Released on the bone front

We visited both the oncologist and orthopedic doctors on April 28th. Since we weren't able to visit the cancer clinic in advance of our appointment, the doctor didn't have recent blood work to review with us. He said that even though his blood work taken at Friendship looked good, he would like to do at least two more cycles of Velcade, Doxil, and Dex.

We had Peter's port flushed and labs drawn. We will begin our next cycle next Monday.

The doctor was also concerned that Friendship refused to give him his allupurinol for uric acid and had only been giving him half doses of his Bactrim antibiotic.

We let him know that we had been in contact with the Huntsman Institute in Salt Lake City regarding the possibility of a tandem bone marrow transplant since VCU couldn't do that due to Medicare. It's sounds promising.

Our visit with the orthopedic doctor also went well. It's hard to tell if his leg is actually healed or not due to the black area of the bone lesion from the Myloma, but the doctor didn't have any reason to believe it's not. He said his arm and shoulder definitely showed healing.

We were somewhat surprised that he did not prescribe more physical therapy. He said he didn't see any benefit. When I asked about the rotator cuff issue, he said that Peter truly doesn't have a rotator cuff issue and that it is simply the fact that the Myeloma had deteriorated the bone. He said all the physical therapy in the world won't fix that and that there is no way to do surgery because there is nothing left there to attach new parts to in order to fix. Rather depressing, but Peter was glad to be done with physical therapy.

Physical Therapy Problems

I think we've been very lucky over the years in only dealing with the oncology side of the medical field and having the good fortune of a great medical team on our side.

Since we've entered other realms of the medical field it has been extremely frustrating.

There seems to be a conflict between the oncologist and the orthopedic doctor. I sat in on a teleconference two weeks ago that was on bone health in Myeloma patients and it was very interesting. It would seem that these fields should work together to ensure the best care for the patient and his bones. The oncologists are not trained in reading x-rays or in totally understanding bones the way orthopedic doctors are. There was even mention on the call that the best scenario is to find an orthopedic oncologist. I didn't even know there was such a thing.

The most frustrating thing we seem to be finding is that there is a huge disconnect between the orthopedic doctor, whom we like and trust, and the physical therapists. None of the therapists seem to agree except on the fact that they are on the other side of some imaginary line from the doctors. This is totally ridiculous and not in the best interest of the patient.

The doctor told us in March that the bone should pretty much be healed at 4 weeks and gave us approval at that time to put 50% weight on it. It was almost 4 weeks before Pete returned home, much to the dismay of the physical therapists at Friendship.

After returning home and after the 4-week period, he received an evaluation from the Home Health agency that would be providing in-home physical therapy. It was almost a week later before the first therapist arrived to begin working with him by the time they received the doctor's orders and got insurance approval.

They were not happy with the fact that he wasn't putting weight on his walker and was only walking behind it. We saw two different therapists and both had opposite opinions. One believed that the time that had passed and the fact that Pete was not feeling any pain from this action didn't believe it was going to do damage. The second therapist believed, and made a big deal out of it, that pain was no indication.

The doctor had told us in March that Pete would know if he put too much weight on his leg because he would feel pain. Now we were confused. I was very frustrated that we can't all be on the same page.

There was also the issue of what would happen on April 28 (almost 8 weeks after surgery) when he had to go to his doctor's appointments. The therapists seemed to think that he would need to go by ambulance.

I called the doctor's office after the second therapist left and expressed my frustration and asked the questions. The nurse checked with the doctor and returned my call to say that the doctor said that it would not hurt him to put more than 50% on his leg as long as it didn't hurt and that pain should be his indicator. He also said that at the time it came to go to appointments he would be fine to go down the 4 steps for the shortest exit from our home to the car. I asked that she put this in writing and mail it to me so that I could show the therapists.

What I was mailed didn't say the same thing that the nurse said on the phone. I had explained the call to both therapists before I received the written notice. This actually made everything worse! Now we had the therapists, the doctor, the nurse, and Peter who was fed up with everyone and going to do what his body was telling him was right.

The therapists don't know it, but he's started just walking around the house without the walker at all now. This probably isn't the best thing and I have tried to explain this, but I do understand his frustration and desire to put this all behind him.

We plan to just ignore all this conflict and do the best we can, not pushing it too much, and when it comes time for the doctor's visits he'll just walk down the stairs and off we'll go. If there is pain to go down the stairs, then he can slide on his butt. We'll manage.

Can't we all just get along?!!!

Pete's Home

Pete couldn't get approval from the PT folks to come home on Friday, April 4th as he had planned. They only allow check-out of Friendship during certain hours and PT insisted that he need to have a full week of therapy.

The experience at therapy has been most unpleasant during this last week there. Because it is the job of PT to ensure the greatest success and safety at home, they have been bombarding him with propaganda on how he needs to stay at Friendship for 2-3 more weeks.

Pete is sure, and I have to agree, that most of the patients they have are older patients or people with more permanent disabilities. For them, they need all the help they can get. Pete will be at his 4-week stage on 4/10/08 and should be healed for the most part at that time. There's no guarantee of course and it could be later in the month. We will not know until we return to the doctor for the follow up x-rays on 4/28.

On 4/5, Pete came home that afternoon by ambulance. This was the only way that PT would allow him to return home because of our steps. The day before I received a delivery from a home health company of equipment that PT ordered for him to use.

I was very frustrated because his first night home he wanted to finally have his much needed shower. He refused to use the shower bench at all and simply stepped into the tub. I was furious since he had to stand with all his weight on his broken leg to make this transition.

At this moment, all of the equipment that was delivered except for his walker is sitting in our front room awaiting pick up from home health. He refuses to use any of it for the week or two he has left. I have my doubts about his healing for this final week or two with the weight he is putting on his leg. Men!

I find myself absolutely exhausted. I have a lot of work to do for my home-based business and am having difficulty finding the strength to do it. I worked non-stop late last week and all day Saturday until he returned home to clear a lot of clutter out of the way so he could easily get through with his walker and to make it nicer to come home to than when he left.

A home physical therapist will be starting to work with him on Thursday. It was to have been Monday, but Pete put it off until Thursday to have a break.

Thankfully we're both tired enough that we sleep well at night without any assistance from drugs and sleep in each day.

My son will be leaving on 4/14 to move to China so it will be just the two of us from here on out...and two cats and a dog.