On the Road Again (with our trusty dialysis machine!)

There is something liberating and peaceful about our vacation time.  I was really looking forward to our trip to Florida.  My expectations were certainly met with our visits to new family members (the Gowers) and reconnecting with daughters Catherine and Jennifer and their families in nearby St Petersburg.

Of course, Sabine loves vacations!  She always has.  And the chemotherapy seems to be going well (we will check the numbers again when we return).  I also can report that the on-the-road hemo dialysis has been going well and I have been able to make the vein connections without complications (thanks be to God!).

Just before we left Orlando and headed off to the beach on the east coast (Hutchinson Island) the dialysis machine failed.  Not completely, but started to give us some worrying signals the last hour of treatment.  We made it through and called our dialysis nurses in Madison and then the manufacturer of the machine -- NextStage on the east coast.  (Yes, they had just been snowed in with a tremendous blizzard).

We took the next day off (Friday) and drove to Hutchinson Beach where NextStage said they would deliver a NEW machine after 5 pm.  We arrived at the condo, unpacked, and soon had a call from the desk that our machine had arrived from the airport in Miami.  Magic!

So we have a new machine for this morning's treatment as we spend our last week on the beach.  The weather has been great (up to 80 degrees yesterday) and plenty of sunshine. Just what Sabine needs!

Here's a few pics!

Sabine and friends at the Cafe Tu Tu Tango in Orlando

On St Petersburg Beach

Bowling with kids and grandkids at the Ten Pin Lanes

Fresh grouper at the marina in Fort Pierce

The view from our condo on Hutchinson Island near Jensen Beach

Florida

[Coughing, wheezing, sniffling, hacking] "Well, we just might as well be sick in warm Florida than in freezing Wisconsin!" So we headed south, drove 800 miles before we saw grass and even though we scraped our windows in Lake City, we were in Florida and it had to get warmer.

I was worried that Sabine's cough could be related to her cancer -- so, when I finally caught a cold, I was relieved...  Such is the nature of a caregiver/battle buddy.

Here's some pics from our stop at my granddaughter Nikki and four GREAT grandkids in southern Illinois and at our timeshare in Orlando near Disney World.

(Oh, yes, our colds have seem to disappear with the frost...]

Good To Go!

Sabine likes to get up for her cancer doc!  And with sub-zero weather all around us, why not think SOUTH -- sort of a mid-winter luau at the cancer clinic!  (NO, we don't dress up like this in the main lobby!  We change after we get into Dr Sheehan's office and before he comes in!).

So here we are.  Dr Sheehan gets to pick whether we get to go south for a couple of weeks vacation:
GOOD TO GO or NO GO!


Guess which on he picked?

Worries

We meet with Dr Sheehan next week just before our vacation; our “run to the south.” I am worried. We got the blood test “numbers” back today and they had, again, increased. And this is despite the chemotherapy intervention. One side of me (the rational one) wants to look at the increase as being statistically insignificant – an increase, yes, but not a big one. Then there is the cough…

We are monitoring a strange cough that Sabine has. We have discussed it with at the clinic and we are watching and seeing whether or not another chest x-ray is warranted. No temp, no tell-tale mucus signs, but a persistent cough. I am watchful for pneumonia that stalks many multiple myeloma patients.

The other side of me says, “whoa!” We’re not going anywhere until the cough gets under control. And I don’t like an increase in any of the cancer markers – even those deemed “statistically insignificant.” I hunker down. I internally shout, “Circle the wagons,” and diligently watch for any kind of trouble.

This is really the “ups and downs” of cancer. You got it. You get it under control. You watch. You wait. And then you’re back in the fight again.

Stay tuned until Wednesday when we have our scheduled appointment with Dr Sheehan.

P.S. For those of you who are number-watchers the free lambda light chains have gone from 19 in Nov., 2009 six months after the stem-cell transplant and this was still holding into last May. Then last August the numbers jumped to 42, September was 64, and 133 in November when we started the Revlimid/Dexamethasone intervention. Within 4 weeks it has reduced the numbers to 71. Now, in her second 28-day cycle of chemo the numbers have now increased to 106 (which was the lowest Sabine got in her initial Velcade chemotherapy.

Winter Colds

So far, the chemotherapy has been going well.  But I have to remember that Sabine's immune system is depressed while this is going one -- and that means to BEWARE of viruses and other bugs.  She has been struggling with her second cold this season and this gets me on edge.  I suspect it is her immune system because I have caught none of these bugs (and in the past, if one of us had a cold the other would soon follow). It is now primarily a night-time cough, but thankfully no temperature spiking.  So we are on watch.  Still planning and running south in a couple of weeks after we consult with Dr Sheehan.  Otherwise, live is good and we are grateful!

Update 2011

It's been a while since I have posted.  As you know, "no news is good news!" (At least in my blogging life).  Dialysis has gone well for us and we are encouraged by Sabine's reponse to the chemotherapy.  It is deep and cold winter here in Wisconsin and we now are looking south for our annual "run to the sun" for a few weeks to thaw out and help us get through the rest of our winter.

We take blood for the cancer test on Monday and then see Dr Sheehan again on the 19th -- just before we head south (that is if all goes well!).

Christmas is now past -- the Feast of the Epiphany was on Thursday and that means the days are getting longer and the light shines out more powerfully (linking Christian theology with the natural world!).

Sabine and I wish you all a blessed New Year.  We are anticipating an great new year in 2011 -- we hope you will join us as a people of hope!

Progess into the New Year

We have been waiting for Sabine's lab results to come in.  They did not make it in time for her meeting with Dr Sheehan this week.  Nevertheless, Dr Sheehan wanted to continue with Sabine's current treatment protocol of Revlimid and Dexamethasone.

But today, Christmas Eve, the data came in and it show that her "cancer numbers" have not only been held in check, but in fact have been repressed.  This is good news and we enter the Christmas season with more comfort knowing that the current chemotherapy she is on seems to be working and that the side effects of the drugs have been minimal.

Christmas blessings to all of you.

Live each day as if it were our last...