of me is relieved and part of me upset. It's been decided that because of the recent severe side effects that I'm going to skip another round of GND and go right into SCT/s.

Apparantly the cumulative toxicity of being on 3 chemo regimens over the last 11 months is starting to take a toll on my body and immune system. For this reason, my doc's have decided to move me into preparations for SCT/s. The rationale is I'm going to be getting hit with such high doses of conditioning chemo prior to being reinfused with my stem cells that my body needs time to rest before this happens. My doc told me that the side effects I'm having right now are very likely to come back as bad if not worse with the next round of chemo. I can't imagine how it could be worse... On the bright side, at least I've been through it and can mentally prepare. I also will be more diligent in mouth care to hopefully prevent such severe mucositis and will know what types of topical agents to use if I get any rashes. Not to mention, I won't try and "tough it out" forgoing pain meds as long as possible and will be proactive in taking them as soon as I feel any kind of pain coming on.

As I lay here on my couch, I realize how incredibly surreal this whole situation is (at least that's how it feels). I'm getting ready to be "reborn" by wiping out my immune system and starting over. These next few weeks and months are going to determine if I live a full life or potentially not make it to my 40th birthday. I guess you can say my life is flashing before my eyes. Remarkably, I feel very calm despite the weight of the situation. I'm sure that'll change as I start going through the process again of being restaged (bone marrow biopsy, PET scan, spinal tap), receiving the chemo and total body irradiation, getting my stem cells back, waiting for my stem cells to "engraft" etc...

No matter what happens, I'll never be the same again I'm sure of that. How can one go through such an epic event and not be changed? If I can conquer this, there's nothing in life that I won't be able to conquer. If I can survive this challenge, there's no challenge in life that I can't overcome. I know this sounds cliche but it's the truth. In a way, I feel blessed that I'm getting a chance to experience this because of the reasons I mentioned. Once I get through this, the world is my Oyster!!

I'll have more details on the nuts and bolts of what's going to happen once I find them out. I still don't know if I'm going to have one or two transplants. I guess it depends on the re-staging PET scan and insurance acceptance (two transplants are still considered experimental by the insurance companies even though the preliminary data is very encouraging). Regarding the restaging PET scan, if I still have active or progressive cancer, they may not want to give two transplants as the first one is considered a "mini" transplant and reduced levels of chemo (Melphalan) are used. The rationale for scrapping this is the cancer could grow further while the transplant is done putting me in a worse situation. However, if the PET is clean, I would think they'd want to do the tandem. It's all speculation at this point and like I said, as soon as I know, I'll pass along the news.

Thanks to everyone who has reached out to me with support! It means the world to me and keeps me going through this tough time.

Saturday, October 4, 2008


Don't mean to sound like a downer but I need to vent here... I've pretty much been out of commission for the past week plus dealing with a severe case of mucositis and a nasty scrotal rash. Things I took for granted like eating, talking, swallowing, walking etc. have been extremely difficult lately! Everyone told me that this chemo (GND) was supposed to be so mild and well tolerated... It's been anything but for me. I'm thinking it's probably because my body has become so immunosuppressed from successive chemo's and needs a break. That said, I have one more cycle of this stuff scheduled for next Wednesday (if things clear up) then moving on to stem cell transplant. I'm concerned because the chemo used for the SCT is known to be much harsher and more likely to cause severe side effects. You know what they say though, one day at a time...

For anyone out there that has to deal with chronic acute pain on a daily basis, (i.e. rheumatoid arthritis, shingles, etc...) I tip my hat to you. I remember when my Unlcle Rob was sick and going over to visit and noticing how irritable he was (God I wish I could talk to him right now). When you're constantly in pain, you can't function as a normal human being. Thank God I have pain meds and topical numbing agents for my mouth (they call it Magic Mouthwash!).

I received two units of Red Blood Cells today (RBC's). I already notice a slight difference in my energy level and hope it'll facilitate healing in the other areas of my body.

Thanks for reading by bitch session and sorry for not updating for a while. Despite my negative tone right now, I am so thankful and grateful to be alive! I dream about the day when all of this is just going to be a bad memory. A year or two from now, the only way I'll remember this is by looking back and reading my posts.

God has a way of helping us selectively forget about the painful experiences in our life...