Bogie, Lucy & Maggie 11-2007

January Update

Hello to Everyone again and sorry for the long interim since the last report.
As usual some things have remained the same and some have changed dramatically. I have been on chemo again since June for a mild relapse & and am taking 2 drugs – Revlimid (Thalidomide with Decadron pulses on 21 day cycles). That initially demonstrated improvement but my December testing showed more disease progression although still nothing like initially So Dr. Van Rhee has doubled the Revlimid & also I now take 9 days of Decadron pulses (20 mg/day)/month instead of four. I just started the new regimen on January 1st. Lets’ keep our fingers crossed. Plus there are other treatment options available short of further stem cell transplants which I hope would be far off in the future if needed.
I still feel well the vast majority of the time and only have scattered down days each month where I am tired and fatigued and those are all normal. I just stay home and do little or nothing on those days. I have been working partial clinical shifts most at the nearby hospital at Mansfield just helping out when I can and that has been a lot of fun. However now that we are into flu season again and the new drug regimen will likely cause immunosuppresion, I will likely reduce clinical time and potential exposures. I’ll be having weekly labs to watch the blood counts. I sure do not want to end up in the hospital again with pneumonia like I did last February.
So that is the myeloma news but the bigger news in the recent past in that I finally got my faulty prosthetic hip revised on November 29th in Little Rock. We decided to have it done there since all my records are there plus we know the system well which makes thing go so much smoother. The original hip was replaced April 18, 1995 – the day before the Oklahoma City bombing so I got reasonable life from it but with time the polyethylene liner progressively wore out causing repeated subluxations/dislocations which increased in frequency as my activity levels increased. I could feel it was not stable and had to be very careful even with simple walking and the least slip would put it out which resulted in some major embarrassments and near serious accidents – like going out in a hot 7-Eleven parking lot while changing a tire last summer, popping out while bending over to wash the lower parts of my truck, getting stuck while hooking up wires behind my TV and the biggest one was putting on Baby Oil at the pool from a standing position, inadvertently leaning too far forward, popping out of place then crashing head first into deck chairs hurting an ankle, a wrist, two fingers and my nose. That one was the crowing blow to say the least.
The surgery could not happen fast enough so 11-29-2007 was a welcomed day. I decided to have the procedure done under epidural anesthesia to avoid the addition complication associated with general anesthesia and it was a wise choice that I highly recommend. Aside from having difficulty placing the catheter due my narrowed, arthritic disc spaces, it went well and definitely was the coolest most surreal thing I have ever experienced. First I lost all sensation in both legs but could still freely move them then that went. They give you Fentanyl and Versed then titrate Propofol so you are kind of in and out and you can hear people talking and I was talking & joking with them at times. It was a blast. Towards the end of the procedure an arm was falling asleep because I was on my side and they had my shoulder extended so I asked anesthesia if he could put me down and he said “no problem” and the next thing I was done and being placed on the bed. The procedure took about 3 ½ hours (I figured 60-75 minutes – yea right) but there were a couple complications. First a tip of on of the instruments broke off behind the new pelvic apparatus in an area when they had grafted some cadaver bone. Even though it was in an innocuous position they still tried to retrieve it for over an hour. The only way it will ever be noticed is on X-ray. Then the much bigger deal was they found a torn abductor muscle that required a big repair. It was torn off the bone and the only time that must have happened was when I first popped out the hip during the 2nd transplant in April 2006. That hurt so bad and the hip never had the same stability afterwards.
I could not have been more please with the superb medical and nursing care I received during the stay. Everyone treated me like gold. The courtesy, respect and professionalism were second to none. Naturally when the nurses learned that MJ and I were NP’s they would often inquire about career options, etc, which is common and something we both enjoy doing so that was fun too. I saw more staff in a half day there than I saw during my entire stay at Presby Dallas for the 1st surgery and never had to wait for any request.
Generally they have you up walking the day of surgery but they left in the epidural overnight for pain control which was great so I was up and about the next day. I am not permitted to bear weight on the right leg till the end of January (8 weeks post op) so the muscle can heal properly otherwise I could bear full weight on the new hip. I stayed in LR for 3 ½ weeks post op until my follow up visit with ortho then had my routine myeloma testing that same week. We got home on December 20th and it was a welcome site. Since I was and am limited by crutches the family took turns sitting with me during the stay. First MJ then my sister, Pat, for a week then Sarah and Chris for a few days each then MJ came back to take me home. I had physical therapy twice a week in our apartment and will resume at the end of January when I can bear full weight on the repaired muscle to build back up the hip.
Our holidays went well. My sister and her husband came down for the week of Thanksgiving and we have a great visit the Christmas and New Years were nice and peaceful and we got to spend time with the kids.
Mary Jo really enjoys her work at TCOM working palliative care and pain management and puts in long hours. The drive to Ft. Worth is so much shorter from the new house. My PECA bosses have been golden giving me projects to do since my clinical time is somewhat limited. Few people are fortunate enough to work such caring and compassionate friends. They are truly a blessing to me.
We also have some Christmas pictures of the dogs which I will attach to the blog.
bigdlehman.blogspot.com
We hope you holidays were great and that you all have a blessed and happy new year.
Love,
Don & Mary Jo

Family room

Master bath

Kitchen

Back yard

Family room & kitchen

New house

Back patio

3040 Rosina in April

Learning to beg from the big dogs

Lucie the fuzz ball

Baby Lucie

Bogie, Lucie & Maggie

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

Hi to Everyone,
I know it’s been a while but in this case no news is good news – sorta.
My testing in December and January went well with no signs of cancer and the recovery has been going well. The anemia is gone and really the only thing lagging has been my immunoglobulins which are the body’s first line of defense against infection. Apparently this is always the case and sometimes they never return to normal after transplant. For many patients this is not a big problem unless they are around lots of people and especially people with the flu and other infectious diseases – like in the emergency room.
I started back to work on a part time basis in early December. After a while it seemed like I never left. I really enjoy being back with my friends and it’s also nice to know I can still do the job and do things like use the computers, suture, think, etc. The down side was I kept getting sick with the flu every 3-4 weeks. Every time it was worse and lasted longer up until the 3rd time last week when it got worse to the point where I couldn’t take 5 steps without getting short of breath, was coughing my brains out and rattling so much that it was hard to sleep.
Instead of getting better, I seemed to be getting worse each day, and by Friday the shortness of breath was worrisome so we went to see my local hematologist who ended up admitting me to Lewisville M.C. TO make a long story short, I ended up with pneumonia (cultured out strep pneumo), gradually improved each day with antibiotics and was discharged Tuesday. During the course of the work up they also found a clot in the upper left calf but were unable to determine if it was new or a remnant of the one from last March. Although we all feel it is probably old, the safe route is to go on Coumadin for 3 months then re sonogram the leg.
The only bad news from the deal is that I cannot work in the emergency dept until flu season is behind us. When I’m recovered my bosses are going to find some non clinical work for me to do – are these good people or what!! In the mean time my hematologist is going to order monthly IV gamma globulin to boost my immunity, but it is so expensive that insurance approval takes 4-6 weeks.
So life continues on albeit a little differently that anticipated. Now I’ll have time to go to the gym, work on the yard and my truck and, for a change, hone the golf game.
I’m still sending monthly blood work to UAMS and will return in April for all the big testing again.
I hope all is well with all of you and I’ll try to do better about keeping in touch.
Don

Orton Hall

 

Ohio Stadium

 

Mirror Lake

 

Old President's House

 

University Hall

 

Ohio State Oval

 

Alum Creek Pond

 

Sunset at the Lake

 

Sunset Alum Creek Reservoir Columbus

 

Southeast Ohio

 

The Arkansas Travelers

The Arkansas Travelers
Hi Family & Friends,
A few people have mentioned that there hasn’t been a blog entry in months and I realized I have been remiss in keeping folks updated. In this case no news has been good news.
Things have progressed well over and I am gradually getting back to normal (hold the smart assed comments). With the exception of mild anemia, all blood counts are good. The doc has me on iron with vitamin B12 & folic acid to help restore those red blood cells. The energy and stamina have really improved over the past couple months – I was beginning to wonder if I’d ever get back to baseline. I began going back to the gym about a month ago to do cardio work like stationery bicycle, treadmill & elliptical trainer with some light free weights & resistance machines. My trainer, Jesse, has been so upbeat and positive as always and is such a wonderful motivator even for big lard asses like me. The goofy thing was I had been working out for about 3 weeks when I went for the November appt in LR and found I gained 8 more lbs – of course that was right after Halloween. With the 1st transplant I lost 30 lbs and gained 20 back then with the 2nd I lost 20 lbs and gained 40 back. Nonetheless to say I have some “heavy” work to do but I’m not going to hammer myself too hard since all I’ve been doing for the past 6 months is lying around and eating. I’ve always been a talented eater.
Next week is the last vaccination, #12, and then I return in early January for 3 days of final testing. From then on we will send monthly blood work and then most likely visit LR every 3 months for testing. It’s hard to believe I’m at the end of the study – it all began on December 9th last year. Mary Jo and I had a long talk with Dr. Van Rhee last month about what to expect from here on out and the outlook was different and better than we expected. The possibility of relapse will always be there but there is no way to predict the type (there are many ways one can relapse) or when it could happen. The bottom line is that I can now proceed with my life like some other brave, determined and inspirational friends have done after fighting cancer. One cannot help but notice that there always many people who are much worse off yet live on with incredible strength and courage. I now have time that did not appear to be there a year ago. Who could not consider that fortunate? A year ago at this time I did not know what to expect with the so called “terminal” disease diagnosis, but now I expect to resume life where I left off which includes being a “terminal” wise ass. It has not been that bad compared to many others.
I spent the last 2 ½ weeks up in Ohio visiting family. I was so nice because there was plenty of time to do what I wanted. I spent hours driving all about the state and around Mansfield where I was born and raised. The first week was based out of Westerville just north of Columbus with MJ’s mom. I could not have picked a better time because it was the week before the Michigan game. Columbus lives and dies with Ohio State so there was massive hype. I did not get to go to the game (tickets were scarce and going for about $1,500 each) but was on campus the morning of the game and never saw such a mass of scarlet and gray clad humanity in my life. They had hot dog stands and clothing stands up on the sidewalks, bars were open at 0800, and there were signs every where – it was a carnival atmosphere. The following Saturday morning (Thanksgiving break) I was on campus for 2 ½ hours taking pictures and didn’t see 10 people – what a contrast. I know all you UT/OU fans can appreciate the hate and disdain for cross state rivals, and the same is so true for Ohio State (the real OSU) and Michigan. I don’t hate Michigan fans; they can’t help it that they are Cro-Magnon, knuckle draggers! You know what the average Michigan student gets on their SAT’s? Drool!! And you know what you call a good looking woman on the Michigan campus? A visitor!!
We then spent Thanksgiving week at my sister’s in Cincinnati and had a great time even though they’re Michigan fans after living close to Ann Arbor most of their lives. A few years ago they wised up and moved to Cinci. I actually think they felt out of place there with having IQ’s > 70, and no genetic deficiencies and all. We’ve obviously had a lot of fun with the rivalry through the years. I also got to visit most of the family left in the state. It was really neat to see everyone again.
On the home front, MJ started a new job with the pain management team at Harris Methodist FTW a few weeks ago. She is now is sharing a position with another APN then in the New Year will transition to full-time. This type of stuff is right up her alley with end of life issues, etc. She is still teaching her on-line course on palliative care for the UT system 2-3 times/year. She could conceivably work out her career with the position at Harris so that is good for her plus there are the benefits of working in the big system. Our kids are all doing fine with school, work, etc.
The great news is I am returning to work with PECA next week at about 20 hours/week initially until we see what I can do but I expect to eventually go full-time. I am really excited and am so appreciative of my dear friends Bob and Kasey for keeping a spot for me even if I couldn’t do clinical work – something they promised since I was first diagnosed. Think about it. How many employers would do that? It is difficult to explain how comforting it is to know you will have a job waiting when you and they don’t know if you will ever be able to return or in what capacity. These are special people.
So anyway that’s the current scoop and I promise to enter blog entries more regularly. We hope you all have wonderful holidays and Happy New Year. I will post this on the blog with some pictures from Ohio at bigdlehman.blogspot.com.
Love you all,
Don

Yellowstone bison - no bull!!