Updating the Journey

 Here's the latest from the cancer front.

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."

Entering Our 7th Year!

We now enter our 7th year fighting this cancer. So far, I think Sabine and her care team has done a great job and certainly we have learned to realize every day is a blessing and love can grow even stronger as we age together!

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.]

Wrestling!

In January, we begin the 7th year of our cancer fight. I know some folks don't like to call it a fight, but for me that's exactly what it is... more like a wrestling match for an old grappler like me. Into a contest, my strategy was to control my opponent, get some points built up and work for the pin which would end the match.

That's how I feel today... I am trying to control this opponent (those nasty light chains in Sabine's blood) and I think we are doing a pretty good job (yes, "we" is Drs. Sheehan and Chan and their medical teams).

If you read the first blogs I posted it all sounded pretty grim -- like maybe there wouldn't be time to control the match.

So this Christmastide I am greatly thankful for these years I never thought I would have with Sabine. That's what blessing is -- something never expected yet something that needs to simply be accepted with a God-directed, thank you!

We have gone through a number of cancer treatment cycles this year with Velcade (bortezomid) being the primary drug in combination with the steroid drug, dexamethasone, and, occasionally, Revilmid (lenalidomide).

Eventually, the efficacy of Velcade will diminish (we may be starting that possibility now), but there is a new type of drug in the same class coming down the pike that may be of help. However, using this new drug will result in going back to intervenous infusions twice a week, two days in a row.

The last few cycles of Velcade have been much easier on Sabine because the drug could be used subcutaneously (just under the skin).

In the meantime, we have both lived our life together in its fullest -- daily exercise, trips, family reunions, church activities, and time with friends.

Yep, that's what it's all about.

Ding, Ding. Round two coming up!

Forward!

This chemo cycle report on the "cancer numbers" looked good. Last cycle when Sabine severely fractured her wrist and had to have an external splint (her erector set), the numbers went up and not down. This caused a lot of worry. The chemo cycle she just completed thankfully told another story -- the numbers went down. This would indicate she is still responsive to the chemo -- bortezimib (Velcade). The strategy now is to do two more cycles and then perhaps a rest.


So far, this chemotherapy has been effective as Sabine's blood cancer is responsive to the drug. Regardless, the future is still bright. Other approved drugs are available. And, as I have said in the past, we have a number of "arrows in the quiver!"

Life is good. Sabine's wrist continues to heal and she continues an active life (dialysis aside!).

That's it. Today's report from the trenches.

Continuing...

This guy was too cute
not to take his picture.

With the broken (shattered) wrist Sabine got two weeks off without chemo. The thinking here is that the steroid in the chemo treatment might impact healing of the wrist. But... the numbers went UP indicating that the current chemo cocktail may not be working.

So, it's back on the old cocktail for a three-week chemo cycle. If it fails to repress the cancer then we will go to another "arrow" in the quiver (and the good news here is that there are a number of arrows left).

As to the wrist, the orthopedic doc thought the bones were healing but would like Sabine to stay in the external apparatus (erector set) for a couple more weeks.

Sabine continues here daily activity and was even seen bicycling on the Military Ridge trail near Blue Mounds Park on Saturday.

And the leaves are coloring and the temperature dropping... sounds like winter is not far behind!

We live the life.

Recovering...

We got released from UW Hospital early yesterday afternoon and went home and did dialysis. All went relatively well (although I had to use a "sharp" needle on one of the buttonholes).

Sabine is still experiencing some arm pain (using Tylenol as the pain reliever but does have a more powerful painkiller standing by -- oxycodone). She is tough.

This morning's dialysis went well (no need for the sharp needles) but then I made a mistake (we have to tend to the four pin wounds in her arm and hand) and she got an extra dose of saline solution in the dialysis process before we corrected the error. But all ended well.

Now we are tracing down the surgeon (or anyone?) who can give us some info that should have been in her discharge papers. Like how much wound drainage is normal? They give us the hospitalist's phone number but when calling the hospital tells us that number is only available during an inpatient stay. (So why give us the number on the discharge papers?).

I also could not find the name of the orthopedic surgeon in the discharge papers. It seems foolish to say this" "Call your doctor or go to the ER if you have drainage or redness around pin sites..." That seems like an expensive way to answer an patient's question.

So we are winding up dialysis now and then going back down to UW Hospital to resume the chemo therapy cycle.

And, if I don't get a call back, we will ask the chemotherapy nurses what they think or go to the ER!

Nevertheless, dear friends, life is still good! And your prayers and God's presence, abundantly felt!

Breaking News

It's been a while since we have had a medical crisis -- and that's why there haven't been any posts on this site for quite some time. Up until yesterday evening both chemo and our life has been relatively easygoing.

After a wonderful mini-vacation including cycling, disc golf, stock car races, and a stay at a good old traditional Wisconsin lake resort, we returned only to have Sabine fall and shatter her wrist when a chair she was standing on collapsed while she was removing a window hanging.

The 9-1-1 call. The ambulance to our farm at about 7 p.m., seven hours in the E.R. and then an admission at 2 a.m. I went home to sleep for a couple of hours and then back to the hospital and the prospect of surgery.

Now up to this point, for most of us it's just a broken bone, and a cast for 6 weeks. But for a kidney dialysis and blood cancer patient, it's only just begun.

Here's what we may have to struggle with:

1. The broken wrist (both heads of the radius and ulna were snapped and one of the bones penetrated the skin compounded the fracture and presented an infection problem). Unfortunately, the injury was on Sabine's fistula arm (the access points for her hemodialysis) and that "buttonhole" site needs to be preserved (initially, it took three separate surgeries to establish the fistula).

2. If we cannot use her fistula, a tunnel catheter will have to be inserted into Sabine's chest (before the fistula was developed we dialyzed through one for over a year. It, too, could present an infection potential.

3. Sabine's cancer-caused compromised immune system makes the possibility of infection a dangerous situation.

4. Sabine's blood cancer (multiple myeloma) makes her bones less strong and both repair and healing can be compromised.

5. She is currently in a cycle of chemotherapy which we hope will not have to be ceased during her orthopedic recovery.

6. The surgeon may not be able to cast the arm and will have to put pins and a connecting rod in her arm as an "exo" support (see picture). This also could lead to the possibility of an infection.

Sometimes things get complicated. But Sabine is a valiant and joyful fighter. And we do teamwork well together for these past 30+ years!

If you are a believer, pray.
If not, project healing thoughts for her.

Stay tuned. And for all of you who have already sent emails and FB messages, we both are deeply moved and thankful.

p.s. as I was writing this, her surgeon came down and informed me that the surgery went well -- they did have to put in the "exo" structure -- pins and rod system (but not traditional plaster cast.) Sabine will be in the hospital for another night and will most likely be discharged tomorrow (Tuesday).

NEWS FLASH: Now for the dialysis problem: can her arm be used for dialysis given the surgery? Yes! The orthopedic surgeon says he has no problem with it and that will preclude having to look for a new dialysis site (tunnel catheter!). The doc says Sabine can be discharged tomorrow. Tomorrow will have to be a dialysis day. Next hurdle is Sabine getting her chemo shot tomorrow and keeping that cycle going. Whew!