10 April

Mary spent a full hour doing physical therapy both upper and lower body.  The therapy was culminated by her walking about 15 feet to the door to the patio then turning around and walking out of the workout room.  Probably a total of 50 feet.  After therapy she rested a while and someone came to take x-rays of her pelvis.  This has been requested as Mary is feeling pain in that area and the oncologist wants to make sure that it is not a new area of "invasion".

After lunch we went out to the patio and sat in the sun for a while.  When we returned to the room, Mary asked to sit in the regular (padded) chair in the room.  She remained in that chair until after dinner.  She has not felt the need to ask for pain killers at all since the last acupuncture treatment.  I did massage the pressure points four times today.  Mary says that that helps.
 

11 April

Mary had therapy early, but it was split in two parts.  The walking portion came just before lunch and Mary walked over 150 feet. After therapy came lunch and the nutritionist gave Mary a spinach salad saying that it would be good with the chemo that she was starting. Mary enjoyed the spinach salad, but was then slow to finish the rest of the lunch.  She ate her green beans, but not the meatloaf. Dizziness, weakness, and nausea were beginning to take their toll. I hope tomorrow is better.

The x rays came and the radiologist interpretation was that there was evidence of osteoporosis.  (Multiple Myeloma will degrade bone the same.) The oncologist will have to look at the x rays to see if there is Myeloma present in the pelvis - there had been minimal invasion previously. I delivered the x rays to his office, but he was at another office. Hopefully he gives me a call tomorrow.
 

12 April

Mary's therapy was very demanding today with new devices (bicycle devise) as well as extra weights for the leg lifts. The culminating task was to walk using the walker back to her room, a distance of 200 feet.

In the afternoon, we had a meeting with the Social Services Director and the director of rehabilitation Therapy.  I thought they were going to outline what they felt they could do to help Mary, but the meeting started with the comment that Blue cross felt Mary should be there only seven days more.  When I asked why and they told me that they felt that Mary's rehabilitation had reached a plateau and was not progressing, I blew a cork and became very agitated.  Quickly regaining my composure I reviewed with them the progress that Mary had made within the last week.  They agreed that the reason was not accurate and said that they would talk to Blue Cross' representative again. I don't know how much more time that Mary will need, but hopefully she will be at a point where she can progress on her own at home before she is released.  Another option is that Dr Bessudo (the oncologist) will be able to get her admitted to acute rehab at Scripps.
 

13 April

Today was just another regular day, the kind you want to end so you can begin another full day.  During therapy, Mary found that her therapist will be leaving (being asked to leave).  We don't know why,  she is very good, demanding and efficient.  Mary will miss her and her rigor.  Mary walked 250 feet with her guidance.  Mary can also stand on her own when getting off of the commode. Tomorrow is minimal therapy, so I think we will work on trying to stand and I may try to get her to walk with me.

When I spoke with special services, they had not heard back from Blue Cross.  They thought they could get an extended stay.  It seems odd to me that the doctor in attendance does not feel Mary is ready to ride in a car (to go home for a couple of hours), but Blue cross is ready to send her home.  They cannot release Mary without the doctor's approval. I'm hoping we either get an additional week (to the end of the month) or that Mary gets selected for acute rehabilitation.  The more rehabilitation she gets, the better she will do once she gets home.  I'm afraid that she will try to do things she shouldn't and have expressed the desire that occupational therapy spend more time with her.
 

14 April

15 April

16April

What a difference a day makes.  Mary was relatively pain and nausea free.  She said that she had a very taxing workout and after her 300 foot walk, that she wheeled herself back to her room and later toured the facility by herself in the wheelchair. In her room she was able to go to each chest of drawers and find things she wanted all by herself.  When I returned from heating my dinner, she had brushed her teeth and put everything away.  The one thing that would make her feel really self sufficient would be to be able to stand on her own.  Many times it feels like she is doing it and that I am just guiding her, but at other times she needs a tiny assist to raise up the first 6 inches.

I am still trying to get responses from the doctor  and Blue Cross about the procedure next Tuesday.  She is supposed to get an infusion of zometa, a bone strengthener and I need to find out how long Blue Cross will continue to pay the oncologist who is treating her.  They just signed a special contract with him and I have heard conflicting stories of what is covered.
 

17 April

Mary continues to work hard at therapy and to extend her walking.  She still has difficulty standing on her own. Her pain is manageable and she does take pain killers in the evening.  The pain is at a level that the pills can control it. Three weeks ago they had a very limited effect.

Mary continues to take her Chinese remedy and does not have nausea.  Tomorrow will be the test as she begins her chemotherapy again for four days.
 

18 April

Nothing new to report. Mary continues with therapy and now has a walker in her room.  Standing is getting easier, but is still assisted.

I keep trying to get a hold of the Blue Cross case worker, but all I get is an answering machine.  He probably has caller ID and doesn't want to talk to me. He told me earlier that we could no longer see our present oncologist and that he would arrange the next appointment with a Blue Cross approved oncologist.  My next appointment (for treatment) is supposed to be Monday and I have heard nothing.
 

19 April

Mary is working hard on her therapy sessions, but the pain is coming back. No nausea today but the chemotherapy may be causing existing pains to intensify.  Two more days of dexamethasone then 4 days off again.  We'll see what happens.

I'm still having trouble getting a hold of the Blue Cross case carrier.  He called me during class and I talked to him briefly.  I paged him later in the day but he did not get back to me. I'm also trying to set up a meeting with an approved oncologist, but I keep getting put on voice mail. Hope I have better luck tomorrow.
 

20 April

Pretty much the same as yesterday.  Mary is eating well, but found the bed more to her liking later in the day due to the fatigue from the dimethasone.  Resting also makes the  pain better. The doctor wants me to start giving Mary the drug Thalidamide.  I will submit the prescription tomorrow.

I'm still battling Blue Cross (over two hours on the phone today) and will call their grievance number Monday to see if we can get a continuance of care
 

21 April

For some reason there was no physical therapy today.  We kept waiting, but no one came.

Both Gooby and Monica were here, so Mary got to see them both. The pain level was generally low and there was no nausea.

Tomorrow we begin the thalidomide.
 

22 April

No therapy today, but I expected none.  When Gooby arrived we put a safety belt on Mary and she walked from the nurses station to the kitchen and back - about 350 feet total. Today was basically spent relaxing.

Mary began her thalidomide today and will keep taking a minimal dose until we are instructed to increase the dosage by the oncologist. She is not taking the dexamethasone for the next eight days, but will then begin taking it again.
 

23 April

Therapy worked Mary hard today and she needed the rest afterward.  She  has an appointment tomorrow with the thoracic surgeon. Everything looks good on her back, although there is an area that was incised and it still discharges some liquid (three weeks later).

The insurance is talking about discharging Mary at the end of the week.  I want to get started trying to get her admitted to acute rehab at Scripps Encinitas.  If she gets in, it's a 12 day, 3 hours per day session.  I know Mary wants to get home, but she would also like to give the acute rehab a try.
 

24 April

The Blue Cross case worker did it to me again.  I got a call saying that there was a problem with Mary's transport to the doctor and it turned out that the transportation was not approved.  Luckily Gooby was still at home and brought his mothers van.  The physical therapy people helped her practice getting into the van and also into Sandy's Pathfinder.  The Lexis van worked best and so Gooby drove her to the doctor. We waited almost two hours to see the doctor.  He took a new x-ray and it showed that everything was still in line and that new bone was forming.  This was good news for us as I was concerned about further damage from the myeloma.
 

25 April

Mary had a fever this morning, so tests were done to see if it was anything serious.  This evening her temperature was lower, but 1 degree above normal.  As a result she spent more time resting today and did not do as much therapy.  She felt weak and had more trouble moving around.
 

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