December 17 - Evening; We are home

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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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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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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December 11 – Inspiration

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.

Platelet Transfusion

Dennis received a transfusion of blood platelets yesterday. The platelet number had dropped to 3 so it was time to add some to his blood stream. It worked, too – his platelet number today is 20. We’re waiting for the doctor to make his rounds yet today to find out if Dennis will need blood; his red blood cell count (hemoglobin) dropped again this morning, to 8.6.

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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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.

• WBC = <. 01 
• RBC =      9.1
• Platelets = 10

We can breath easier; and we're another day closer to coming home.

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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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December 6 - Something to focus on

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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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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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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November 30 - The transplant

Dennis celebrated a stem cell birthday today at 1:30. His stem cells were returned to him within a half-hour; what an amazing process this is. Dennis is resting and is now another step closer to being home. Until then, we are residing in Room 8217.

Stem cells  live in the bone marrow, where they divide to make new blood cells. Stem cell transplants (or bone marrow transplants) are conducted to restore the stem cells when the bone marrow has been destroyed by disease, chemotherapy or radiation.

The Karmanos staff, while describing this transplant, told us that when his cells are returned to Dennis there will be a heavy aroma of, “some people say garlic, others describe the scent as tomatoes, and still others report the smell is like creamed corn”. Well, in this case, it’s tomatoes – a very, very, strong scent of tomatoes. I’m sitting next to Dennis in a mask as he sleeps, not because he needs me to wear one, but because my stomach is queasy unless I do. We are advised this will last only about 48 hours, but as that time ticks away the odor seeps from Dennis’ pores and from his breath when he talks (or snores). He was advised to bring breath mints with him; I’m here to tell ya – ain’t gonna help. There were 3 transplants on the floor today. One activity patients must do to get well is walk - the only place to walk is the hallway. I used to enjoy tomato soup. We understand the preservative the stem cells are frozen in causes this odor.

Stem cells are living cells that would die if frozen without a preservative, which attaches itself to each individual cell. The stem cells wear their little “jacket” until it’s time to thaw and then transplant them. I’m wondering if there is more than one type of preservative. Maybe it will smell like garlic tomato soup with a side of creamed corn here in a few hours.

I have captured some pictures so you can “watch” the stem cell transplant if you want to; but, if you would rather not see it, please stop reading here. Hover over the pictures to make them larger.

The transplant team

Out of the deep freeze. Notice the "fog"? There were 5 storage tins containing Dennis' stem cells. An additional 5 tins are being kept in storage in the Karmanos lab in the event Dennis ever needs more.

Each tin of stem cells was systematically checked to be sure the cells belong to Dennis.

The stem cells were removed from the tin they were frozen in and warmed in a bath; not long enough to warm them completely, but long enough to thaw for transplant.

The stem cells were retrieved and readied for return to Dennis. The transplant team had 15 minutes from the time the stem cells were thawed to return them to Dennis or the cells would die.

In total, 10 tubes of stem cells were slowly re-introduced to Dennis through his PICC line. Dennis was asked questions consistently during the short 1/2-hour process so his mental acuity could be monitored through conversation, as well as his blood pressure and heart rate. 








Okay, stem cells - do your thing!

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November 29 - Waiting for admission

Hello everyone -

I'm not sure if it's the medication keeping the nausea away after chemo, or if I'm just a member of the "lucky 50%", but so far no nausea at all. I'm feeling "out of sorts" but not sick, really; just wiped-out and napping a lot. I'm bored with sitting around and want to get things moving forward.

The only difference I really notice is a challenge focusing while reading or following along with conversations. It feels like I'm in a fog. Questions I know the answer to take a minute or two to concentrate on and answer. I'm also having trouble hanging onto things. I drop things easily and am having a hard time picking things up. We're told this is a neuropathy affecting the nerve endings in my fingers and is a side-effect of the chemo (and will go away eventually).

Transplant day is tomorrow; we will receive a phone call in the morning to let us know what time to be at Karmanos for admission to the hospital. We'll let you know how that goes! Thank you for checking in on me.

Dennis

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November 28 - Hammer receives "The Hammer"

One word describes today.  B – o – r – i – n – g

But, all is well.  Today’s prescription is the full day of the chemotherapy referred to as  “The Hammer”, and is an infusion that will take 8 hours to complete. This chemotherapy will (gradually) completely destroy all of Dennis’ red and white blood cells. There are 3 prescriptions waiting for us to pick up in the pharmacy “just in case” of nausea, moving forward from tonight. Eating “light” has been recommended at dinner (no fast food/grease).

As to what we can expect, the staff here relates that, because the chemotherapy effect is gradual, Dennis will feel pretty good on Friday and Saturday (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. We are hopeful that he will be released from Karmanos in 14 days (around December 15).

With the above timetable in mind, if you would like to visit, you are certainly welcome. PLEASE don’t feel as though you need to visit, though. It is quite some distance from West Michigan.

We did learn yesterday that the doctor expects us to stay very close during the first week after release – so it looks like another hotel stay may be necessary. Because everyone recovers from a transplant at his or her own pace, everything in regard to dates and condition remains tentative. We’ll be sure to keep everyone posted.

Tomorrow, November 29, will find us here again for 5 or more hours as Dennis is monitored and receives more hydrating fluids. Friday is the long-awaited and very well-earned day of transplant.

Dennis is receiving all of his messages, thank you for sending those along. We really appreciate all of your expressions of affection and support. Thank you so much for your friendship. 

Dennis & Deb

An aside - For those of you interested in the cost of cancer (we always find it to be interesting, but mostly unbelievable):  Eight ounces of today’s chemo drug is approximately $20,000 (a nurse’s guess). Add that to that the special injections needed before the stem cell harvest – $35,000 (for 12 injections).

We're thinking we will create a tab here about the cost of this process, in case others are interested. We continue to shake our heads in amazement and completely agree that the health care system in this Country needs a MAJOR overhaul.

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November 24 - Schedule is set

We  received the the much anticipated telephone call from our transplant coordinator yesterday. Dennis and I will be leaving for Detroit on Monday afternoon, November 26 so Dennis can begin the grueling medical preparation necessary for his transplant. We will be staying close-by the Karmanos Cancer Center, at The Holiday Inn Express on Washington Blvd., during four nights this week.

• Tuesday - Meet with Dennis' doctor. Dennis will also receive his PICC line on this day. 

• Wednesday - Dennis will undergo 8-hours of chemotherapy; this is the very heavy dose of chemo that his doctor refers to as "the hammer'. 

• Thursday - IV fluid intake and monitoring all-day.

Dennis will be admitted to Karmanos, and will receive his stem cell / bone marrow transplant on Friday, November 30.

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November 21 - Relaxing at home

At home

We're home from Detroit and relaxing until we receive word from the doctor at Karmanos that Dennis has been scheduled for his transplant.

We are thankful for the opportunity to be with our family on Thursday to celebrate Thanksgiving.

We will update this page again when there is more news to report. Enjoy the holidays!

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November 20 - Stem cell harvest, Day 2

No more Cobe-spectra

A second long day was spent attached to the Cobe-spectra. Great news, enough stem cells have been harvested, meaning Dennis will not need to spend a third day on this machine.

We left Detroit and are home this evening. 

Dennis is doing well, albeit a bit weak and tired from the procedure. He does have thrombocytopenia - his blood platelet count is low, which is normal after a stem cell harvest. Special care must be taken against an open injury, so no shaving with razor blades for 5 days. . . and he can't run with scissors.


Because platelets are needed for clotting, cutting himself with a low platelet count will put Dennis into a possible '911' situation. 

The next milestone in this journey is the transplant. Stay tuned to this space and we'll let you know when.

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November 19 - Stem cell harvest, Day 1

Cobe-spectra

Tired, and very sore from laying on his back, and in one position, for 6 hours, Dennis has completed day 1 of 2 harvest days. With both arms hooked to this machine (called a Cobe-spectra), a patient absolutely CANNOT MOVE their right arm for fear of dislocating the line.

Blood is being removed through Dennis' right arm, then runs through the machine where the stem cells are being retrieved, and then his blood is returned to him through his left arm. Amazing.

We will return to Karmanos bright and early tomorrow morning for another day of harvest.


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November 18 - In Detroit

Dennis and I are in Detroit tonight, staying downtown at The Holiday Inn Express on Washington Boulevard.  We will report to Karmanos Cancer Institute at 7:15 a.m. on November 19 so the doctors can begin harvesting his stem cells. We expect to be in Detroit for 2-to-3 days, until enough cells are retrieved for freezing. Dennis will receive his own stem cells during the transplant.

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