Tuesday, July 16, 2013

Walnut & Kiwi

Today we saw Dr. Grossmann for results from last Friday's scans and brain MRI.  My nerves kept me up during the night, which didn't help the whole processing info stuff.  I once again was grateful for Lindsey being with me and asking all the unknown questions and digging deeper into the inevitable.  Love her.

As I expected, the two tumors that I can feel under the skin (left lower back and right side groin areas) have grown.  The tumors in my liver seem to be stable or shrinking.  Bad news/good news.  The very good news is that there are no signs of other tumors anywhere, including in my brain.  Whew, instant relief.  The two subcutaneous tumors were felt and measured by Dr. G and his nurse, Carolyn.  Dr. G said he liked when they used to use "fruits and nuts" as a measuring stick - the one in my back is the size of a "walnut" and the one in my groin is the size of a "kiwi".  So, now, what to do about that walnut and kiwi?

Dr. G recommended that I go for the trial/study program with the new investigative drug, PD-1 (it was the same trial I wanted to get into about three months ago when we found out my iron was too low to qualify). 
Darren's co-worker, Amanda, came in to give us the updates and "Reader's Digest" version from before, much of which I still remembered.  Basically, if I am accepted, I will be put into a randomized computer selection with two chances for the PD-1 drug and one chance for standard chemotherapy.  I am praying mightily that I beat the odds and get the PD-1 arm of the trial.  But, if by chance I am selected for the chemo, Dr. G explained that it would be his choice of action anyway to kill these tumors and anything else that even thinks it should become cancerous.  We asked about radiation to the specific tumors and he said that at this point, he would be more comfortable killing everything, which chemo would do, rather than just the sites of the tumors, which radiation would do; and besides that, radiation would not do anything to the small tumors in my liver, where the chemo would also attack those.  Seems an easy choice, right?  I think so.

My biggest concerns are the side effects of the standard chemo.  We all know them and see them, especially those of us who are regular visitors to Huntsman - loss of hair, fatigue, flu-like symptoms, etc.  I know I could handle these side effects (look what I've already had to face for the past 2 years), but I also know how hard it would be on my self-esteem to lose my hair, my eyelashes, and my eyebrows.  I feel very vain admitting my fears, but it's true.  From birth, I have had a mop of hair.  It's not always pretty or healthy, but it would be very difficult to give it up completely and be bald.  And to lose my eyelashes, which have always been long and fun... I just wouldn't feel like me.  I wonder at the toll this loss would be and whether I could be brave enough to fight through it.  Of course, I know I wouldn't be alone and I know hundreds & thousands of women have done it before me and have come back triumphant.  Fighting melanoma feels so much more long-term - to the death - so I can't help but think that I'd never have hair or eyelashes again.  Stupid thoughts, really.  What does all that matter when there is life, when I can remain with my family longer? 

So, my prayers (and I ask for yours, too) are to be selected to the PD-1 arm of the trial, which side effects are much less dramatic and do not include hair loss.  But, if it is God's will that I go through standard chemo, I will also pray to be strong and able to handle that difficult road.  Neither treatment regimen will be fun and I will need the strength that only comes through the Spirit and faith and hope to get me through it and see these tumors defeated.  I continue to believe in miracles.  David killed the giant, Goliath, with the help of the Lord.  I have the great opportunity (another miracle) to have this disease in a time when so much research is going into melanoma treatment, and I know that is part of the Lord's plan, too.  He will be with me.  He knows my little vain heart and the blessings I need.  And who knows?  If I do lose my hair, hopefully it will grow back curlier and better than ever before...

Next step is a "core biopsy" of one of the subcutaneous tumors, and that will be done on Thursday, July 18.  From there, the trial/study team will gather tissue samples, blood work, consent forms, and all the ballyhoo the drug company (Bristol Myers) needs to get me qualified.  Within three weeks, we should know if I'm accepted, which arm I have been selected for, and when infusions will begin.  Miracles & hope...

3 comments:

  1. My heart and prayers are with you. Wish I could do more. Love you.

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  2. Dear dear friend... eyelashes can be bought, eyebrows can be penciled in, and hair is, well you know... all temporary of course because you will be back after this new fight, better than ever - all our prayers and thoughts and hopes go with you! love always, Janet

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