Tuesday, April 30, 2013

A day of fun!?

16 vials of blood today for various blood tests - they don't call it a mega lab for nothin' !

Talked to our lodging person and should have voucher for our room by Thursday of next week. Did that while we enjoyed a little snack at the Starbucks in Moffitt.

Psychologist entry interview, cognitive testing and met the Dr. Jones-Booth.
Gil did remarkably well on the cognitive tests - she even called him intelligent (not that I had any doubts). Did find out we had kind of gone through 3 social workers - 2 subs and we have yet really to meet the one assigned to Gil's case, but we've talked to her on the phone. Guess I had raised a few flags with our last meeting with a social worker - I did have a lot of questions, but nothing impractical. Hmmm.... Well I am glad Gil found out he is as intelligent as he thought he was. As for being normal? Well, normal is a relative term. HA!

Love, hugs a kisses as always, dear. :* 😘

Oh well - now to Dr Ball for a last round of blood work!
Although I wasn't able to get a pic of Gil & his mega lab, I did snap this shot of him at Dr. Ball's office, Fl. Cancer Specialists.


Saturday, April 27, 2013

The Human Conditon

I keep thinking about the whole Boston marathon bombings and stuff a wonder: should I hate them for the damage done or thank them for uniting us all again?

I have never been a part of any major tragedies or had any great, huge life changing experiences (that I am aware of). My brother & sister were affected by the Northridge earthquake in California 1994 and in 2004, closer to home, hurricane Charley damaged my parents residence moving them closer to me which impacting Gil and I a bit. We had a minor fire in the house, but nothing was really damaged. I moved a lot as a kid, learned to fly when I was young, but failed at learning to land (once was enough). When I was young my dad had cancer and I learned quickly people don't like to deal with life & death situations, especially when you are around 13 years old; Break-ups are hard enough, who wants to deal with a parent on death door. (my dad is still alive, by the way - 91 years old now, WWII and 3x cancer survivor!)

Even though I found a deeper faith in Christ in college, I learned then that life goes on and as long as you keep moving, no one will really notice when anything is wrong; even if you stop for a moment, everyone has their own problems, they don't really notice or want to notice yours. It's cynical, but kind of how I've learned to live; learned to cope. We're pretty much on our own; God is probably the only one listening.

This is Gil's second go around with Hodgkin's. 7 years ago, the chemo made him pretty sick. His allergy to one of the drugs was rare and probably contributed to his overall sickness. The only real support system we had in place was family and church, but there were a lot of emotions to overcome and a lot of distance. A lot of people asked about his health and we had a pretty good tech team at church, but there were few offers of assistance. Life went on, we got through and here we are again, 7 years later...a different strain of Hodgkins and slightly different circumstances.

The chemo Gil started out with actually went pretty smoothly, considering it was supposed to be a more aggressive mix - 3 days on with one being a 24 hour drip, 18 days off, for 2 cycles.The first week of the cycle was the worst, but the rest a piece of cake! My run team has been super supportive, the coaches and others asking if there is anything they can do to help. Church has been more supportive with the pastor actually getting upset with Gil being at work at times. Even my parent's church, whose pastor is dealing with his wife's cancer, has been praying and supporting us!

When the bone marrow transplant was suggested, family and friends actually asked about donating. When the transplant got pushed back, everyone was very understanding - my sub at school, the girls that were going to housesit, the county (risk management?) and school secretary for having to change my family medical leave. Gil was put on a new 'designer' chemo that takes the wind out him, but we kept going.

Now, as we prepare for the second time to move to Tampa for the transplant, I've been blown away by the continued support. Mary Wilson, who was my sub, was supposed to start her vacation in May. She and her husband put off their vacation so she could finish out the rest of the school year for me. People at church are supporting us in various ways; offering housing, visitations, deliveries...

This has blown my mind. 7 years ago I was angry and upset at how little help and support we had; now we have more support than we know what to do with, but as we face the unknown with the bone marrow transplant, we may need it. Groceries, laundry, a moment to go for a short run (we'll be staying near Lettuce Lake park!), our Tampa family may be called on quite a bit. When we come home I'm not sure what kind of help we'll need, if any. We've heard best and worst case scenarios - be we won't know how we'll handle things till we get there.

Hope you all aren't totally 'prayed' out yet. I know this feels like it's been going on forever, but I'm keeping my faith and you all have helped me renew my faith in man.

I'm not gonna lie. As we face this bone marrow thing, we're a little scared. I try not to think about the 'what-if's', Gil can't help but think about them. We are dealing with it all one day at a time.

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” (2 Corinthians 4:15-17 NLT)

Saturday, April 20, 2013

Getting ready...again

Well, it's been a pretty busy week, but it's about to get busier.
Last week was 10th grade FCAT for me at work. 3 sessions a day, 70 minutes each...0ver 500 kids tested...and that's just the 10th grade class!
Gil has been busy helping is parents get ready for Mom to go home from re-hab, which happened Thursday April 18th.
My mom turned 84th Thursday, so Gil & I and the dogs all went to Pt. Charlotte for a birthday dinner, overnight at Banana Bay, and breakfast this morning.
In the midst of all this we got Gil's new prep-schedule.
Gil has chemo Tuesday, April 23rd, then he/we meet with the psychologist on the 30th, CAT scan & Dr. on May 1, neupogin shots start on the 10th and apheresis on the 14th. We have received a phone call from the social worker and they are arranging for our housing to start May 10th.

OK, all that aside.
I know from looking at the stats for this blog that I get a lot of traffic from overseas. I thought maybe I was making more of an impact than I was aware of, that this was helping someone overseas. I get all of the comments by e-mail as well seeing them here - but fortunately for you dear reader, you do not see all of the comments. The 'robots' for blogger do a good job of keeping the erroneous odd comments from showing up. It is really strange when you get a comment in very bad english and it has really nothing to do with the post being commented about. "aw, thanks [name]. check out my website..." or "to better do this, you should post pictures" on a post that didn't require pictures. All of these type of comments have a website attached. So annoying - why do they really bother?

There was one that did make me think - they were asking for advice on writing a blog. If that one is/was real - all I can say is just do it. I'm no expert at blog writing. I'd like to think my background of creative writing helps, but - mostly this is just for my family & friends to stay updated on Gil's condition and any other great adventures that come our way. If it really does help someone who is dealing with cancer or whatever in life - well, that's just icing!

love to all.
hmmm....maybe someday I'll start a story thru here. that could be interesting.

Saturday, April 06, 2013

Rough week

The first 24 hours after Gil's treatment (Tuesday) wasn't too bad, but later Wednesday evening, after his booster shot, it started to hit - nausea, chills, shortness of breath, backache.
No vomiting and his hair is still growing, but his appetite and level of activity were definitely diminished.

He is sleeping harder bur is feeling much better today. We managed to put some dirt in the backyard to fill in where Snoopy had run ruts into the ground from playing.

My first week back to school was filled with a lot of surprised staff & students, and a lot of testing. I think they are glad I'm back for testing, because I was left with a lot of testing responsibilities (like I had a choice? It is in my room, after all). 8 weeks of testing - yay! Oh the places I could go with that, but that may be a different post.

Gil has a Dr. appointment Tuesday for blood work; I'll be curious about his white cell count. There is also an appointment at Moffitt for the Apheresis on May 14, which is sooner than I figured, but that will be based on his next CAT scan, which has not been scheduled yet. BUT one thing at a time....have to get thru his next chemo treatment first (April 23).



Tuesday, April 02, 2013

Acedris

So after a crazy holy week of a rental light board, power outages at church resulting in a true service of darkness on good Friday, and 3 services on Easter Sunday, we finally got a little down time Sunday evening. But, Monday it was back to school and "surprise" to many a student and teacher, and much explaining.

Tuesday, today, we started back at testing. Things weren't quite as prepared as I would have hoped, again. Today was also Gil's first turn with the new chemo, Acedris (aka brentuximab vedotin). So far so good; he's a little tired because they gave him benadryl with it as a preventative - it's a fairly new drug, so they were being proactive? Outside of being tired he has said his feet and ankles got a little tingly while playing with Snoopy outside and his head itches a little (well, the hair is trying to come back). I was going to take Snoopy for a short run, but it's getting a lot warmer quickly and he was willing to throw the wubba (dog toy) instead, so...

Moffitt seems to have started a schedule. We/he has an appointment for apheresis on May 14th. We'll see how it all fills out soon enough.