Wednesday, December 17, 2014

Just wanted to give a quick update.  Things are going okay.  I saw the doctor a couple of weeks ago and we decided to cut the dosage of medication because of the chills and night sweats.  It has helped.  I have only been waking up two or three times a night to change my clothes and bedding, and the chills are much less severe.  I still feel cold almost always.  My feet hurt to walk on.  In the morning it's like someone has thrown glass all over the floor, and I have to get the kitchen.  I have random painful red bumps appearing and disappearing all down my legs.  Both legs are swollen by the end of the day.  And I generally just don't feel 100%.  I am just over the first cold that I can remember since I started immunotherapy almost 3 years ago.  My blood counts are still a little low from the TIL, so maybe that's why I couldn't fight it off.  This cold came with a cough that was so strong it made me throw up.  Josh slept on the couch because things were just ugly at night.  Luckily he is back, and thank goodness he leaves at 5 in the morning, because that's the only dry spot in bed and it suddenly becomes mine.

I have been a little bummed about my health lately.  I was offered a trip this month.  I know he will be embarrassed that I'm mentioning it, but Josh's brother Mike opened up the world to us and said pick a place, any place.  Like my own Make-a-Wish granter.  I tried to think of somewhere.  I wanted to be warm.  Sun would be tricky (my lips have blistered like crazy after 10 minutes of forgetting to cover them outside), and even slathered in sunscreen and a wide brimmed hat-in a swimsuit I look like I have some communicable disease with these red spots on my legs.  Italy sounded amazing, but do I really want to use that up in the winter?  And how big of beds do they have in Europe, and how many towels per night can I wipe down my dripping body with?  And how will I clean all those wet clothes?  And what if I can't keep going all day like I would want to?  And how will I keep my medicine in the refrigerated during a trip?

And so, it didn't happen (he says I can take a raincheck, so no worries).  There is nowhere I can hide from the disease.  There is no escape right now.  Not even in sleep, which has always been my relief.  I have been having nightmares again, I don't know if it's because my sleep is so interrupted or if it's because I drew a line at the BRAF inhibitors and said at that point things will be bad, and here I am, and in my mind things are bad, so I come up with scary stories to tell myself while I sleep.  I don't know.

During the day things don't seem that bad.  I have been trying hard to find appropriate gratitude for the drugs I'm taking.  I found it in my own words here at the end of the post.  Someone handed me months of extra life.  In pill form.  I'm so lucky I've been around these three years to watch my kids grow up.  It's crazy to think we are spinning around the sun at the same speed.  They change so quickly, and Josh and I are stuck at 22 (ha!).  I'm just so grateful for this bonus life, I know I'm lucky to be here.  I feel really lucky to be here.  More than mad at the disease, and disappointed that things aren't turning out how I planned, I feel deep down very lucky.

9 comments:

  1. I will keep praying! I'm so glad to read the update. I'm sure you have a million people offering you advice so I will join the ranks...have you tried music therapy for sleeping. There is special music that has been engineered to change the brain waves. You can actually lower the brain waves and keep them lowered to the Delta wave range which is where we are in the deepest sleep. If you feel you want to try it, let me know. No obligation. This isn't some MLM plan. It's just music you get off Itunes. ;)

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  2. I wish you felt better. We feel lucky to have you.

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  3. I feel lucky to know you. You inspire me with every word. Don't stop believing. I'll never stop praying.

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  4. I wish a fabulous trip could some how help you escape. I would give anything for you to feel better. Praying you get some relief from your pain and awful side effects. Thinking of you always. xoxo

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  5. Last Sunday you were at the MoTab Christmas program, right? In the Little Theatre? Darren was three seats away from you, and the girls and I were right behind you. I saw you and wanted to say hi, but didn't want to interrupt the program. Then, when I looked over a bit later, you had left. I was sad because it would've been fun to catch up, but you looked beautiful and I was so excited to see you. Hugs to you. I think of you often.

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  6. Gosh, I hadn't read your updates for awhile. Your strength is amazing to me. We just keep praying and praying and praying!

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  7. I'm so sorry to hear about the nasty side effects of this drug. No fun at all. I know in the moment, it feels like there is no end to this, but there is and it will come. You are doing a wonderful job keeping a positive attitude and retaining your hope. :)

    Oh, and by the way, I know a few people who have been on the BRAF drugs and are still around WAY past a year. One lady I know took them back when they are in clinical trial form and had a complete response and has been stable for over 3 years. You just never know.

    Also, have you thought about going somewhere else for an opinion? I know you have great doctors, but sometimes getting a fresh perspective is good. My doctor retired in June, but his replacement is one of the best. His name is Kevin Kim and he is at Cal Pacific Medical Center in SF. He used to be the Director of Clinical Research at MD Anderson. He's world renown! Plus, it's a bonus that he's got great bedside manner and very passionate about helping others with this disease. Just a thought. Let me know if you want to discuss. I see him again in Feb. when I go back for scans.

    My prayers are always with you!
    Christina

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  9. Alisa, I think of you often. I haven't checked your blog in a while. I am so impressed with you and your strength and example. Your boys (all of them) are so blessed to have you. You are an amazing woman, mother, wife and friend. I continue to pray for you and send love your way all the time.

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