Surprise surprise I am posting 3 days early, as so many have asked how I am after my most recent awful fever bug. I thought 13 would be a lovely date to update my status :)) Thank you everyone for caring about my crazy myeloma life as you do! Deeply appreciated.
As yucky as I still felt this past Monday, I pushed myself to show up for chemo. I had already missed the previous week, due to being so sick and feverish. I kept thinking about the irony of missing chemo to get better from this awful fever bug, yet myeloma was probably diggin in deeper without the chemo. I knew I'd better not miss another chemo week, if I could manage to go. So I went. I was quite surprised when my nurse took my temp and I still had a slight fever. Good thing I didn't check before I left home, as I probably would not have gone. Turns out that they don't really consider a fever a fever until it's over 100.3(?), and mine was 99.7, so they were ok with going forward with my treatment. I was somewhat dehydrated too, as who drinks enough when you feel so lousy with a fever?! And to top things off, it wasn't easy finding a good infusion vein, so I had several "sticks", but my expert nurses finally succeeded. Fortunately, good ol Dex steroids propped me up a bit, so I finally felt better by Tuesday. Not great, but ok! Whew, 2 more chemo treatments down.
But here I go again, trying to figure out how to live life while in continuous treatment. I'm supposed to have my chemo "make up week" this coming week, but I also have my 35th anniversary recognition at my college. Previously, (prior to getting sick) it would have been my chemo break week, so no problem attending 2 events without having to worry about post chemo/steroid side effects. But now, as a result of being sick, and missing a treatment week, I will only have had 2 weeks of Kyprolis, rather than the regular protocol of 3 this month. I know I should do my 3rd treatment week, but seriously, it's not possible to attend "normal" events close after treatments and with yucky crashing side effects. Who wants to show up to be honored and celebrated, feeling half dead and sick! Ugh, the conflicts of Treatments vs Living Life. I just can't let cancer can't steal all of my life, so I opted out of my chemo "make up week". Yes my numbers will probably Not be good this month, (due to my illness and minimal chemo), but these are the choices we have to make having incurable cancer, being continually treated. Icing on my cupcake, this 35th recognition will be my "last big hurrah" at my college, as I've finally reckoned with accepting that myeloma has stolen my career, and disability/retirement is just around the corner...
So I last left off several posts ago, that I made the decision to cut my hair. My poor little pony tail was thin and lifeless and I knew it was time. Ironically, my hair grew full and fast on Revlimid and Dex steroids, but I guess there's something about Kyprolis that thins the hair, so I knew it was time to accept a change was needed. I always had fun with my short sassy styles after my stem cell transplant in 2010, so it really wasn't a big deal to me to go short again. A a matter of fact, it's exactly 6 years ago that my hair really really thinned from Cytoxan and Melphalan. I cut my pony tail off June 2010, prior to admission to the hospital, and then I fully buzzed late September 2010.
it's hard to see me holding it here
Right before I got sick, my daughter went with her friend to a local "Clear the Shelter Day". She wasn't "planning" to adopt, but this little gem "picked" her, and now we have another amazing rescue that has joined our pack. Poor lil girl had been a stray on the streets, and not treated well either in her previous home, or while a stray, as she was thin and scared and timid and showed signs of abuse. The lack of love and consideration of living beings by humans, will always mystify and anger me...
So here's our new little family member: Nala!
and happy happy in their "grown up" coop!!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Hi Julie,
ReplyDeleteLove hearing more upbeat tone in your blogging and your hair looks amazing, the style really suits you.
I also just wanted to take the time to say thank you for all your support and positive comments you always leave on my blog.
:) xx
Thank you Viv! I read your blog faithfully and look forward to all your updates about Jimmy, you and your darling family! Hoping all continues to be well for all of you and I will check out your new post asap! xoxo
DeleteHello friend! I just now caught up on your August blog. I'm so sorry that STUPID cancer is stealing from your life and your hopes and dreams. You are entitled to vent.......you have been SO positive from day one, but it's perfectly normal to grieve the loss of normalcy and the life you wish you could live. I wish I would have seen this post sooner about the COC 35 years recognition............I would have come to see your face and be there for you. Lots of love and prayers for you. I miss you and think about you a lot!! LOVE. Gay
ReplyDeleteThank you so much for all your continued support and encouragement Gay! We will have a date soon, as soon as I can find my "helium" :) I will email the link to the 35th pictures! Hope you're out and about playing and enjoying your retirement, as it was meant to be!! xoxo
DeleteHi Julie,
ReplyDeleteI recently discovered your blog. It helps me a lot to go through my own myeloma-battle. Thanks a lot for the insight into your life and your struggle against the cells we didn't invite and that changed our life completely - unasked...
I got my diagnosis in October 2014, the day before my 51st birthday, during holiday in Germany from my work in Egypt, IgG Kappa, 2 cm hole in my right upper arm bone already, some weakness in one of my thoracic vertebra, left Egypt for Germany, operation, radiotherapy, went through VCD-Chemo in the beginning of 2015, autologous stem transplant in April 2015, taking Revlimid/Dex since November 2015, "perfect" results, better than anything else until now. But the numbers that crushed in the beginning are going down more slowly since last two rounds, as slow as I fight my way up our staircase because of the respiratory problems I have with Rev/Dex. Fortunately we are now building our new house, bungalow, one storey only...
I hope my english is okay... Didn't try to explain my medical details in english yet ;-)
Always looking forward to your next entry! Cheers, Michael.
Wow Michael! Thank you so much for taking the time to tell me your story and that you follow my blog! Means so much to me to know who's out there reading my life :) Your English is perfect and I am thrilled to know you are reading from across the globe! Sorry MM hit you as it did. We are similar that way, as I was Dx right after my 50th BD. I'm IgA and you're IgG. So sorry for all the bone issues you have. IgA hits me in the compromised immune system and extreme fatigue and low low blood counts. Sounds like your treatments are successful and so glad you are able to continue working, enjoying life and building a new house! Start a blog! All our stories are so important and I would love to see your international pictures! Thank you Michael for posting and saying hello! :)
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