CAT scan results

I know I've been procrastinating on updating the blog but I can't believe it has been since Sept. 1 that I last posted. Here are the developments since my last post.

I have two doctors one at Akron City Hospital and one at the Cleveland Clinic. I have been using the doctor at the Cleveland Clinic as my "second opinion" doctor and the Akron doctor as my primary oncology doctor. I mainly used the Akron doctor because I wanted to have my chemo treatments closer to home. As of my last post I was to have 8 rounds of chemo. I had an appointment with my Cleveland Clinic doctor to review my latest CAT/PET scan. He told me that where was no evidence that 8 rounds of chemo are more effective that 6 rounds of chemo and he would recommend I only have 6 rounds. Now you would think I would be happy with the news that I would get to skip the last 2 treatments, but now I was in the position to choose with all my vast medical knowledge (sarcasm intended) which was the best option. I decided to only have 6 treatments and my last treatment was on Sept 10th.

During treatments one of the things I held onto was how great I was going to feel after the treatment was finished. Thoughts of exercising again, wrestling with the kids and playing golf. I feel much better than I did during treatment but not close to feeling good. I still have sharp almost constant pain in my stomach. My muscles hurt and I still feel light headed. The chemo has also messed with my vision. My vision should return to normal after 6 months the doctor said. I have been feeling so bad that I was sure the chemo didn't work. I made an appoint to have my CAT scan early and on Dec 2nd I had my CAT scan at 2:30 and an appoint with my doctor at 4:00 that same day.

The rest of this is taken from my wife's email because I'm lazy and she writes better than I do.

The scan showed Bob's chest clear of lymphoma. The tumor in his abdomen (wrapped around his ureter) is still visible but Dr. (Cleveland Clinic) believes it is smaller. He said there is no longer blockage to the kidney. That kidney is noticeably smaller than the other and the doctor said that is probably because of the earlier damage from the blockage. He didn't discuss recovery for the kidney, etc.--didn't seem concerned about it. In looking at the scan, the doctor noted that the inner part of the tumor is darker than the outer ring--possibly suggesting the tissue is necrotic (dead). He said the presence of the tumor could also be only scar tissue that will gradually dissipate. The only way to know definitively if the lymphoma is gone is to do a biopsy. Because of the position of the tumor (in the center of his abdomen with bowel wrapping all around), they cannot do a needle biopsy so would have to do a laparoscopic surgery to do the biopsy. That is not warranted at this time--Bob would not look forward to another one. He said there are 3 possible scenarios:
1. The tumor is necrotic and the cancer is GONE
2. The tumor is still lymphoma but decreased in size
3. The tumor is still lymphoma and has mutated to be a more aggressive type. Dr. says there is NO evidence of this and considers it HIGHLY unlikely.

So....we wait another 3-4 weeks. Why? because Bob is still feeling bad. He has pain and bloating in his stomach and back (in the area where the tumor is/was) He has also had new pain in his calves--he says not the same as the neuropathy pain. He is also still dizzy at times. If Bob was feeling well, we would just assume the cancer is gone and then monitor his progress. If he starts feeling better in the next couple weeks, the scan scheduled for January 8 will be canceled and then a "monitoring" scan will be done in 2-3 months. Dr. said it is not unusual for people to have all the symptoms Bob is having as a residual effect of chemotherapy. Those effects of chemo are usually about 2 months after the last treatment and last 2-3 months.

In the meantime, Bob is taking Protocel 4 times a day and Paw Paw 4 times a day and hasn't seen any side effects (we were hoping for some signs the cancer was being "expelled" from his system). In the research we both read, it can take months for people to see signs and some people never see any--depends on the type of cancer, the severity, etc. So, he'll keep taking them both and hope to scare all those little buggers away since there must be at least 10 million cancer cells in one place in order for them to show up on a scan. Because Protocel is non-toxic, he could take it indefinitely without any negative side effects.

# 5 and PET scan results

Yesterday I had #5 which unfortunately is not my penultimate treatment. Penultimate is one of the few big words I know which means next to last. So I will have eight treatments. The PET scan showed that all the secondary tumors in my arm pits and chest could not be detected. The large tumor around my ureter could still be detected but at a lessor intensity. I asked the doctor if he could give me a percentage of shrinkage. He stated that a PET scan just lights up if it detects cancer and could not get me a percentage of shrinkage. Obviously I'm disappointed that I have to have 8 treatments, but that is what I was expecting. I didn't have much time to talk to my doctor and at the time didn't really have time to process the news. I don't know if I should view the results as negative or if I'm progressing as expected. The doctor did mention other treatments after my chemo is finished but the Akron doctor seems to be more negative than the Cleveland Clinic doctor. I have an appointment with my Cleveland Clinic doctor on the 10th of Sept. and hope to get some my questions answered. I will let you know the outcome of that appointment.

# 4

I just got home from round 4. As usual the treatment was messed up. The infusion center and the doctor's office just don't communicate. I was supposed to have a new nausea medicine with this treatment and the infusion center didn't know anything about it and the doctor didn't call it into the pharmacy. They couldn't get the medicine from the pharmacy before my treatment so I guess I will just have nausea for the next 5 days.

In 2 weeks on the 24th, I will have another PET scan. If they see no cancer on the scans I will still have 2 more treatments for a total of 6. If they see anything I will get 8 treatments. I'm really hoping for the scans to be clean. Mentally each treatment gets harder and harder. Even when I'm feeling good I can't stop thinking about the next treatment.

I'll let you know the results of the scan.

Round 3

Yesterday I had round 3. It is either round 3 of 6 or round 3 of 8. My Cleveland Clinic doctor says I should only have 6 treatments. The Akron General doctor says I will probably have 8 treatements. I will get more scans after my 4th round and another bone biopsy (ouch) I think. After they review the new scans they will determine if I get 6 or 8 treatments. I wish they had just said 8 treatements and then said surprise you only need 6.

I'm trying not to take my anti-nausea this time. It doesn't seem to help and I think it adds to the fogginess in my head. I've been taking ginger pills 3 days before the chemo treatment and until my nausea goes away after my treatment. Ginger pills are the new fad with chemo. All the doctors and nurses are excited about it.

Take care all.

Round 2

On Monday I had my second round of chemo. It was just like the first round except a little shorter because your body is used to the chemo and they administer it faster. I'm not feeling as bad this time as compared to the last treatment. My nausea is there but not horrible, and I don't have as much of the foggy "chemo brain".

I shaved my head yesterday. On Tuesday last week I had some hair on my pillow and I got my hair cut short on Thursday. My hair just thinned more and more Friday through Sunday. But by Monday is was really falling out. So Tuesday morning I got out the razor and shaved it all off. I glad I did. It was very depressing seeing hair on the pillow every morning and all in the shower. The amazing thing is I can't believe how hot i look;-)

So far I going with the Kojak look. It is a great way to scare old ladies and kids. But I need a little sun on the top of my head. It is very white up there right now. Thanks for all your votes.

Chemo week 3

This week has been great. I have lot of energy. My stomach is not upset. I've been eating like a pig! I might even break into the 140 pounds club. So if this is the pattern of one bad week after chemo and then two good weeks I can deal with it.

On the downside there was lots of hair on my pillow this morning. The doctor told me I would lose my hair. But the infusion nurse said I may not. I was resigned to the fact I was going to lose my hair until the nurse gave me hope. I was hoping I would dodge this bullet, but I guess you can't be a "real" chemo patient if you don't lose your hair. I'm going to take a preemptive strike tonight and get my hair buzzed. But after all my hair falls out I have some choices. Please take the survey above to help me choose my new look.

I could go with the natural Kojak look:


The Hulk Hogan doo rag look:


Or the Bret Michaels doo rag plus cowboy hat look:

Chemo week 2

I sure some of you were worried I may have kill myself after the last post. Nope still here ;-) Week 2 has been better, not good, but better. I stopped taking the nausea medicine on Sat. because it wasn't working. By Monday my stomach started feeling better, I don't know if the effect of chemo wore off or the medicine was making me feel bad. The doctor basically told me if I was vomiting then my nausea wasn't that bad!

The fog in my head has also lifted mostly. They told me about "Chemo Brain" which they said I would be forgetful. But I wasn't really forgetful it was just hard to concentrate on anything. I've worked full days starting on Friday. I'm not 100% but I'm getting work accomplished. Trust me when you are programming you need to concentrate. I inserted an example below for those of you who have never seen code.

So I'm hopeful that maybe I'll only have 1 bad week out of every 3. My white blood cells will crash from days 10 to 14 and I'm supposed to be more tired. That hasn't happened yet.

Code to compare 2 files: (This is the simple stuff)

public static void compareFiles(String imdataDir, String imbdatDir) {

BufferedReader brImdata = null;
BufferedReader brImbdata = null;
int fileCnt = 0;

esrExtentions.add(".esr");

try {
File[] fileNames = filesToProcess(imdataDir, esrExtentions);

for (int x = 0; x < fileNames.length; x++) {
File fileImdata = fileNames[x];

fileCnt++;
if (fileCnt % 100 == 0 ) {
System.out.println("Files Processed " + fileCnt);
}

File fileImbdata = getBdataFile(imbdatDir + "\\" + fileImdata.getName());

if (fileImbdata.isFile()) {

boolean isFileDif = false;
int lineCnt = 0;

brImdata = new BufferedReader(new FileReader(fileImdata));
brImbdata = new BufferedReader(new FileReader(fileImbdata));
String lineImdata = null;
String lineImbdata = null;

while ((lineImdata = brImdata.readLine()) != null) {
lineCnt++;
lineImbdata = brImbdata.readLine();
if (lineCnt > 1) {
if (lineImbdata != null) {
if (!lineImdata.equals(lineImbdata)) {
System.out.println("line # " + lineCnt + " " + lineImdata);
System.out.println("line #B " + lineCnt + " " + lineImbdata);
isFileDif = true;
}

} else {
isFileDif = true;
}
}
}
if (brImbdata.readLine() != null) {
isFileDif = true;
}
if (isFileDif) {
System.err.println(" File is different " + fileImdata.getName());
}

brImdata.close();
brImbdata.close();
}

}

} catch (IOException ioe) {
ioe.printStackTrace();
}

}

This is not going to be easy

After the first couple of days of chemo I thought I was going to skate through this without it being too bad. Well I was wrong. My stomach is still very upset. Nothing seems to help it. The doctor changed my medicine but it didn't work. I have an appointment with him on Monday so maybe some other medicine will work. The only thing that seems to help is lying down.

The worst thing about this is my head is in a fog. I can't concentrate to read or even watch TV. So I feel like I wandering around doing nothing all day, just waiting until it is time to sleep.

Sorry for the downer of a post, but I said I wasn't going to sugar coat it. Hopefully the next two weeks will be better.

Chemo Day 2

Well I made it to work today, but only for half a day. I was very tired and came home and took a nap after lunch. My stomach is very upset. I'm going to try to get a different nausea medicine for tomorrow.

On to tomorrow.

Chemo Day 1

Warning if you don't really want to know how chemo effects you stop reading now.

I'm not going to sugar coat it, but today was good.

I arrived at the infusion center at 8:00 AM. They gave me a little tour of the place. Where the food and drinks was stored (because I trying not to eat any sugar I can't eat 90% of it). The bathroom, the nurses station, etc. They then sat Bridget and I down and gave us a bunch of material to read over about chemo and explained the procedure.

Then we started. My chemo is called R-CHOP. First they administered Rituximab.

Rituximab (Mabthera®) belongs to a group of drugs known as monoclonal antibodies. It is used to treat several different types of B-cell non-Hodgkin lymphoma.

Monoclonal antibodies are used to try to destroy some types of cancer cells, while causing little harm to normal cells. They are designed to recognise certain proteins that are found on the surface of some cancer cells. The monoclonal antibody recognises the protein and locks onto it (like a key in a lock). This may then trigger the body’s immune system to attack the cancer cells and can sometimes make the cells destroy themselves

They start with a low dosage of the drug at first and then slowly increase the amount every 30 minutes. After the 3rd round my throat started feeling very sore and my nose started running. They stopped the treatment and gave me some hydrocortisone which lessened the soreness in my throat. Then the treatment was started again. It lasted until 2:00 PM.

Next I was given a anti-nausea medicine through the IV, sorry don't remember the name. It took about 30 minutes.

Next I was give Doxorubicin which is a chemo drug that is a red fluid injected in a big syringe. I had to suck on ice chips to constrict the blood vessels in my mouth to reduce the chance of mouth sores. This only took about 5 minutes.

Finally I was given Cyclophosphamide through the IV. This took about 30 minutes and I was all finished.

I have to take prednisolone, which is a steroid in pill form over the next 5 days. This revs up your immune system (the nurses words) and told me I would be very tired after I stoppled taking it.

OK, but how do you feel. Well the whole thing was pretty anticlimactic. I'm tired and my port site hurts and I have a headache, but not too bad. I had a lot of anxiety about what to expect which made it worse. As the drugs were going into me I kept waiting to feel bad. We will see what tomorrow brings and I will let you know about it.

My chair:


My view and TV:

Port

I had the port put in this morning. The surgery was a little more involved than I anticipated. It took about 45 minutes. It is now 3 hours after the surgery and I'm in a little pain but nothing too bad.

Wikipedia defines a port this way:
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin.. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.


This is what they put in me.




It was inserted in the upper right part of my chest.



Update:

I woke up this morning and the site where the port was put in is very stiff. It hurts to raise my arm over my shoulder. I will have to ask the doctor why she put the port in the right side since I'm right handed.

Mulch Party

Bridget and I debated how to get the mulch spread this year, since I couldn't help. I was going to hire somebody to do it, but Bridget didn't want to hire somebody who would do it quickly and bury her flowers. So many people have offered to help us in any way possible. Bridget sent out an email to ask for help with the mulch and the response overwhelmed us. We got 6 yards of mulch spread in an hour. Jim and Maria who couldn't be here stopped by yesterday and dropped off refreshments. Thanks to everybody who helped!


The Crew

How did I get here?

On February 22, 2007, my birthday, I was sitting down to watch TV. I had just been to the gym where I ran and lifted weights. The weekend before I was snow boarding with the family. I started feeling a tingling in my feet. Like they were asleep but it was different because it felt like nails were being driven into my toes. I didn't think much of it and went to bed. The next morning I woke up and the pain was still there. I went to work and now the tingling and pain started in my hands. I saw my doctor the next day. They did standard blood work and saw that my thyroid was under active (hypothyroidism is the fancy medical term). They put me on medicine and told me the symptoms should go away in about 6 weeks. Well it didn't. Over the next year and a half I saw too many doctors who could only confirm that I had a severe, length dependent, small fiber sensory neuropathy. But they couldn't find a cause. I gave up at that point.

Now my stomach had been giving me so much trouble that I went to see a GI doctor. He performed an Upper GI Endoscopy (camera down your throat) and said everything looked fine. But it wasn't fine. I had no appetite and eating became utilitarian. He gave me a bunch of medicines, but nothing helped. I gave up again.

Fast forward to November of 2008. In addition to the neuropathy and stomach pains my lower back hurt so much it was waking me up at night. My wife suggested I see an Osteopathic doctor to manipulate my back. He cracked and popped my back and said I should be feeling better now. Of course I wasn't. He told me the pain must be internal. He asked who was my primary care doctor. I told him and he said that they were roommates in college. He told me he was going to call him that night and tell him to do a CAT scan on me. Well he actually called him!

My primary care doctor ordered a CAT scan that showed I had a blockage in my left ureter.





Off to the the urologist. The urologist put a scope up my manhood (sorry for that image guys) and cleared the blockage and put in a stent (a long and I mean long 18 inch tube). That was the most painful week of my life until I made him take the stent out. The urologist ordered another more detailed CAT (why didn't they do a detailed one in the first place?). This time the CAT showed the dreaded mass around my ureter. So that scope up my manhood was all for nothing! Off to surgery with me.

The surgeon did a exploratory laporoscopy of my abdomen. Basically put 6 small holes in me and blew my abdomen up with gas. I joked with the kids that they had to tie me down or I would have floated to the ceiling like a balloon. She did a biopsy of the mass which was of course cancer if you haven't been paying attention. Off to the oncologist.


My oncologist, who looks so young I wouldn't serve him a drink, ordered yet another CAT scan, a PET scan (fancy cancer scan) and a bone biopsy. Now I'm waiting to have a port put in my chest (June 5) to administer the chemo(June 8).

Well you are all caught up now. Sorry for the long post. More posts of future procedures, hopefully with pictures!

You have cancer

Not the words anybody wants to hear. You really don't want to be told those words by a surgeon who can't give you any information, because it is not her speciality. Then have to wait 2 weeks to see the oncoligist.

OK why would a guy who can't spell kat and who was once told by a college English professor, after reviewing a paper, that "Maybe college isn't for you" write a blog? Well I'm writing it for me. After going to many doctors and answering the same questions over and over I decided to write up a medical history of dates, doctors, symptoms, etc. I found that process therapeutic. Once it was written down I could focus on other things. Hopefully this blog will have the same effect on me as I battle cancer. Also I have received so much support from my family and friends and from people who I didn't think really liked me, that I feel I owe you a window into my progress.