Wednesday, February 25, 2009


Day -16 Health Score 79
Today was a little tougher. I don't know if it is the Neupogen; I don't think so. I am just quite fatigued. I also think I'm down because I spent the day alone. However, I just spoke to Barbie and she is going to battle the rain and drive down here tonight. She feels good about her test but said that it was very hard. Our communication has become quite organic. For people that don't drink, we talk incessantly about alcohols.
I also am beginning long-term disability, hence the need for much paperwork and many phone calls. But I can't complain; Kaiser has been very good to me. To distract myself, I drove to Half Moon Bay today (a beach town about 25 miles from Mountain View) to ambulate on the beach (Doctors never use a one syllable word when a three or four-syllable will suffice). The waves were massive and I knew they would be great for boogey-boarding, but it is cold and I can't get my Hickman catheter wet.
I feel better this evening, probably because I will soon see my sweetheart.



Wendy said...

OK. The line about "for people that don't drink...." I got a hearty giggle out of that. You have a way with words. :)

Anonymous said...

Kevin, I'm sending you our best nupogenic wishes today. I remember we went out for lunch after Ed's Nupogen treatment, and we thought we were so superior that he had no immediate effects from it. But it was just the beginning of the ride. Hope yours is even smoother.
P.S. I watched the cartoon video - very informative. And it almost lulled me to sleep....
love, Aunt Renie

Anonymous said...

Hi Kevin, keep thinking positive. We have come this far and don't turn back now. You are my HERO! I pray for you each day that God helps you to be strong during this difficult time. I'm watching you and I know life will be good for us in the future. Keep thinking about the beautiful grand children we are going to enjoy. They need their grandfather here to teach them about life, Kevin. You are that person! You have always supported me and I don't know where I would be today without your love and support (Barbie too). I know Tippi feels the same way too. Every time there's a bump in the road, Tippi and I are so glad we have you to help us get through it. I know there's not much we can do at this time but pray. Know that Tippi and I are praying for you. Be strong!
love, Debbie

Anonymous said...

Kevin ~
I am sorry you felt lonely today.It must be so hard to be away from your family even for a day. Please know that we are here if you need anything. Bill works in Mountain View & I am just 40 min from you. If you or Barbie even find a need or just need a friend, please call.
We love you all SO much!!
You are always in our thoughts and prayers.


Anonymous said...

Hello Kevin,
Ed Krug, Donna's husband, here. We talked when I came down with my multiple myeloma. I have fond memmories of my Neupogen phase. I don’t recall the tiredness. I may have already been tired and it was no increase, and it was not uncomfortable. A couple of days after the Neupogen I did notice at night pain first in the upper femur and then pelvis area. It lasted only one night for me. The directions said take an NSAID pain med, which I did. The pain was not intense, just annoying. Movement seemed to help. I finally got up and read or watched the TV, standing and frequently changing positions. The changing of positions by itself gave brief relief.

At first I was puzzled what the pain was, but then finally realized that it was simply strong growing pains. The proliferation of cells from the Neuupogen was causing internal bone pressure. Your hot spots for growth may be different, but mine were upper thigh and hip. I was happy that it only lasted one night. One thing I have come to realize about my myeloma ordeal is that in absence of mystery, there is no fear. You cannot have a horror movie if there are no unknowns.

I didn’t keep a detailed log of my trek through this wonderland of people putting holes in my body, but I was doing a writing course at the time and used this issue as subject material. I will attach the story. I turned it in fifteen days after the cytoxin and three days before the Melphalin. I hope you find it entertaining.

I just connected with your blog and haven’t yet read the earlier posts, but will go back and do that.

I have included my email address in case there is any off-blog discussion that occurs to you.
One foot in front of the other.
Ed Krug

I know this is not a good excuse, but I don’t have a dog to eat my homework, so I have to resort to the truth.

I have been trying to get my report done on the computer, but everything is going wrong. I am behind schedule, my tall-backed, overstuffed green leather chair keeps wanting to roll away from the desk because of the sloped floor in this old house, and my hips are killing me. I also might be having a bit of the brain fog from my cancer treatment. I have heard that it happens to some people. This scares me since I have a lot of things I want to get done yet.

I had been diagnosed with a bone marrow cancer between Christmas and New Years day, about nine months ago, and it was damned inconvenient. My dad is still kicking at 91. Here I am coming down with an incurable cancer at only 60. I had explored ageing research during my Ph.D. at U.C. Berkeley; I have been on an antioxidant regime of vitamins for over thirty years, and all for nothing. My dad even smokes. This isn’t right.

I move to cut down on the hip pain, but it helps only for about a minute. I feel around to crest of my left hip bone where Dr. Allen took a bone marrow biopsy three weeks ago, and it is no more painful there then any other part of my hip.

I chuckle as I recall that biopsy. It was my fourth bone marrow biopsy and I was getting casual about them. After spending enough time in hospital gowns with my butt exposed, I had decided it was time to have some fun. I wore a pair of red and white, baggy, underwear with the cartoon Scooby Doo on them to this procedure. On a earlier procedure where they were taking X-rays of all my bones, some 20 exposures, I was in a bare backed gown, with only a pair of simple black underwear on, and the X-ray technician was cute and a fun person. I had tried to make an impression on her, and the only thing I could come up with was; “You have taken over 20 pictures of me, and not once have you asked me to smile!” She laughed and replied that I was the first one to use that line on her.

For years I had heard comments about nurses laughing at patients that come to the emergency room with dirty underwear. I had decided to change the rules on this game and get some good out of my underwear in the hospital. My chance came at the bone marrow biopsy.

I had gotten over the idea of this procedure being done in a surgical setting by the second biopsy. The first one was done as part of a research project at the University of Colorado Medical Center, and it didn’t count.

The room was like a generic individual patient waiting room, chairs, sink, pressure cuff machine and with the high patient table replaced with a low, narrow table, similar to a massage table, without the hole to put your face in as you lie face down. Like usual, it was covered with a layer of disposable white paper. I waited as ordered and noticed that on the counter were two trays with an array of syringes, disposable scalpels, blood vacuutainers, microscope slides and a jar of fixative for slides, sample vials, and more. The proper ones were sterile wrapped, and as curious as I was, I chose to not touch anything.

The nurse, Christie, came back in. She had just left after having asking all the preliminary questions, taking a blood sample, and measured my blood pressure. She told me to take the bulking things out of my pockets, unbuckle my pants, and lie down on the table, face down. Having done this before, I was serious about being comfortable, and emptied all my pants pockets and even removed my belt. I was waiting for the opportunity to catch Allen by surprise with the comic underwear, but not yet.

Dr. Allen came in and after a few pleasantries, she too told me to lie down, unfasten my pants and lower them part way down. Dr. Allen is a woman in her fifties with a stocky build, short hair, and a gruff manner. She is very knowledgeable and gets to the point quickly, but because of her appearance, I have always wondered if her mate is also a female.

As I lie there with my shirt up and pants lowered and enough of my butt crack showing to make any plumber proud, I am sure she has seen at least the top of my underwear but has made no comment as she is scrubbing my hip area with an antiseptic. I mention that after missing an opportunity to flash the X-ray technician, I wore special underwear for this procedure. I am face down on the table, facing away from the side she is standing on and I can only hear her let out a roar. I was apparently the first one to pull this on her.

As I lie there she injects my hip with a local anesthetic, and like usual it causes the most pain of the entire procedure. The needle she is using is about the size of a sewing needle, but it still hurts. In less than a minute she starts in with a second needle a bit thicker than a toothpick and about three inches long. I had looked, and instead of the normal needle point, this had teeth all the way around at the tip to drill through bone.

She is pressing down hard as the needle grinds through my hip bone, but there is no pain, just pressure. She does ask, however, if it hurts. I hear her say to Christine, “I can stand the screaming, but I hate it when they move.”

I ask; “Do you actually have people screaming while you do this?”

She answers, “Yes.”

I am surprised, but not completely. Some people are in pain just out of fear. She keeps drilling.

She stops pressing, but starts wiggling the needle side to side, and I ask what she is doing.

“I am just breaking a sample of bone free.”

Before I know it, she is done and is pressing on my hip with most of her weight. This is fairly large hole and to stop the bleeding they press down with gauze on the hole. “Can I see the bone sample?” I ask.

Christine brings it over so I can see it. It is in a small bottle, floating in a blood-tinged liquid.

“Roll over and put some weight on the hip.” Allen tells me, and I comply. I know that I will be in that position for at least ten minutes, so I take a nap.

“Time to wake up.” Christine tells me. I have seen Christine a number of times before when I have come in for cancer drugs, and she is in her thirties, slender, blond, and cute. She also has an air of propriety about her that make me not look at her in a sexual way. I have never seen her laugh, so I find it hard to imagine her being much fun in bed. She is just too stiff.

Christine directs me to another waiting room where Dr. Allen joins us. She is going over the lab results from earlier this week. “Kidney function still is about 24%, and the circulating cancer protein is at 106. That is starting to go up, so it is time to get moving on the stem cell transplant.”

“I have things to do. Is there any way I can put this off until Christmas?”

“Forget about your job, we are talking about your life here. The cancer cells are starting to adapt to the drug, and as they start putting out more of the lambda light chain, your kidney function will decline again, and you may loose your kidneys totally.” She has said most of this before, so it is no surprise. This type of cancer, called multiple myeloma, is made up of cells that normally make antibodies, which is a good thing. The cells that have gone cancerous only make a part of the normal antibody structure called the lambda light chain. Unfortunately, it makes a ton of it and it clogs kidneys, and in bad cases also harms the heart. In my case, this protein had reduced my kidney function to only nine percent at one point. I had to go onto dialysis for four hours three times a week for a month and a half before my kidneys recovered to twenty-four percent function. I did not want to try that again.

As we are scheduling my entering the stem cell transplant program I mention that I have given up on trying Viagra. We had discussed this previously since, with my blood having a third fewer cells in it than normal, and I was getting anti cancer drugs twice a week for several months, erections just were a thing of the past. My wife and I had had an active sex life, and we both missed it.

I had looked up the side effects of Viagra, and with my PH.D. in anatomy and physiology, I read the scientific literature on it too. It happens that there is a set of nerves at the back of the eye that uses the same receptor types that Viagra affects when it causes penile erections. The down side is that there were cases reported that this effect on the nerves in the eye causes blindness within forty eight hours. Leading up to telling her this discovery, I was saying to Dr. Allen, “I have given up on trying Viagra because I saw reports that it caused blindness. This happened because … .”

I didn’t get any farther.

“That’s probably because of too much masturbating.” she interjects. She has a laugh on her face.

“I didn’t know that.” Christine says. We both looked over at Christine, and she looks partly mystified, and partly shocked.

For a second, I wonder if she has a partner that is using Viagra, but I only ask, ”Hadn’t you heard that before? Boy, you’ve led a sheltered life. Where did you grow up?”

“Iowa.” she says.

Both Dr. Allen and I razz her a bit more, and then wrap up our business. As we start to leave the room, Dr. Allen looks back at me, laughingly, and says, “I figured that any body who would wear Scooby Doo underwear could handle a joke about masturbation.”

I laugh and say, “Yep.”

The whole bone marrow biopsy incident took a long time when it happened, but passed by in an instant as I reflected on it, sitting in the chair rubbing the puncture spot, with my hips hurting three weeks later. The pain was not from the hole in my hip, but from the drug that had caused my bone marrow cells to proliferate at a fantastic rate. The bone marrow cells in my hip, and elsewhere were pressing outward against the bones and causing the pain. These were just intense growing pains.

I took two Tylenol and the pain was still so bad that I could not concentrate, so I tried to go to bed. The pain continued, and I could describe all that I did to try stop it, but that would get into more intimate details than you might want, so I will stop there.

And that is the reason I was late getting my report in.

Instructor Wright: Ed:

This is tererificly candid and very redable.

I originally thought it was your homework assignment, which is why i wrote the note to you that I did last night.

Then I started reading it and thought it was just a long email to me about your writing process.

Then I realized it was really your assignment because it had all the right ingredients: chronology, details, quotes, observation, rising and falling action, candor, and mystery.

There's really not much I can offer ini criticism. The writing is that good and that clear. There are perhaps a few places where the chronology could be clearer or more concise, but I see this as a rough draft and such polish would come if you chose to rewrite this.

I don't know what you might have in mind with this piece -- whether it's really just an email to me that turned into a narrative assignment or whether you are thinking of it in terms of an essay/article that you would market.

That said, I don't know of a specific market that I could suggest. If you did want to seek a way to share this with others, you could try local newspapers or a community newspaper (although the masterbation references might have to be cut).

But there are myriad Internet sites in the world today. Many are develoted to medical topics, both for narratives of a person's process with a medical challenge as well as insights and humor. There can't be too much humor about such challenges.

Most of these sites don't pay, but that may not be a factor for you.

The main feedback I want to give is how much I enjoyed this and the honesty that you display. Plus the writing is good. Humor is hard to convey.

Thanks for sharing.

9/26/2008 11:59:52 PM
Regina: Ed:

I thought this was your best narrative: you used dialogue, humor, suspense, scenery very well. I actually felt like you were a dear friend, sharing an intimate part of your life with me.

You conveyed such honesty when you compared yourself to your smoking, 91-year-old father. So many of us have those same feelings, but are ashamed to admit it. Very nice touch.

I liked the Scooby Doo underwear. I have done similar things, when I have surgeries. In some small way, it takes some of the agony out of what your experiencing.

I blushed a few times when you talked about sex. That's not a bad thing -- this entire piece evoked many emotions.

Your descriptions of the doctor and the nurse were funny and sometimes crude. Again, nicely done.

This essay was poignant. You did a wonderful job at drawing the reader into your world.

I wish you well!

9/24/2008 6:42:36 PM