Numbers!

We have struggled with the numbers this past year... trying to keep them down -- those nasty, cancer-spawned, light chains that have caused all the problems.

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.

A Needed Update

Hard to believe that the last post I wrote was in February -- just after we entered our seventh year of the struggle with cancer.

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.

Stay tuned.

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.