Wednesday, October 25, 2006


A nurse calls me from the Cancer Care Center and tells me the bad news. Dr. Chowhan said only a small percentage that have my type of cancer, relapse. He said I would need more chemo, radiation to the area and possibly a Bone marrow transplant. I told him I wanted a second opinion mainly because of this:

I got the results (Hard Copy) of the PET scans. The tech agrees with me that he wondered why I was getting another CAT of my neck. He further agrees with me about the uptake that was given to me on 2/26/06. (My normal PET cancer free) They administered 4.56 mCi of F-18 deoxyglucose which I didn’t think was very much and he said no wonder it came back normal that there was not enough to even show my tumors. Looking at the results of my latest PET scan dated 9/24/06 noting the amount admin. 16.45 mCi of F-18 deoxyglucose. This study was abnormal showing uptake of tumors noted to range from 6.7 to 8.0. Thus, this means to me that I was not administered enough that would even show any of my tumors~!!!!

Needless to say I was a little pissed! Further conversation we talked about a wash off effect (When the PET uptake wears off-it washes the area being scanned) making it look like it involves more areas than the actual tumor being scanned. SO, might this area not be so involved??? I think it was about one hour before they scanned and they did my lower abd. first. Re adjusted my arms and scanned my neck last. It took 20-30 minutes to scan my abd./chest/pelvis. So I’m thinking I need to have the PET repeated at Priority Radiology. Can anyone provide me some insight to this problem? Might they have not administered enough uptake? Should I have a repeat PET scan?


Heading to see Dr. Robert Dean on Thursday for my 10/13/06 10:00 am appointment at the Cleveland clinic. I have all my x-rays and the CCC is going to copy my records. We will see how everything goes. I’m starting to feel better about things and I hope he gives me good news. The last thing I want to have is a Bone Marrow Transplant! Research continues to show Radiation not helpful in Hodgkin’s so why would Dr. Chowhan even say that I might needs some treatments???

My appointment with Dr. Dean and Dr. Smith was emotional but very enlightening. I really think it was a good time to get a second opinion. With my Hodgkin’s (Nodular Lymphoma) which is a better form of Hodgkin's which responds to chemo well, which I did. It was completely gone. Sept. PET showed new areas which makes me staged as “Relapsed” Interesting and sadly only 20% of the people do relapse. They found it imperative that the next step in my treatment would to get another surgical excisional biopsy off the left side of my neck. After that chemo, radiation and possible stem cell transplant (SCT) which I was not really wanting. They explained that If I go with chemo and radiation it might stay gone but they gave me a 60% chance that I could relapse again and then I would have to have SCT. After SCT I would have close to a 90% chance that it would never come back but the process is scary and not something I want to do at this point. I’m going to continue to pray that God will eradicate this from my body.

I asked them if I elected to not do anything how long would I have and they would not say but that it would eventually kill me. The SCT process has a 1% chance of death. Like I said a long time ago, “if the cancer doesn’t kill me, the process will.” I had a bad attitude when I said that in the past and it 's like starting all over again (so I guess I have that bad attitude again) but I'm much better about all this since I’ve gone through it. I’ve been reading a Blog of a 41 year-old-female who has the same stuff going on as I do.

All this has just confirmed to me that it is going to be a hard road but I recall what Pastor Tim said, “when you fall, pick weeds” God is in control of all things! We get tripped up, we fall, we should do something while we are down, gather up the weeds. I guess I will just start patching the holes in the road, stay up and fight this one more go around with Chemo and radiation! SCT will be my last resort.


10/20/06 surgery went well at FMH. Dr. Sonne (ENT) said he didn’t think it “looked” bad like non-Hodgkins. He cut two areas one on my neck close to my jaw and the other above my collar-bone close to my first biopsy. We should get the results of the pathology on 10/26/06.

NOW, I think I'm caught up on my history. Should anyone be interested in more details of how I was feeling after each chemo, I can send that to you just let me know.


Unknown said...

Hi there, Alan ~ I'm responding to your lovely comment on my blog. I'm really sorry to hear of your relapse -- it's just not what we wish for, but I remind myself that I knew it could happen to someone, so why not me? I'm strong enough, and so are you. I got my cells back yesterday, so today is Day +1 for me. That probably doesn't mean much for you yet.....nor does it have to now, but it will. I strongly urge you to revisit my blog again and follow one of the many links I share to an absolutely wonderful online message board of Hodgkins survivors at all walks of the journey. We've got newbies, people going through SCT's right now like myself, a bunch of folks who did it and lived to share their experiences with the rest of us, and we've got lots and lots of folks in remission, which just makes you feel good. (One of them for 40 years, and another in his 70's I think!) We've also got a wonderful woman who had her transplant at the Cleveland Clinic, so she could share insight into that facility and its nursing team.

I want you to know that you're in the worst part of it right now. I promise you it will get easier. It probably seems now like your life is turned upside down (it has), like you've lost all control (you've lost a lot but not over your responses and your attitude), and that this thing is never going to end (not true: it will.) All of that is TOTALLY natural, and all part of the process. You just have to break it off into manageable, bite-sized pieces, and trust in the process. Don't get too far ahead of yourself. Get access to the best care (sounds like Cleveland Clinic will be good for you and I know Anne-Marie was pleased with the level of expertise and care) and then put yourself into your doctors' hands. They have your best interests at heart, but make sure you're with an expert bone marrow transplant team. I had to switch teams and hospitals after starting treatment for my relapse and I've never regretted for a moment. I started a "Relapse 101" thread over on the board, maybe I'll copy and paste it over on my blog. You really should check out that group; they're so compassionate and loyal and loving and knowledgeable.....we all get one another and can share openly without having to explain too much, because we've all been there. It helps to have that community and support.

Anyway, it really will get easier. My mantra, in case you didn't catch it on my blog, is, "The way out is through." It just is what it is. This process is unavoidable if you want to live, so you just have to get through it. I decided I was going to do it as positively and openly, and with as much spirit and dignity as I could. Some days are harder than others, but then the next day I wake up again and say, "Today's going to be awesome!" and it usually is.

Don't be a stranger. I'll be thinking of you Alan....and I'll keep you in my prayers. :)

Take care,


Alan said...

Thanks Sarah and blessings to you and Lorraine during this trying time(s). Hope she returns safe and sound and is refreshed over the life that her Grandmother lived!