OutsideTheCrayonBox

Art Show

2009-09-12T23:06:00.010-05:00

Thanks to Mir, Penny and all those wonderful contributing ARTISTS, the SHOW was a HUGE success!!! Words cannot express! Thank you ALL from the bottom of my heart!

Just a sample of these wonderful and talented people and some of the ART!

This one's for Debbie at St. Frances...

2009-09-12T23:02:00.002-05:00

Debbie was my nurse in Special Services at St. Frances Hospital this round for platelets & blood. Thanks, Debbie! Bless your heart, you're WONDERFUL!!!

date change

2009-09-12T22:59:00.001-05:00

We leave the 20th and start tests the 21st. Everything else stays the same. Less time sitting around there waiting! Yippee!

Art Show Saturday August 22 From 2pm - 6 pm

2009-08-22T00:01:00.004-05:00

Thanks to Mir & Penny & all the contributing artists! Janet Weed Beaver, Marjie Bingham, Kate Bradley, Tricia Franklin, Miranda Griffin, Amy & Terry Gower, Allison Furr-Lawyer, Zeinu Mudeser, Terri Panitz, Gary Parisi, Jing Shiao Yeh & so many others! Love you guys!

http://studiomgallery.weebly.com

2009-08-21T22:20:00.003-05:00

Been a while. It's been a rough ride, hence no updates. Last update was May 16th. I'll keep the catch up short. Chemo (5/18 - 5/22) was the hardest one on me yet. Took me a LOT longer to recover from it. I missed ANOTHER family reunion & ANOTHER of Hannah's recitals. I was in the hospital for 4 days with fevers. Lots of transfusions. When I finally started coming out of the fog, about a month and a half later, I developed shingles. For those of you who don't know what shingles are (I didn't), the chicken pox virus stays dormant in your body after you have them as a child. A compromised immune system + stress make the virus come out of retirement in the form of shingles. Now I'm sorry but this is a sick joke. You have a compromised immune system, you have stress so let's throw in some excruciating pain! Of course I don't do anything half way...mine turns into Post Herpetic Neuralgia. joy. The first week in July I started testing for MD Anderson. EKG, LIPID, Colonoscopy, Dentist, you name it, it was done. (passed all with flying colors btw). Still dealing with this PHN. Which brings us to August and Dr. Parmar (Houston) & Dr. Weeks (Memphis) decide I've been too long without chemo. 2 months. They want to make sure I stay in remission for the transplant. I fought it with everything in me (which ain't much these days). They won. On August 11 I started back on chemo. 4 straight days this time instead of 5. Week 1 went pretty well. Week 2 was 5 straight days of IV antibiotics. Tired but so far so good. Had to get 12 buttons of platelets yesterday and my counts went up to 111. Today they were 43 = ( I'll probably be getting platelets & blood on Monday, if not before. (Dr. Weeks' birthday is this Sunday, btw. 8/23)

Okay that brings us to the information I got today. I finally have a transplant date. This is what I know so far...
9/13 I leave for Houston.
9/14 - 9/18 I get all the tests I just had done, done all over again. bone marrow biopsy, PFT, echo, ekg, blood work. This is to make sure I'm good for the transplant. This will be done outpatient.
9/15 They harvest the cells from my donor. While we're here, let's touch on this. The National Marrow Donor Program is very strict about confidentiality. All I know is she is a 31 year old female. Not to mention an amazing person. After a year, if we both agree, we can be in contact.

Off subject, here's another little tidbit. They did HLM typing on my kids. It turns out Hannah is a partial match. She has the NK benefits so they have decided to use her blood as a booster. My transplant is NK Protocal. My donor and Hannah have the NK (Natural Killer) benefits in their cells. Their cells are natual killers against cancer cells.

9/23 Hannah arrives in Houston and they do an EKG & chest xray and give her a tour.
9/25 they give Hannah 1 of 3 Nupegen shots to boost her cells. She will get these 3 days in a row.
9/25 I'm admitted to the Hospital.
9/26 I start 4 days of intense chemo.
9/28 they collect Hannah's blood which takes 2 hours. This I don't understand and will be finding out.
9/30 I rest
10/1 Hannah's cells are given to me as a booster.
10/2 - 10/5 I rest.
10/6 I start 3 days of intense chemo.
10/9 They transplant my donors stem cells. This is also referred to as my new birthday but it's also goldie's REAL birthday!
10/10 They start watch for the cells to engraph. This normally takes between 14 & 30 days. The more I walk around the quicker it happens.
After engraphment I am discharged to a place close to the hospital and I'm tested every day for 7 days. Then each week after, it's less and less. Day 100 I'm released to go home.

That's all I know right now. That was a lot of information to find out today. I'm sure I'll come up with a million questions to ask before I ever leave.

I would like to take this opportunity to thank all my wonderful family & friends for their support, emails, cards, prayers and love. I have the best support system I could ever hope for. I especially want to thank my sisters. Beth for working so hard in finding us a place to stay while in Houston, for her encouragement and love and for giving of her time so freely while I'm in Houston to be with me as I need her. Susan for loving me and dropping everything to drive from Winter Park, FL to Memphis when I needed her. Jane for being exactly who I need her to be. I want to thank my kids for being there when I need them and for loving me. Mir for her tireless efforts in putting together a benefit art show for me and for being the bestest friend EVER! Last but most, Marty, my husband, my caregiver, my rock. Words cannot express.

Love you all!

A Very Cool Tree In One Of The Hospitals

2009-05-16T18:33:00.003-05:00

Houston as We Were Leaving...

2009-05-16T18:26:00.007-05:00

2009-05-15T22:07:00.003-05:00

My head is swimming...make that drowning, in thoughts and new knowledge. I don't know where to begin. First, let me say, I feel better than I have in over a year. Physically, mentally and emotionally. Also, I've (we've) made the decision on where to go for the transplant. MD Anderson. Houston is NOT my favorite city but as it's been pointed out to me over and over, I won't be experiencing Houston. I'm sorry that so many of you will be. I loved Nashville but I left Vanderbilt with such a feeling of doom. I walked thru the halls of Vanderbilt as we were leaving literally thinking "dead man walking". I walked away from MD Anderson with hopes for the future. Let me give you some amazing numbers. Stem Cell Transplant patients are put into 5 categories. 5 being high risk, 1 being very small risk. I'm a 2. Vanderbilt has a survival rate of 51% based on 1's and 2's. MD Anderson has a survival rate of 53% based on 4's and 5's. They gave me an 85% chance of survival where Vandy gave me a 45% chance. Where would YOU go??? More reasons...I LOVED Dr. Parmar. She was very calm, matter of fact, smiled, positive thinker, very confident, knowledgeable and just plain human. She hugged me! The transplant coordinator, Chris, was either a PR major or just very charismatic! Loved him! Dr. Parmar's nurse, Yousuf, made me giggle cuz he was so serious and professional. My financial advisor, Alex, was just so personable! Yes, it's a HUGE place. I understand why people refer to it as "Jiffy Lube" and a "Cattle Call" BUT!!! EVERYONE I saw more than once remembered me. The nurse that took my blood at 9 a.m. remembered me at 4:30 p.m. when I had to get more drawn. I can't even imagine how many people she had seen that day. They take patients back there 8 at a time and there's probably 10 stations. It takes about 10 minutes so you do the math. It's so big that you ride golf carts thru skywalks when going from 1 building to the next. The cafe downstairs is probably an acre and a half in size.

The game plan for the transplant is, 100 days in Houston, 4 weeks of which will be spent in the hospital, the rest in the Rotory House. I have to have a caregiver with me at all times ie Marty and/or my sisters. If all goes well, then I come home and go back every 3 months and eventually every 6 months for tests. I "belong" to MDA for 2 years. I can't be around kids under the age of 12 for 2 years = ( BUT I can be around the dogs if they have been to the vet. go figure. I can't play in the mud for 2 years = ( For those that don't know, I love gardening.) I'll survive. Worse of all!!!!! I can't pet a lizard for 2 years!!!! I was so looking forward to getting a lizard! = ) I can't be in crowds for 2 years. OH! My blood type will change if my donor has a different blood type! I've been 0+ for 51 years! I will come out maybe an AB- How weird is that? It's more important to match tissues than blood type.

So, I went to the dentist yesterday to make sure I had no infections (he has to sign this paper for MDA), I don't. I got my PICC Line put in today. I start out patient chemo on Monday for 5 days just like last time. Peggy! This is to keep me in remission. I'm going into this chemo with my best numbers yet. After my numbers come back up and I'm stable, I go to MDA for a week's worth of tests. Then they start the ball rolling on the transplant. ie contact the donor, etc.

For those of you that have told me you are working on Fund Raisers....All I can say is thanks. = )

Got the PICC without the use of Xanax = ) No Xanax for the dentist, either = ) Yeah, I feel good.

I'm sure I've forgotten tons of stuff...

Love you all!

Happy Mother's Day!

2009-05-10T20:24:00.002-05:00

It's the night before we leave for Houston and I have been so much more productive this time. I've gotten so much done this past week. Physically, I feel better than I have in over a year. Mentally, I feel almost like I used to. I don't have the feeling of dread that I had before we went to Nashville. Maybe becuz I've heard the worst already. Not that I expected to hear what I heard in Nashville. Maybe it's becuz I've done this once already.

I won't be having any tests this time. The schedule is smaller & simpler. Tuesday at 9:00 I have an appointment with New Patient Registration, 10:00 I meet with my Dr (Dr. Parmar) and 11:00 I meet with the Transplant Coordinator. That's it.

We're leaving at 6:00 tomorrow morning and should arrive around 4:00. Maybe we'll do a little exploring. I haven't been to Texas since 1971 and that was only for lunch in Dallas. Marty hasn't been to Texas since 1978 and that was San Antonio. After the appointments, we have the rest of the day. Then we leave Wednesday around 6:00 to come back home.

I have heard lots of opinions for both Vandy & MD Anderson. Thanks to all of you for your input, research and contacts. I'm just going to go open minded, then come home and make a decision. Gotta go with my gut.

Happy Mother's Day!

Love you all!

Correction...

2009-05-10T20:16:00.002-05:00

I misunderstood. The medical expenses are covered at both places. The travel expenses will be covered for the place I decide to have the transplant. I can live with that.

The Sun is OUT!!!

2009-05-07T18:03:00.004-05:00

Okay. This is not only to get you guys informed as to the latest but to help me get my thoughts straight.

I found out today that if I decide to go to MD Anderson for my transplant, my insurance will not cover anything I had done at Vanderbilt. If I decide to go to Vanderbilt for my transplant, nothing I have done at MD Anderson will be covered. I'll deal with that later.

I got a call from Vanderbilt this morning (they obviously don't know I'm going to MD Anderson for a second opinion). They gave me a list of things I have to take care of before my second evaluation. Go to the dentist to make sure I have no infections, get my last gyno reports, get a colonoscopy (oh boy!). She also told me they would be checking for illegal drug use, prescription drugs that I don't have a script for, alcohol and nicotine. hmmmm. I will talk to a Social Worker about where I will be staying for the 100 days (other than the hospital) and a Financial Counselor so I can turn over all my worldly possessions. = ) My next evaluation will take 2-3 days as an out-patient. Oh! and more chemo before I go. (Which I was suppose to start last Monday only I decided to check out MD Anderson first.)

Also, MD Anderson called this morning and I have an appointment for next Tuesday (the 12th). 9:00 - New Patient Registration. 10:00 - Dr. Parmar, 11:00 - Transplant coordinator. We've decided to drive to Houston on Monday (10 hours) and back on Wednesday. I decided to just go for the consultation and no tests because of insurance and my main concern is to see how comfortable I am there and if I like the doctor. If I decide to go to MD Anderson they can use my MUGA & PFT from Vanderbilt so I won't have to repeat those tests. I will have to have a bone marrow biopsy, blood work and either a CT Scan, MRI or PET.

Whew. So much information!

So, I had a bit of a meltdown yesterday (probably becuz we've had no sunshine in weeks!) and went to talk to my Peggy. While there, I met with a Nurse Practitioner that co-ordinated transplants at Baptist for 8 years. She was very encouraging in telling me that an exact match is VERY hard to come by and a 4 out of 6 point match transplant is common. Mine is a 6 out of 6 match. That makes me a MUD. Matched Unrelated Donor. So, there's no confusion, I'm having an Allogeneic Stem Cell Transplant. That means I use an unrelated donor. An Autologous transplant is where you harvest and use your own cells. With that you don't have Graft Vs. Host Disease (GVHD). GVHD is what can cause most of my problems. With a 6 point match, my chances are better. I will get GVHD no matter what. The severity is what is scary. Main problems it can cause are the donors cells attack my skin, mouth, liver, eyes...really any of my organs.

So...I decided to go to a therapist to help me get thru this and my insurance company sent me 4 PAGES of names. sheesh. another decision!

Had lunch with Mir today. She is a great cheerleader! "Call them NOW!" I got a lot taken care of. Thanks, Mir!!!

The only thing I have left to do today is I'm waiting for Dr. Weeks to call me back. Have a few questions for him and decide on a therapist. I am so freakin WIRED!!!

Love you all!

Pins & Needles

2009-05-05T17:31:00.001-05:00

I just heard from MD Anderson saying they had gotten the referral from Dr. Weeks and I should hear from them by Friday with an appointment date.

Love you all!

2009-05-05T00:05:00.002-05:00

So we went to Vandy. Loved Nashville. Very user friendly. Easy access to everything. Lots of good places to eat. Walking is my favorite mode of travel and walking in Nashville is the best way to go. Got there Sunday evening around 5 and as soon as we got settled, we walked. We walked over to Vanderbilt Hospital/Clinic. Walked thru and found our way around. Walked a different way back and stopped at Mellow Mushroom for supper. Had a wonderful Calzone that I couldn't finish. HUGE! Walked back to the Hotel and chilled. My first appointment was for blood work, I can't remember what time but we were about an hour and a half early and it was a good thing cuz we had a flat tire. Got the spare on and headed to the Clinic. Still early. Blood work went fine, I'm used to being a pin cushion. Then upstairs to meet Dr. Jagasia. Met with the research Doc first. He asked me about my AML history. What made me first go to the doc, etc. How much time do I spend out of the bed/chair. Should have given him my blog addy. = ) I can't remember! Anyway, then Dr. Jagasia came in. I'm sure the man is a phenomenal doctor. He's very confident, I've heard good things about him. I hear he's one of the best. But I still feel the sting where he slapped me across the face. I like people to be straight up with me but dayum! No compassion. Very clinical. I have a 40 - 45% chance of making it through this Stem Cell Transplant. IF I do, I have a 60% chance of it causing me long term health issues. What ever my donor is "predestined" to get, my chances of these issues are increased. I can't remember much else. I think I was in shock. Not only by the news but by the presentation. So, we left there and went back to the hotel, I think. It's kind of a blur. Actually, I can't remember what we did. I don't remember supper. I remember breakfast. Okay so the next day, Tuesday, I had a PFT & MUGA scheduled and no caffeine after midnight. great. The MUGA is a heart test. Radioactive something or another thru an IV to watch it go in and out of your heart thru this machine. Really was no big deal. The PFT is a breathing test. No biggie except I was almost over my URI but not quite. Have no idea what the results were of either. Left the hospital and got coffee at the nearest place possible! Got the tire replaced and as much as I loved Nashville, I was so ready to leave it!
Wednesday, I think it was, Peggy called me to tell me that I needed to get some more chemo. It has been 2 months and we don't want the Leukemia taking hold again. okay. This time I'll be in the hospital for 12 doses in 6 days so I'll probably be there 10 days to 2 weeks.
I'm not going to go into all that happened since then cuz it confuses the hell out of me. Yes, chemo Monday (today). No chemo until....
What it boils down to, I decided I wanted a second opinion from MD Anderson in Houston. It's a Cancer Center. They do 600 SCT a year and Vandy does 110. What we're waiting for now is to see if MDA can see me SOON. If I haven't heard from them by Wednesday, I'm to call Vickie (Dr. Weeks' right hand) back. If they can't see me soon, I go with the chemo/Vandy plan which has me doing the transplant around mid June. If they can see me, well, everything is up in the air again. So that's where I am now.

Love you all!

Peace Love & Beer

2009-04-25T23:36:00.003-05:00

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

2009-04-15T11:42:00.004-05:00

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

2009-04-14T15:32:00.015-05:00

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

2009-04-14T13:49:00.000-05:00

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

2009-04-07T22:13:00.000-05:00

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!

The Good, the Bad & the Ugly

2009-03-31T16:41:00.000-05:00

The Good

I had the most wonderful birthday! Mir came by in the morning, brought some birthday goodies (I LOVE the p.j.s!), we took a few pictures, then she took me to FCC for my cocktail. Got that done and Marty picked me up. Came home and the phone calls, text messages and the net Birthday greetings were non-stop all day! I have such wonderful people in my life! The day was so pleasant. I had a fund raiser on Facebook for AML for my birthday and the response was beyond my hopes! Thanks all!

The Bad

Saturday I knew things weren't quite right. Didn't feel bad just didn't feel good. Sunday, just a little worse. A little petechiae. Not as much as I have had before so I didn't panic. Figured we'd deal with it Monday morning when I went to FCC for CBC.

Monday FCC for counts. sigh. My platelets were at 0. Didn't even register. Peggy gave me my cocktail with a twist of vitamins & Nulasta while she set up for me to go to Germantown Methodist for platelet & blood transfusions. Little did I know it would turn into a 4 day stay. While there, Allison had a birthday, Ian celebrated (?) his 25th Birthday and Gary had a birthday. Happy Birthday! Also Marty had a FedEx anniversary. Busy week.

The Ugly
Another thing that happened while I was there...my hair started falling out. My favorite. It absolutely drives me crazy! Itchy little hairs! So Ashley, Ian's girlfriend, did the honors of shaving my head. First into a mohawk, then a little tuft of hair just in the very front, then the entire head. All of 3 South seemed to enjoy this little ritual. Chaplin Jack just kept walking by, glancing in, shaking his head and walking away. With the mohawk I looked very much like Manny the Mammoth from Ice Age. "I'm not fat! I'm poofy!" A good time was had by all.

I was realeased on Thursday. Got a good nights sleep in my own bed. Went to FCC on Friday for counts check and (sigh again) platelets sucked. Off to St. Frances for Platelets. They got us going fairly quickly. Gave me my premeds then there was a 1 hour delay on the platelets coming up. Once they got there, they were frozen and had to be defrosted. About half way thru I started having a reaction (probably becuz the benedryl was not at it's peek anymore) and having done this before, I knew what was happening right away. Nurse comes running in, sees the welts, runs out, calls Doc Weeks. By the time he called back I was COVERED! Gave me a steroid and by the time the bag was finished and I was getting in the car, all was pretty much cleared up.

The weekend was uneventful! I love uneventful!

Monday I went to FCC for Counts. All are finally slowly but surely rising on their own. No longer neutropenic! yea! Peggy put the blood kit together for me to FedEx to Vandy. Got that sent. Got a reprieve from FCC until Thursday! YEEHAA! So now I'm just working on getting some energy back. hanging out. doing a little here and there. Really want to make a quilt before I go to Vandy so I can have something colorful. Really want to get some pictures in albums. sigh (once again). amazing how fast a day can go by even when you aren't doing anything.

CAUTION!!! If you don't want to read "the down side" don't read this post!

2009-03-19T23:00:00.000-05:00

THE week...

I don't often get angry. Very rarely actually. I get sad, frustrated, overwhelmed, but not angry. What's the point? Nothing good comes from it. It doesn't solve anything. No, I'm more of a happy go lucky, one day at a time, seat of my pants kinda girl. Like Peggy says, "you can only eat an elephant one bite at a time."

This week, however, I saw sides of me that were very different to say the least. I've been angry more times this week than I have been in the last several years.

This is THE week. The week after chemo. If anything bad can happen, this is the week it does. Not just medically. ANYTHING! This is my exorcism post. This is the post where I'm going to get this week out of my system so I can move on.

Seer Sunday - feeling pretty good. starting to feel the downsides of chemo but all in all pretty good. My PICC line arm is a little swollen, red, feverish, and very tender to the touch. Never had this happen before so a little concerned.

Manic Monday - Antibiotic/fluids cocktail at FCC. Peggy takes a look at the arm and decides to give me my cocktail thru a new IV instead of the PICC line and then sends me to G'town. Meth. so Radiology can take a look. I took a xanax, I get a new PICC line put in the other arm and then OMG!!!!!!!!!!!! they pulled out the messed up one. Yes, I freaking screamed. and cried. and I was completely still as I did. = ) It seems the PICC line had some how gotten "irritated" (boy, can I relate to that) but not "infected". I would rate this procedure right up there with a bone marrow biopsy. From there I went home and started to feel what the week was gonna be about. BUT!!!! At least I went home!!!

Tuesday - I would call Tuesday...Anticipation. I was scheduled for my cocktail and a bone marrow biopsy. Got my cocktail, my CBC was in the crapper so Dr. Weeks said get platelets in the morning and then we'll do the biopsy after at his St. Francis office. Fine by me. Any excuse NOT to get a bone marrow biopsy.

Wicked Wednesday - Ah Wednesday. I know what I'm in for. I know there will be no putting it off again. I'm prepared. HA! Up at 5:30. (which is the devil's time of day!) At St. Francis Hospital by 7:30. Get platelets without a hitch (love that benedryl). Next door to FCC for cocktail and BMB. Still kinda drowsy from the benedryl. 2 doses of demerol. BMB. I won't go into it here but I've decided that demerol intensifies pain to me. I could be wrong. And I really paid attention this time to see what part was so bad that made me get so worked up??? It isn't the actual biopsy. I'm dead for that. I feel pressure but not pain. It's the damn shots that deaden you!!! Once I got thru those, there was no turning back! I was hysterical! I don't get hysterical!!! and I was ANGRY!!! I don't get angry!!! I was yelling and screaming NEVER AGAIN!!! okay. so who is this hysterical woman that is angry and screaming???

It took me the rest of the day to calm down. I slept for all but about an hour of the rest of the day. Oh. One more thing. At the end of all this I get told I'll be getting 2 units of blood tomorrow morning at 9:00 at St. Frances. sigh.

Thursday - we haven't even begun to see anger yet. = ) Yesterday's was a tiny little voice. Today we meet the monster herself. I woke up to a demerol hangover. Was at St. Francis at 9:00. Feeling positive cuz today is just blood and my cocktail. Easy day. I saw the most amazing red tulips on the way there. Across the entire front of the house. Simply beautiful! "You're on the schedule but we have no orders. We'll call and take care of it. In the meantime we'll get you registered blah blah blah". No problem! We do the paperwork, all is going well, they get me upstairs to a room cuz an old lady in a Michael Jackson germ mask is not what a hospital needs in their waiting room. = ) Time goes by. Marty speaks with Dr. Weeks office. They've faxed the orders for the second time. cool. Time goes by. My nurse keeps telling me there are no orders. I go to the nurses station and offer to go next door to Dr. Weeks' office and pick up the damn orders myself and to hell with fax machines! They said no. hm. I called Dr. Weeks office. Jackie says she has faxed them 3 times. I say to what number? She tells me, I tell the nurse. We have orders! They do the type and cross. Time goes by. It's now 1:00. I go to the nurses station and from no where this old woman starts getting hysterically angry and omg! it's me! I tell them "forget the blood! I want to go home. NOW!!!!!!!!!!!!!!!!!!!" It's freaking 1:00 and we are NO WHERE! I had a 12:00 appointment at FCC for my cocktail. That's been canceled and I HAVE to get it so now I get to stay longer and get it at the hospital! "But, Mrs. Bishop, your blood is here now." They pre-med me (go figure). For the next 2 hrs, I lie sobbing on a hospital bed while blood gets pumped into my body. I'm not saying this for aws or poor babys. I'm saying this becuz it's what happened. I'm over drugged and overly sensitive to EVERYTHING! This isn't the end. My machine goes off at the end of the first unit. The nurse comes in, turns it off, and looks all around the room. hm. My 2nd unit of blood is....lost. sigh. I don't even care anymore. I quietly turn over. She calls the blood bank, it's found rather quickly (it had been sent back in a cooler...oooops.) and on with the show. I have so removed myself from the situation there is just no reaction left in me. At 4:00 they come in and tell me they have to move me to another room cuz this section closes at 4:30. whatever. At 5:30 they start the antibiotics and I'm out of there by 6. Notice how quickly I end this section. I got out of the hospital even quicker. As soon as the machine went off, I started down the hall and the nurse had to chase me down to "unhook me".

Today is Friday. I'm suppose to only get my cocktail at 10:30. Mir's taking me. It's also my birthday. I plan to spend the weekend as far away from Drs. and Hospitals as I possibly can. If I can do that. It's a good day.

Thanks for letting me vent.

I Love You ALL!

Observations

2009-03-16T20:09:00.000-05:00

My kids look at pictures of me from just 2 years ago and tell me I "look weird with hair". They have had 19 and 23 years looking at the same mom but the way I look now is how they see me and remember me. I don't see me as the much older, graying, tired woman I have become of the past year. I still see me as me. Okay, until my eyes catch a glimpse of that old woman in the mirror that has taken my place. This has prompted me to find the (very few) pictures I had taken, that I actually like of me, before my adventure began last May. I'm posting them here as a reminder for my kids and for anyone else that doesn't still see me as I do. So neener.

Love you all!

Return of the Chemo Brain...

2009-03-13T17:51:00.000-05:00

I got my last dose of chemo today. All has gone very well. Had to get platelets yesterday so I slept all day due to the benadryl. Tuesday & Wednesday, as far as I can remember, were good days. Today I'm doing the Tim Conway shuffle on the outside and the daytona 500 on the inside. Platelets went up on their own after the transfusion, which is very good. HCT went up as well, without a transfusion and that's REAL good. Whites are dropping as they're suppose to and that's good except next week should be the bad week becuz of it. Next week is FCC everyday for antibiotics and fluids and hopefully no hospital for transfusions or fever, etc. Being at home this time has been so wonderful! (It's a little easier on Marty, too.) I'm posting a picture of my Chemo Nurse, whom I can't imagine life without now. Her name is Peggy but here she's Daisy = )

Enough wonderful things can't be said about this wonderful person in my life. I just want to take her home with me.

Thanks to Mir, I have pictures from the cook out we had Sunday before this adventure began on Monday so here are a few of those....

There are lots more but I'll stop here for now. Thanks to everyone that came! I had a wonderful time!

Love you all!

I'm off to see the Wizard...again

2009-03-10T17:06:00.000-05:00

Here we go again. The facts are, I decided enough time had passed and the whole Leukemia thing was far enough behind me that it was time to take care of "normal" healthcare. Get my eyes checked (they got much worse with the chemo), go see Doc Gina for "rue"tine stuff, dentist, you know the drill. So, on February 20th, I go see Gina, she runs the usual blood tests, gives me a script for celebrex cuz of pain in my joints, all that "normal" stuff. On February 23rd, I go get my eyes checked. On February 25th, Gina calls me back in cuz she doesn't like my blood work results. I get it retested and she says..."your counts are half what they were when you saw Dr. Weeks in January. You need to go get a bone marrow biopsy tomorrow". Uh, no. Gina, being Gina says, Uh, yes! FINE! So on February 26th I get to go see my beloved Dr. Weeks for a beloved bone marrow biopsy. On March 3rd I went back in for the results, it's back. I went thru all 7 emotions, you know, denial, anger, depression, accepts, ect in 2.3 seconds flat. The plan was the same as last time. 1 Month in the hospital getting chemo 24/7 the first week, feeling like a zombie the second cuz the chemo literally wipes out your white blood cells, and then building me back up week 3 & 4. Then I was to go to Vanderbuilt in Nashville to do all the pre stuff for a bone marrow transplant, then come home until they were ready for me then go back for 100 days. In other words, 09 was planned out for me. Then on Friday morning, March 6th, I get a call from my sweetest nurse, Miss Peggy at FCC, and she says, change of plan. I'm getting my chemo as an out-patient!!!! She totally made my day! I go to FCC every day for a couple of hours for pre-meds and chemo for 5 days. Doc Weeks is trying something different this time working closely with my doc at Vanderbuilt, Dr. Jagasia. So yesterday, I went to Germantown Methodist at 8:30 a.m. (the devil's time of day) and got my PICC line put in. Started chemo yesterday (a beautiful royal blue!), took a xanax for the PICC line procedure so was asleep most of the day, thru chemo, thru breakfast, thru sex...j/k. Today was my second day of chemo, all is well, I feel good, I'm awake. Visitors and phone calls are welcome until I turn into a stick in the mud.Love you all!

ahhh November...

2008-11-05T17:30:00.000-06:00

Autumn is my favorite time of year. The leaves are changing color and the world is just an amazing place to be! If I were to ever have a car accident it would be in the Fall. So hard to keep my eyes on the road and not the beautiful landscape.

So here it is November. We've had a few birthdays pass by and a few more to come. Happy Birthday!

11/3 - Terry & Rhonda
11/ 5 - Wendy (Mama of that beautiful baby boy pictured below)
11/26 - Harry
11/20 - Happy Anniversary to Dan & Wendy!

and in case December gets crazy as always....

12/2 - Abby's 14th birthday! She's really starting to show her age but still loves cookies!
12/5 - Howard
12/6 - Devin
12/11 - Summer
12/18 - Casey
12/22 - Mike
12/27 - Joseph
12/18 - Happy Anniversary Dad & Shirley

Went to Art in the Highlands on the 25th. There were some really beautiful paintings! It was so good to see so many friends that I haven't seen in such a long time!

We'll be having a big Thanksgiving this year. Mom, Jeff, Harry, Patty, Wayne, Lisa & the 4 of us. Marty just finished building us a new dining room table cuz our other table just wouldn't have been big enough! After I get it painted (I'll post a picture) I'm finally going to get started on the hall bathroom. It's been screaming for help for years and I just can't ignore it anymore. I'm thinking venetian plaster...

It's nice spending time at home, getting things done & starting to feel more normal (in my sense of the word).

love you ALL!

Happy Halloween!

2008-10-22T22:22:00.000-05:00

A NEW Birthday!

2008-10-22T22:17:00.000-05:00

Conner Daniel Strohschein was born on September 28, 2008! Welcome to the world, little guy!

Thanks Wenny!

A quote I read and liked...

2008-10-21T21:02:00.000-05:00

I didn't make it thru chemo just to end up on the couch!

Talk about men getting in touch with their femine side...

2008-10-21T20:59:00.000-05:00

Well, I'm in touch with my masculine side. He just happens to be gay!

So, I asked Hannah "How do you vent anger?" Her reply...

2008-10-21T20:56:00.000-05:00

"I blow up balloons on a trampoline with an elephant while humming the ABC's."

the love stuff...

2008-10-21T20:52:00.000-05:00

I want to thank all the wonderful people in my life for the visits, the calls, the care & support, the love shown, the cards & gifts & all the emails. I'm one lucky girl to have you in my life!

The fun stuff...

2008-10-21T19:48:00.000-05:00

I missed a few birthdays...
9/1 Happy Birthday Chuck! Hope it was the best!
9/7 Wayne's Birthday
9/19 Papa's Birthday (he woulda been 85!)
Of course Marty's Birthday was on 9/28
Hannah turned 21 on 10/8! (more on that later)
10/9 Jane's Birthday (She was here!)
10/10 Susan's Birthday!
10/18 Robin's Birthday. Happy Birthday, Rob!

Upcoming Birthdays & Stuff....
10/27 Happy Birthday, Cerra!
10/28 Happy Birthday, Gabby!
10/28 Happy Anniversary Steve & Alysia!
10/30 Happy 32 Jane & Tommy!!!!!!!

I'll stop there. Hopefully I'll post again before November and get those birthdays up then. Let me know if I left any one out. It wasn't meant to happen! Honest!

Wayne & Hannah went to Birmingham for Wayne's birthday and she took him to a Bama game. He can't help that he's from there! = )

Stix was a part of the "Taste of the Town" this year and won Gold for Entree and Silver for Appetizer! How cool is that??? He served Hibachi Shrimp and Sushi. I was so excited for him! The only other category was dessert and he only had fortune cookies for that or I'm sure he would have won that, too! So that's what we did for Marty's birthday, went to the "Taste of the Town! Had a great time sampling food from different restaurants and mmmm the wine!

On 10/3 I went to the "Arts in the Park" festival. It was my first big outing and I had a blast and was VERY tired when I got home! It was a good tired.

On 10/6 Jane came! We had so much fun! We went to Beale Street for Hannah's birthday. Hard Rock for dinner. Left the young'uns there to party the night away. Hannah had a great time! Took Jane to Stix the next night for her birthday. I need to scan that pic and post it. *mental note* On the 10th Hannah and Wayne left for Vegas. She was completely amazed! She's gonna send me a few pics to post of her trip but hasn't yet. (hint) They went to see Phantom and she said it was amazing! Jane helped me get started on some photo albums. What a project this is turning out to be! Try organizing 50 years worth of pictures! Oh my gosh! Jane went home the 12th = (

Hannah & Wayne got back the 14th and while Marty & waited for them to fly in, we went and bought me a new car! = ) I'll post a pic *another mental note*

Had lunch with Mir on the 17th (Friday), she's such a busy girl! She gave me a couple of tickets to this years Vesta so Marty & I went Saturday.

The Horse Auction (see previous posts) was Saturday. Gary's & Mir's horses earned big bucks for the charity! I'm so happy for them both!

Today was the Stix/Bonefish luncheon "Fishing for a Cure" for Relay for Life. Hannah, Ian & I went. All proceeds including gratuity went to Relay for Life & the American Cancer Society. All of the servers and cooks VOLUNTEERED their time for this event. Way to go guys!

Up coming dates...

This Friday & Saturday (October 24 & 25) is the private showing of original paintings by Johnathan Harris at Fran's house. That should be good. Probably go Friday cuz....

Saturday October 25th is Art in the Highlands from 3-8 A private showing of the art of MIR & GARY!!!!!!!!!! Now seriously, folks! How cool is THAT???

As much as I've typed I'm sure I have left things out. I'll try not to go so long without posting this time.

Love ya!

Last Chapter

2008-10-21T18:51:00.000-05:00

I have put this off long enough, I guess. Now that it's over, I want to believe it was all a dream and pretend that it didn't really happen. That's why it has taken me so long to update. This will be my final post about my lost weekend. After this one, it will be normal (hopefully fun) things I will write about. This doesn't mean I won't nag you to give blood and update you on fund raisers blah blah blah. = )

Okay, the beginning is the only place I know to start and my memory is not the best, so a lot will be left out, I'm sure. My last post was August 21st so I'll start there.
Went back into the hospital for my last round on August 25th & came home on the 28th. The time I spend getting chemo is really not too bad once you get passed the PICC and anxiety. I saw my Leukemia twin (She was right across the hall, in for a fever. She was about a week ahead of me thru all this) She was going home the next day but that night we were running back and forth between our rooms visiting and the nurses thought it was funny. = )
So chemo went well, I did more research on AML and messed with the nurses. One of the techs got me interested in a show you can watch on your comp called "LOST". It helped pass the time and now I'm in Season 4. Too funny. I DON'T WATCH TV! Anyway, I slept for the first 3 days home (as usual). My counts sucked when I had them checked on the 2nd of September so I got a shot of nulasta and they told me they were going to set it up for me to get blood and platelets at St. Frances (Germantown Methodist doesn't do outpatient transfusions anymore. go figure.) on the 4th. Oh goody. A new hospital where I don't know anyone or the way they do things. my favorite. I got there on time. They put me in my room immediately....and I sat there. For 2 hours I sat there without even a hello from the nurse. I'm like uh-uh. So I get up and go find one and with a carrot in my mouth and leaning against the wall, they got a "What's up, doc?" "Oh! Your nurse is getting someone ready for surgery and will be with you as soon as she can." Yeah. Thanks for letting me know. I'm already in a strange place...been poked and prodded till I'm crazy. Just give me a break and let me know what's happening. That's all I ask. After that when my nurse finally came in, what a sweetheart!!!! Did I feel bad for getting upset? nope! But I really did like her a lot and the rest of the day was a breeze.
Went back to FCC on the 5th and my counts still sucked even after the transfusions. sigh. Started feeling pretty bad on the 6th, started running a fever on the 7th, back to Germ. Meth. the 8th. This was probably the worst week of the last 4 months. On the 8th I got more blood and platelets, on the 9th another transfusion & a CT Scan, on the 10th more platelets, a chest x-ray and IV Magnesium, on the 12th more platelets and a Cat Scan on the 14th 2 more units of blood and they set me free. Marty says I was out of it thru most of it. I don't remember much but I do remember feeling horrible and that it was never gonna end. But it did and here I am back to my ole pain in the ass self. = )
On the 15th I went back to FCC for my CBC and although it wasn't great, it was better. Saw Dr. Weeks (God love him!) on the 16th and got released until the 30th. yeehaaaa! On the 30th things were looking good so he gave me another week off. I went in on the 7th and he started to give me a 3 month reprieve but I opened my big mouth and told him about a few concerns I had and he ran some blood tests and told me to come back in 6 weeks. STILL! 6 weeks is a lifetime! I was happy. Still don't know the results of the blood work cuz I got so caught up in Jane being here I forgot to call until today and Loretta (Dr. Weeks' nurse) will call me tomorrow. So...there ya go. All caught up on that subject, I'll start a new post for the fun stuff. = ) Oh! One more thing. I can't say enuff good about G'town Meth nurses! Most wonderful bunch of caring, loving women in the world!

Random Quotes

2008-08-21T16:37:00.000-05:00

Finish every day and be done with it. ~ Ralph Waldo Emerson

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort. ~ Herm Albright 1995

I can handle reality in small doses, but as a lifestyle, it's much too confining. ~ Lili Tomlin

Parting your soup is not a miracle. It's a magic trick. A single mom who is working two jobs and still finds time to take her kid to soccer practice...that's a miracle. A teenager that says no to drugs and yes to an education...that's a miracle. What people don't realize is...they have the power. You want to see a miracle? Be the miracle. ~ God (from Bruce Almighty)

The biggest disservice you can do your kids is to give up who you are to raise them. ~ Susan Sarandon

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Update

2008-08-21T16:11:00.000-05:00

After I got this all updated (August 10), I went out to the screened porch and sat down to call Susan, looked down and discovered a bad case of petechiae on my feet and lower legs. That prompted a phone call to Dr. Weeks which landed me in the hospital over-night and 12 buttons platelets, 2 units of blood and a bag of neupogen. sigh. Back to the doc the 12th and my numbers were up so they said, "If no problems - be here Monday to check numbers and go in for round 4." I had my numbers checked Monday (the 18th) and, alas, they were low (I had a feeling) so we put it off until the 25th. That's where we are now...waiting for the 25th. Jane, on the other hand, went in on the 18th (without me) and had her other hip replacement surgery. All went well and now she is enjoying her percocet. Way to go, Goldie!

now that I'm caught up...

2008-08-10T13:34:00.000-05:00

...let's talk about blood. In just my first stay at the hospital I was given 8 bags of Red and 13 bags of Platelets. I can't give it back. I would if I could. They don't want my blood. go figure. So here I am asking all of my friends and family to help me and others like me by donating blood. I'm not gonna go on and on about it, I'll just say, it would mean a lot to me (and others) for you to do what I'd like to but can't. For those of you that are local:
Germantown
2095 Exeter
901.756.8585

Collierville
875 West Poplar
901.850.9291

Bartlett
7505 Hwy. 64, Suite 109
901.384.9898

East Memphis
920 Estate
901.767.8585

Tennessee Medical Center
Paul W. Barret, Jr. Center
1045 Madison Ave.
Memphis
901.522.9198

give blood. give life.
http://www.lifeblood.org/

Upcoming events...

2008-08-09T22:46:00.000-05:00

Goldie goes into the hospital on 8/18 for her other hip replacement.
I go back the same day for Round 4 (and hopefully final). I should (hopefully) come home on the 21st.
Marty turns 55 September 28th.
Hannah turns 21 (Lord help the world!) on October 8th.
Goldie has a birthday (see how nice I am not telling which one?) on October 9.
Poosie has a birthday (see above) on October 10.

And here it is...August

2008-08-09T22:33:00.000-05:00

I spent the first 2 days of August asleep. Doesn't get any better than that. = ) I felt perdy good on the 3rd and came out of the cave. Hannah left for Pensacola for a few days of rest with Moo. Thinking this one's a breeze! Had to start neupogen shots on the 6th thanks to a low WBC. Felt really good until the 7th. Platelets dropped and had to go back to the hospital for a transfusion. Not too bad. Platelets only take about 15 minutes! (Once they get started!) Was there in Same Day Surgery for 4 hours. Thanks to the premeds, I slept the rest of the day. Ms. Peggy wanted me to get blood, too, but there is such a shortage here they wouldn't give me any until my number reached 21. More about blood later. Okay so 3 days of neupogen shots, platelet transfusion, felt a little dizzy, tired, a little nausea, all in all, not too bad this round. My numbers (except WBC) were up on the 8th. Felt about the same today. Tired, but not enuff to sleep, a little dizzy, a little shaky, a little nausea. For the type chemo I'm on, this is really good! That brings us up to date! (finally!)

the rest of July...

2008-08-09T22:25:00.000-05:00

Went home the next day 7/9. Beth had to go home on the 12th. Of course I started feeling tons better after. = l The following 3 weeks were absolutly the BEST! I almost felt normal. Had energy! So, I did what I would normally do, I painted the screened porch! = ) I love it! I'll post pics here when....ahhh you know the story.On the 28th, back for Round 3. It was kinda hard to go after feeling so good for the last 2 weeks! But I removed myself, as usual, and did it. This time I was a little more coherent and spent most of the time doing research on AML INV (16). Any questions? Just ask! haha! Since I ODed on chemo last time, Dr. Weeks cut my chemo back to 6 bags over 3 days. What a difference that made! Went home on the 31st feeling pretty good...just tired.

Annie...

2008-08-09T22:23:00.000-05:00

While i was in the hospital the most unbelievable thing happened. Annie turned 15 on 7/8!!!! I have never had a pet live so long! Nice to break the curse!

Beth...

2008-08-09T22:22:00.000-05:00

Beth came on 7/5! Was suppose to be home for this planned visit = ( but it was good to have the company at the hospital and she cooked for my family. = )

the rest of June...

2008-08-09T22:21:00.000-05:00

Back in the hospital on 6/23. Round 2. I know I said I was clear. My leukemia is in remission. There are 2 phases to the chemo. The first (3 weeks in the hospital with chemo 24/7) is call the induction. Then you have 3 more rounds to make sure none of those little bad cells are hiding and those 3 rounds are called consolidation. Dayum I've learned a lot = ) This time I get 2 bags of chemo a day for 4 days. On the 24th I get the surprise of another bone marrow biopsy! My favorite! My third one. great. I can't remember why, don't want to.Went home on the 27th. Sick as a dog on the 28th, 29th, 30th, 7/1.No wonder! I need more transfusions! Yeah! Do that on the 2nd. Was at the hospital 6 1/2 hours.But! There's more! I get readmitted on the 3rd! So sick. When your White Blood Count is low, you're prone to infection becuz the white is what fights it off. Apparently, I got infected with some random germ. Lots of antibiotics. Who knew?

Poosie...

2008-08-09T21:46:00.000-05:00

Poosie came up (drove straight thru from Orlando) on 6/12. I felt pretty good (just grumpy due to hives from being allergic to one of my meds) the week she was here so we did quite a bit of shopping. = ) Didn't buy alot but it was fun getting out and hanging with her.
Found out which med I was allergic to & the hives finally cleared up.

The horses are coming!

2008-08-09T21:33:00.000-05:00

In all my glory (see photo below) Marty & I went to the Germantown Charity Horse Show on 6/10. Had a wonderful time! Was there with Gary, Tina, Mir & Robert. So nice to be out of the house (& hospital!) not to mention all the horses on display painted by such talented artists! Mir & Gary both were chosen to paint a horse. How cool is that?? Only 20something artists were chosen! There are some links to the right. I'll also be posting some pictures here when I get around to retrieving them from the hard drive disk of my last comp. = ) Or (becuz we all know how slow I am) maybe I could get Mir & Gary to email pics of their horses to me. = ) (hint)

On and on and on...

2008-08-09T18:25:00.000-05:00

I've had a break (and stemed veggies from Wei Chwen!) and I'm back at it. I thought you guys might like to see a picture of me after chemo, steroids, hives and tons of other intrusive things.

Lovely, eh?

To pick up where I left off...

2008-08-09T17:30:00.000-05:00

I was admitted to Germantown Methodist on 5/12/08. Due to a few PICC problems and low platelet count, I didn't start chemo until 5/13. I got chemo (Cytarabine) 24/7 (literally) and finished up on the 20th. Before I go any further just let me say...the nurses on 3South ROCK! Samantha was my nurse that first night and she was incredible! Let me tell ya folks, that first night's perdy scary.
During my initial 3 week stay at the hospital I found out how blessed I was. Marty, Ian, Hannah & Wayne, Moo, unbelievible friends - Mir (came by with tulle and other things and decorated my room with color), Gary, Tina, Fran, Jeff, Allison, Lisa, Mir's Dad, Karen, Jeff, Carol, my sisters, the nurses, Doc Gina, Dr. Weeks, Jan, Chaplin Jack.
The initial 3 weeks also consisted of lots of platelet & blood transfusions, balloons, lots of blood tests, flowers, lots of drugs, lots of cards, lots of sleep, lots of hot flashes, lots of prayers, lots of heartburn, bone marrow biopsies, hairloss.
Goldie came on 5/27! So excited! Loved her being here!
Also on 5/27 I got the results of my 2nd bone marrow biopsy - CLEAN! It took about half the day for that to sink in.
May 30th was Hannah's recital. Needless to say, I couldn't go and I think that was the first time I cried since this adventure began. I was so glad Moo and Goldie were here to go! Hannah dedicated her solo to me = l
Went home on 6/3!

still coloring...

2008-08-09T16:54:00.000-05:00

So here i am again, almost 2 months later. I had such good intentions of posting and keeping everyone informed but, my definition of chemotherapy is a "drug induced temporary lobotomy". So there you have it. It's a good thing I never got around to sending the blog to anyone! haha! So now that this whole leukemia adventure is drawing to a close, I'll give it another go and try to catch up.

A few things I'd like to hit on...

I missed the Family Reunion in May and didn't realize just how bad until now.

My best friend from childhood, Debbie, turned 50 on May 30th. = )

Latest Adventure...

2008-06-12T10:28:00.000-05:00

Normally, I can't sit still. I have to be doing something all the time. And I love being with people. Love socializing. For the last, oh I don't know, it's been almost a year now I guess, I've been tired. Real tired. Wanna just sit and stare tired. Everything hurt. Lower back, hips, knees - all my joints! I attributed the tired and hurting to my job and age and the abuse I have put my body through over the years. Then this rash appears. I blame it on too much sun. I had decided to go to Doc Gina (the best doc ever!) with my list of complaints after we finish this lawyer's office job downtown. Then i get an Upper Respitory Infection. So I went to see Gina on 5/5/08 and gave her my list of complaints with emphisis on the URI. She checks out my list and orders some blood work and tells me to prepare myself to go into the hospital. I look at her like she's crazy. Next thing I know she's sending me to another doc, a specialist, across town. "go now". (Turns out to be an oncologist/hemotologist.) So I head over there, more blood work. Says come back Wednesday (5/7) for a bone marrow biopsy. um...okay. Wednesday I go back and get the biopsy - not something I recommend to do for fun. Go back Friday (5/9) for the results. Diagnosis: Acute Myeloid Leukemia with INV(16). Which means my 16th chromosome is inverted. Who knew? Prepare to go to the hospital on Monday (5/12) for 3 weeks with 24/7 chemotheropy. excuse me?

GREAT NEWS!

2008-06-11T18:17:00.000-05:00

Beth is clear! = )