This is Pauline, Boone's wife. Every year on or near his birthday, he has his annual physical. His doctor told him that he had "Immature blood cells" and referred him to a hemotologist. To Boone's great surprise when he arrived for the appointment, the hemotologist was an oncologist. They drew blood and the Oncologist, Dr. K, wanted to know why I was not with him. Next visit he said, I better be there. A month later, we went to the appointment. Blood was drawn. Dr. K. said it could be a couple of things, and ordered a bone marrow biopsy. On the 3rd month, we heard the diagnosis of CMML.

Sunday, May 19, 2013

Here we go again...


Pauline here.
(Sorry about that title line...Blogger wouldn't let me post without a title.  grrrr.)

Actually I believe this is day 79.  March has 31 days minus the1st which was day Zero. April has 30 days and now this is May 19.  If my math is correct, 30+ 30+ 19 = 79.  

Day 79 was definitely better than day 77.

Day 77 was the normal 7:15 AM clinic visit.  Boone was feeling pretty bad; after all he had the colonoscopy the day before.  As we all know there is the day of fasting,  and the day of the procedure.  Not much eating happened on the scoping day, he just didn't feel well enough to eat.

When we arrived at the clinic, there was no one at home.   Peculiar.  I knocked on the door, knocked on the back door, no response.  I called their number and got a recording saying they were closed and didn't open until 8 AM.  Peculiar, our appointments are always before 7:30.  Boone was miserable.  I went outside, I've forgotten why, but in the process I ran into two other patients and spouses that were there for early appointments.  One of the spouses, who is a nurse took charge and went somewhere in the dark halls of SCCI and found a lone nurse lurking in the office.  

By the time she was coming back with the good news, I had retrieved the wheelchair that I had forgotten about, and had gotten Boone in it.   We headed for the elevator, and the suddenly in front of us was Dr. S. looking very dapper in baby blue.  (It highlights his blue eyes.)  He had taken one of the patients who's wife was struggling with her large husband, gotten him in his wheelchair and was pushing him up to the clinic.  I followed him pushing Boone in his wheelchair.  He was not happy about the mixup, and promised me they really have their ducks in a row....apparently they missed calling 3 patients to reschedule to later visits.

By this time, Boone was slumped over with his head in his hands trying to not feel so sick.  I was visiting with the other couple in the room.  At one point the patient pulled his mask down...I had no idea he looked like that!  Talked to him many times, never saw anything but eyes.  HIs wife, the nurse was loaded with all sorts of info, like one man that had been in the hospital on the BMT ward for over a year...OMG.  I can't even begin to imagine.

After a short wait, we were ushered back to the exam room.  Boone weighed in at a strapping 116 pounds.  (Oh how I wish I could weigh that little again - it only happened for 1 day, but it was great!)  

His thighs are thinner than my forearms.  They immediately started up an IV of saline.  That's an hour drip.  The results of the colonoscopy were supposed to have been sent to Dr. S., but the Pathologist hadn't sent them up yet.  

Boone finished up his drip and we went home.  Both of us were exhausted and went to bed to catch some z's.  As always, I turned the ringer off on my phone.  After about 5 minutes I opened my eyes and decided to check the phone.  There were 2 messages from an unknown number within a couple minutes of each other; so I called back.  It was the LPN at the clinic.  She said Dr. S. wanted Boone back in the office ASAP.  Bring a bag....

I went to wake Boone up to tell him.  He broke down.  He knew they would put him in the hospital. 

They said he had an infection in his GI tract and had to be admitted back onto the ward.  Boone was miserable.  Sick. Unhappy. Tired.

They set up a CT scan that required Boone to drink 2 quarts of that nasty gut cleaner...again. I left the hospital to get the dogs & Leukka and head to the farm. Nothing more I could do for Boone. At least the dogs and cat could run a bit out there.

The infection has not yet been specifically identified. A specialist is coming in tomorrow to see if she can figure it out. They put Boone on IV food at the rate of 7000 calories per day. He's gained a pound already.

He slept pretty much all day Saturday, but today, he was feeling better. His skin is so silky smooth. No psoriasis to be seen. He was rewarded this afternoon by being put on soft foods rather than being NPO. Ice cream.

We don't know yet the criteria for release. Kill the bug? Gain X amount of weight? Or just feeling much better and eating?

He's asking for his book and reading glasses. Excellent.



4 comments:

jan spooner said...

Hi Boone and Pauline, just read your blog and am feeling your pain as well as your victories. I am Jeri's sister and it is our brother who also has cmml and will undergo stem cell transplant soon. Thank you for sharing your experience. It means a lot to us to have a "friend" out there who has already been through this procedure. I so wish you well. Though a stranger, I identify with so many of your trials as our family has already endured similar and like circumstances. Prayers and well wishes from Alabama, Jan

Harold said...

So glad he is better. When I was there, he just wanted to sleep. Could tell he felt like crap. Let me knowwhat I can do.

Anonymous said...

Sorry for the hospital stay AGAIN, but I also just keep thinking, I AM SO GLAD HE IS HERE!!!. Rest up big brother. The day you are Cured will be here soon. I am excited to hear that your skin is cured! Mine is getting worse not better so I was afraid it would not cure. Small celebrations are better than no celebrations.

Love you,
Donor

Anonymous said...

Quite the adventure this has become for you guys. I really feel for you both.

I hope he meets whichever criteria is decided upon for release and does so soon.

Please give him my best. Thoughts and prayers for you both.

-B