It’s the night before my first Filgrastim injection.
I’ll be travelling to my apheresis center to receive my
first Filgrastim injection, as it has to be given under medical supervision in
the event of an adverse reaction. Additional blood work (a Complete Blood
Count, or CBC) also needs to be drawn prior to the first injection to determine
the level of white blood cells, platelets, and stem cells in my bloodstream.
This CBC will be used as a baseline for comparison for CBCs
drawn immediately prior to the PBSC procedure and immediately after the
procedure. The results from all three CBCs will show how many stem cells my
body produced due to the Filgrastim injections, and also how my body handled
the PBSC procedure.
I’m nervous. I’m not going to lie about that. But I’m not
nervous for the reasons you might think. I am not worried about the injections
or the blood draws. I’m not even nervous about the collection procedure. I’m
worried that something will go wrong and cause the PBSC collection to be
delayed, or even worse, cancelled.
Today is Day -6 for my recipient. Six days until transplant
(Day 0). This is the day she checks into the hospital to begin her chemotherapy
and radiation. This is the day she fully puts her trust into the hands of her
transplant team . . .and also into mine. I can’t imagine what is going through
her mind.
Day 1 of Filgrastim
I am up early so I can get dressed, eat a full breakfast,
and attempt to get my mind in order before heading to the apheresis center. I’m
feeling calmer than I expected.
My wonderful friend, Cheryl arrives to travel with me. She
has volunteered to be my hand holder for the day. Cheryl has a wonderfully calm
presence and I knew she would be good company. Her duties for the day included:
providing good conversation, driving my car if I felt unwell or simply didn’t
want to, soothing any nerves (mine, not hers), and of utmost importance – she
was to serve as my surrogate drinker.
Alcohol consumption is not encouraged while taking
Filgrastim. This was unfortunate, as I had found a local brewpub near the
apheresis center where I was planning on stopping for lunch. The pub had just
brewed a double chocolate stout that I would not be able to partake of. I had
hopes my surrogate drinker would be nice enough to drink a pint of it in my
honor (and maybe even let me take a tiny sip of it).
The appointment lasted about 40 minutes. A vial of blood was
drawn for the CBC and then the Filgrastim was injected. Two syringes, one in
the back of each arm in that lovely strip of fat that us ladies are so fond of.
The amount of Filgrastim injected depends on your weight and
since only a certain volume can be injected into any one spot of your body,
more than one injection can be required. The injection needs to be into fat, so
the back of the arms, belly, and thighs are the most frequent injection sites.
I only felt a slight sting when the needle was inserted and
as the drug was pushed in. The sting was very similar to a mosquito bite and
disappeared almost as soon as the needle was removed. I noticed that the doctor
pinched the injection site immediately after removing the needle, which also
helped to alleviate the sting.
The staff had me hang out and relax for the next 30 minutes
so they could watch me for any allergic or adverse reactions. During that time
we filled out additional paperwork, went over questions I had, and discussed information
I needed to know for the next few days of home nurse visits and the day of
collection.
Much to my relief, I had NO allergic or adverse reactions.
This had been one of my main worries, one of those persistent “what-ifs” that
had plagued me over the past few weeks.
Thankfully, that worry was laid to rest.
Now it was time for beer. Or, in my case time to watch
someone else drink beer.
My surrogate did me proud. She reported that the double
chocolate stout was awesome.
We arrived back home around mid afternoon. Fatigue was
starting to set in. It had already been a long day for me, due more to the
emotional side of the experience but also possibly to the Filgrastim kicking in
as fatigue is a commonly reported side effect.
After recharging with a few hours of sleep, I was up in time
to have dinner with friends at a new Thai restaurant in town. It was nice to
kick back and relax and to update them on the donation experience to date.
But, after a few hours, I was tired again. I headed home and
was in bed at the early hour of 8pm.
Day 2 of Filgrastim
As told in an e-mail update to family and friends:
Greetings from my couch!
It's the eve of Filgrastim Day 2. The home nurse arrived around 9
this morning to administer Day 2's dosage. The total visit took around 30
minutes.
Mentally I'm doing well. As we get closer to
the collection date the number of things that can go wrong are exponentially
decreasing. This has been my main worry to this point - possible delays or
changes in patient status.
Physically I'm doing well, just a bit tired. I
was exhausted yesterday so went to bed early, then ironically, tossed and
turned all night. I made up for that with 2 naps today :) I am running a low-grade
headache and the lumbar region of my spine is starting to ache. My tailbone and
pelvic bones are also chiming in occasionally with a twinge here and there.
This is a great sign the Filgrastim is working and my stem cells are migrating
in mass numbers to my bloodstream.
I'll be taking it easy for the weekend;
thankfully I don't have too much to do. I foresee many naps.
Mom is arriving Sunday around 1pm. I'll swing
by the airport then we'll meander on up to the hotel.
Love
to all
Day 3 of Filgrastim
I slept so much better last night! I was still waking up
every 3 to 4 hours but thankfully I was actually sleeping in between waking up
and not just tossing and turning.
Part of the difficulty in sleeping was finding a comfortable
position. I found that the best positions were on my back with a large pillow
raising my knees and on my right side with my top leg resting on a pillow. The
pillow helps take the weight of the legs (or leg) off my lower back and sleeping
on my side takes the weight off my tailbone.
The rest of the day was very much a repeat of yesterday.
The home nurse visited around 10am for my third injection.
I was able to finish up the laundry, vacuuming, bathroom
scrubbing, and bed making that needed to be done before Mom arrives tomorrow.
More body parts are joining in the bone twinge craze. I feel
the twinges mostly in my sternum, lower back, tailbone, and back of the pelvic
bones but occasionally my ribs, shoulder blades, and top of my femur bones will
join in the chorus. They feel similar to a muscle ache you would get from a
good workout with the only problem being that you can’t stretch the ache out of
a bone. Thankfully the twinges are gone within seconds of appearing.
Mentally I’m still feeling calm. Having a list of things to
do is helping keep me occupied and moving. I also love that it’s the weekend.
There’s no place I have to be, I can just slowly work my way through my to-do
list and take naps when and if they’re needed.
Day 4 of Filgrastim
My sleep patterns improved again; I slept deeply last night,
only waking up once.
The home nurse arrived at 9:30am to administer my 4th
dose of Filgrastim and to release me from her care.
I threw clothes in a bag and before I knew it, Mom and I
were arriving at our hotel. The registry had reserved a room for us in order to
remove any worries or possible complications of travelling the morning of the
collection. Since it was still winter in the northeast I was happy to not have
to be concerned about snow or ice on the roads.
I went down for a nap while Mom tried to walk out the
stiffness of 7+ hours of airline and car travel. When I awoke I found her in
the hotel bar enjoying the local paper and a second glass of white wine; which,
she claimed, was in my honor. It was another shining example of my surrogate
drinkers stepping up to the plate on my behalf.
Mentally, I was excited for tomorrow. I was ready to get my
stem cells to my recipient. Thoughts of her had frequently been on my mind and
I wondered how she was handling her treatment. I hoped she was surrounded by
her family and loved ones and that she was as comfortable as possible.
Physically, this had been the most challenging day so far.
My bone twinges had become very sharp. Thankfully they still only last a few
seconds, but they definitely get my attention! I felt best when I was lying
down in bed or sitting and relaxing with various pillows propped around me to
lean on.
Day 4 as told in an e-mail update to family and friends:
Collection Day is tomorrow!
Mom and I have arrived safely at the hotel. We'll be checking in
around 7am tomorrow to get my last round of Filgrastim and blood work taken, and
then it's off for some breakfast while the Filgrastim kicks in and my CBC is
processed. I'll probably be hooked up to the machines between 8 and 9 tomorrow
and will remain a captive until they have collected the target number of stem
cells they're looking for.
Wish us luck!
Love to all
Day 5 and PBSC collection
We arrived at the apheresis center just after 7am. My last
dose of Filgrastim was quickly administered and more vials of blood were drawn.
Some of the vials were designated for the cryo-freezer, as
these were the samples being submitted as part of the clinical trials I had
joined.
Three of those vials were going immediately upstairs to be
processed before the collection began. Some of the vials would be used for
another CBC, Chem Profile, and Lipid Panel. And one vial would be tested for
the all-important CD34+, the value that indicates the number of stem cells
circulating in my blood stream. This number would allow us to ballpark how many
stem cells would be in the final collection bag.
As I was to learn, today was going to be all about the
numbers.
Mom and I left the apheresis center for breakfast in the
cafeteria. We had one hour to eat. By the time we returned the blood tests would
be in.
I had been advised to increase my calcium intake and to
avoid caffeine. The calcium was to counter-effect the anti-coagulant that would
be mixed into my IV of returning blood and the caffeine avoidance was to negate
the need for a bathroom trip during the procedure.
My breakfast included a breakfast sandwich with a side of
yogurt and fresh fruit. I skipped my normal morning cup of coffee and opted for
a cup of herbal tea.
As Mom and I consumed our food at a leisurely pace, we watched
some of the morning shows on the televisions in the cafeteria. Good Morning
America (GMA) was on with Robin Roberts.
Robin had been diagnosed in 2012 with Myelodysplastic Syndrome
(MDS) and had undergone a bone marrow transplant. Her older sister had been her
stem cell donor. I had closely followed her through
her transplant process and
had been inspired by her grace and strength.
Following her mother’s advice of “make your mess your message”,
Robin took to the airwaves to talk about bone marrow transplants and the
crucial need for more donors. People across the country heard her message and
flocked to
join the registry. Patients who were currently facing the daunting
process of a bone marrow transplant found inspiration just as Robin seemed to
draw strength from the stories transplant survivors shared with her.
As GMA switched to the morning’s weather, they showed the
national map. My heart sank.
A section of the country appeared to be smothered under a
giant white ball of snow and ice. At the bottom of the screen sentences
scrolled across in a newsfeed, snippets of which jumped out at me: “paralyzes
parts of the country”, “hundreds of flights cancelled”.
Crap. I had no idea where my recipient was located. My stem
cells, once collected, would be transported by a bone marrow courier straight to her. This might be a
major hurdle my courier would have to deal with. I crossed my fingers that my
recipient was nowhere near the affected area and the storms would not delay the
courier.
By 8:40am we were back at the apheresis center. I had
stopped by the restroom twice on the way back from the cafeteria to ensure I
was starting the PBSC procedure on an empty bladder.
While some centers have bedpans if you need to use the
restroom during a collection, I had been advised that this particular center
did not deal with bedpans. Bathroom use was allowed, however they had to stop
the collection procedure and unhook your lines (the IVs stayed in your arm,
just the tubing was removed). You would also only have the use of one arm as
the other would have a board velcroed to it to prevent bending of the arm.
I seriously wanted to avoid having to do this. My strategy
going in to the procedure was simple: no caffeine, an empty bladder, and ice
chips. The ice chip suggestion had come from a friend who had undergone
chemotherapy treatment. The ice chips would be cold, quench the feeling of
thirst, help me stay hydrated, but wouldn’t add large amounts of liquid to my
body that would go straight to my bladder.
The blood tests were back. As expected, I had a high white
blood cell count and the CD34+ count was in the ballpark for the amount of stem
cells we needed to collect. Yes!!! I was also extremely relieved to learn the
current snowstorms would not affect the delivery of my stem cells. My recipient
was not located in the affected portion of the country.
Time to collect the stem cells. My “in-port” had to be
inserted first. This is the IV that would return the blood back to my body
after the stem cells had been removed by the apheresis machine. The needle is a
smaller gauge and can be inserted in the back of your lower arm (a smaller
needle means it can be inserted into a smaller vein). The IV placement allows
this particular arm to be mobile enough to work on a laptop, write a letter, or
work an IPod or Kindle. Since I am right handed I asked that the “in-port” be
placed in this arm.
Boom. The needle was in and the port and various tubing was
taped into place then wrapped with gauze.
The “out-port” was placed in the crook of the elbow on my
left arm. This is the IV that would remove the blood and feed it through the
apheresis machine. The needle size is the same as those used for regular blood
donation. The IV placement in this arm unfortunately means that the arm must be
fairly immobile.
And again, at lightning speed, the needle was in and the
port and tubing was being taped into place. The pain from insertion was
minimal; I honestly think the sting from the Filgrastim injections lasted
longer than the pain from the needle placements.
 |
All of the lines can be a bit intimidating, but in reality you only have 2 IV sites.
My left arm was the "out-port" and my right arm was the "in-port". The extra lines
mixed in saline and anti-coagulant as needed to keep the process running
smoothly (literally). I referred to those lines as my Lime-Aid and Gatorade lines
as they had a faint green and yellow tinge. |
It was 8:50am, we were off and running. Or more
appropriately, the procedure was off and running. I, on the other hand was
attached to a 40-pound machine via an IV leash. I, most certainly, was not
going anywhere for the next few hours.
Time to plug in my earbuds, turn on my IPod, and take my
first nap of the day.
I awoke shortly after I had fallen asleep. The apheresis
machine was beeping. A nurse came over to check the machine’s computer screen.
She explained that it is common for the patient’s veins to take 10 or 20
minutes to “plump up” and deliver a continuous flow of blood. The beeping was
the machine simply alerting there was not a smooth flow established yet.
The nurse asked me to squeeze a foam disk in my left hand to
help establish that flow. A few minutes later, my veins had plumped up and the
apheresis machine was happy. I went back to sleep.
I slept off and on for the next few hours. While I slept Mom
sat at the foot of my bed, keeping watch.
During the times I was awake, I talked with the staff. Dan,
the head of the center, had been doing stem cell collection for over 20 years. He
was able to explain what would happen inside my recipient’s body when she
received my stem cells.
Depending on the preparatory regimen my recipient had
undergone, her bone marrow might have been either completely obliterated
(myeloablative), or only partially obliterated (non-myeloablative). If she had undergone
the non-myeloablative treatment, she would have some bone marrow remaining in
her body.
After treatment, her body would begin signaling her marrow
that it needed to produce more red blood cells, white blood cells, and
platelets. At the same time her marrow would be producing new cells, my infused
stem cells will begin settling in and creating new, healthy marrow that would
also produce it’s own line of red blood cells, white blood cells, and platelets.
And that’s when our two bloodlines would go to war.
My cells will quite literally be on a “seek and destroy”
mission. Each of our cell lines will recognize the other as foreign and move to
kill them.
The hope is that my cells will kill my recipient’s cells
faster than hers can kill mine. My cells have several advantages in the fight
since they’re healthy and my recipient is on immunosuppressive drugs to
decrease her reaction to my cells.
If my cells win, they will establish a new system of bone
marrow that is completely mine. All of her future blood draws would have my DNA
(and blood type). If some of her marrow survives, it’s possible she will have 2
sets of DNA in her blood – hers and mine. This is known as chimerism.
Up until this point in the procedure, I had been giving my
stem cells a pep talk (in my head, not out loud) to let them know they were
going to a new home, one they needed to recognize as theirs and fiercely protect.
When I heard my stem cells were possibly going to battle, the pep talk quickly
changed to a new one that told them to burn their new house down to the
foundation, re-build it from the ground up and protect it from all foreign
invaders.
Silly, I know, but I’ve seen the power of positive thinking
and optimism and was hoping that my thoughts would somehow rub off on my stem
cells, providing just that extra bit of luck for my recipient.
I thought frequently of her during the collection procedure.
She had completed her chemo regimen the day before and today was her day of
rest. I wondered how she was doing and what she was thinking. I hoped she had a
loved one nearby, keeping watch over her, just as I had someone with me.
Around noon, the collection bag had a respectable amount of
fluid in it. It was time to draw a lab off the bag to tell us how many stem
cells were present. A nurse gently mixed the contents of the bag to ensure the
cells were evenly mixed so the sample drawn would give an accurate estimate of
the contents. She opened a valve at the bottom of the bag and one of the
attached vials filled with fluid. The vial was gently clipped off and it was
immediately sent upstairs for analysis.
The CD34+ count was back within the hour. Based on the
number of stem cells present, we would fall just short of the number the
patient’s transplant team had asked for. The courier was scheduled to arrive
between 3 and 3:30pm. The apheresis staff hoped to have the stem cells packaged
and ready to leave with the courier by 3:45pm.
There were two options available: let the collection
continue for 45 minutes longer than planned, which would get us the number of
stem cells the transplant team had asked for or end the collection at the scheduled time and send the number of
stem cells we had.
Each option had its pros and cons. If we let the collection
go longer we would collect the target number of stem cells but we also ran the
risk of the courier missing his flight. Given the time of day, he was likely on
the last flight of the evening. If he didn’t make it he’d have to spend the
night and get the first flight in the morning.
This would cause a delay in the patient receiving the
transplant and possibly pose a challenge in keeping the stem cells fresh during
transport. From the time the stem cells are collected, they have a natural life
span. The goal is usually to get the stem cells to the recipient within 12
hours of collection (24 hours for international transplants).
The other option was to ask the transplant team if the
projected number of stem cells to be collected was acceptable. If the
transplant team said yes, the collection would end as scheduled and the courier
would make his flight. On the down side, more stem cells are always better than
fewer when going to transplant.
The decision was up to the transplant team. The apheresis
center made the phone call.
Due to strict privacy rules enacted by the Be The Match
registry, the collection center where the donor is located does not have direct
contact with the transplant center where the recipient is located (and vice
versa). This is to protect the privacy of both individuals and to ensure that
medical decisions are made in the best interest of each patient (while I was
the donor, I was also considered to be a patient at my apheresis center).
Phone calls from the apheresis center had to go first to my
donor center representative, be routed through the national office of the Be
The Match registry (the only party that had access to both donor and recipient
information), and finally to the transplant center where my recipient was
located.
As you can imagine, this took a bit of time.
Just after 2:30pm, the transplant team’s decision came in.
They were happy with the number of stem cells we had! The collection procedure
would end as scheduled at 3:15pm.
The apheresis center exploded into a frenzy of activity. The
apheresis machine was kicked into a faster collection rate in an effort to
collect as many stem cells as possible. While the machine was being adjusted,
the rest of the staff started working the phone lines. One call was to the lab
upstairs to notify them I would be “off machine” at 3:15pm and to expect 2 vials
soon after that. One of the vials would be from the collection bag; the second
would be from my IV line for one last CBC.
Specific tests had to be run on the final “product” as the
stem cells are called. The all-important final count of CD34+ is just one of
the tests that would be run. Since a transplant depended on these tests, a lab
person would be waiting for the vials in order to immediately begin the testing.
The CBC would give a post PBSC collection “snapshot” of my blood levels.
Specifically, my platelet levels needed to be checked. If they were found to be
below a certain number I would need to be carefully monitored.
Other phone calls went to the courier to update him of my
ending time and to my donor center representative to give a complete progress
report.
Before I knew it, it was 3:15pm. The collection was stopped
and the precious bag of stem cells was removed. As a vial was drawn from the
collection bag, one last final vial of blood was taken from my IV line. The
vials were immediately handed to a staff member who rushed it to the waiting
lab.
 |
My bag of stem cells just before the PBSC collection ended.
It is very humbling to think what this tiny bag represents to my recipient. |
The apheresis machine was flushed with saline and then run
in reverse to put any remaining blood in the IV lines back into my body. And
then the lines could be removed. The “out-port” in my left arm was the first to
come out, followed by the “in-port” in my right arm. The IV sites were covered
with a small piece of gauze then bandaged into place with an adhesive wrap.
I was able to take a quick photo with my stem cells before
they were hustled away. My impression of the bag was that it was much smaller
than I expected. Mom’s impression was that it looked like V8 juice.
The collection had taken 6 ½ hours. After sitting still for
that amount of time I had some critical business to take care of. I was able to
slowly shuffle to the restroom.
Standing was interesting, as was walking. I felt heavy, as
if my arms and legs weighed 50 pounds each, and very stiff. I was so ready to
get my body moving again, to try and get the stiffness worked out of it.
Mom and I gathered our belongings and said our goodbyes to
the staff. As we left the center with me using Mom’s shoulder for balance, we
passed into the waiting room where a distinguished looking gentleman was
sitting. My courier.
The man had a calm presence of competence about him. He was
looking down at a folder of papers and did not look up as we entered the room.
I stepped away from Mom and gently touched the man on his
knee to gain his attention. In that moment I wanted him to know how much I
appreciated the life saving work he did and that I understood the
responsibility he shouldered every time he was on a
courier mission.
A lump came into my throat and tears gathered in my eyes.
There was no way I was going to be able speak more than a few words.
I settled for two. “Thank you”.
As I uttered the words I felt my throat close up. Further
speech was impossible at that moment.
He was startled at first but then seemed to quickly realize
who I was. He smiled.
I turned back to Mom, and with my hand on her shoulder, we
left.
