Never a dull moment around here. After Sabine's fall and ER run on Saturday morning (and the ER doc's reading of her hip X-ray as "no fracture) we thought we were pretty lucky. However, Sabine's leg pain persisted (even with a walker and plenty of rest) so that I took her to her primary care clinic yesterday afternoon following our appointment with Dr Sheehan our oncologist (who also suggested we take another look at the hip).
Suspicions confirmed. Sabine has a cracked femur near the ball joint of her right hip. Prognosis? Bed rest and no unnecessary movement.
So I will be moving all the dialysis equipment from Buddy's house down to ours. We will set up our dialysis clinic in the living room!
We have an orthopedic visit to UW clinics the first week in January.
Time to think healing and, I'm afraid, no dancing on New Year's Eve!
Time to reset for a "new normal" and simply be grateful the damage was not greater and also to note that we are beginning our 8th year of fighting cancer.
This day of Christmas Eve we count our blessings (instead of sheep!).
Wednesday, December 24, 2014
Monday, December 22, 2014
|On the trail n Governor Dodge State Park north of Dodgeville, Wisc.|
We will be doing a follow-up this week when we visit Dr Sheehan tomorrow. In the meantime, it's pretty slow moving around here (and my continuing worry that this seems pretty major for a bruised muscle. Thankfully, a radiologist will be reading the x-rays. (Needless to say, I was quite relieved at this diagnosis... I was sure she had a fracture.)
|ER at Upland Hills Hospital in Dodgeville|
I am still able to transport Sabine up the hill for dialysis but worry about what I will do when the snow flies and I can't get a vehicle into our yard (which avoids the stairs).
But one step at a time.
Praise the Lord and pass the ammunition!
Friday, December 19, 2014
|They are English Suffolk-Punch draft horses. They drag the logs down the hill and into the donkey pasture.|
My last post was in September after we had another one of those fabulous Couper reunions.
Since that time we have moved to an oral chemotherapy which is much easier on Sabine than the twice weekly IV chemical infusions at the hospital.
|Girls' disc golf team: left to right: Heather, Teak, Heather R., Malea, Gracie, and Sabine.|
The latest excitement on New Journey Farm is fulfilling our contract with the DNR according to our Managed Forest Plan. Thirty years have now passed and we are required to submit a logging plan. We decided to have the loggers use horses rather than mechanized equipment in our woods. What a lovely sight.
|Sabine and sister Barbara sitting on a log (recently harvested!)|
|During this summer's family reunion, we rented the wiffleball field at Rookies near Mazomanie.|
But all now is recovered after a few months of physical therapy. It certainly did not slow her down with her daily exercise regimen.
It was seven years ago this month that the cancer came on. Sabine's prognosis was not good... first about two years... then we had five... and now we are beginning our 8th year and looking forward to some Florida sunshine at the end of January.
Sabine recently was asked to talk to a group of medical students about her experiences as a cancer and kidney patient. I heard she did a great job. After all, she is truly the Energizer Rabbit.
We bought a used boat late this summer and are looking forward to a lot of river cruising with our trusty dialysis machine. We keep "Kokomo" (that's her given name) at a marina in Dubuque that is only 60 minutes from our farm.
|During a late fall run on the Mississippi south of Dubuque with friends Jeff and Bonnie.|
At this time, I just want to give thanks for everyone's prayers and support through the years. Loving helps all of us and it is the loving prayers (and good thoughts from our less-than-believing friends) that we are sure have made the difference.
I thank God for Sabine in my life. Remember dear friends what Sabine says: "Life doesn't have to be perfect to be wonderful!"
Happy and Merry Christmas to you all!
Monday, September 1, 2014
On the medical front, we have had a change in the chemo routine -- seems like a bit of an experiment last month when our oncologist suggested we try a "softer" approach after a number of months with twice weekly IV infusions of carfilzomib (plus dexamethasone). So, for the past month Sabine has been on 5 mg of daily Revlimid (lenalidomide) plus 40 mg of dexamethasone weekly.
We had an ER scare last week the day after Sabine had another hospital procedure to clear the veins connected to her fistula. The day surgery procedure went well but the following day she came down with temperature and cough. Fearing a blood infection, we were told to get to the ER and after tests got home around midnight, six hours later!
This weekend we got the numbers back from the first month of this regimen and they look mighty good (25.3!). This new, softer protocol has keep her lambda light chain numbers and ration down to a "normal" range.
We will see what our oncologist has to say on Wednesday. In the meantime, life remains good as we are now over half way through our seventh year!
To this, we give God thanks!
Thursday, August 7, 2014
At the clinic yesterday, Sabine's cancer numbers were down (praise be!) -- the lowest in 4 years).
Dr Sheehan is going to drop the current chemo regimen (IV infusion of carfilzomib plus oral Revlimid twice weekly) and, instead, put Sabine on a low dose of daily Revlimid (5 mg) and dexamethasone.
In a month we'll see what happens....
This give us a lot more flexibility in our dialysis and, generally, in our life.
We now are half-way through our seventh year of the fight. Press on!
And keep those healing thoughts and prayers coming.
Tuesday, June 24, 2014
The chemo cycle has been relatively "easy" (and I put this in quotes) for Sabine. She continues to be active and exercise daily (though there has been an impact with being tired). And who shouldn't be with either dialysis or chemotherapy taking up six days of the week?
Sabine did a remarkable effort during the past nine months preparing three teenagers from our parish for confirmation. It never fails to amaze me how good she is with others (particularly children).
These past two months (chemo rounds) she has been undergoing a pretty heavy dose of carfilzomib plus Revilmid plus dexamethasone and it has caused some debilitating daylong nausea on the second or third day after her last (Friday) chemo infusion.
Of course, when something physical happens, I get anxious and start to worry.
So this coming Thursday and Friday she will take the last two infusions of our current cycle and then see Dr Sheehan the following Wednesday. We will monitor (and try to medicate) the nausea and vomiting, check the numbers when the blood work comes back, and then meet with Dr Sheehan and see what's next.
I must never forget that this life or cancer-fighting is one day at a time plus being ever and always thankful for every day I have with her.
Life, and God, remain good.
Thursday, June 12, 2014
I guess I am a fair weather writer (looking back on my poetry that is exactly the truth). I tend to write very few poems when things are going well. After all, without grief, loss and tragedy, what would a poet write?
This has been a long way to say that life has achieved a new normal for us. I would call this the "management" stage of the disease. Sure, we dialyze five days a week and have a three-week chemotherapy regimen with, then, a week off (but still dialysis!).
I was still able to encourage Sabine to help me re-edit a workbook we collaboratively wrote over 20 years ago ("The New Quality Leadership Workbook For Police." We published it earlier this month. And Sabine was still able to take three of our youth from St Peter's along a year-long process which ended in their confirmation two weeks ago. And then there is (again) our annual family summer reunion this coming July. (Whew!)
Nevertheless (and if you know me) I venture forth warily, watching for signs of trouble. Sometimes I think of my self as an old western wagon master. The guy who leads a group of settlers west across the prairie and all the time looking for danger, prairie fires, and stampeding buffalo.
Yes, I do enjoy this role (is it not too unlike that of a police officer?). So I am the guardian, the protector. Sabine and I enjoy the journey -- each other's company -- and the time we have to become even better friends and lovers. God is good and so is this life. We are blessed.
Thursday, February 20, 2014
After a number of cycles of sub-Q Velcade (bortezomib), it was seemingly loosing its effect and not repressing the cancer. So, her physician moved to another drug in the same class called Kyprolis (carfilzomib). Unfortunately, this drug must be given IV and two successive days in the Clinic. After two cycles with the new drug (starting with a low dose) it does not seem to be effectively suppressing the cancer.
Therefore, our next cycle (beginning today) will be with a higher dose for a three week cycle. We will see how it goes.
In the meantime, the new drug has caused some side effects such as increased tiredness and some shortness of breath (commonly reported side effects). But Sabine has trudged on with daily exercise and continues her active life (thanks be to God!).
We are now into our seventh year of diagnosis and thankful for each and every day we have been given.
Last weekend was an active time with granddaughter Gracie and her mother, Heather, from San Diego. We went snowshoeing, flew kites at the Delvan "Kites on Ice" winter celebration, and attended a moving play by Madison's Children's Theater called, "The Giver."
Thursday, January 16, 2014
Now we are switching to a new chemotherapy protocol -- from Velcade (bortizimib) and dexamethasone to a new drug in the same class called Kyprolis (carfilzomib) which is supposed to cause less neuropathy and is used when Velcade looses its effectiveness (during the last few months it is apparent that Velcade is not hold the "numbers" down).
The downside of Kyprolis is that it has side effects involving cardiac and pulmonary problems. (I know, I shouldn't have read the side effects of the drug! After all, Sabine is in relatively good health.) We will begin the regimen today with Sabine getting an EKG (electocardiogram) yesterday after our meeting with our hematologist, Dr Sheehan.
The other piece of this change is that we go back to IV (intravenous) infusion. The IV protocol is not easy for Sabine because there always seems to be difficulty in finding a vein. So we go from a weekly subcutaneous (under the skin) injection to two successive days in the clinic at UW Hospital. This will also require us to dialyze five straight days with two days off after two days of infusion.
In December, we switched doing home hemodialysis from our little cottage in Mazomanie to New Journey Farm. We remodeled Sabine's mother's basement and put a medical room for dialysis purposes. The shift has been good because I can keep on eye on Sabine's mother who will soon reach her 90th year.
Last week we attended my sister's funeral in Mankato, Minn. She recently was diagnosed with lung cancer but unexpectedly died of an aneurism after some minor surgery. She was my only sibling and it was difficult to say goodbye. These are times in which my faith keeps me on my feet. I can't imagine how I would have gone through all the things that have happened in recent years without it!
But Sabine and I can do it! Just like the picture from the industrial days of World War II. I always think of Sabine when I see the "we can do it" picture.
[The following pictures are of our new dialysis room. The first picture is discussing the project with friend, Kurt, who did the excellent work. The next picture is of Sabine in her dialysis chair with the trusty machine-kidney at work. The third picture is my desk and the 6 foot picture window that looks out onto the pasture and the farm house and bridge.]