After what has turned out to be a very long day, and now 10:00 p.m., we are at long last home. Dennis and his fragile immune system are now on their own, as his bone marrow works to build new blood cells. There is no more support of antibiotics or antivirals for protection. The Karmanos staff sent us home with not one, but two boxes of surgical masks. Healthy adult guests are very welcome to visit; but, to stay on the "safe side", will be provided with a surgical mask to wear while here.
There is a bonus - You may take your mask, and a few extras for the children in your life, home with you! The photo ops will be priceless, we're sure!
There will be many follow-up appointments with his doctors as Dennis recovers, but the biggest obstacle is now behind him. Everything possible has been done to knock this beast of a disease into remission. Our heartfelt thanks are being sent out to each of you. Thank you for your love, your unwavering support, your notes, and your prayers. We are very thankful to be home for Christmas, and feel very blessed to have such a wonderful set of family and friends surrounding us.
We hope you will have a warm and beautiful Holiday season.
Affectionately,
Dennis & Deb
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A Multiple Myeloma Cancer patient's personal journey through his bone marrow transplant. We hope to provide insight and relieve the apprehension of others who are anticipating a stem cell transplant. This journey occurred in 2012. Science in this field has been moving forward quickly, so your experience may be similar but not exactly the same.
Monday, December 17, 2012
December 17 - Morning; Fingers crossed
Yesterday morning, Dennis’ white blood cell count was 2.2
(surpassing the “magic number” allowing him to go home). We were advised that
the IV antibiotics were being discontinued and if Dennis stayed fever free and
all of his CBC numbers remained stable, he could go home today. Additionally, if there are no additional IV
supplements needed (potassium and
magnesium), the IV PICC line can be removed.
Fingers crossed.
As I write this, it is 11:30 a.m. The CBC numbers are not back from the lab. Evidently, the
computers are down in the lab and every number for each patient must be entered
the old fashioned way - by hand. Lunch
and dinner have been ordered. We could
be here awhile.
Just in case we were getting bored with the same-ol’,
same-ol’, there is a new development.
What is believed to be gout has raised its ugly head in Dennis’ left
foot. Chemotherapy can cause a gout
flare-up and rise in the uric acid level.
Fortunately, there are many pain relievers available in a hospital, and
Dennis is beginning to get some relief.
A blood test for the uric acid level has been ordered “STAT”. Whatever that means with computers down.
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Friday, December 14, 2012
December 14 - An extended stay
The great news is that Dennis’ white blood cell count is rising. WBC today is 1.3 (the goal is 2.0). Dennis walked a mile during each of the past 4 days; in fact, he hasn’t missed a day of walking, even when feeling his worst. The daily walks aren’t hurting me a bit, either.
It’s finally Day 14 - the average length of stay post-transplant. The transplant team has extended Dennis' stay until early next week; his white blood cells are climbing, but they aren't in a hurry. Due to our distance between Lowell and Karmanos, and also the time of year when illness is making rounds, Dr. Abidi has determined it safest to keep Dennis right where he is until his immune system is strong enough (and stays strong enough), to help his body battle at least a few germs - or, until at least Monday, December 17. Dennis’ WBC count won’t recover to a normal range for some time.
Dennis received a pint of blood through transfusion yesterday. His hemoglobin dipped, and therefore Dennis received blood as a precaution against a further decline. The transfusion will also assist his strength; a person doesn't have much energy when anemic. The platelet number dropped again this morning so the doctor prescribed another transfusion of blood platelets today. If all blood count numbers are within normal range tomorrow morning, the precautionary IV antibiotics will be discontinued. Dennis must be fever-free, without the antibiotics, a minimum of 24-hours before he can go home.
All-in-all, recovery is going very well. We’ll be home for Christmas
(tip-the-hat to Bing Crosby).
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Tuesday, December 11, 2012
December 11 – Inspiration
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| Inspiration |
We enjoyed a visit from our daughter, Deanna, yesterday. She brought along a little inspiration for Dennis from the kids – what do you think?
We are hopeful Dennis can be released on day 14 (the average), which is Friday December 14. We’re told patients are seldom released on the weekend, so we may be looking at Monday, December 17 – Dennis’ white blood cells are taking their sweet time finding a new place to live in his bone marrow. Although his number did rise somewhat this morning, it remains at 0.1 and will need to come up significantly.
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| Platelet Transfusion |
Dennis is feeling a little bit more energetic and was able to complete a mile in laps yesterday. His appetite is slowly returning - he appears to have a craving for bacon now.
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Sunday, December 9, 2012
December 9 - Encouragement
The doctor was here; the chest x-rays are clear. Dennis awoke with a sore throat this morning. We're hoping the sore throat and fever are not symptoms of oral mucositis (mouth and throat sores) caused by the chemotherapy. Dr. Abidi does not expect there is a dangerous infection, but is continuing the IV antibiotic. The antibiotic will serve as Dennis' immunity until his white blood cells climb in number.
Dennis' platelet count was very low this morning; 10 (meaning 10,000), and is outside the doctors determined safety zone. Dennis will most likely receive a blood transfusion tomorrow. There isn't anything to worry about - the doctor is on it.
All blood count levels continue to drop for yet another day.
We can breath easier; and we're another day closer to coming home.
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Dennis' platelet count was very low this morning; 10 (meaning 10,000), and is outside the doctors determined safety zone. Dennis will most likely receive a blood transfusion tomorrow. There isn't anything to worry about - the doctor is on it.
All blood count levels continue to drop for yet another day.
- WBC = <. 01
- RBC = 9.1
- Platelets = 10
We can breath easier; and we're another day closer to coming home.
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Saturday, December 8, 2012
December 8 – A Fever
On this Day 8 of post-transplant, Dennis has acquired a fever. His blood has been drawn from the PICC line and was sent to the lab for cultures. Additional blood was drawn from one of his veins so that an infected PICC line can be ruled out. We will know the results of the tests after any bacterium present has a chance to grow (+/- 24-hours). Also, four chest x-ray views were ordered to be certain there is no pneumonia or other inflammation of his lungs present.
Stem cells travel to the bone marrow where they will stay and begin to produce the body’s blood cells – red and white – in a process called engraftment. The process can take 2-4 weeks; but full reestablishment of the immune system can take several months. I can only speak in averages, but have been advised that the average transplant patient can be released from the hospital when the white blood cells or (WBC, Immunity cells) reach a level of “above 2”. But, each doctor determines the patient's release based on the various individual factors of each patient.
Dennis’ Current
Levels
|
Ideal, or “Normal”
Levels
| |
WBC
(White blood cells / Immunity) |
< 0.1
|
3.5 – 10.6
|
RBC (Red blood cells / Hemoglobin) |
9.9 |
13.3 – 17.1 |
Platelets - in thousands (Stimulate clotting) |
25 |
150 - 450 |
Potential causes of this fever:
- We are told that a common complication during engraftment is toxicity from the preservative protecting the stem cells during the freezing process.
- Another, and potentially dangerous, complication during engraftment is the increased risk of infection with bacteria, fungi, and viruses as the body’s white blood cells are trying to build to normal levels.
Dennis has been consistently receiving antibiotics in tablet form each morning, to prevent some of the more common and dangerous infections, since the transplant. The doctor has ordered an additional IV antibiotic, which will continue being administered throughout the next several days.
I am less than bored. Just in time, too - there are no prisoners to keep an eye on at the moment.
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Thursday, December 6, 2012
December 6 - Something to focus on
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| Room 8217 |
Here is a photo of our living arrangements during the past week. Cozy, right? 'Hover' over the photo to make it larger. Tomorrow will begin week 2 of Dennis’ journey to remission.
Progress has been as expected. Dennis has been spending much of the day napping, but has completed a mile of laps during each of the past two days; we’re focused on keeping his strength up. The white blood cell count is almost zero (0.2) and is expected to drop further in the next 24-hours. The hemoglobin count is holding strong, so no need for a blood transfusion so far. Platelets are very low, so Dennis is still prohibited from handling sharp objects. He will begin to receive a series of Neupogen injections tonight, which will encourage his stem cells to reproduce at hyper-speed. If you remember, Neupogen is the injection Dennis received while at home in preparation for the stem cell harvest; you know, the really expensive one ($3,000 for each injection). And, something else we were expecting, hair loss; although not very much as of right now.
One oddity that wasn’t expected is an acne-like rash on Dennis’ face that was caused by the chemotherapy and steroids. So far, the face is the only area that the poison has chosen to work itself out of the body through . . . perfect. The doctor is watching his skin very closely so infection can be prevented; the anti-viral and anti-bacterial drugs Dennis has been given are expected to be enough to kill any bacteria before it grabs hold. Dennis has some benzoyl peroxide handy in the event his face begins to itch; so far, no problem.
Dennis told the doctor that he fully expects his pimples to be gone before Saturday date night.
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Monday, December 3, 2012
December 3 - Things got interesting
Dennis is feeling good, although his blood counts are dropping as expected. Ativan, administered through his PICC line yesterday and today, is being used to prevent the nausea and vomiting resulting from the chemotherapy. All he need do is ask for it at the first sign of feeling “queasy” and the nausea almost instantly disappears. Easy-shmeasy.
Last evening was interesting; we were stunned when suddenly we heard the clang of chains as they hit the floor in the next room! We knew there was a convict being treated on the floor due to the presence of multiple MDOC officers in the hallway "packing heat". What we didn't realize was that there were two prisoners under guard and one of them was in the room right next-door. We weren't worried, really, but I did feel better when we learned this morning that both prisoners had been released back into the care of the prison system. There is a MDOC guard here in the hallway tonight; it seems another prisoner is occupying the room next door which was vacated this morning. Cancer truly doesn't discriminate.
Dennis and I are walking his laps in the hallway each day as prescribed by the doctors. Each time we complete a lap, we make a mark on the board pictured here. The recommended number of laps each day is 10. Can you see Dennis’ count?
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Saturday, December 1, 2012
December 1 - Road to recovery begins
Love that man of mine; his mastery of the element of surprise is only one of the many reasons why. Even though he's going through hell, Dennis remembered (and was prepared for) December 1. This has been packed away in his luggage for a week.
Dennis continues to feel "OK" although, as expected, he is more tired each day. Eating is becoming less a priority. 'Ensure' has been ordered for every tray the food service brings, and the nurse's station is well stocked -with the chocolate flavor of course. The exercise (walking) goal today is 10 laps of the hallway (a little over 1/2-mile). Dennis completed 5 laps this morning and is napping now. We'll finish up later today.
Some of you have inquired about visiting Dennis. Visitors are not restricted, other than for reasons listed here under the "What's going on" tab. Here is a general timeline / guide for what to expect in regard to how Dennis might be feeling:
- Because the chemotherapy effect is gradual, Dennis will feel pretty good this weekend (December 1 & 2), and then will begin to feel weak and “crappy” in general as his white blood cell count drops. Red blood cells can be replenished with a transfusion if necessary, but the white blood cells must rebuild themselves; hence, the low immunity level. We are told that by the time Friday & Saturday December 7 & 8 arrives, the white blood cell count will be at it’s lowest and Dennis will feel at his worst (and will lose his hair). After that, however, the white blood cell count begins to climb, and as it does, Dennis will begin to feel better.
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