From my point of view

I know, I should update more often, sorry. Frankly I have been so overwhelmed with everything that when I think about it too much I just start crying. Christmas week was one spent in the hospital. Amber had her bone marrow transplant on Christmas eve. Jordan, her fiance had a "cold sore" and was not there all week.... I think he just needed the time off. It did not go unnoticed by her that he was not there the day of her transplant. Jesse worked that day too. It was Amber and I alone in the hospital on a BIG day. They call transplant day your 2nd birthday. Let me explain for a second the transplant. It is not a surgery. It is an infusion that hangs and goes right into her hickman. Her hickman placement was a surgery, yes. The transplant is quite non-invasive. It looked like thick, red blood. She did pretty well. About an hour into the infusion a couple of her nurses came in to ask Sheryl if she needed any help. Then they said, "okay, we really just came to see Amb...

Today I told a girl a story from my past. Before my update I'm going to hopefully give you something to laugh at. As a child I was so deathly afraid of outhouses that I refused to even enter into one. Really, I don't know anyone that likes an out house other then the people at the "Honey bucket" factory. My fear was extreme. I recall going to "Bam berries hot springs" and having my Mother catch me squatting behind a bush next to the outhouse. Fast forward a few years. I was nineteen years old. My sister a friend and I decide to go to the rose festival. (back when it was free and not gated) We went in the afternoon and watched live music while sitting in the grass. We also had the brilliant idea to buy a bottle of rum... Each of us purchased a fountain soda, drank them half way then topped them off with rum. It took about an hour then there was no more holding it. I had to pee. Badly. There was a line of honey buckets for all the festival goers. Well I w...

The only sound in the room is the IV pump and the ringing in my ears. The light is just a little green light flashing with the words MAINTENANCE FLUID scrolling like a marquee. Every once and a while I hear my husband take a deep breath. He's not snoring. That's rare. I've been having chest pains for three days. Today they are better then two nights ago. Two nights ago I thought my sternum was broken. Feels like heart problems again from my bleeding disorder. I'm ignoring them because I want to be here for my daughter. I don't want her alone. I don't want her with someone that may be negative, bring drama, or make her feel bad because they have to be here too. I know this is all going to catch up with me but, fuck it, walk a mile in my shoes! Don't stand there throwing empty suggestions. My doctor said my body is full of the stress hormone cortisol. Hopefully exercising will help but the stress is making my belly swell, ache, burn and turn. There's...

I make birthday resolutions. That's MY new year so I figure its the best time. I usually take some time to reflect on the year. I do suggest everyone does this. Weekly monthly and yearly. Goals can not be achieved all at once. "If your going to eat an elephant, you have to do it one bite at a time." So far this year my health both physical and mental were my goals. Things like getting the care I need for my digestive problems, seeing a counselor, and such I feel pretty on top of. I'm even exercising and doing yoga at home. Currently with my house being rearranged the way it has. (Ambers stuff in our bedroom, the living room dining, room, and kitchen are Jesse and I's studio apartment.) I literally don't have a wall that is free. I lean on the door for stretches and so on. I've added drinking a lot of water. That really helps. My soap keeps my skin clear but the water really helps it stay healthy looking. I forgot how dehydrated a person can get. Add on ...

Forgive any errors please I'm (again) posting from my phone. I'm trying to get used to it. It's been really nice having her home this past week. Her marrow came back with only 3% blasts and they consider 5% full remission. They can't even tell if that 3% is bad! Awesome. We're all quite thrilled to know she kicked out healthy cells so quickly. They said she could go straight to transplant. IF they can get everything scheduled and ready quickly. We've enjoyed the week. Once Amber felt like eating we fed her whatever she wanted. (Sushi was high on the list.) I received a package in the mail from childhood friends. I missed the delivery so Jesse an I had to drive to the post office and pick it up. I'd not been to this particular post office yet. It was basically a package pick up place. I cried my eyes out reading all the well wishes and even a special song written for Amber. It made me feel so special to know how much my friends care and how much they pa...

Worry is not a good enough word. Typing is not helping. I used to want to reach out and now I just recoil. Nothing is within my control! nothing. I'm an admitted "control freak" or, I was. I used to be. That was the only way I could feel "safe". If I'm in charge, then nothing can go wrong. If I'm in charge, then no one can hurt me. I think a lot of people feel the same way. It's self preservation to be selfish. It's self preservation to be a control freak. Here I am now with no tools to fix these problems. Here I am with no more strength to carry them. Oh but they are there. They are breaking not just my back, but every bone in my body. I feel strange. I feel angry and sad all at once. I sometimes question things that I already know the answer to just to make myself feel better. Lately when someone asks me "Is everything okay?" I just say "No" No everything is NOT okay, but you know that, so stop asking. Yesterday ...

Jesse and I are home now... It's 12:20am Jordan is with Amber at DCH It was difficult to leave. Jesse and I have been running on adrenalin fumes. I think our first meal today was at 4pm. My allergies are on high, they do this in the fall, on top of that were trying to clean an rearrange our house. We're giving them the bedroom and turning the front of the house into a studio. (granted she'll be in the hospital for a month at a time with just 5 day breaks here and there) Trying to focus on the positives. The straight talking, informative, and caring nurse we love, was her nurse today. This is the woman that was with us when Amber first lost her hair. It was a tough day. I'm glad she was there. She was the one who taught me all about reading blood work and what being neutropenic meant. Today she was teaching all of us about leukemia. It's a different animal. She's got a lot of it in her marrow. They checked her spinal fluid today and also put a chemothera...

So Here we are again. This time the demon is called AML Leukemia. They say it's a side effect of all the chemotherapy she got before. This October we'll celebrate four years since her last round of chemo. Or we thought we would. She is a grown up woman. Getting engaged and talking of starting a family. Her wonderful boyfriend just asked her father for permission to marry her. He wants her dreams of motherhood to come true. Now talk is of us moving back in together so we can take care of her. I'm watching my own husband cry-sob is more like it None of us expected this! She had a sore throat a couple weeks ago. Antibiotics weren't doing a thing. By last Wednesday (a week ago) we knew something was awry when the doc said she needed platelets. Back to the oncology clinic she went on Thursday for blood work and CBC's, that day the doc said "I think I know why." Friday they took bone marrow. We knew it would be scary and waiting till today has been tortu...

What a great week night trip. My husband is a bartender and I'm a home crafter. So weekDAYS are our weekends. It makes for pretty awesome camp sites, no lines at the coffee drive through at 1:00pm and patio seating in the shade waiting on the bay! We left Portland at about two pm and arrived at the Tillamook Fred Meyer just over an hour later. Grabbed some cold beers then headed north on 101 to Bar View Jetty Campground. No reservations, got a spot that only had some trees separating us from the windy beach. (Note: if you don't like sand then this is not the place for you!) I surf so I'm pretty used to the sand. I LOVE how much softer it is to sleep on then most other earthen substances ie dirt clods, rocks, bunches of roots, even certain grasses are not as forgiving as sand. (I still bring a mat but we've all forgotten once in a while.) The campground is nice; gravel roadways, well-marked places, trees, fire pits with a grill, water spigots here and there. Oh, and b...