Peace Love & Beer

It's funny. I've felt so normal this week that it's hard to believe I'm headed to Vandy tomorrow to talk to doctors and have a bunch of tests done. They've found me a donor. Yes, that's wonderful news but, up until now, I've thought of my "donor" as being something they make up in a lab. When they called me this week and told me, it finally dawned on me that this PERSON out there is giving me their bone marrow to save my life. wow. How does one... wow. I can't even begin to put into words... I just wish I could do something like that for someone.

So, yeah, typically me, instead of staying focused and writing questions down and getting paperwork together and doing the kinda things I should have done to get ready for this very important trip, I went on a sewing binge. I've sewn all week and done nothing but sew. Hmmmm. I think it's called avoiding. Maybe that's why I feel like I'm going on a small vacation. I've been wanting to go to Nashville since we moved here. My mama and oldest sister were born there. I've heard that there are all kinds of fun stuff to do there. After all, I won't be with the doctors and having tests done the ENTIRE time I'm there, right? Might as well have a little fun and enjoy the trip. And yet, all week, these questions come to mind, I push them aside, tell myself I'll write them down later, and go back to sewing. So, here I am, the night before I leave and nothing written down except these words on my blog.

It has been a really good week. More energy than I've been used to, an actual train of thought without it turning into a train wreck, some creativeness. Not too bad. I've enjoyed it. It's almost 1 a.m. and I'm sorta packed. Still need to shower. All my sewing is done. sorta.

Randomness.

Thanks so much for all the cards, calls, emails, thoughts, prayers & chants. I hold all very dear to my heart and consider myself very lucky to have such wonderful & caring people in my life. Life is good.

Something else that's funny. Once you start feeling "normal" and start to think "straight", you have so many thoughts that you can't think "straight". Don't expect this post to make "sense".

I miss Peggy. Seems like a month since she was here making jewelry with me but it's only been a week. I miss you Peggy! I'll come by FCC when I get back.

I'm so very thankful for my sisters. I can't imagine life without them. I love our diversity. They make me see things thru different eyes. I love their support and words of wisdom. I love everything about them and wouldn't change them for the world.

Chuck, thank you for being my friend and for the sweet emails. You've touched my life more than you know.

I bought a couple of wigs a few weeks ago. I actually found one very similar to my real hair which I find quite amuzing.

Ian - my soul.

Hannah - my heart.

Marty, my rock.

So, I find myself addicted to facebook and all it's brainless applications. Eh, it gives me something to do. At least the brainless applications I'm addicted to help with saving the rain forests, save the oceans, and donate to St. Jude.

Deb, thanks for the trip down memory lane! wow! Those pictures really took me back. We had such a Norman Rockwell childhood! No regrets. Meet me at the triangle!

Love you, Mir.

Gary & Tina - Love you both.

Love you all!

donor bowling!

Life is What Happens While You're Busy Making Other Plans

John Lennon knew what's up. I just wrote yesterday what I thought my plan was for the next month only to get a phone call this morning that changed everything.
Seems Vandy is ready for me. They have found "several" identical matches. Go figure. I honestly want to meet these people. One out of four siblings are exact matches. NONE of my three sisters match me OR each other!!! These matches they have found for me are "exact"! They MUST be some crazy people! We could go bowling.
So, I sit here waiting for a phone call from Vandy (I could call them but I need time to absorb this information) to let me know when I go. This trip is "Phase 1". It's basically tests. I'll be there for a couple of days being evaluated physically, mentally & emotionally. Am I a candidate? Is this the best route for me? Can I handle it? All those questions and more should be answered from this "Phase 1".
Answers are what I need. I feel so out of control. Not knowing is so hard. I'm a control person. Every one needs to feel a little in control of their life. At least I'm on my way to knowing. I think I feel a little relief. I'm not real sure what I feel. Anxious maybe. I can't seem to get this whole Graft vs Host Disease outta my mind. And then there's the anxiety of knowing I'll be in this tiny room for 3+ months with no immune system. What does one DO for 3+ months in a tiny room? Every one that comes in will have masks and gowns on. So many questions. I'm on my way to finding out! Finally!

I love you all!

Random Photos

My Kids : Wei Chwen, Hannah, Ian & Ashley

Ian & Ashley

Wei Chwen & Duckie

Ian & Emily (Ashley's oldest)

Karissa & Abby (Ashley's youngest)

Emily

Miss Annie

Duckie

Rinse & Repeat

Wow. My last entry is slightly depressing. I was having quite the festive pity party. Please keep in mind that this blog is an outlet for me, especially thru bad times.
I saw THE MAN the day after my last entry. (Which, by the way, was also the first day I started feeling much better.) He said the next thing was more of the same chemo. Fine. As it turns out, Friday I got a sore throat and went to see Peggy, she gave me Z PAK and told me that more than likely chemo would be put off for a week. It was. I now have to rid myself of this URI and start chemo THIS Monday with a side order of a BMB on Tuesday.
Other than being a snot factory, I'm doing pretty well. I sleep a lot. Cough a lot. As far as being productive....nah. That seems to elude me. I miss being creative. I'm not knitting, sewing, painting, putting pictures in albums, nothing. No energy. That's frustrating.
I'd now like to focus on the good...
I have the best care giver in the world!
My kids make me keep my sense of humor by constantly picking on me!
I have a comfy home to come home to after treatments and can sleep in my own bed.
I have wonderful sisters that love me and put up with me. (I don't give them a choice!)
I have a wonderful extended family!
I have very caring friends!
I have my laptop for wasting time and doing brainless things on.
Brownies! Hannah made them.
Potato & Cheddar Pierogies with steamed baby sugar snap peas with melted butter and salt! mmmmmmmmmm!
My joy, granddogger, Duckie.
My screened porch.
Kleenex with lotion.
Tulips.
Dr. Weeks. He's not only a very intelligent and knowledgeable Doctor, he's also a very kind and personable man.
My Peggy. I just love her.
My "other family" on 3 South.
Everyone at FCC.

I love you all!

The Waiting Game

Since my last post, all I've really done is wait. Lots of questions, no answers. So much swimming thru my head.

First, let me just say, this last chemo was soooo different from the first one. The first one, Cytarabine, I got for 24 hours, several days in a row (7 days the first round then 1 day less each of the other 3 times). My hair completely fell out all at once. Chemo week I felt good, the week after was the bad week. I slept for the first 2 days after I got home from the hospital and would literally detox. The rest of the week was rocky but the third week I would start feeling better and I would feel continuously better each day after. This was consistent. I knew what to expect. THIS time...there has been no consistency. Chemo was a couple of hours every day for 5 days. I felt okay that week but not great. I have felt continually worse every day after and I'm in my 5th week. Granted it's pollen season and tho I have never had allergies, I have been experiencing mild symptoms for the last few years. Is that why I'm not shaking this? I have no idea. I'm off all meds and have been for 3 days. The nausea is still there (seems to be letting up a little in the last couple of days) the heartburn is still there (seems to be letting up a little in the last couple of days) the fatigue simply will not go away. I sit. That's about it. I just sit. If any of you know me at all you know this is VERY hard for me. I'm not a sitter. I'm a doer. My hair is taking it's time coming out tho it consistently falls out. I shaved it but there are still all these itchy little coarse hairs that fall out and drive me nuts! I've had a PICC line in continuously for going on 5 weeks which makes showering an adventure. It's so tightly wrapped in Saran wrap that it should be fresh until next Thursday!

Everyone keeps asking me...what's next? when do you go to Vandy? Will you go to Vandy? What will it be like? When are you going to Seattle? (for a second opinion cuz they are tops in the country and I DO intend to go before the transplant) Have you found out if your insurance will cover the trip? Let me just say. I have no idea about anything. I'm having a hard time just getting my case manager to answer the simple question of are wigs covered. I give up. Beth said she had a personal assistant handle all her "stuff" when she was chemo brained. If I lived in a perfect world...

If you haven't noticed, this chemo has zapped the positive attitude right out of me. I'm tired. I have no idea what's going to happen to me next. There's no "plan". Yes, I'm suppose to get some answers tomorrow when I see Dr. Weeks (for the first time in 2 weeks). I have been asking Peggy and all she can say is, "Honey, I'm not privy to that information", but no one sets me up to see him. I almost feel like it's being avoided. Like he's breaking up with me and everyone knows it but me. And now, it's here. Tomorrow is the big day. Now I'm not sure I want to know. Normally I write down tons of questions when I know I'm going to see THE MAN. This time I can't make myself think about it long enough to think of the questions. Maybe it's me doing the avoiding. I haven't really pressed the idea of meeting with him. I know, one way or another, after tomorrow, I'll feel better. Just knowing. Fear of the unknown and fear of knowing is such a conflict. I keep reminding myself that there are SO many people out there that have it so much worse than I do, but I just can't seem to snap out of this...whatever it is. This one has been very emotional.

I'm not going to even get started on the medical expenses. Okay maybe a little. I thought I had last years all paid off only to find out I still owed the hospital $2 grand. Then we started all over again this year. My husband has a very good job (Thank God!). We have very good insurance as well (Thank God again!) But the medical bills still pile up. How do people get sick like this with no job much less insurance??? They lose their homes and everything they own that's how!!! I shouldn't complain. But I still do.

What a downer post. It's making me feel even worse so I either have to change the subject or get outta here. Problem is, these days all I am is this. I live, eat and breathe Leukemia. It's all I know. It's all I am.

I love you all!