Dear Friends and Family,
I apologize for not keeping you more updated as to my health status. However, life has been very full and this is the last thing that I have wanted to focus on. But now as things are beginning to develop, I feel that I need to take you back a little and let you know the status of my health. I will do that by including two update letters about my health. One was written on 30 October 2013 and the other is written today, 21 November 2013.
30 October 2013
I went to the doctor today and had what will probably be my
last infusion of the drug “Avastin” which is very sad news to me. I have been receiving this drug every 3 week
for almost 2 years. I was told that I
could be on this drug indefinitely, until the cancer came back. I guess that time has finally come.
Here is a quick recap of my medical situation. There is a blood test that they use as a
tumor marker to determine if you have cancer.
It is called a CA-125. Normal
range is 0-35. When I was first diagnosed
with Ovarian Cancer stage IV in September of 2011, my CA-125 was 687. On October 3, 2011 I then had a debulking surgery which included
a radical hysterectomy, spleenectomy, 5 ½ “ of my bowels, 2 ½ “ of my
diaphragm, and my peritoneal wall. After surgery my CA-125 numbers went to
350.
At that time I qualified for a clinical trial and I started Chemotherapy
on November 16, 2011. At that same time
I also started this experimental drug called, “Avastin”. The trial that I was drawn for was to have
chemo every week using a dose-dense amount (smaller dose of drug on a more
frequent basis). Usually chemo
treatments are every 3 weeks for 6 different times. But with this trial I started having chemo
every week up until the 12th week when the neuropathy in my feet
became a stage 2. I was pulled off that
part of the trial hoping the neuropathy would get better, but it didn't. So I finished with the traditional way with
the last 2 sets of chemo (3 weeks apart).
My last day of chemo was the day after my 10th grandchild was
born, March 24, 2012. However, I have
continued having Avastin every 3 weeks since then.
Since that point I have been doing so well. I have been incredibly blessed with energy
and strength. My quality of life is
something I never dreamed I would have after my surgery and chemo. I can’t believe the things I've been able to
do and enjoy and I consider it a miracle from the Lord that I've had this time
to enjoy.
After my surgery and once I started chemo, my CA-125 numbers
started to go down consistently. First
to 165 then on down until it was a 10 in January of 2013. We were thrilled. Remember normal is 0-35. Then I went to Vegas to help my daughter move
and during that same time we were planning for a wedding in March. I made 22 skirts for my daughter’s wedding
and was amazed at the strength and energy I had to do all of this. However, my numbers started to increase to 27
and then 53 and then 60. Then the next
3 weeks they miraculous went down to 48.
Then I was in charge of a big reunion and they went up to 58 in
June. And then miraculous they went down
to 43 in August. In September they went
up to 62 and then 3 weeks ago they continued going up to 82.
I felt like I was living on a roller coaster. Up and down, up and down. It’s no fun having to live your life by numbers! When I heard 82 I was in shock. It was supposed to be time to come down
again, but it didn't. We fasted, prayed and I received a
blessing three days ago. In the blessing
Craig blessed me that I would have peace and calmness. He also used the same words that our Stake
President used in a blessing he had given me about 18 months ago. He told me that “my days are not
numbered.”
I have had peace and calmness, even as I went to my
appointment today. Not until right
before they handed me the paper with my new CA-125 on it, did I start feeling
knots in my stomach. The nurse that
handed me the paper was really kind. She
said in as sweet a voice as possible, “Your numbers have gone up quite a bit
since last time.” Then she handed me the
paper. I glanced at it and read the
numbers 112.7. All I could say
was, “Wow!” I’m glad no one said the
numbers out loud. I think that was easier
for me to handle.
I walked out of the clinic feeling like someone had just
punched me in the stomach. Here I was
hoping for a miracle that my numbers would go down again, but they didn't. It was starting to rain as I walked to my
car. I just felt numb. I sat in my car for quite a while. I felt like crying, but nothing would come
out. Finally a tear or two dropped from
my eyes and then it was over. Why cry
over this? Everything is in the Lord’s
hand anyway. Nothing I can do will
change the outcome. What I've got to do
is to learn to accept the Lord’s will and make the best of the time I have left. But that doesn't mean that I will ever give
up hoping to be able to stay around as long as possible.
So what is the next step?
I’m not exactly sure. I was told
that once I had 2 consecutive CA-125 tests over 70, that I would be kicked off
the trial. That just happened today, but
the lady from the trial was not there to confirm it. I’m sure when she sees my latest test, that
she will call and let me know that it’s over.
So where does that leave me then…still in the care of my wonderful
oncologist, Dr. Wallentine. He has been
taking care of me through all of this anyway.
He is not one to jump to conclusions too fast and I am grateful
for that.
They just called and scheduled me for another CT Scan on Monday,
November 4th. Even though my numbers on
the CA-125 test have gone up, my last CT scan still showed N.E.D. (No Evidence
of Disease) which is good. So I’m
thinking that the doctor will gauge when I have to start chemo again by when
there is new evidence of disease in my CT scan. Hopefully that won’t happen for a while, and
would be especially nice to wait until the holidays are all over. However, I just talked to Kathy my nurse and
she said that since I had the debulking surgery, that there is no tumor that
they are watching at this point. She
said that my numbers are showing a pattern, probably indicating that the cancer
is coming back somewhere. The CA-125
blood test can detect cancer earlier before the eye can see it. However, that same blood test is also known
for going up for other things such as infection, virus, and endometriosis and
such.
It’s been interesting that the last month or so, I have felt
very compelled to have a grandma date with every one of my grandchildren. I
have made sure to document each of those dates with pictures and journal
entries, not only for myself, but for their memory after I’m gone. I’m started taking a Family History class in September and we have
an amazing teacher named Ann Lewis. She
had us raise our hands and commit to writing 8 minutes a day in our journal for
the next 4 months. I am so grateful for
this challenge. It has helped me to correct
my priorities and has seemed to help me focus on what is really important. By writing every day, it has been kind of like
a return and report system of what I am doing with my life.
I’m not saying I’m going to die right now, but I can’t help
but know that it is definitely a possibility in the not too distant future. How do you live your life with
that hanging over your head? It’s harder
than you can imagine. Everyone thinks
that if they knew they were going to die that they would automatically choose
the most important things in life, things that have eternal consequences. And that is what I am trying to do too, but life
so often gets in the way; like cooking, cleaning, phone calls, emails, serving
and just being.
So let me end on a positive note. I’m so grateful for the Plan of
Salvation! What a comfort it should be
for every one of us. Knowing that we can
all be together forever is such a comfort.
I’m also grateful for a loving Heavenly Father who is aware of me and
knows what is best for me, even when I don’t.
What a blessing it is to have a Savior who has felt and experienced every
feeling of pain, sorrow, and sadness we may feel with each of our unique situations. I’m so grateful for the gift he gave each of
us of being able to be resurrected to a perfect body. I’m grateful that I still have a body, even
in the condition it is in and the fact that I can still function and serve is
so amazing to me. I will not give
up! I’ll keep fighting just like
everyone else would. I've heard of
people staying alive from chemotherapy to chemotherapy and prayers and miracles. So whatever it takes, I’m in it for the long
haul. You haven’t seen the last of me!!!
Thank you for your continued prayers,
Michele Garvin
4 Nov. 2013 – update – They had me have another CT Scan
today. It also came back NED. However, they have scheduled an appointment
for Craig and me to meet with my doctor on the 21st to discuss what
protocol he wants to do now, since I am officially off the trial. My nurse thinks that he will want to start
chemo right away.
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