Nov 4th-I'm home

I was released from SCCA on Oct. 30th. I will be staying at my son's house for several months which is only 5 mins. to the hospital and cancer clinic in Mt. Vernon. I am feeling very well outside of the times fatigue hits me then I go take a nap. I usually last about 4 hours. I can go along not watching the time then all of a sudden it hits me and I know it is time to stop. My blood counts are all in normal ranges. It will take about a year for my immune system to be back to normal. The nurses explained the importance keeping my hands washed and be careful not to be touching my face much. I stay away from crowds which means I will still have to miss church for awhile. I did go to bible study fellowship several times and during the lecture time I sat in the back away from everyone.
The last week in Seattle the clinic keep me busy with appts. with various doctors on my team and attending a long term care class. Basically, I can't isolate myself and if someone in my home is sick, we just stay apart from each other. We have handy wipes to wipe things done often so germs aren't spread. I even put paper towels in the bathroom because I can't share hand towels. I plan on staying healthy.
I start my maintenance therapy on Dec. 16th. It will involve a 28th day cycle of Velcade and vorinostat. Velcade is the same drug I was given when I was first diagnosed and I did real well with it. It will be given to me the 2nd and 5th days of the cycle. I will miss my pick lines when they give me that. I will have to be hooked up to an IV for treatment. For those who din not see me I had a pick line in my upper right arm for 10 months. It was removed in Seattle and I was given a Hickman line in my chest. That was removed on Oct 29th.
Vorinostat is a pill that I will take for the first 14 days of the cycle. It is used for other types of bone marrow cancers but not in post transplant patients for myeloma. It is a protein inhibitor. I will be part of a research study of about 30 post transplant myeloma patients to see what effects this drug combination has on people after a autologous transplant. They want to see if by using this as a maintenance therapy if it will keep the cancer from coming back and increase the survival rate.
This last paragraph reminds me that when I saw my doctor at by release appt. and he is telling me all about the chances of this cancer coming back or that I am at high risk of getting other cancers, I told him I have a powerful almighty God who will heal me completely. I was impressed with his reaction. He actually agreed it could happen.
This blog is getting long time for me to go. Pray that I will do well with my maintenance therapy. Also, notice the start date of Dec 16. I have to go to Seattle for 2 and a half weeks. This is through Christmas. My name is on top of the list to move up sooner. I am suppose to go to Oregon this Christmas for my dad's 75th birthday. We planned a big party on Dec. 27th plus I got a call this last weekend that we are having Christmas dinner and gift exchange at my parents house. Pray there is a cancellation so my treatment won't interfere with these times.
God bless, Becky

Oct. 15 (day 15 and still counting

I was just given the weekend off from the clinic. I asked if they would
let me go home but it was a definite No! My nuetrophils are still way to
low to be around anyone. The nurse told me to stay in my nice little apt.
and close to the clinic.
I have had an interesting week. Sun. (day 11) I saw a weekend doctor and
he told me I looked so good. Teasingly, he told me not to tell anyone I
was given melphalan because I looked too good. Then, Mon (day 12) I saw my
regular doctor and the new attending research doctor who told me he heard
how while I was doing and I comment how young he looked. It got very quiet
and the doctors and nurse were just staring at me. I asked why they were
staring at me and my doctor said there was nothing else he could do for
me. The labs haven't come back yet so we couldn't look at them. After the
doctors left, the nurse said that I am doing so well they didn't have
anything to discuss with me. Normally, people are so sick they have some
plan of action. On Tues (day 12), I was sent to the triage nurse to get my
vitals and sent home. They were too busy seeing sick people. I am just too
healthy for them. Then today as I said earlier, I free for the weekend.
They were teasing me about if I came crawling in on Monday, they will know
I didn't follow protocol and was goofing off this weekend.
There is a chance I can head home in about 2 weeks if my nuetrophils reach
.5. I am at .11 now.
God has given me an amazing body. I recoup from illnesses usually pretty
quickly plus with all the prayers I know are going up for me I am looking
forward to going into complete remission. Praise God
Love, Becky

Oct 10 - Day 10 after transplant

I did not realize I haven't posted anything for awhile. I have been sleeping a lot and I did not have very much of energy. Battling with diarrhea and some vomiting. I been able to keep my vomiting under control with anti-nausea pills. I have IV fluids at home and needed a red blood transfusion on day 7. I am medically called nuetraphenic right now. It means I have no immune system, practically no white blood cells to fight any infection. I am at .12 units (normal range is 4.5-10) I dropped to .03 on day 7 and .04 and day 8. My doctor comes in on day 9 and said congratulations your white blood cells or up 3x. I laughed at him considering I was so low. I still have a long ways to go. The only concern now is my platelet count is down to 16 (normal range is 150+) If I go in today and it has dropped to 10 I will need a platelet transfusion. Platelet cells are those cells that help clot your blood. So very important I don't get any cuts right now.
The best thing that has happen so far is that I haven't had any fevers so I have been able to stay out of the hospital. My doctor says because I haven't become inpatient I am what they called a statistical anomaly.
I feel well today. I will see the doctor again in about an hour and a half. If my counts continue to rise everything will be up hill from this point on. Looking forward to keeping past the need to sleep so much. I believe it affected me last night because I woke up wide awake at 1:45. I checked my email and went on facebook (only because my nephew added me as a friend and I had to confirm).
I believe many prayers are being answered. I have not gotten a fever and I am looking forward to a speedy recovery if my counts are on the rise. Our God is so awesome. God bless you all.
Love, Becky

Sept. 29th

I settled in Seattle again. I spent a week and a half visiting family and friends. Begun my transplant process on Sept. 28th. I was given melphalan (the bomb chemo) and lots of IV fluids afterward. During the whole process that started at 9 am and lasted until 2 pm and was required to suck on ice chips. They have found that keeping your mouth cold while given the melphalan will help the mouth and throat sores not to be so severe.
Today is -1 day before transplant and tomorrow will be 0 day. Rebirth of my bone marrow. Melphalan wipes out all new growth cells in your body which means it wiped out the cells in the bone marrow as well as new cells growing in my mouth, throat, stomach, hair,etc. Tonight I am doing well. I had a bout with nausea last night and took some extra anti-nausea pills and laid down for awhile. After the pills took effect, I was able to eat dinner.
The nurse says it will take until about Friday before the worse to hit. Need to watch my temp constantly because any fever will put me into the hospital immediately.
Continue to pray for speedy recovery with little or no side effects.
God bless you all and thank you so much for the prayers. Becky

Sep 18th

It has been over two weeks since I last updated. I saw my doctor on Sept. 9th and all my blood counts were pretty much normal. They scheduled my transplant on Sept. 30th which puts my chemo (bomb) on Sept. 28th. I go back to see my doctors on Sept. 23rd for last minute consultation. I have to see the dentist again on Sept. 22nd to make sure my teeth are very clean.

I was able to go to the intro class for BSF (Bible Study Fellowship) on Sept. 15th . I am so excited to start BSF again. They are going through the book of John this year. I will also be going to Oregon on the 20th and 21st to visit with all the managers for Tree of Life. I don't have to go and since I miss everyone and only get to see them twice a year as it is I am really excited to go. Sunday night is dinner and fellowship and Monday morning I will only stay till lunch. I hoping to see how my store did last year for sales since our fiscal year ends in July. Tough year last year with all the snow closures in December and the slow economy. Looking forward to a better year this year with the 2010 Olympics coming up in February. I hope to be back to work by then God willing. It all depends on how my body responses to the transplant.

Believe it or not my hair decided to finally fall out. I am completely bald now. I woke up Sunday morning and noticed quite a bit a hair on my pillow. Took a shower that night and washed my hair and I had a handful after rubbing my hand across it once. Strange sight. By Tuesday it was pretty much bald.

I had the opportunity to attend an 8th grade graduation meeting with Josh's school and open house this week. I guess they have an official skip day the day before graduation and throughout the school year they do fund raisers for the cost of the trip and cost of graduation. I still need to put in volunteer time sometime this year so I decided to apply for substitute teaching and volunteer to substitute a couple of times this next year. If my health is up to it, I hope to help with the winter trip which will be in January.

I just got a call from volunteer services a moment ago and my name was drawn for tickets to any one of the Mariners games this weekend. They are playing the Yankees. My sister-in-law came up this week to visit and she is a fanatic for the Mariners like me. I couldn't believe I won tickets again. So, we are going to really enjoy ourselves.

Pray for my health as I continue to work to stay healthy before my transplant. 10 days to chemotherapy. Pray for my trip to Oregon. Looking forward to seeing everyone in Eugene.

Thank God for the many blessings he has blessed me with this last month. Love you all.

Becky

September 7th

I am sitting her at SCCA this morning. Something is wrong with the internet in my apartment but I get free access here at the clinic and I couldn't wait to update you all. As I mentioned, my cd-34s were at a count of 65 unexpected by my doctors. I started apheresis on Friday(that is the machine that collects my stem cells). Friday night I got a call informing me that I just collect over 20 billion stem cells. I only needed to get 10 billion for two transplants. My doctor said it would be difficult to get that many collected let alone be able to collect it all in one day.

God is our miracle worker. I still sit here amazed at what my body has done in healing itself. I praise God continually for the strength I have and the way I keep bouncing back. Since the doctors keep telling me to not expect much and then I amazingly exceed those expectations, we know it is an act of God. He is the miracle worker. I can't wait to glorify God when I am completely healed when this stem cell process is done.

My doctor wants to put me on a maintenance therapy after the transplant convinced my cancer will be back in less than a year(normal for my type of myeloma). I researched the medicine she suggests which is a histone, type of protein our body normally uses. It supposedly helps to keep the cancer cells from reproducing and it doesn't have any serious side effects and it is just a pill that I take 14 out of 28 days plus velcade 2x a month. Pray for wisdom.

Sept 3rd update

I am sitting totally amazed at what happen today. Just a quick overview of
what my nurse keeps me updated on. Last Fri by White blood cell counts
were over 20.0. Norms run between 4.3-10.0. That was because the steriod
Dex was giving my body lots of energy right after chemo from what I
figured. Sat. I dropped to 17.6. Here is the rest of the week 2.9, .65,
.25, .39. The day I was .25 I had no energy level. Slept most of the day.
Melanie was starting to get sick and immediately left the house afraid she
would get me sick. I had no neutophils (thats the stuff in your body that
fights infection). 0, none nada. You get the point. I called my oldest son
who by the grace of God came home from his summer job last Thurs and was
able to come help me. Of course, I asked the nurse when she thought I
might start on the machine. She said maybe a couple of days or maybe as
far out as Labor Day. No real encouragement. Just go with the flow. (I
never lost any hair either). So, yesterday she said if my wbc goes over
1.0 then they will do a cd-34 which will give a indication how many of
those little itty bitty baby stem cells are floating around in my blood. Ok
fine. Don't expect it to be much more that 10 and I will still get my cell
growth stimulating drug. Surprisingly by white blood cell count jumped to
1.67. Large jump from .39. So, back down to the labs to give more blood. I
told the technician they must like my blood they sent me down again. 4
hours later I should be getting a phone call informing me of my cd-34
count. If it doesn't make it to 10, we will wait another day. Well, after
being cooped up for two entire days. I got passes for my son and I to go to
the Seattle aquariam(kids are back to school in Seattle). Trick is to get
down there on the bus and not being around crowds. Its a Thurs. We need
get through Pike place market. Hopefully, there won't be much of a crowd
around 1 to 2. Wrong. I am suppose keep a ten foot bubble around me. We or
shall I said I looked funny. We stood in the middle of the street away from
everybody. I have my face cover with my coat waiting for an opening to the
downstairs. Once there was we made a beeline through the opening. Whew, no
crowds after that. Spent a wonderful day at the aquariam and decided to go
to the Old Spaghetti factory after that. Before we left the aquariam, my
nurse managed to call my son, John, I never left his phone #. My phone had
gone out of service under the dome and she must of tried to call me then.
I was talking to Melanie that is why I knew I lost reception. I talked to
the nurse and she said good news we can start on the machine tomorrow be
in at ll. Here is what is so amazing. My cd-34 count was 65. They were not
expecting to make 10 let alone more than 20. My doctor keeps saying that
because of the type of drugs I was on it was going to be difficult to even
get enough stem cells for two transplants. She even made be undo my signature on
research that could use my extra stem cells I would possibly have because I won't
have enough .
Isn't God totally awesome. My body has never been the norm. In fact, she
told me I needed to go get some pain releivers because as the cells are
trying to crowd out of my bone marrow I would be in a lot of pain. It
would help me sleep. When I went in today, she asked how my pain was and
how did I sleep. I looked at her dumpfounded. I felt something was
happening. My back was weak and my left thigh was tender. What about my
skull. Fine. Scale of 1-10. Maybe .5. She even told me that if the pain
gets any worse some people have to even get morphine because they can't
handle it. Its ok, to cry and ask for morphine if I needed. And, what do I
do today. Walk all around the aquariam. Walk 13 blocks to the spaghetti
factory, then up hill several blocks to the bus. I have not been feeling
any pain. Relaxed tonight watching a movie and feeling great so I decided
to email and update my blogspot.
I know I'm crazy but you know life needs to be enjoyed to its fullest. God
has everything under control. Besides, I am going to be completely healed
and live to 100 years old. Can't keep me down. (p.s. Mark and Debra I may
still come to the meeting if I'm not to busy).
God Bless you all and love you all. Becky