Day 55

wbc 4.7 hbg 11.1 hct 33.2 plts 137 Still no appetite.

Day 32

wbc 4.2
hbg 12.2
hct 39.3
plts 97

A first- My doctot told me to stop losing weight.





tuesday mar 22

Day 27

Feeling much better. Food is starting to taste normal again.

Day 25

First day with no nausea ! Staying awake most of the day and feeling a little stronger.

Day 21

was last Friday. wbc 4.5 hgb 11.8 hct 35.6 plts 109

Day 19

wbc 9.0
hgb 11.8
hct 36.6
plts 102

Day 16

I am very tired. Appetite is improving some.

Yesterday was day 15

My wbc went from 4.6 to 6.60.
I was sent home..

Day 7

wbc's less than 0.1 Still having nausea.

Day 5

Wbc's were 0.1. Plts 5, received tranfusion.

Day4

My wbc's are 0.4

Day0 and 1

I received my stem cells back on friday Thay was day 0 wbc was 1.2
Yesterday was day 1 and my wbc was 0.6 HBG was 7.6 and I got 2 units of blood transfused. Still having some nausea. Will write more later.

Fluids today

Went in at 7 am and was home by 2pm. Stopped by at Kroger's and picked up a few supplies to keep Bob with some food. Got me some popsicle's, hopefully they have a freezer. I have a refrigerator in my room for pop and jello. Now laundry tonight and I'm all set for for the hospital in the morning. I was jittery today but no nausea. God is good!

Chemo Day

I received my melphalan today. So far no nausea. Tomorrow I go in for fluids only and then admission to hospital on friday.

My 6 year anniversary

...of being diagnosed with mm is today.
I had double lumen PICC line insert today at Harper hospital. Tomorrow I go in for my chemo (melaphan) and lots of IV fluids. I go in at 7 am and stay until 5 or 6 pm.

Upcoming SCT

I went to Karmanos for a meeting with Dr Ayash and her staff. I will be having a PICC line inserted in my arm on Feb 15th. They don't want to use my mediport to infuse by stem cells plus I will be using more than 1 line anyways. On Feb 16 I will receive a high dose of chemo to wipe out all the remaining myeloma cells in my blood. This will also knock out my immune system. Feb 17th I go back for IV fluids and then on Feb 18th I get admitted to Karmanos and get my stem cells, which I harvested in April 2006 infused. I will be in the hospital for approximately 2weeks or until my wbc's get back to normal range. I will be allowed visitors who will have to wear a mask to enter my room. I can even have over night guests if I want : ) My next goal is to get my haircut really short before I go in and it all falls out.

Next Step

Since my last post I have finished all my pretesting for my SCT. I had an echo cardiogram, a pulmonary function test (PFT) , a chest x-ray, skeletal survey, teeth cleaning and oral exam and a bone marrow biopsy. In my youth I was 5'7". Now due to my compression fractures I am 5'3". This is pretty evident in the picture of me and Julie. We used to be almost the same height. This Wednesday I go to Karmanos to speak with Dr. Ayash. We will decide then when in Feb to do my SCT. In the meantime I am no longer receiving any Velcade or Cytoxin. I am looking forward to this new path my life is going to take. Please keep me in your prayers.

Karmanos Cancer Center

I met with Dr Ayash this morning. It has been almost 5 years since I had my stem cells harvested there (all 14 million of them) . Dr Goldman wants me to finish my transplant which I stopped due to acute kidney failure. My kidneys are now back to normal and I am now a candidate. I was told that they still have my stem cells. Karmanos has started only keeping them for 3 years. I feel like I won the lottery (not really) I told Bob that if my cells were still available I would see it as a sign to go through with the transplant. I feel so good right now. This is the ideal time to do it, while I am healthy enough to survive it. That being said, I am waiting until after the first of the year before starting with any preliminary testing.

Have a Happy Thanksgiving everyone.

Checking in..

It has been more than 2 months since my last post. I am feeling great. My labs are all doing good My serum kappa lights as of Sept 29th are now down to 71.30 and the lambda are 0.98 with a ratio of 72.76. My cr is 1.09 which is now normal for the first time since I went into renal failure back in 2006. I have been taking 15 mg ms contin in the morning and 30 mg at bedtime and this the right dosage for me. I sleep 10 or 11 hours a night and stay awake and functioning with very little discomfort all day. I am a happy camper!! Dr Goldman is going to check with Karmanos to see if they still have my stem cells which I harvested in May 2006. If they are available he wants me to consider finishing my transplant. I told him I will think about it. I recently learned of four more people I know and another young girl (23) who worked with my daughter-in-law who have died . Everyday I thank God for blessing me with more time with my family and friends.
My mother has moved from our house to my sister Sylvia's for the winter and it is working out better then we all expected. My mom will 96 in 25 days. This will be the first birthday, Thanksgiving and Christmas we will have spent with her many years. She misses her Florida home, her independence and the warm weather. But her safety is our number 1 concern.

Good report

I saw Dr Goldman today. I have taken 6 cycles of velcade, cytoxan and 4mg of decadron every other day. I am non secretory except for serum free lights. In July prior to starting my kappa free lights was 233 as of 8/18/10 it is now 86.2 This is the lowest it has been in over 2 years. We tried velcade with doxil last year and it didn't work at all. We are all very pleased with the results and as always thank God for them.
The only side effect I have had is that the velcade and my blood sugar medication interact and I have had 3 episodes of low blood sugars. I am now off my amaryl and taking lantus insulin and glucaphage. Otherwise I have had no side effects at all. My pain is now limited to my L hip and some in my ribs. The morphine dose (30mg)he had given me was too high and I slept all the time. So I have been just taking my norco which only lasts 4 hours. Today I got a reduced dose of morphine (15 mg) and hopefully it will be just right. : )
Eve

Weird Accident

A week ago last Monday evening ( June 28, I was driving down 9 Mile and crossing Telegraph. I was driving the speed limit, 45 miles a hour. I hit the new lane of Telegraph which is up 3-4 inches from the other lanes. When I hit it I had an immediate excruciating band of pain go across my back and abdomen. I went to my home at 9 Mile and... Lasher and rested on the couch. I pretty much stayed this way accept for a brief swim which relieved all my pain until I had to get out of the pool. The next night I was in so much pain that Bob and Sylvia took me to the emergency room. The only way I could stand or walk was with my walker.. Yesterday Bob washed my back in the shower and noticed I had bruises all down my spine.
He took this picture of me and then I knew why I was having so much pain. I see my doctor on Wednesday and printed a copy for him. The doctor's at the hospital couldn't find any reason for the pain but here is the proof. When I was admitted to the hospital my plts were low at 29 and when I had them done at Goldman' office after discharge they were 47.
Thank God for spell check. This message at 5:22 am and while under the influence of MS Contin contained at least 15 spelling errors before the corrections were made.
This is a picture of my spine 12 days after hitting the new lane, which I notice now has a huge bump and slow down sign. I really don't know if the sign was there last week or not but I sure didn't see it.

Change in treatment plan

Saw Dr Goldman briefly yesterday after being released from hospital for severe back/rib pain. My bmb from June 16th showed that the Revlimid definately is not working. He is going to go through my treatment plan from the beginning to now and then I will see him next week. His plan is steering towards giving me velcade and cytoxan IV's.
Because I was in the hospital the day before they cancelled my appointment and replaced me with 2 other patients. When I walked in his office and he said he couldn't see me I started crying, no I mean bawling. He came and sat down with me and gave 10 mins of his time and wrote me a prescription for 30 mg ms contin every 8 hours and gave me a kiss then sent me off. Have I told you before I love this man : )

Water therapy

I am looking forward to getting some exercise in our new pool. We should be able to use it tomorrow. We ended up buying pool steps for getting in and out of the pool. No way could I use the ladder that came with the pool. Steve will be over tomorrow to help Bob put the steps together. I am so excited!! My sister Sylvia told me if I wanted something I should get it and that is what I did.

Feeling better

I am walking again as good I was prior to last week. I took two ativan and had my bmb today at 8:30 and after Bob and I went to Kroger's. Glad we went just heard they are going on strike. I stacked up chicken breast , rib eyes and baby backed ribs. I came home and feel asleep and just woke up at 5:0o pm. The ativan really helped with the pain of the procedure along with my great doctor.
Dr Goldman will call me the results in the next week or so. I think he is on vacation next week. Yesterday my daughter and sisters can to visit. Has a great time.

```````Whats going on??``````

This is been a bad last few weeks for me. I've been having extreme pain in my l hip and r ribs. Then all of a sudden yesterday when I woke up I I could barely walk due to the pain in my l hip. Luckily it doesn't when I am standing still or sitting in a chair. I have to use a walker just to get around. I am having a bmb on Wed at 9am to see if my mm is getting worse. Please pray for me!

On a lighter note My whole family was over for a bbq and visit today. The grandkids are getting so big. Love them all!!

A gift from my grandaughter Aly

This was a writing assignment for Aly who is in the 7Th grade and turned 13 today. I cried when I read it but they were happy tears. I told her there was one mistake though. When I was diagnosed I was told 3 to 5 years not 4 to 15. I just celebrated my 5Th year anniversary on Feb 15Th. and I'm working on getting to year 15. : )

Dr's visit

I saw Dr Goldman today. My plts were up to 58 and wbc 2.5 so I will be resuming my Revlimid 15 mg hopefully tomorrow depending on delivery. I gave my doctor a card for celebrating our 5th anniversary together and I got a big hug in return. I am feeling really good and have not needed pain medications for a few weeks.

HAPPY VALENTINES DAY

I received my Zometa..

..infusion yesterday. I asked the nurse to run a blood count on me as I only had 4 more days of Revlimid. You need to have your blood work done before you can reorder the next months supply. My wbc was 2.8 (L) and my platelets were 26 (L). They normally have to transfuse platelets if they drop below 20. This means I am at risk for infection and for bleeding. Hopefully everything will increase during my week off the Revlimid. I see Dr Goldman on Thursday Feb 11th. He may have to adjust my dosage.

I continue to get occasional muscle spasms in my feet and legs and my feet burn at night. I had forgotten the wonderful side effects of this medication being off of it for 2 years. I have tried taking a Valium when I go to sleep to prevent the spasms but then I can sleep for 12 hours and nap all day. My L hip pain is almost completely gone from the radiation therapy. Believe it or not this not a complaint post. I am feeling great most of the time and blessed to be celebrating my 5th anniversary with mm in 12 more days. Plus I just celebrated my 43 rd wedding anniversary last week. Which means I don't give up easily. : )

Finished with radiation..

...this week. I am using much less pain medication then prior to treatment. The effects of the radiation continue for 4 to 6 weeks so I am hoping any pain left in my hip will be gone by then. I am resuming Revlimid today after stopping it in July 2008. I again was blessed to receive a grant from The Chronic Disease Fund (CDF). They are providing me with over $8500 to cover my copay on the Revlimid. CDF will pay all of my copay except for $20 which I am responsible for. I filled an online form on Tuesday and printed it out. I then faxed it along with verification of my income and my insurance card to the CDF. The pharmacy called yesterday and they contacted the CDF and found out I was accepted. I did a phone survey with Celgene for using the Revlimid yesterday and received my medication this morning from UPS. I can't believe how easy it was.
While writing this the pastor from Church of the King called to see how I was feeling and prayed for me. Now I feel doubly blessed. God is so good to me, knowing just the right time to send words of encouragement.

First doctors appointment of 2010

I saw Dr Goldman today and he is going to have me get radiation to my ribs for pain relief. I will probably be starting next week as soon as I finish the radiation to my L hip. I had an incident two weeks ago (Dec 23) where I couldn't breath for a few minutes and he thinks it was probably a spasm to my diaphragm. I really don't care what is was as long as it doesn't happen again. He is also ordering the Revlimid and getting me started on it as soon as possible. I was also reminded the importance of being aware of what is being done to you in the line of medications and such. The tech who drew my blood from my port was new to the procedure and had to request help. She drew my blood and went on to flush it. As she was getting ready to pull the line I asked her if the last flush was heparin and she told me "no it was saline". I told her that the final flush was supposed to be heparin so that the port would not clot. She went and got the other tech who had helped her and she said "no, it is supposed to be saline. I have been doing this for over a year" I told her "Well. I am a nurse and I have accessed ports for over 15 years and the final flush is heparin unless they changed it in the last 5 years." They got my doctor who informed them that the proper procedure was saline first and then heparin. I told them that I wasn't mad at them but they needed to know the proper procedure. I didn't even mention to her how many times she would have contaminated my line if I hadn't caught before it hit my sweater. My doctor is having an infusion nurse give his tech staff an in service on accessing ports starting today.

Starting radiation..

..therapy to my L hip tomorrow. Dr Goldman said waiting until mid January was not an option and he got me an appointment the next day. I had my meeting with the radiation doctor and got my markers done. I only needed one new tattoo since I already some radiation last July in the same area. Somehow I pulled a muscle over my L rib cage. It was excruciating whenever I moved and I ended up taking large amounts of pain medication and muscle relaxers. It started subsiding the day after Christmas.

My bone marrow biopsy showed a drop in plasma cells from 21% down to 6% which is good but some of the other results were not. I am stopping the chemo and will resume Revlimid after my radiation is completed. I continue to put my trust in Jesus and the wonderful doctor who's hands he placed me in.

Our family

My husband Bob and Me

Our son Steve & daughter-in-law Jen,our daughter Julie & son-in-law Andy

Our 7 grandchildren

Alex, Ashley, Alyssa, Jack, Max, Danielle and Dean

Checking in

My serum freelight results have not come down since starting on velcade. They have not gone up either. Dr Goldman decided to do a bone marrow biopsy to see how my myeloma was doing. I had it done yesterday. Prior to going to the hospital I took a pain pill and a ativan. This was by far the best BMB ever. I had a minimal amount of pain and it was over quickly. He is the best doctor ever in my opinion. I am going to get radiation therapy on my L hip as soon as I can be scheduled in. Due to Christmas and the other holidays it is looking like the middle of January unless there is a cancellation. I had a CT scan done Monday and it doesn't show any changes in my hips since last done in July which is good, but the pain in my L hip is almost constant. We are hoping the radiation eliminates the pain. I am praying for good news .

Half Way Done

...with my velcade/doxil infusions. I will start cycle 5 of 8 next Tuesday. Everything went well at my oncologists appointment this morning. My labs all are normal except for my low platelets (58T). He is waiting for the results of my serum free light test. It usually takes several days. We are hoping the test results are lowering but if not I will need another bone marrow biopsy.
I am feeling really good so I hope my results confirm that.
My mom is back in Florida and home after a week stay in the hospital for dehydration. I feel bad about her being there by herself but I can't go there now because of my treatments. Hope she is completely better soon.