Wow,
yesterday was an experience to say the least. It was truly the beginning of
this wild road trip I must endure. The reality of this is all coming to light –
and I was emotionally exhausted. By the end of the day I was exhausted of being
exhausted. Went to bed about 9pm, woke up this morning at 2am. Now cannot
sleep, so I write.
I had
my 9:10am Oncology appointment. My brother, David, and (other mother) Pam joined
me. I even had the coordinator from Thoracic surgery there to support me. It
was a crowded room but I did not mind, I wanted the support. The doctor finally
came in; his name is Dr. Yeh (pronounced “yay”). Kinda funny, if you think
about it….nothing “yay” about this. Good thing was, he was more humanized than
most doctors, thorough and honest. The thorough and honest part is what I
wanted, and appreciated – yet so so hard to take in much of the news that came my
way yesterday. It was, to say the least…a truck load of information.
So we went over my diagnosis again. He asked me what I knew, and I rambled off the medical title given to me “I have Non-Hodgkin’s Lymphoma, Diffuse Large B Cell w/ features compatible with Primary Mediastinal”. He eyes perked up a bit, I can tell he was surprised or a bit amused that I was able to repeat it all back to him. “I know that it is an aggressive growing cancer”. He nods in agreement.
Next
he brought up my CT scans again. He showed me the diseased areas (ugh, that
sounds so horrible). Most of it appears in my mediastinum, and this is where
there is much concern. It was explained to me that Non-Hodgkins (NH) Diffuse
Large B Cell is the most common NH lymphoma, however it deriving from the Primary
Mediastinal is rare and makes this a bit more complicated. See, the primary
mediastinum is basically the center of my chest and very near the heart. From
my scans, it shows that these aggressively growing nodes are beginning to, if
not already pressing against my heart. MY HEART! So now what?!
Before I knew it he is now talking about what all this means for me. First I will need a bone marrow biopsy. “Can you do this today” – “Yes”. Than we will need a PET scan scheduled for this week, Friday. I will know my stage early next week. Doctor still assumes stage II. Also a MUGA scan/test (this is new to me). “A MUGA scan (Multiple Gated Acquisition scan) is an extremely useful noninvasive tool for assessing the function of the heart. The MUGA scan produces a moving image of the beating heart, and from this image several important features can be determined about the health of the cardiac ventricles (the heart’s major pumping chambers).” I will have this today at 3pm. This will check how my heart is functioning currently and if there are any other immediate concerns we need to be aware of. Blood tests, also completed yesterday. One of the blood test helps to obtain my IPI score – almost sounds like a credit score doesn’t it? – this score allows an individual to rate their likelihood of survival. Long story short, I am at low-risk, thank goodness, so my percentages are better than the median.
So
percentages…this is where it got very scary and very real. This type of disease
has a 30-50% curable rate (not survival rate). This means 30-50% are fully
cured with no remission. My doc told me that because of my age, good health,
and that it appears to be early detection that I am 50/50. Wow…
50%
sounds like a coin flip, rush and roulette, paper rock scissors, black or white…yep
for the first time I felt the fear rush through my body…I cannot believe he is
talking about ‘me’. Ludicrous! Absurd!! Preposterous!!! But no….no, this IS me…I
have to digest, I must acknowledge, it is accepted, and now I have to put on my
big girl chonies.
To be
considered “cured” is a long road ahead. Technically speaking you are not
considered “cured” until after 5 years in remission. However, I can be ‘clear
of cancer’ and start my remission in approximately 6 months time from now. This
is my ultimate goal, and I will take nothing less. My chances of that are more likely (~70-90%) because of my IPI score.
My
treatment recipe:
6
cycles of R-CHOP chemotherapy, 1x3weeksPossible radiation post chemo at the mediastinum (to make sure it is all gone)
Fertility:
Apparently
this is not covered with Kaiser medical insurance, will delay my treatment, and
we need to start, I am “young” ha!...so his recommendation is to move forward
with chemo as soon as possible with the high hopes that all girl-stuff function
will return after. (I have so many thoughts and emotions around this, but will leave
this at this).
I
have chemo 101 class this week, and I start my first chemotherapy treatment THIS Monday....Man... 7 hours of treatment.
Riverside facility. Yes, I am scared. I think this is the scariest thing I have
to do in my life so far. But… I must be more tenacious than my antagonistic lymph
nodes.
There
is a lot more I can write however I will end my post for now and continue on at
another time. I think I covered most of it. I know many of you are worried, love me, and
have so many questions – please do not text message me with complicated medical
questions, however you are welcome to send me an email or post and I will get
back to it.
Yesterday
was a hard day, and the toughest thus far. I have a long road ahead, I know
this, and I will not give up. I will be ok, and I will get through this – even on
my darkest days – I know me. I am very…very stubborn – so I know I will get
through this. People say that God does not give us something we cannot handle,
and I believe that to be true. I have no doubt that I will not enjoy much of
this, but I will overcome it. I have been through other challenges – medically,
mentally, physically, emotionally – and I have come out victorious. Not always
right away, pretty much never on my time-frame, some I may even still be
dealing with….however - I get there. (stubborn, remember – hehe).
So, do
not fret. This is only the beginning.
xoxo
xoxo
