been a while

[Zazzy]

Hi y'all,
I know it's been a while since I've posted... been busy around here lately.

Finally got the letter from the docs at Fred Hutchison Cancer Center in Seattle. They are recommending both a stem cell harvest and that we start looking for a donor now. (for those who don't know me.. lol... I have chronic myelogenous leukemia)

Reasoning for the donor search is that it may take 4-5 months to find a donor and if I happen to relapse I will probably only have 3-4 months at most. BUMMER

My PCP's nurse is going to arrange some fundraising. They require a $5,000 deposit to start a donor search and the stem cell harvest would run around $13K... with no help from insurance because it is still considered experimental. They told me that harvesting would gain me some time in the event of a relapse... but would not be the cure.... just a stop gap.

Going through physical therapy right now to deal with the scar tissue from my breast implant surgery. If we don't break up the scar tissue I could lose the implant and would be back at square one. The PT seems to be helping... but hurts like hell while she is doing it. I get a soft tissue massage after the therapy... but they told me that I need to take a vallium before coming to PT... I don't RELAX!!!

Went to see PCP yesterday because I am having some probs with GERD again. It seems that there is a viral gastritis that is going through town.. most probably from our water here... they have been doing construction downtown this summer and keep replacing water pipe. They said that it would take 3-4 days to pass through my system... have already been going through this for 5 days. She said that if I was not better today to call and that I would need to have a scope done. They are not entirely sure this is from gastritis... I am having esophageal spasms.. so is most likely some other thing going on. I am TIRED of other things going on!!! (Hoo boy.. someone get the cheese tray out to go with my whine!)

Work has been both my salvation and my bane. Salvation because it takes my mind off of things... bane because there are three coworkers who give me a lot of grief... everything from the amount of meds I take, my doc visits and lately my hearing problem. Eardrums are retracted from the Gleevec I take for my leuk. Am thinking of printing out a copy of the Americans With Disabilities Act to see if it would jog anyones sense of decency!!! I am getting rather tired of their rude comments and am thinking of quitting.

Stopped taking Gleevec for a time to see if it was the cause of my SOB... it is.... don't know what the heck we'll do about that one!

Hope everyone is fine and getting along well.

Take care,
Zazzy

 

[Nancy]

Hi Zazzy-

You're right, it has been a long time. You have a lot going on in your life and have had for a very long time. I'm sure you're exhausted with it all, but keep on moving ahead, just like you've always done.

You are a tough cookie and have weathered many storms very well indeed.

As to your co-workers?? What is their major maladjustments???Why would they even be mentioning how many medications you are taking? What business is it of theirs? They should have had the problems you have had, then they would be paying a lot less attention to things that don't concern them.

If you like the job otherwise, let them have it full barrel and let them know that you mean business. At least that would keep them away from you. With friends like that who needs enemies?

Keep popping in, please and let us know how you're doing.

Take care.

 

[Ross]

You better let us know what we can do to help you out Zaz. You know we will!

It all goes back to another thread where I said that unless someone else has your exact problem, they will never understand what you deal with or how you feel.

I think you should raise your right arm and smack them stupid myself! People Pffft. Don't you just love how intelligent some of them act?

 

[Les]

Hi Zazzy,
Nice to hear from you again! Your co-workers remind me of a moron in our office. Shortly after returning to work after my first AVR, I was in a meeting with him when he suddenly stopped talking ( a rarity in itself...) and asked, "What is that clicking noise?" Everyone laughed, and it was explained to him it was me, etc. He then said, 'Well do something about it...it's driving me nuts!" I replied, "It was a short trip...wasn't it..." and left the meeting. Best wishes for you Zazzy....you are in my thoughts!
______________
Les AVR '93 / '95

 

[RobThatsMe]

Hi Zazz,

So good to hear from you. Sounds like you have a full-time job tending to all the events going on in your life. Whew... talk about a full plate! Just stay the course like you always have, tackle'em one at a time.

Lots of changes going on with me too, health-wise things are good, but job-wise since the take over, things continue to be crazy and unstable. I am just riding it out, and hopefully will land with both feet. In the meantime.. life goes one, not putting anything on hold.

Drop me a e-mail sometime, and we can catchup more. I just wanted to take a moment to let you know I am still around. If there is anything that I / we can do to help, please let us know.

All my best,
Rob

 

[nadi]

I am so sorry

I am so sorry

I am so sorry that you have to put up people like that at work!
I agree with Les and Ross, let them have it, they are not worthy of your friendship!
I Hope they find a donor quickly for you.
I will keep you in my thoughts and prayers.
Take care,

 

[Bill Hall]

Zazzy - All things considered, you sound great. Do you still work for a Newspaper? I wondered why they would pick on you, you are such a nice person. Maybe they just enjoy your response to their teasing.

 

[hensylee]

Dear Zazz - just doesn't seem to quit, does it. I am so sorry that you are going through such things and admire your spunk and how you have continue to carry on with your pleasant remarks all the time. I think of you often and you are always in my prayers. If I can help, please email me. Ann

 

[Zazzy]

Thanks you guys!!! It helps just to know that someone cares! I was having a very bad morning that turned into an even worse one. Leaned over to pick something up from my bed... got a horrible back spasm. Spent the next 3-1/2 hours at the clinic. My PCP was busy so got the weird doc (who btw is the same doc who told me that there was nothing wrong with my heart a week before they told me I had to have surgery), who asked me if I knew if I had heart problems!!!! Then... instead of focusing on my back (where the pain was) he treated the esophageal spasms that I had seen my PCP for the day before! Nice thing though was that after that I had an appt. for physical therapy and those gals in there are the absolute best!!!

So.. by the end of the day I ended up with four more prescriptions

I think I just need to take a moron vacation!!!!

Thanks again

Zazz

 

[hensylee]

Zazz - I wanna go, too...........

 

[Zazzy]

Sure Ann.. get your bags packed.. I think we can convince Jess to accompany us on our journey

Sugeon's nurse called Friday... I have an appt. to meet with him Tuesday... scope is set for Wed. Guess they figure that if two prilosec a day and using nitro doesn't get rid of it that there is something to investigate. Either that or the surgeon is planning to have another addition to his family LOL

Take care,
Zazz

 

[Sagebrush]

Zazzy, Keep up the great sprit, I don't know how you do it. I felt so sorry for my self when I had my surgery. You will get through it !!!! All my prayers are with you !!!

FAYE in Southern Idaho

 

[Jean]

Zazzy, Glad I dropped in this morning to see your posts and say hi! Sending thoughts and prayers your way daily...remember my little Zazzy Girl goat? She reminds me of you at least twice each day...by the way from being essentially dead when I found her when she was born...she is a Zesty Zazzy and full of it...you are a good name totem for her...May she be one for you! She has had two sets of babies...a single and twins this year.

 

[sylviayasgur]

hi zazzy-girl!
we have missed you!!! i was so glad to come back and find your post. i can't even imagine how you must feel, as i felt exhausted after reading your post! you have so much going on.....and, yet, you always seem to stay positive.

i'm sorry you have to go through all these snags. it seems that when it rains, it really pours, doesn't it?
we are all here for you and would love to help if/ when you need it. just say the word.

please let us know how things go with the scope. hopefully they will find something they can easily fix.
you never cease to amaze me... you have a wonderful attitude. you are amazing, my role model!
i think of you often.

please let us know how things go.
be well, sylvia

 

[Zazzy]

well had the scope yesterday... should know results of the biopsy Monday or Tuesday. Surgeon called me today and said that they found no cancer.. did biopsy to double check for h.pylori bacteria. Then off to MRI... it was agonizing, even though I was still somewhat under sedation from the scope. Hard to lay flat when your back is bad. MRI was done because trip to the ER the night before revealed some degenerative things going on in my spine. Crumbling disks or some such thing. It is well... a pain in the back. I walk like Quasimoto these days. Still waiting to hear about that. Seems my entire life is waiting.

Monday I am off to Spokane to see the ENT to have my hearing checked. Darned eardrum keeps retracting and here I thought I just had selective hearing LOL

Hope everyone is okay and doing well.

Love,
Zazz

 

[Ross]

I'm still amazed at you. You've been through so much and still keep going. I know, what else can a person do? Well it's great news in one respect and maybe not so great on another, but at least the cancer isn't making an appearance. Hang in there. Were all plugin for ya!

 

[Zazzy]

Thanks Ross.. well at least stomach cancer isn't making an appearance. Already had my bout with breast cancer and the stupid blood cancer. Fighting it but getting mighty tired these days.

Take care
Zazz

 

[bvdr]

I'm sorry Zazz that you are going through such battles. You and your family are in my prayers.

Betty(bvdr)

 

[hensylee]

Been on that same MRI table and yes, it hurts. Sounds like you and I (and maybe Ross) can Quasimoto with the best of them!

Please let us know what the test results reveal. You know that we are always wanting to know. We can't help the situation but we surely can say our prayers. I have a prayer list 'THIS' long and you are right at the top and have been for years.

Love Ann

 

[Ross]

Zazzy I've been through alot myself. Nothing compared to what you've battled, but I've battled none the less. Sometimes I feel like I just can't go another around with anything, then I think of you. Your a source of inspiration to me even if you don't feel like that about yourself. I can relate to being tired. Sometimes it seems never ending and a constant torment. I still admire the heck out of you though!