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Live Blogging (well, sort of) from the D-F

Posted by Frederick Wasti
Mar 19 2013

[Definition of the verb "live·blog" - "To write or maintain a blog about an event as the event is happening."]

It is about 8:45 AM on Monday, 3/18/2013, and Diane and I are sitting in the waiting area on Yawkey 2 (that's the Yawkey Center for Cancer Care at the Dana-Farber Cancer Institute). Yawkey 2 is where "Laboratory Services" is located, which is a euphemism for "the place where they poke holes into an arm or hand", in order to drain some blood out for testing each time, and today (this happens only once every other month now) also leave a "line" sticking out of my arm or hand to infuse some "goodies" to keep me sort of "non-leukemic".

[Please note that most of this blog entry was composed while at the Dana-Farber, but that I edited it and added to it at home on the day after the D-F visit, so it's "sort of" like live-blogging.]

We got to Boston quite easily this morning. We generally leave two hours before my first appointment here (the time of which varies all the time), but we made it to D-F in just slightly longer than an hour, which was unusual (and surprising) for a Monday morning. We found out just a few minutes ago (while waiting for blood to be drawn for testing) that this was due to today being Evacuation Day (a.k.a. Bunker Hill Day) in Boston - I guess a lot of people (and their cars) evacuated Boston today (not unlike the British Redcoats back in 1776) - <grin>.

As an aside, "Evacuation Day" is a better name for the holiday than "Bunker Hill Day" anyhow, since Boston celebrates it on March 17th (or, if that date falls on a weekend, on the following Monday), and the British did evacuate Boston (for Nova Scotia) on March 17th of 1776. In contrast, the so-called "Battle of Bunker Hill" was fought primarily on nearby Breed's Hill, on a day in June in 1775 (the 17th), and Bunker Hill was only peripherally involved in the actual battle anyway.

Furthermore, while the Battle of Breed's Hill was an important battle, it ultimately was a loss for the Continental Army (although the British Redcoats did pay a high price in casualties to claim their Pyrrhic victory), and the eventual evacuation of the British from Boston on March 17th of 1776 was much more significant -- it was the first victory of the Revolutionary War for the Continental Army, and, on that day, Boston became the first city to be liberated from the King's soldiers, and it therefore became a tremendous morale booster for the fledgling Thirteen American Colonies.

Thus, Evacuation Day is a far better day for Boston to celebrate (although the Luck-o'-the-Irish coincidence that St Paddy's Day, which had been celebrated with parades in Boston starting in the late 1800's, also fell on March 17th, may have lent strong impetus to the Evacuation Day holiday being officially recognized in Boston around the turn of the 20th Century).

But I digress...

OK, so we had plenty of time after getting to D-F today to have coffee (Diane) or cereal and lots of hydrating pre-poking liquids (Fred) in the large cafeteria on Yawkey 3. As were the roads heading into Boston, and the streets of Dorchester and Roxbury between the Expressway and D-F, the cafeteria seemed less busy than usual. And, since we had plenty of time, we spent a few minutes in the "Healing Garden" area on Y2, checking out the current lineup of plants there (which vary somewhat seasonally) - today there were lots and lots of orchids, to go along with the "usual greenery" (of bamboo, ornamental banana plants, grape vines, etc.)

A special feature always in the garden is a collection of air plants (which still amaze me that can live without their roots being in soil or water). It is generally quite quiet and peaceful there, with pleasant piped-in nature sounds (except for the last time we were there, when there was a young woman using her cell phone within the garden, despite the ~obvious~ signs to not do so on the door on the way in - But I digress...).

Ordinarily, except on those infrequent occasions when we have to go over to the Dana Building for a CT scan, we get to spend our entire time at D-F going up and down in the Yawkey Building -- we leave our car in the Yawkey basement valet parking area, go to "Lab Services" on "Y2", eat on "Y3", and spend some time on "Y8", where the blood cancer infusion area and examination rooms are located, before returning to the basement to receive our car back.

A pretty good YouTube video, about 90 seconds long, highlighting the Yawkey Center building, is at http://www.youtube.com/watch?v=NwuYuUbtGN8, and another short video, with some coverage of the Healing Garden, is at http://www.youtube.com/watch?v=9crlKkvwC4M.

So, as I am typing this (on my laptop PC, which I usually bring to D-F for diversion), we have finally arrived at Y8, waiting for me to be weighed in and to get my other vital signs recorded, before receiving my pre-meds (oral Tylenol and Benadryl, and an infusion of 50 mg of Methylprednisolone), followed by an injection of Alemtuzumab, and finally a long (4 hours or so) infusion of Ofatumumab. The waiting area here on Y8 is fairly empty today, as were the roads, the cafeteria, and the Healing Garden, but surprisingly this was not true for the "Lab Services" waiting area today, which seemed surprisingly quite full of eager (<grin>) "blood donors".

I am wearing a mask over my mouth and nose today, as I have been doing each day we've been to D-F since I developed pneumonia back at Christmas time. I now put on a mask as soon as we enter the building - there are dispensers for masks and gloves on each floor (at least all the floors I've been on) near the elevators. I take the mask off inside the infusion area, but, having realized that the elevators and the waiting areas in a hospital are really ~not~ the safest places to be if one is trying to avoid infections, and, not wishing to contract pneumonia again, I wear a mask now in all of the D-F common areas. Oh, and one other exception is for eating and drinking in the "caf", both of which are a bit easier to accomplish if I temporarily remove the mask first.

I just had my vital signs taken - 97.4 degrees for my oral body temperature (which is nearly always below the so-called "normal" 98.6 temp), 97% oxygen (it's usually 97% or 98%), BP of 126 over 79 (thanks to the miracle of chemistry), and a favorable weight (gee, I "forgot" - <cough-cough> - just what the scale read, but I will mention that the weight is 23 pounds less than it was earlier in the clinical trial, back in the spring). (Anyways, hospital scales are known for always reading rather high, right?)

Actually, I really haven't lost weight, per se - it's just that D-F has likely taken 23 pounds of blood from me over the course of the trial - <grin>. Today I had five tubes drawn - three (one big and two little tubes) on Y2, and then two more "study tubes" (one big and one little) drawn on Y8. Five tubes is a bit more than I typically have to provide - it's usually "only" three - but five tubes are a lot less than I had to provide back on "screening day" last March, when I "donated" ~24~ (I think it was) tubes of blood.

And, speaking of March, this is just about my "clinical trial anniversary" -- "screening day" for the trial was back on March 14, 2012, while my first treatment day (which I suppose would be considered the actual the first day of the trial) was on March 21, 2012. It seems hard to believe, but I've been a D-F lab rat for just about a year now. And, indeed, what a year it has been...

Shortly after getting to my infusion chair, after having my vital signs recorded, my protocol nurse, Karen Francoeur, stopped by. I see her on many of the times I am at D-F. Since I am doing well, cruising along with my every-other-week schedule, the conversation was light and friendly, since there really isn't anything that required serious discussion at the moment.

There are a number of medical people that are directly involved with my particular case, although I likely am not fully aware of all of the distinctions between the various people I deal with at D-F, but here's a bit of a "roll call" (which should perhaps be called a "role call" in this particular case):

To start with, first there is my hematologist-oncologist doctor, David Fisher (pictured above), who, besides being a lymphoma and CLL specialist at D-F, is an Assistant Professor of Medicine at Harvard Medical School, and who certainly must be considered my principal medical adviser. Then there is my nurse practitioner, Michele Walsh, who works with Dr. Fisher, and who is the number one contact for my overall medical care (since, while I see Dr. Fisher only occasionally, I see Michele nearly every time I visit D-F). It is Michele who asks specific questions about my condition each visit, judges my overall state each time (and ~always~ listens to my lungs by stethoscope - "clear as a bell"). As it turns out, I am scheduled to see Dr. Fisher instead of Michele the next time I am at D-F, in a couple of weeks from now.

While I specifically am Dr. Fisher's patient, there is another doctor at D-F, Jennifer Brown, who would not be considered to be my personal physician, but who does make certain critical decisions which direct my path throughout the clinical trial, since she is the Principal Investigator for the trial. (Dr. Brown does have some patients of her own, but she is a clinician only part-time, since she is involved in research much of the time each week as well.) Then, as I understand it, my protocol nurse, Karen Francoeur, reports to Dr. Brown, and she is the one most involved in coordinating between Dr. Brown and the specific details of my own clinical trial participation.

Finally (and this is ~certainly~ in the "last but not least" category), there is my all-important infusion nurse, Melissa Houston, who administers all of my meds when I visit D-F, and with whom I have the most direct contact, hour by hour, during the time I am on Y8.

However, each day I visit D-F, there are many other people I have contact with, both medically and otherwise, and I have to say that all of them seem to be professionals in their own particular roles (such as the parking valets shown below).

I really should single out one of these various non-Y8 people, and that would be Jean Epps, a phlebotomist. Nearly every time I visit D-F I have blood drawn for testing. While this sometimes occurs on Y8, most of the time it takes place in the Y2 "Lab Services" area, where there are quite a few RN's and phlebotomists, ready to draw patients' blood. Basically, if a patient has a port, or needs an infusion line put in place, then he/she has to be scheduled for one of the RN's, who can also do a blood draw for testing, if needed. On the other hand, if a patient "just" needs blood drawn for testing, and there is no port involved or no need for an infusion line, then he/she would be scheduled for one of the phlebotomists. Ordinarily, upon checking in at Y2, each patient is classified into one category or the other, and then just waits until he/she is called in turn by the next available RN or phlebotomist (as appropriate).

Now, the main problem for me in providing blood (and this has been a problem as far back as I can remember) is that most of the surface veins in my arms are rather small - unfortunately, nearly all the good ones are deeper. So, for years now, whether I was donating blood to the Red Cross (which I understandably am now prohibited from doing due to my leukemia), or providing blood for blood testing, or having an infusion line put in at a hospital, I have had two "go-to" veins, situated at mirror image locations on the inside of each of my forearms, close to the crook of each elbow. One vein (the one on the right side) has been better than the other one, and a Red Cross RN remarked years ago that I should have a tattoo of an arrow pointing to the good vein to make it easy to find - <grin>.

However, and unfortunately, both of these veins are starting to become considerably less useful. Whether it's due to scar tissue due to being poked so many times, or whether it's due to the sometimes locally corrosive action of medications, I really don't know - it's probably a combination of these factors that has been at play. And that's where Jean Epps comes in:

Many times when I had blood drawn on Y2 at D-F, I started with one of the randomly assigned phlebotomists, when I would end up being poked once without success, and then poked once again without success, and would have to be turned over to another vampire, er, another phlebotomist - D-F has a rule that two pokes is the most any one poker can try, and then it's time for someone else to try. I noticed that more than once it was suggested that Jean Epps should give it a try, since I had such crummy veins. Well, I figured out that, since I was often going to end up with Jean in the end anyway, I might as well start with her - so now, when I check in on Y2 (unless it's one of the days when I need an infusion line installed by an RN), I specifically ask for Jean Epps, and, while I think this occasionally makes for a longer wait before I get poked, it's well worth it - Jean usually (although not always) can get blood out of me with just one poke.

Hmmm... Actually, I now see that I was wrong about one of the pre-meds, all but one of which I have just been given - instead of receiving 25 mg of Benadryl by pill (which is what I receive most days during Part C), today Melissa gave me 50 mg of the stuff intravenously (since today is an "Ofa day", and that's what the protocol specifies for Ofatumumab pre-medication). And, I can tell that the Benadryl is starting to kick in right now - I'll have to stop here for a while, since I am now starting to type not in English but in Gibberish, an myee shpeech has nowwoo beecome shlurred (moore dan you-shoe-aaal - <gwin>)...

Z-Z-Z-Z-Z-Z-Z...

More Z-Z-Z-Z-Z-Z-Z...

OK, well, now I'm back. Sort of, anyway. I'm still "a bit" groggy, but I'm starting to return from SleepyTown now...

My little nap was interrupted a few times, once when my empty Benadryl bag was disconnected from my arm, replaced with 50 mg of Methylprednisolone; another time when Michele Walsh, my nurse practitioner arrived to see how I am doing today (and it's a good thing that Diane was here, so that at least one of us was conscious for the discussion with her); and once more when my empty Methylprednisolone bag was replaced with the start of the Ofatumumab infusion (so it's "T minus four hours and counting"...).

Michele brought the printouts from today's lab tests, and everything still looks good. I have to say that it certainly is gratifying to see that being treated once every two weeks is enough to keep my blood test numbers all at their own individual plateaus. Having gotten my numbers to where my CLL seems to have beaten way down, it is nice to see that it seems to be staying down, at least so far. (Now, if I only didn't have to have traded in my immune system in order to accomplish that...)

Now it's lunchtime. (Actually, as I am typing this, it's now just after lunchtime, since I chose to eat instead of type when lunch arrived.) At D-F, a couple of volunteers push a cart around with sandwiches, fruit cups, snacks, and drinks in the middle of each day to the Y8 blood cancer infusion area (and I assume that there might be more than a pair of volunteers to cover all of the floors, since there are other infusion areas on other floors for other cancers). I usually end up with a cold cheese sandwich, which is often the only non-animal choice available.

The Ofatumumab infusion seems to be coming along OK. I receive 1,000 ml of saline, containing 1,000 mg of Ofatumumab, and it does take a while to get it all into my body. The infusion pump starts out slowly at first, to give the body a chance to adjust to the Ofa, and then the infusion nurse periodically will increase the rate at which the Ofa enters my bloodstream. For example, just a few minutes ago (at about 1:45 PM), the nurse upped the rate to 400 ml per hour, so I'm practically mainlining the drug right now. However, the bag is still over half full, since the infusion had started so slowly at first, and I still have another couple of hours or so to go.

Well, now it's about 3:30, and the infusion bag is looking close to depleted, so I'll be packing up my laptop, and I'll have to finish tweaking this blog entry at home. Diane will be driving home today - I usually drive in to Boston in the AM, while Diane usually drives going home (since I'm usually pretty medicated by the time we leave D-F). Here's hoping that the traffic will still be light...

[OK, now it is Tuesday, 3/19/2013, and I'll be editing what I composed at D-F and also adding the conclusion of this post below.]

The ride going home was not so easy as was the ride this morning. Traffic was probably somewhat lighter than what a typical Monday late afternoon commute would be, but it was not as hassle-free as it was for us earlier. Oh well - at least we're going in the right direction.

I will not post updated graphs that include today's test results - they look about the same as the graphs from two weeks ago, and I've used up enough bandwidth for this blog entry with the D-F YouTube images already - <grin>.

So, we carry on, not knowing what the future will hold (which, when you think of it, will always have to involve uncertainty), but we are encouraged by how the present seems to be transpiring...

 

Categories: Leukemia

Compartmentalization

Posted by Frederick Wasti
Mar 13 2013

Hello again. I am "back on the air" again, so to speak, after a long absence from blogging, for which I apologize.

So, "What happened to February?" you ask. Yes, it's been a long while since I've put a blog entry online - in fact, I totally skipped over February. (In my defense, February ~is~ the shortest month - <sheepish_grin>.) It's actually good news that I really didn't have anything significant to share (although admittedly that's not very helpful to the reader).

The truth is that Part C of my clinical trial, with its greatly reduced treatments (once every two weeks, as compared to the three treatments per week grind of Part B), has allowed me to put CLL "on the back burner" (again, so to speak). Oh sure, I still have to take medications multiple times each and every day, but that amounts mostly to a routine responsibility that does seem relatively disconnected from the disease itself.

Merriam-Webster's Dictionary defines the verb "compartmentalize" as "to separate into isolated compartments or categories", and provides, as an example, "He compartmentalizes his life by keeping his job and his personal life separate.". In psychological terms: "Compartmentalization is an unconscious psychological defense mechanism used to avoid cognitive dissonance, or the mental discomfort and anxiety caused by a person's having conflicting values, cognitions, emotions, beliefs, etc., within themselves. Compartmentalization allows these conflicting ideas to co-exist by inhibiting direct or explicit acknowledgment and interaction between separate compartmentalized self states." Uh-huh.

I guess what I am trying to say is that I ~may~ have been subconsciously putting off updating the blog as a defensive mechanism. Perhaps. Dunno. (?) Actually, there have been several days over the past few weeks where I ~did~ intend to compose a blog entry, but I then got bogged down in reading up on the latest research news (and the news as of late ~is~ encouraging, even exciting sometimes, and I will share some of that soon - I promise), and in the end I never got around to putting any blog post online. (And, by the way, when I checked out a few of the other "CLL patient" blogs recently, I did find a couple of them that had lengthy periods of inactivity during which the blogger had probably been compartmentalizing, and had to end up apologizing for the scarcity of entries when he/she finally did resume posting again.)

 

Therefore, while I am trying to explain why I may have been so tardy in updating this blog, I still do have to apologize for leaving my own blog's readers (all two or three of you - <grin>) in the lurch, wondering how I am doing - I am indeed sorry for that.

So, in response to the question, "So, just how is Fred doing lately anyway?", I can answer, "Quite well, thank you", because I am indeed doing very well (under the circumstances). In fact, at the last visit to Dana-Farber (two Mondays ago), Michele Walsh (my nurse practitioner, who sees me nearly every time I am at D-F) pointed out that, if I had just had a "regular doctor's exam", with routine blood testing (which ordinarily would not have included a differential count of the various types of white blood cells), the doctor would have found my blood to be quite normal:

In a much earlier blog entry, "Blood Cells 101", I stated: "Red blood cells normally make up over 99% of the cells in blood, and there normally are about 5,000,000 or so per cubic millimeter. White blood cells are of approximately the same general size range as the far more numerous red cells, but there are normally 'only' about 5,000 to 10,000 per cubic millimeter, Platelets are much smaller than either red or white cells, and are intermediate in quantity, there being typically about 300,000 per cubic millimeter."

Well, my most recent blood test results (again, from two Mondays ago, but other recent results have been similar) showed my red cell count to be 4.64 million per cubic milliliter, certainly well withing the normal range of 4.2-5.6 (the normal range routinely provided for comparison on the D-F blood test printout). Similarly (and perhaps more importantly), my white cells measured at 6.3 thousand per cubic milliliter, which is also well within the normal range of 3.8-9.2 thousand (D-F) or "5,000 to 10,000" (from above). And my platelet count, which has often been quite low as a result of CLL, measured at 168 thousand per microliter, which is still a bit low, but is still (admittedly barely) within the normal range of 155-410 (D-F).

Looking at my total white cell count over time, ...

...it can be seen that it has come down greatly from where it was at the beginning of the trial, and that it has been close to or within the normal range for quite a few months now.

Of course, the routine blood testing from a "regular doctor's exam" would not have included a differential white cell count, which ~is~ routinely performed nearly every time I visit D-F, and which shows that the proportion of neutrophils and lymphocytes are currently being (intentionally) maintained at very lopsided proportions:

Considering that neutrophils normally should make up about 49% to 79% of the white cells, and that lymphocytes usually should make up about 11% to 38% of the white cells (these are the D-F normal ranges), it can be seen from the above graph that my own proportions were "way out of whack" back when treatment began, then were probably within those proper ranges for a short time last spring, but have since been (intentionally) kept "way out of whack" in the opposite direction (as my treatments every two weeks are designed to keep my lymphocyte count very, very low, as Alemtuzumab and Ofatumumab have been trying to catch and destroy as many leukemic lymphocytes as possible).

As for how I am ~feeling~, well, I'm doing quite well. I sometimes feel a bit "subdued" after treatment, sometimes for a day or two but not always. My stamina does vary a bit from day to day, but I do feel quite well most of the time. Furthermore, with the exception of that pesky pneumonia I had for a Christmas present, I have not had any serious infections, despite the fact that my immune system has been greatly compromised for a long time now. Of course, that's why I have been taking anti-bacterial, anti-viral, and anti-fungal medications each and every day (twice each day for the anti-bacterial and anti-viral meds, and three times a day for the anti-fungal).

I still have a long-term battle with the seborrheic dermatitis affecting my face, but even that seems to be somewhat less of a problem now (requiring less frequent topical anti-fungal and steroid treatments to maintain "my good looks" - <grin>). The arthritis in my fingers and in my right hip have flared up again very recently, but I had mostly been doing pretty well with those problems over the last month or so, overall.

So, how am I doing? Well, I would say that, all things considered, I'm doing ~OK~. And, you can quote me on that.

Well, that's all for now from Fred. I ~will~ try to get back to blogging a little more frequently - I promise. (Really.) Thank you for your patience in the meantime, my dear readers.

 

Categories: Leukemia