Here we go again...

So, it all started last week when I started getting little headaches.On May 14/15 I had ridden a 60 mile bike ride, the Clean Air Challenge,ironically enough a fund raiser for lung cancer,from Houston to Talkeetna with Dana and some girls from work.
This past Monday my way out to about 20 miles past Willow to visit my friend Roger at Parker Lake, I started to feel worse and worse. I knew then I should have turned around, but continued on and flew out to the lake with Roger. A few hours and narcotics later, I knew something was really wrong and had him call me a Life flight helicopter to Providence hospital. Apparently, I had tumor pushing on my brain, making me incoherent and non-responsive. With some steriods, the swelling has gone down, but I still have the large tumor plus 2 small ones. At this point, I have 18 out of 20 radiation treatments left and then we will see where things are at. The long and short of it is that the cancer is back, this time in my brain. It is fairly aggressive and I am making plans. I plan on enjoying my summer, spending time with family and friends, here in Alaska and traveling as well. We will see where I am after that. Please feel free to write me here or through facebook, that is the best way, as the phone can get overwhelming. I am happy to have anyone come and visit, I plan on coming to Georgia at some point and want to see everyone.

Happy New Year Everyone

Looks like I'm starting 2011 off with a clean bill of health. I had a PET/CT done the day
before Thanksgiving and it was all clear which made for the
best Thanksgiving ever.
The plan going forward is to have a PET/CT done
every three months for the next two years then taper off from there.
The only med I take is for a sluggish thyroid which probably
got zapped with the radiation.....
While 2010 wasn't what I expected, I'd say the desired outcome was
achieved and am looking forward to 2011.
Thanks everyone for your good wishes and prayers..

Everyone have a healthy new year.

Nancy

Still looking good

All scans have been completed and compared and it all looks good.
I have a thyroid the glows with isotope uptake and the doctor is having a few
radiologist look at it but what ever they decide it will be manageable.
Had a brain scan the other week it was normal too, some people
would find that amazing. So it's back to work I go
and have started a few days a week. Actually I did miss it a wee bit.
Greatest news is that Mickey got his new kidney and it works well
thanks to his donor Mike and the support from his family.
I will get rescanned in a few months and will update then.
Nothing much more I can say except thank you for all your
love and support in helping me get over this bump in the road.

News Flash !!!!!!!

Hot off Fax machine....The results of the PET and CT scans...
The bottom line reads "there is no evidence of active neoplastic disease at this time".
I just reread the report and realize that the previous studies were not available for comparison
when the DR. was reading the current scan. The previous scans will be sent over to the Dr. and
he will do a comparison when he gets them and amend his report if needed.
The thyroid has an uncertain presentation and will be followed for possible adjustment in
thyroid medication.
So ....I still keep my fingers crossed....I think I see the light at the end of the tunnel

Getting some blood today...maybe.....

It was amazing how fast my counts dropped yesterday or how I felt them drop. Friday my HCT was 31.5 and PLTs were 219 before getting the last dose of chemo and Tuesday I had dropped to HCT23.6 and PLTs 76. Monday I had an impromptu Margarita Party...went well and felt good throughout a little tired but that's the norm lately. Yesterday Tuesday AM got up sun was shinning so I worked out in the back yard and took a short walk top see what was happening on the other side of the back fence. They are removing the cottonwoods in order to put up a new fence. I have spent many a night wondering how I could poison them and make them go away. BY 11AM I knew something was changing. I gulped down a second 5 Hour Energy...something I never do and still felt like someone had turned on the tap and all my energy was running out of my body.
I was getting short of breath just going up stairs to the bathroom. I have found that when feeling like this it's best to take a Xanax ...it will keep you from crying or make you stop if started.
I had to call my son Scott to drive me to my appt. because I couldn't drive...I had cancelled his
offer earlier that morning because I felt so good.
So we go to the appt and counts have indeed dropped so I get scheduled for a transfusion for this morning Wednesday 9AM at the Prov Infusion Center at 9AM. Great .....Wonderful....
OOOOP's what about the insurance coverage..... Aetna's hours are 8-5 and it's 6pm now.
No help on their website because they don't have any "infusion" places listed in their list of providers. So I got up at 5:45 this morning to start calling Aetna to find out what to do.
They record me and I record them .....After an hour and 15 minutes on the phone ...5 phone calls to different representatives it all boiled down to I have to provide Aetna with Prov Infusion Center Tax ID before they can do anything even though they know they don't have a provider in the state and if I don't they will penalize my by charging out of network prices.
So...I'm waiting for Prov Administration to arrive to see if one of those kind people will give me the tax ID to Prov Infusion Center so I can get my transfusion. To be continued...........

UPDATE....
After spending over an hour on the phone ( started at 7am) with Aetna and being told by 3 Aetna representatives that there were no infusion clinics in town ...actually there was..the one I was going to. This info was found by the clinic 10 minutes after I arrived. Why Aetna wouldn't tell me this I don't know. Good thing I took notes while talking to Aetna and have all their names. I will be writing a letter to the insurance commissioner.

On going chemo June 25th 2010

Wow it is time for an update.
I did start chemo again June 4th, had more June 11th, 25th and July 2nd if my counts are high enough.
Today the June 25th, Labs reveal the my counts have gone down despite all the good things I've eaten. Hemoglobin down to 27.7 from 33.7 and WBC 2.2 from 4.0.
The nurse practitioner said it would happen with this drug no matter what I did.. Gemzar also whacks the clotting factors too.
So anytime I feel bad next week I'll get my labs checked and if I've dropped too low like I did the first time around we'll cancel the last dose of Gemzar ( suppose to get it next Friday) and get some packed RBC's instead. I sure liked the bounce back I got with that transfusion.
Gemzar goes to the areas I had radiated and tends to irritate them. Swallowing is somewhat painful again but I am able to keep my weight at the same level.
My skin all the way around my chest and back feels like I have a VERY painful sunburn.
Wearing a bra hurts so I don't and get relief if I apply acupressure to the painful areas.
Leaning back on a wall actually works so does sitting on the couch.
The neurosurgeon I worked with said that the nerves that got zapped with radiation
were waking up and combined with the chemo drugs that this might come and go for awhile.
So I have another pill to take which does help with this creepy sensation.

Thanks for all the well wishes and prayers

Things are going well.........

Sorry, it's been awhile since I posted anything, a month to be exact.
I have made a major turn around and feel a lot better.

The burn on my chest is healed. That was nasty but there is a cool dressing that promotes
healing by keeping it moist and never letting it scab and no scar formation either.

The pain in my chest is gone when I'm swallowing. It was like having
one of those headaches
you get from rapidly swallowing a real cold drink.
For about 3 weeks I had to spoon in a mixture of Maalox and 2% viscous lidocaine gel
to numb my esophagus before I swallowed anything but Ensure.
I'm about 90% back to eating anything I want. I do have to think about when to swallow
and the size of the portion.....too big and it does scrape the sides as it goes down.
I think I have a small stricture which probably go away with time.

My hair is slowly growing back but I will probably lose it again...........

At my last appointment where several opinions were gathered from around the country
on how to treat me...
University of Washington said done with treatment and scan again in three months....Yale
gurus had no opinion.
There are several chemo drugs that I can take one is GEMZAR. It works on the
squamous cells of which my cancer has some involvement.
Side affects are hair loss, flu like symptoms, and anemia and drop in immune
system. Something to look forward to.

So the tentative plan is to do a couple more rounds of chemo with different drugs
and try to kill off any cancer cells that may be hiding out.

I did much better with the chemo than radiation so I'm willing to give it a shot.

I have returned going to the gym, going for walks around the bog, our weather has been beautiful and my garden is in so I might as well do it.

So, I'll let you know when we start something.

Thanks for all the prayer and well wishes.

Nancy

Update on the update...
Hopefully I will be starting chemo again Monday, June 7th
another dose Monday 14th, have three weeks off
then again July 5th and 12th. Yeah, that's cutting it close to Joels wedding on the 18th but I'm eating better and hopefully
can keep my blood count up and can hang out with
folks when they get here.