Jon Siegel's Multiple Myeloma Blog

First, a little background. You can read about Multiple Myeloma here or here, and about Peripheral Blood Stem Cell Transplant (PBSCT) here or here. This introduction is only a couple of paragraphs long. The rest of the writeup is a blog or diary with daily entries (but only for the interesting days!), with recent days at the top, getting older towards the bottom. So, to read the story in chronological order, you'll need to scroll or click to the bottom and read upwards, a day at a time. If you've already read about my transplant preps and want to read the (massive!) update about the transplant itself, try starting here. Each day's entry starts with a header in the left-hand column.

My main oncologist is Dr. Paul Richardson at the Dana Farber Cancer Institute in Boston. My local doc is Jon DuBois at Emerson Hospital in Concord.

I'm in good shape for someone with cancer, with no symptoms beyond the susceptibility to infection that started everything during summer 2002 (which you'll be able to read about once I catch the blog up to the beginning).

Right after diagnosis, I started the modern classic drug combination - Dexamethasone (a corticosteroid) and Thalidomide. Each of these brings down tumor levels by itself; together they bring levels down farther and faster than either does by itself. These brought my IgA level down from 4700 mg/dl to about 1000 mg/dl, still above the normal value of about 300 mg/dl.) The next step is to undergo a stem-cell transplant, which should put me in drug-free remission for a few years.

My Transplant Schedule: Preparations and stem-cell collection happened in May; check the diary below for details. I had an autologous transplant - that is, I was my own stem cell donor, so we collected my stem cells a couple of weeks before the hospitalization.

At the beginning of June, I checked into the Boston Brigham and Women's Hospital and started with two days of Melphalan chemo. This killed all of the cells in my bone marrow - cancer cells, stem cells, other immune system cells, everything. Then I got my previously-collected stem cells back in the form of a blood transfusion, and stayed in isolation for about three weeks while the stem cells gave rise to my new immune system. (Even though the procedure is called a "transplant", there's no surgery: the collection and implantation are done via blood transfusion. For more details, check out this website.)

Now I'm working my way back into the real world in two stages: First I stayed near the hospital and went to the DFCI clinic weekly for blood tests and meds. I was pretty tired at the beginning of this month but improved as the time passes. At the end of this stage (July 6, about two weeks post-release), I can move back home to the country and see my local doc in Concord for weekly blood tests and meds. Finally, sometime around the beginning of September, I can start going into the office one or two days a week and work my way back to full time over the next few weeks.

The diary is in reverse date order - the most recent entries are at the top. If you're looking for the latest entry, here it is. But, if you want to read my story from the beginning, you'll have to scroll (or click) all the way to the bottom and read up.

Also, PBSCT recipients (and I am one now) count the days post-transplant, so look for dates labeled, for example, Day +6.

New Neuropathy Regimen: Dana-Farber has revised their Neuropathy Regimen and courteously sent me a copy with permission to post, along with a comment sheet. You can view it here; your saved bookmark will automatically go to the new page.

I rode the 2006 Pan-Mass Challenge, my third year in a row, and did well, My complete remission continues. The folks at work don't cut me any slack for MM!

It's getting towards the end of summer 2005 and time to catch up on everything that's happened since last August, I guess. In late June and July, I had my two-year-anniversary medical tests: a BMB (Bone Marrow Biopsy), a skeletal survey (which is so many X-rays that I glow in the dark for two days), and flow cytometry (a very sensitive test for the abnormal blood proteins characteristic of MM). All show no signs of disease (phew!) so, once more, another year and CR continues apace.

If it's summer, it's time once again for the Pan-Mass Challenge. I've just finished riding, successfully for the second year in a row, giving me an accomplishment worth an update to this web blog so here it is. This page is long enough, so I've kept all of the PMC ride details to a page by themselves here. (These entries are in most-recent-first order so the link to my first PMC ride is in two paragraphs down so you didn't miss anything!)

Pure web stuff: We welcome my sister-in-law Susan Duckworth to our web server, with her own home page here.

On May 18, a bunch of us who met originally through the ACOR MM listserv got together at the Wayside Inn in Sudbury, Massachusetts for an informal dinner. Steve Weissburg sent a great description of our get-together to the listserv so I won't repeat it here, but the server can't handle pictures and I can, so here it is and here we are. From left to right we are Greg Robinson, Steve Weissburg, Deirdre Menoyo, Nancy and Jon Siegel, and Lee Casey. (Look for Steve's description in the ACOR archives for May 26, 2005.)

I probably first vowed to myself that I'd ride the Pan-Mass Challenge back before I was even scheduled for my PBSCT. No matter how early it was, this ride has been really important to me for over a year and now I've Done It!I not only entered and rode as you can see from the picture: I rode well and finished strong both days.

You can read my training story (the short version, anyhow) a few paragraphs down. The PMC gives you a choice of six routes (if you register really early; the best routes fill up quickly!). I chose to ride from Wellesley, MA to Provincetown over two days, listed as about 175 miles on the registration website but actually just over 166 by my bike's odometer. Of course you have to finish the ride to find that out!

The weather in eastern Massachusetts was perfect on the weekend of August 7-8. I left my bike at the ride start on Friday afternoon and stayed nearby overnight. At about 6:30 AM on Saturday morning, I joined the other 1,800 Wellesley riders and a few hundred volunteers as we stashed our duffel bags of luggage on trailer trucks and prepared our bikes and ourselves for a long day of riding. For the rest of the story, click here. You can still sponsor me; to contribute to the PMC for my ride, click here.

I know it's been a long time since my previous update last March, but I'm back to work full-time and no one's cutting me any slack around the office so life is pretty full. It's wonderful to be a regular person again, even though remission is not a cure. I'm hoping for a really long remission, of course!

June 3 was the one-year anniversary of my SCT or, as folks point out, the first birthday of my new immune system. Anniversaries are occasion for checking things out so, in late June, I had a BMB, flow cytometry, and skeletal survey done. All results came back negative for any signs of MM, so CR continues apace. Whew! First birthdays are occasion for something else too - I need to get all of my baby shots again. (Really!) I've postponed these until after the PMC (next paragraph), which isn't a time to be suffering from medical side effects. I'll arrange for these next week.

I've been training for the PMC, a cancer fund-raiser bicycle ride, since around April. I'll do 175 miles this weekend over two days, and the only way to enjoy it is to get into shape first. I was up to 60 miles (30 and 30) the weekend of June 12, and ramped up to 75 Sat/65 Sun the three weekends before the ride - that is, July 17/18, 24/25, and 31/1. I supplemented this schedule with a shorter, faster ride the middle of each week. I figure this puts me into decent shape to ride well. As of today, 2 days pre-ride, the weatherman predicts two perfect days: Temps in the low 70s, mostly sunny, gentle breezes. Not bad for New England! You can still sponsor me. See the links below. I'll try to post a post-ride report promptly, but no promises - I expect to be a bit tired when I get back.

Apologies for the long time between updates, but at least all the news is good (as those on the ACOR Multiple Myeloma listserv have known for months). I've just received word (by email; my doc is cool) that my tests this week, 9 months post-SCT, are negative for MM so my CR (complete remission; not a true cure) continues. I'm really busy my normal life both at work and at home so it's hard to update this blog very often and there isn't that much MM news anyhow, considering. (This is my MM diary; not a record of the rest of my personal life!)

I've registered to ride in the Pan-Mass Challenge, a bicycle ride to raise money for Cancer treatment and research. The organization has agreed to allocate all of the money I raise to Multiple Myeloma research at Dana-Farber Cancer Institute, so it's an even more personal effort for me. I'll ride from Wellesly, MA, to Provincetown, about 85 miles each day for two days (August 7-8, 2004). Click here to sponsor me in the ride.

My bloods show no M-spike or evidence of disease, as did my six-month BMB. So I'm in CR, back to work full time, and even traveling once or twice a month. So far, I've been to London twice, and to southern California, wherein lies a tale:

Dan Bammes, who runs his own MM diary website, had a PBSCT a few months after mine and the two of us have been communicating by email and telephone since, oh, early 2003 I guess (Dan, does that sound right to you?). In late 2003, I promised Dan that I'd stop by Salt Lake City on my next cross-country business trip and that happened today - Jan 30, 2004.

Here's a picture of the three of us (my wife Nancy came along) eating Buffalo burgers at Squatter's Pub Brewery in Salt Lake City. We had a great old time talking about transplants, lifestyles, getting back to work, and caretaker responsibilities and lifestyle changes, and lots of non-MM topics too.

How we got together: I worked a three-hour layover at SLC into Nancy's and my flight from Boston to Los Angeles. Dan met us at the airport and drove us to Squatter's, in town. We had plenty of time for food, conversation, and picture-taking before Dan drove us back to the airport and Nancy and I continued on to our business meeting in Anaheim, CA (yes, that would be Disneyland. If you're going to have a meeting, might as well get together someplace entertaining). You can read the other side of this same story and see a nearly identical picture at Dan's website (Yes, this is the same link as three paragraphs back).

The next day, Saturday, was our only full day off so we went to Disney's California Adventure Theme Park. Nancy and I both rode the California Soaring simulator ride and the Swinging Car Ferris Wheel, but I couldn't get her onto the California Screamer or the Maliboomer.

My medical leave ended with August and I went back to work full-time after Labor Day. I felt good and had enough energy to get through a work day without any trouble. Before MM, my usual start time (office work, remember!) was about 7:15 AM, allowing me to miss the traffic both ways; when I first started back I pushed this two hours later but by December I was back to my old early-rising self.

There wasn't a lot to write about (on MM, anyhow) so this entry is short and, I admit, written well after the fact. I had my six-month checkup at the end of December with a complete set of blood tests and the dreaded BMB (Bone Marrow Biopsy, for those of you who haven't participated); all results were negative for MM so Doc Richardson proclamed me to be in CR - Complete Remission. That's the best an MM patient can do; there's no cure yet.

I've been in to the office for a few more half-days, including yesterday and today. It all seems pretty normal, both to me and to the folks in the office. I've found a couple of worthwhile and necessary projects, so I'm not just wandering around looking for something to do.

Anyhow, this is the last week of my medical leave so in a few days I'll be back in the office full-time. I'll start Tuesday after Labor Day, and work almost my usual schedule. Before my leave and procedure, I was getting up at 5:15 AM to leave early and beat the rush-hour traffic but don't plan to go back to that rigorous schedule right away. I think leaving the house between 7:45 and 8:15 is good enough for now, and my boss agrees.

So - how long does it take to recover from a PBSCT and get back to work? I started back part-time on Day +65, about two months after Day 0 (I talk about going back part-time just a bit farther down this page), and will go back full-time around Day +91 - an even three months after my getting my stem cells back. I've read about people who have gone back much sooner (one example here), and others who have taken much longer to get their strength back. Some decide to take permanent disability and never go back to work, but these are people who typically (but not always) started out much worse off than I.

If you've been keeping up with my story using a low-speed telephone hookup to the Internet and waiting longer and longer for this page to download as it gets longer and longer, you'll be pleased to know that I'm working on a multi-page version. It won't be ready for a couple of weeks, but I'll make it worth the wait. I'll divide this diary into pages by topic (putting the story of my transplant onto a page of its own, for example), leaving the links to topical material in the text. In addition, I'll extract all of the references in the text onto a Links page grouped by subject, and add some that didn't fit into my story. This will give me a good place to link to my friends with Myeloma blogs of their own, including Dan Bammes and Beth Morgan.

I saw my local onc today for Zometa and blood tests, which came out OK. I admit, most of the values were a few tenths below last month but the docs expect this so I'm not going to fret about it. I have a lot of energy and don't see any reason to fret if the docs don't.

Dr. DuBois is very enthusiastic about my recovery, especially about how quickly I've gotten back to a pre-disease Quality Of Life and energy level, as well as my undetectable M-protein level. My IgA is the same as last time, and will probably go up which is OK: The body's normal IgA level is between about 80 and 350. As long as my M-protein is undetectable, it's all "good" IgA (as opposed to monoclonal IgA, produced by cancerous cells). Both docs say I'm in Remission. (It would be nicer if they called it "Complete remission" but it's too soon for that. There is no cure for MM, but remission is the next-best thing.)

I went in to the office today for the first time since the transplant, for a few hours anyhow. My doc said this was OK, no surprise since he's been allowing me to go to stores and places like that (at least when they're not crowded) and we're a small company with only 22 or so folks so it was just about the same thing at least as far as exposure is concerned.

Everyone was glad to see me, and surprised at how good I looked. Also at my lack of hair, and I will admit here in print (well, in electrons but it's about the same thing) that no one has yet told me that they miss my my pre-chemo hair style - everyone preferred the buzz cut that I wore it as I entered the hospital for the transplant, and all who see it now prefer my current dometop. I will also admit that I was thinking about changing my hair style when this cancer thing came along and forced the issue, but wasn't in any hurry - after all, the old style had worked OK (or so I thought) for 20+ years and could serve another few, at least. In a month or two I'll be able to grow my hair out, and it looks like I'll be picking a new style. With my record, perhaps I should let someone else do the picking!

So my visit to the office convinced everyone that I really am going to come back full time some day (in early or mid September, most likely). I spent some time with the people I work most closely with, going over stuff that I can do at home and send in over email. That will help me fill the time at home as I finish growing my new immune system and, since this visit didn't tire me out too badly, I'll probably try it again next week.

Today I got the results of the IgA measurement from the bloods taken on July 30 at Dana-Farber (previous entry, just below). My IgA came in at 53 mg/dl, below normal in contrast to the abnormally high readings I've had at and since diagnosis. This confirms that the chemo did, in fact, knock out most of the cancer cells in my bone marrow. Now we have to monitor my IgA levels to confirm that they don't come back as my new immune system matures. The true test will be a bone marrow biopsy at six months post-transplant which gives a look at the cancer cells themselves. Hopefully there won't be any, although the autologous SCT that I had is not a cure for MM. Still, today's is a delightful result!

It's been two weeks since I saw my local doc and had bloodwork done, and today I went in to Dana-Farber in Boston for a serious checkup. I got the regular blood counts almost instantly, but the IgA measurement (the one that really tells how much the transplant beat the cancer down) won't be done for a couple of days. I did get a hint from today's results, though: they include a value for total protein, and it's below normal. This means that my IgA (one component of the total protein) almost certainly has to be normal or lower too.

OK; so my WBC is down a touch from two weeks ago - at least it's all my own immune system's work, with no help from Neupogen (GCSF) since I haven't had any for three weeks. 5.1 is in the normal range anyhow so I don't have anything to worry about on the white side. And with my HCT at 40.6, I'm approaching the normal range listed for males on the red side too (values between 42 and 52) and many doctors would consider this value as normal enough not to worry about. I haven't had any Procrit for three weeks either, but its effects last longer than Neupogen so the improvement on the red side may still be Procrit-induced in spite of the time lapse. (My RBC and HGB values were much improved too.) I don't have to come back to DFCI for two months, but I'll see my local doc twice during that time for Zometa and blood tests so I'll be well-monitored in the interim.

The medical crew is pleased with my progress, and says I can relax some of the restrictions I've tolerated since the transplant - for instance, I can now eat thin-skinned fruits (apples, pears, berries) if they're well-washed and/or peeled (ever try to peel a blueberry?). Until now, only thick-skinned fruits were allowed. I'm sick of bananas! And I can stop cooking my roast beef and occasional steaks until they're dry, tough, and gray, and eat them with a little pink in the middle. (Anyone who has shared a restaurant meal with me before I got sick knows that I used to order my meat barely cooked at all!)

I'm still walking five or six days a week, but now on three or four of those days I cut the walk a bit short (two miles instead of three or four) and finish with a light workout. It's nothing like what I was doing before all this cancer stuff started, but I'll work my way back gradually. Fortunately my bones didn't suffer from the MM before it was diagnosed, and the Zometa that I take by IV every month keeps them from weakening now.

I've just gone over a week without seeing a doctor, and have another six days to go before my next appointment - feels pretty good. I've been walking every day, and even started some light exercise. Early in the week, I finished a short paper for some folks at the office, so I'm even starting to think outside the house here.

Also, I've noticed that my hair and beard start looking scruffy much quicker. When I was discharged, and for a few weeks after, I could go four or five days without shaving and even I couldn't notice anything growing on my head or face. Now the growth is noticeable even on the second day. Not great, of course - the few widely-spaced beard hairs make me look like a half-plucked chicken, but it's still more than I was growing a few weeks ago.

A few people will read this diary to find out how I'm doing, but others will read (and possibly study!) it because they, or someone they know (possibly closely) is about to undergo a PBSCT or similar procedure (mini-allo, for example) and they want to find out as much as they can beforehand - a worthy goal. Hopefully the links in this diary take it beyond just a story to a resource that these people can use to learn not only what it's like to undergo a stem cell transplant, but also to evaluate whether or not they need or want to have one. Just so you don't have to scroll back to the top of the page for the links, here they are again: You can read about Multiple Myeloma here or here, and about Peripheral Blood Stem Cell Transplant (PBSCT) here or here. Related info: Read about the difference between autologous and allogeneic transplants here, or about autologous transplants specifically here, and about mini-allo transplants here. Finally, the IMF's Transplant Handbook collects a lot of information about transplants in one handy place. I could have just linked to the handbook and left out the other links, but MM is such an individualized disease that no single reference - no matter how much it tries - can give you a true measure of the variability among patients, and how much your response to treatment may differ from what your oncologist predicts, or what you read on the web or in the medical literature. Finally, if you're an MM patient or caregiver, you should subscribe to the ACOR MM email discussion list.

For those folks, here's a paragraph about pace of recovery. Why? Because every entry from this one back to Day +11 dwells on my blood counts and why they're not rising faster (even though they're rising consistently, and my docs think they're rising plenty fast enough), and I don't want you to think that your counts will do the same because they won't: Every patient recovers at his/her own rate. Even though I produced and collected so many stem cells that it took an extra day to re-infuse them, my blood levels are recovering slower than the other transplant recipients that I compared them to. (I admit, my non-scientific sample has only two people in it. Still, both moved their blood values into the normal range weeks faster than I did.) On the other hand, my quality of life at and since discharge (and today is only Day +44) is much better than most folks that I know, and that I read about, so lab tests don't tell the whole story. MM attacks the bones - typically the long bones and spine - and kidneys, but I was fortunate to be diagnosed before I could suffer any damage to these important body parts!

So, no one can tell you exactly what to expect when you undergo a PBSCT. I'm not surprised to be active and alert at Day +44 since I was active before the procedure, but I also expected my blood values to shoot right up to normal as fast as the fastest other transplant recipients and that didn't happen. For my docs, it's the opposite: they aren't surprised that my blood counts are recovering slowly since my recovery time is within the range that they expect, but they are surprised that I'm so active and alert this early in my recovery.

That doesn't mean that each patient's experience is totally different from every other's - there's a basic pattern that repeats for each although some people may stretch or compress a step or two, or skip some (few get one of the opportune infections which may crop up while you're neutropenic, but those that do will never forget!). Everyone who has an autologous transplant undergoes a collection step although some patients collect months or years in advance and freeze their stem cells, while others (myself included) collect just before hospitalization.

OK - lesson's over for today. Back to the diary:

Today is the last of my weekly clinic visits - the docs think I'm in good enough shape to go two weeks without a blood test. They're probably right - my WBC has reached the low end of the normal range (which is 4.8-10.8 on my printout, but every lab defines the normal range for itselfs, it seems) as has my platelet count (221 today), although my reds still say I'm a trifle anemic.

Still, every reading is headed in the right direction and even the various red counts are getting close to the low end of their normal ranges so I feel pretty good about my recovery. I'm active most of the day (that is, I don't need the afternoon naps that interrupted my activity in the hospital and the first week or two of release) and I'm increasing the amount of mental activity (reading and writing, mostly) that I do each day.

I still have to avoid crowds and anyone with a cough or cold, but it's summer and that's pretty easy. We needed to go to the mall to pick up a teakettle to replace the grubby one that should have been history the day I came home, so we went early in the day when it wasn't crowded. I ask anyone who serves me if he/she has a cold, and that gets me through these adventure without mishap. I wear a disposable medical mask when a store is crowded and I just have to go in for something (typically a prescription or some other medical doohickey), but I mainly avoid crowds and shop without the mask. After all, I look weird enough in my hairless state that I don't need a mask to complete the look.

I've been home (as opposed to "out of the hospital but staying nearby" for a couple of days and just got back from my local onc's office where I had a CBC with good news: My red counts are all up, unlike last week when they went down slightly. My WBC and platelets were up too; WBC seems to be going up 0.4 every week, and platelets doubled to 131 which is almost low normal - they should be in the normal range next week. My docs weren't concerned about the anomalous drop in the red counts but I was; looks like they were right this time (as they have been every time) and I should have just relaxed and waited for the counts to come up instead of fretting so.

Our country road is a nice walk in itself but there's something even better at the end - one of many town conservation areas, with a trail through the woods past a beaver dam and up a hill. The deep woods stay cool for hours after the more open areas heat up on a summer's day, giving me a break when I don't get out as early as I intend (and it is July, remember, when even New England can get pretty warm!).

Today I moved home, from where I was staying with relatives near the Boston medical center. It's great to be back at my own house, in my own bed, and all that familiar stuff. Of course that didn't bring back my own head of hair or beard, but never mind - they'll come back in due time.

My older son and his wife came over, and we all ate supper together (with me doing my share of the cooking, of course), making the welcome complete. I'm not allowed to do any cleaning up (the dirty dishes might have cooties that my newly emerging immune system can't handle), so I just watched and made suggestions while the others took care of it.

I've been walking in the (relative) cool of each morning, and so far worked myself up from the very slow 2 miles on my first day post-release to a reasonably-paced 3 or 4 these past few days. I feel pretty good as I go and don't feel anemic although, it turns out, I still am. So I walked myself to the clinic today for my second post-release checkup. It's only a half mile from where I'm staying to the clinic, so I circled the park around Boston's "Muddy River" twice to add another 3 miles to the trip and still arrived early.

My WBC is going up steadily but slowly, to 2.7 from 2.4, and my platelet count jumped from 43 to 62 (still 'way below the normal range of 150 to 400 but any value above 50 prevents symptoms of slow clotting), so most of the trends are in the right direction. However, my Hematocrit dropped slightly from 28.8 to 28.1 and RBCs from 9.9 to 9.7 so anemia continues (in spite of the Procrit, by the way). I've got a theory and here it is: I'm staying with relatives near the medical center and we've been eating a lot of chicken and fish - great protein, but not red enough for me to build an RBC factory on. We're switching to red meat for at least two meals a day, and I'm adding a ferrous sulfate tablet to my daily regimen, and we'll look for better RBC numbers at my next checkup which is, as it turns out, in exactly a week.

Still, my DFCI doc thinks that these numbers are good enough that I can move from where I'm staying with relatives near the medical center, out to my country house with my family. I'll be able to drive, too, and so get around by myself - Hooray! It will take a few more days for my wife to finish cleaning and sterilizing everything (it's hard to keep things really clean in the country!) so I'll actually move back sometime over the 4th of July weekend.

If there's anything noteworthy about today's visit, it's how crowded the waiting area was at DFCI: Either more and more folks are switching to Dana-Farber, or cancer is becoming a much too popular disease. It was literally standing-room only - all of the chairs were full, and people were standing up around the perimeter of the waiting room. I'm supposed to avoid crowds, but I kept my medical mask and gloves on and (as of the day afterward) didn't catch anything that gave me any symptoms.

Today is my third day out of hospital and first checkup at the clinic. After watching my WBCs climb from 1.22 to 2.05 during the 24 hours before my release, I was hoping for a value in the 3's at this checkup but only made it to 2.4 as you can see opposite. Still, the movement is in the right direction and the best news is that, unlike many transplant recipients at their first checkup, I didn't need the transfusions of packed RBCs or platelets that would have been necessary if my counts had been lower in those categories. I did get shots today of GCSF (to build white cells) and Procrit (red cells - i.e. anti-anemia).

I've started a daily morning walk, even though this week is the first (and quite delayed) heat wave of the season. Yesterday was my first opportunity and I covered about 2 miles, v-e-r-y s-l-o-w-l-y. No opportunity today because of the clinic appointment. I'll resume tomorrow.

The nurse woke me up at 4:30 AM to take bloods so they could get a count early and order the platelets that will let the surgeon take out my Hickman catheter so I can go home. I got the first bag so early in the morning that I don't remember exactly when it was. Then they took another blood sample for a count that would confirm (or not, as it turned out) that my platelet level was high enough for the procedure.

Of course I wasn't, so around lunchtime another bag arrived and I spend 45 minutes or so getting transfused again. Even the surgeon squad was willing to accept that this bag put me over the limit, so they put me on their list and we started waiting for the knifeman to arrive.

Even the nurses (who appreciated how long I had been there!) were rooting for the surgeon to show up quickly so I could get out, but it didn't happen that way. I used some of the time after lunch to pack up the stuff that had accumulated over my three-plus week confinement: books, magazines, a few electronic gadgets, clothing (remember that I wore sweatsuits instead of hospital gowns), the get-well card collection that I had stuck to the wall with medical tape, and some leftover meds. Still, another couple of hours went by and no surgeon, so the nursing staff printed out my discharge instructions and reviewed them with me. With this done, I was ready to leave as soon as my catheter came out.

It was just after 4:00 PM that the surgeon showed up - actually a surgical physician's assistant with a helper. Although I was disappointed at first not to have a "real surgeon", I was pleased to learn that the assistants do virtually all the Hickman removals so this person was the one with the most experience - a true expert in Hickman removal. Sure enough, she did a great job of taking out the Hickman which was not a trivial task, for reasons that I will spare you.

So, around 5:30 when I was patched up and ready to go, we stacked my stuff on a wheelchair which a nursing assistant pushed along with us, and I walked out with my wife to the car which was driven by the relative I will stay with for the next two weeks. On the way out, we took this picture which you thought was I going in, but is actually I coming out. (That's why I'm wearing a hat. And yes, the preceding sentence is grammatically correct, however awkward-sounding. No apologies!)

On our way "home" (Yes, I didn't really go home but that's the best word to use here) we stopped at a Walgreen's where I, wearing respirator mask and medical gloves, filled my discharge prescriptions and picked up some bottled water and allowable snacks. (Remember, I'm still moderately neutropenic, so I need purified water and food that meets the requirements on my discharge instructions. It turns out that Dasani and Aqua Fina are purified and so allowed, but spring waters are neither purified nor allowed.)

When we got home, we supped on home-made stew (yes, Virginia, there is a way to cook meat to the required 160 degrees without turning it into leather), and I slept on a real bed.

As you can see by the even higher WBC over there on the left, I'm growing white cells just fine thanks, and the docs say I can go "home" (actually to a relative's place less than a half mile from the hospital and DFCI) tomorrow! I admit, the care and the nurses here are great, but you can only spend so much time in one room and 24 days is at least 20 (and possibly 24) too many. I'm ready to go!

They'll take out my Hickman catheter tomorrow before I'm discharged. (Hooray again! It's a drag to have a tube hanging out of your chest. Or your arm, for that matter, as I've done this two ways so far.) A surgeon put it in, and it will take a surgeon to pull it out, but the procedure will be done in my room. The commotion is that the surgeons require my platelet count be 50 or higher, and it's only 16 today. Looks like the last thing that passes through my Hickman will be the platelet transfusions that lets the surgeon take it out.

At 0.80, my WBC is reaching heights that I only dreamed about during the days when it was around or below 0.1. It's up from 0.52 yesterday, a jump of almost 0.3. And, with my POLYs at 68% and BANDs at 16%, my ANC is 672 - a value that will let me go home if it's the same or higher tomorrow. Hooray!

I admit, the value is higher because of the shot of Neupogen (GCSF) I received yesterday. This is the same white-cell-stimulating drug I injected myself with for the ten days prior to stem-cell collection. Still, the drug can't grow white cells if it doesn't have anything to work on, so my new immune system must be working since there's nothing left of the old one.

And, since I'm no longer severely neutropenic, my room is no longer on Isolation Level II - Now I'm on Level I, and my visitors don't have to wear masks when they come in. (Even though the nurses changed the sign on the door, most of the folks who come in, including the medical staff, don't look at it and just put masks on anyway. Oh, well.) I still have to wear a mask when I go outside into the corridor, and that's still as far as I'm allowed to stray until discharge.

Don't be fooled by the robust HCT value over there on the left - yesterday I was 25.8, below the magic 26.0, and got couple of bags of PRBCs. I'm not going to write about this again; you can click here to scroll down to June 12 and read about my first transfusion, if you've forgotten already. Use your back arrow to get right back here when you're done.

Then today my platelet count went below the magic 10 (in fact, it was 9) so, one day after getting the RBCs, I got a bag of platelets which raised my count to 25 a day later.

My white count is inching up, from 0.07 at its lowest to 0.49 today. That's still severely neutropenic, but it's seven times its lowest value so my new immune system must be doing something right, however slowly.

Before I started preparing for this transplant, I went over the steps with my medical team who gave me a calendar with significant days marked down. So far all of the notable events have occurred on their appointed days but that changed today: My calendar says that today - tentatively, of course, and dependent on my blood values - is the first day I might expect to be discharged. However, I am still severely neutropenic so that's not about to happen, unfortunately.

If you've followed the neutropenia link (and our thanks go to the Neutropenia Support Association of Winnipeg, Canada) and read through it (Bet you didn't think there would be a quiz!), you already know that neutropenia is defined by your Absolute Neutrophil Count (ANC): If your ANC is above 1500 you're OK; between 1000 and 1500 you're mildly neutropenic; 500 to 1000 and you're moderately neutropenic; and below 500 you're severely so. (These values are for Canadian neutrophils; for American neutrophils add 33%. Careful - that's a joke.)

Neutropenia is the reason I - and my fellow transplant recipients - stay confined to the special transplant unit, protected from infection, from the day the chemo destroys our immune system until our body rebuilds it from the just-in-time infusion of stem cells. With our low blood counts, we are sitting ducks for infection from not only bacteria and viruses, but fungus as well.

But hospital time is expensive, especially in the special SCT unit environment, so you only stay as long as you're severly neutropenic - once your ANC reaches the magic 500 and stays there for two days, assuming that you don't have an infection already, you're out (and glad to be released, let me assure you!).

However, you don't go back to the same home environment you're used to from before - still moderately neutropenic, you'd quickly pick up an infection and require strong antibiotics (at best) or another stay in the hospital (more likely). To prevent this (as much as possible), your transplant doctor or nurse will give your caregiver (wife, husband, whomever) a set of directions telling how to get your domicile hospital-clean (clorox the sinks and counters every day!), cook your food until it's sterile (Don't take that roast out of the oven until it's grey, dry, and tough as leather!), and raise your personal hygiene to unbelievable levels (Did you touch something? Wash your hands with antibacterial soap, and rub in a dab of hand sanitizer!). Looking ahead, I'll do this religiously for the first three or four weeks post-discharge, but then allow a little cheating once in a while as my counts rise and my immune system rebuilds itself.

One last thing - where does that magic ANC number come from? Unless your lab provides an extremely high level of service, this number will not appear on your blood count printout. (It might, though: One out of my collection of fifty or so printouts has the line "ABS NEUTROPHILS 1.19 K/UL". Convert this from thousands to units and it's 1,190 so, on the day that blood sample was drawn, I was mildly neutropenic.) So, most likely, you'll have to calculate this number yourself, just as my doctors and nurses did on the B&W transplant service. Here's how: Find your WBC, which is also in K/UL (thousands of cells per microliter). Some of these cells are neutrophils, and others aren't (they're other kinds of -phils, but we won't get into that here). Somewhere else on the printout (if your doctor ordered a differential blood count, and if you've waited long enough for the lab to prepare the slide and count the cells since this these numbers are prepared by people, not machines), you'll find a percentage of neutrophils. It may be labeled NEUTROPHILS with units of percent (%), or divided into components - my printout in the transplant unit showed the percentage of POLYS (mature neutrophils) and of BANDS (immature neutrophils), which I had to add together. Once you've found or calculated the percent of neutrophils, convert it to a fraction (so 45% would become 0.45, for example) and multiply it times your white cell count to get neutrophils/UL, the number you want (and that you want to be greater than 500, so you can go home).

Today, with my WBC at .22 K/UL, my ANC is about 150 - severely neutropenic and nowhere near high enough to go home, of course.

With my red counts all at acceptable levels thanks to the PRBCs I received two days ago, the blood component that dropped today was my platelets. (My white count is extremely low too, but WBCs don't last long enough to transfuse - you just have to make them yourself. I'm not doing that quite yet, of course, which is why I'm confined to a near-sterile room for the duration.)

My platelet count of 4 today, down from 13 yesterday, is well below the threshold of 10 which triggers a transfusion so that's what I got. The nurse swore that the bag contained platelets but it sure looked like orange juice to me (in fact, more like frozen than fresh). So I took my Benadryl, went to sleep, and let the platelets flow. The transfusion will raise my platelet count to 38 in tomorrow's lab result - a significant improvement.

My counts (both red and white) have been going down every day, and my HCT was so low this morning that I received two bags of packed red blood cells (PRBCs) to combat the severe anemia. Transplant unit guidelines call for PRBCs when your HCT falls below 26, and platelets when platelet count falls below 10. To prevent possible reaction, the nurse gave me 50 mg of Benadryl which put me right to sleep, so I missed watching most of the transfusion but the nurses said it wasn't very exciting anyhow. Some thought it was, if not exciting, at least worth monitoring closely.

Except for lunch today (which I slept right through, thanks to the Benadryl), I've been eating three meals a day. I gained about 20 pounds during the past year, mostly because of the high-dose steroids that form half of the Dexamethasone/Thalidomide combination that brought my tumor level down originally. I lost about half of the weight early in my stay when my stomach was queasy and my sense of taste was distorted, both of these effects due to the chemo. After a week or so I discovered that cold cereal and skim milk went down a lot easier than a cooked breakfast, even though an omelette and sausage looked better on the menu. Add a yogurt and it's a good start for the day. The "food" item whose taste distorts the most is plain old water, which tastes metallic. Ginger ale, on the other hand, goes down pretty well so I kept a stash in the mini-fridge in the room and a cupful on ice all day to meet my hydration requirements. (Did I forget to mention the fridge in the room? Some of the amenities, at least, are pretty cool.) Anyhow, once I figured out what went down OK and some of the queasiness stopped, so did the weight loss. That pleased the docs, but didn't help me fit into my old skinny pants when I finally got out and back home.

The nursing staff is what keeps the transplant unit running - the hospital has the good sense to keep the same nurses on the unit year after year, and they accumulate the knowledge to help the patients get through what is, after all, a grueling procedure (albeit not every minute, of course) in the best possible way. Besides being able to spot problems early, they know all of the tricks even for the little things.

So when your hair starts falling out, what do you do? Presumably you've already cut it short (as I had before I entered the hospital; you can page down to the buzz-cut pic or just click here if you forgot what that looked like), but now the little buzzies are falling out onto my pillowcase and filling my hat - yucko! So, the nurses say, wrap a piece of 2" adhesive tape around your fingers, sticky side out, and rub it over your head. It's the old cat-hair off the suit-coat trick, in a totally different context.

But I had my doc's permission to shave head and beard with an electric razor if I wanted to. (No blades - cuts and scratches would be dangerous at this stage, since I'm severely neutropenic - in fact, today is my second-to-lowest WBC. And the rules say it has to be a new shaver, or at least a new replacement head.) I've been shaving with a blade for decades and don't know anything about electric razors, but my wife has recently bought new electric razors for each of our sons and remembers what they like which was the Norelco Spectra (yes, the one James Bond uses. I hope you appreciate this link; it wasn't easy finding one with so much hype).

So here's a pic of me after my shave, debuting the new "dome look". I'll get a big red lollipop and do the Telly Savalas thing when I get a chance, but this will have to do for now. Am I the only person who liked my old Beatles-style haircut better than the buzz or dome? My in-person survey says yes. Damn!

Today - five days after infusion - is the earliest that my counts could bottom out, level off for another four or five days, and then start recovering, and one of my friends in another unit actually did keep this schedule. However, with the benefit of "future-sight" (that is, I'm filling in this diary several weeks after the fact - sorry to disillusion you!), I'll let on that my schedule lags this ideal by another four or five days. My docs say this is nothing to worry about; just part of the normal variation. Still, after collecting a near-record 13 million stem cells, I had expected to stay on the tip of the cusp and was disappointed when this didn't happen.

You have to make the time pass on your own in the transplant unit. There's a TV, to which you can add about 30 channels for $5/day but this doesn't include any premium channels like HBO or Showtime. It does include NESN (sorry; no link) so I was able to watch all of the Red Sox games. (Good thing, since I covered my shiny dome with a Red Sox hat and everyone, every day, checked with me to see how the team had fared the day before. It was first half of the season so they hadn't started their midsummer slump yet.) I had the hospital's paperperson deliver the New York Times (paper version, of course) to my room every day, and that was good for four hours on weekdays and six or more on Sunday. I brought a radio and MP3 player loaded with music from my classical CD collection, and my wife brought my magazines as they arrived in the mail: the Economist, Time, and Newsweek. I loaded a bunch of games onto my Palm, but ended up playing mostly Solitaire and Freecell. My family visited a lot, which helped both keep my spirits up and pass the time. All in all, time passed pretty well during the first two-thirds of my stay, but dragged during the last week when I was just waiting for my counts to get high enough to get out of the sterile environment.

It's been long enough since chemo and infusion that the immediate effects are fading away, but the longer-term consequences are replacing them and are impossible to ignore: My hair and beard are falling out at an increasing rate, and the effects on the lining of my mouth are producing mouth sores and distorting my sense of taste.

Because of the sores, mouth care is very important during the first few weeks post-chemo. The docs prescribe Mycelex troches to prevent - or at least minimize - the mouth sores, but the folks on the MM email discussion list suggest topical Vitamin E in addition. On my request, my docs prescribed a couple of Vitamin E capsules 3X/day. After each meal (except when I was too tired, which happened once in a while I admit) I swabbed my teeth with a "toothette" (basically a small rectangular sponge on the end of a lollipop stick), and then chomped down on two or three Vitamin E capsules to release the oil into my mouth, which I swished around to coat my tongue and the inside of my cheeks and the rest of my mouth. There's no way to know for sure if this helped minimize mouth sores, but I did have a relatively easy time of it compared to other folks who have gone through the same procedure.

My white counts are supposed to be headed down, but it seems that the stem cell infusion gave them a boost. But they'll drop tomorrow, and continue for a number of days.

Today is day +1 - all days are measured from the day you get your stem cells back. I felt a little better in the morning and progressively more chipper as the day went by. Even the third dose of stem cells didn't bother me much. The staff let me borrow a terminal and type an update to this web page and email it to one of my kids, who posted it. I was going to write occasional updates throughout the entire stay, but anemia foiled that plan and that one update turned out to be all I could manage for the month.

My hair is truly falling out - I look like a bird in the middle of a moult. My beard will be next. There's a pic at the Day +7 entry. You can either wait until you read up to it, or click here if you can't wait. Use your browser's "back" button to get back.

Outlook: I should stay pretty chipper for a day or two, and then go downhill along with my blood counts, through the end of the week and the weekend. Then a slow improvement until they let me out of the hospital.

Day 0 is supposed to be a good one, but it wasn't. I woke up queasy from the chemo and even a double dose of Ativan and Zofran (an anti-nausea drug) didn't clear me up. Then the stem cells showed up, preserved in DMSO which is quite a dose by itself. Because I had collected 13 million stem cells, I got them back in 3 separate infusions - two on Day 0 and the third on Day +1. The best I could do during Day 0 was lie down on the bed and let the fluids flow, and try not to whine or groan too loudly. I ended up sleeping from 2 PM on Day 0 afternoon until 9 AM of Day +1.

Today is the second of two days of Melphalan chemo. Today's dose came in the same tiny-sized bag as yesterday's, but the accumulated effects got to me and I felt progressively worse as time passed. By nightfall, I wasn't eating or drinking anything.

Today is the first of two days of Melphalan chemo. For such a big deal, it came in a tiny bag but I expect the effects will outsize the container.

I didn't feel that much from it, and ate well. Dessert was a cup of chocolate ice cream which went down OK and tasted normal.

Well, it's May 31 and time to leave for the hospital. I've just posted "I'm going on medical leave" notices on my voicemail message and email auto-responder at work, downloaded solitaire and freecell onto my Palm Pilot, and gathered the collection of books that I've been meaning to read for years. Looks like I'm as ready as I'll ever be, so here goes!

The transplant unit takes up floors 6 & 7 of Boston's Brigham and Women's Hospital. I was on floor 6 (and never found out what was on floor 7 - monsters, I guess). The entire floor is fed with HEPA-filtered air, and the rooms are higher pressure than the corridor to keep them free of bacteria, mold, and fungus spores. This protects transplant patients when they're neutropenic. Floor 6 is divided into four "pods" - A, B, C, and D (duh). I know four other people on the unit - two are on Pod B with me; the others are in other pods where I can't visit them (but my family can).

At the hospital, I stash my books and magazines by the bed, put my clean sweatsuits into drawers, and have my vital signs taken and bloods drawn the first of umpteen-gazillion times. (The hospital suggests wearing your own sweatsuits, at least after chemo and infusion completes on day 0, instead of the awkward and drafty hospital gowns. This is good advice! But you have to do your own laundry, or at least your family does, following the hospital's strict rules.)

The "mask and gloves" rule starts right away: In my (private) room, visitors (medical staff included) must wear hospital masks and gloves. I'm allowed to leave the room but only if I wear a respirator mask (paper, but better than the visitors' mask) and gloves, and I can only go into the corridor between the nurses' station and the rooms on the pod. This is Level 2 Isolation, which will continue as long as I'm neutropenic from the chemo - once my WBC counts go up, my visitors don't have to wear masks. This won't last long, though - it will also signal time to leave the hospital and go home!

After injecting myself with Neupogen for 10 days to stimulate white cell production and, therefore, stem cell proliferation, I went to Boston today for the first and, we hoped, only day of stem-cell collection. The day started with a CBC where my white cell count, as shown opposite, was a startling 73.8 vs. the normal 4.8 to 10.8. With this confirmation that the Neupogen was working, we expected a good harvest from today's procedure.

Four of us collectees filled about two-thirds of the beds in the harvest room and carried on a pretty lively conversation as we waited for the apheresis machines to filter the stem cells from our blood. The three men, myself included, all considered ourselves pretty serious cooks and this common interest made for an interesting conversation about recipes, ingredients, and cooking appliances. For a moment we considered the problem of chemotherapy deadening our taste buds, but decided to put it off until later. After all, the sense of taste will come back in a few months for all of us, unlike (for some of us) our hair.

At about 1:30 the nurse disconnected me from the machine and sent me home with a promise to call as soon as the lab had finished counting my stem cells. (I have this picture in my mind of a frazzled lab technician at a microscope mumbling "1,254,796 stem cells, 1,254,797 stem cells,...") If today's collection exceeds the minimum needed for the transplant, I won't have to return - otherwise, back again for another four hours with the apheresis machine. The anticipated call came at 7 PM: 13 million stem cells collected - a very large number, and many times the two million needed for a successful transplant. (Each clinic sets its own minimum - for example, some require four million. If you're about to have a collection, don't assume that two million will be enough in your case, even though is was in mine.) Whew!

It's been a week and a couple of days since I had the Cytoxan, and my hair will fall out in a couple of days or a week. (Then, a few months after my last chemo, it will grow back different.) To keep from losing big gobs of long hair on my pillow and wherever else, I had a buzz cut today. It was momentous if not exactly traumatic - I've had the same basic hair style for decades, and haven't had a truly short cut since the mid-1950s. Chances are, if the chemo hadn't forced the issue, I would have changed my hairstyle sometime soon anyway - enough's enough, after all. Here I am with short hair and, as a bonus, short hair and a hat: With the buzz cut, a hat doesn't look as awful as it used to.

By the way, that's not just any old NE Patriots Superbowl hat - I won it from a devout Rams fan in a bet. The hat wasn't even part of the bet - you can think of it as collateral damage. I'll write up the story and post it on its own page when I have the time (and the inspiration).

The Cytoxan shut down my white cell factory, but not totally. (That will happen during the transplant, in about two weeks.) As this week goes by, my white cell count wil go down because the normal replacement mechanism for these limited-lifetime cells has been clobbered. Sensing the low count, the white cell factory in my bone marrow will go into overtime aided by the Neupogen that I've been injecting into my thighs twice a day, stimulating white cell production directly. Some (millions, we hope) of the extra stem cells produced by this effort will spill out into my bloodstream where they will be harvested on May 27 and, if necessary, the few days following. (Thanks to Helen Volkema for help making this paragraph coherent!)

So the docs don't want me out in public in my weakened immune condition - no days in the office, trips to crowded malls or supermarkets, eating in restaurants, or anything else that might be considered "fun" (No business trips involving planes or hotels either). I do computer work (as you already know if you've read my professional page) so this week I've been working from home, interacting with the folks in the office via email and telephone. I've done this before but only for a day at a time; it's odd to go so long without seeing folks and I miss the office. I'll miss it even more in July and August, after two or three months away!

On Weds May 14, I went under the knife (melodrama unnecessary; it was truly minor surgery) to have a double lumen Hickman catheter inserted. The docs will use this on Friday to administer the Cytoxan to mobilize my stem cells, and later for stem cell collection. In the hospital, this will be used to administer the chemo, and to infuse the stem cells back, so it's a right handy piece of hardware.

I had my big infusion of Cytoxan on Fri May 16, to mobilize my stem cells for collection. Because my treatment has been Thal/Dex, this is the first actual chemo I've had and yes, my hair will start falling out in a week or two. For mobilization, I got nearly double the dose one would get in a continuing treatment so it was a long day because of the drugs that counter Cytoxan side effects: At 8 AM I started two hours of saline (2 liters), Benadryl (anti-nausea), Mesna (Mesna is not a miracle drug for genius dyslexics; it prevents bladder damage from the chemo drugs. Two good refs on it here and here) and other stuff, followed by the Cytoxan over another two hours. That filled up the morning; I actually finished a regular lunch (and kept it down!) before the afternoon doses of Mesna and whatever. I kept down my supper too, and at 7 PM the lab folks gave me an oral dose of Mesna to take home, four prescriptions for anti-nausea plus an antibiotic (since my immunity to infection will lessen over the next seven to ten days), told me to drink lots of water to lubricate my bladder, and let me go. Whew!

I saw Dr. DuBois today for my monthly dose of Zometa, and a chat about preps for my upcoming SCT. I'll come back to Emerson Hospital next week to have a double lumen Hickman catheter inserted. Details a few paragraphs up the page.

Today I took my last dose of dexamethasone, and in three days I'll stop taking Thalidomide, in preparation for the SCT. I'll be happy to be through with the sedative effect of the Thal - even though I can take it early in the evening and wake up at 5:30 AM, I can still tell feel a slight effect during most days. It will probably take a few days to get back to a normal sleep cycle, though!

I spent the day at DFCI going through pre-transplant tests and procedures and signing consent forms. The vampire (a nice lady, I admit) drew 22 tubes(!) of blood so I know these folks are serious about getting me ready for the transplant. I'll stop Thalidomide and Dexamethasone on May 9, and do the double dose of Cytoxan to mobilise my stem cells on May 16. Ten days of Neupogen injections follow, culminating in collection on May 27 through 29. This gives me one day off before hospital admission on May 31.

In hospital, I'll get Melphalan (chemo, for you non-cancer-buffs) on June 1 and 2, and get my stem cells back on June 3. This marks day 0, the start of my recovery. All future dates are measured from here! It takes two to four weeks to get enough of an immune system back to leave the hospital. I'll update when I get out.

We had some pix taken over the weekend to document what I look like with hair. (I'm not in most of the family pix, since I'm usually the one behind the camera.) Here I am with my wife Nancy. Yes, I'm 56 and this is my actual hair and its actual color, for now anyway. It will all be gone in a month, and in another six months or so it will grow back different. Stay tuned; I'll post a pic with the dome look and a third with whatever hair grows in. If it comes back white, I'll grow a long beard and moustache and wear a Santa Claus hat in December.

Pre-transplant tests today at Emerson hospital. I started with a standard EKG, followed by an echocardiogram. Then a skeletal series, which is so many Xrays that I glowed orange in the dimly-lit room between shots near the end of the session. The day concluded with a pulmonary function test - actually a series of tests which cover just about every aspect of your lungs and include some neat gas-transfer measurements.

Today I saw Dr Richardson today for my regular appointment. He's pleased with my progress and all test results. DuBois reported that the slides from the BMB last Thursday showed 10% plasma cells, 'way down from the 30% to 50% on the sample taken in August 2002 when I was diagnosed. (That biopsy didn't get a good sample, so the slides showed differing percents of plasma cells. We'll never know what the true amount was.) Since normal marrow has 5% plasma cells, the 10% is a pretty good number. This is still a conditional result - DuBois is not a pathologist. We'll get the pathologist's reading soon so stay tuned.

I'll come back in two weeks to tour the transplant unit, meet some of the people who will treat me, and sign consent forms.

With less than 2 months to go before PBSCT, my docs want to run a lot of tests to make sure I'm in good shape for the procedure. Besides my usual dose of Zometa this week, I came back a few days after for a bone marrow biopsy. Dr Dubois is a lot better at this than the bozo who did my original test at a little country hospital last August.

I'll come back again soon for a skeletal series, pulmonary function test, echocardiogram, and EKG.