Getting Back to Normal

Whew...

I was hospitalized for 6 days and have been home now for over a week. I have been recovering still and have had an at-home nurse come in three times to administer m0re fluids.

It was determined that the cause of this was a reaction to the chemo. I guess the toxicity of the chemo grew to a high level in my system and my body decided it had enough.

At the height of this dehydration, I weighed only 118 Lbs. A week and 1/2 later, I've already gained 10 lbs back.

Feeling much better, my appetite has returned, and a lot of my energy has returned too.

Now I am feeling like creating some new music.

Resting up and drinking chicken soup today.  On Tuesday I will meet with my 

Oncologist to be evaluated.  At that point I will find out whether they recommend a 12th round of chemo, or if it is too toxic.

Bump in the road

Like all things, sometimes there are bumps in the road that must be dealt with. I practically sailed through the first 10 rounds of chemo (they say), but it didnt work that way for the 11th. -So close to the end -

But I am writing to you in the hospital now. Somehow yet to be determined... I either caught a bug, took too many antibiotics, or from the chemo itself, my GI tract had a reversal of fortune, and over the course of 10 days, I became extremely dehydrated. and worn out and weak. I have not really eaten anything in 5 days because I couldnt keep it in me. Kinda gross to talk about, but somewhat typical of chemo. I lost almost 20 lbs in 2 weeks.

This sudden change of events scared me and I went into the Onc office two days in a row to get fluids - 3 liters in all, but it wasnt enough. So they told me to check into the hospital. Im in the hopsital now getting fluids and they are doing some tests to rule out what this is exactly and get me back on my feet. I only had one round of chemo left after this and want to get it too. But there is talk that they might end it now. Or really lower the dose.

The good news is that my stomach is finally settling down and eventhough the real test will be when I can eat something and everything is fine, but I feel good about things now.
I should be out of here in a dayh or two

the computer im using at the hospital _ the keyboard really sux so please excuse the typos and i will fix er up as soon as im fixed up>

more later

YAY -

Just a quick note to say that I have only 2 big treatments left now. Should be done by the beginning of February.

Acupuncture

(So you guessed it - I got a stunt double, a Gibbon, if you will, to pose for an acupuncture photo.)

Today is a little over 4 days since the start of my 8th round of chemo. I'm starting to bounce back from it, although we had our first big snow storm here and now the neuropathy occurs more often and more easily rears its head. The cold snow on the ground gives me painful tingling in the feet. Bad noooze. But liveable - for 8 more weeks.
Luckily I am getting acupuncture on my hands and feet to counter its total effects.

Acupuncture is a medical treatment that is 5000 years old.

For many weeks now I have been going to see Dr. Lee, a Doctor of Chinese Medicine, to treat the neuropathy that usually accompanies the chemo that I'm on. The Oxaliplatin causes extreme tingling in the hands and feet, and also causes an extreme pain reaction to cold temperatures. There are days when I don't want go into the refrigerator to get anything because it is too cold. Luckily, the acupuncture makes this reaction short-lived and temporary. (There are many reports of this neuropathy setting in and lasting for an undetermined number of months and even years after chemo ends. That fear has been a big issue for me all along.) I get the neuropathy for minutes at a time, or only when touching something cold, but only during the week of chemo. Other than that it goes away. And I hope it stays away.

Let me tell you, yes that is my hand. If you have never done it before, the needles don't hurt at all. And I usually fall asleep or at least into a relaxed state when they are applied. They stay in for 30 minutes at a time and I only go once a week. But it works.

Other acupuncture that I have done at the same time has alternated between different points on my neck and head, for a boost to my immune system when needed, or the stomach, for an increase in energy. Some of the points are for the liver as well (Those points are located on my feet and called Liver 3.) I had some needles in my knees once which promote circulation.

There is much to say about the theory and science behind acupuncture. I learned a little about it. This much I know just from reading here and there... It has been shown to be beneficial for many ailments. How it works however is not entirely known. Basically the needles act as a stimulus to influence physiological functioning of the body. There is an energy flowing throughout the body called Qi. When the flow of this energy is blocked, insufficient, or otherwise suppressed, then illness can occur. Qi travels throughout the body in channels, and at specific points, these channels come up to the surface of the skin, where acupuncture needles can access them. The acupuncture restores the flow.

Acupuncture raises various hormones and white blood cell counts, although it is not known how this occurs. It is also known to successfully treat a variety of diseases, illness, and injury. So far it has worked for me and the neuropathy that is associated with Oxaliplatin.

Dr Lee is at Chinese Healing Art, 1854 Clavey Rd, Highland Park, IL. Tel: 847-831-1609.

Happy Thanksgiving!

First off- some good news about Erbitux. It seems that it is proving to be more effective than first expected: Read this


What more can I tell you now?

I dont know. This is the middle of treatments and things are either going to stay the same or they will get worse. When I say worse, I mean, I could be a little more tired as things go on, and have some more side effects to deal with, etc..

One good piece of news I can tell you is that my CEA score, which is a blood test that is used to measure cancer activity, is improved. Although this is debatable as I will explain. A normal CEA level can be between 0 and 5. For smokers, that number can be between 0 and 10. And things are still considered normal. My Original CEA score pre-surgery, was 2. Now midway thru chemo, it is 0.8. So it is an improvement, however, these scores are already considered within the normal range.

The truth is that the CEA can be used as an indicator, and some people show scores of 50 or 100 or even higher, but not all people produce a lot of CEA and therefore, you cant really tell when that is the case. Having a tumor, yet having a score of 2, means it isnt a reliable marker for me, yet having it drop to 0.8 is an improvement of sorts. So lets celebrate.

Other news?

Well it looks like my last day of chemo will be February 1st. That is basically 2 months from now. Sounds like a long time but it will be here before ya know it.

In the meantime I am still doing pretty good. Still working, still working out, still doing Yoga, and also working on music too. I must admit though, a few nights a week I enjoy crashing early-- err.. I mean "resting."

Interesting, I never realized this new word that has crept into conversations moreso these days.. the word "rest" or "Im resting"

Q: "What are you doing?"
A: "I'm resting..."

I never used to hear that word or use it even.. Now it seems funny to say that "on Friday night, I stayed in and rested." Resting. what a concept... Its a verb? I can't believe it..

For the moment, Im just "Slouching and Couching" -- There, you like that?

...come February.. no more resting..

HALF WAY DONE - and a recap...

Im getting my sixth round of chemo right now. Im officially halfway done with the treatments. Im excited... its all downhill from here (knock on wood)

Just to recap and fill in some blanks, here is whats happening..

In the middle of June, I went to an outdoor Doobie Brothers Concert, then two days later the results of a colonoscopy came back and I was diagnosed with Colon Cancer..

While still in shock and disbelief, I immediately emailed my friend Shyam, who is a surgeon with the US Navy, but he was in Iraq saving lives at the time. He helped me by answering my many questions via email and setting me at ease.

I got some scans done and it showed a small 3cm mass in the wall of my colon which appeared to be a Stage I tumor, which is good.

Following that, I met with several surgeons to see what my options were. One was at University of Chicago, and another was at Northwestern Memorial, the top two hospitals in the area.

I went with Dr. Steven Stryker, because he had the most experience and also felt very comfortable doing the surgery as a "Laparoscopically Assisted" procedure which meant smaller incisions and faster recovery time. He actually wrote a very important paper comparing Laparoscopic vs Open Surgery some time ago showing that the two are equally safe procedures.(Here is an abstract on it)The surgery went very well and already my scars from the incisions are fading.

Next I researched on my own, and started on a regimen of alternative medicines including ACHH, to raise the immune system, and Avemar, a substance shown to regulate the white blood cells and fight cancer.

I had surgery on July 12th. A few says later, the pathology report came back showing that this tumor skipped over stage II, and went straight to stage III; 4 out of 21 lymph nodes harvested from surgery contained stray cancer cells. Strong chemo would be necessary.

I had another small outpatient surgery to implant a port in my chest. Basically it looks like this . It rests under the skin below my collar bone and the tube feeds directly into a main artery that goes to the heart. I dont even feel it and all you would see is a slight lump under my skin. It is used as a way to give me chemo rather than constantly pricking a vein in my arm to connect an IV. After these treatments are all done, after a few months to make sure everything is allright, there will be another short surgery to remove it.

Who will be giving me chemo? I again investigated several options. Northwestern's Robert Lurie Cancer Center was one, a local option was another, and another Oncology group located across the street from Northwestern was a third option. After doing my homework, and individually meeting with several Oncologists, I chose Dr John Shaw at Hematology Oncology Associates of Illinois. He came highly recommended and also we seemed to get along the best.

He put me on FOLFOX which is the first-line chemo for Colon Cancer. FOLFOX is an acronym for three drugs. (Folonic Acid, also known as Leucovorin, 5-FU or Fluorouracil, and Oxaliplatin, also called Oxaliplatinum.)

In addition, I got into a Clinical Trial for Erbitux, a very new kind of chemo drug that attacks cancer cells based on a protein that exists on the outer cell wall. This protein is also found in skin cells so it provides a nice rash on my face. Because Im in the study, I was assigned a special Chemo-Dermatologist at Northwestern to basically thwart off skin problems that can develop, so that I will be able to take Erbitux non-stop for the entire length of the treatment. More on this in a future post.

OK.

In addition, I continued biking and rode over 400 miles this summer. Half of that time I was on chemo. Now its too cold to bike so I have to find something else to do. In the interim I have started sleeping more - as in 13 hour stretches. Its obvious that exercise makes a difference, so its time to get moving doing some aerobic exercise.

On Sundays I have been lifting weights with my cousin Daryl, at City Wide Super Slow in order to gain muscle mass and come out of this looking and feeling better than I did before. I have to say that my muscles are looking pretty good these days all things considered... (A more detailed post to follow on this)

Finally, I have also been attending a yoga class on Wednesdays which has been really great for having a peaceful mind, and stretching my body to keep it in shape.

Its all helping.

On top of it, I really appreciate my friends, relatives, and co-workers for being so supportive throughout this ordeal. This is the kind of thing where I could easily feel disconnected and isolated from people in general, but that has not been the case, in fact I feel more of a connection than before, to the people who are close to me, as well as people in general.

New Research shows stronger link to diet and cancers..

Here is a quickie:

Check out this article.

http://news.yahoo.com/s/nm/20071031/hl_nm/cancer_obesity_dc

Looks like there is a stronger link to diet than first thought...

PS: I am overall doing fine and will be soon starting my 6th treatement. (The half-way mark)

Round 4, 5...

Greetings,

Well I didnt post anything after my Fourth round and now we are almost done with the 5th round.

Between the two, my brother got married and I was the Best Man. In order to make sure the weekend was great, I postphoned my chemo treatment till the following Monday. Yes, this can be done.

It was a somewhat busy week leading up to the wedding, although that was a "recovery week" and my energy grew. The wedding was really 3 days if you count the Rehearsal Dinner, wedding day with pictures, and Sunday brunch and recouping.

Then Monday I had treatment. That has been a test of strength so far. I went to work on Wednesday, and half of Thursday. Tomorrow I get the Erbutix. I havent really started bouncing back from the Folfox yet. This should be interesting. In the meantime a blood test came back showing that my liver enzymes are elevated due to the chemo. Not dangerously high, but enough to warrant further monitoring. (AST 63) (ALT 152).

On the upside, I have been gaining weight. A few pounds here and there. Been eating a lot actually but it adds up to only a couple of pounds over a 2 week period. Small but good news.

In general, everything is upbeat and optimistic. Im a little more tired for a day or two longer. After the 6th round, things will probably stay the same thru the end. That will be 12-14 weeks from now.

I also am working on a new project for a CD. More on that later. But it is something that I cant wait to tell you about - it will be very good.

What is causing that rash on my face - Erbitux

This is me and my good friend Jennifer at our high school reunion last weekend.

If you have seen me lately you must have noticed that my face is broken out like a teenage boy with acne. That is due to one of the drugs that I'm on called Erbitux.

Erbitux is one drug in a new class of Chemo drugs, called monoclonal antibodies, These drugs are much more targeted therapies than conventional chemo. Erbitux recognizes a certain receptor on cancer cells called EGRF (Epidermal Growth Receptor Factor) and attaches to it. The receptor is responsible for cell growth. The drug clogs the receptor and causes the cells to die. Unfortunately, EGRF is also found in the Epidermis, or the very top layer of skin cells, especially the ones on the head and shoulders because this area of the skin takes a lot of daily wear and tear, and therefore grows / replenishes itself at a faster rate.

Erbitux also gets to the cuticles of the fingernails because these contain skin cells that grow quick too. Therefore if you ever bit or picked at your cuticles, you can imagine the possible results.

This is all a small price to pay, and after treatment ends everything goes back to normal. Its not perfect, but it is an advancement in chemo.

Because it is so new, Erbitux is available to me only by participating in a clinical trial. I was assigned a special Chemo-dermatologist at Northwestern who only sees patients on Erbitux, to monitor what is happening. There are some more drugs to take to help make the rash go away.. somewhat. They say that since I have a healthy rash, that means I am a good responder to Erbitux and it should be working well.

More info on Erbitux

Finally here is a claim to fame, and another reason to feel good being on Erbitux. If you have been following the news lately regarding the world-famous 33-year old Chicago Chef, Grant Achatz, who has tongue cancer. He refused to have surgery because it would end his career. He is currently undergoing chemo and is on Erbitux, and has shown a lot of improvement.

Check these links out:

Grant Achatz

Despite Setback, Achatz Upbeat

Update: More good news on Grant Achatz

Chemo - round 3 done.. thoughts

Round Three was a slight bit more intense- well really it just seemed to hang around for a day longer than before. The "mono-like" fatigue was more apparent, and there were moments where I was in a bad mood, but I just followed the light at the end of the tunnel and it eventually all went away after a few days. Nausea has not been a significant problem at all thanks to Kytril, but my earlier noted digestive problems came back right on schedule. I pretty much know the routine now.

Friday I had my treatment and on Sunday I was lifting weights - and made some gains in weight but went down in reps. Endurance and fatigue are the main issues and I took more naps this week as needed. Went for walks around the neighborhood and by Thursday I was on the mountain bike doing 12 miles again.

As far as the Neuropathy, the tingling and cold sensitivity were present, and I was alarmed on two occasions when I also experienced motor neuropathy in my right hand when I would handle keys. I'd go to pick up a set of keys and put a key into the door, and just holding my fingers that way was painful. Like a cramp in the hand or like my hand had jaundice, my hand would not follow my commands. I dropped the keys and slapped my hand flat to relieve the pain. These two instances lasted only a few minutes. I took some potassium and it seemed to help. My oncology nurse Shannon suggested I add 1000 mg of calcium to my daily supplements and this has helped a lot. I have not had a recurrence since. I guess it could just be a loss of these minerals due to the chemo in general.

Friday, I was back at the Oncologists office for my quick session of Erbitux. Erbitux I get weekly, the big chemo I get only every other week. The Erbitux treatment really has no side-effects, aside from the "Erbitux rash" the acne-like breakout on my face. But the Benedryl that I get with it really knocked me out.

Acupuncture on Saturday morning went well. I really feel it is helping. Not only with neuropathy, but Dr Lee, my acupuncturist, is also targeting my immune system in different ways too. She gave me some Milk Thistle to help detox the liver, since there are so many different drugs getting metabolized in me now. She also noted a knot in the muscles between my thumb and forefinger and made adjustments to treat it. Later that night I was up till the wee hours of the morning enjoying my High School Reunion. It was a blast.

Sunday afternoon I was back in the gym, lifting weights and making very significant gains. I have the whole week to feel great now.