Bald and Beautiful? No, just bald!

Now that I've been "follically challenged" for a few days, here are a few observations:

Advantages:

• No waking up with bed head



• No need for shampoo



• Windy day…no problem



• No fussing after putting on headsets, glasses, hats, etc.



• I don’t have to shave in the morning



• More comfortable in hot weather

Disadvantages:

• It gets kinda cold up there



• You know that guy JT Martinez from Dancing With The Stars who got his face blown off in Afghanistan. I think he's better looking then me now! (But I think I'm still better than Steven Tyler. Imagine that cockroach with no hair!")

One more week to go before checking in for the transplant. Still feeling great - both physically and emotionally. I'm ready!

Wouldn't this be a nice birthday present?

I'm 59 today. Happy birthday to me!

Tripped across an article online that had a very encouraging headline:

Picture of me and Hillary Jan 2, 2012 BC (Before Chemo)

Novel Therapies Put Multiple Myeloma 'On the Ropes'
By: SUSAN LONDON, Oncology Report Digital Network
SAN FRANCISCO – A sweep of new agents are poised to deliver what could be a knock-out blow to multiple myeloma, according to the director of the myeloma program at the University of California, San Francisco.

Regrettably, I believe the headline and lead paragraph are a bit too optimistic on the status of solving this rotten disease. Yes, it is true that progress is being made in finding novel therapies. And the pace of the progress is rapid. But no one really sees a universal treatment, much less a cure in sight. Nevertheless, it is encouraging to at least hear people talking this way.

The full article can be referenced here if you are interested: Article

As for my birthday...I'm getting settled into my new buzz cut. I still enjoy the feeling of being treated special on my birthday, particularly hearing from old friends. Just cashed in on my free birthday meal at Denny's (Grand Slam, baby!).

As I've said in previous birthday blog posts, birthdays take on new meaning for cancer patients and are truly cause for celebration. Not to tempt fate, but I truly believe I'm going to have quite of few more of these celebrations.

As for the transplant calendar...I'm on hiatus now until I check in for the transplant on Feb. 7th. This means no doctors. No pills. No needles. No restrictions. I'm stoked!

Having a bad hair day

Here is the new look. Not really what you would characterize as "bald" or even "chemo head" but clearly a major image shift.

It is not nearly the punch in the gut that I played it out in my head (the inside part) to be for the past few months. Several of the hairdressers in the salon actually said they liked it better than the old look. One guy in the salon was so inspired that he decided to shave off all of his hair also (I'm not bullshitting. This really happened).

It played out pretty much like it was portrayed in 50/50. When I was washing my hair this morning, the hair was coming out in clumps. I called Karen, who usually cuts my hair, and she told me to come on in.

Yesterday, when I came home from the hospital, I wanted to wash my hair, but I was told I could not get my dressings wet. So I went down to Bob Roy Salon, where I usually get may haircut and one of the stylists was nice enough to wash my hair for me. She used two different shampoos plus a conditioner. When I arrived there today, I charged up to her and angrily said "What the hell did you do to me yesterday?" while I pulled out a huge clump of hair. Mercifully, I cut the punking short, and I even offered to pay for her therapy.

Karen then went to work and the results are as demonstrated above. The reason I did not go completely shiny is two fold....1) Dr. Vescio recommended that I do this because the hair will begin growing back after my final chemo on Feb.9. When it does, it will be very itchy if we start from scratch. 2) Karen, who has done these things before, said that going down to skin from a full head of hair results in a very unappealing differential between the normal tanned skin and the whitish/grey skin that has been protected all along by hair. For people that do end up going to the Mr. Clean look, she recommends starting out with this "military" length and letting it weather a bit before shaving it all off.

We'll see what happens from here. I don't think I'll ever need to go full Yul Brenner. Meanwhile, I am noticing that things are draftier. Additionally, my face hair has slowed down and I no longer have to shave every day, which is kind of nice. Showering time is cut in half. So there are benefits.

Plus, now I can find out how many true friends I have and who has been hanging out with me just because I am so handsome.

Feel free to cast your vote....short hair vs. long?

Still Confounding the Experts - in a positive way

Harvesting started today. And ended! Normally, it takes anywhere from 1 -5 days to collect sufficient stem cells to accomplish two transplants - which is the goal of the collection procedure. Typically, most patients should expect to spend two days in the collection mode. The day began with the usual procedure of getting blood work and a neupogen shot. Then I was wheeled into a surgical suite where a very cheery vascular surgeon implanted a two-way catheter into my jugular vein to accommodate the cell collection. I was then take for an x-ray to make sure the catheter was in the right place and then on to the apheresis room, I was hooked up to a washing machine sized device that collect blood from one of the tubes and put it back through the other, after having collected the appropriate stem cells. During the course of the day, 22 million cells were collected and remarkably, I was told I was done. The only down side was that I didn't receive this news until I was almost home and, while I could have turned around and gone back to Cedars to have the catheter removed, I elected not to impose on my good friend Ken Goldstein, who spent most of the afternoon with me making sure I was well nourished both nutritionally and emotionally. So, I'l have to go back tomorrow, but only for a brief procedure to remove the catheters.

I'm very pleased with the process and particularly with the results. I never experienced any discomfort. The first question the vascular surgeon asked me was "what kind of music would you like to listen to?" and he then proceeded to tune his iPhone to the Pandora 60s Rock station at my request. Dr. W. was young, charming and just on the right side of the line between confident and cocky. It was all over before I knew it and...best of all...nothing hurt.

The collection procedure was similarly uneventful. Ken saved the day by keeping me occupied and laughing. And I'm particularly pleased that my body has responded so well to everything asked of it. BTW: Some of the hospital personnel predicted that I would beat the odds and knock this out in one day...based on the fact that my white blood cell count came roaring back over the weekend and now stands at 36. Just to refresh...normal is from 4 -11. I was down to .2 on Friday...well below normal. Now I'm way above normal....an excellent result. This also explains why I was in so much pain over the weekend. My bones were working overtime to replace the depleted stem cells and that caused the discomfort. I'm fine now.

So, after I get the catheter removed tomorrow, I'm off treatment until Feb 7, when I check into the hospital for the actual transplant.

Onward and upward. I'm feeling good!

Feeling much better today

Woke up this morning with no more bone pain. Went for my daily shot and leared that my white blood cell count had gone from .2 to 3.6 in 24 hours. (low end of normal is 4.0). Apparently, this has something to do with why I was so sore. But, no matter. I'm fine now. Just feeling fatiqued....probably a hangover from all the pain meds.

Tomorrow should be quite a day. I'll be getting my IJ port surgucally installed and the harvest of cells will commence. I'll be cooped up in a chair for about 5 hours...unable to get up. I'm well prepared with toys and entertainment.

Oh My Achin Back

Finally encountering some headwinds., Last night around dinner time, my lower back started to get sore. It got progressively sore throughout the evening to the point where I could not sleep or sit in a comfortable position. I called the hospital to confirm what I had already suspected....that this was the antipated bone pain associated with Neupogen. It is pretty painful....7-8 on a scale of 10. It also seems to deflect any relief. Doesn't matter if I sit in a chair or lie down on my side, stomach, or back. Doesn 't respond to heat or cold. I gobbled a couple of Vicodan, but they did nothing. This morning, I took a couple of dilaudid, and they may have helped some. I would say the pain has gone down to a 4.

At present, I'm sitting in my favorite family room chair. I'm relatively comfortable and somehwat spaced out from the dilaudid. But it appears I may have to put up wth this for a few days.

Susan's perspecive on this seems spot on. The pain is evidence that the stem cells are swimming around and ready for collection. In other words, the shit is working.

Rock on!

A Sensible Idea

I was advised today that I should really become germ phobic. Stay out of public places. Wash hands obsessively. Walk around with hand sanitizer. It made me think of a recent song by my Facebook friend and songwriter extraordinaire Christine Lavin. The solution is simple....Bring Back the Bow! (click here to play).

BTW: It is Day 3 of Neupogen. No changes. I have no pain. I haven't lost any hair. All is well. Stay tuned.

Also....thank you to whomever sent me the Wisconsin slippers. They arrived today in anonymous packaging. Please reveal yourself. I love them.

Neupogen

Today was my first of what will be at least 8 straight days of trips to Cedars Sinai. Today's trip and the next 6 will be to receive a shot of Neupogen and a blood test. The blood test is to see how my immunity levels are holding up. The Cytoxan I received last week is methodically destroying my white blood cells. The Neupogen increases them in the bone marrow. A normal white blood cell count is between 4 - 11. Mine, today, was 4. Bottom end of normal range. It will soon be below normal so I need to be vigilant to prevent exposure to bad germs. Likely side effects of the Neupogen are bone pain and flu-like symptoms. Haven't experienced them yet, but I'm told I probably will at some point. But, snapshot of where I am today is: feeling fine, both physically and emotionally. BTW: I did follow through on both the bike ride and the tennis match following last week's chemo. As evidenced by the attached photo, my backhand needs some work.

The Bike Ride

I followed through on the bike ride today. Felt amazingly good. Not to rub it in to those of you east of here, especially my Wisconsin homies who just got clobbered with the first big winter storm, but it is a beautiful day here in SoCal. I rode from my house to the Manhattan Beach pier and north through El Segundo, past LAX and on to the bridge spanning the Marina del Rey Channel and back. Total distance of about 15 miles and I covered it in just about an hour. But the main thing is I feel really good for having so much chemo in me.

Tonite, Susan and I are going to see the new movie about Margaret Thatcher. I'm little worried about being in public with so many people sporting colds and such. Thinking about wearing a mask and gloves. And learning to moonwalk.

So far, so good

Just got home from the mobilization. It went just fine. I have yet to experience any nausea. I received Zofran and e-mend as anti- nausea agents and they are working just fine. I also received several bags of saline fluid and gained 9 lbs of water weight. Consequently, the only time I feel like I don't have to pee is when I'm peeing. But this too shall pass. Overall, I'm very pleased with how this has all turned out. Haven't lost one follicle of hair yet, but I'm told that will start in about 10 days. Meanwhile, I'm pretty much back to normal. Planning to play tennis on Saturday. Perhaps an easy bike ride tomorrow. Drinking ginger ale as a treat...ginger being a known tummy tamer and even better when combined with bubbles.

Quick refresher, the purpose of the mobilization is to move my stem cells from the bone marrow and into the circulating blood. Cytoxan is the drug of choice for this and, is has the secondary benefit of killing any cancer cells that it encounters along the way. In the dose I received, Cytoxan will cause my blood counts to drop well below the normal range...the technical term is myelosuppression. By the end of next week, my white blood cell count will be low and I will be at risk for infection. Laura, my lovely transplant coordinator, did every thing but put a stamp on my forehead making me swear to get right to the hospital if I begin to feel the least bit feverish. Meanwhile, we will begin following Howard Hughes-style germ phobic behaviors around here. There will be a bottle of Purex at the front door for all visitors. I need to make sure all my foods are properly washed and cooked. And I need to stay out of public places, nursery schools, and Lee Ruttenberg's house.

I intend to post more frequently now that there is more action. I may not get around to emailing when I post like I usually do. So I encourage you to stop back here periodically for updates if you are so inclined. This is one of 3 posts I have done since I last put out an email prompt. Please also note that is is much easier to post replies than it used to be on the old site. Try it!

Sleepless at Cedars

Greetings from Cedars Sinai. It's 4:30 am and I've been up sine 3 am. I slept from about 10 pm till 3 am. Except for the fact that I can't sleep, I'm feeling remarkably well. No nausea. No discomfort at all. This despite the fact that I received a large dose of Cytoxan at about 5 pm last night. Since then, I've been getting a constant drip of saline IV. This is to prevent the Cytoxan from staying in and damaging my bladder. So, overall, I have very little in the way of complaints - largely thanks to 1) the amazing effectiveness of the anti-nausea drugs and 2) my good friend Ralph Hattenbach who came by with sandwiches from Jerry's Deli to supplant the limited selection of food available to me here. It turns out that my official status is that of an outpatient, so I don't have access to the hospital food service. What I can get is essentially vending machine food. It is a sad day when hospital cafeteria food is considered an upgrade. But Ralph saved the day and I'm comfortable and relieved at how well things have gone so far. I expect to be released by 11 am.

Mobiilization

Greetings from lovely Cedars Sinai. I'm checked in and hooked up to an IV unit and presently marinating in saline solution. In about two hours, they will pump zofran, an anti-nausea med, into me followed by the dreaded Cytoxan. I'm told I will be receiving IVs all night and into the morning. My nurse, Sim, assures me that I won't get nauseous, unless I try to eat the hospital food. He actually warned me that the food service consists of sandwiches and encouraged me to make alternate arrangements. So I'm trying to get someone who lives nearby to bring me some dinner, but if worst comes to worst, Jerry's Deli is right across the street and they deliver.

The room here is a bit different. I am not in a real hospital room, but an anteroom that adjoins the infusion area. It is quite sparse. There is a bed, a lounge chair a TV with VCR and DVD. And what for lack of a better term what I would call a "murphy toilet", which is a toilet bowl that swivels out of the wall. This is where I will be spending the next 20 hours or so.

But I'm well armed with my iPad which is loaded with entertainment. The Badgers tip off against Purdue in about an hour, so that will keep me occupied for a few hours. Sim advised me that I am likely to experience some headachey symptoms from the Cytoxan which will linger and go away.

So, here we are.

Reality Setting In

It’s 2012 and the countdown to transplant is now less than one week to the first major treatment phase…that being the mobilization phase, which involves a walloping dose of Cytoxan to stimulate the bone marrow stem cells to prepare for extraction. This will happen this coming Friday, January 13^th.

(Photo taken NY Day off Palos Verdes Peninsula)

I’m told to expect to be pretty queasy for the weekend. I’m also told this will set into motion the process that will result in my hair falling out….most likely within two weeks of the Cytoxan infusion.

So this is all getting pretty real. And, yes, I’m starting to get a bit spooked about the whole thing. It’s moved beyond the abstract phase of living it out through the experiences of others who have been through this. Gradually, I’m getting to the recognition that this is happening to ME.

I’m still feeling emotionally strong and well prepared for what is coming. I’m not close to panic. My anxiety is highest for two aspects: how nauseous I will be for how long and how long it will take me to get my mojo back. I’m also taking the advice of others who have gone before me and stocking up on things I think I’ll need: Lots of entertainment, my own special blanket and pillow, a stocking cap, some washable slippers. I intend to lock into some TV series that I have not seen but have been highly recommended by friends…including Breaking Bad, Friday Night Lights and The Good Wife. I have a new iPad that will be used for this purpose. It will also serve as a way for me to keep this blog up to date. It will give me the opportunity to video conference from the hospital from my convalescence at home via FaceTime and Skype. And, right now, it allows me to watch the 3 Stooges from anywhere I happen to be.