It's official! My blood counts have come up and I'm going home tomorrow!
Yes, I'm dreaming of my bed, of my children and just getting out of this small space...view and all...there's no place like home!!! Now will begin the recovery process but one big hurdle is over and apparently I, once again, have been the perfect patient. Because I had Bone Marrow this time not stem cells, the doctor said it is commonly a slower process and usually no one is released before day 20 and up to day 25. So, prayer shawl, prayers, love, positive thoughts and all my loving community that has engulfed me with the ability to focus on healing!
Just for those who are curious, donor get to pick giving bone marrow or stem cells. Stem cells means they take "booster" shots for five days and then have them harvest all the excess stem cells via IV (which seems the least invasive). Bone Marrow means the person undergoes a minor surgical procedure, going under anesthesia so they are knocked out while the team basically takes 100 bone marrow shots into their large bones to collect direct marrow. That means my donor really is feeling it for the next month...what a brave and courageous thing for her to do....it feels my eyes with tears to think a total stranger did this and is saving my life (pause and say a thank you prayer to her). I won't be able to find out who she is until at least two years (I guess if she approved me being able to contact...figure I'll cross that bridge when the time comes). By the way, many have asked about being a donor. I have information pamphlets on it and will very much be a mouth-piece in the future...so anyone feel free to ask me more about it if you are interested. I can give you a pamphlet what you decide to do with it is completely up to you.
Ok, HOME TOMORROW!!! The next few days will be filled with family home-coming time and my caregiver's arrival so expect a delay before more news. Time to join lots of helping hands if you haven't yet. Lots of ways to support but the biggest is your gifts of prayers and love. Thank you!
Thursday, February 4, 2010
Wednesday, February 3, 2010
Day +13
Numbers jumped from 200 to 500 today....yeah! That puts me on track for a possible early release...meaning Friday or Saturday instead of Monday! That is, of course, nothing unforseeable happens between now and Friday. Wearing my prayer shawl and keeping the good vibes coming my way so I can go home!!!
Tuesday, February 2, 2010
Day +12
So far all is smoothly proceeding along...Doctors say all is well and I'm just doing super.
Little mucuscitus (sp?) issues with a sore throat but normal for the low blood counts. This is a much slower process then the Allo transplant so numbers recover slower because of donor system working to take over while they still give me GVHD (graft vs host disease) anti-rejection medications....which I will be on for months until my tests come back 100% donor. Then, among many other "watch" things, I can't be in the sun much for the rest of my life....urgh! First thought is my PartyLite Trips, the Oregon Coast (not that we have alot of sun to worry about but it happens!), and fishing. The PartyLite trips will see me linen dressed, with my hats and in the shade. Apparently the sun can activate GVHD for the rest of my life. Well, minor detail for life!!!!
As I mentioned, my throat is bothering me a little but its actually on the recovery path now....day 12 and they expect my numbers to really start increasing over the next 2-3 days. Projected date still Feb 8th to go home....a full month...yee gads! I'll be so happy for that. My caregiver, Becky Stone, arrives Feb 6th to settle into the house. And then we'll settle in with the girls too!
I can hardly wait to see my girls. Had to miss both of their Birthdays Jan 16 - Lauren now 18 and Feb 1 - Kathryn now 11. Scott helped organized great Birthday events for them so they had wonderful birthday celebrations with friends and family. All has worked out fun for them and I'm promising a special visit for a special dessert of their choice when I can enter restaurants again. That should make for fun!
Update on Margaret's colon cancer, she's receiving radiation here in Oregon and then will return to NYC for additional chemo (if she chooses). The plan if for her to move permanently to Oregon as of July 2011. It was still a shock to hear she had tumors developed all through her spine (not the cord). She's doing better now emotionally and feels good about the treatment plan at present and returnning to NYC to get on with life to prepare for her move in 18 months. Please send some prayers her way!
Hugs to everyone...just a week or so more to go!!!!! (at least in Hospital)
Little mucuscitus (sp?) issues with a sore throat but normal for the low blood counts. This is a much slower process then the Allo transplant so numbers recover slower because of donor system working to take over while they still give me GVHD (graft vs host disease) anti-rejection medications....which I will be on for months until my tests come back 100% donor. Then, among many other "watch" things, I can't be in the sun much for the rest of my life....urgh! First thought is my PartyLite Trips, the Oregon Coast (not that we have alot of sun to worry about but it happens!), and fishing. The PartyLite trips will see me linen dressed, with my hats and in the shade. Apparently the sun can activate GVHD for the rest of my life. Well, minor detail for life!!!!
As I mentioned, my throat is bothering me a little but its actually on the recovery path now....day 12 and they expect my numbers to really start increasing over the next 2-3 days. Projected date still Feb 8th to go home....a full month...yee gads! I'll be so happy for that. My caregiver, Becky Stone, arrives Feb 6th to settle into the house. And then we'll settle in with the girls too!
I can hardly wait to see my girls. Had to miss both of their Birthdays Jan 16 - Lauren now 18 and Feb 1 - Kathryn now 11. Scott helped organized great Birthday events for them so they had wonderful birthday celebrations with friends and family. All has worked out fun for them and I'm promising a special visit for a special dessert of their choice when I can enter restaurants again. That should make for fun!
Update on Margaret's colon cancer, she's receiving radiation here in Oregon and then will return to NYC for additional chemo (if she chooses). The plan if for her to move permanently to Oregon as of July 2011. It was still a shock to hear she had tumors developed all through her spine (not the cord). She's doing better now emotionally and feels good about the treatment plan at present and returnning to NYC to get on with life to prepare for her move in 18 months. Please send some prayers her way!
Hugs to everyone...just a week or so more to go!!!!! (at least in Hospital)
Friday, January 29, 2010
Day +9
Well, my blood counts are at the bottom and now we have to get through a few days to see them start to build from the new donor system. I've had a few days of a little nausea just trying to keep pills going down. And then I'd bit the inside of my mouth, got a blood blister which then activated some mouth and throat soreness from the mucasitis (an expected issued for someone in my stage). Then there is the blood sugars...low when I'm not on steroids and then back up when I'm on them (common for anyone on steroids is high blood sugars). And with the sore throat I've been drinking enough water so I've had IV fluids over night. So, all-in-all on a scal of 0-10 with 10 being all kinds of harse response to everything, I'm at about a 1 or 2. I'm doing really well as all this other stuff is really minor.
Well, Margaret is starting radiation in Portland on her spine to deal with some new tumors and then she will fly back to NYC. Her plan is to eventually move to Portland in July 2011.
Kathryn's 11th birthday celebration is this week. She is very excited for her party with friends at Oaks and then for pizza and then an overnighter at her girlfriends. Then she get the big family party on Sunday at Red Robin. Fun, Fun, Fun!
Take care all, thanks for your continued prayers and support.
Well, Margaret is starting radiation in Portland on her spine to deal with some new tumors and then she will fly back to NYC. Her plan is to eventually move to Portland in July 2011.
Kathryn's 11th birthday celebration is this week. She is very excited for her party with friends at Oaks and then for pizza and then an overnighter at her girlfriends. Then she get the big family party on Sunday at Red Robin. Fun, Fun, Fun!
Take care all, thanks for your continued prayers and support.
Monday, January 25, 2010
Day +5
Well, my system is doing the downturn on the blood counts (white is down to .20)....everything, from the old system that received the high-dose chemo, will hit 0 (between now and day 8 or so). Then the numbers start recovering, because of the new stem cells engrafting, and by day 10 we will see them start rising as they rebuild. So, I'm counting the 14 days (to the final stretch of this hospital stay - Feb 8th is the earliest projected date(but nothing is confirmed until its confirmed) that I'm ready for release. Now is, obviously too soon to be sure. Based on how well I'm doing so far, I expect my blessings to continue and I should meet that date.
Got moved to a new ROOM!!! I'm at the top of the mountain, overlooking the tram and have a full view of the city!!! I'm staring right now the center of the Ross Island Bridge...makes me feel very at home. My first "night light" view I found the blinking red light at 26th and Clinton! So wave at me as you cross the Ross Island my neighbors! (hee, hee). Any way, I've a room with a view plus it is larger than the last....enough so that I now have a 5 by 8 space for my "living room area" chair, table, and a shelf for a few food snacks and my laptop (when I'm just streaming "friends of chamber music")....hate the tv channels up here so I'm just doing music for the most part. Thank goodness for Wifi and this new laptop so I am able to connect with the outside world. I'm still adjusting to the laptop but have given in to getting a mini-mouse to enhance my ability to click and point for ease of graphics development (forms, flyers, etc.) Excited to have word 2007 with its enhanced capabilities! Over the weekend, I was very productive and caught-up on about 40 overdue notecards. I didn't get to christmas cards this year! And, of course, cleaning out email almost daily now! Today I even walked a mile...11 laps within our wing! Actually, we are encouraged to walk 3 times a day! There are those who walk routinely and those I don't see much of...we all have our own journey with this incideous disease and, as with all life, we all cope with life the best way we can! I feel blessed.
Big shout out of thanks to all of you who are doing so much for me and my children.
And for all your loving thoughts and prayers.
I wanted to update those of you who've responded to my notes about my sister, Margaret Ann Case. She has taken another blow and has found that her "not feeling well" is still her colon cancer which has now progressed into her spine. Many plans are being put in motion to get her insurance moved from NY to OR so that radiation treatment will continue here. She will be living with my Dad during her treatment and our loving family and friends here! Please add Margaret Ann to your many prayers.
Got moved to a new ROOM!!! I'm at the top of the mountain, overlooking the tram and have a full view of the city!!! I'm staring right now the center of the Ross Island Bridge...makes me feel very at home. My first "night light" view I found the blinking red light at 26th and Clinton! So wave at me as you cross the Ross Island my neighbors! (hee, hee). Any way, I've a room with a view plus it is larger than the last....enough so that I now have a 5 by 8 space for my "living room area" chair, table, and a shelf for a few food snacks and my laptop (when I'm just streaming "friends of chamber music")....hate the tv channels up here so I'm just doing music for the most part. Thank goodness for Wifi and this new laptop so I am able to connect with the outside world. I'm still adjusting to the laptop but have given in to getting a mini-mouse to enhance my ability to click and point for ease of graphics development (forms, flyers, etc.) Excited to have word 2007 with its enhanced capabilities! Over the weekend, I was very productive and caught-up on about 40 overdue notecards. I didn't get to christmas cards this year! And, of course, cleaning out email almost daily now! Today I even walked a mile...11 laps within our wing! Actually, we are encouraged to walk 3 times a day! There are those who walk routinely and those I don't see much of...we all have our own journey with this incideous disease and, as with all life, we all cope with life the best way we can! I feel blessed.
Big shout out of thanks to all of you who are doing so much for me and my children.
And for all your loving thoughts and prayers.
I wanted to update those of you who've responded to my notes about my sister, Margaret Ann Case. She has taken another blow and has found that her "not feeling well" is still her colon cancer which has now progressed into her spine. Many plans are being put in motion to get her insurance moved from NY to OR so that radiation treatment will continue here. She will be living with my Dad during her treatment and our loving family and friends here! Please add Margaret Ann to your many prayers.
Friday, January 22, 2010
Day +2
Well, all the chemo is done. The stem cells infusion was Wednesday. Been feeling a little punky from the chemo. My neck got kinked from sleeping which only added to my feeling poorly as I didn't want to move. Of course, the medicines I'ved needed were either nausea or pain/muscle relaxer which just kept me dozing in bed. Feel like I've been asleep for a week!
Seem to be getting back my stomach, eating better, rode the stationary bike today and enjoyed a glorious hot shower! No, I'm not at the spa...feeling a little claustrophobic in my room but felt up to finally sending a note out to the blog. Know this means, I'm having a good day,
Friend, Karen, has visited a couple times keeping me in clean britches and today is bringing my contour pillow from home! I'll never leave home with out it again! Not for a extended stay like this.
Heard word from the Spencer Family that Kathryn has been a wonderful girl and seems to be enjoying herself with her knew "roomie" Ruby...whispering into the dark. And that she's learning what it would be like with a sometimes annoying little brother too.
Lauren has been at home with Dad and/or Aunt Margaret. Lauren has a super 18 birthday with 18 family and friends in attendance...Scott did a great job coordinating it all! I hear from Lauren at least every other day. She wishes I were home. She wishes all would go away! Don't we all. It scarey for all of us.
Margaret extended her holiday stay. Hoping to get more done that she was but unfortunately she is going back into ER today as she's not been doing well at home. This is the craziness of cancer...a family without a history and now suddenly two sisters dealing with different types of cancer....although the feelings and emotions are the same.
Love to you all for your prayers and loving thoughts
Happy to report
Seem to be getting back my stomach, eating better, rode the stationary bike today and enjoyed a glorious hot shower! No, I'm not at the spa...feeling a little claustrophobic in my room but felt up to finally sending a note out to the blog. Know this means, I'm having a good day,
Friend, Karen, has visited a couple times keeping me in clean britches and today is bringing my contour pillow from home! I'll never leave home with out it again! Not for a extended stay like this.
Heard word from the Spencer Family that Kathryn has been a wonderful girl and seems to be enjoying herself with her knew "roomie" Ruby...whispering into the dark. And that she's learning what it would be like with a sometimes annoying little brother too.
Lauren has been at home with Dad and/or Aunt Margaret. Lauren has a super 18 birthday with 18 family and friends in attendance...Scott did a great job coordinating it all! I hear from Lauren at least every other day. She wishes I were home. She wishes all would go away! Don't we all. It scarey for all of us.
Margaret extended her holiday stay. Hoping to get more done that she was but unfortunately she is going back into ER today as she's not been doing well at home. This is the craziness of cancer...a family without a history and now suddenly two sisters dealing with different types of cancer....although the feelings and emotions are the same.
Love to you all for your prayers and loving thoughts
Happy to report
Friday, January 15, 2010
Moving to transplant
Entered hospital Tuesday (1/12) eve. Wednesday was a busy day and required lots of rest. They have me on an oral chemo. Drinking lots of fluids so I don't have to be hooked up to the IV fluids. IV chemo starts tomorrow for a couple days, and then a day of rest before the stem cell infusion on the 20th. Then they'll be watching for my blood counts to drop before the donor system takes hold and starts bringing the counts back up....that's when the close monitoring really begins. They expect I'll be able to head home the week of February 8th as long as all goes smooth.
Wearing my prayer shawl given to me by dear friends Judy & Don.
Till next time.
Wearing my prayer shawl given to me by dear friends Judy & Don.
Till next time.
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