Friday, October 21, 2016

Still Struggling to Normalize

Yesterday, Sabine went in for her second chemo infusion this week (carfilzomib) and with platelets and some other blood chemistry tests being low, she had to receive 2 units of whole blood. After the chemo infusion, we left the clinic at around 7:30 p.m. Whew!

But a stop at our favorite local Chinese restaurant (Imperial Gardens) perked her up. Juggling 5 hemodialysis sessions a week with two runs to the clinic at UW Hospital for IV infusions sort of fills the week up along with the normal fall chores of getting ready for winter on the farm, and her mother's failing memory -- it's challenge.

Although she is pretty tired (8.0 hemoglobin), she continues to have a positive attitude with daily exercise and coveted naps in the afternoon.

We still have our boat in the water (we try to be the last one out in early November)
and we are looking forward to enjoying some overnights on the Mississippi.

In January, we begin our 9th year managing this thing called "cancer."


A Poem on a Walk

for 8 years now
we've pursued
while blood-washing
chemicals become
your/our life
mutations and permutations have
been partners
in our life
but they do not
as we continue
our morning walks 
(after coffee,
of course)
up the hill 
i see a
some kind of 
an illusion?
private and primitive 
it hangs around
my arm passes
go somewhere
get out of
find another
another what?
another victim?
yes, i say


Monday, October 10, 2016

October and Recovering Platelets

I think we've got the new chemo and the "new normal" established enroute toward some stabilization. Sabine''s playlets have stopped plunging enabling the new chemo to kick in and get back on schedule. She has been pretty tired. We still get out for a daily walk.  There is some face-swelling that we cannot account for. But no neck pain and dialysis is going well.

The end of the boat season is quickly approaching yet October is one of our favorite times on the river.

Much of which to be thankful as we approach year nine.

Monday, September 19, 2016


At UW Hospital today for a "root-router" of her veins to eliminate arm and face swelling. We have to do this no less than every three months. Due to Sabine's low platelet count she had to have a platelet transfusion prior to her surgery today. Dr Chan checked in and told me the procedure went well and "see you all in three months." All this still is worrisome because the swelling makes it difficult to put in the fistula needles. We'll see tomorrow how it goes and how the swelling has gone down.

Sunday, September 11, 2016

How's Your Stress?

I sometimes imagine I have a stress gauge. Some people can tell when their blood pressure rises, for me, it's stress. After the last two weeks, I see the needle on my stress gauge slowing edging into the "red zone." I can't imagine what these past two weeks have been for Sabine!

It all started with her having a "pulled muscle" in her neck. Or so she thought. After two ER admissions and an MRI, a small mass was observed on her neck (cervical vertebrae) on her dura -- the sheath around her spinal cord. No, not good.

She was admitted to the hospital for a five days stint trying to figure out if it was an infection or plasmacytoma. The latter would be caused by her multiple myeloma.

Many doctor visits in the room. We did daily dialysis in hospital with me doing the procedure (that dropped Sabine's stress needle a lot -- at first, it was why she did not want to go to the hospital despite her growing neck pain!). She worried about how the dialysis would be done and would the hospital let me supervise. They did. That was good.

Then a PET scan calmed things down a bit because it showed only ONE cytoma on her neck and not an outburst (hot spots) in other parts of her body.

Then 5 successive radiation treatments on the C3/C4 area of her neck vertebrae.

Then a change in her chemotherapy protocol due to increasing cancer numbers and a dropping level of platelets.

Then a bone marrow biopsy (2 sticks) in order to get some bone marrow out of her pelvic region (yes, ouch, again). (A later report showed about 40% myeloma cells [we forget what the number was when we started] and no displace --  that is no other hematological problems in her blood. Very good news.)

The first day of the new treatment regimen also required us to go out to the new UW Hospital on Madison's eastside to get echo-grams of Sabine's heart and shoulder (the IV chemo has a history of causing some heart problems. I think the doc wanted to have a baseline for her as we begin this new treatment).

We have now switched from solely an oral treatment to pills plus hospital infusion. This means a monthly cycle of Thursday/Friday infusions with oral pills between. The new drugs are IV carfilzomib with oral dexamethasone and pomalidomide. (While the other drugs are well-covered with manageable co-pays, Medicare covers 95% of the pomalidomide. That's 95% of $14,000 per week. We pay the remaining 5%.)

On top of all this, I was signed up to teach fall semester at Platteville! And next week is our annual policing conference on campus. Yes, red zone, red zone!

Writing about this after a fairly quiet weekend in which we went out to dinner. Thursday night Sabine wanted to attend the APT play, "Arcadia," in Spring Green. We made it through the first act. And on Saturday we attended a faculty picnic and football game in Platteville things don't seem quite as bad.

Along with some exercise every day, Sabine wishes to be active. That's how she manages.

Also, as people of faith, our church family has been a great source of prayer and support. They have been with us now from the beginning! For that we are deeply thankful.

I guess it's a combination of deep-breathing, thinking "carpe diem," and re-framing a new protocol. A fellow faculty member took my Thursday class so I could see how the new chemo infusion went. It thankfully went well!

That's my report from the trench. It's a little deeper, but looking better.

We decided, yes, we can do this!

Stay tuned... (prayer welcomed!)

Very similar to the trench I was in for the last two weeks! Where was Sabine? I think she was in the barbed wire!

Our trusty "Vein Team" at UW Hospital using an echogram to find Sabine's illusive veins so we can start the infusion. Yes, they got it!
Taking a break and climbing out of the trench for a few hours at the UW-Platteville vs. St Francis football game in Platteville.
Hey, just like a Badger game but no crowds and everyone seemed sober! Big marching band, flag team, cheerleaders and "Platteville Pete" (watch out Bucky!)

Monday, September 5, 2016

Big Week Ahead

Dr Sheehan called and told us Sabine's "numbers" were up and that he wanted to see a bone marrow biopsy. So, on Wednesday we go for that and a meeting with his Nurse Practitioner (Dr Sheehan will be on vacation for a week).

Additionally, we will have to stop the elotuzumib
 and go for different chemo that will involve two IV infusion days each week (on Thursdays and Fridays).

So, a big week ahead. I start teaching and we are at the hospital for three days this week.

Prayers and good vibrations needed.

Wednesday, August 31, 2016

Infusion Day

Today is our 3rd hospital infusion. A long day that began at 6:30 a.m. with a drive to UW Hospital, lab work before the chemo is infused and the a four or more hour infusion process. As always, a special team is needed to find a vein to begin the process.

Nevertheless, we try and make "lemonade." I do some internet work for my blog and this coming semester at UW-Platteville. And then there is one of our more popular lunch restaurants a short walk away [I'm the mobile one] called "The Sushi Box."

The reason for Sabine's tiredness and lack of energy this past weeks was revealed in her hemoglobin count 8.2! The good news is that her platelets have increased to sixty-four [they were in the forties last week].

Hoping to make it home by 5 p.m.

One day at a time.

Wednesday, August 24, 2016

Infusion Day (Round Two)

So here we are again at University Hospital Cancer Center. Sabine still has a low platelet count but we met earlier with Dr Sheehan and he decided to proceed for infusion #2 and discontinue the oral chemo until next week. So far, so good -- get that new immunotherapy drug attacking those wayward blood cells.