I mentioned in two posts ago that I had gone over to Idaho to the Pain Management Clinic. Interestingly, it is the only clinic, and the only pain management doctor, in our entire area.
I have learned how difficult, sensitive, and sometimes touchy the subject and treatment of pain is. Doctors and other providers are constantly vigilant for pain med junkies. They have to be. Some people shop doctors, clinics, urgent cares, ER's, and hospitals for pain meds. They rob pharmacies, steal scrip pads, and alter scrips they legitimately get. They rob from people they know possess them (yes, a little scary). It really is pretty crazy how extensive the problem is.
Pain Management Contracts are entered between some patients and their providers to state in writing how much pain med someone can get in a certain period of time. I think that providers also have to watch their patients who are legitimately on the meds because they could turn out to really, really like them and want more and more. Even when they no longer need them.
Personally, I don't get it. Most pain meds make me nauseous or vomit. The ones that don't certainly don't make me feel euphoria. But I know some people really enjoy them and apparently get a good high. In fact, one of my best childhood friends has fought this addition since his teens.
Anyways, I always feel awkward discussing my pain and my need for pain meds. I have this strong need to not be viewed as a junkie or that I manipulate my husband's position to somehow have better access to them. And I also really don't want to become addicted.
There was also the confrontation I had with a Group Health Hospitalist during a hospital stay in September. Long story short, this yahoo thought I was a pain med seeker after I asked for a pain pill in the middle of the night. So the next day he comes in to do his visit/exam and insinuates that I was looking for a high. Asshole. Fired him, and gave the nursing staff a good laugh.
I guess this is in part why there are Pain Management Specialists. They screen out the users. They also end up dealing with people like me who all the traditional regimens are still not enough. I was apprehensive that they would just write me a scrip for 500 pills of something...... The good news is that they felt we had several options left to try, utilizing both my current opioid meds along with other medications that specifically target nerve pain. THANK YOU, THANK YOU! I was elated that there was hope. Someday, I would like to sleep more than a little here and there due to pain. I would like to be able to move throughout a normal day without restriction due to pain. And maybe someday I could add some physical activity without all the pain. My "high" would be good sleep and no pain!
Unfortunately, they did tell me that their experience with cancer patients with neuropathy (that's what causes all my pain) can be rocky. It can take a lot of fine-tuning. And sometimes they can reach improvement but not total control of the pain. So they ask you to keep in mind that down the road they may have to find a more opiate-based regimen. And once again, a doctor looked me in the eye, with that serious and grim face, and delivered his clincher that the pain often never gets better or goes away. Huh. I'll go with the above paragraph, thany you very much!
I finally gave up trying to sleep tonight but I am optimistic that there ideas can make some big improvements. I like optimism and I like hope. And I LOVE good news!
Thursday, January 28, 2010
Time To Update
Wow, it amazes me that I started this blog so long ago. A lot of entries, a lot of "stuff". I will be updating my page in the near future. Any suggestions?
Tuesday, January 26, 2010
We Each Have A Story
I learned a valuable lesson yesterday. I was at my intake appointment at Pain Management of North Idaho, over in Coeur d'Alene (the only pain management doctor/clinic in the entire Greater Spokane area). During a very long assessment with the Nurse Practioner, she asked a lot of questions about my cancers and bone marrow transplant. Since I have the answers down pat, I was just rolling off my standard replies and explanations. It really wasn't until the end of the appointment, and hour and a half later, that it really hit me that she had said that her brother had not survived his transplant. Huh.
So as I gave my medical professional version of my health, she already knew alot of it. But I had failed to LISTEN, to really hear what she was saying. She had a story too. Not too proud of this one.
I wrote her a note today, confessing my self-absorption. I genuinely hope that at my next appointment that she will share with me about her brother, who he was, his journey and hers.
So this really got me thinking about how many other times I have tuned people out because I am not listening. We all do it, but I know I need to work on this. It goes onto my Goals List for 2010.
I should have learned a little about this from my WalMart experience around a month ago. I'm walking along (think very early am to avoid crowds) and a woman says to me, "God, I wish I was skinny like you." I took a couple more steps, turned around and went back. It was the proverbial straw breaking the camel's back. So I say to her, "Well, you probably could be but you have to have alot of cancer, have a BMT, and still be really sick all the time." I'm pissed. I am so tired of people commenting on my weight! Like I think this is attractive?!
So the poor woman who is receiving my months of frustration, who is very overweight and in a wheelchair, says to me, "Honey, that's how I lost my leg. I had lymphoma."
Lesson learned. The hard way.
So as I gave my medical professional version of my health, she already knew alot of it. But I had failed to LISTEN, to really hear what she was saying. She had a story too. Not too proud of this one.
I wrote her a note today, confessing my self-absorption. I genuinely hope that at my next appointment that she will share with me about her brother, who he was, his journey and hers.
So this really got me thinking about how many other times I have tuned people out because I am not listening. We all do it, but I know I need to work on this. It goes onto my Goals List for 2010.
I should have learned a little about this from my WalMart experience around a month ago. I'm walking along (think very early am to avoid crowds) and a woman says to me, "God, I wish I was skinny like you." I took a couple more steps, turned around and went back. It was the proverbial straw breaking the camel's back. So I say to her, "Well, you probably could be but you have to have alot of cancer, have a BMT, and still be really sick all the time." I'm pissed. I am so tired of people commenting on my weight! Like I think this is attractive?!
So the poor woman who is receiving my months of frustration, who is very overweight and in a wheelchair, says to me, "Honey, that's how I lost my leg. I had lymphoma."
Lesson learned. The hard way.
Friday, January 22, 2010
Cup of Noodles
We recently learned what happens if you put a Cup of Noodles, with all its packaging/wrapping, in the microwave, without water, for three minutes. You get a fire with toxic smoke, lights and sirens with a firetruck and paramedic rig, and a number of young strapping firemen.....
They have some cool equipment though, kind of like the movies. One device is pointed towards the fire and registers all the temperatures.
The nice firemen remove the smoldering Cup of Noodles and then remove the microwave.
It smells really bad.
Then you can either leave for several hours for the house to air out or let them use their smoke machines, which unfortunately leaves carbon monoxide behind. We "evacuated".
Lots of neighbors call to offer their help with the boys because they think the ambulance is here for me. But it's good to know they care.
Ultimately John Paul's snack efforts were demonstrative of his maturity to get an adult if there is smoke or fire and his knowledge that 911 summons the Fire Department. He was going to stop, drop, and roll down the hallway to tell me about the smoke. There is no way I could have maturely handled that!
And 2010?
A belated Happy New Year to everyone! I write you hoping that you all had a blessed holiday season. After a very hectic December and a rather full start to 2010, I am pledged to one of my goals for the year: to get back in the saddle and BLOG!
It seems that I always think there will be a "right" time to start writing again. A juncture in my journey where I can say, "Well, all of this and that happened, but now it's all clear". However, that moment continues to allude me. That turning point, that ah-hah moment, have yet to come. So I jump in with both feet, with a longggggg list of topics and events I would like to share, to fill in the many gaps in my postings.
First and foremost, I made it! I am alive in 2010! I did not know on New Year's a year ago if I would end the year with you. It was an incredible blessing to witness a new year's dawn and to be a part of this new decade. It remains a one day at a time life. Sometimes I am literally withdrawn from it all as I continue to face medical challenges. But through God's grace, with the love, support, and prayers of many, and those who have literally pulled me through each day, I smile as I write you now. I am here. I made it!
It seems that I always think there will be a "right" time to start writing again. A juncture in my journey where I can say, "Well, all of this and that happened, but now it's all clear". However, that moment continues to allude me. That turning point, that ah-hah moment, have yet to come. So I jump in with both feet, with a longggggg list of topics and events I would like to share, to fill in the many gaps in my postings.
First and foremost, I made it! I am alive in 2010! I did not know on New Year's a year ago if I would end the year with you. It was an incredible blessing to witness a new year's dawn and to be a part of this new decade. It remains a one day at a time life. Sometimes I am literally withdrawn from it all as I continue to face medical challenges. But through God's grace, with the love, support, and prayers of many, and those who have literally pulled me through each day, I smile as I write you now. I am here. I made it!
Wednesday, November 18, 2009
So True, So True
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ----Mother Teresa
The 1st Grade
It seems absolutely IMPOSSIBLE that John Paul is in 1st Grade this year! He continues at All Saints Catholic School and is extremely proud to be in a "grade". No more "letter classes", ie. P3, P4, or K. He is already counting years to high school, when he can play football, when he can go to Gonzaga......
Craig and I are incredibly proud of how well he is doing in school. With all that has gone on in his life, it's easy to worry that he will not meet his potential or perhaps will act out. His Progress Report and Report Card reflect that he is adjusting and finding his groove.
He has found a good fit with his teacher, Miss Vogel, again this year. His seat has been moved a few times....So I can definitely say he is enjoying his classmates! He misses some of his buddies that are in the other 1st grade classroom, but they seems adept at finding each other at recess or otherwise.
A special thank you to All Saints, who has helped and supported our family and continues to ensure that our boys receive the education we hoped for them. The teachers, staff, and families have been wonderful. We truly feel a part of the community.
The pics are from his first day.
P.S. He is finally getting one of his front teeth.....
"Just Thinking About Math"
I couldn't write about some of the many special people in my life without including a story about one of my boys. John Paul is turning seven (How did that happen?!) next month. He is quite the thinker. His questions and thirst for knowledge both entertain us and scare us.
One day a few weeks ago, John Paul and I were in the car. He was being rather quiet, which is also rather unusual. So I glance in the rearview mirror a couple of times. He is gazing out the window, deep in thought. Finally I ask him if everything is okay. Then I ask what he's thinking about. His reply: "Just thinking about math."
Okay. He was silent for the next twenty minutes.
So kudos to his teacher, Miss Vogel, who has apparently made math an exciting and engaging subject.
Just thinking about math. Oh, John Paul......
My Friend, Charyl
Okay, so I am behind. Again. As usual. As always.... I thought I would begin my catch-up by sharing a little about some special people in my life. Today, I will start with my friend, Charyl.
I wrote about her along time ago so the name may be familiar. Charyl is 93 years young. She is a church friend of my Aunt Marjorie and Uncle Jim in West Hills, CA. Charyl is a resident in a nursing home and embraces every activity offerred at full speed! In addition to bingo, parties, costume events (recently as Spider Woman), and visitors, she finds the time and desire to write me. About once a week. For over a year.
I have never met her. I have very definite mental pictures of her, as she writes (by typewriter) of her various activities. She sends words of wisdom, too, and often includes poems, authored by her or others. There is no doubt in my mind that Charyl's will could heal me itself!
Her unique, generous, and gracious friendship reminds me that we know not what another's journey is. Only to remember that we each have our own. And somedays, a simple guesture can genuinely affect how another faces the day. Thank you, Charyl, for sharing.
I wrote about her along time ago so the name may be familiar. Charyl is 93 years young. She is a church friend of my Aunt Marjorie and Uncle Jim in West Hills, CA. Charyl is a resident in a nursing home and embraces every activity offerred at full speed! In addition to bingo, parties, costume events (recently as Spider Woman), and visitors, she finds the time and desire to write me. About once a week. For over a year.
I have never met her. I have very definite mental pictures of her, as she writes (by typewriter) of her various activities. She sends words of wisdom, too, and often includes poems, authored by her or others. There is no doubt in my mind that Charyl's will could heal me itself!
Her unique, generous, and gracious friendship reminds me that we know not what another's journey is. Only to remember that we each have our own. And somedays, a simple guesture can genuinely affect how another faces the day. Thank you, Charyl, for sharing.
Wednesday, October 28, 2009
Kathy Howard
Yesterday was the anniversary of my friend's, Kathy Howard, bone marrow transplant. She is never far from my mind and is always in my prayers. Unfortunately, her transplant was unsuccessful and she passed away in March the following year.
Three years ago we celebrated that a donor had finally been found. She had very unique HLA typing and she had to wait for a donor. We celebrated that she lived long enough to get to transplant. And we celebrated the life she would have back after transplant.
Kathy taught me about leukemia. We had only met once, very casually, when I learned that she had been diagnosed with AML. She had gone to a routine doctor visit and was in the hospital that night. She taught me about the disease, the treatments, and bone marrow transplantation. She taught me about HLA typing, what happens if there is no match, testing costs, Social Security, being immunosuppressed, and Fred Hutch.
We held a bone marrow donor drive. Although statistically highly unlikely to match Kathy, it raised awareness and hopefully will save someone else's life.
Kathy taught me about Seattle Cancer Care Alliance and the Pete Gross House. I learned about conditioning, transplant, and recovery. We would talk as she swallowed the horrible daily regimen of pills, while sitting at her dining table in her apartment at Pete Gross.
She came home too soon. She enjoyed, a loose term, her last weeks in her home in Spokane, surrounded by family, and with the help of Hospice.
She was an incredible singer and made some beautiful music after being diagnosed. She was undoubtedly most proud of the song she wrote for her husband Dan, which was played at her memorial.
Interesting how a brief introduction drew me to her. She taught me what I didn't know I would ever need to know. There have been many times when of all the people I know, I have wanted to talk to her. She knew me before I knew myself.
Kathy was a wonderful mother who absolutely adored her grandbabies. She was a devoted and loving wife to her husband. She was a special neice to her aunt and uncle, who lived next door, also in a Historical Society house. She was a good friend to many.
She was a fighter and waged a valiant fight. She was proud and chose death on her terms, dying with dignity, surrounded by love, and having taught so many the meaning of "grace". I just wish the "Social Calls" were still coming.
Three years ago we celebrated that a donor had finally been found. She had very unique HLA typing and she had to wait for a donor. We celebrated that she lived long enough to get to transplant. And we celebrated the life she would have back after transplant.
Kathy taught me about leukemia. We had only met once, very casually, when I learned that she had been diagnosed with AML. She had gone to a routine doctor visit and was in the hospital that night. She taught me about the disease, the treatments, and bone marrow transplantation. She taught me about HLA typing, what happens if there is no match, testing costs, Social Security, being immunosuppressed, and Fred Hutch.
We held a bone marrow donor drive. Although statistically highly unlikely to match Kathy, it raised awareness and hopefully will save someone else's life.
Kathy taught me about Seattle Cancer Care Alliance and the Pete Gross House. I learned about conditioning, transplant, and recovery. We would talk as she swallowed the horrible daily regimen of pills, while sitting at her dining table in her apartment at Pete Gross.
She came home too soon. She enjoyed, a loose term, her last weeks in her home in Spokane, surrounded by family, and with the help of Hospice.
She was an incredible singer and made some beautiful music after being diagnosed. She was undoubtedly most proud of the song she wrote for her husband Dan, which was played at her memorial.
Interesting how a brief introduction drew me to her. She taught me what I didn't know I would ever need to know. There have been many times when of all the people I know, I have wanted to talk to her. She knew me before I knew myself.
Kathy was a wonderful mother who absolutely adored her grandbabies. She was a devoted and loving wife to her husband. She was a special neice to her aunt and uncle, who lived next door, also in a Historical Society house. She was a good friend to many.
She was a fighter and waged a valiant fight. She was proud and chose death on her terms, dying with dignity, surrounded by love, and having taught so many the meaning of "grace". I just wish the "Social Calls" were still coming.
My Body Over the Past 24 Hours
Yesterday was a really hard day for me. I would have written about it all yesterday, but things just kept coming. So, I have missed a day of writing and getting you caught up. I was actually really impressed that so many of you are still checking my blog and knew I had written. And without an email inviting you back to SallyLand!
I had a lengthy visit with my doctor yesterday. Frankly, I imagine she just shudders when she sees that I am on her schedule! She is absolutely wonderful, never looks at her watch, and follows up like nobody's business. (I would write her name but I haven't asked her yet if that would be okay.)
So I had a STAT vascular ultrasound study on my legs. I have been having this weird pain, knees down, and it seemed the best thing to do to rule at any clots in my legs. Hooray! Negative! So nice to hear. The oncologist told my primary care doctor that I shoul start cumadin (vs. Lovenox) so that was gone over. Then the whole blood infection and affects on the kidneys. Plus at least twenty other topics.
Once again, I called the Moms at John Paul's school to find a ride for him since I would still be getting my test. Again, they were ready to help. I can't thank all of you enough. And I am sorry to have asked, yet again.
Today I woke up with back pain. Then I couldn't pee. Then I had really bad back pain. Trip to doctor's office. Tiny bit of pee. Blood in the pee. Medicine hurting my kidneys (not really my back hurting). Doctor is contacted at home. Enter Infectious Disease doctor (in charge of blood infection). Vanco (IV antibiotics) ends tomorrow with follow-up cultures in a week. Enter Urologist. STAT CT with contrast being arranged as I type. So I'll be off to somewhere soon.
If I don't pee by the morning, the world ends, apparently.
Just hung up with my Home Nurse, who called to say that they need STAT draws in the morning. Now I am totally confused. We played who said what to whom and when. My high from discontinuing Vanco tomorrow is now gone. There are too many doctors, too many tests, too much conflicting info. Home Nurse will try to figure it out and will call me back.
So I wait by the phone for two urgent calls telling me where I will be and what life will be like for the next day. Nothing new here.
I had a lengthy visit with my doctor yesterday. Frankly, I imagine she just shudders when she sees that I am on her schedule! She is absolutely wonderful, never looks at her watch, and follows up like nobody's business. (I would write her name but I haven't asked her yet if that would be okay.)
So I had a STAT vascular ultrasound study on my legs. I have been having this weird pain, knees down, and it seemed the best thing to do to rule at any clots in my legs. Hooray! Negative! So nice to hear. The oncologist told my primary care doctor that I shoul start cumadin (vs. Lovenox) so that was gone over. Then the whole blood infection and affects on the kidneys. Plus at least twenty other topics.
Once again, I called the Moms at John Paul's school to find a ride for him since I would still be getting my test. Again, they were ready to help. I can't thank all of you enough. And I am sorry to have asked, yet again.
Today I woke up with back pain. Then I couldn't pee. Then I had really bad back pain. Trip to doctor's office. Tiny bit of pee. Blood in the pee. Medicine hurting my kidneys (not really my back hurting). Doctor is contacted at home. Enter Infectious Disease doctor (in charge of blood infection). Vanco (IV antibiotics) ends tomorrow with follow-up cultures in a week. Enter Urologist. STAT CT with contrast being arranged as I type. So I'll be off to somewhere soon.
If I don't pee by the morning, the world ends, apparently.
Just hung up with my Home Nurse, who called to say that they need STAT draws in the morning. Now I am totally confused. We played who said what to whom and when. My high from discontinuing Vanco tomorrow is now gone. There are too many doctors, too many tests, too much conflicting info. Home Nurse will try to figure it out and will call me back.
So I wait by the phone for two urgent calls telling me where I will be and what life will be like for the next day. Nothing new here.
Monday, October 26, 2009
Sacred Heart Frequent Flier Miles
What a month it has been! When Craig and I were in Seattle in September (another story), I had a constant headache. As I am not a headachey person, I assumed it was stress and began an around the clock Tylenol regimen.
Within a few days of returning home, I gut instinct feeling that something was wrong, plus feeling like crap, hit. The primary care doctor saw me and called my oncologist, who requested blood cultures in addition to some other tests already planned. Turns out that nasty headache was a symptom of a blood infection. You know, that "blood poisoning" stuff? So off to Sacred Heart (it's a hospital)! My Hickmann line was pulled (the port access in the chest) and a PICC line inserted (peripherally placed central line) so I could go through IV antibiotic treatment. Although the Hickmann was colonized, both the blood draw from the Hickmann and a regular site were positive.
So I get to feeling a bit better and go home to finish the IV regimen. Then I go to the doctor for follow-up and I have REALLY low blood pressure. So for two days I go in to get fluids and have my blood pressure checked. My lucky day was three, where I could no longer maintain a reasonable blood pressure. At 70 over 30, I was passing out sitting up. I got to meet a number of very strong and handsome young men as they arrived at the chemo suite to take me to the hospital. We are talking firetrucks, supervisors, ambulances, the works. This is one of my worst nightmare scenarios.
Off to the hospital I go, except my hospital is diverting because the ER is full. So I go in an ambulance, across the street from my doctor's office, to that hospital. I didn't even get to check the inside out or see how good they were.....
Long story short, the next day I am at Sacred Heart for another vacay. Yes, less than a week later. Turns out the blood infection didn't quite go away and it was affecting me particularly through blood pressure and hearrate. Enter cardiologist.
By this point I have had three sets of blood cultures, all pending. IV antibiotics. Hospitalist discharges me saying cultures are negative. Two days later my non-hospitalist doctor calls me to find out what antibiotic I am on. Uh-oh.
Turns out the hospitalist read one set of cultures' preliminary report of negative. When the final reports came in, two of three sets were positive (don't ask about the third). I pack this time, knowing I will need to bring some stuff.
PICC line out, IV line in. PICC line in. Groovy sedation for heart tests. Good news: There's no "vegetation: on my heart valves. (Never heard of heart vegetation and I definitely didn't want any.) Lots of IV antibiotics. I did get to stay on a new floor, which was really nice.
So I continue my IV antibiotics at home, a two week regime. Then off for one week, then cultures. The only reasonable explanation for why the infection has not gone away are that 1. I am immuno-compromised and blood infections are serious for healthy people and 2. It's hiding out somewhere. Hopefully we will not have to hunt it down.
So for the last month I have been in some hospital each week and feeling crappy even at home. I have cancelled and rescheduled so many appointments that it is embarrassing. I am determined to make no commitments until I stay out of the hospital for two weeks. I have a week to go......
Unfortunately, I also developed a blood clot during the last Sacred Heart trip, followed by a second one which was either new or just discovered. So add some vascular ultrasounds to the mix, and daily Lovenox injections, and you pretty much know it all.
Once again, my body has betrayed me. I am so sick of being sick. I can't tell you how claustrophobic it can be.
So, at least for the past month, this is my story. And why I remain elusive and evasive and out-of-touch. I just haven't turned the corner yet.
Within a few days of returning home, I gut instinct feeling that something was wrong, plus feeling like crap, hit. The primary care doctor saw me and called my oncologist, who requested blood cultures in addition to some other tests already planned. Turns out that nasty headache was a symptom of a blood infection. You know, that "blood poisoning" stuff? So off to Sacred Heart (it's a hospital)! My Hickmann line was pulled (the port access in the chest) and a PICC line inserted (peripherally placed central line) so I could go through IV antibiotic treatment. Although the Hickmann was colonized, both the blood draw from the Hickmann and a regular site were positive.
So I get to feeling a bit better and go home to finish the IV regimen. Then I go to the doctor for follow-up and I have REALLY low blood pressure. So for two days I go in to get fluids and have my blood pressure checked. My lucky day was three, where I could no longer maintain a reasonable blood pressure. At 70 over 30, I was passing out sitting up. I got to meet a number of very strong and handsome young men as they arrived at the chemo suite to take me to the hospital. We are talking firetrucks, supervisors, ambulances, the works. This is one of my worst nightmare scenarios.
Off to the hospital I go, except my hospital is diverting because the ER is full. So I go in an ambulance, across the street from my doctor's office, to that hospital. I didn't even get to check the inside out or see how good they were.....
Long story short, the next day I am at Sacred Heart for another vacay. Yes, less than a week later. Turns out the blood infection didn't quite go away and it was affecting me particularly through blood pressure and hearrate. Enter cardiologist.
By this point I have had three sets of blood cultures, all pending. IV antibiotics. Hospitalist discharges me saying cultures are negative. Two days later my non-hospitalist doctor calls me to find out what antibiotic I am on. Uh-oh.
Turns out the hospitalist read one set of cultures' preliminary report of negative. When the final reports came in, two of three sets were positive (don't ask about the third). I pack this time, knowing I will need to bring some stuff.
PICC line out, IV line in. PICC line in. Groovy sedation for heart tests. Good news: There's no "vegetation: on my heart valves. (Never heard of heart vegetation and I definitely didn't want any.) Lots of IV antibiotics. I did get to stay on a new floor, which was really nice.
So I continue my IV antibiotics at home, a two week regime. Then off for one week, then cultures. The only reasonable explanation for why the infection has not gone away are that 1. I am immuno-compromised and blood infections are serious for healthy people and 2. It's hiding out somewhere. Hopefully we will not have to hunt it down.
So for the last month I have been in some hospital each week and feeling crappy even at home. I have cancelled and rescheduled so many appointments that it is embarrassing. I am determined to make no commitments until I stay out of the hospital for two weeks. I have a week to go......
Unfortunately, I also developed a blood clot during the last Sacred Heart trip, followed by a second one which was either new or just discovered. So add some vascular ultrasounds to the mix, and daily Lovenox injections, and you pretty much know it all.
Once again, my body has betrayed me. I am so sick of being sick. I can't tell you how claustrophobic it can be.
So, at least for the past month, this is my story. And why I remain elusive and evasive and out-of-touch. I just haven't turned the corner yet.
Can I Use The Same Post Twice?
Here I am, finally, connected to the internet, logged in to my blog, trying to figure out where to start. Essentially, I would like to repeat all the sentiment of my most recent post, even though it was way too long ago.
Many of you have told me that you worry when I don't write..... Oh, you know me so well. I continue to be unable to manage it all and frankly struggle to get through a "good" day. I am beginning to feel the stirings of a need to write, almost a purge of sorts. This may be the "Blogfest" that I promised on Facebook long ago....
I am really going to try not to whine nor only express only doom-and-gloom. But sometimes it does feel that way.
Thank you for sticking with me. I AM still here.
Many of you have told me that you worry when I don't write..... Oh, you know me so well. I continue to be unable to manage it all and frankly struggle to get through a "good" day. I am beginning to feel the stirings of a need to write, almost a purge of sorts. This may be the "Blogfest" that I promised on Facebook long ago....
I am really going to try not to whine nor only express only doom-and-gloom. But sometimes it does feel that way.
Thank you for sticking with me. I AM still here.
Friday, July 31, 2009
Why I Didn't Write For So Long
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......
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......
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.
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