Autologous Bone Marrow
Harvest
Saved from a painful ordeal, we left for Boston with high hopes, all the phone
numbers I could think I'd need , and my internet address book. We took
with us a good feeling that we were on our way to accomplishing this major
goal working with a very special group of people, and a wonderfully caring
MD in charge. (Now is the time to blush, John).
After spending a delightful week-end with our son, Neal, and his lovely Marjorie, we
visited DFCI once more. On Monday, June 9th, I had blood work drawn at
DFCI, had a constructive meeting with Dr. Gribben, consulted with the radiation
team, viewed the radiation set-up (two induction units, one above the
sailcloth table and one under it so all that's missing is the rotisserie
and spit!) and took care of unfinished tests before harvest on June 12th.
Wednesday, I had a lung block x-ray, that was used to make lead shields
for my lungs while I undergo total body irradiation. A computer was used
to enable the MD's to place the blocks in just the right places so as not
to irradiate too much of the lungs.
That afternoon,
we visited the BMT unit (one of four such units with ten rooms each)--rooms
twenty by eleven, wedge shaped, complete with bathroom and a shower and
real flush toilet. The entire unit was positive air filtered. So after entering
the double set of airlock doors, the air was well enough filtered that patients
could walk around the unit masked and gloved. Visitors were welcome--hands
washed, masked, and gloved. This was much more liveable than what I was
facing previously.
Thursday was harvest day. Brigham and
Women Hospital's admitting office demanded my presence at the Brigham and
Women's at 6:00 AM and you all know that I don't do mornings well at all!
So on auto pilot we arrived, went to admitting, and discovered that someone
had screwed up the paperwork and was considering my secondary coverage
as my primary coverage, so the harvest wasn't approved. I knew I couldn't
go through that insurance horror again without totally losing it, so I
was grateful when the admissions person looked back into the computer and
found the correct information with approval. Yes, the insurance company
had approved the harvest finally. Can you imagine how I would have
felt if I'd been put through that whole scenario again?
The ambulatory operating room at the
Brigham is a huge rabbit warren and I was taken to a bed on the very far
end of the room. The anesthesiologist was very thorough in his explanations,
and when he sensed from my questions that I was really interested, he explained
all the drugs that would be used. I warned him that I was difficult to
intubate and gave him the medic alert information that a previous anesthesiologist
had written. In that light, we decided to do a spinal instead of general
anesthesia.....until Dr. Vance, one of the two surgeons who worked on me doing the
bone marrow harvest, said that he really preferred that we go with general because it was likely
to be a longer operation than originally anticipated. So I went off to
never-never-land and was harvested. One doctor worked on one hip, one doctor worked on the
other, and like the team the are, they were vieing with one another to see who did the
neatest job, whose hurt less, etc. Being a diplomat, I said they both hurt
equally. So I have six small scars on my upper rump on both sides and
the harvest was complete and successful. Yippee!
I spent the night in hospital and late
that afternoon two jubilant doctors paid me a hilarious visit. "Harvest
was successful and there is enough material to do two BMTs." Dr.
Gribben announced. Dr. Vance looked equally delighted.
"Thanks so much," I said, "but
I'll settle for one successful one!"
There was a small amount of pain on the
day of harvest, but I was up and walking the mall the next day. I felt
the holes in my hip when getting into a cab, sitting down quickly, and for several days
afterwards when I slept on my back, but that's not a big deal at all. A
week later they itched as they healed.
Subsequently, they returned to my body all
the leftover blood they had removed after selecting out the cells
for purging. Then they did blood work, and my hematocrit was still low,
so they gave me 2 units of irradiated blood (the only kind BMT patients
may have). They also informed me that they had found gobs of yellow gunk
on the tube used to intubate me, so they cultured it. Results were normal.
I also gave them a sputum culture which came up normal. So even though
I sounded like a barking seal, everyone agreed that there was nothing untoward
there. It's my theory that CLL migrates into different parts of the body.
Sometimes it affects the central nervous system, sometimes it affects the
joints, but with me it infiltrated the sinuses. I'd been coughing like
this since last August, it sounded horrible, and it was making me nuts!
Then we had a week of freedom--to find
permanent lodgings away from home. We looked at The Family Inn and Shannon's
House which are inexpensive communal homes; but Irv wanted maid service,
private bath and telephone, so we settled on the Howard Johnson's at Fenway
with special rates for patients and a van running from the motel to the
hospital. The manager was particularly kind and let me hook up my laptop to the net
using his direct line.
There was lots of pollen in the air
on Monday, and it really got to me. Coughing worse than usual, I contacted
Dr. Gribben, who prescribed an additional antibiotic and some Robitussen
with codeine. Tuesday and Wednesday I stayed mostly indoors and was back
to normal, but Dr.G wanted a final reevaluation on Thursday. That was a
very nerve-wracking night. Were we going to go, or were we going to have
to waste another week until they understood that I wasn't going to stop coughing or get
better? Neither Irv nor I had much sleep that night.
Thursday came, as it inexorably does,
and with it the visit to Dr. Gribben. I was really worried that he'd listen
to my barking and fear for the rest of the patients in the bmt unit. Instead,
we discussed insurance--they still hadn't received approval from my company.
I said I'd call Strategic Health and Benefits Plan Administrators myself.
(When I reached individuals at each of those companies, I was assured that I was indeed
approved.) Andrea, of BPA, made it a point to say that I had met all the
requirements of our plan. She said any argument between BPA and the TPA (third party payer)
was not my problem, but would be resolved by the school district and BPA.
Strategic Health was only concerned with how many days I'd be in hospital,
but otherwise they had also approved.
The second part of the meeting was a request
that I permit doctors from the Infectious Diseases (ID) section to see
me. Of course, I agreed. As a result of that meeting, I had clearance from
ID to go ahead. As icing on this cake, Dr. Gribben sent me to visit "respiratory".
There I was treated to a nasal wash --unpleasant for a moment, but the
results made the discomfort worth it. The mucosa collected in the
wash was cultured for virus diseases. With all that, still nothing turned
up. Oh Blessings! I was cleared for take off and the BMT conditioning went
forward on Friday.
Because
I was in Boston, I was fortunate to have some wonderful internet friends
available. David Feingold, who has long been my mentor and source of information
had us to dinner and then went out of his way to take us "out to play"
the day before I entered the isolation unit. He wouldn't even let us buy
him dinner! Gary Moon, 1 year post BMT for AML, member of the committee
to enhance the Dana Farber/Brigham and Women BMT Partnership, went fishing
on the cape and picked Irv and me up one hot day, took the historic route
to his home in Concord so we could rubberneck, and then cooked us the most
delicious striped bass and Boston bluefish dinner. Thanks also to his lovely
wife Gisella for sharing her grandmother's recipe for noodles, brown sugar
and cottage cheese!
The
International Myeloma Association meeting was taking place at the Westin
at Copley Square, so I went over to meet Hem-Onc co-owner June Brazil.
Would you believe that we'd run the Hem-Onc list together for over a year
and a half, had talked on the phone dozens of times, but had never met?
June introduced me to Mike Katz, with whom I'd had many email conversations,
but whom I'd also never met. Finally, I had lunch with Laurel Simmons of
the BMT-Talk list, who is as lovely as she is kind. I can't let this
paragraph end without expressing my eternal gratitude to John A. Kaminski,
a net friend I've never physically met, who generously provided me with
local internet access by way of ULTRANET. In every instance, meeting these
people was just like resuming a conversation with old, valued friends.
The trust and caring was already there, and all we had to do was to add
the flesh to the photograph. I welcome any other internet old friends from
the Boston area who would wish to come say Hello, to come see me at Brigham
and Women's Hospital while I'm learning how to live again.
In-patient--The Adventure
of a Lifetime!
Bloodwork information for the period of the story covering my stay in the BMT unit
Finally
it was Friday. The phone hadn't rung telling us that it was all off, so
we presented ourselves at the Brigham at 6:00 AM for admitting. This time
the procedure went smoothly and I was down on Level 1 for insertion of
the Hickman before you could say "anesthesia". Using something
called monitored anesthesia, the doc had me very comfortable and wheeled
me into the operating room. This was one of the modern ones, and I was
fascinated by all the lights, gadgets, and other accoutrements I saw. I
don't recall the local being administered, and I know that I had a double
entry double lumen Hickman, but don't ask me for details....the Versed
saw to that!
Next
step was the move up to the isolation unit, where I was greeted by charming
nurses and no bed.... When it finally arrived, I settled into my new home.
Love the refrigerator, but miss the computer table. I'm writing
this on the bedside food table, not the most comfortable place in the world,
but it does the job! Thank heaven I could now say farewell to erratic network
hook-ups--I was connected.
I was constantly
amazed at how patient centered this BMT unit was. If I needed something it
almost miraculously appeared. All my nurses, appeared to know what I'd
be wanting before I even had to ask. This surely made me appreciate
their experience and expertise. Chrissy, Barbara, and the rest of the BMT
nursing team. I salute you. I appreciate you. You are wonderful!
Saturday
morning rolled around very early. Vital signs (temperature, pulse,
respiration) were run at 5:30. We know I'm a growling bear that
early in the AM. By 7:30, Christine, my day nurse, had arrived, rolling
scale in tow, to take weight and height. (Thereafter they recorded weight
daily.) .
As BMT days are counted, Friday was -1 (minus
one) when I had my Hickman venous catheter installed.
Day -2, Saturday, I faced high dose cytoxan with saline
hydration, and zofran to prevent nausea. Then benedryl and ativan (two other
antiemetics, ). I had a reaction to the cytoxan that made my carotid artery
stop up. We tried tylenol and 4 mg. morphine and ice packs on my cheeks
but I still looked like "Charlie the Chipmunk." Laurel Simmons,
Marie Cote, son Neal and Marjorie, and husband Irv were here to do the honors.
I was more compos then mentis, I think! As always, the phone rang incessantly,
and I did feel loved by you all. The reaction disappeared as fast as it came,
and with it went my morphine virginity..... I don't have too many kinds of
virginity left!
Monday was day -3 and the start of total body
irradiation (TBI). Now that was an experience! I was asked to empty my bladder,
and then plopped into a blanketed wheelchair wearing hospital robe, slippers,
and an assortment of additional blankets. I also wore a heavy duty white
mask provided by the hospital. I was whisked, in a specially chosen elevator,
to the radiation department where specially personalized lung blocks were taped to my front
and back. Then I lay on the radiation table, made of sail cloth, in only
the robe and lung blocks for twenty minutes. No pain, no problems, good classical music and then
I was whisked upstairs to the unit again until the next time.
Tuesday, day -4 I awoke with a fever of 102.
I was dosed with tylenol and the fever responded by dropping down to 101.2. They gave
me TBI as usual in the AM. I didn't know quite how I felt about early mummification,
but I couldn't say it was bad and the classical music to which I listened
was delightful. By this day I was taking oral acyclovir, (also known
as zovirax) 400 megs, and ofloxicillin 10 mgs. The first is an antiviral
and the last is an antibiotic. This time, too, I received an extra dose of 50mgs. hydrocortisone
and benadryl.
David stopped by for an early visit, and Irv
came with me to radiation, so I had supporters out there. That afternoon
I had not only the TBI that was scheduled for me, but they also did a chest
X ray. Frankly, I knew my cough sounded horrible, but it hadn't gone into
my lungs since August, so why they were so concerned that it would do that
now was beyond my fathoming. Nevertheless, I'm not a doctor and I agreed
to do what was asked of me. I suppose an ounce of prevention was a pound
of cure in their minds.
On Day -5 I woke after a dreadful night of
diarrhea and urinal incontinence, to discover that I still had a fever
of 101.5. Was given tylenol and the usual antibiotics, asked that they
change from the anti diarrheal Imodium, to something that would be more
effective in this situation. Lomotil arrived immediately. I was informed
that my white counts had dropped again and that I would receive IV piperacillin
and gentamicin right away.
Day -6 was essentially a repetition of the
preceding days.
Day 0 was, as has been mentioned by others, an
anticlimax. In one quick half-hour I was reinfused with my own purged cells .
In the days following I watched my white count
drop to .01 and was delighted to be told that meant that there were no
more CLL cells in my body. I continued on the antibiotics with the
addition of vancomycin. On Day +13 it was decided that there was an infection
in my Hickman and it was removed. Now I was using a peripheral IV in my arm
and having daily blood sticks which made me look like a "junkie",
which I would be happier not to have to endure.
In typically GrannyBarb fashion, I developed
chemotherapy induced acral erythema (palm and sole disease), a disease
one almost never sees, as a result of cytoxan. It caused my fingers and
heels to develop sore, throbbing, red/purple sores that prevented me from
doing many of the activities of daily living like opening things with thumb
and forefinger, walking on my entire foot (I totter around on my toes only),
and even opening food packages. UGH! It even kept me from answering
computer email--and that was a major complaint.
Day +17 and I was still in the BMT unit. White
counts were at .480 and platelets today were 8, so I had a bag of platelets
infused.
The support and love that you have given me--
by email, cards, phone calls and physical visits, by prayers, prayer lists,
strong thoughts, and caring concern have really come through and given
me an immeasurable boost. Thanks to all who cared so much and who made
sure that I knew about it.
SPRUNG--The Adventure
Continues!
On day +22 I was sprung! Counts were still
low, but my polys were high enough and the red counts were high enough
so that they felt I could handle being out of isolation.
Home was the Howard Johnson's Inn at Fenway
Park. We had a lovely room, refrigerator, freezer, microwave, and internet
hookup. I was told to plan on being in Boston for two weeks with visits
to the Dana Farber clinic every other day. I was amazed at how little energy
I had and how much effort the least bit of exertion took. I really didn't
want to go anywhere or do anything much. Since I wasn't allowed to eat
at a restaurant, and we couldn't use carry out food, my menus were Stouffer's
frozen dinners, prepackaged foods, and things I could eat immediately.
Thank goodness for my son, Neal, and his lovely Marjorie, who were kind enough to learn
the dietary rules, and bring food cooked in their kitchen for me to eat several
evenings. We also spent one week-end at their home and the break was really
appreciated.
At the Clinic, I found that I was usually being
given blood and/or platelets almost daily. We celebrated those days when
I needed neither. My cough was nearly gone by this time, and that was another
a cause for cheering! Dr. Gribben shocked me when he announced that I
was doing so well that I could go home the next Tuesday, so after just
a week and a half of Clinic visits, we hopped on a plane (with me wearing
my trusty mask) and flew home to 90 degree, humid weather in Mizzery--Ok, so I really live in Missouri.
Gosh it was good to be home. I spent that first
day just looking at all the space I had and all the rooms and walls. I
even found enough energy to run up and down the stairs several times just
to enjoy the feeling that I had space available. I hadn't realized how constrained
I'd felt until I could move around again.
My fingers continued to peel, leaving fresh new
skin behind, and I could again answer email. Then my feet began to peel
(Goodbye calluses) so it was a good thing it was summer and sandals
were appropriate. Twice weekly visits to my hem-onc became the rule. Invariably,
I'd need platelets or blood, and that meant the poor nurses trying to find
unbruised veins into which to put the IV needle, without blowing a vein.
Some days it took 4 or 5 sticks until a useable vein was found. OUCH! That
was when I wished that the Hickman was still in place.
I'd been through a period of computer burnout
when answering my email became a chore. I guess I was too tired, and trying
to push myself past my limits. Finally those last few weeks, I'd begun
to have some more energy and had begun to enjoy the computer again. I
did try to update my page, and was shocked to discover that I had misplaced
the disk that had this page on it. Thank goodness for Joyce Niblack, whose laptop
computer I had borrowed, who sent me a back up copy, so this update could
be done.
The week of day +67 was the first week when
I didn't need either blood or platelets and we celebrated by dropping my
office visits to once a week. The next week again, I didn't need blood
or platelets and there was hope for a trend. I finally was feeling energetic
enough to go out to the theater and to dinner--the first time since the
bone marrow transplant. It was also the week that I discovered that I was
losing my fingernails, and I'd probably lose my toenails also....Now how
will I wear shoes when my toenails are falling off? Tune in later for
the GrannyBarb solution to this problem.
Week four with no transfusions and Dr. Denes, my oncologist,
decided that one visit every two weeks would be sufficient. Sounded wonderful to me.
I was starting to feel like myself again, Yippee!
Day 100 had passed. I hadn't had a transfusion since, and visits
to Dr. Denes had dropped to once a month. I thought I was in heaven.
Then I started having nausea and vomiting when eating scrambled eggs. I
left a message at Dr. D's office and stopped eating eggs. Irv and I decided
to vacation in Phoenix and relax for the first time in 3 years, and we had a
wonderful visit with Joyce Niblack, her husband Bob, and her 91 years young,
father. I noticed that I was having edema (swelling) of the feet and ankles,
so I called Dr. Denes in St. Louis and, bless him, he called in a prescription
for a mild diuretic. That did the job.
When we returned and I visited his office, Dr. D suggested that I
have a sonogram of the gall bladder (eggs problem) and an echo cardiogram
(edema problem). My counts looked wonderful. My hematocrit and hemoglobin
were normal. My red and white counts were just below normal, and platelets
were at 46,000. To make a long story short, they found I have gall stones and will
need to lose my gall bladder, but not until my platelets reach 100,000 or
so. The echo-cardiogram showed calcification of the valve to the aorta--which fortunately
sounded worse than it is. The valve is still working correctly, but I'll need
antibiotic precautions before I go to the dentist, have a colonoscopy,
etc. Oh well, I can live with that!
The best news of all was that I returned to work full time the first week
after Thanksgiving. So far, I have been thrilled to be back and feeling fine. Here's
wishing I'm as strong as I hope I am!
Six Month Check-up
You're reading GrannyBarb's CLL Story - Page 3
