4/12/11 Roller Coaster Going Down the Tracks

The Roller Coaster ride called Mantle Cell Lymphoma along with Myelofibrosis changed directions this morning by going down a big hill. If one does not have a mental illness before they get cancer, they sure will when experiencing all the ups and downs of fighting cancer. It wears both the patient and caregiver out. Trying to be positive takes great effort for the caregiver so your loved one does not seep into the dark side of depression.

For some reason last night I was a ball of nerves and stressed out way more than normal. I do the deep breathing my MPD support pal, Zhen, suggests. I did not try to fight it so as Joe went to bed. I stayed up until I calmed down. I find going to bed stressed and not able to sleep makes the stress even worse. So, I read, watch TV, play solitaire but I do nothing to add more stress such as doing taxes or straightening out health insurance issues. It is weird that I have no issue working on Joe's health insurance issues but when I get my own, I get anxiety. On January 1 of this year, I had to join Medicare which I did parts A and B. I kept my health insurance retirement coverage from HSBC. Medicare does a good job handling the claims but the United Health Care PPO makes it more difficult than it needs to be. I appreciate the Medicare website where I can print up the Explanation of Benefits. I also am able to print up United Health Care denials of every single one of them stating that I have some other health insurance coverage other then Medicare. Where the hell did they get that idea is really strange to me? I have had United Health Care (UHC) for 20 years or more with HSBC. I printed everything up today and matched it all to try to figure out where the bottleneck is. Tomorrow I will call UHC. Ugh! I HATE having to deal with that and it does stress me OUT! I wish I had an advocate for me like I am for Joe. I am sure God thinks I can handle it and handle it, I will. Now, Bonnie, Zhen says take some deep breaths.

Now the roller coaster down slope! I received an e-mail from Dr. Romaguera, Joe's Lymphoma expert at MDACC. He had reviewed the CAT scans of the groin lymph nodes and this is what he said.

"Compared with December, retroperitoneal nodes shrunk from 1.12 X .84 to .49 X .52.

I would recommend trying to get cycles 7 and 8."

Retroperitoneal lymph nodes are lymph nodes located in the retroperitoneum. The retroperitoneum is an area at the back of the abdomen behind the intestines. If anyone knows the normal size of retrperitoneal lymph nodes are, please let me know. From Dr Romaguera's measurements, it seems that they must be pretty small to begin with.

So, it means that Joe and I are headed back to Houston for another extended stay for 6-8 weeks. Joe will be re-admitted into M D Anderson Cancer Center on 4/27 for Part A of the HyerCVAD-R for six days then have two weeks off before entering back into the hospital for Part B which is the hardest one on Joe. We trust Dr. Romaguera's judgment. If he believes Joe needs more chemo, then he needs it. Dr Romaguera's goal is to save Joe's life and extend it as much as possible. He says Joe did extremely well with the chemo compared to most people including much younger ones.

Tomorrow morning Joe has a 7:30 AM appointment at Winship at Emory for a CBC test. If Joe's hematocrit is over 48, he will get a phlebotomy which is taking blood out of his body. I am sure that he needs to have one since Joe's face is so red. I remember that sign when Joe was tackling with Polycythemia Vera (PV) for 12 years. Joe has been very tired for about 5 days so I hope that getting the phleb will enhance his energy level. I also have some concern about Joe's appetite which I have been watching carefully. It has been a bit better the last two days but I got plenty of Ice Cream and Fortified Ensure to make a calorie laden milk shake to get good nutrition in his skinny body.

I also got another call from Joe's local dermatologist who did a biopsy last week on a growth on his neck. It is squamous cell cancer so we will go back to see him next Tuesday to cut it out and stitch it up. Dr Braza froze some of the pre-cancerous spots on his face last week. Joe has had issues with basal and squamous cell cancers on his face for many years so this is not a new issue.

I have my appointment with the orthopedic doctor with give that shot into the shoulder joint along with future Physical Therapy. The problem for me is that we are heading back to Texas so I suppose I will start the PT in Houston, somehow and sometime which causes me some additional stress issues since I can seem to follow through on treatment with physical therapy. The shot helped reduce the pain by 60% and gave me more arm movement the last time they did it at the end of January.

Today I had my visit with my periodontist, Dr. Gary Greenwald, in Norcross. I had missed several follow up appointments so it was catch up time which I was dreading. I HATE going to the dentist. I hate getting my teeth and gums picked at but I do it since I have to. He had the dental hygienist put some antibiotics to both upper sides of my rear teeth to assist me with the habitual periodontal disease since he is now aware that I can not keep up with the follow up appointments because of Joe's cancer fight. Dr Greenwald is also Joe's periodontist and he is aware that Joe can not have periodontal work while his immune system is compromised.

Joe is suffering from a bit of melancholy (blues). When he gets that tired feeling, he gets down. He would never use the word "depressed." I try to keep him focus on our Easter 5 days mini-vacation to Cape San Blas with our two sons and two beloved granddaughters next week. We are both looking forward to being with our kids that is out little "oasis" of fun and love.

The Evans' Roller Coaster keeps trucking along on its tracks. I hope the next roller coaster ride is a little kids one since we need a respite that lasts longer.

Ciao!