3 Months Old – Post Stem Cell Transplant

Playing with my baldnessTo all my family and friends and anyone interested in Multiple Myeloma!

Its been a while since I’ve been able to post, and sooooo much has happened.  I’m not sure where to start :)!

Well, I was able to be discharged from Duke’s ABMT Clinic on Day 15!!!  I had en-grafted, WBC, RBC and platelets were all high enough for me to go home.  It would take up to  90 days post transplant for my entire immune system to be back online, but I was able to go home with some safety precautions.  I was still very sick from the chemo and was on several different anti-nausea medications to manage it, but for me nothing seemed to work for long.  My taste buds were not working, everything had a strange unpleasant taste.  My sense of smell was all jacked up!  There were times I could cry because I couldn’t escape the “smell” lol, I can laugh now but God knows it was almost unbearable.  You know part of being able to eat and enjoy food is the ability to smell and taste your food.  So you probably guessed it, I barely ate for weeks!  But, every week I saw small improvements.  I am now able to eat more items and drink more fluids.  My taste buds are doing better every day, its not 100% yet but I’m learning to be patient with myself and my recovery.  I also had to deal with the effects of chemo on my brain, they call it chemo brain, sometimes its funny and other times it is very frustrating.  I’ve found that taking flaxseed oil every day has helped greatly.

I’m at an odd place in my recovery.  Most of the fog in my brain from the chemo has lifted, the nausea is greatly improved, my hair is trying to grow back, the discoloration of my skin is fading.  Most people look me and think, Wow, how good I look for a transplant patient.  I told a friend today, that looks can be deceiving!  I’m doing physical therapy 2x a week, voice therapy once a week and massage therapy every week.  The impact of chemo was great, especially on my muscles, my energy, my focus.  Don’t get me wrong, I have many days that are better now, but I have to pace myself, relearn my body.  I’ve been told that it can take up to 1 year to fully feel your “new normal” and to stop feeling the effects of fatigue.  I still need help with little things, like food shopping, carrying bags, some house work, but God is still good!!!  Not sure when I will be able to return to work yet, but I am now starting to think about it.  This whole experience now has me thinking of other ways to make a living, but I’ve got to find a way to give back.  A way to help and extend another life.  Life if so precious and beautiful, full of wonder, I thank God everyday for my beautiful life.

I was told last week by my physician, that I have not achieved remission yet, but I am much closer than I was.  My M-spike is now 0.20 – almost zero!!!  It is recommended that I should do some post transplant maintenance – subq Velcade injections twice a month.  I can live with that :), and it is my prayer and belief that in a few months I will achieve complete remission!

3 John 1:2 – “Beloved, I wish above all things that thou mayest prosper and be in health, even as they soul prosper”  – We Are His Beloved!!!!

 

5 days post stem cell transplant

I’m back online, its been a very very hard journey but I can truly say that God is faithful and does answer prayers!  :)

I received my second high dose chemo on Wednesday, March 26, 2014 it was called Melphalan.  This particular chemo is called the knock out, it wipes all cancer cells but also your entire immune system and plays havoc on your entire digestive track.  On March 27, 2014, I received my stem cell transplant its considered day 0 and the beginning of new life.  The transplant was hard due to the preservatives needed to keep your stem cells viable.  It was the hardest thing I’ve ever had to do and scary.  But the care I have received from the Duke Adult Bone Marrow Transplant clinic is like no other, they not only know their stuff but they are consistently kind, caring and professional.  I thank God Almighty for placing me where I needed to be.  I no longer cry thinking about why me or why now.  After relocating to NC within 3 months of starting a new job, the journey began.  My God what a journey!  I have a expected outcome from all of this!  One transplant and done, living a full life enjoying my loved ones with many years in front of me!  I am excited, grateful and over flowing with love!  Stay connected.

P.s. Yvie Bears are being mailed this week.  My recovery has been difficult and I was not able to stay on top of the shipping but its being taken care of now!  Thank you Gina from Gann Memorial plush toys for making it all happen.  Love you!

 

The Journey begins for Real – Today was the Hickman Cath placement

Today I was scheduled to have Hickman Cath placement to be used for chemo and stem cell collection.  The catheter is used because it has a higher flow rate then a port.  But before I left my house this morning I received lots of text messages and brief phone calls from many friends and family sending me lots of love and support.  As I showered and dressed this morning I listened to praise and worship music, dancing and singing giving God all the praise; I praised Him until my fear was gone!  It was the best way to start this journey :)!  My sister Annette went with me this morning and took very good care of me, her patience and love was such a comfort.  After the placement of the Hickman they kept me in recovery a little longer to monitor my heart rate and vital signs.   The nurses and physicians were great.  They were caring, funny and professional from start to finish.  Tomorrow I am scheduled to get my first high dose IV chemo, about 6,000 mg of Cytoxan along with lots of IV fluids, I am a little scared but I know that God is with me and all will be well!  His word says He will never leave nor forsake me and I take Him at his Word!

Me & My Sister before Hickman placement

Thank you!

I want to take a moment to say thank you to all the people who have made donations and purchased the Y’vie Bear.  To those that have purchased the bear, it will take approximately 3 to 4 weeks to receive Y’vie.  By the time you receive your bear, I will be in the middle of my transplant process in March, so please feel free to post me a message when you receive your Y’vie Bear!  I look forward to sharing the journey with you.  Yvette :)

Moving Forward

Since my last post, I have attended the new patient class that Duke requires all stem cell transplant patients to attend as well as the caregivers/family members.  It was very informative and I think it can really help family and caregivers to better understand how serious this is and how important it is to keep me safe from infection.  I realize that when my family sees me, they see someone who doesn’t look sick, who still has a head full of hair, hair that actually continued to grow while on my initial chemo treatments.  I have days where I feel fatigued and rest more, but I don’t usually complain.  When my white cells drop to 1.9, no one can look at me and see the risk of being immuno-suppressed.  So as a result, I know its hard for them to accept what I am going through.  Well anyway, during the class, it was stated that we would all lose our hair, temporarily.  So after class I went to the Duke Cancer Center, tried on different wigs, took pictures, picked out scarves, head wraps and jewelry!!!  It was fun and liberating all at the same time.  My family and friends will video record shaving my head when the time comes, as well as the heads of my family who have decided to shave their heads in support of me.  What love!  In spite of my circumstance, I am in a place of continual gratitude and thankfulness, I thank God every chance I get for the wonderful life I have and the wonderful people in my life!

Update on my treatment for Multiple Myeloma

I have completed 5 cycles of low dose chemo with my primary oncologist before my care was turned over to Duke Adult Bone Marrow Transplant Clinic.  During those 5 cycles my chemo treatment protocol was:  Velcade (subcutaneous injections- once a week for 2 weeks, one week off), Cytoxan (oral 300mg once a week) and Dexamethasone 10mg/2 days a week, Zofran for nausea when need.

Throughout my initial treatment I had very little side effects until about my 3rd cycle.  At times I had bouts of nausea and my white cells started dropping very low, some times I needed Neupogen injections for neutropenia.   After my immune system became compromised I had to to stop working, which was for the best.  I had hoped that I could continue to work up until the transplant, lol, how silly of me!  But I tried!  The initial treatment is designed to place you in remission prior to your Stem Cell Transplant preparation and actual transplant.  I would like to share with everyone what my preparation schedule looks like, as soon as I can figure out how to upload it I will.  Duke gave me my schedule/calendar on February 6, 2014, after completing many labs and test.   My test included:  18 tubes of blood, chest xray, pulmonary function test, ekg, echo and bone survey!  IT was a long day….  After I got home and reviewed my schedule again, I realized just how tremendous an untaking it is, I felt overwhelmed and cried…. and cried…. and cried.  Finally, with the grace of God I stopped and decided to get back to taking control of the things that I can and enjoying life!

 

Treatment day

Thursday’s are treatment days for me and usually long and exhausting, but today has been a good day.  I’m tired but I’m so excited about how my treatment is progressing.  I will follow up shortly to share what my treatment plan is and how it leads up to the big Stem Cell Transplant!