September Blog Update

Hi family & friends,
People have been reminding me that it has been a long, long time since the last blog entry (they were right) and I noticed I haven’t posted anything since February. Wow, time flies and a lot has happened in the last 6 months. Not making a blog entry for so long can be guilt provoking – like being in school and procrastinating about an assignment. And then the longer you go the more there is to say, the more overwhelming it seems and the more you continue to procrastinate. I guess I’ll never escape that guilt of being a Catholic boy.
So where do I start – I guess I’ll divide things up into sections so it’s easier to keep things straight in my simple mind.
We moved to Grand Prairie in the middle of May. For those of you not familiar with the Dallas/Ft. Worth area, we are now more in the middle of the metroplex and in the south rather than the north. The move was prompted by two big factors which were getting closer to Ft. Worth so MJ now has a 30”commute rather than > 1 hour excluding traffic, and getting into a new and smaller house that did not need the maintenance required by our 12 year old house in Highland Village because I could do virtually nothing to help when I was sick and recovering fro the transplants. It was tough convincing me to leave the home in HV because I loved that neighborhood, the house and our beautiful lot on the greenbelt. And then there are all those hassles of changing your address. Things went as well as could be expected and we are pretty much settled in. We are right on the far SW end of Grand Prairie right on the Mansfield border in the Peninsula of Joe Pool Lake close to Cedar Hill. The area is full of new development as was our previous house so there are all those new construction experiences i.e. flat tires, pounding hammers and sawing, blaring Mexican music etc. but houses are going up fast and I expect the subdivision will be completed in 1-1 1/2 years. The place is also much closer to where I work, not that I work that much, but its 30” from Methodist Central, 20” from Charlton and 5’ from Methodist Mansfield. The traffic is much better than coming in from the north, and with more freeway options in the event of traffic jams. I’ll send pics.
Mary Jo started in a new position at The University of North Texas Medical School working in hospice and pain management. That is what she has always wanted to do so she enjoys it a lot although is usually busy (it’s like people are dying to get onto their service). She still works with many of the same folks at Harris Methodist as when she was working there. The medical school seems to treat her with more respect than in any of her previous non educational jobs – like acknowledging that she has a PhD on name badges and lab coats, etc.
At least around here the hospital hierarchy’s don’t want to acknowledge that employees are more highly educated and usually MUCH SMARTER than then. Permit me to jump on my soapbox for a moment those about hospital administrators, especially those horribly inbred Trinity MHA grads who infest the north Texas health care systems. Those people who tell all of us how to do our jobs even though they have no clinical experience or sense about what we all do, and those in the insurance industry who decide/approve the tests and treatments we order at the expense of good patient care. And this is at the same time the country is pouring billions of dollars into the care to the care of illegal aliens while many of our elderly, mentally ill, disabled and disabled veterans have to struggle in the unmanageable bureaucracies of the government. And if you want to see where the money goes look at the salaries, bonuses and perks those people receive. In my opinion, they are parasites on the ass of our health care system. This type of leadership is what prompted the development of unions back in my parent’s generation. I’ll be the first to admit that many grew out of control like the teamsters, the UAW and especially the professional baseball players unions, but I sincerely believe the time has come for resurgence because now the employees have no protection and little recourse against the short-sighted, non-caring, and wealthy micro-thinkers that run our systems. Sorry if offended anyone with the political statement, but it has been a hot button for me since I’ve been a nurse and it is only getting worse. It’s takes a lot of commitment and hard work but it’s time to organize “nut up” and challenge those cretins.
Mary Jo had a health scare earlier this year when she was feeling bad with a lot of fatigue and her PCP noticed her WBC (white blood cell counts) were dropping and she was sent to a hematologist for an evaluation and had all the labs and a bone marrow biopsy. The concern was that she might have MDS (myelodysplastic syndrome) another bone marrow malignancy that also carries a poor prognosis. Unfortunately things did not go well with the hematologist in Mansfield so she shared her results both with Dr. van Rhee and with my local hematologist, Dr, Dean and they both felt it was not a MDS presentation and likely a benign condition called cyclical neutropenia. It seems to have stabilized and she is now just routinely following with Dr. Dean, who by the way is another great doctor and a wonderful guy. Her big accomplishment this year has been a 40 lb. weight since January loss via a monitored program at Harris Methodist Ft. Worth. She looks and feels better and now has a new wardrobe.
The kids are doing fine. Sarah is still doing account, etc. for the same apartment complex in Carrollton and Chris finished paramedic school and is doing his ambulance ride outs then will take the national registry exam. He’s been seeing a girl pretty steadily for the past few months. We don’t see them as often now because they still live up by our old neighborhood, but Chris works in Johnson County which is real close to us.
The past 6 months have been going well for me. I was going to LR every 3 months for my routine check ups. I noticed in April that the plasma cell % (the bad cells for me and the higher the worse) in my bone marrow was a little elevated but not a big concern to the doc, then in June the numbers doubled. In spite of the climb, Dr. van Rhee did not feel it was precipitous like originally but he did feel I needed to begin a conservative form of treatment and bumped up the frequency of my visits to every 2 months. Later that month I began the regimen of Revlimid (the new form of Thalidomide) which is taken for a cycle of 21 days then a 10 day rest and also the 1st 4 days of the cycle I take 20 mg of Decadron. Each cycle is followed by a 10 day rest period to allow for bone marrow recovery because these drugs can also suppress WBC’s and platelets. My blood is tested weekly and thus far my counts have done pretty well with platelets staying normal and minor but gradual drops in the WBC’s as each cycle progresses. I just began the 3rd cycle earlier this week and will be in the midst of it when I visit LR the week after next. As always I am anxious to see how the testing goes. Dr. van Rhee said that if the results are not satisfactory he will add a 3rd drug called Velcade which is one of the newer IV myeloma drugs that has yielded good results and he is confident that will do the trick, and it can also be administered locally by Dr. Dean. Although we patients all hope for permanent or long-term remissions, the fact is that MM is a chronic disease and chronic diseases require chronic treatment so I’m okay with it all as long as I continue to feel well. It is the first treatment I’ve received since my 2nd transplant in April 2006 and that’s pretty good. The doc feels that the need for further transplants is far away so that is good news. I really feel like I have a lot of good time left and the past few months have felt better than I have in 2 years. You can all be assured that I’ll be around keeping things straight with the world for a long time.
The Revlimid has caused some fatigue usually in the afternoons of active days but then I just take naps. Decadron give me hiccups and usually makes me jumpy and buzzed so I tend to gets lots done on those days, but also short-fused at times and I take Ativan if I can’t sleep. One morning I knocked over 3 cups of coffee then finally gave up. The pot was empty anyway and that last cup got tossed across the street into a vacant lot.
The larger recent problem has been with the prosthetic right hip that is now 12 years old which considering the technology then is pretty good. You may remember I subluxed (partially popped it out of joint) during the 2nd transplant. We saw the orthopedic oncologist there at that time who felt it happened not because of the myeloma but rather due to normal deterioration of the polyethylene socket and the effects of the chemo on loosening the supportive connective tissue that normally keeps the hip stable. He felt that the joint had 1-2 years left with reasonable care, but said he would replace it any time if it became problematic. It has done relatively well with only about 4 or 5 subluxations (always when I inadvertently got it into the wrong position) since then up until July. I was up in Ohio changing a flat tire in a 7-11 parking lot, squatted the wrong way and out it went and, as always, down I went in a pile. Then the routine is to get flat on my back try to relax and pop it back into place by moving the leg laterally. The trouble is 7-11 parking lots are hot and greasy in the summer so nonetheless to say I quickly lost the beneficial effects of the shower I had recently taken. Then last week at the local pool I was standing and putting suntan oil on my leg and popped it out again going headfirst into the deck chairs. Since I was standing it could have been real bad but fortunately the deck chairs broke the fall and I ended up bruising and scraping my nose, both knees, the left foot and sprained the left index finger. That one was scary and since then I’ve tried to be real careful because the joint seems to be a little loose. I think it’s time to get it fixed because it’s starting to interfere with my quality of life so I have an appointment to see the ortho oncologist when I go for the routine testing the week after next and I want it fixed ASAP because having an unstable joint is very disconcerting. When it first went out in 2006 it really hurt, but now it doesn’t hurt much when it goes out but it is a very unsettling experience. Plus other big factors relating to the myeloma and its treatment come into play now – like having it fixed when I am healthy and my blood counts are good. If it fully dislocated that would be ugly and require an ED trip via ambulance with a possible admission and if surgery was needed and my counts were low then it would have to be postponed until they recovered and require me to be relatively immobile in bed which would totally suck. Plus it could happen anywhere including out of town and many orthopedic surgeons (including the guy who originally replaced the hip) aren’t crazy about working on MM patients and especially ones they are not familiar with because MM commonly affects the bones. Fortunately there is no disease in the hip showing from my MRI in June (and I’ll have another one this month) and, in fact the hips and pelvis have always been free of disease. I feel the contributing factors to the hip decline are: natural deterioration of the joint with age, the fact that I am more active now than I have been in months and possibly weakening of the supportive tissue from the new medication regimen. So the idea is to get it fixed under controlled conditions and when I am doing well. The other thing is that replacement of the artificial socket (cup) is a quick and simple procedure and without all the cutting, drilling and hammering involved with the initial surgery. I expect a short hospitalization a rapid recovery and am anxious to hear what the ortho doc has to say
My wonderful bosses at PECA continue to treat me like gold. I basically make my own hours and work only about 30-40 hours/month and doing project work. I’ve steered clear of patient contact on doctor’s orders since I got pneumonia in February and then also until we found out how I would respond to the new treatment and since things are going well Dr. Dean and my bosses have let me resume clinical time provided my counts are stable and I fell okay. I only plan to do half shifts (6 hours or so) as a fill in for shortages, vacations, sick calls or favors once or twice a week as needed. I did my 1st shift back yesterday at Mansfield which is brand new, five minutes from our house and tends to be quieter and more benign than the two bigger hospitals. Getting back into patient contact is a real kick and really makes me feel like I’m making a difference plus my perspective has changed since I’ve been on the receiving side of treatment and especially with patients with legitimate conditions.
The rest of the time I’ve been futzing about the houses. Both ends of moving were a lot of work, but getting settled in the new place too time. MJ concentrated on the inside and I did the garage and attic. It is amazing how organized those places are now especially after a million trips to Home Depot or Lowe’s. It was really nice to have the time to set it up right. Our garage is 2 1//2 cars wide so there is more room to move around plus it has 9’ rather than 8’ doors. There is also an attic assess that was added to the garage that leads to a large storage area. Chris and I took a couple days and got it all planked so now we have a ton of organized attic space which we’ve never had before. So from the male perspective, my areas are just peachy keen!!
I’ve been gradually doing more chores and errands as the energy has increased and began a daily walking routine every day. Bogie and I go out every morning for 45-55” before the heat rises too high. If I can’t get out early enough then I’ll pool walk which is what really got me back on my feet last summer. And I’ve also improved the diet in an effort to rid myself of the excess tonnage I’ve been carrying and, I’m tired of feeling like a slob and of not having any of my nice clothes fit and want to lose 25 more pounds to get into better shape for surgery. It’s working slowly but I expect it will take 4-6 months. I also go to the pool almost every day so the tan is looking good and only enhances my natural good looks, studliness and sexiness.
I traveled to Ohio (the motherland) in the end of July and early August for a family reunion and to see my sister in Cinci and MJ’s mom in Columbus and had a great time. Our family has never been good with staying in touch so it was neat to see relatives I hadn’t seen in over 30 years. I did notice that all of them seemed to noticeably age except for me of course.
We also have a new addition to our household. She is Lucie, a 5 month old Bichon Frise puppy that we got the week we moved. She is just a delightful and lovable entertainer as are all Bichons. She is bright, energetic and very funny and absolutely drives Maggie and Bogie crazy at times but they too have grown accustomed to her, and are good siblings at teaching her the ropes of being a dog. She seems even feistier than Bogie was at her age. Bichons are bred to entertain and that they surely do, and it’s great for me because I’m home so much with them. I’d go crazy without my dogs. I’ll add some pics of the pooches.
I was able to golf some in the spring but have laid off in the summer heat - now I’m getting the itch again especially since the weather will be cooling down soon. I played with my brother-in-law up in Ohio and then later with my buddy Scott (Myron) and then with my friends Betsy and David (but that day it was so hot we only played 11 holes – when you bend over to pick up your ball and things momentarily go black it’s time to stop). The funny thing is that I probably hit the ball consistently better now than ever.
I think I’ve run out of things to say for now and vow to be more prompt with the next entry. I hope you like the pictures.
Love to all,
Don