Holly King Holly's Support Network

2008

I was dragging. I had night sweats, hot flashes, and
strangely sensitive and itchy skin. I thought I was going through menopause.
Little did I know what I was experiencing were “B” symptoms.

January -March 2009

For a while I thought I just had a strange pimple in my
cheek, by January it had grown to the size of a gumball. I had it checked by
the GP and she sent me on to surgery to have it removed. I waited for the
results for two weeks and then saw the surgeon. She said, “The bad news is you
have cancer, the good news is that you have the good kind of cancer.” Shocked
of course I asked her, “Did you get all of it?” “ Yes, but It’s not that kind
of cancer. You have a blood cancer”.

March 2009 onward -2013

Healing from the surgery took a long time. They opened up
one side of my face to get the tumor and in the process bruised the nerves of
my face. Half of my face was completely paralyzed for at least 6 months, all
better now.

April-May 2009

I was referred to the Oncologist and was told that I had
been diagnosed with Indolent (slow growing) Marginal Zone Lymphoma of the Nodal
variety (NMZL-NHL). The process of “staging” included an endoscophy, sinus
scope, and bone marrow biopsy.  I
was stage 1. This disease is “treatable” but not “curable”. I was given
Rituxumab, not “Chemo”.  It is made
out of cloned mouse antibodies, which are designed to go after the cancer. Now
I am part mouse!

March 2009

By the end of May I had finished my treatment. I had gone
weekly, for four weeks to the infusion center.  Gradually I started feeling “normal” again. 

2010 Monitoring return of disease is done by scans and blood
tests. I got so well I was able to train for and climb the Grand Canyon! 

2011

I started to have various aches and pains in hips and knees.
I tried to get exercise but my muscles and joints got so painful that I
couldn’t keep a regular training schedule.  Oncologist didn’t think it had anything to do with the
Lymphoma.

2012

I started to get some new nodes enlarging in the back of my
neck. I was experiencing temperature fluxuations and fatique so we did another
biopsy.  No findings of lymphoma,
yeah! Later in the year

scans showed minor “lymphadema”. Biopsy of node armpit.
Again it was “reactive” but they did not find lymphoma. Towards the end of the
year, pain in my throat, knees etc 
spurred me to get a second opinion. Specialist from OHSU dismissed my
symptoms  as “autoimmune”, but did
not refer me to rheumatology. 
Regarding when to worry about symptoms, Dr. said, “ Don’t worry till you
feel really bad. We won’t treat again until  ‘B’ symptoms come back. This disease, ‘waxes and wanes’, you
will always have it. The only thing to keep an eye on is if it transforms to a
more aggressive type of lymphoma. 
Otherwise, just forget about it.” I asked, at what point do I need to
worry about the tumors?” and he said, “When some one says, ‘Hey, where are you
going with that golf ball on your shoulder”.  By the end of 2012, my joint pain had increased so much that
I couldn’t raise my arms to put on my bra. My elbows, ankles, jaw, and hands
were inflamed and painful. Sore throat, mouth sores couldn’t’ roll over in bed.
Walking up stairs very painful…bad, bad, bad

2013

Finally my oncologist referred me to Rheumatology. I was
diagnosed with “Mixed connective tissue disease” and treated with prednisone
and Hydrochloroquine.  The
hydrocholoqine took at least 6 months to kick in.

2013-2015

Periodic scans to check on NHL showed it was “stable” but I
anemic.

2014-2016

Moved to Santa Rosa New Rheumatologist diagnosed
me as having “Lupus”.  About 6
months ago I noticed a new bump on my left collarbone. Oncologist dismissed it
as small. Then I noticed swelling on upper left chest area near nape of my
neck. Increasing fatigue. CT scans, which revealed nodes suspicious for
reoccurrence of Lymphoma. Weird “soft tissue mass” near collarbone area
prompted needle core biopsy. Tissue sample showed normal tissue. Second, second
opinion new doc ordered a PET scan, confirmed suspicion of indolent lymphoma,
but cells still needed especially on “soft tissue mass”, which did not look
like a node with lymphoma. Today, I repeated Needle Core biopsy of chest wall
soft tissue mass.

To be continued in Journals.