Good News, Bad News

Not about my condition! Good: moved to a private room-more space, more quiet. Bad: My cell phone doesn’t get a good signal. So call my room number: 415-514-5320. Feel free to call – It makes my moment!
I’ve done the significant part of my job here. I had the super chemo, then a day of rest, then my harvested stem cells were defrosted and put into me. Now I have about two weeks to get over my nausea and gain some immunity. Hopefully I’ll be germ free and, not have many side effects. My blood clot seems to be taking care of itself. The swelling is gone.
For more colorful information, I hope you’re checking out George’s blog. Thanks to anonymous who wrote the great poem as a comment to the last post. I like it, expecially the personalization. I wish I knew who you are!

August 31

A week has gone by since I had the cytoxan. I remember as the nurse was hooking up the IV, I watched her but on extra plastic clothing and mentioned to her that it looked like she was handling poision. I told her I mentioned the cytozan sounded like poison in my email and she said it is but of course it was going to help me. I was only knocked out for the day and they keep me on Dex for three days after. I didn’t fill sick at all and was wishing I could go to work. I go in everyday to take blood tests and receive the G-CSF (nueprogen) to build up my stem cells. The dex they gave me kept my energy level high and kept my White blood cells high. Once the dex wore off, my white blood cells will drop to almost zero and I have to stay away from everyone until they build back up. If I get sick right now and run any type of temperature, I call the clinic and head straight for the hospital. When they begin to rise again, I will be put on an apheresis(means to withdraw) machine that will circulate my blood through and remove the baby stem cells. This process will take 2-4 days and could take up to 6 hours. Then I will be free for several weeks while by body stabilizes for the next round of chemo. The doctor put it like this, the chemo I received the last few months was like a ruler tapping on my body. Cytoxan was like getting hit by a bat(which I believe because I definitely had a headache). Mephalan(sp?) is like a bomb. I ask you to pray that I don’t get any infections these next few days and the process for stem cell collection will go well. Pray God continues to work in my heart to be his servant and to stay in his word. He has put my doctor on my heart and I pray for her often(She reminds me of myself, she works too much). Its hard not being in the store and help people with their needs but I got to remember Gods plans are always bigger than mine and If I want to work their till retirement, He can help to heal me completely. I hope to continue to inspire those around me and help remind them that God is always the blessed controller of all things. Praise God.

Waltzing Through Summer

I dance with a unique sense of rhythm. It brings a big smile to my face when I recall our ballroom dancing instructor telling Lu, “He leads and you follow. It is your job to make him look good even if he can’t keep time.” I can assure you that despite the somewhat sexist undertone I look much better because Lu is really good at her job. We have been waltzing through this dark fungus loving wet cool summer with significant panache.
There was a fortuitous clerical error that caused last month’s blood work to be missing the MM indicators. This month’s blood work was postponed for an extra couple weeks because I didn’t want to screw up my waltz. Skipping a few beats is one of my fortes.
About a month ago a colleague chiseled a couple holes in one of my vertebrae, inflated it back up to size with a balloon and then filled it with this stuff that resembled nail polish. Then I went out for lunch and haven’t looked back since. Our mattress apparently was not the cause of my back pain – the pain was gone the next morning never to return.
School starts tomorrow so visiting the oncologist will just add an extra beat to what promises to be a highly syncopated mambo. (BTW I truly suck at quick Latin dances).
The Myeloma Beacon published a short Patient Perspective about me that references this blog so an update was in order. If this is first time you have visited my blog welcome.

And they’re off…

We leave today for San Francisco. I’ll be admitted to the 11th floor of the medical center on Sunday. The super chemo treatment will probably happen on Monday. That treatment will be about 17 minutes of whammo!
I would like to maintain contact with you. You are welcome to call my cell phone, but the hospital asks that we not have long conversations on cell phones. I’ll get my bedside phone number when I am admitted. My address is: Susan Harper, Patient; 11Long; 505 Parnassus Ave.; San Francisco, CA 94513.
I feel like I’m packing to head off to college or some other great adventure. On the other hand, I know it’s not all going to be light hearted fun, so I do have some apprehensions and dread. I know I am in good hands.

Strength in Numbers

On Thursday, my Bass Lake quilting friends (all but Ruth who is in San Diego), brought breakfast over. A nice bon voyage breakfast. I was encouraged to open a large gift bag and pulled out a beautiful blue and white quilt! 21 of my friends had been working on this quilt over the summer. I did hear whispering of “sewing kits” going around but had no idea it was about a beautiful quilt for me! It will look beautiful on my bed at UCSF. As Dotty said, “the love of God and my friends will wrap me in warmth like a quilt.”

Friday, the postman brought a box to my door. It had my cousin’s, (minister Bruce) address on the return. Inside was a lovely hand knit shawl. The shawl was dedicated during the worship service at the Lakeville (Mass) United Church of Christ. The hang tag read, “may it enfold you in our love and prayers.” I can imagine times when sitting up in bed that I will want something across my shoulders. I will think of the kind people in Massachusetts who prayed over the shawl continue to pray for me.

Another group project that has been very encouraging is my Aunt Betty’s church, Rockland Community Church, in Golden, Colorado. Every week I receive a couple of cards from their card sending ministry. I love getting kind words through the mail. This group’s dedication is impressive. I’m glad to know they’re praying for me.

Thank you to everyone who thinks of me. I am amazed when I run into people who say they have been praying for me every day. I have never before experienced this kind of attention. I know that God has lessons about prayer and dedication here for me.

Day After Wisdom Teeth Dat (WT +1)

08/28/09 Day After Wisdom Teeth Day! (WT +1)
Posted 1 hour ago
The day after i had my wisdome teeth out! Not much happened since my last post except i am in innovis hospital – again. after the extraction my temp really spiked and they heard crackling in my lungs – pneumonia. I was in the ER at about 1300 and then admitted about 1700 on Thursday. I should be going home Saturday morning – I hope.

It seems that the wisdom teeth thing went well, a little pain, more numbness but i have to be careful of what i eat.

Hope I get out Saturday!

Wisdom Teeth Day

08/27/09 Wisdom Teeth Day
Posted 1 day ago
Today is the day that I get my wisdom teeth out! I am scheduled for oral surgery at 0730 CDT. Sumner is taking me in and bringing me home (I hope). Tracy has nursing classes today and it is difficult for her to miss, Sumner on the other hand jumped at the chance to miss a half day of school. I contacted the school a couple of days ago and they were to give him the assignments he would miss so he could work on them while he waited – he might as well, all of his friends are in school so he has no one to text.

The decision to take my wisdom teeth out and extract a broken tooth was actually made in Jan/Feb 2009, just before I was diagnosed with MM. Well those plans came to a screeching halt and I never thought of it again, no pain or anything. The transplant center at Mayo wants all dental work done before you get down there and start the transplant procedures, if not they will do it there and that just adds weeks to the process and more trips back and forth. also, the dentists do not really like to do much work when a patient is on zometa I guess because of issues with the jawbone.

Oh, by the way, I am scheduled for stem cell treatment starting October 26, 2009.

Being back to work is really nice, having a good time especially lately since my energy level seems to be returning to normal and I am getting involved a little in the Bio Lab, it is fun re-reading and re-learning their SOPs and processes. I made the last of my schedued presentations last night for training in Good Documentation Practices for GCP and GLP applications. The new hires are kind of the freshman when i used to teach, some of the refresher groups are like the 7th period study hall seniors!

Med update:

Revlimed @ 25 mg/day on days 1-14 and 2 weeks off
Dexamethasone @ 40 mg every Friday
Velcade infussion with Dex on days 1, 4, 8 and 11 then 2 weeks off
Procrit every 3rd Friday

Neupogen (bad karma on this one) everyday for a week when my white blood count drops too low. worst pain I have ever felt!

Well, I have to wake Sumner up and get ready to hit the road! Thank you to everyone who continues to pray for me and my family.

Will add more later!

Through Thick and Thin

As written/transcribed by Jessica, any misplaced or lack of commas are that of the typist:
No change in the blood clot. I received a 7 day supply of blood thinning shots which makes tomorrow the halfway point. I’m hoping for some change or progress by then.
I’ve had time to finish a Pulitzer award winning book, borrowed from Maggie, called Middlesex by Jeffrey Eugenides. Out of five, I give the book a 4, because you had to invest a lot of time into it. In other words, not a light read.
I’m also taking some more time to enjoy the devotional Praying Through Cancer. The two page devotions are a nice break from the heavy read.
Our current prayer requests are for the clot to go away safely and that we can register at UCSF on Sunday as scheduled.

Update from Becky – August 24th

Its August 24th. Just got back from the Mariners game. For those of you
who didn’t know, I won tickets at SCCA last week for this game. My doctor
had scheduled my chemo to start today but I told her she needed to change
it because I was going to the game. Boy, am I glad I did. It was a great
game. Mariners beat the Oakland Athletics 3-1. Lopez and Griffy hit home
runs. The seats were amazing. They were club seats on the right field
line. Enough of the game.
Tomorrow is my first round of Chemo, cytoxan, I will be at the clinic at
7:45 until 7 or 8 at night. This is getting my body ready to harvest my
stem cells. My doctor said that it may be difficult to get enough stem
cells for two transplants because of how long I was on the previous
treatment. They have learned Revlimid makes it hard to produce enough stem
cells. I was on that since March. Pray this isn’t going to be that way for
me. That my body will bounce back quickly after the cytoxan(definitely
sounds like a poison). If my body has difficulty producing the stem cells,
the time on the machine to retrieve them may be longer which could cause
me to have transfusion during the process.
The rest of the week will involve blood tests and giving me nueprogen,
which is the G-csf, growth-cell stimulating factor. Thats all I know so
far. I won’t know the rest of my schedule until sometime during the end of
this week.
God Bless and thank all of you for the many prayers that are going up for me.
Cards and notes are great. My address is 1200 Boylston Ave. #305, Seattle,
WA 98101. Found out the fresh flowers and plants are very bad. They can
carry bacteria.


Barack’s Toro Moreno/Hamlet Moment

Watching Obama struggle with implacable resistance to his health-care initiative has been as exasperating as watching a full-length performance of Hamlet: although it has been obvious since Act I that Hamlet needs to avenge his father, he is hopelessly conflicted will not act! Is Obama willing to fight for the public plan (which should be medicare for all who want it) or not? Will he abandon