Bum's Rush

Now that I am so much improved, it seems as though the IPOP clinic team can scarcely contain its enthusiasm for getting me out of town. After seeing today's very good counts, I was presented with the following plan: I will be given tomorrow (Friday) "off", meaning no going in to have blood drawn for tests, and then no waiting around to see if any IVs are required based on the results. Saturday will be a more normal day, with the usual testing procedures; but Sunday I will be off again. On Monday, I will lose my catheter; after that, I will have nothing scheduled until the formal check-out training on Thursday, after which I will be free to go home. I will be expected to return for a follow-up visit in sixty days.

One question that may have occurred to the reader has also occurred to yours truly: After all this tormented maneuvering, is the cancer gone now? That was the point of it all, wasn't it? And If the cancer isn't gone gone, then how much is left, how dangerous is it, and what must be done now to further treat it? Surprisingly, no one at Hopkins is prepared to address any of these questions at this point at time; they are being hand-waved off to the sixty-day follow-up. It will be interesting to see how the Christiana oncologist responds to these queries.

Back To Out-Patient

This afternoon I was discharged from the cancer center's in-patient unit. After more than 72 hours, I am finally untethered from the IV pumps. The only remaining symptom that I continue to struggle with is the occasional episode of nausea.

My blood cell counts are all back in the normal ranges, in some cases even higher than that. Partly this is due to the injections of growth factor (Neupogen) that I have been getting for several days; these have now been stopped, so we can expect that the counts will dip (but not crash, as before) over the next couple of days. The stem cells are supposed to pick up the slack and finally return the counts to normal, once and for all. Assuming that happens, and that I don't get sick again in the interim, the stem cell transplant team will declare final victory, and discharge me to go home, probably in another week or so. I would formally return to the jurisdiction of the good old Christiana oncologist, whose responsibility I would once again become.

A Difficult Few Days

I am writing this from my bed in Room 14 of the 5B module of the Weinberg Building. I have been here since I was admitted as an inpatient at 8 P.M. Christmas (Friday) night. It was decided to convert me to an inpatient for several reasons. First, I was running a fever of 101 F degrees. I was continuing to battle waves of nausea; acute mucositis that made swallowing anything, even liquids, very painful; and diarrhea that I could not control (I was involuntarily soiling my clothing and bed linens).

Since then, I have been continuously tethered to an IV poll with two Omni-Flow machines running concurrently, with up to eight bags being fed into my catheter at once. I have long since lost track of the array of medications that have been used to treat me. I have been getting fluids and glucose continuously, since I have been unable to keep myself fed and watered in the face of my symptoms. I have also gotten a few bags of red blood and platelets, since those counts got very low.

In addition to the usual blood tests, I have had urine and stool cultures (all negative), a chest X-ray, and CT scans of my sinuses and lungs (nothing amiss).

At this point (Sunday night), I have no fever, and the nausea and mucositis are substantially diminished in their effects. Only the diarrhea remains problematic; I will learn more about the plan for addressing this in tomorrow morning's meeting with the physician team. The really good news is that my white blood cell counts are finally beginning to rise at a fairly rapid pace. This is a very good sign that the stem cell transplant actually worked, which of course was the point of this entire exercise in the first place.

A Long Day In IPOP

Today's 10 A.M. appointment at the IPOP clinic did not come to an end until after 5 P.M. I have been experiencing some shortness of breath on exertion the last couple of days; this was accounted for by steadily declining red blood cell counts. Today's count was sufficiently low to trigger a decision to give me a couple of units of blood. There is nothing unusual about this, but it is a first for me. I have been donating blood for 30 or more years, but I have never before been on the receiving end of the transaction, at least as far as I can recall.

It took some time to round up the units, and then each one took two hours to drip in; I was meanwhile closely watched for signs of an adverse reaction (typically a skin rash or hives, or a fever), which did not appear, and my vitals were checked half-hourly.

I noticed the enhancement to my energy level even on my walk back to the apartment. Of course the hope now is that the transplanted stem cells will soon begin to get to work manufacturing the red blood cells I require.

Struggling Forward

My blood cell counts are striking bottom pretty much on schedule. Over the next few days, they should begin to recover, aided in part by the daily injections of Neupogen that were commenced on Monday.

Meanwhile, some of the side effects have intensified. My original anti-nausea drug, prochlorparazine, was not doing much good, so now we are trying ondansetron again. Due to some mucositis in the throat and esophagus, plus diarrhea, I am having trouble keeping myself properly hydrated, so I have been getting IVs for this in the IPOP clinic each day. For all of the above reasons, I'm also having trouble finding things I can eat and keep down, so I'm losing weight.

On the bright side, so far there has been no hint of fever, or anything else that would indicate that I have any kind of infection requiring that I be IVed with an antibiotic/antiviral/antifungal.

Struggling With The Side Effects

As predicted, I am coping with a collection of side effects of the transplant. The main symptom is fatigue; I don't seem to be able to sleep enough, and I have been sleeping quite a bit. I have to force myself to get up and walk around a bit, for exercise. Brief waves of nausea break over me at unpredictable moments. My appetite is poor, as many foods seem to have a vaguely metallic background taste that I find off-putting. That, plus some esophageal discomfort, causes me to prefer relatively weak liquids, or foods that are on the lighter side, such as soup or fruit.

Then there is the loss of hair. I am beginning to regret my decision to get just a buzz cut, instead of having my head shaved. Even with short hair, there is a lot of it, filling my bed and clothing and towels and clogging the shower drain. I am reminded of the character in the "Peanuts" comic strip -- named "Pig-Pen", I believe -- who moved through the world in a cloud of dust and grime and clutter. I am moving through the world in a cloud of falling hair.

Based on the daily blood tests, so far I have not had to have anything special done to me in the IPOP clinic. We are watching the blood cell counts continue to drop; they still have further to go before they begin to bounce back.

Meanwhile, of course, Huong is watching over me like a mother hawk over her chicks, so never fear. Her main adversary would seem to be boredom; perhaps the big snowstorm that is approaching will provide a bit of a diversion. It's supposed to give us 18-24 inches of snow by early Sunday, here in the city.

Stem Cells Transplanted

After battling against insomnia again last night, I had to fight off a couple of brief waves of nausea this morning. I was previously armed with the anti-nausea drug prochlorperazine to use if needed, so I have resorted to that.

When we arrived at the IPOP clinic for my 10 A.M. appointment, we were informed that the transplant would not begin until noon; so after having blood drawn as usual, we went home.

At noon I was first set up with IVs of Zofran (for nausea) and Benadryl (to defend against a possible reaction against the preservative used for the stem cells). The latter made me extremely foggy. The frozen stem cells were brought out and defrosted in a warm water bath. The two large bags I had seen taken away at the end of the apheresis procedure had been reduced to just two small bags of straw-colored liquid. It took only about twenty minutes for them to go in. I was topped off with the inevitable saline flush. I was kept for an additional two hours, as my "vitals" were taken each half hour, to watch for any bad reactions, which did not happen in my case. We returned home by around 4 P.M. I left the IPOP clinic with a taste in my mouth resembling that of garlic, which will continue for a couple of days.

Writing this post is taking somewhat more effort than usual, as I am experiencing a great deal of fatigue, and my stomach is a bit unsettled. I am just getting started coming to terms with all the new medications. I have a feeling that the next few days are going to be challenging.

Melphalan: Round Two

Today's IPOP clinic session was nearly identical to yesterday's: Zophran, dexamethasone, melphalan, saline. The only difference was that today the nurse cultured the catheter entrance wound in response to Huong's concerns about the color of the immediately surrounding skin. We'll find out the results tomorrow.

All of the really nasty stuff is now in. Tomorrow, the recovery begins, as I get my stem cells back, and we all hold our breath waiting for them to wander back to the bone marrow and begin manufacturing blood cells again.

I did have one side effect as a result of yesterday's chemo: insomnia. I had trouble getting to sleep last night, in spite of the day's vigorous exercise; and woke up several times, having more trouble returning to sleep each time. I'm hoping against a repeat performance tonight.

Speaking of vigorous exercise, we once again set out on a long afternoon walk, this time to the Inner Harbor, about 1-1/4 miles each way. This time, though, I became very tired on the return leg, and we wound up taking a cab home. Once again our route took us past a self-styled patisserie, but this one turned out not to produce baguettes at all. Sob.

I have been given a battery of new drugs that I am to begin taking tomorrow: Avelox (an antibiotic), Fluconazole (an antifungal), and Valacyclovir (an antiviral). This last one is especially important, because many stem cell transplant patients come down with bad cases of shingles or oral cold sores or both. Meanwhile, I am supposed to stop taking the allopurinol, since we will not be killing any more cancer cells.

Melphalan: Round One

After all the fuss I made over it, today's chemotherapy session is going to sound anti-climactic. We arrived at 10 A.M., and after getting blood drawn for the inevitable battery of tests, I was connected to the IV machine, and dosed with (you guessed it) dexamethasone and Zofran (ondansetron). Once these had gone in, the nurse once again donned the protective clothing and gloves, in order to handle the bag of melphalan. This took a mere twenty minutes to go in. Finally I was topped off with a bit of saline flush, and then turned loose. We returned home by about 12:30 P.M.

I think I forgot to mention that, for the IVs, the IPOP clinic uses the Hospira Omni-Flow 4000 Plus. This machine can multiplex up to four inputs (bags or syringes) onto a single output tube going to one of my catheter lumens. Each input can be independently controlled in terms of flow rate, the conditions on which it alarms, etc.

So far (knock wood) I don't seem to be feeling any negative effects; of course I expect this to change sooner or later. But this afternoon, the weather was so fine, and I felt so strong, that we undertook a major walking expedition. We walked about a mile south to the Fells Point neighborhood, in search of French bread. The walk was challenging for me, requiring navigation along broken concrete or cobblestone sidewalks, and to negotiate busy intersections. In addition, in one direction the route is fairly steep downhill, so of course the return is uphill. Our plan was that I would walk as far as I could, and then if I ran out of steam, we would resort to a cab. That didn't turn out to be necessary, though; I was able to make the entire journey on foot.

We have been conducting Internet-based research on such topics as the locations of Baltimore-area grocery stores (Asian markets in particular), and bakeries purporting to produce baguettes (the bread type, not the diamond type). Huong has pretty exacting standards for baguettes; common failures are crusts that are insufficiently crispy, or hearts that are too doughy. Chances are good that the "artisanal" baguettes found in the bakery section of your local upscale supermarket are failures on one or both counts. Today we were targeting an ersatz patisserie in Fells Point said to have baguettes; it did, but the crusts were not quite crispy enough. We bought one anyway. We also took a break over coffees and croissants; I was thus sufficiently fortified for the return walk.

Crossing the Rubicon

Tomorrow I will descend into a tunnel of unknown length and darkness. I can turn aside from my present course at any time up until 10 A.M. Monday; I can finally reject the oncologists' advice, go home, and consume only green tea, fish oil, and flax seed, or whatever is the favored alternative cancer cure of the moment. But once the poison begins to drip into my catheter, there is truly no turning back; my immune system will begin to die, and then only the stem cells extracted last week can save me.

There is no way to predict exactly what is going to happen next. It is possible that at some point I will become incapable of updating this blog; in that case, I may ask Huong to take over temporarily.

No matter how well or badly things go, what is certain is that I must be kept substantially in isolation from the outside world for some time. Since Huong will be responsible for monitoring my state 24/7, she will share this isolation to a large degree. Her home caregiver role, once virtually ignored by the medical establishment, has gained increasing attention in recent years, especially as increasing proportions of the bone marrow and stem cell transplant procedures have been shifted from inpatient to outpatient, thereby making the outcomes increasingly dependent on the performance of the patients' caregivers. And what has become apparent is that, in many ways, the caregiver's role is more difficult than that even of the patient. In addition to dealing with a person who is in pain and to some degree incapable, the caregiver must continue to carry out all the standard functions required to keep a household running. Many caregivers are overwhelmed by this combination of burdens; many turn out to require treatment for depression at some point.

One thing that seems to help is reassurance that the caregiver has not been forgotten by the members of her support group. Although physical contact may be problematic, contact by phone or e-mail can go a long way towards helping a caregiver to maintain the necessary level of psychic energy; e-mail might be more convenient, since it can be processed at the caregiver's convenience, but the sound of a human voice has its own particular palliative effects. If you consider yourself a member of Huong's network, I would ask you to remember her in the coming weeks. I understand that this will be more difficult than it ordinarily would be, coming as it does during the busy holiday period, which is why I am broadcasting this annoying reminder here and now.

A Lull In The Action

Now that my stem cells have been harvested there is no longer any need to get to the IPOP clinic for tests so early in the morning. Today's appointment was for 11:30 A.M., so we were able to sleep in for a change. The tests showed nothing amiss, so we were dismissed around 2 P.M. Our next appointment at the IPOP clinic isn't until 10 A.M. Monday, so we have returned to Avondale for a couple of days; there are always things that need to be done there.

There is also no need, for now, for either Neupogen or Cipro, so these have been dropped from my roster of medications. I know that Neupogen at least will make another appearance after the stem cell re-infusion; I'm not sure about Cipro.

On Monday, the two-day assault with melphalan begins, followed by the re-infusion on Wednesday; it's likely to be a pretty tough week.

Stem Cells Harvested

This past Sunday and Monday my white blood cell counts were bouncing along the bottom, so I was dismissed from IPOP pretty early both days. But by Tuesday they had recovered substantially, so even though I was still not ready and was again sent home early, I received a phone call from one of the IPOP nurses early in the afternoon warning me that there was a significant possibility that the harvest could take place Wednesday, if the trend continued. I was instructed to prepare myself for a longer day.

Sure enough, by 9 A.M. Wednesday morning I was hitched to the apheresis machine. Both lumens of my catheter were fully engaged, and I was getting a very strong saline solution added to the return leg -- strong enough to cause an unpleasant metallic taste in my mouth. Obviously a machine like this does many things automatically, but the nurse running the show still had a great deal to do for the three-and-a-half hours the procedure lasted. For starters, shortly after getting the machine started, she announced that she was unhappy with the outbound flow rate; this was remedied by pausing the machine and switching all the tubing between the two lumens. As the machine did its work, she made adjustments to certain of its parameters. Every thirty minutes, she took blood from a branch on the outbound leg and sent it off for analysis, to make sure the cell counts and certain other numbers continued to be satisfactory. She measured and recorded my "vitals" (body temperature, blood pressure, heart rate, and dissolved oxygen) nearly as frequently. When I began to feel cold, as often happens in the course of this procedure, she covered me up. When I began to feel some tingling in the ends of my fingers, she backed off the outbound flow rate a couple of percent. She kept me supplied with drinks and cookies. And when the saline solution and drinks eventually filled my bladder, which happened a couple of times, she took care of that as well (and that's all I'm going to say about that).

Eventually time passed and the procedure completed; the "product" was declared to be of top quality. This consisted of a bag of straw-colored plasma, and another bag of blood colored a dull dark red. This second bag consisted mostly of stem cells, but also some red blood cells and platelets that had escaped the machine's filtration mechanism. Before being frozen, the contents of this bag would have to undergo a second round of filtration, which I did not observe.

Often apheresis costs the patient enough platelets that it is necessary to wind up with a blood transfusion to replace them, so I had to hang around and wait for the results of the last set of tests to determine whether this should be done in my case. Fortunately my only problem turned out to be a potassium deficiency; I was given a few pills to take and was sent home. So, unless I have some sort of delayed bad reaction overnight to something or other, I would have to say that the stem cell harvest went about as well as could be hoped.

First Week of Mobilization

This past week has consisted mainly of watching the fatigue and (thankfully mild) nausea caused by the big hit of Cytoxan recede, and watching the anticipated side effects of the daily shots of Neupogen not take their place. These were headlined by bone pain; supposedly, in some patients this can be bad enough to require the administration of substantial quantities of pain relievers. I experienced some fleeting pangs in some of the joints of my fingers and in my knees, but otherwise nothing that I would have noticed were it not for the fact that I was consciously watching for it. So once again I can count myself fortunate in the area of side effects. Huong has been doing a fabulous job of flushing my catheter, changing the dressings left by the operation, and shooting me up with Neupogen.

On Thursday I began taking Cipro, a "broad spectrum" antibiotic, to defend against the danger of neutropenia. For the same reason, I am supposed to undertake a variety of additional precautions. In public places, I must wear an N95 respirator mask, which is substantially more effective than ordinary disposable surgical masks. I must temporarily cease flossing my teeth, to avoid allowing infections to enter via bleeding gums. And I have to wash my hands every time I turn around.

On Friday we returned to Baltimore and took up residence in an apartment in the cancer center's temporary housing facility. The advantages of this option versus the Tremont Hotel consist in its proximity to the cancer center (right across the street), and the fact that it has complete in-room kitchen and laundry facilities.

Today we began what will probably be the routine for at least the next several days. We appeared in the IPOP clinic at 7:30 A.M., where I had blood drawn; then we hung around for a couple of hours while a couple of dozen tests were run. Mainly, the team is looking at my blood cell counts daily, until they indicate that there are enough stem cells in my bloodstream to begin harvesting them. Unless they do, or unless there is some deficiency that must be remediated by hooking me up to an IV, I am then dismissed for the rest of the day.

There now, I'm finally caught up to the present.

After-Action Report: 11/26 - 11/29

Still trying to catch up to the present, before I begin to forget things.

Thursday 11/26: We were at home for Thanksgiving Day, and of course nothing happened, medically speaking. I enjoyed a relaxing evening with a small company of family and friends, and I was able to forget my troubles for a few hours. I drank a bit of wine, since I will soon be chafing under a six-month alcohol ban. After dinner a birthday cake appeared, and I was serenaded by the assemblage in the traditional fashion. I was also given the gift of an Amazon Kindle, which should cut down on the clutter of reading material I would otherwise have to drag along with me, to make the long sessions in the Hopkins IPOP clinic bearable. Thanks to all who contributed to the cost of the purchase.

Because of the next day's procedure at Hopkins, I was subject to a midnight cutoff of any consumption of food or drink. Also, for the same reason, I had been given a set of large antibiotic wipes, which I was expected to use to clean myself from the neck down, both before going to bed, and then again upon rising.

Friday 11/27: We drove back to Baltimore in the morning for the only significant activity of the day, which was to have my catheter installed. Once again I was required to sign a small pile of consents, after which I was conducted into a small operating room. I was given what I believe is called conscious sedation, or twilight anesthesia, meaning that I was not completely unconscious, but experienced no pain. I could hear and comprehend the surgeon's warnings: "...a little stick here... some pressure now... more pressure...". Eventually I found myself in a recovery room with tubes sticking out from under a dressing on my upper right breast, but not much the worse for wear. By early evening we were back in the Tremont Hotel, in exactly the same room as before. The only lingering effect was fatigue, which along with the next day's early IPOP clinic appointment, sent me to bed early.

Saturday 11/28: On my official stem cell transplant calendar, this was Day 0 of my treatment. By 7:45 A.M. I was in a "private" IPOP cubical, measuring perhaps seven feet square, with a curtain providing the "privacy"; and I was attached to an IV machine that was pumping a saline solution into me. The key stem cell mobilization drug, Cytoxan, is in fact a powerful and dangerous chemotherapeutic agent in its own right -- so dangerous, in fact, that the nurse handling it had to wear special protective clothing and gloves, and I had to be given a collection of protective substances both before and after receiving it. I was given the saline solution for a couple of hours before the two-hour Cytoxan IV was itself begun, and for several more hours after it completed. Meanwhile, I was also given mesna, to protect the inner lining of my bladder from being irritated by the Cytoxan once it had been processed by the kidneys; ondansetron, to combat nausea; and, lo and behold, my old friend dexamethasone, for reasons that remain mysterious. At some point some blood tests were run, and I was found to be low on potassium, and sure enough a bag of some potassium compound in solution was added to the array being dripped into me. By the time the entire process was completed, it was well past 6 P.M., and I was quite bloated around the mid-section; I was told to take an extra dose of furosemide for this before bedtime, so as to lose more of the fluid overnight. Back at the Tremont, I began to feel the nausea coming on, and very nearly lost it after taking my evening medications, but managed to keep everything down in the end.

Sunday 11/29: We checked out of the Tremont before noon, and made our 12:30 P.M. IPOP appointment. Blood tests indicated no need for me to be hooked up to any more IVs, so after getting my first subcutaneous shots of Neupogen, we left Baltimore once again. We were given enough Neupogen to last until we return at the end of the week; I must get shots of it daily while at home. It is meant to stimulate the production of white blood cells, and their movement out of the bone marrow. I was still feeling mildly nauseated by the Cytoxan, so I was also given several doses of ondansetron to tide me over for the next couple of days, until it could be completely processed out. Other than that, my only continuing problem was fatigue, for which the only remedy was rest.

After-Action Report: 11/23 - 11/25

My apologies for not keeping up with the blog. I have been prevented from updating it recently for a variety of reasons; I won't go into these in any detail, preferring instead to devote what little energy I have right now to providing an abbreviated play-by-play of the past week or so, in several installments. So, without further ado:

Monday 11/23: I spent much of the morning on the phone with someone who is going to handle my application for Social Security Administration disability benefits. I am required to do this by the LTD insurance company currently covering me; but this company has in turn hired another company that specializes in navigating the shoals and bayous of the SSA's application process, which can evidently take five or six months. The first half of the afternoon was taken up by a pretty good physical therapy session.

Tuesday 11/24: Another physical therapy session in late morning to early afternoon. As soon as I returned home, I received a call from the Hopkins transplant coordinator, saying that the oncologist was troubled by some irregularity in my EKG. She wanted me to see a cardiologist down there about this on Wednesday, instead of following the established schedule. Doing this would be mildly catastrophic, since it would alter the entire schedule, pushing everything back; this would of course involve a lot of work. I proposed that she instead fax the troublesome EKG to my local cardiologist, and I would make an attempt (admittedly very unlikely to meet with success) to see him that same afternoon. By some miracle, a cancellation had opened up a 3:00 P.M. appointment. When I arrived, the cardiologist was ready for me; he hand-waved the Hopkins EKG, saying that it was identical to the one he had taken in August. In any case, he saw nothing about it that would justify delaying the transplant. He faxed a note to this effect to Hopkins before COB, thus rescuing the transplant schedule. A major bullet dodged.

Wednesday 11/25: Arriving at Hopkins at 1:30 P.M., we received training around my catheter: how to flush the lumens with Heparin, how to replace the caps; and how to change the dressing around the surgical wound. We also practiced the sub-cutaneous growth factor injections I will be giving myself at home. Finally, we met with the "attending oncologist" -- the oncologist who will actually run the show -- to sign the consents. This again reminded me of a real estate closing, in terms of the number of forms to be signed. This oncologist felt obliged to inform me of Hopkins' 95% survival rate for stem cell transplants. The remaining 5% of course makes more precise the chief oncologist's description of the chances of a fatality as being "not zero". For the return home, we joined the Thanksgiving Holiday Weekend parade on I-95, which turned out to be not nearly the nightmare we were fearing.