Update - 6 months post transplant

October 2012

February 2012

January 2012 

Sorry it's been so long.  Hope I didn't' get anyone worried. I'm doing fine.  In fact I'm doing more than fine.  I'm doing phenomenally well.  It now been six months since the transplant, and I am in what is Dr. Vescio is calling SCR - Stringent complete remission.  That is a step above complete remission and a step below cured, which is not a viable step yet for myeloma.  My most recent biopsy did not show any active cancer cells.  So as long as things stay that way, I'm home free.  However, I can't be considered cured because whatever caused my cells to mutate could still be part of my constitution and could cause them to mutate again. But Dr. V, who is generally not a "cheerleader" type, did say that my chances are very good, especially since my chromosomes are still testing normal.    So, it's business as usual.  I am working full time, playing tennis, and riding my bike as evidenced above.

As for hair, it all fell out in February, but is now back.  It came back full.  It came back the same color (mostly dark with touches of grey).  And it came back very curly.  The most recent picture is somewhat distorted as I have "helmet hair" from the bike ride.  But it is quite wavy.  I didn't like it much as first, but  - pardon the pun - it's growing on me.

As for post transplant treatment, I am on a maintenance program of Revlimid and prednisone.  The prednisone is very low dose and it does not seem to affect me at all.  It is far more tolerable than the dreaded dexamethsone, which every cancer patent will tell you is nearly as bad as the chemo.  The Revlimid is a pretty serious drug.  It is a derivative of Thalidomide, which you may recall was given to pregnant women in the 1950s to treat nausea, but resulted in serious birth defects and was taken off the market as a result.  It has proven to be a very effective treatment for myeloma and Revlmid is a rather defanged version of Thalidomide   But it does come with a host of potential side effects.  I've been tolerating it very well, with the exception of some hand and foot cramps that are bothersome but not frequent and not by any means horrible.  Retail price for Revlimid is $900 for a 21 day supply.  Thank goodness for good health insurance - my price is $100.

So, overall, I'm doing very well.  By God's grace I'm doing a lot lot better than most people who are afflicted with Myeloma and/or been treated with the transplant.  Some of my fellow travelers still are recuperating 6 months or more post transplant.  Many don't have nearly the outcome that I have been blessed with.

So, at this point, life is good.  I'll try to continue to post periodically, but if you don't hear from me for awhile, please assume it is because I don't have much to say....as opposed to something bad going on.

By the way....I've been featured in my good friend and fellow traveler Pat Killingsworth's blog.  Pat is has fast become the national clearinghouse for all things myeloma.  He asked me to put together a chronicle of my journey  which  I did in five parts.  None of it will be news to any of you who have been following along here for any length of time.  But in case you are interested, here is a link to the final installment.  Chronicle Part 5  You can search on the rest if you care to by typing my name into the search field on Pat's site.

My Story on Pat's Blog

The myeloma community is quite active on the web.  Perhaps the most prolific and universally followed blogger is Pat Killingsworth....a fellow Badger who now lives in Florida.  Pat updates his blog daily and has written several books about his myeloma experiences.  He as been a source of help and inspiration for patients and caregivers around the world.  Pat and I have not met, but we've become friends via the blogosphere.  Pat asked me to contribute a chronicle of my story for his blog and it has been running for the past few weeks.  Today's installment can be accessed here.  Those of you interested in the topic should check in regularly with Pat's blog at http://multiplemyelomablog.com/

Revlimid and Hair Update

As you can see, my hair is coming back….

I started on Revlimid as a maintenance drug two weeks ago.  Revlimid is one of the two major novel agents that have been widely used over the past five years to combat myeloma (the other being Velcade…which I’ve had twice already).  As discussed in a previous post, Revlimid is being used as a maintenance therapy to try to keep the disease in check.  It is typically combined with dexamethasone for ultimate affect, but knowing how much I hate dex, my doctor agreed to use a low dose of Prednisone instead.  Revlimid works in multiple ways to slow or kill myeloma cells, although the exact way in which it works is not completely understood. It directly affects the tumor cells. It is also known to affect the blood vessels and other substances surrounding a tumor (known as the tumor microenvironment) which help to feed the cancer cell's growth.   It is a derivative of Thalidomide, which you may have heard was used to treat morning sickness in the late ‘50s and was withdrawn from the market after being found to cause some major birth defects (deformed limbs, etc.).  It’s a powerful drug and is associated with many ugly side effects, many of which have been verified by patient/friends of mine using the drug.  As I write this, I’m on day 14 of my Revilmid ingestion.  So far, no problem.   I’ve also been taking the Prednisone for over a week and I’m pleased to report that I’m not able to detect any symptoms but that it is helping to alleviate the steroid withdrawal stiffness I’ve experienced so far. 

As for my scalp….my hair is growing.  Slower than I’d like, but there is definitely observable progress.  Those who haven’t seen me in a while remark that they like my new short hair-do, as though I did this by design.  I went out and bought a comb today!

Beyond that, I’m doing quite well and grateful for how well I’ve recovered from the transplant.

The Maintenance Issue

My hair is starting to return.  In fact, you could not accurately describe me as bald anymore.  I’m now a guy with REALLY short hair.

Met with Dr. Vescio at Cedars yesterday.  We covered a lot of ground.

With regard to my present state, he is very pleased with my blood numbers.  I’m pretty normal there.  He was also very pleased to review my biopsy and commented that I’m “clean as a whistle.”  I brought up some small complaints….I still get rather fatigued late in the day.    Dr. V suspects that it could be a lowered level of testosterone and gave me a shot to address that.  He also ordered another blood test to determine if this is indeed an issue.   I also have a lot of soreness in my joints, which we know is an effect of steroid withdrawal.  He said that could go on for weeks or months.  I also advised Dr. V about some issues regarding my daughter that are causing me a great deal of stress.  He was quite concerned about this, as stress is known to weaken the immune system and can actually give myeloma a jump start to remission.  It is something he wants to closely monitor.

With regard to maintenance therapy, we had a very open and considered discussion.  Dr. V, to his credit, did not knee jerk into a recommendation to go on maintenance drugs. He felt that my myeloma was less aggressive than most so it may be just fine to go on without any additional therapy.  However, he did say that the disease WILL relapse at some point.  He was pretty emphatic about that….didn’t say it might relapse.  He said it will.  The question, of course, is how long and there is no answer to that.  However, he did bring up some food for thought:

1. Generally speaking, each relapse is harder to treat as the myeloma cells become more resistant to treatments.
2. There are studies out indicating that a maintenance regimen of Revlimid (a thalidomide derivative) combined with steroids can double the time before relapse and can also improve overall survival.  So, for example, on average, if I were to go for 5 years before remission without maintenance, I could be expected to go 10 years with maintenance.    The trade off is that the drugs can have some significant side effects….so it can be a trade off between quality of life and…well…life.  Problem is, there is no certainty to any of this.  I could eschew the maintenance therapy and live forever; or I could get on the therapy and relapse in a year.  So it is all a matter of playing the odds based on the experiences of others who have the disease, went into remission, came out of remission, got a transplant and went forward with or without Revlimid and steroids.  None of them, of course, has the exact same disease profile as I do…which does seem to be not only less aggressive but also, significantly, quite responsive to therapy.  After considerable weighing of alternative, it was agreed that I would start out with the maintenance program and see how I respond.  If I do start having a lot of discomfort, we can either lower the dosage or suspend it altogether.

So, starting in a few weeks, I’ll be on 15 mg of Revlimid every day for 3 weeks at a time and then off for a week.  I’ll also be on 50mg of prednisone every other day….a considerably lighter steroid load than the 40 mg of dexamethasone I was ingesting weekly during my last remission (50 mg of Prednisone = 7.5 mg of Dex).  The steroids should not affect me much and will probably have the positive effect of mitigating my joint soreness. 

As for the Revlimid, there can be some pretty significant side effects.  The biggest caution is that you can’t take it if you plan to have children.  You may have read that thalidomide was widely prescribed to pregnant women in the 1950s and resulted in major birth defects.  I am not in a procreation mode, so that is not an issue.  However there are some others.  It can result in blood clots.  It often brings muscle cramps (charlie-horse cramps are common). It can bring moderate to severe neuropathy.  Some people get very constipated, others get diarrhea.    Some have no digestive problems at all.  And it often results in fatigue.  These are not the small print worse case symptoms that the drug manufacturer is required to disclose even though very few people experience them.  These are very common symptoms.  I know several people who take the drug that experience cramps, neuropathy, digestive issues and fatigue to significant degrees.    So it will be a whole new ball game for me.  Again, I have the ability to opt out or reduce the dosage.  So we’ll see how it goes.  It is a bit daunting.

Meanwhile, my recovery is still going very very well.   I'm back to work nearly full time.  I play tennis every weekend.  Ride my bike, etc.  As I mentioned, I do get tired later in the day and I’m sore from the steroid withdrawal, but other than that, I’m back to living a pretty normal life.

CR!!!!!

Those of us in the myeloma community have gotten accustomed to a series of acronyms that classify the results of various trials and treatments. OS = Overall Survival. PFS=Progression Free Survival. ORR=Overall Response Rate. There is PR for Partial Reponse and even NPR for Near Partial Response. But the best one is CR which indicates Complete Remission.

The results of my recent bone marrow biopsy show no evidence of active cancer cells. That puts me in CR - COMPLETE REMISSION!

It is an excellent result and what we have been striving for. However, it should not be confused with "cured". To date, there is no cure for Multiple Myeloma. So there is no guarantee that it won't come back in a day or a week or a year or 10 years. Unfortunately, with MM you are never out of the woods. In fact, it is more likely than not that it will recur at some point. But the objective for the bone marrow transplant (BMT) was to achieve CR and it is felt that the BMT is the best way to extend the duration of the CR and increase the length of my OS and PFS. And the general feeling is that the longer it takes to recur, the better the chances are that new therapies will be available. But even if it were to recur tomorrow, there are still some novel therapies that have not yet been administered to me. And since I have already proven to be very responsive to therapy, the overall prognosis is very encouraging.

So, make no mistake about it. This is not only good news, it is the best possible news.

As for my current physical status, I've returned to work and am now playing tennis regularly. About the only thing left is to get my hair back and there seems to be some progress on that front as well. It is subtle, but the residual hair on my scalp has started turning dark...which indicates that the pigment is kicking in and we should start seeing less scalp relatively soon.

So, all good news on the cancer front for me. I wish the same for my fellow travelers.

Day +47

It is now 47 days since I received my transplant. I’m very pleased with my progress. I’m back to work as of last week. I’m not suffering any symptoms of the treatment….my nausea has gone away. The only time I get nauseous now is when I wake up in the morning and look in the mirror (props to Rodney Dangerfield). I met with Dr. V last week and he commented that he my recovery has been “impressive”. All my blood tests are back in the normal range. My new/old immune system is functioning well….although I have managed to contract a rather minor chest cold. But it hasn’t been any more concerning or problematic than any other cold I’ve had in the past.

I’m not currently on any medications to treat the myeloma. This is mostly very nice, although I am starting to experience stiffness in my joints….probably due to steroid withdrawal. I went through this before, and while it is noticeable, it is far from debilitating.

My stamina seems to be improving. I was able to shag tennis balls with Susan on Saturday for about 45 minutes without experiencing much fatigue.

Next step…bone marrow biopsy scheduled for April 10. This will reveal how effective the therapy has been. If no active myeloma cells are detected, which I expect to the case, I will be considered in complete remission. This, regrettably, is not the same as being cured. But it is the best possible outcome and if things stay that way for a many years, we will have achieved our goal for having undergone this therapy. I’ll let you know when the results come back.

First Bloom of Spring

Pleased to report that I am sprouting some mustache hair. It's not much, but its a start. My dome remains hairless, but I'm anticipating some new arrivals soon. Most symptoms from the BMT ordeal are now gone. I still get dizzy if I exert myself too much, but that is about it. Queasy stomach is now resolved. So, at this point, it is just waiting for my stamina and my coiffure to return.

I meet with Dr. V tomorrow and am expecting that I'll get the green light to return to work. If so, I'll be back on the job on Thursday.

Best regards to Sheri in Idaho who is in the middle of her BMT. Hope all is going well and continues to do so.

Killing Time

It's a beautiful sunny day in Southern California. I went out for my daily constitutional today. I'm walking about 2 miles per day now. I usually start at the Manhattan Beach pier and walk to the border of Hermosa Beach and then back. I'm hoping this will condition me for more strenuous exercise in the near future.

I mentioned in an earlier post that one of my time-filling strategies would be to lock into some TV series that I never connected with. I know I'll be killing some sacred cows here, but here is how it played out. I started by watching Breaking Bad. Everyone raves about it. I got through a season and a half and found it to be a bit too jolting for my delicate soul. I moved on to Arrested Development, two episodes convinced me that it was too silly for me to get deeply involved with (strange evaluation from someone who can watch Three Stooges episodes dozens of times and reveres Caddyshack as high art). Last few days, I locked into Mad Men and I'm liking that a lot. I like the story lines, the acting and am probably most drawn to the retro-nostalgia aspect of it. I'm admittedly very stuck in the '60s. Further evidence....I finished reading 11/22/63, Steven King's new book which involves a time traveler going back in time to stop the JFK assassination. I blew through 800 pages of this. Normally that would take me about a year and 1/2 reading two pages every night before I fall asleep. I've never read a Steven King book before, but found this one addictive.

Health wise...nothing much has changed. I still get periods of mild queasiness. I don't get fatigued much anymore, but then again I'm not doing much to tire me out. I'm still rather fussy about my food. My friend Bridgette has concluded that I'm pregnant.

Tomorrow, I'm thinking I might try riding an exercise bike to see how long I can manage that. I've been a bit reluctant to do this....mostly because I'm conditioned to be a germ-phobe and I consider gyms to be petrie dishes for fungus and other yucky stuff. But my plan is to wipe the bike off with OCD gusto before I start to ride. If it goes well, I may keep doing it for a few days and then see how I do riding a real bike on flat ground.

Doing fine

Sorry if I got anybody worried by not positing for awhile. I didn't post because I didn't have much to report. It's now two weeks since I've been home and overall things are going very well. I still experience some intermittent queasiness, but it is less frequent. My stomach is still somewhat fussy about what I eat. Comfort foods are the most welcome. I'm not too open to sweets or cooked greens (like kale or spinach). On the positive side, I've suspended the anti-nausea meds. I feel less fatigued than I did two weeks ago, but I'm unable to do much more than walk for exercise. I tried hitting some tennis balls with Susan twice over the weekend, but was only able to do so for about 10 minutes before I got dizzy and had to stop. This was somewhat discouraging. I am getting a bit loco staying home with limited activity. I pass the time reading, walking on the sidewalk near the beach, running errands, and meeting friends for lunch. Not a bad life, really, but I would like to get back to where I can do more. But these are minor complaints. Overall, I'm ahead of the curve on recovery and expect that I'll be much closer to resuming normal activities by this time next week. As for my prognosis....there really is nothing to report. I'm assuming everything is fine and we will know for sure in about 3 months when I do my first post-transplant bone marrow biopsy. When I was drafting this post in my head I was toying with the phrase "I'm sick and tired of being sick and tired." Besides that sounding like a corny country song title, it really overstates the case. I'm mostly feeling very good and am getting anxious to get back to work, ride my bike, and eat my normal diet. Patience is not one of my better virtues.

Get up and go got up and went

Sorry I haven't posted in a few days. Overall, I'm doing quite well. But not quite as well as I was this time last week. My zenith was last Friday. I had been taking daily walks and found them rather boring. So I decided that walking to chase a golf ball would be a reasonable alternative. There is a nifty par-3 golf course nearby and I went out and played the course. It felt great, although I did get a bit dizzy walking up the hill on one of the holes. Afterwards, I stopped in to work just to say "hi' and let people know I was OK. Later that evening, we all went to synagogue and then to dinner. The following day was a disaster. I woke up with indigestion, fatigue and diarrhea. I had been warned before I left Cedars that the recovery curve did not go straight up. Now I believe them. I honestly don't think that Saturday's maladies were brought on by me "overdoing it." I think it is just the nature of the beast. By Sunday, I felt quite a bit better. Today, Tuesday, I'm feeling mostly OK. I still have some queasiness in my stomach. But my main complaint is that I have very little "get up and go." For the past few days, I've been quite content to sit in a chair and read a book or stare vacantly at a TV. I'm trying to fight it somewhat by getting out for walks....although we are experiencing unusually cold weather here in SoCal.

A few other things....my taste buds are still quite fussy. Although many people recommend ginger for an upset stomach, I cannot stomach the thought of swallowing ginger in any form. My preference right now is for carbs and comfort foods. A bagel with or without cream cheese is great. Rice bowls with some chicken go down well, as does a mild soft taco. I'm not that keen on frozen treats like ice cream.....which is very odd. However frozen yogurt tastes good. I've also noticed that my sense of smell has reached superhuman dimensions. This is for better or worse, since an overpowering perfume or the smell of something cooking that I don't fancy can make me rather nauseous.

But overall, I'm happy with my progress.

Special note to Sheri in Idaho.....Best of luck. I'm sending you mental energy.

I'm so grateful....

Tuesday. Day+12. Yesterday, Hillary took me down to the beach for a brisk walk and some sea air. Today, I'm feeling about 85% of normal. I not all that fatigued. My appetite is near normal, although I still experience some queasiness. All in all, I'm recovering well and much faster than I would have expected to.

I'm very grateful for that.

But it may go without saying, but I feel I should say it anyway, I'm SOOOOO grateful to the community of support I've received during this ordeal. Specifically....

I'm grateful to all of you who have called, written, come to visit, and expressed your care and concern throughout. It is particularly gratifying that this community encompasses old friends from places in my past such as Horlick High, UW, UCLA, CUNA, TECU, Kforce, JWA, and many other stops along the road. And to hear from new friends from places like Pinpoint, my tennis group, the synagogue, the Manhattan Magnums, the Beach Cities Folk Music Group, Manhattan Beach neighbors, business colleagues, and, of course, my extended family is both humbling and heartening. It honestly makes me feel like I must be doing something right in my life to deserve such wide ranging care and support.

I'm extraordinarily grateful to the medical community that has done such an excellent job of taking care of me and making me feel comfortable and confident. The nurses and doctors at Cedars were outstanding and made a difficult situation not all that bad. And I can't forget the ongoing support from the local Cancer Care Associates. I've always said that I don't really mind going there, I just hate the fact that I have to.

I'm grateful to my fellow travelers. Those that have been through the same treatment and helped prepare me for what was coming. And those who will soon be taking the journey and have expressed their thanks to me for helping show theme the way. Of course, I wish you all a comfortable ride, a speedy recovery and excellent results.

And I could not possibly be more grateful to my spos. Not to get too drippy about it here, but how did I get so lucky?

So, thanks to all of you who have been keeping up with me by reading this blog and showing your support in so many ways. I am truly blessed.

Home Sweet Home

It is Monday morning and I received a wonderful surprise yesterday. My white blood cell count came roaring back from .2 to 2.4, which as enough for the doctor in charge to release me to go home. This is great news is two ways....1) it indicated that my transplanted cells successfully engrafted and that my new immune system is forming rapidly. 2) It means I'm home....about 3-4 days earlier than expected.

I'm feeling really good. I have a slight bit of residual nausea, but nothing horrible. I'm rather weak. It takes a bit more effort than I'm accustomed to to walk up and down the stairs. Overall, my mission for the next several weeks is to just take it easy. I'm supposed to take easy walks, which is a bit problematic since I live on a steep hill and even a walk around the block is taxing on the uphills. I would drive myself down to the beach for a nice flat walk, but I'm not allowed to drive. But I'll figure that out.

Overall, I'm very happy to be home.

As for the transplant, benchmark one....the engraftment....has been achieved. Now the question is....did it result in a complete remission of the myeloma. And the answer to that will be several months off. Normally, the answer could be found in a blood test which would show the amount of M-Protein secreting into my system. However, I am a non-secreter, so the only way to measure the amount of cancer in me is to do a bone marrow biopsy. This will probably be scheduled in about 3 months.

You never know for sure, but I'm guessing that I'm in complete remission and will be for a good long time.

Day +10 turning the corner?

It is Sunday and day +10 and I'm starting to feel close to human. As many of you have surmised, I was just feeling too rotten to type out updates. For the past several days, my white blood cell count approached zero which in addition to leaving me with no immune system, I was very weak. I mostly stayed in bed for the past several days dealing with constant nausea, diarrhea, and a huge red zit on the end of my nose that really hurts. Today,I woke up feeling quite stronger and was advised that my WBC had rocketed'to 2.4 - a very encouraging development. One of the docs here thinks I could be ready for dismissal as soon as today. While that would be lovely , I don't seeing happening. I would happily settle for tomorrow. But like all things here, it's wait and see.

Meanwhile, I'm starting to slowly get my appetite back and am walking around as much as I can. Hopefully , the next update I send will be from home.

Day +7.

Sorry I didn't post yesterday. I was feeling awful. Very weak and very nauseous. As of today, my white blood cell coint has dropped to .2 , which makes me highly neutropenic. Today is not much better.
I Had a period of vomiting today for the first time. Clearly that was no fun. My daily routine consists of being woken up for blood draw and taking of vitals. I then pick at my breakfast and the get separated from my IV so I can shower.theni typically walk around the ward a couple of timers to keep my strength and my mood up. Lunch follows and then I try to read or nap until dinner. All along the way,I'm prodded and probed by various medial professionals.

I'm told to expect things will stay like this for a few more days. So I'm trying to make the best of it. With any luck I can be home by this time next week.

Cancer sucks

Day +5

Happy Valentines Day. I"ve been here for a week now and the bloom is off the rose. Most of the day is just counting the hours until I get worse and ultimately better. As of now, I am quesy most of the time. I have a very limited appetite. I'm pretty weak....don't feel much like getting out of bed. I mostly pass the time reading and watching tv. I have at least ten more days of this to look forward to. I am being well treated by the terrific staff here. And I really appreciate the calls and visits. Today, I'm limiting the about of visitors since I'm not feeling all that comgenial. Might be better to touch bases later this week. All in all , it could be worse, but I would like to get past this ASAP.

Day +4

It is now Day +4 and things are getting tougher. I'm feeling mostly ok, but I do have a fairly constant quesy stomach which is made worse by certain foods, certain activities and seeing Newt Gingrich on the TV. My taste in food is changing daily . Yesterday, the only thing I felt like eating was bagels and cream cheese. Today, the thought of a bagel is disgusting, but I craved shredded wheats. I'm getting quite tired of being cooped up here in the hospital, even though I have no complaints about the quality of my treatment. I' m also feeling considerably weaker...less able to walk around and cause trouble. It is not very heartening to know that things are likely to get worse before they get better. So, needless to say, I'm looking for time to pass quickly. Song for the day: Eric Clapton - Better Make It Through Today.

Day +2. Storm clouds gathering

Two Eds are better than one.

Day +2 is upon us and I'm not quite as chipper. My stomcah has been quesy since my freind Cory came to visit last night (I believe it is coincindental). We've managed the discomfort with a triage of drugs....Zofran, Compazine and Ativan. They work pretty well, but make me feel kind of drowsy. Yesterday, I was told by the nurses that it was hosptial policy to prohibit patients from leaving the ward post-transplant. One of my favorite diversions has been to wander down to the Plaza level which is open airy and has a live piano player. I can also take invigorating walks outdoors on the Plaza level. Fortunately, Dr. Vescio intervened on my behalf and wrote an order that I can go to the Plaza as long as my white blood cell counts remained over 2. Today, I came in at 3.1, down fro 4.7 yesterday and 6.4 the day before. So, I did manage to get out and take my walk this morning and it felt really good. Tomorrow may be the end of that. BTW: I am also required to wear a mask now when I leave my room. People who would otherwise know would undoubtebly walk right past me. With my bald head and a mask on, I'm virtually unrecognizable.

I'm quite fussy about food right now. I have no taste for sweets. I very much enjoyed having a bagel this morning, although it was not a very good bagel. I ate a bowl of cereal dry with no milk in it. And I had a cup of black coffee and some cranberry juice. I decided to pass on the scrambled eggs. Last night, remarkably, I did not want to eat my ice cream. So there is clearly something wrong with me. I also noticed a bit of peach fuzz growing on my lip, meaning my hair may be starting to grow back.

Today is Saturday and I have heard several visitors will be coming by. If you do come and you don't find me in my room, check the Plaza lever - push PL on the elevator. I'll have my cell phone with me if you get lost.

The Actual Transplant

Here is the transplant in process. This is what the show is all about! It took about 20 minutes and was as uneventful as any infusion. I never detected the "creamed corn" odor, although one of the nurses did. It is now 9:30 pm on Day Zero and I have yet to encounter any discomfort. Hope it stays that way, but I've been assured it will not.

My hospital stay so far can be characterized as periods of boredom interrupted by periods of frantic activity. No event here seems to occur in isolation. For example, the room phone always rings when I'm talking to someone else on my cell phone. The doctor visit inevitably is interrupted by meal delivery. But all in all, the visit here has been quite comfortable. Onward to Day 1.

Day Zero

This is what my myeloma cells look like!

Today is Day Zero -the day I undergo the actual transplant. Yesterday, I received my second vial of the dreaded Melphalan. I sucked on ice chips for about 2 1/2 hours before and after the Melphalan injection, to protect against mouth sores. Today at around 10 am, I get my cells back to replace the ones destroyed by the Melphalan. It is rather anti climatic. Takes about 20 minutes and is rather unexceptional, except I've been warned that the cells carry an odor that is something on the order of "creamed corn". I'm told that I will lose my taste for food and will need to force myself to eat. I'll also get pretty fatigued starting today. And the Melphalan is like a ticking time bomb,which will bring on nausea and other discomforts as soon as tomorrow.

Yesterday was action packed. I took a walk to the outdoor plaza level. Watched an episode of Breaking Bad on my iPad. Read several chapters of a book entitled "Employee of the Year" written by Dmitri Ragano whom I work with at Herbalife. The book is quite good! Received visits from Rabbi Mark Hyman, Ken Goldstein, and Susan who joined me for dinner and a TV interview with her not so secret obsession, George Clooney. That plus the usual tests and medication visits made for a very busy day.

So, I'm still feeling fine, but apprehensive about how I'll be this time tomorrow. Stay tuned!

Day -2 Part 2

It's 10:45 pm on Day -2. I just had my first dose of the nasty chemotherapy, Melphalan.. It goes in like a lamb, but apparently turns into a lion in a few days. I feel just fine right now and I'm told that I should not start feeling rotten until early next week. Meanwhile, I'm committed to staying up until 1 am to chew on crushed ice. I've been advised by the medical staff, as well as people that have been through this that the ice therapy is critical for preventing mouth sores and that mouth sores are no fun at all. So, I'm blogging primarily to fight off sleep, as I normally am out cold by now.

Today went pretty much as expected. I arrived around noon, got some lab work done, and then got quizzed by my lovely BMT coordinator and guardian angel Laura to make sure i understood the most important aspects of my treatment. The emphasis was on staying away from germs and calling for help immediately if i experience the least bit of fever or discomfort. I was then taken to the procedure center to have a PICC line installed. That was quick and painless. I was then wheeled over for a quick x-ray to make certain that the PICC line is where it should be, and was then delivered to admissions and brought to my room. I'm in room 4925 of the South tower. I have a fridge and a scenic parking lot view. Who could ask for more? The evening featured a reasonably tasty chicken and rice dinner, an hour of watching Glee, and various tests, leading up to the Melphalan push and the Ice Munching Stay Awake marathon.

It's now 11:15. Only 1 3/4 hours to go. I'll let you know how it turns out tomorrow.

Day -2

Checking in to Cedars later today. I spent yesterday getting prepared - took a bike ride and charged up all my electronic toys. Today is considered Day -2. It will consist of my getting a PICC line surgically inserted in my arm. Then, I was told there will be a lot of waiting around until I get admitted. Tonite at 10 PM, I will receive the first dose of Melphalan, a very heavy duty chemo that will kill everything in it's wake....bad cells, good cells, etc. I was told not to expect too much discomfort immmediatly, but that the tough stuff will start showing up in a few days. I'm feeling fine, although I am not relishing the prospect of spending two weeks or more in the hospital. But I am prepared to make the most of it. More later.

Top Ten

Tomorrow is the big day...sort of. I check into Cedars tomorrow, but the transplant itself won't take place until Thursday. More on that later. Meanwhile, inquiring minds want to know what songs I'm putting on my iPod in preparation for my hospital stay. Here is the top ten:

1. Yes I'm Ready (Barbara Lewis)
2. Let it Grow (dedicated to my hair, not my cancer cells) (Eric Clapton)
3. Feeling Stronger Every Day (Chicago)
4. Still Alive and Well (Edgar Winter)
5. Tubthumper "I get knocked down, but I get up again" (Chumbawumba)
6. Always Look on the Bright Side (Monty Python)
7. Won't Back Down (Tom Petty)
8. Healing (Todd)
9. I Made it Through the Rain/Looks Like We Made It (Barry Manilow)
10. ?

Any suggestions for #10?

The Rules

Only a few more days before I check in to Cedars. I know I've told most of you to check in with Susan regarding my progress and condition. However, since Susan rarely checks her voice mail, I'm going to amend that recommendation. I intend to keep this blog relatively up to date, so I would suggest you just check in here for the latest info.

Please be aware that I can't have flowers - fresh or silk, or plants or food baskets in my room.

For those of you living locally who plan to visit me at Cedars, I was given some rules that I would like to share with you. As you know, I will be very immuo-suppressed from Tuesday on, so visitors will need to be aware of the following rules:

1. Visiting hours are 10 AM to 9 PM daily.
2. Do not visit unless you are free of illness with no recent exposure to infections or immunizations.
3. No children under 18 may visit.
4. Wash hands thoroughly before entering the room. You may be asked to wear a mask.
5. Do not sit on my bed or put shoes on my bed
6. Do not use the bathroom in my hospital room.

I expect to have my cell phone with me and available throughout the stay. But if you can't reach me on my cell, the phone number of the nursing station is 310-423-4415. I can receive calls from 8 AM to 9 PM.

As for current conditions...today is Saturday. I'm feeling excellent. Played tennis this AM. Plan to play again tomorrow before going to a Super Bowl party. Monday will be spent just farting around and buying some last minute items to take to the hospital. Tuesday is check-in day. I'll write more about the expected regimen later this week.

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.