Thursday, October 26, 2006

Pathology Report

I got my sutures out and the pathology showed Hodgkin's (which is good) especially when they were concerned that it may have moved to Non-Hodgkin's. Neck feels much better with the sutures out. My next plan of action is to get a copy of the slides and path report sent up to the Cleveland Clinic and hopefully get them to set out a game plan for treatment here in my home town. I feel much better knowing it's still Hodgkin's.

I will let you know more of the "game plan" as I call it as soon as I know.


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.

Treatment Begins

Still catching up and it may take several post.

December 7, 2005. My first Chemo at the Cancer Care Center of Indiana here in New Albany, IN. My nurse was Robbie and she was great. Donna came from work to be with me, which was great, and Mom was in the room as well. Room 27 and the chair that they want you to get comfortable in was broke. I got there about 10:00 and left around 2:15. No problems what so ever. They mentioned that I should not take aspirin, refrain from drinking alcohol and refrain from having un-protected sex. I came home and took a nap for about an hour feeling just fine.

DRUGS: Adriamycin, Blenoxane, DTIC or Dacarbazine, and Velban.

My only major complaints I had with all my treatments was some abdominal pain that was left and right of mid-line and the pain (craps) went up and down. Really strange. Also a bad taste in my mouth-metallic taste and certain smells would make me nauseated.

I had treatments on Thursdays and allowed myself 3-4 day recovery period before scanning patients the following week. I really tried to get all my work done that week but still felt fine doing my job. That week was also a blood stick to check my white count and every time it was completely normal (which surprised them all). One of the biggest complaints was being really tired and could not be around anyone smoking. I really feel that I maintained my levels by doing the following: The following Monday I would always get Detoxed. This was a process that through the pours of your feet the soaking method would pull heavy metals and toxins out of your body and the water was just nasty. This was every other day. I would also get laser treatments on my immune system. I will try to find more information out on this laser but I really feel it works. For example: I had a keloid scar from my biopsy and right after the first treatment it was about 50% of what it was. After about seven treatments my scar was not visible. In addition, I would take the following meds:
VITALINE CoQ10 400 mg with 200 IU Vitamin E 1 a day
C-1000 PLUS VITAMIN C 666 mg 2 a day
RECANCOSTAT POWDER Glutathione ½ teaspoon a day
OMEGA-3 FISH OIL SUPPLEMENT 2 teaspoons a day

Feb/06 Repeat PET scan (halfway through treatment) was completely normal! Yahoo!

With such GREAT news, I decided to take a trip to Hawaii just to celebrate with my best friend Keith. We had a great time.

May 6, 2006 was my last Chemo! 12 of 12. CAT scans were completely normal! Yahoo!

To celebrate that my best friend and his wife (Big Mellencamp fans) got front roll seats, yes we were right on the stage-stage left and Keith and I both got to shake his hand and was by far the best concert of all times! We have seen him many, many times before but this was the best!

Sept 23, 2006 I met with Dr. Chowhan and he ordered a repeat PET. He felt like it was going to be normal and hopefully I could get this port out of my chest wall.

Sept 26, 2006 PET showed more cancer, Neck, clavicle and possibly axilla all on the left. Nothing else but this really, really SUCKS!!!!!!!!!!!!

Oct, 2006 CAT scan of my neck confirmed the PET results so now what????

My first post!

A bit of history...I was sitting in my office (June 2005) and noticed a lump above my left clavicle and my first thought was it was a fatty lipoma. Saw my family doctor and he concurred. "Give it a month and if it has not gone away, we will get a CAT scan on it."

A month goes by and I went to see a local general surgeon and he thought it was a lymph node and suggested surgery. Which I know that surgeons get paid to do surgeries, and got a different opinion, SO I went for a third opinion to another surgeon in Louisville, KY. She thought it was a lymph node. Got a CAT scan and it was suggestive of Hodgkin's. She did a biopsy (10/05) and the pathology concurred that it was Nodular Lymphoma-Hodgkin's. She calls me with the results as I'm walking downtown at Harvest Homecoming with my daughter Katie and I just couldn't recall the significance of Hodgkin's but my memory banks was telling me, it was not good. The first person I called was my ex-wife thinking she would know what it was and needless to say I was devastated to hear that I had CANCER!

I went back to see my family doctor (post-op) and he said he did not think that I had cancer that the path report is telling him something else! We had the slides move to our local hospital for a second opinion. This was an emotional roller-coaster I have I not have cancer. I was getting a bit pissed over all this but while getting my initial oncology consult with Dr. Chowhan~Great Guy! he told me that I had Hodgkin's for sure.

I recall still being in denial and he was setting out a plan of treatment and all I could hear was blah blah blah blah...and we can do the bilateral bone marrow taps now if you want! WHAT??
YIKES! I said no way but we rescheduled that for the following week. This was pretty emotional for my Mother and me since I was still leaning that it was not cancer. He said that if anyone was going to have cancer that I had the best cancer you can get! WOW, I said, thanks a lot! Not very happy at that point but he continued to say that it is highly treatable 90-95% recovery rate. That helped to bring me back up a bit but we proceeded in treatment discussion.

4-drugs (Chemo) with 6 months of treatment one treatment every two weeks.
Pre-treatment work up consisted of CAT scan of my neck, chest, abdomen and pelvis. PET scan of my entire body-head to above knees. Pulmonary study and a heart echo. Blood work up etc. Bilateral bone marrow taps. The results of the CT, as I recall showed a cyst on one of my kidneys, Lymph involvement above my left clavicle (which we knew about) measurable lymph axillary’s and that was about it. The PET scan (which shows cancer areas) showed Lt. Clavicle area-a lot of involvement. Right of midline in my abdomen and pelvis. All this consistent with Lymph and didn’t sound to be invading on other structures. Pulmonary was like 98% which I impressed the technician saying no one has done this well in a long time. Echo as I recall them saying was normal as well.

Bone marrow taps were not that bad and they were normal. I had an infussion port placed in my right chest wall under surgery with my local general surgeon.

Now was the time that I had to tell myself that I HAVE CANCER and start dealing with it. All my friends were praying for me. I had the Elders in my church lay hands on me. I read a great book by Lance Armstrong that should be a must for anyone with cancer "It's Not About The Bike" My Mom is just a basket case and is more scared than I am and to some degree I feel a bit strange bringing my Mom with me. It's almost like she has to hold my hand but I can't forget, I will always be her baby.