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Melanoma Caregivers

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This has been a tough week.

We should have been at VCU with Wayne in residence receiving treatment via the TIL clinical trial.

Instead, we are still at home and working and waiting (ok, grateful we have jobs and a home, just to be clear.)

His lblood abs came back with an elevated HSV value that cause the study doc to quadruple his anti-viral meds and get another blood draw yesterday while backing up the Treatment protocol start for a week. It will take until Friday night to get results. HSV is herpes simplex 1, most commonly known as fever blisters or cold sores. Up to 80% of the population has this virus and will pop a titer on a blood test with no symptoms. But having a result over a certain value means it's not safe to give Wayne the chemotherapies to eliminate his immune system prior to transplanting back his TIL cells. So....poop.

We have been in a holding pattern waiting again on results and we all know how unplesant that can be.

Meanwhile, both our mothers are trying to upstage my husband with their own medical issues: my mom had a stroke while I was on the phone with her a week ago and last night his mom was admitted for a COPD exacerbation. We have tried explaining that this is HIS diva moment, but they are just not cooperating with the program.

Speaking of not cooperating, the melanoma is steaming ahead, too. At my last update I think I noted that there were new cutaneous spots showing up at the rate of about one per month. This has accellerated to about one a week. The Ct and Pet scans now show liver and lung presence in addition to the external skin lesions. And lymph node involvement under one arm on the right and left groin. 2 days ago the underarm node swelled across to the width of a baseball and has the bottom 1/3 now showing as black and blue bruising.

Yesterday we listened to a podcaster named Nora McInerny who also writes under Nora Borealis (http://www.noraborealis.com/). Her husband died when she was 32 of brain cancer. Her podcast is called Terrible, Thanks fo Asking and we listened to Episode #65: Sad and Lucky. Holding on to feelings that tend to be at different ends of the spectrum has been happening quite a bit for me lately so she caught my attention.

Today I am feeling anxious and lucky: anxious about medical things I can't control in the lives of my dear ones. Anxious about my work that feels very busy and where I don't have concentration perseverance to complete some writing projects that are overdue. Lucky that I have a job, and my beloved, and our moms and thriving adult children, and Miss Scarlett our cat, and a new grand-nephew. Lucky that we have family and friends where we live and back in Richmond to give us shelter, food, prayers, love and blessed Wayne is in this clinical trial. Whoops! Back to anxious that the HSV draw or the planned Sunday oral swab for flu will present another roadblock pause and the bloody cancer will throw a party.

So today I'm also just a little terrible, thanks for asking. I know I won't stay this way, but it's where I am right now.

Peace,

Missy

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Holy crap missy.. I am so sorry that it is at a stand still.. I personally get fever blisters; so I have that and didn’t realize that it can be a big deal in situations like this. When it comes to your mothers; I understand that. I was taking care of Ryan at his worst and his grandmother with Alzheimer’s at her worst. It was a very stressful time.. and currently my aunt is very recently diagnosed (within the last week) with a type of lung cancer, that we are waiting on pathology for currently. She also has MS. So to say the least; it all sucks.. I remember reading your post about the spots showing up one per month, and am hoping the HSV can get the hell out so you can get on with this cutting edge treatment. I have so much hope and am praying.

Just like you told me, it’s okay to feel this way. I am in this boat too. Today has sucked. Sucked big time. I’ve been on the verge of tears all day, but I have a 4 year old that picks up on everything.. so I do my best to hold things in.

Keep us updated, seems like a lot is going on..

Peace to you,

Kelly

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I admire your strength and courage in the face of such adversity. We are lucky to have you in this group to show us the way!

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Hi Missy

I’m sorry for the delay and both of your moms. My mom had a stroke the night I brought my sister to her house after her gamma knife and All I could think was “really!” I also remember my same frustration at seeing those modules/lesions for some reason they really made me angry maybe because I could see them:). I’m thinking of you all and happy that a few here are NED:).

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Thanks to you all.

Missy

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How much can one take?! Praying for some peace, comfort, and some positive news for your entire family. Take care.

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Thanks. This morning is better.

missy

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Wow! I’m sorry for the delay and to hear about your 2 mothers as well. That is a lot to deal with at one time. I pray Wayne can get back to the clinical trial ASAP.

Michele

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Wow, definitely a very difficult week with the delay and your 2 mothers falling ill, and with the lesions and organ presence. So yes, ok to feel sad, angry and grateful at the same time. Will be praying for you and Wayne, and send good vibrations so that he can start treatment on the trial asap. You are a wonderful, strong and courageous woman, your husband is so lucky to have you by his side. Please take good care of yourself too.

Dorothe

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Thank you Dorothe

This afternoon our study doc asked us to come in tomorrow for the respiratory swab if the HSV lab us acceptable and admit earlier on Sunday. So we packed up today.

Now if my sweetheart can stop checking the patient portal for the lab results every 36 minutes...

Missy

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