This is perhaps the hardest entry I have ever written. The bottom line is I can't really explain why I didn't blog for so long. My silence also included a complete drop out from all communications. Phone calls, email, Facebook, letters. Literally everything. Pretty much if you weren't literally with me, I was succeeding in disappearing.
My best explanation is that NOTHING went or turned out as I planned. I had intended to blog all the way through transplant and the Seattle Cancer Care Alliance experience. I do have lots of pictures, stories, and thoughts to share. I just haven't figured out HOW. Each day I would be sure the next day would be better and then I would write. I felt guilty every day for not writing. Then I thought I would get back on track once I got home. Again, nothing has gone as I expected it would.
My second explanation is that I that I lost my "groove". I didn't feel the creative urge to write. It just hasn't been there. It has been a little scary feeling that way. It seems I always have something to say. I did have lots to say, just not the skills to say it.
I also wanted to write with a positive and upbeat spirit. Yet that spirit remains elusive. I couldn't handle writing about the challenges rather than reporting successes. I feel this weird responsibility to end the transplant story with a smile, with good news, with a conclusion. Without the prayers, emotional support, and financial support from all of you, I wouldn't have been able to have the transplant in the first place. I want to give back to you only the good. Does this make sense?
I am also ashamed that I am unable just to celebrate the gift of life I received from a total stranger. I feel ashamed that I can't just be grateful, not mired in all the other crap.
I also have not been well most of the time. I don't know that anyone really wants to read about that.
Ultimately I haven't known how to explain to others what I can't understand myself. Again, it feels like if a person literally hasn't been there with me that I have no way to describe it. This transplant journey has kicked my ass. Our family has been turned upside down and shaken. The words elude me to adequately describe it all. So I guess with not realizing it, at least at first, I just hid away. And waited for some magic to come. It's still not here but I am giving it a shot anyways.
I end with a sincere apology to those who I have offended by not communicating sooner. The fact that it has totally and indescribably overwhelmed me is not a fair outcome for those of you who have been there for me. I owed you better than that. I pledged to you that I would try to take you with me on my journey, and I failed to do that. Again, I will try to honor my commitment to write, including going back in time and sharing the best I can. I've got some pretty amazing pictures to post as well.
I am sorry.
Now that I have stumbled all over myself and then offered an inept apology, I am logging off to get sick. This may take awhile or not. I would also benefir from some sleep, my goal if I feel a little better. I may be back in a few, or maybe tomorrow, or maybe a week from now. Until then......
Friday, July 31, 2009
Cancer Is a Small World After All, Part I
I never really knew what a small world my cancer world was. There was me in the middle, of course. (Egocentric, no?) Then there were my family members, both biological and through marriage, who have traveled their own cancer journeys, some winning and some who had succumbed from the disease. Naturally, there were others, including friends, acquaintances, and even strangers, whose experiences have affected me. Have you ever stopped and really thought about YOUR cancer world?
I spent last week in the hospital, on 7-South, the Oncology Ward. While I was walking the floor, a gurney carrying a woman downstairs, presumably for a test or procedure, went past me. In the flash that she went by, I thought I knew her. Then some of her family rounded the corner, accompanying her on the way downstairs. I definitely knew them. One of them stopped as she recognized me. We both kind of mumbled something to the effect of "what are you doing here?. Who knew that one can actually run in to people you know on the cancer floor?!
A few days later when I was feeling a bit better, I asked my nurse if the woman was still in the hospital and if so, would she ask her nurse if I could come visit. What is the etiquette on running into someone you know who is also a patient? This was definitely not covered in the Emily Post books I have read.
The woman told her nurse to tell my nurse to tell me that yes, I could come visit. So after I squirreled up the courage, I walked three doors down to see a friend who I didn't even know had cancer. (A very embarrassing side effect of my being a hermit and completely out-of-touch with the "outside" world.) Of course, true to herself, she was beautiful despite her battle, and even had the nerve to have eye make-up on! My IV pole with attached machines and I got seated and situated. It was now time to look her in the eye and figure out what to say. Naturally, cutting right to the bottom line, I ask, "What the Hell are you doing here?".
This super cool, super hip, successful business woman, family matriarch, who I have always admired, answered my question in her typical style. The ice broken, we had a pretty long visit for two people whose bodies are not cooperating and who frequently forget what we are talking about or what has already been said. And we had some laughs, too. Fancy seeing you here.....
My friend prefered she remain anonymous. And I am keeping the details of our conversation private. But some of you may know who she is anyways. I can confidently report that she's kicking ass as usual. And to you, my dear, if your read this, thank you for sharing and for listening. And I am here for you any time. And I apologize for not being there sooner.
One thing that really made an impression, however, was how she expressed her joy, her dreams, and her hopes. Her family has been through some pretty amazing stuff in the past year. I am so proud for her that she is not defining herself by her disease. It is clearly just a part of the big picture. My hat is off.
We also talked about another woman we both know, a former colleague of mine, Bernadette. I did not know her well, but I had truly enjoyed the homemade soup and bread she had brought me during my battle. I has also learned that she frequently inquired about me with various friends. While she was reaching out and giving to me, she herself was battling cancer and unfortunately losing the fight.
Her memorial service was held the day I was admitted to the hospital. She had begun hospice just three days before she died. I have deep regret that I was not there for her or even able to pray for her. Thank you, Bernadette, for your beautiful soul that cared about me, despite hardly knowing me, even as your cancer was ravaging your body. May God Bless you always.
I spent last week in the hospital, on 7-South, the Oncology Ward. While I was walking the floor, a gurney carrying a woman downstairs, presumably for a test or procedure, went past me. In the flash that she went by, I thought I knew her. Then some of her family rounded the corner, accompanying her on the way downstairs. I definitely knew them. One of them stopped as she recognized me. We both kind of mumbled something to the effect of "what are you doing here?. Who knew that one can actually run in to people you know on the cancer floor?!
A few days later when I was feeling a bit better, I asked my nurse if the woman was still in the hospital and if so, would she ask her nurse if I could come visit. What is the etiquette on running into someone you know who is also a patient? This was definitely not covered in the Emily Post books I have read.
The woman told her nurse to tell my nurse to tell me that yes, I could come visit. So after I squirreled up the courage, I walked three doors down to see a friend who I didn't even know had cancer. (A very embarrassing side effect of my being a hermit and completely out-of-touch with the "outside" world.) Of course, true to herself, she was beautiful despite her battle, and even had the nerve to have eye make-up on! My IV pole with attached machines and I got seated and situated. It was now time to look her in the eye and figure out what to say. Naturally, cutting right to the bottom line, I ask, "What the Hell are you doing here?".
This super cool, super hip, successful business woman, family matriarch, who I have always admired, answered my question in her typical style. The ice broken, we had a pretty long visit for two people whose bodies are not cooperating and who frequently forget what we are talking about or what has already been said. And we had some laughs, too. Fancy seeing you here.....
My friend prefered she remain anonymous. And I am keeping the details of our conversation private. But some of you may know who she is anyways. I can confidently report that she's kicking ass as usual. And to you, my dear, if your read this, thank you for sharing and for listening. And I am here for you any time. And I apologize for not being there sooner.
One thing that really made an impression, however, was how she expressed her joy, her dreams, and her hopes. Her family has been through some pretty amazing stuff in the past year. I am so proud for her that she is not defining herself by her disease. It is clearly just a part of the big picture. My hat is off.
We also talked about another woman we both know, a former colleague of mine, Bernadette. I did not know her well, but I had truly enjoyed the homemade soup and bread she had brought me during my battle. I has also learned that she frequently inquired about me with various friends. While she was reaching out and giving to me, she herself was battling cancer and unfortunately losing the fight.
Her memorial service was held the day I was admitted to the hospital. She had begun hospice just three days before she died. I have deep regret that I was not there for her or even able to pray for her. Thank you, Bernadette, for your beautiful soul that cared about me, despite hardly knowing me, even as your cancer was ravaging your body. May God Bless you always.
Before and After Cancer Came to Town
Thought I'd take a trip down memory lane, back to the defining "Before" and "After" moments of when cancer came to town. I feel a need to tell the story in its entirety. I have often referenced things simply as facts but never really offered them as full experiences. Please bear with me as I write......just trying to get it all out......
Breast cancer has been rather rampant in my family history. I've learned that this was my first "cancer identity", beginning with concern and screening. Those that went before me, and vigilant screening, perhaps saved my life. It was this perspective that allowed for my early detection. It also caused me to really think about what I would do if I were to be diagnosed with breast cancer.
I remember the day when the phone rang and the caller id indicated it was my surgeon. Just two days before I had undergone removal of a suspicious lump. When your surgeon calls on a Saturday, picking up the phone is the beginning of your "new" life. Craig and the boys were visiting our friends Keri, Gordy, and their daughter Jessi for the afternoon, so I was home alone on the mend. I sat on my bed to answer the phone. That was definitely a before and after moment. I spent the new few hours dealing, accepting, and checking my preparedness for what would come.
When my boys got home, I told Craig we needed to talk, so we went to our room, shut the door, and I prayed for a few minutes before milk was needed or somebody hit someone or looked at their brother funny. How quickly can you tell your husband that you have breast cancer? Pretty damn quick. How long can this new diagnosis make time stand still? About as long before a little guy knocks on the door. Suddenly life goes on.
I saw the surgeon Monday morning, but my treatment decisions were already made. I had already had a number of lumps removed, all on the right side, where the cancer had been found. My poor little breast was getting smaller by the year. It simply was time, for me, to say enough is enough, and move on. Take 'em! Why screw around with this? I had been blessed with a wonderful husband, had born and breastfed two beautiful children, my family was complete. Never having had an identity defined by my breasts, and actually perhaps the opposite, I was okay with my originals going. Why not trade up?
When I was off blood-thinners for the required number of days, I underwent a double mastectomy. I remember looking at my breasts while I was in pre-op and saying goodbye. I remember showing them to Craig and my best friend Jenny, both there to support me, as ALWAYS, and telling them to say goodbye. They didn't appreciate the moment as I did.....
I woke up without breasts. It was now "After" for sure.
Someday I will write about the recovery from the surgery and my boobless life. But enough for now.
In closing, I have been fortunate to have some of my friends and family ask frank and sometimes difficult questions, as sometimes, some people, would like to learn more and have felt comfortable enough to ask. I am 100% open to answering ANY question, regardless of how personal it may seem. I genuinely think this is part of my purpose: to talk and communicate the very real journey I've had. People will either want to know or not. But I am committed to getting the personal side of cancer out there. I certainly am not a clinical expert and frankly, it seems that most information out there is dry and technical. PLEASE tell me what you are curious about. Or skip the blog entries. Whatever makes you comfortable.
Breast cancer has been rather rampant in my family history. I've learned that this was my first "cancer identity", beginning with concern and screening. Those that went before me, and vigilant screening, perhaps saved my life. It was this perspective that allowed for my early detection. It also caused me to really think about what I would do if I were to be diagnosed with breast cancer.
I remember the day when the phone rang and the caller id indicated it was my surgeon. Just two days before I had undergone removal of a suspicious lump. When your surgeon calls on a Saturday, picking up the phone is the beginning of your "new" life. Craig and the boys were visiting our friends Keri, Gordy, and their daughter Jessi for the afternoon, so I was home alone on the mend. I sat on my bed to answer the phone. That was definitely a before and after moment. I spent the new few hours dealing, accepting, and checking my preparedness for what would come.
When my boys got home, I told Craig we needed to talk, so we went to our room, shut the door, and I prayed for a few minutes before milk was needed or somebody hit someone or looked at their brother funny. How quickly can you tell your husband that you have breast cancer? Pretty damn quick. How long can this new diagnosis make time stand still? About as long before a little guy knocks on the door. Suddenly life goes on.
I saw the surgeon Monday morning, but my treatment decisions were already made. I had already had a number of lumps removed, all on the right side, where the cancer had been found. My poor little breast was getting smaller by the year. It simply was time, for me, to say enough is enough, and move on. Take 'em! Why screw around with this? I had been blessed with a wonderful husband, had born and breastfed two beautiful children, my family was complete. Never having had an identity defined by my breasts, and actually perhaps the opposite, I was okay with my originals going. Why not trade up?
When I was off blood-thinners for the required number of days, I underwent a double mastectomy. I remember looking at my breasts while I was in pre-op and saying goodbye. I remember showing them to Craig and my best friend Jenny, both there to support me, as ALWAYS, and telling them to say goodbye. They didn't appreciate the moment as I did.....
I woke up without breasts. It was now "After" for sure.
Someday I will write about the recovery from the surgery and my boobless life. But enough for now.
In closing, I have been fortunate to have some of my friends and family ask frank and sometimes difficult questions, as sometimes, some people, would like to learn more and have felt comfortable enough to ask. I am 100% open to answering ANY question, regardless of how personal it may seem. I genuinely think this is part of my purpose: to talk and communicate the very real journey I've had. People will either want to know or not. But I am committed to getting the personal side of cancer out there. I certainly am not a clinical expert and frankly, it seems that most information out there is dry and technical. PLEASE tell me what you are curious about. Or skip the blog entries. Whatever makes you comfortable.
Thursday, July 16, 2009
How Sally Got Her Groove Back
Okay, so it's not back yet. And I am still completely unsure how to get it back. Or if it is even possible to get it back. I'd say it's a work in progress.
Nothing about my life has been what I "expected" since the end of February. You may have noticed that this time period is also when I stopped writing and stopped communicating. I want to tell you, my friends, my family, and all of you who have followed my journey and willed me through my transplant, that I am sorry I have not kept you updated and not responded to your efforts at keeping/getting in touch. I have intended to write on this blog every day. I just haven't known how. I am not who I used to be but haven't finished figuring out who I am. Or who I am going to be. So I humbly ask for your patience and tolerance while I go through this process.
Anyways.
I am determined to write regularly, with some current news mixed in with a trip down transplant lane. I literally have so much inisde to share with you all that I don't know where and how to start. Ignore my new posts and emails if you like. I do worry that I might exhaust you if the flood gates really open. But I NEED to tell you, as I can, about where I have been and who I am getting back. I genuinely feel that I have some things to say that need to be heard. And I also genuinely feel that until I get it all out, I can't move on.
I am so nervous that I am shaking. Learning to open up again will be difficult for me. If you can, come along for the ride. And as always, welcome to Sally Land.
Nothing about my life has been what I "expected" since the end of February. You may have noticed that this time period is also when I stopped writing and stopped communicating. I want to tell you, my friends, my family, and all of you who have followed my journey and willed me through my transplant, that I am sorry I have not kept you updated and not responded to your efforts at keeping/getting in touch. I have intended to write on this blog every day. I just haven't known how. I am not who I used to be but haven't finished figuring out who I am. Or who I am going to be. So I humbly ask for your patience and tolerance while I go through this process.
Anyways.
I am determined to write regularly, with some current news mixed in with a trip down transplant lane. I literally have so much inisde to share with you all that I don't know where and how to start. Ignore my new posts and emails if you like. I do worry that I might exhaust you if the flood gates really open. But I NEED to tell you, as I can, about where I have been and who I am getting back. I genuinely feel that I have some things to say that need to be heard. And I also genuinely feel that until I get it all out, I can't move on.
I am so nervous that I am shaking. Learning to open up again will be difficult for me. If you can, come along for the ride. And as always, welcome to Sally Land.
Thursday, June 18, 2009
Home
Hello,
Sally has wanted to update the blog but feeling tired. everybody is fine and just trying to adjust to a new lifestyle. She is doing good and will update soon.
craig
Sally has wanted to update the blog but feeling tired. everybody is fine and just trying to adjust to a new lifestyle. She is doing good and will update soon.
craig
Friday, June 5, 2009
Light at end of the tunnel
Hello All,
The boys have no idea that in a week, their mommy will be home!
Well the end is near. No matter what I say, don't tell the boys, we want to surprise them.
The last week has been interesting. Without us even knowing, Sally has been doing discharge tests, exams, and meetings. Don't ask how, but we never knew till yesterday. To sum it all up, the bone marrow results from last week are completely negative, which is good. That means there are no traces of the leukemia in her bone marrow and is considered in remission. They (SCCA) tests confirm that she is making male cells. Weird but cool.
During the meetings etc, the bloodwork shows no damage to the kidneys or liver etc. Blood counts look great and no signs of GVHD except for a small bit in the esophagus.
She is fighting a cold right now that is lingering and kicking her butt. She forgets she has new bone marrow, white blood cells, and an immune system of a 3 month old. Like most 3 months olds, they get sick alot....which should be fun to see her get frustrated over that. She is taking antibiotics and resting.
The stomach issues have drastically decreased since stopping the pain meds they had her junked up on. All narcotics slow gastric motility, (makes stomach empty slowly) and cause constipation---which in turns slows down the stomach. so eating a meal and letting it sit in the stomach for several hours was causing her pain.
Yesterday we found out her discharge date is June 10th. So again, we want to surprise the boys either on Thursday or Friday.
It has been a long, challenging, frustrating, interesting, and yet joyful journey. Those who have helped be a cargiver for Sally, visited Sally and/or I, watched the boys, picked up the boys for school and activities, allowed me to vent, sent cards, picked and dropped me off at airport, watched the house, fed the pets, mowed the yard, helped upgrade the house, allowed me time off work, let us borrow things for the apartment, supported us in any fashion needed, donated money for the journey, and gave love and prayers to our family, I want to say THANK YOU!. It was difficult to leave behind aspects of our lives that we love and need. But without all of you it could not have been done. THANK YOU again.
It will still take 6-9 months to get her full immune system and energy back to normal, but will take it day by day
Craig
The boys have no idea that in a week, their mommy will be home!
Well the end is near. No matter what I say, don't tell the boys, we want to surprise them.
The last week has been interesting. Without us even knowing, Sally has been doing discharge tests, exams, and meetings. Don't ask how, but we never knew till yesterday. To sum it all up, the bone marrow results from last week are completely negative, which is good. That means there are no traces of the leukemia in her bone marrow and is considered in remission. They (SCCA) tests confirm that she is making male cells. Weird but cool.
During the meetings etc, the bloodwork shows no damage to the kidneys or liver etc. Blood counts look great and no signs of GVHD except for a small bit in the esophagus.
She is fighting a cold right now that is lingering and kicking her butt. She forgets she has new bone marrow, white blood cells, and an immune system of a 3 month old. Like most 3 months olds, they get sick alot....which should be fun to see her get frustrated over that. She is taking antibiotics and resting.
The stomach issues have drastically decreased since stopping the pain meds they had her junked up on. All narcotics slow gastric motility, (makes stomach empty slowly) and cause constipation---which in turns slows down the stomach. so eating a meal and letting it sit in the stomach for several hours was causing her pain.
Yesterday we found out her discharge date is June 10th. So again, we want to surprise the boys either on Thursday or Friday.
It has been a long, challenging, frustrating, interesting, and yet joyful journey. Those who have helped be a cargiver for Sally, visited Sally and/or I, watched the boys, picked up the boys for school and activities, allowed me to vent, sent cards, picked and dropped me off at airport, watched the house, fed the pets, mowed the yard, helped upgrade the house, allowed me time off work, let us borrow things for the apartment, supported us in any fashion needed, donated money for the journey, and gave love and prayers to our family, I want to say THANK YOU!. It was difficult to leave behind aspects of our lives that we love and need. But without all of you it could not have been done. THANK YOU again.
It will still take 6-9 months to get her full immune system and energy back to normal, but will take it day by day
Craig
Tuesday, June 2, 2009
Nothing too new,.
Hello,
Latest update is boring but good. Sally is still having some stomach issues with nausea. Slowly getting better. The doctors are trying a new medicine to help with stomach. She is still getting up at night with pain and nausea, but again is slowly getting better. she is starting her exit visits and tests. Everything is looking great in that regards. Go home date is still the weekend of the 13th of June.
I think she will improve greatly once out of the apartment and back home. Nothing helps more than being at home.
We are having busy days with lack of sleep and tests all day long. Sorry for the delay in updates. Keri and Jenny came over for the weekend and all 3 had a good time. I went home for the weekend and caught up on a few things and yes, snuck out fishing. I got more mosquito bites than fish bites.
Boys are doing great. John Paul has lost both of his front teeth after I left. So not sure if Misty is beating the kids or not. Just joking.
Will update in a few days after the final bone marrow results come back. Take care
Craig
Monday, May 25, 2009
Thank You
Also wanted to thank Mrs. Thielman for bringing the boys to Seattle and back for the weekend. I forgot to mention that in the last blog. We greatly appreciate it.
Boys in Town
Hello,
The boys came over to Seattle for the long weekend and again lived the high-life. We all went to Woodland Park Zoo which has great animals and set up like an adventure for kids. John Paul was in charge of the map reading and did good. Of all the animals at the zoo (around 400), the only one they wanted to see was the snow leapord which was hidden. We all looked and scanned with no luck.
On Sunday, we went to the musuem of flight. It was cool. Planes from all the wars, missles and even Air Force One.
Sally is doing well. Still having issues with her stomach and nausea. The doctors will tgy a new med for it tomm. She will be doing some "exit" tests getting ready for discharge. Hopefully the nausea will come down and all will be good.
I believe her spirits were lifted with the boys here even if it was for a few days. she is tired from not sleeping much because of the nausea.
Discharge date is still around june 13th-ish.
Saturday, May 16, 2009
I'm back!
Hello everyone,
After reading the updates from Sally and Casey ( who have degrees in lit and language), I won't even try to keep up with them. I will be sounding silly and even stupid compared to them.
I arrived back on Wed and assumed the powers of caregiving. Thanks You casey for all your help. Seattle is still the same with traffic, people and just feeling like an ant in an anthill.
Sally is doing good. Everything is going well as expected except for nausea. She had a scope done 2 days ago and still waiting for results. They (the doctors) think its the GVHD in her stomach that is causing the pain and nausea. Mentally she is alittle beat up wishing she was better and being stuck in an apartment most of the time. Being type A, she tries to get some piles done which only causes more piles So i told her her priorities are to only sleep, eat, and work on self. I will do the rest. I promised her that we would go out daily to do something other than clinic to help with spirits.
Yesterday, i sneeked a peek at her counts and bloodwork and all were excellent.
I will keep the blog updated. she is on day 70 post transplant and still have target date of june 13th to get out of here.
craig
After reading the updates from Sally and Casey ( who have degrees in lit and language), I won't even try to keep up with them. I will be sounding silly and even stupid compared to them.
I arrived back on Wed and assumed the powers of caregiving. Thanks You casey for all your help. Seattle is still the same with traffic, people and just feeling like an ant in an anthill.
Sally is doing good. Everything is going well as expected except for nausea. She had a scope done 2 days ago and still waiting for results. They (the doctors) think its the GVHD in her stomach that is causing the pain and nausea. Mentally she is alittle beat up wishing she was better and being stuck in an apartment most of the time. Being type A, she tries to get some piles done which only causes more piles So i told her her priorities are to only sleep, eat, and work on self. I will do the rest. I promised her that we would go out daily to do something other than clinic to help with spirits.
Yesterday, i sneeked a peek at her counts and bloodwork and all were excellent.
I will keep the blog updated. she is on day 70 post transplant and still have target date of june 13th to get out of here.
craig
Monday, May 4, 2009
a day in the life . . .
DICTATION:
Now, a mere 96 hours later, with my unwelcome assistance and from the same location we last reported (this is Casey, Sally's sister-in-law and "caregiver extraordinaire" - I'm just writing what she tells me) Sally is attempting to be directly involved in communications with the "outside world" for the first time in a long time. Knowing Sally, there are both pros and cons to this. What she is most interested in me writing is her gratitude and love for your kindnesses, love, and prayers, all of which seem truly never-ending. Sally doesn't feel that there is any way these 58 post-transplant days would have been bearable without your support, although she has quite literally no idea how to express to you how much she desires to speak with each of you and hear about YOUR lives and the things she is missing, and the stories that you have to tell.
"In an undefinable way, each day is literally taking all of my energy and focus just to be me. I hope to one day be able to explain that better, because I do feel that it makes me seem uninterested in or ungrateful for the way you have all kept me in your thoughts. What you must know is that it requires every bit of my physical strength to focus on getting through another twenty-four hours, or another six hours, or another one hour . . . my days and nights are schedules: medications, i.v. bags, clinic appointments, a pipe-dream grocery run - and then finding out what new emergency has emerged to trump all of that careful planning. It makes one have a new appreciation for the solid foundations on which a relationship must be built, to make up for times like these when nothing can be done to maintain it. I wonder about the lives you are all leading, yet I am unable, at this point in my recovery, to dedicate the time and energy such unique and wonderful people deserve, and I trust with all my heart that you will understand this and forgive my lack of communication."
So, back to logistics (still dictating): still in the hospital, and anticipating at least a few more days. As time goes on, we are learning more and more about all the side effects a bone marrow transplant can cause, from big daddy GVHD to CMV to all the . New test results should be in tomorrow, which will determine which procedure, medication, or protocol comes next. This seems to be fairly par for the course in post-transplant land.
The shining glory of these recent weeks was the visit from my guys - Craig and the boys - this past weekend. While not the visit none of us had planned - surprise, Craig! You're spending the weekend in Seattle! - let's just say that having small children visit a patient in isolation is a complicated affair. They do not make child-size masks, gloves, or gowns. We did not take photos.
We had planned a weekend at the home-away-from-home, with visits to the park, pancakes on Sunday morning, and lots of mommy and son time. Craig expected a break and some time to fish. Even though this hospital visit threw all those plans to the wind, my boys packed up and headed West, and made the best of the situation. We managed to spend some quality - if brief - time together, and it was a boost to us all to share even that, though the ache of being separated from one's children is never really relieved. I hope some day to be able to find the words to describe this hole in my heart, which, like some of the things I mentioned earlier, is far too deep and painful to be expressed with any words I can think of now.
I think that the Mariners' game which Craig and the boys attended thanks to tickets which were donated to the Pete Gross House - and which featured the boys' first-ever live home run - may have helped make up for missing out on fishing . . . . . it was also the first time this half of the family had been able to all get together outside of Spokane - normally we (Angie, Jim, Casey, Belinda, Craig, Sally, and boys) all meet up at 6012 S. Smith for Christmas and July 4th. As a thank-you for the act of love which was putting her life and work on hold in Mexico for over a month to be part of my team Sally flew in my mother (now it's Casey talking), which means this "caregiver extraordinaire" (again, I'm just writing what she tells me) got to spend some quality time with HER mommy, too. Grandma and grandkids, aunts and nephews, brothers and sisters, mothers and children, husbands and wives . . . it was a weekend of reunions which were all too short, but not the less welcome for it.
Much love,
Sally
Now, a mere 96 hours later, with my unwelcome assistance and from the same location we last reported (this is Casey, Sally's sister-in-law and "caregiver extraordinaire" - I'm just writing what she tells me) Sally is attempting to be directly involved in communications with the "outside world" for the first time in a long time. Knowing Sally, there are both pros and cons to this. What she is most interested in me writing is her gratitude and love for your kindnesses, love, and prayers, all of which seem truly never-ending. Sally doesn't feel that there is any way these 58 post-transplant days would have been bearable without your support, although she has quite literally no idea how to express to you how much she desires to speak with each of you and hear about YOUR lives and the things she is missing, and the stories that you have to tell.
"In an undefinable way, each day is literally taking all of my energy and focus just to be me. I hope to one day be able to explain that better, because I do feel that it makes me seem uninterested in or ungrateful for the way you have all kept me in your thoughts. What you must know is that it requires every bit of my physical strength to focus on getting through another twenty-four hours, or another six hours, or another one hour . . . my days and nights are schedules: medications, i.v. bags, clinic appointments, a pipe-dream grocery run - and then finding out what new emergency has emerged to trump all of that careful planning. It makes one have a new appreciation for the solid foundations on which a relationship must be built, to make up for times like these when nothing can be done to maintain it. I wonder about the lives you are all leading, yet I am unable, at this point in my recovery, to dedicate the time and energy such unique and wonderful people deserve, and I trust with all my heart that you will understand this and forgive my lack of communication."
So, back to logistics (still dictating): still in the hospital, and anticipating at least a few more days. As time goes on, we are learning more and more about all the side effects a bone marrow transplant can cause, from big daddy GVHD to CMV to all the . New test results should be in tomorrow, which will determine which procedure, medication, or protocol comes next. This seems to be fairly par for the course in post-transplant land.
The shining glory of these recent weeks was the visit from my guys - Craig and the boys - this past weekend. While not the visit none of us had planned - surprise, Craig! You're spending the weekend in Seattle! - let's just say that having small children visit a patient in isolation is a complicated affair. They do not make child-size masks, gloves, or gowns. We did not take photos.
We had planned a weekend at the home-away-from-home, with visits to the park, pancakes on Sunday morning, and lots of mommy and son time. Craig expected a break and some time to fish. Even though this hospital visit threw all those plans to the wind, my boys packed up and headed West, and made the best of the situation. We managed to spend some quality - if brief - time together, and it was a boost to us all to share even that, though the ache of being separated from one's children is never really relieved. I hope some day to be able to find the words to describe this hole in my heart, which, like some of the things I mentioned earlier, is far too deep and painful to be expressed with any words I can think of now.
I think that the Mariners' game which Craig and the boys attended thanks to tickets which were donated to the Pete Gross House - and which featured the boys' first-ever live home run - may have helped make up for missing out on fishing . . . . . it was also the first time this half of the family had been able to all get together outside of Spokane - normally we (Angie, Jim, Casey, Belinda, Craig, Sally, and boys) all meet up at 6012 S. Smith for Christmas and July 4th. As a thank-you for the act of love which was putting her life and work on hold in Mexico for over a month to be part of my team Sally flew in my mother (now it's Casey talking), which means this "caregiver extraordinaire" (again, I'm just writing what she tells me) got to spend some quality time with HER mommy, too. Grandma and grandkids, aunts and nephews, brothers and sisters, mothers and children, husbands and wives . . . it was a weekend of reunions which were all too short, but not the less welcome for it.
Much love,
Sally
Thursday, April 30, 2009
GVHD rears its ugly head
This is Casey, reporting (once again), from the hospital. Last week we got off with a slap on the wrist, but the situation really did not improve. The nausea and headache were kept between "barely tolerable" and "tolerably horrible" and, well, after another four days or so, Sally began having some issues with vomiting. The first instance was just twice in a night (Tuesday night), but the following afternoon became intense and we brought her to the hospital to receive medication through her central line (Wednesday night). Hoping she was stabilized we brought her home, but when I went in to wake her this morning she said the vomiting had returned. So we were guests at the clinic all day, but we realized and agreed - nurse, doctor, myself, and Sally - that she was not improving and that she needed to be hospitalized.
So, we've been here for a few hours and she seems to be resting semi-comfortably. What we are hoping is that the GVHD (which is the principal cause of the nausea and vomiting) can be quickly treated using Prednizone (sp.?), an oral steroid which Sally had originally resisted taking due to side effects, but is now resigned to as her best hope to feel as better as possible, as soon as possible. However, we first need to get her nausea and intense head pain under control, and that, for the moment, can only be done through her central line - hence, the hospital. The doctor says he believes she will need 2 to 3 nights in order to feel well enough to go home and continue treatment orally.
I will try to update you in a few days or so. For the moment (as has been the case for the past several days), she is sleeping/dozing A LOT and is unlikely to be able to take phone calls. Thank you to those of you who have sent postcards, cards, letters, and gifts - your kind thoughts and words are very much appreciated.
So, we've been here for a few hours and she seems to be resting semi-comfortably. What we are hoping is that the GVHD (which is the principal cause of the nausea and vomiting) can be quickly treated using Prednizone (sp.?), an oral steroid which Sally had originally resisted taking due to side effects, but is now resigned to as her best hope to feel as better as possible, as soon as possible. However, we first need to get her nausea and intense head pain under control, and that, for the moment, can only be done through her central line - hence, the hospital. The doctor says he believes she will need 2 to 3 nights in order to feel well enough to go home and continue treatment orally.
I will try to update you in a few days or so. For the moment (as has been the case for the past several days), she is sleeping/dozing A LOT and is unlikely to be able to take phone calls. Thank you to those of you who have sent postcards, cards, letters, and gifts - your kind thoughts and words are very much appreciated.
Thursday, April 23, 2009
briefest of updates
Hi, I'm Casey, Craig's sister, and for the moment, Sally's caregiver. I got here April 12th - so I owe everyone a big apology for not posting anything sooner, and for only posting a bit today. In our effort to wait until one issue was resolved, another came along, and before we knew it, ten days had passed. I hope to give a very, VERY brief summary of what has happened, at least medically speaking.
Sally was in the hospital last week, as Craig mentioned, for what turned out to be GVHD. She was released after three days with a "light" medication. She had two great days followed by three crummy days (crummy = nausea, headache, fatigue, no appetite). To top it off, today (also another crummy day for the above reasons) she woke up with what appears to be a cold. We took chest x-rays and it looks like she has a possible infection in the lungs. I am blogging from the hospital right now, as she had some increased chest pain and they wanted to get another look at her lungs. We are hoping to be let off with the antibiotics and be able to return home, at least until tomorrow, when they will do more extensive testing.
As you can imagine, due to the extreme fatigue, Sally has been sleeping a lot. We have literally not been able to respond to all phone calls, cards, and packages YET, but are hoping that once the GVHD is under control and this cold is treated, that we will be able to give each of you a personal response. In the meantime, Sally is enormously grateful for your kind words and support.
I hope to be able to update you again soon, or else Craig will. At least when I post, you know there WON'T be spelling errors! ;)
Sally was in the hospital last week, as Craig mentioned, for what turned out to be GVHD. She was released after three days with a "light" medication. She had two great days followed by three crummy days (crummy = nausea, headache, fatigue, no appetite). To top it off, today (also another crummy day for the above reasons) she woke up with what appears to be a cold. We took chest x-rays and it looks like she has a possible infection in the lungs. I am blogging from the hospital right now, as she had some increased chest pain and they wanted to get another look at her lungs. We are hoping to be let off with the antibiotics and be able to return home, at least until tomorrow, when they will do more extensive testing.
As you can imagine, due to the extreme fatigue, Sally has been sleeping a lot. We have literally not been able to respond to all phone calls, cards, and packages YET, but are hoping that once the GVHD is under control and this cold is treated, that we will be able to give each of you a personal response. In the meantime, Sally is enormously grateful for your kind words and support.
I hope to be able to update you again soon, or else Craig will. At least when I post, you know there WON'T be spelling errors! ;)
Friday, April 17, 2009
Fri the 17th.
Hello again,
Latest news is Sally is being discharged from hospital later this afternoon. She did get a scope done which showed some inflammation and are going to put her on meds to calm it down. She is feeling alot better today and in good spirits.
Latest news is Sally is being discharged from hospital later this afternoon. She did get a scope done which showed some inflammation and are going to put her on meds to calm it down. She is feeling alot better today and in good spirits.
Thursday, April 16, 2009
Latest update
Hello,
Sorry again for falling back a few days to update the blog. Thank you to everyone who has helped me back in spokane. Trying to catch up, maintain and get ahead with everything has been overwhelming.
Talked with my sister Casey, who is in Seattle playing caregiver till mid May this am. Sally is back in the hospital with alot of nausea and sickness. She is otherwise good, but when you cant take your meds, they put you back in to give them i.v. Sally will be getting a scope later today to evaluate for GVHD. Graft vs host disease. it is common and place her on steroids if that is what is causing the problems. GVHD is common for the first 3-4 months after translplant.
Sally does have a long history of nausea with meds. She is taking alot of them including pain meds etc which only makes it worst.
I expect to be getting a phone call later today and will post a quick upate later tonight.
And for those of you who have picked on me for my mispelled words, REVENGE is best when served cold.
Craig
Sorry again for falling back a few days to update the blog. Thank you to everyone who has helped me back in spokane. Trying to catch up, maintain and get ahead with everything has been overwhelming.
Talked with my sister Casey, who is in Seattle playing caregiver till mid May this am. Sally is back in the hospital with alot of nausea and sickness. She is otherwise good, but when you cant take your meds, they put you back in to give them i.v. Sally will be getting a scope later today to evaluate for GVHD. Graft vs host disease. it is common and place her on steroids if that is what is causing the problems. GVHD is common for the first 3-4 months after translplant.
Sally does have a long history of nausea with meds. She is taking alot of them including pain meds etc which only makes it worst.
I expect to be getting a phone call later today and will post a quick upate later tonight.
And for those of you who have picked on me for my mispelled words, REVENGE is best when served cold.
Craig
Friday, April 10, 2009
nothing new
Hello,
Sorry for the delay in keeping up with the blog. Just got off the phone with her care taker and she is doing great. sleeping has been the key last few days. The headache is better and she saw the doctor a few days ago and thinks everything is going great.
Sally goes for bone marrow biopsy to look at the new cells in the marrow and make sure they are taking up residence and kicking the remaining old cells out. Good thing the schedule those on fridays so she can rest over the weekend. Those mothers hurt.
I'm back in Spokane for a few weeks, so the relay of information has somewhat of a delay.
The boys and I are doing great. We just got done cleaning up the house and getting settled again. Has taken us five days to accomplish catching up. Sally is good at that part, not I.
Sorry for the delay in keeping up with the blog. Just got off the phone with her care taker and she is doing great. sleeping has been the key last few days. The headache is better and she saw the doctor a few days ago and thinks everything is going great.
Sally goes for bone marrow biopsy to look at the new cells in the marrow and make sure they are taking up residence and kicking the remaining old cells out. Good thing the schedule those on fridays so she can rest over the weekend. Those mothers hurt.
I'm back in Spokane for a few weeks, so the relay of information has somewhat of a delay.
The boys and I are doing great. We just got done cleaning up the house and getting settled again. Has taken us five days to accomplish catching up. Sally is good at that part, not I.
Saturday, April 4, 2009
Headache
Hello
Sorry for the delay on the post. It has been crazy with the boys here. Sally was admitted back to the hospital on Fri morning for a headache. Of course they did a CT and all the tests and everything is negative. They said its common with a transplant. They have her drugged up and waiting for it to stop. Of course being on 50 meds always bring into question if it could be a side effect. Her nausea is minimal and eating. Otherwise everything is going great except the headache.
The boys had a blast. Toured Safeco field, home of the Seattle Mariners. Went on ferry ride and multiple other things. I will post some more when i get home here in a few days.
Sorry for the delay on the post. It has been crazy with the boys here. Sally was admitted back to the hospital on Fri morning for a headache. Of course they did a CT and all the tests and everything is negative. They said its common with a transplant. They have her drugged up and waiting for it to stop. Of course being on 50 meds always bring into question if it could be a side effect. Her nausea is minimal and eating. Otherwise everything is going great except the headache.
The boys had a blast. Toured Safeco field, home of the Seattle Mariners. Went on ferry ride and multiple other things. I will post some more when i get home here in a few days.
Thursday, April 2, 2009
Monday, March 30, 2009
over 1000
hello,
sorry its been a few days. Her counts this am 1,048. as most know, sally is home and i have gone from a turles pace to just crazy. I was playng bacheleor(sp?) for almost 3 weeks. so spent the weekend cleaning, laundry, and taking care of sally. she still takes a hanfull of meds 4x/day and at least 2 i.v. bags. learning how to get the routine down. Nausea still an issue but slowly subsiding. boys came into town today for four days so that made her smile. they are acutally all napping now. I will post some pics tomm with the latest info and craziness.
craig
sorry its been a few days. Her counts this am 1,048. as most know, sally is home and i have gone from a turles pace to just crazy. I was playng bacheleor(sp?) for almost 3 weeks. so spent the weekend cleaning, laundry, and taking care of sally. she still takes a hanfull of meds 4x/day and at least 2 i.v. bags. learning how to get the routine down. Nausea still an issue but slowly subsiding. boys came into town today for four days so that made her smile. they are acutally all napping now. I will post some pics tomm with the latest info and craziness.
craig
Friday, March 27, 2009
going to apartment
well,
today her counts have gone up to 480. eating, taking meds and keeping it down. She is doing well and the team agreed to send her to the apartment. yeah ha. she will still need an i.v. a day in the apartment that i get to do but hey, something to do. She plans on sending out an email to everyone in a few days. thanks again for all your thoughts and prayers.
craig
today her counts have gone up to 480. eating, taking meds and keeping it down. She is doing well and the team agreed to send her to the apartment. yeah ha. she will still need an i.v. a day in the apartment that i get to do but hey, something to do. She plans on sending out an email to everyone in a few days. thanks again for all your thoughts and prayers.
craig
Thursday, March 26, 2009
Hello,
Well its Thurdsday and only a few things to talk about. Her counts are now at 180. Slow but progressing. They have switched all her meds to pill form and she is eating a good amount of her daily caloric intake. She is slowly feeling better and nausea is decreasing. She's still walking and starting to get alittle moody which of course are all good signs.
Well its Thurdsday and only a few things to talk about. Her counts are now at 180. Slow but progressing. They have switched all her meds to pill form and she is eating a good amount of her daily caloric intake. She is slowly feeling better and nausea is decreasing. She's still walking and starting to get alittle moody which of course are all good signs.
Wednesday, March 25, 2009
150 now and walking
Hello,
Well today is Wed and the counts are at 150. the specialists say should be a few more days and might go to apt. They told her she needs to eat and start walking. so included are some pics of her walking. Also caught her looking for a way out---at least thats the way it looks. Nausea still here but she is eating some.
Monday, March 23, 2009
140 and rising
well had an update from bloodwork earlier this am and her neutrophil count is now at 140. they expect her to be around 500 in 2-3 days. she is also going to try to eat dinner so should be interesting
Day 16
Hello everyone,
not sure where i left off last time but today her neutrophil count is 110. so still on track. I think the thought of getting out in less than a week has had its benefits. Shes asking what "needs" to be achieved so she can go home. So the usual type A personality is coming back. She has to take in her daily caloric intake, all meds, and counts to 500 for about 3 days. The nausea is the big factor for her but little by litle getting better. As u may have seen in her last pic the hair is gone. except i noticed she must be sleeping on her sides more because there is one big stripe down the back. I included the picture for embarrasment. I'll pay the piper later I'm sure.
craig
Saturday, March 21, 2009
No News is Good News
Hello,
well is's Saturday the 21st at 2:00 p.m. with nothing new to report. Sitting in same chair wondering what makes time so slow. Sally is doing good. She is still having alot of nausea which repquires meds which makes her tired and sleepy which makes me bored. Counts are still the same. Meds still the same except they had to give her some blood this morning so I took some pictures. It happens when they destory your bone marrow that makes the blood products.
Boys are doing great and actually having a blast with the Sauberan's. I'm jealous.
Otherwise have a great weekend!
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