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

Weekend on the mountain

Mark has been filling pretty good lately. He was able to go up on the mountain with his family for a weekend. The Allred family heads up there every year about this time. He was able to relax and get some family time in and a little fishing to.
Mark really enjoys all the time on the mountain he can get. It was nice to get everybody up there this year.
Mark still is getting his valcaide and dex every Wednesday up to the Huntsman. This will continue for about a year. All lab work is still looking good. He is getting more energy and strength back every day.

Here are a few pictures of our weekend on the mountain

Mark blowing bubbles for Easton
The Allred line up
Mark showing Brooke how to hold her pole
well that worked
Mark showing Jax how to play horse shoes

A little entertainment, Easton singing Muddy waters
Shane on the top of the mountain

Update from Becky – August 19, 2009

Well I saw my doctor today. Here is wants up. Thursday I will have the
Hickman placed at the University of Washington Hospital. I will definitely
be out of it that day. Tuesday we will start the cytoxin, chemo that will
wipe out by body and Wednesday they will give me G-something something to
enchance the growth of my stem cells. The biggest concern she has is that
I may have difficulty in getting the 10 million stem cells needed for two
transplants since I was receiving treatment for so long. Normally they try
to get you in sooner after treatment begins like she wanted me in last
Jan. or Feb. but that wasn’t possible. I may need more transfusions
because they will probably have to take more blood out of me. So, for
about 2 weeks I will go in have a shot of nuepragen, another stem cell
enhancement, and be hooked up to a machine that will take out my blood
which through the process will take my stem cells and return the left over
blood to me. If my stem cells are low, I will have to stay on the machine
longer than most and this is where I could lose too much blood and may
need the transfusions. The good news is the myeloma cells dropped in my
bone marrow down to .9% from the 80-90% at diagnosis. Bad news is that
they found more bone lesions from the MRI. I asked if my hips were part of
that because I have lots of pain in my hips. At night, in bed I have to
constantly roll over until I don’t feel any pain. Ron always tells me I
waddle which I knew because my hips hurt. They found lesions in my hips,
on my L2 lumber, and my neck along with the original ones on my skull and
right femur. So, I was definitely stage 3 at diagnosis. The reason for the
transplant is to stop the growth of these lesions and wipe out the myeloma

My prayer is that they will get plenty of stem cells quickly with little
problems and I don’t need any transfusions. The treatment will wipe out
the rest of the myeloma cells and stop the growth of these lesions and I
will bounce back quickly.

Remember the joy of the Lord is my strength. God will be gloried as He
gives the doctors wisdom in all they do. God be praised. Amen

God Bless and love you all for your constant prayer and concerns.