Tuesday, February 28, 2012

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.

Tuesday, February 21, 2012

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.

Monday, February 20, 2012

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.

Sunday, February 19, 2012

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.

Thursday, February 16, 2012

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

Tuesday, February 14, 2012

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.

Monday, February 13, 2012

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.

Saturday, February 11, 2012

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.

Friday, February 10, 2012

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.

Wednesday, February 8, 2012

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!

Tuesday, February 7, 2012

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.

Monday, February 6, 2012

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?

Saturday, February 4, 2012

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.