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!
Saturday, September 12, 2009
This one's for Debbie at St. Frances...
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
We leave the 20th and start tests the 21st. Everything else stays the same. Less time sitting around there waiting! Yippee!
Saturday, August 22, 2009
Art Show Saturday August 22 From 2pm - 6 pm
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!
Friday, August 21, 2009
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!
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!
Saturday, May 16, 2009
Friday, May 15, 2009
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!
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!
Sunday, May 10, 2009
Happy Mother's Day!
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!
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...
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.
Thursday, May 7, 2009
The Sun is OUT!!!
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!
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!
Tuesday, May 5, 2009
Pins & Needles
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!
Love you all!
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!
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!
Saturday, April 25, 2009
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!
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!
Wednesday, April 15, 2009
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!
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!
Tuesday, April 14, 2009
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
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!
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!
Tuesday, April 7, 2009
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!
Tuesday, March 31, 2009
The Good, the Bad & the Ugly
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.
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.
Thursday, March 19, 2009
CAUTION!!! If you don't want to read "the down side" don't read this post!
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!
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!
Monday, March 16, 2009
Observations
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. 
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Love you all!
Friday, March 13, 2009
Return of the Chemo Brain...
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 = )
There are lots more but I'll stop here for now. Thanks to everyone that came! I had a wonderful time!
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!
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