Carl and I recently returned from NIH on the East Coast. The
highlight is always being able to have dinner with my cousin Sam. This time we
managed to also squeeze in a pancake breakfast. He works for NASA and has
decided to retire in a year or two to Arizona. Sam, Carl, and I are very close,
so it will be wonderful having more family close by. The three of us took some
time to go to the Hungarian Festival for a little R&R. We saw George at the
hotel (one of my blood brothers, who started the trial the same day). We missed
seeing Matt. :-(
I cannot believe it has been a year since I entered the
clinical trial with the experimental drug ibrutinib. My visit to NIH began with
donating 17 viles of blood to Count Dracula, the lab technician. The good news
is that my white blood count has decreased from 35,000 to a little over 29,000
(approximately 4,000 to 10,000 is normal). This is where I was five months
after I was diagnosed. I am moving slowly, but headed in the right direction. I
would be thrilled to be normalized.
I was then pumped full of radioactive juice so that my
insides could be viewed by the medical team. My lymph nodes have not increased
and I have remained the same since last January. This is also good news.
If you recall, last time I had a bone marrow biopsy I was
wheeled off in a wheel chair. I could not walk due to the fact that I was
stabbed five times with the Lidocaine, because my nerves kept feeling the
needle. My bone marrow biopsy went better this time. Thank God for that one. I
walked off the operating table on my own. I will not get the results of the
bone marrow biopsy for several weeks. As soon as I do, I will post the results.
There are only a few side effects I reported.
1. The first is that the fatigue has returned the past few months. Rats!
Sometimes the fatigue is more like complete exhaustion. Yesterday I took a 4.5
hour nap. I am hoping this will ease up. The medical team said they may have to
take me off the drug for several months, if this continues. This freaks me out
a little. I am keeping a journal for them.
2. The second side effect is my brittle nails. I have always
worked with my hands, so I never had the luxury of having girlie–girl nails, so
that is not a big thing for me. It is just a little annoying. The doctors suggested I take biotin.
3. The third side effect is sort of a silver lining one. My
hair has changed texture. It used to be straight with no body. Now it has curl
and body. I can’t wear a bob cut without using a flat iron! Amazing!
Apparently, I am not the only one who has this side effect. I am not
complaining about this one. LOL.
I have also signed up for another clinical study to help Dr.
Richard Childs and Dr. Adrian Wiestner at NIH. This just involves donating my
blood, bone marrow, tissue, etc. for further genetic research. This will help
me get more scientific information to help me understand my situation.
I just got through reading Dr. Wiestner’s paper on the
clinical study that was presented at a conference and found out that two people
in our trial have died, but thankfully not from the experimental cancer treatment.
Looks like they had problems with infections. I can’t let things like that get
me down. I don’t have time to wallow in the mire and waste my time
belly-aching.
My family and friends keep me excited about living. My
son-in-law Steve is in Africa now and will be bringing home Ian, a new son. He
just turned two years old and he is blind. I am excited about meeting him.
My son Rocky just completed another marathon in Portland.
That makes two marathons in four weeks. Crazy! My daughter-in-law Elizabeth,
who is five months pregnant, walked a total of eight miles to meet him at his
milestones. What animals! It puts a smile on my face.
What a strength you are Dr La Verne, keep going, and continue inspiring. I am only 12 months into my CLL journey and was not even 40 years old when diagnosed.
ReplyDelete"It is not what we are dealt with that is important,
But how we play it."
Exactly!
Dear Fiona:
DeleteWhen I was first dignosed, Dr. Chadha, my GP in West Lafayette, said to me,"It is not the cards we are dealt in life, it is how we play them that makes all the difference." How wonderful that you have the same saying. It has helped me through the more difficult times. --LV
LaVerne, your story is so inspiring. Are you ever through New Mexico? I miss you and our discussions of policy and practice. Are you able to keep a proverbial toe in higher ed during this time?
ReplyDeleteI miss you too, Paula. I often chuckle about some of our adventures in our doctoral studies at the U of A. I may have to visit you in New Mexico some time. I am still in touch with many of my Idea Gurus (students) from Purdue University and Arizona State University, as well as a number of the professors.
DeleteI have now read most of your posts since meeting you at NIH. Congratulations to you and the NIH team. It is all such good news. My good news is that I am today one WEEK on Ibrutinib. I got the phone call six weeks ago and the tears of joy began to fall. After all the research and applications I had given in to the fact that it would be chemo for me so the phone call was a welcomed surprise. It was the longest five weeks of my life waiting for that first dose as my WBC climbed to 275. Perhaps we will see you around Phoenix this October. Or again at NIH. (I will be there this coming Tuesday and Wednesday. ). Keep in touch. And send me your email ads. ~Fran
ReplyDeleteFran, I am so happy for you. I will be at NIH the first week of October, but I would love to see you when you are in Phoenix, We can do the happy dance together!
Delete