March 2017 update

I have been derelict in avoiding posting for these many months since May or June of 2016.  There have been many changes; for example the daughters persuaded us that the time had come to get serious about down-sizing and we spent weeks thinking about moving into a smaller house but there were not any available in a setting like we had on Kings Hill Drive and we diid not want to consider moving to the valley where affordable house could b be found

Information on Wellness Center activities prior to next appointment at BMT clinic in May

BMT Clinic May 20th.  I go to the BMT clinic every 30 days for flushing of my dual chamber port and the next appointment will be next Friday.  The printed schedule that I provided to Shauna Nebeker, manager of Visiting Angels, provider of drivers for My visits to the Wellness Center, showed 2 trips on next Friday; this one to the BMT clinic at 11:00 am and one to the therapy pool at 2:00 pm. so I called Shauna to tell her that Emma will drive me to the BMT clinic, which she prefers to do because she likes to keep up with activities at the BMT clinic. Sometimes on these-one day visits one vial of blood is drawn and I have to wait for the results to be posted and I have to wait and this may happen Friday, but there should be enough time between the 2 appointments.

I am finally getting the hang of riding the Acorn stair climber, even though it is much slower than walking up would be.  Emma wonders if I made a mistake in buying it and I have to remind her that
Dr. Wilson told me that I should move our bed down to the main floor or install a Stair Climber and neither one of us wants to sleep on the first floor again.  I do miss the exercise I get by walking up the stairs.

I will try to fill in some of the blanks in the blog since the March 21st post

Some noteworthy, even traumatic, events happened between the last 2 posts and I don't remember why I didn't think to post about them at the time(s).  One of these was the night of March 9 when I was transported to the ER at St. Marks Hospital.  I had been suffering with diarrhea all day and nausea much of the day and could not keep any of my dinner down.  This had been triggered by me taking a substitute medication for the omeprazole, which I had run out of and the new order from Humana's pharmacy had not arrived. (Side effects from the new pills were listed as diarrhea and nausea, which had begun almost as soon as I began taking them, and got steadily worse, until that evening.)  I had thrown up all over myself while sitting on the Family Room couch and Emma could not help me get me up so she called Nancy and the two of them called 911 again.  I spent the night in  Marks Hospital after they could not determine what was wrong and found a room for me.  I was discharged the next morning and told to go see my primary care doctor whose office was in the office wing of that Hospital.

Emma came to pick me up and I saw Dr. Kuo before going home and  I asked him about draining the bursa on my right elbow; he told me it could be done but he strongly advised against doing so because of the very significant danger of getting infection in the elbow.  I accepted his recommendation although I am still annoyed with his tight wrapping of the bursa back in December.
Emma had canceled my appointment with our dermatologist, Dr. Horsley, that morning before she knew what a short hospital stay I was having, but I was able to get in to see him 2 days later and his advice about draining the bursa was the same as that of Dr. Kuo.  This should mollify Mary Steinbach and Jennifer when next I see them.

I had a follow-up appointment with Dr. Wilson on April 5, which was preceded by Hannah timing me doing all of the exercises that I have been doing for therapy since I started doing them at the Wellness center.  Dr. Wilson had these results. but didn't mention them in her review.  She just told me she wants to see me again in 3 months and suggested that we move our bed to the main floor of the house or perhaps invest in a mechanical stair climber.  Nancy had driven us to the hospital and soon started sending me, by e-mail, information on stair climbers such as companies that handle them and places to buy or sell used climbers, with phone numbers and addresses and her recommendation that I follow through, which I am sure she sent to her two sisters.  I did not use any of her info, but I did go back to my 2014 diary enter about my contact with Acorn Stair Lifts and called them.  They didn't recognize me by the new phone number, but when I told them what our old number had been they found a complete record of the call and subsequent visit to the house by a representative and his notes and measurements.  I then talked to a technician and he told they have a representative living near us and he could install a stair climber in a few hours for only $3,600.  I told him they were going to do it for $2,500 in 2014 and he said he would have to get that price authorized by his Superior, which didn't take long and I accepted the deal.

Short visit for labs only today

We left early; as we usually do when Emma drives and as a result we finished at 10:30, so we went down to the Wellness Center where we had an appointment at 1:00PM hoping that they could work us in early.  Linda went to their gym to learn whether this was feasible and came back to ask whether we could wait 10 minutes and of course we could so I asked her to schedule visits through the month of April so I now have appointments scheduled on Tuesdays for the Wellness Center and Fridays for the Therapy pool in the Orthopedic Center.  These visit are more to my liking with more favorable times, which will please the Visiting Angels drivers.

The visit at the BMT clinic only entailed a blood draw and delivery of a 24-hour urine collection, which seems to always be requested on a Sunday when Nancy's family has scheduled a family dinner.  The gathering yesterday was a belated birthday celebration for Laura who was actually born on March 4 25 years ago.  We had prepared a monetary gift for her actual birthday so didn't feel obligated to take another gift yesterday.  Before leaving the clinic I asked the receptionist to schedule 2 appointments at one month intervals to have my port flushed, and after waiting some time for her to finish a phone call I was told that my Patient Coordinator will make those appointment and then call me with the schedules.  I could see Emma waiting quite impatiently, in the waiting hallway.

First visit yesterday to BMT clinic since December 22

Dr. Atanackovic changed my Myeloma treatment schedule when I saw him last month.  He has put the treatment on hold for an undisclosed reason, but possibly to determine the cause, or causes, of my frequent falls.  I have 2 more 2mg methyl prednisolone pills to take at 4-day intervals and the Velcade infusions have been stopped.  My visit yesterday was to receive an infusion of Zomera as a substitute for Aredia.  I understood that this change meant that I would only be at the clinic for 20 minutes instead of 4 hours.  Camille, my nurse for the day, set me straight on the amount of time we would spend at the clinic.  The appointment was at 2:00 and we weren't ready to leave until almost 4:00 and needed to make a lab appointment in late February to come in and have booth sides of my port flushed.  I won't go in again until March 21 for another infusion of Zomera, Camille told me that the port needs to be flushed at least once every 30 days.

I have a large water-like blister on my right elbow that I showed to Jennifer who then went and got Mary Steinbach, one of the PAs, to come look at it.  I told them that it doesn't hurt and I m not sure how long I have had it, but it was present when we went to see Dr. Kuo early last month.  He identified it as a bursa and wrapped it so tightly that the entire lower arm and hand swelled up so much that they seemed to be infected.  Mary and Jennifer advised me to see a doctor about possibly draining it.  I have zn appointment with our dermatologist in March and may wait until I see him.

Valeo Home Health Care terminated January 12

I now go to the Wellness Center in the Huntsman Hospital twice a week for rather intensive therapy, but have to pay for it with the exception of the first week, which was covered by Medicare.  One meeting each week is at the Orthopedic Center's therapy pool where the workout is particularly intense.  The instructor is Darren and he tells me that it is his intent to have me walking without my 2-wheel walker or the cane.  I believe that the therapy provided by the 2 therapists from Valeo Home Health Care did me a world of good.  The physical therapist came every other day with changing exercises at least once a week and the Occupational therapist specified that we have grab bars installed in both of our large showers and said that once this was done we could move our bed back upstairs.  We had been sleeping on the bed from Judy's old room since just after Thanksgiving and we were quite anxious to go back to our bedroom where we had a much better bed and closets for our clothes.  She came on January 11 for her last visit and wanted to know why we had not yet moved back upstairs.  We took that as an invitation to move and did so that afternoon.

The visit with Dr. Atanackovic on December 22 was misunderstood by me, which I finally learned by calling his patient coordinator who copied and sent me his notes from the meeting.  He was putting my Myeloma treatment on hold until the reason for my frequent falling was found and corrected.  The peripheral neuropathy in my feet affecting my balance as it does may be a cause of the falls and phasing out the steroid medication along with stopping the Velcade infusions may stop my penchant for falling.  So, I won't be getting any medication for at least 3 months.  I will go to the BMT clinic on January 25 for an infusion of a substitute drug for the Aredia that I have been getting, but will not be making a 24-hour urine collection until further notice.

Significant (?) changes in cancer recovery program sice last post on December 21.

I had assumed that the Velcade infusions would resume after phase out of Methyl prednisolone was completed, but at the meeting with Dr.Atanackovic on the 22nd we were told that the stoppage is permanent and that I will no longer go the BMT clinic on 4 Mondays out of every 6 Mondays. I will only go  every 3 months with a 24-hour urine collection and will be subjected to blood draws. This makes me wonder if the Velcade is no longer needed why was I given it to begin with.  I was told that it is a Designer Drug designed to kill rapidly growing cells. 

A nurse had put a line in my port and drew 3 vials of blood and asked if she should withdraw the line; I told her no because some times when I have seen the oncologist he has asked to have more blood drawn and he will have his nurse withdraw the line.  Mary Steinbach, the PA I usually see, and a nurse in training came in the exam room to spend some time reviewing meds and condition before the doctor came in and he spent very little time telling me that the markers have been consistently low and only needed to be monitored at 3 month intervals.  He then told us we could leave without saying that we should 1wait for a nurse to see us; so we left with the line still in my port and I had completely forgotten about it  And didn't remember it until that evening when I decided to remove the adhesive patch covering the withdrawal spot and found the line still in place.

I went back to the BMT clinic the next morning where a nurse removed the line, but told me that the wound on my right hand was infected and should be seen by a doctor.  She called and found that I could be seen in the Wellness Center where Dr. Doyle examined my hand and told me that it is not infected; the redness is swelling in the hand and arm that is constricted by a wrap on my right elbow that had been placed by Dr. Kuo when we visited him on the afternoon of the 21st.  My hand had been dripping a clear fluid on the floor while we waited and as soon as the wrap was removed the drip stopped and Dr. Doyle told me no more wraps on the elbow or the hand.  She had her nurse, Bob, gather some gauze pads and tape to protect our bedding from the medicated salve I am to continue using on the wound.

Dr. Doyle had set up other appointments for me and the one with Dr. Wilson resulted in a prescription for home health care which has involved visit from an Occupational therapist and a Physical therapist both of whom have just about matched the allowed number of visits the Medicare will approve.  I am to see Dr. Wilson for a follow-up visit Monday.