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.

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.

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.

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.

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.

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......

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.

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.

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.

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

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

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

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

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.

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! ;)

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.

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

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.

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.

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

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

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.

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!

Thursday, March 19, 2009

counts are here







Hello everybody,
Well today was a big suprise in a terrific way. The "Team" of doctors and of course P.A.s who do the rounds in the morning notified Sally that she actually has started to show counts. For those of you wanting to know what counts are----they are white blood cells (WBC).
the chemo destroys all marrow which of course makes WBCs. The donor marrow settles in and starts to make cells and one kind are WBC. Now although it is a terrific sign, they wont consider her engrafted until she reaches a count of 500. she is at 30. The team expects it to reach the mark of 500 in a few days.
Sally commented on that her mouth and throat feel alot better and is the first time that the body is starting to fight back.
She still is on everything under the sun I.V. and still has a week in the hospital if everything continues to improve.
Included are a few pictures i took. One picture is the chair that i've spent many house sitting in. Another is the weather channel that she was watching. Spend enough time in a room feeling like garbage and even the wetaher channel becomes exciting. Another is of the case of diet coke hidden behind the chair. And oh ya, Gonzaga plays today so theres my plug for them.

Wednesday, March 18, 2009

St. Patricks Day

Hello,
Well just figured out yesterday was st patrick's day. so happy day. nothing new to report. same o same o. she's still feeling miserable but should start feeling better by this weekend and next week the counts should go up. Thanks for all the thoughts and prayers. I'll post some new pics tomm.

Monday, March 16, 2009

Maury?

Hello everyone,
Today is day nine since it's day nine after transplant. Its how they keep track during her 3 week stay. She has had alot of mouth, throat and stomach pain. It is to be expected due to the chemo.
As far as new events. She has found Maury Povich on T.V. to help pass the time. If you have spare time, it is a funny show.
Jan and Galen left yesterday and got home safely. I think they missed the 70+ weather. Seattle in March is a little different than Arizona.
Brennan and John Paul went to Leavenworth, WA with the Sauberans. Its a small town with Bavarian heritage and still looks like its homeland. Of couse Sally and I haven't beent here yet.
Its difficult to keep busy in a room for 3 weeks. Thank God for internet. Otherwise nothing else new which is good news.

Thursday, March 12, 2009

Tower of Pisa



Well its Thursday and a few new things. Sally's nausea is under control and starting to walk around the wing of the hospital. She still has hair as you can see in the picture but only for a few more days. We spoke with the P.A. and she will have more nausea and stomach pain until the new cells start to take over. The "engraftment" is still approx 10 days away. The chemo kills all cells so anywhere there are living cells that reproduce quickly get affected. i.e. stomach, throat, and mouth tissue, hair follicles, etc. Heart muscle, lung tissue etc don't reproduce.
Overall she is doing o.k. Still has about 2 weeks in the hospital. The staff and nurses are great and have been doing this for a long time.
The Pisa pic is her I.V pole. it contains nutrients, fat emulsion, 2 antibiotics, antivirals, and an anti rejection medication. the machines have 6 pumps and many tubes that lead into her Hickman line. Amazing how it all works out for the good.
I'll be keeping you guys informed and maybe with pics of her walking around.

Monday, March 9, 2009

Nothing new

Hello,
Well, nothing new to report. She is still having nausea and giving some meds to control that which makes her droggy. She is starting to get mouth and belly pain which is to be expected. It's a reaction to the chemo. Otherwise sleeping when we can and wishing for sunshine here in Seattle.

Saturday, March 7, 2009

New Birthday






Hello Everyone, Well last night, Sally got a new Birthday. After expectating the cells to get there around 8:30, they finally appeared around midnight. The Nurses brought in three I.V. bags and attached them to the pump. Thats it. Pretty amazing that rebuilding one's bone marrow which supports all your cells in your body is all done by connecting a hose. It took about 4-5 hours to infuse the three bags. Sally and I slept through most of it. Included are a few pics of the process and a video of the i.v. line with the blood reaching her port. It was somewhat anticlimatic but amazing to see the process of ones's new life. The evening did have the feeling of a new born baby appeared in this world. Sally is resting as am I.
P.S. The Hannah Montana window magnet was from me.
Take care all.

Friday, March 6, 2009

cell day

Hello, O.K. I'm a day late on the update but actually nothing really to comment on yesterday. Thursday was a day of rest. In other words, no chemo and sleep. She's doing well besides the nausea. Her parents came in on Wed. We hosted a "new" birthday party today for her. she was pleased as you can tell by the pics. She will get the new cells/marrow tonight around 8:30. Then after that we sit and wait for the blood counts to rise. the chemo of course kills all white and red cells. so after the transplant, we wait to see if it takes. Kids are doing great so hats of to the Sauberan's for keeping that off the worry list. I sent out a text earlier just to let everybody in my phone with the correct number an update.
video

Wednesday, March 4, 2009

day 2





Well Hello,
today is the beginingof day 2 of being admitted to the hospital. yesterday was pretty boring. she did get her 1st dose of i.v. chemo which was uneventful, a good thing. alittle nausea but controlled with medication. today is the same. 1 more dose of chemo and more meds to control the nausea. The docotrs say it is boring till about day 4 or 5. then the sickness, hair loss and diarrhea starts.
she is sleeping alot from the side effects from the meds to control the side effects of the chemo. isn't medicine terrific. she has a great view of the bay and capitol hill. I'll try to post some pics later.

Sunday, March 1, 2009

Holy Cow!!!!!!

Hello everyone,
Well this is my first time posting a blog so I need some slack from you internet stars. This will be a quick update. Fot the last 5 days, Sally has been taking meds around the clock. Aprox 150 tablets a day. The first chemo meds are 28 tablets every 6 hours. Not to mention the other meds to help with side effects. I of course have to set alarms around the clock to wake her up to take them. the side effects are contolled very well, except their side iffects. she is corked up like a drunk which is better than being sick all day.
Everyday she has bloodwork at the clinic every 2 hours from 8:00 a.m. till about 3:00 p.m. so with the combination of labs, meds and regular day activities, sleep has been of upmost imprtance for both of us.
She will be admitted on Tuesday for the big chemo and then the donor marrow on the
6th.
I found it interesting that the marrow is given I.V. The cells know where to go after that. Isn't nature amazing. They have no idea why or how, but they do.
when she is in the hospital, we should be able to keep up with the information and events almost daily. Thanks for all the prayers and thoughts and will talk to you all soon,.
craig

Thursday, February 19, 2009

Thursday, February 19, 2009














I am exhausted! They really were not kidding that you are busy when you are here. I spend alot of the day at the Clinic and alot of the day washing, cleaning, and sterilizing things. All just to get ready to start conditioning and for transplant. There are prescriptions to fill and paperwork to read. Frankly, by the time I have done as much as I can, I crawl into bed.

I always know when I have gone too long inbetween blog posts and answering emails. The theoretical phone lines start burning! So I am going to really try to get caught up and stay caught up. Right.... At least I can try!

So much has happened since I have been here, and much of which I want to write about. I think the easiest way to get up to speed is to write entries "diary style", ie. by date. I jotted down notes along the way and took pictures when I could get compliant subjects. I'll start with today, and then go back to when I first got here. (The weird part is that you will end up reading the events out of order as well.)

Today began with my pesky alarm clock interrupting some much needed sleep. Shower and groom, including trying to figure out what do do with the hair that should have been cut and colored but seemed like a waste when it's going to be gone soon. Dress in layers.

Off to the Clinic! Every single day when you enter the Clinic EVERYONE must go through flu and cold screening. You fill out a form and they give you a sticker to wear. This is REALLY serious business. Everyone checks for your sticker throughout the day. They are not kidding when they say to display in a prominent place. If I ever learn the color stickers in advance, perhaps I can coordinate my outfits to match. The Sticker Lady did not want to be photographed but here's a picture of the station.

I had Labs at 8:45 am. It is really an exceptionally well-coordinated system, particularly impressive with the large numbers of people who go through. Here are a couple of pictures of the Lab Waiting Area. It was through getting in potential trouble taking these pictures that I made a new friend, Stacey. She is one of the staff in the lab. We've exchanged blog addresses and she, I think, is now a fan. (I asked permission from the Clinic to take pictures when I got here. It is okay as long as anyone identifiable grants me permission.)

After Labs, it's up to the 6th Floor, home of the Transplant Clinics. This is where almost all my appointments are. Your Team (Hooray! I'm Lime!) lives here. This includes my attending, my primary provider, my team nurse, my scheduler, my nutritionist, my social worker, and my pharmacist. When you check in at the reception desk, each time you ask for your "mailbox" to be checked (It's actually team color-coded hanging files. See picture for details.) Anyways, this is how you get the ever-chaging revised "itinerary" for the day and week. Each Friday you also get a schedule for the next week too. But I've had alot of changes so I check, check, check. If there are any other printed materials for you, they put them in there as well. I digress....

The Transplant Clinic has large waiting room, complete with isolation sections. there is also a video game area. While I imagine it was designed for pediatric patients, I'll put odds on Craig playing. The view is INCREDIBLE. It looks out over Lake Union. Here are some pics.

Then back to my Scheduler's desk. She literally coordinates everything. Again, very impressive system at work and my Scheduler, Carole, has been awesome. Here's a picture of her and Troy, who sits next to her but schedules for a different Team. I often loiter about, looking for some conversation for my sorry self. They have both been great about tolerating me.

My 9:30 am Support System appointment was cancelled at the last minute. So I make my way to Oral Medicine, also on the 6th Floor, to check in regarding my teeth issues. More on this debacle later... Patti and Michelle have been incredible and have really helped me. Kudos to them.

Stopped by Pastoral Care and then coincidentally met my Team Pastor Steven in the hallway. I haven't learned about many of these resources because my Social Work Intake has had to be rescheduled several times. Meant to be, it was, that I ran into Steven. Susan, do you see something here? So we went to the sanctuary (1st Floor, across from the money people) and talked. It was wonderful. And then we prayed together, and it nurtured me. This guy is definitely dialed in and particularly so in regards to the things heavy in my heart.

Back up to 6th for my Pharmacy Intake. You bring ALL of your current medications with you. This required using Craig's big backpack. Here's a picture of all the meds I have now, with ALOT on the way. Anyways my Pharmacist reviews them all, confirms that they are all correctly entered in my chart, and looks for potential interactions with all the meds I am about to start taking. I got a monster five slot per day pill box for a prize!

Then he talked to me about all the chemo drugs I am about to start. How they work, side effects, monitoring levels, and such. Pretty damn scary, but I would rather know up front. We also did some strategic planning on how and when I will get my prescriptions filled as before and after my case rate (clinical speak for conditioning through engraftment) I will have to have all prescriptions filled not at the Clinic but at a Group Health facility. So this took a little planning.

Finally, he gets out this big three-ring binder filled with pill info. There is an actual pill in a pocket, along with descriptions of dosing, what it's for, etc. Pretty crazy stuff. But there are a good number of drugs that I will be taking either to prevent things and/or manage things.

Finally, all info is exchanged and I am ready to go on my way with the instructions to come back in a day or two to pick up my medecine chart. Again, more REALLY serious business. It is around the clock dosing, so I will be getting up alot to take meds. It's nice, though, because the instructions then become incredibly clear and I just will do as told. Most patients apparently keep several alarm clocks in their apartments to go off each day at the certain time. Never thought I would need to buy alarm clocks!

I had some questions for my Pharmacist of the "sexual nature", so he scurried out to find my Primary Provider, Sarah. (Boy, did he blush!) Sarah comes in to give me the scoop on sex. It is actually a very dangerous thing during this process. Not only for me but the chemo I could expose Craig to. I'll skip the details, but even this is REALLY serious.

Then, I tried for the lst time, to change the circumstances regarding the boys' visit this weekend. Unfortunately, Craig and Brennan have both been sick and John Paul has been fighting it. The bottom-line, non-changed, final, and REALLY serious answer is that my contact will be very limited with them. They absolutely can't come in my apartment building as everyone here is immuno-compromised. They can stay at a hotel but I can't stay with them. I can't touch, hug, kiss, hold hands.....Do you hear my broken heart? I am not counting days to certain medical milestones but until I can see and be with my kids. I somehow thought that if I asked enough that I would get a different answer. Nope.

What I looked forward to the most was cuddling. And cupping my hand around the back of their heads. To giving them a bath. To holding hands. To a slumber party. To wet kisses from Brennan and trying to move in fast enough to land a kiss anywhere on John Paul's face.

As I write, Craig and I are trying to work out the details. Craig had to go in for a Nasal Swab in Spokane today so the results can be faxed to the Clinic. They want to know what virus he has recently had/been exposed to, as that affects what I may be exposed to. Damn the cold and flu season. But if I get sick, my entire transplant schedule would have to be changed. And if their germs were left anywhere and I got sick after chemo starts, the common cold can, quite literally, kill you.

When I left the Clinic with a broken heart, I was also on the mission to eat read meat for the last time for quite awhile. While you can eat it again a little further down the transplant process, it must be well done. As in pretty much charred. Why bother? I knew the entire "food thing" was coming, but hadn't known it was today.

So I took my sad self to the restaurant I look at everyday from my apartment, which is also located at the botoom of the SCCA/Fred Hutch Campus. I stuffed my sorrows with a beautiful meal. A definite recommend for Daniel's Broiler! Ceasar salad (off limits from now on: uncooked egg and unknown lettuce germs), filet mignon, medium,(undercooked meat). Impeccable service. The restaurant also treated me to creme brulee for dessert when they learned it was my last steak. I told them my next steak would also be there, when I come back for my one year anniversary follow up. Care to join me?

Back to my apartment, which is still a disaster from all the cleaning, bleaching, sterilizing, washing, etc. NEVER-ENDING job. Today I worked on the bathrooms. Everything and everywhere needs to be cleaned and bleached. So writing to you was a wonderful break. And I think I actually feel a bit better. Thanks for listening.