I've been meaning to post an update for many years now and today I finally am posting that update. I've not reviewed what I wrote 15 years ago but can state that I remain alive today and am relatively healthy (I've had problems with herniated disks but that's another story). So I think it's fair to say that my December, 2005 stem cell transplant has proved successful. 

Having had one relapse 15 years after first being diagnosed with Diffuse Large B-Cell Lymphoma in 1990,  I am always a little fearful of another relapse. But in general I consider myself fortunate to have had Lymphoma in 1990 at age 40, a relapse in 2005 at age 55 and to still be alive and pretty much thriving in 2020 at age 70. 

My second 15 year relapse anniversary was in June of this year and since I've passed that month without another relapse I am choosing to believe the relapse timetable has been broken.

Hospital Discharge scheduled for Tuesday, January 3, 2006

Tomorrow, Tuesday, January 3, 2006, I will be discharged from the hospital and will be going home for the remainder of my recovery. This is great news on two accounts.

1. I’m going home


2. More importantly it says the Stem Cell Transplant has gone well and the graft of my stem cells is successfully under way.

The high dose chemo essentially wipes out all your blood cells: whites, reds, platelets, etc. One of the measurements of white blood cells is ANC or Absolute Neutrophil Count. Neutrophils are the most numerous of the white blood cells. They make up about 56 percent of white blood cells and are the “soldiers” that fight infections. They eat or gobble up the infectious particles (bacteria) in your body.

As expected my ANC got lower and lower until it went to zero on DAY +7 (Dec 29, 2005). On DAY +9 (New Years Eve) it rose to 200, DAY +10 it was 800 and today, DAY + 11 it was over 2900. These Neutrophils are from my transplanted stem cells and the rapid increase is an indication of the success of the grafting of my stem cells.

With an ANC below 1000 one is considered Neutropenic and is vulnerable to opportunistic infection. I had to wear a mask when I left my hospital room during those miserable neutropenic days.

I’m a very happy guy to be going home tomorrow. There’s still about two months recovery before my blood counts come all the way back and I am back to full strength. The next two weeks are the most critical and I’ve got to be careful with diet and environment. My white counts will still be far lower than the average healthy person and it will be easy to pick up an opportunistic infection.

At any rate it’ll be more fun to be careful from home than from the hospital.

Thank you to everyone who has called and emailed. Your prayers and good wishes have been a great pick me up and I will return calls and reply to emails in the not very distant future.

Visitors

 
 

Dave Layne, a colleague and friend, stopped in for a very pleasant visit. Here's Dave with Linda.

 
 

Linda with Susan and Joe Epstein -- Joe had a slight cough and thought it the better part of valor to wear a mask for my protection. I thought with the mask and the Cowboy Hat that he was about to rob a bank.

 
 

Angela LoRe is spending a week in Denver to visit me and to spend time with Linda so she's not so alone facing the care giving aspects of this illness and its treatment.


Others who have visited (before it occured to me document as much as I can digitally) include Nima Lekmine, Jan Chang, Jessica Edewards, and Sandy and Paul Jeffrey.

Albert Einstein Action Figure

 

 

This wonderful Chanukah gift both protects and increases the computational power of my laptop. As far as I can tell the action part of the Albert Einstein Action Figure is the chalk he is holding in his right hand.

In the Hospital: Days 0 through 7

As I write this it is DAY 0, the day of my Stem Cell Transplant. There are four transplants taking place today and the Cybopreservation crew is scurrying around getting everybody’s frozen cells ready for transplant.

My day started with a ½ hour of infusion the anti-nausea drug Zofran. This means I’m a slave to my IV pole for the next 5 hours or so. Then I get two hours of hydration with a saline/dextrose type solution.

Premeds for the transplant will include:

1. Tylenol


2. Benadryl


3. Atavin


4. Hydro-cortisone

I have also been given an anti-fungal medication called Fluconazole. I’m told I will be taking this drug for about a month.

Tomorrow (DAY +1) I will start taking the following medications:

• Acyclovir an Anti-Viral


• Levofloxacin an Anti-Bacterial

Lexofloxacin with a brand name of Levaquin is controversial in some quarters. If I have this right, Levofloxacin is part of a category of broad spectrum synthetically created antibiotics called Quinolones. Cipro, one of this class of drug, received great attention during the Anthrax scare of 2001.

A colleague of mine who worked at NBC during the post 9/11 Anthrax incidents took Cipro a number of times and experienced some pretty nasty side effects that lasted a very long time and he has warned me away from any Quinolone. It’s not hard to find many web sites warning of the dangers of Quinolenes.

I’ve taken Levaquin twice in the last year, once as part of this Lymphoma treatment and once for another procedure. I may have suffered some insomnia but no other dramatic ill effects. In the context of this Lymphoma and its treatment, I’m going to take the Levaquin without worrying about its potential ill effects.

The Stem Cell Transplant was itself pretty anti-climactic. The premeds for the transplant left me feeling pretty woozy.

DAY +1 thru +7

I was hoping to keep a contemporaneous diary of these days bet felt so lousy that I didn’t. Suffice it say there was plenty of nausea and other gastro-intestinal upset left me feeling like I did not want to do anything. My blood counts decreased to the point where I needed a platelet transfusion and red blood transfusion. To boost my white counts I’ve had daily shots of Neupogen the last few days.

All of these things are, I think, within the range of normal for this treatment and I was well warned in advance to expect to feel this lousy. While it’s nice to be forewarned, the experience always seems be an order of magnitude greater.

Some call a Stem Cell Translant a new Birthday

  

Linda - Supervising the Whole Operation

  

Me at my workstation knowing my Stem Cells are about to arrive

  

Mark and Keri ready to get down to business

  

The Keg that delivered my Stem Cells

  

The Hot Dog Cooker aka Stem Cell Warmer

  

The Presentation of the Frozen Stem Cells

  

Stem Cells taking a warm bath

  

Keri continuing to defrost my Stem Cells

  

Receiving my Stem Cells

 
 

In the Hospital: Days -3, -2 and -1

Day -3 passed uneventfully – I was administered Ara-C and Etoposide (the A and E in the BEAM High Dose Chemotherapy regimen that I am receiving). This was the fourth day I’d received these drugs and I had no ill effects and still feel reasonably well considering I am cooped up in a hospital all day long, every day long.

Day -2, I was administered Melphalon (the M in BEAM) and this is considered the worst of the chemo drugs in this regimen. It very likely will cause lovely side effects such as mouth sores, nausea, vomiting and diarrhea.

With the Melphalon I experienced slight nausea through much of the day but nothing too terrible or disabling. At night, in addition to the pill I am given for sleeping -- Trazodone  (after looking it up on the web I discovered it is actually an anti-depressant with sedative effect) -- I also took 1 mg of Atavin (aka Lorezapam) which works well for nausea in chemotherapy patients. Atavin is also an anti-anxiety drug and between it and the Trazadone I had a restful night in spite of the hospital environment.

Day -2 also provided a thrill. The weather in Denver went up from the single digits to the mid-50’s on Day -2. And I found out from the Day Nurse (to my surprise) that I was permitted to leave the 3rd floor Oncology/Transplant unit and go outside. So Linda, me and my IV pole sat outside and basked in the warm Denver sun chatting for about 20 minutes on Day -2 afternoon. When you’ve been deprived of outdoor life for five days, 20 minutes in the sunshine is a wonderful thing.

Today, (Day -1), the Winter Solstice, Dec 21, 2005, I am being administered Zofran (the anti–nausea drug) by infusion and at approximately 11 am Denver time I will be finished with my hydration and will be freed from the IV pole for a day or more. Let me repeat that: freed from the IV pole – a very liberating experience.

Day -1 is considered a rest day – a day with no chemo – a day with no IV pole for the most part – the day before the Stem Cell Transplant.

Later on Day -1, I was provided another outdoor thrill – without the IV pole, Linda and I were able to leave the hospital and wander the immediate neighborhood during this 50 degree partially sunny Denver afternoon.

On Day 0, Thursday, Dec 22, my stem cells will be transplanted back into me, an anticlimactic event I am told. My stem cells were collected on Friday, November 25th, the day after Thanksgiving. After processing, they are frozen in liquid nitrogen at around -165 degrees Centigrade in bags inside of small metal caskets which live inside of liquid nitrogen tanks.

See the following links for some explanation of bone marrow and stem cell transplants and on the stem cell collection process:

http://www.lymphomainfo.net/therapy/transplants/bmt.html
http://www.lymphomainfo.net/therapy/transplants/stemcell.html

Shortly after being admitted to the hospital on December 15, I went into the Cyropreservation Cell Processing room and said hello to my stem cells and told them to “Behave Themselves”. The technician in the room thought I was crazy and said, “Don’t worry about it, at -165 C they ain’t goin’ nowhere.”

The Stem Cells will be thawed tomorrow. The plastic bags go into a warm water bath and into something that I am told looks like a hot dog cooker (a chafing dish of sorts, I presume). A nurse practitioner will bring the temperature down to 37 degrees C and will administer the stem cells to me as an infusion via a syringe into an access port of my Central Venous Catheter.

The stem cells are preserved in a substance called DMSO which emits a strong odor/aroma for about 36 to 48 hours after the transplant. I have heard different things from different people and the odor/aroma has been variously described as like garlic coming through your pores, like cream corn, like fish, not at all objectionable, just a strong food like aroma, and also as highly repulsive – a truly horrible odor.

There will be another transplant taking place on my floor tomorrow so the PS/L BMT South Wing should be an interesting olfactory experience for anybody who chooses to visit.

I received a question from a friend asking if Chemotherapy attacks only malignant cells and not healthy cells. My understanding is that for my type of Lymphoma, the chemotherapy I’ve been receiving wipes out both healthy cells and malignant cells. The healthy cells can be regenerated from the bone marrow and hopefully the chemo wipes out all malignant cells and they will never be seen again.

In my case, I need the more extreme measure of a stem cell transplant in order to accomplish this task.

I’ve also heard via email from a few people admiring my knowledge of Lymphoma and its treatments. As much as I love praise, I must say that I went into this occurrence of Lymphoma remarkably ignorant considering I’d had this disease back in 1990. And today, while I feel I have learned a helluva lot, my knowledge is truly nothing more than skin deep.

This disease and its treatment are so complex and Diffuse Large B-Cell Lymphoma is only one of about 30 Lymphomas (many of which have different treatments) and it’s only one of God knows how many other types of cancers (virtually all of which have different treatments, I think). All I can do is try to learn enough so that I can be a good advocate for my own treatment – asking appropriate questions and demanding (having spent most of my life in New York City has made me proficient at demanding) appropriate necessities and remedies.

Now to change the tone and topic here are a couple more Computer Programs that I really like that I forgot to include in the last posting:

Lookout – fabulous Outlook Search Tool: www.lookoutsoft.com/Lookout/lookoutinfo.html

Google Earth (a 3D interface to the planet) I love using this to zoom from an outer space view of earth to the building we lived in in New York City to the townhouse we’re renting in Denver. I haven’t done anything else with it but the potential seems great. And for 20 bucks a year you can upgrade to Google Earth Plus in beta and import GPS data.

There was an article on the front page of the NY Times on Tuesday, December 20, 2005 talking about how Google Earth is threatening to other countries for security reasons – Russia and India have protested. It is amazing the power Google has amassed. And we all thought Microsoft was going to take over the world – Google is literally over the world.
http://earth.google.com

And now for some quick Movie Reviews. Disclaimer: Watching a DVD of a movie while in a hospital room with endless interruptions may not be the best way to evaluate how much one enjoyed a movie. Nevertheless here goes:

War of the Worlds (Spielberg/Tom Cruise) – Two Thumbs Down – neither Linda nor I liked it; she hated it more than I did.

Hotel Rwanda (Don Cheadle): I thought it was a terrific movie with a great performance. Unfathomable that this massacre could have occurred 11 years ago without international outrage and intervention. Linda feels more or less the same.

Next posting will likely concentrate on Blood Counts and what they will mean for me and how I feel. Stay tuned – it might be more interesting than it sounds.

In the Hospital: Days -5 and -4

Chemotherapy Annoyances

So far I've been fortunate and have experienced only minimal side effects from my chemotherapy treatment and that leaves me free to complain about the annoyances associated with chemotherapy treatment in the hospital.

Most annoying is being tethered to the IV pole 23 1/2 hours per day. I generally escape for 1/2 hour in the morning to take a shower. The administration of the chemo I've been getting can take up to 5 hours per day via bags hanging on the IV pole going through a pump via feed lines and ultimately going into an access port of my central venous catheter.

During the chemo and throughout the rest of the day I am receiving hydration in the form of a solution called D5 1/2 NS which is Dextrose, 1/2 normal saline, with potassium and magnesium. The reason for the hydration is to flush the chemo out of my system so it doesn't provide unintended consequences to perfectly innocent organs in my body. The result is frequent urination throughout the day and night.

In the morning, prior to my first chemo infusion of the day, I am infused with an anti-nausea drug called Zofran. In addition I take 5 pills of a steroid called dexamethasone which according to one of the nurses works synergistically with Zofran to prevent nausea.

This is clearly working well since I've experienced almost no nausea.

One of the unfortunate side effects of Zofran is constipation which I've experienced in this and previous chemo treatments. This has been very unpleasant and ends up being treated with stool softeners (Colace) and laxatives (from Milk of Magnesia to Senokot).

Aggravated hemorrhoids caused by the constipation is another consequence and now we're talking about a topical ointment called Anusol and sitz baths to help resolve that problem.

This has been a new world to me but it's something I've got to deal with because even if not life-threatening, it sure makes my life unpleasant.

After tomorrow when I am finished with my chemo infusions, I should be generally untethered from the IV pole unless I need infusions of medications next week to help counteract some of the effects of the chemo associated with dropping blood cell counts. Being generally untethered will be cause for celebration!

Another potential problem is mouth sores and in it's most extreme case is called Mucositis.

From the Cancer Supportive Care web site: www.cancersupportivecare.com/drug.php#sore

Sore Mouth and Throat (Mucositis)

A sore or ulcerated mouth or throat is a frequent side effect of chemotherapy. .....
The mouth and digestive tract are composed of cells (mucosa) that are more sensitive to chemotherapy. The lining, or mucosa, of the gastrointestinal tract, which includes the inside of the mouth and throat, is one of the most sensitive areas of the body. Thus, during or after chemotherapy, a cancer patient may present with mouth problems, ranging from dryness to ulcers. Many chemotherapy drugs can inflame the lining, a condition called mucositis. Mucositis appears as redness (inflammation), sores (ulcerations) and associated discomfort and pain.

... Three to ten days following chemotherapy, patients may experience a burning sensation, followed by ulcers. When ulceration develops, treatment is mostly supportive until the cells regenerate themselves, which takes about 7 to 14 days (most commonly associated with a low white blood cell count). This can impact on oral comfort and nutrition, but adequate care can minimize these effects.

I experienced extreme sensitivity and tenderness of the gums after my 2nd RICE chemo treatment. The hospital provides a rinse of baking soda and salt and recommends rinsing after each meal and before bedtime. I've been doing the rinse 6x per day to try and preempt this problem since it was so unpleasant when I had it after the RICE treatment. Not only was it painful but it took away a lot of the pleasure of eating which is disastrous in my world!

The mouth sores typically occur after the Melphalan chemo which I'll be receiving tomorrow.

And now to totally change the tone and subject of this Blog Post:

My Favorite Computer Programs I've tried and have been using in the past few months:

RoboForm from Siber Systems – www.roboform.com -- it memorizes passwords on your PC

Migo – www.migosoftware.com -- It synchronizes files between PC's and Laptops including Outlook folders (inbox, other email folders, contacts, calendars, etc.). You can buy it as software; I bought it preinstalled on a Kingston 2 GB USB Drive. It works great -- after working on my laptop at some remote location (like the Transplant floor of a hospital) I will bring the USB drive home, run Migo, and it will update my PC (including all predefined Outlook folders) with whatever work I've done on the laptop.

Podcasting download software -- I'm using WNYC Pubcatcher which I got from http://www.nyc.org/about/podcasting.html -- there are many other podcasting download software packages available.

RSS Reader – www.rssreader.com -- from the RssReader web site:RSS (Really Simple Syndication) is a format for syndicating news. I also use it to link to the Fresh Air web site as an easy way to stream audio from that web site in order to listen to shows I've missed and am interested in. There are plenty of other RSS readers available.

SKYPE – www.skype.com -- for VOiP phone calls via one's computer. Free for Skype to Skype calls, I've been speaking to my buddies Don Garrison and Jeff Baker working in Torino, Italy in preparation for the NBC broadcast of the Winter Olympics and my friend and colleague Ray Lowe in New Jersey. It's pretty remarkable -- quality is generally good.

Vonage – www.vonage.com -- I use this VOiP phone service for my home office voice and fax lines. It runs over the internet via my cable modem. It was very easy to set up. For my usage Vonage provided a router with access for two standard phone lines and the Vonage router plugs into my router via a CAT5 cable. I would say I'm 98% satisfied. I've had a few problems with dropped calls (mostly when I talk to Ray Lowe -- maybe there's the problem) and echo but it's been mostly reliable with mostly good quality. Their web based account management tools are pretty lame but they'll probably improve those down the road.

I think that's enough of this for now. In a couple of days my next post will probably talk about my impending stem cell transplant and what I know about that. Until then .... best wishes and much love to all.