Dedicated to the memory of Mike Oliver  

Journal 

August 2003

  • 26 – Mike is diagnosed with POEMS syndrome.
  • 26 – Mike begins taking prednisone (a steroid) orally.
  • 27 – Mike’s comments on chemo session #1:

The actual procedure was not nearly as complicated as I anticipated it to be.  I’m not really sure what I expected, but it turned out to be pretty uneventful.

I went in for the appointment as an outpatient with Karen and Mom.  We were taken back to a very small room and I sat down in a comfortable chair.  The nurse came in, ran an IV in my arm, and I sat for about 45 minutes to receive anti-nausea medicine.  When that was done, she brought in the chemo medicine.  It took about an hour for that to drip in and then I went home.

Fortunately, the first experience was not too hard on me.

 

September 2003

  • 2 – I stopped taking the prednisone.  I had 5 days of 100mg and 2 days of 60mg.  Karen called the oncologist to discuss the problems that I was having.  The doctor said that I was having hallucinations and that I could discontinue taking it.  I was SO relieved!
  • 3 – Went to visit the nurse to check my blood count.  She told me that the chemo was doing its job.  Good news!
  • 10 – Went to visit the nurse to check my blood count.
  • 17 – Had lab work done for the oncologist to review.
  • 17 – Good news!  Today was the first time I went to get weighed and did not lose weight.  I visited my oncology doctors to review my blood work and get the latest and greatest news.  They were surprised to see me and remarked how much better I looked since the last time they had seen me.  They told me that my blood work looked very good and all of my counts were in line.

I go back to see them in 3 weeks and they will determine then if I need to have one more chemo session or if I can begin preparing for the stem cell transplant. 

Unfortunately, I have to go back on prednisone, but only for 5 days and at a lower dose.

  • 17 – Mike’s comments on chemo session #2:

I went in for this appointment with Michelle and Mom.  The      

procedure was very similar to the first session.  I noticed an upset stomach, headache, and nausea, but had an overall good experience.

Michelle’s comments on chemo session #2:

Based on the notes above, I had an idea of what to expect, but was not entirely sure about how it would really be.  I was pleased about the news that we received from the doctors and was ready to get the show on the road.

After checking in, we were called to the back.  The area was set up in two different ways-one section was for people to sit in chairs to receive the chemo, the other was for folks to lay down on a bed behind a closed door.  We had a nice space by the window and dad sat in a chair.  Unlike the first time, he had earphones and a tv to watch during this session.

While the nurse was setting dad up, grandma and I went down and got him a nice chicken salad and fruit plate.  We all sat there together and ate and waited.  That was it.

  • 18 – Started 5 day session of oral steroid, prednisone.
  • 23 – Started back on home physical therapy for my legs.
  • 24 – Went to visit nurse to get blood count.
  • 25 – Had home physical therapy.

 

October 2003

  • 1 – Went to visit nurse to get blood count.
  • 8 – Big day!  Went to the lab to get blood count.  I did not lose any weight since the last time.

Later met with the oncologist to determine the next steps.  The good news is my counts were excellent.  Today my blood cell counts looked like this:

 

Hgb

Hct

RBC

MCV

MCH

MCHC

RDW

WBC

Platelet

MPV

15.5

46.3

6.04

76.6

25.6

33.5

16.6

7.3

415

6.3

 

The bad news is the process will take a lot longer than we initially anticipated.  Today I did complete my third session of chemo.  In 3 weeks, I will go in for a 2 day high dose chemo session (this will take place on a Thursday and Friday).

The following Monday I will begin a 5 day process of getting shots to “stimulate” my stem cells.  This stimulation is supposed to push them out of my bone marrow into my blood stream.

The following Monday I will go through the stem cell collection process.  It is supposed to take 2-4 days.  Then, I wait 4 weeks.

So, some time mid-December I will go into the hospital to go through the transplant.  I’ll be in for 3-4 weeks.

           ·        15 – Went to the nurse to get my blood count. 

November 2003

·        4 – Went for a series of tests: lab, rad chest x-ray, pul med complete pft, and electrocardiogram.

·        5 – Went to see the oncologist and transplant coordinator.  We discussed the timeline for the next several weeks.  Even though I don’t like it, Gidge (the dog) will be staying with a friend for the next few months.  My family thinks it is too risky.

·        6 – Mom took me in at 8:15am for my first high dose chemo session.  It was a 5 hour ordeal.  We decided it would be more convenient to stay overnight at the Courtyard Marriott on the Mayo campus tonight.  So, Michelle and I went to the room after the 5 hour session and waited for the next session at 5pm.  Today I had a new medicine with my treatment-mesna.  It is supposed to help protect my bladder from damage.

We were not sure what to expect after the big session today.  However, the evening progressed pretty smoothly.  (With the exception of starting another 5 day stint with prednisone)

·        7 – (Notes from Michelle) What a DAY!  Today felt like the “old days” from the summer.  I woke dad up at 6:30am to start the morning.  I immediately noticed that his face was red and swollen.  When he sat up, I saw that his stomach was swollen.  He told me that he wasn’t feeling too well and was nauseated.  I got him to eat a piece of toast and some grits.  Krystle came around 7:15am.  Dad seemed to feel a little better, so we got him ready and pushed him over to Mayo.

Once we got into the room for the chemo treatment, all hell broke loose.  Dad’s face got real red again, his face and stomach were swollen, and his nausea was increasing.  The nurse became concerned and started asking dad questions.  She wound up calling the oncologist over to take a look.  Dad then fessed up about having chest pains since 3am.  SIGH!  So, he became the immediate lucky recipient of an ambulance ride to St. Luke’s emergency room.  This means that he missed his second day of high dose chemo.

Dad had a total of 7 nitro tablets, aspirin, and some other select items to help him get in check.  There was an immediate concern given his heart history.   The good news is that he is now stabilized.

The oncologist called me in the afternoon to check on him and to advise of the affect this would have on his schedule.  If dad goes home over the weekend and is feeling well, he can continue on his schedule.  (He is supposed to go Monday to have labs and get a neupogen shot to stimulate his stem cells)  Hopefully, the one day of high dose chemo will be sufficient and we won’t miss a beat.

·        10 – The one day was enough, so I was able to continue with my schedule. Went for lab work, and then started neupogen shots.  I got one shot in each arm.

·        11 – Day 2 of lab work and neupogen.

·        12 – Day 3 of lab work and neupogen.

·        13 – Day 4 of lab work and neupogen.

·        14 – Day 5 of lab work and neupogen.  Today is another BIG day; a hurdle crossed.  Today I had a Quinton cath inserted to prepare for the stem cell collection.  I also received the news that my cell counts were right and they would start collecting today.  Michelle and I were SO excited-especially Michelle.

Quinton cath – All we knew was that it would be inserted in my neck (jugular vein).  They let Michelle be there with me until they actually took me in the back for insertion.  The procedure itself did not take too long, but it is uncomfortable to have in.  After we were done, Michelle took me down to the Apheresis Lab to get started.  We were warmly greeted by 3 wonderful women.  I got settled and started the process.

Stem Cell Collection – The process itself was no big deal.  I just lay on a bed and watched tv.  The machine that is used to collect the cells connects to the Quinton cath and flow through.  The machine is able to “pick out” the stem cells and collect them.  The process is complete when they have collected 5-6 million stem cells.  It can take 2-4 days.

·        15 -  Back for day 2 of stem cell collection.  I’m hoping to complete the process today so that I can have the Quinton cath removed.  It is very uncomfortable.

December 2003

·        12 – Today is the BIG DAY.  Mike checked into St. Luke’s Hospital at 7:30am.  Went back to Interventional Radiology and had a Hickman cath inserted.  He was then taken up to his room in the Bone Marrow Transplant Unit (BMT).  Today’s blood cell counts look like this:

 

Hgb (in millions, M)

WBC (in millions, M)

Platelets (in thousands, k)

12.6M

6.7M

427k

 

·        13 – Had 1 hour of high dose chemo at 8am.  He started feeling “weird” shortly thereafter.  Betty noted that he was acting confused.  Mike slept most of the day and noted nausea 6 hours post chemo.  Today’s blood cell counts are:

 

Hgb

WBC

Platelets

12.3M

6.4M

408k

 

·        14 – Saddam Hussein captured-BIG news.  Had 1 hour of high dose chemo at 8:35am.  Again, Mike was slightly confused and nauseated.  He ate very little for breakfast and slept most of the day.  We hope that he sleeps as much as possible.  Today’s counts:

 

Hgb

WBC

Platelets

12M

5.9M

398k

 

·        15 – Had a transfusion today from 11am – 12pm (total of 4 bags).  We were given the name of a previous POEMS patient and she agreed to talk with us.  We were joking that Mike was on some serious stuff when he told us “Some times you don’t feel like nothing, but some times you feel like a nut, and some times you don’t”.  Today’s counts:

 

Hgb

WBC

Platelets

11.7M

4.4M

323k

 

·        16 – Day +1

Not a good day.  Mike vomited for first time, he was very angry.  Today’s counts: 

 

Hgb

WBC

Platelets

10.5M

3.7M

244k

 

·        17 – Day +2

6:15am and Mike is sleeping soundly.  Had some exercise today.  He is resting well today.  Had 2 pain shots.  Today’s counts:

 

Hgb

WBC

Platelets

11.4M

5.6M

251k

 

·        18 - Day +3

Mike is very nauseated and weak today.  He is also very quiet.  Today’s counts:

 

Hgb

WBC

Platelets

10.7M

4.4M

158k

 

·        19 – Day +4

Mike cannot keep food down today and is very sick.  He “hears” kids running around and cars starting, but cannot see them.  He could not keep his lunch down and is very moody.  He insists on keeping the room at freezing temperatures.  Today’s counts:

 

Hgb

WBC

Platelets

10.2M

2.1M

111k

 

·        20 – Day +5

Mike is very tired today and did not eat much.  He is developing sores in his mouth. L  He slept most of the day and had shots at 7:30pm to go to sleep.  It is very hard for us to see him like this. 

It’s important to note at this point the significance of posting the daily cell counts during this period.  His WBC (white blood cell) count has to get down to zero (to ensure all old bad cells are gone) and then he starts to receive neupogen shots to stimulate growth of good cells. Today’s counts:

 

Hgb

WBC

Platelets

10.2M

0.7M

68k

·        21 – Day +6

Mike is very tired and nauseated.  He received his first round of neupogen shots today. 

It’s important to note here the significance of the classification of the days (Day +1, Day +2, etc.).  Every day is a step toward the end and we are looking forward to Day +10 because we should start seeing a turn for the better in this process.  Today’s counts:

 

Hgb

WBC

Platelets

9.7M

0.3M

37k

 

·        22 – Day +7

Mike is still very tired.  He will start IV food today because his mouth is so torn up with sores that it is very painful for him to eat. L  He was fairly unresponsive today and looks pretty bad.  It was another hard day for us to see him like this.  Today’s counts:

 

Hgb

WBC

Platelets

10M

0.1M

14k

 

·        23 – Day +8

Mike received 1 package of platelets.  He is very sick and is running a temperature between 99 and 101 degrees.  He is very out of it and is not responding to us 

 

Hgb

WBC

Platelets

10.7M

0.1M

6k

 

12:10pm – Temperature is 101.8.  The doctor ordered him an antibiotic and he was given kytril for the nausea.

3:40pm – Mike was transported to ICU and our whole world fell apart.  His blood pressure was 78/34 and he was unresponsive.  By this time, he has received 2 liters of platelets and 3 liters of blood.  His temperature is ranging between 99 and 103 degrees and his WBC is ZERO.

7pm – Our family has been gathered here since we got the terrible news.  The ICU attending physician came out and told us that Mike would probably not make it through the night.  We were completely devastated.  We couldn’t believe that this was happening.  We began an 8 day stay in the waiting room that would bring many ups and downs.

3am – Mike’s blood pressure stabilizes and his fever broke.

4am – The lab work indicated that Mike’s Hgb remained at 10.7 and his WBC had moved a little to 0.2.

This night was one of the longest.  We would like to note that the ICU waiting room was absolutely WONDERFUL.  We walked down to stand outside Mike’s room every 30 minutes.  We were quiet and respectful of all other patients and appreciated the opportunity to just look at him. 

It is also very important to mention that we were BLESSED with a compassionate and DEDICATED nurse this first night.  John Adkison never left Mike’s side.  We are ETERNALLY grateful to him and credit God and John with Mike’s “making it through” that first night. 

 

·        24 – Day +9

It’s Christmas Eve, but life has stopped for us.  Our life is consumed with prayer and tears for Mike.  Many co-workers came throughout the day to offer support.

12:30pm – Mike had a little physical therapy.  His WBC is at 0.3 and his blood pressure is steady.  They are going to back him off of the blood pressure medicine and epinephrine.  They are telling us that they may take out the trach tonight or tomorrow.  He is breathing at level 9, the trach at level 10.  It appears that he has an infection in his left lung; his chest x-ray came back good.

11:10pm – Mike’s WBC count went back down to 0.1 from 0.3.  He had a reaction to a sedative that caused a high heart rate.  He is stabilizing now and received another unit of platelets.  We visited Mike every 30 minutes for the 2nd night.  We just had to go and look at him, even though he never knew we were there.

We would like to note that we were BLESSED with another night nurse, Jay Christopher.  We would have him a few more nights, and he was just wonderful to work with and we appreciate him so much.

 

·        25 – Day +10

7am – Mike has good color this morning.  His blood pressure is 116/85, his heart rate is 92.

9am – His face is kind of red.  His WBC is up to 0.2, platelets are up to 14k.  The neurologist visited him and performed a brief evaluation.  Mike did well; he lifted his knees, squeezed hands, and waved.

6pm – He had the trach removed!  We were SO excited for him; it was like another miracle and step in the right direction.  They are weaning him off of the blood pressure medication, but he is on a multitude of antibiotics.  He is starting to swell up from fluid retention, but had a fairly good night.

It’s important to mention a day nurse that we had for several days-Larry.  He took very good care of Mike and we appreciate him very much.

 

·        26 – Day +11

5:15am – Mike is stable.

5:40am – We go to visit him one more time before the shift change.  We noticed Mike getting agitated, his blood pressure and heart rate rose.  Jay and the attending physician came in to get him stable.  It was another scary time for us.  His weight is up from 169 when he entered on December 12 to 217.  Counts:

 

Hgb

WBC

Platelets

9.8M

0.7M

26k

 

·        27 – Day +12

We are ABSOLUTELY THRILLED to find out that Mike’s WBC is up to 3.7!  It is a quiet morning, the day progressed well.  Mike performed physical therapy and did well.

5:30pm – Mike had a few sips of Sprite and a few bites of jello-his first since December 21.  He sat up in the bed and talked to family.  It was SO WONDERFUL.  We finally we letting our guards down and were excited and hopeful.  The fear was leaving us.

7:25pm – Everyone had gone home to shower and change except for Karen.  We were all so sure that the hard times were over…Then, we were back to ground zero.  Karen heard a code blue called over the intercom for ICU.  She RAN back there and her worst fears were confirmed-it was Mike.  The whole family RACED back to the hospital and was just feeling scared and defeated.

They put the ventilator back into him and we all wondered how much progress was lost.  Tammy came up and stayed with us.  They let us go back and see him when he stabilized.  Tammy and Krystle kept watch over Mike tonight.

·        28 – Day +13

They removed the ventilator this morning.  Betty, Michelle, Krystle, or Karen stayed with Mike all day.

5pm – Mike drank apple juice and ate apple sauce.  He also ate chicken broth and jello.  It was like jumping hurdles, but it was hard for us to forget the fear.  Counts:

 

WBC

Platelets

Weight

10.8M

28k

202 lb

 

·        29 – Day +14

Today was fairly quiet.  Mike’s WBC is at 15, which indicates that infection is present.  His weight is 197.

 

·        30 – Day +15

Today is a GREAT day!  Mike is moved out of ICU in the late afternoon and went back to the Bone Marrow Transplant unit.

 

The ICU period was a painful, emotional, and scary time for us.  We just thank our family, friends, co-workers, doctors, and nurses so much for their support, work, and dedication.

We had people cook for us, pray for us, visit us, stay with us so we could sleep, and cry with us.  We are so thankful for all of them.  

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