Shingles -part deux

Greets All,

After a debate with herself, Gail went to work today & by the day's end was just feeling  horrible. She came home & went to bed for a bit. Her shingles themselves have not spread more nor have they procced any open wounds, but she has a lot of muscle pain due to the shingle virus. I thought we caught it early enough, but probably not. Hopefully, her antibiotic will kick in fast!

We got her medical alert bracelet in the mail today. FAST delivery & it is exactly what we ordered. www.stickyj.com is a good company. Cayleigh has the spare bracelet without the engraved info on right now. Too cute.

We chatted yesterday about what & when we'll Cayleigh about our Dana Farber trip. We figure after our last cheer competition, which still gives her a solid week or so before-hand to understand that Mommy's blood is bothering her and we're going on a lil' trip to figure out what to do.

After canceling plans we made with Penny, Charee-Charèè & Samara, I ended up running out with Cayleigh while Gail slept to pick up Chinese for dins at our no MSG favorite place. Gail ate, took her meds & is in bed for the night. I think I'm almost as tired, though I wish I could deal with her pain for her. Hate not being able to do more for her.

I'm looking to make her a t-shirt. Our gym's owner & good friend, Mindi, told Gail that "she's a VIPER. She can handle it." So, I got permission to use the VIPER logo from the gym & am trying to find a company that'll make 1 shirt for under $25. Wish the new printers worked like the old ones. I used to make t-shirts all the time with ink-jet iron-on transparency paper. The new stuff doesn't work. :| Any1 know anybody that would make 1 with a logo & 1 line of text on a decent white t-shirt without charging me more than dinner for 3?

Anyhow -just remembered that tomorrow is my 42nd b-date. Am glad to be here, but just doesn't seem like a focus for me this year.

Thanks for all your prayers & support all. It's REALLY appreciated!

2-24-2011 Shingles?

HAPPY BIRTHDATE DAD!...

I hope all's going well with all of you! We booked flights to Logan Airport in Boston for our trip to Dana farber and are staying at The Hope Lodge. We're trying to figure out departure time for the trip back. Not sure what test & consultation conferences etds are yet?

Gail was put on a ZPAC to prevent Strep when Cayleigh came home with it early last week. She ended up having to go off the ZPAC & was put on a Medrol dose pack. She probably has some shingles as a result and we're headed to Dr. Simpson tomorrow, then if needed, to our dermatologist. (None have rings, breaks or are oozing).

Yesterday, Gail said she had some upper abdominal discomfort, especially when she took deep breaths. I've been checking to see if there's any puffy areas near the top of her ribs on her left side, comparing to her right side. She said she feels better today. Dr. Simpson said to watch her carefully & if I think she "looks bad" that we should go to the E/R for a blood workup. Luckily, no need ::knock wood::

I'm worried the shingles will cause more issues or the treatment for shingles will cause more issues.

We both took the day off to go to Gail's with Dr. Simpson to figure out what to do about the shingles (we're pretty sure that's what she has at this point).

I took a few days off from researching, except for the shingles issue.

We're also still discussing what to tell Cayleigh as time begins to wind down to our trip. neither of us likes keeping her in the dark, but at the same time, she doesn't need the extra worry at 6 years old. Most likely, we'll fill her in, in a generally way, right after her big cheer competition at the end of March by saying that Mommy's blood has something not quite right & that we're going to find out how to work with the problem.

Bonnie has been an AWESOME friend and info from her is ALWAYS awesome! I plan to get her a Wonder Woman t-shirt. Or possible get her dog, Max, a Wonder Dog wrap. He's been great on their MDAnderson trip, too. We look forward to meeting Max and seeing Bonnie & Joe again.

2pm: Dr. Simpson, already high in our book, rose a bit higher today. gail OES have shingles & he prescribed Valtrex. His 1st question was if our daughter has had the Chicken Pox immunization. 2nd was for me, but I truly don't count as much as Cayleigh anyhow. :> He also answered on 2 or 3 other questions we had & all is well. Gail's platelets were back over 500, but he said this is due to the shingles' effect on the body & they should get back down in a few days.

APPLE's NUMBERS is THE MOST AWESOME BLOODWORK TRACKER!

Gail is getting her birthdate massage & manicure/pedicure! Cayleigh just woke from a nap -she did a lot of work this morning on her weather project. Gail has some VERY minor side effects, such as some muscle/skin soreness to the touch & a couple of little itty-bitty red dots, but this is most likely due to the combination of ZPAC & HYDROXYUREA. She started a MEDROL pack yesterday & the symptoms are better. She also stopped the ZPAC -it wa preventative anyhow due to Cayleigh coming home with Strep mid-week.

I downloaded the 30-day trial of APPLE'S NUMBERS spreadsheet program and it has become the solution to the dreaded multi-category chart/graph issue that EXCEL creates with regard to creating different row graphs with different conditions per row!
I'd like to thank Victor & Stephanie at APPLE for giving me the info on the trial.

I had downloaded a little app called iBloodwork, but it wasn't useful for more than 3 categories. Most of the other bloodtracking/bloodwork programs are for blood sugar/Diabetes, so they weren't helpful.

It took me about :30 to set up the mins/maxes and set up the info./graphs for White Blood Count, Red Blood Count, Platelets, HemoGlobin and HematoCrit. SO easy to use.

Happy Birthdate Joe!

Platelet's Goin' Down! :>

Greets All!

Gail's platelets down to 467 from 702 two weeks ago!

Dr. Simpson answered almost all of my questions, too! He was funny =asked how we knew Dr. Steensma & if we were personal friends. I said, "We are now!" LOL & filled him in on how much we've been in contact. He said that Dr. Steensma called him, too & he was under the impression that we had already been friends. LOL

Retest on 3/1 -to see if counts come down to normal. Definitely another bone marrow test when we're in Boston.

Woot! Get 'em Gail!

Possible Minor Side Effects Begin 2-13-2011

2-13-2011: On Thursday, 2-3, Gail began Hydroxyurea (light chemo) to help
lower platelet counts to support spleen and blood.


Possible side effect began today, 2-13, with Gail saying her skin “hurts”.
There are no marks, sores or bleeding. She also says her muscles are sore
a bit. Both these symptoms could be unrelated and just part of turning 40
the day before. ;).


Tuesday, we go to our local hematologist for our 2-week since diagnosed
PMF (Primary MyeloFibrosis) follow-up. Wish us luck!






2-12-2011: Happy 40th Gail!!!! You still look 20 to me. Cayleigh went to
lunch with Aunt Ceri today while we scooted to...


We went to lunch with Bonnie & Joe. WHAT a cool pair of people! Both gave
us some great information and were QUITE supportive. It's funny that we
are quite parellel with our personalities and our marriages, etc. We are
keeping you in our thoughts and prayers as you trek to treatment!


Afterwards, we went to watch Owen earn his Yellow Belt at a mixed martial
arts dojo! later, we went to Japanese with Joy (1 of Gail's "sisters") and
Gary, her cool hubby. I'm just glad Gail had a great day!