I hate you Myeloma,
but this depiction strikes me as rather cute
And dang it! My immune system (White Blood Count and ANC, etc) is down again. Scary low. My oncologist spoke of Neupogen shots if my Whites/ANC continue to plummet, and especially if we advance to 15mg Revlimid.
How do all my myeloma cancer pals travel as they do and make contact with the public like they do? Some have said there's not a minute to waste, so they go wherever they want, and deal with the consequences afterwards. I read blogs about myeloma people's travels and just cringe at where they go (nationally and internationally) and then read they are later hospitalized for flu, pneumonia, viruses, etc. I am happy to report that my isolationist, bubblized lifestyle is working... and (knock on wood), I haven't been really sick-sick (virus or bacterial type) for a while! I'm also happy to report that I haven't seen the inside of a hospital since my Auto-SCT process! So I must be doing something right :) I know I am missing out, and limiting my already limited life as a result of not traveling, but then again... I just don't have the energy or stamina to do the things I would most want to do...
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| One day... I will do this again! |
True enough, I hardly go anywhere... I don't shake hands at all. I don't hug much. Actually, I don't make much physical contact with anyone really (unless I spray them down with bleach and alcohol first! j/k!). I socialize at a distance (on the few days I leave the house) and give only "air hugs". I still actually make it into my office several days a week. Everyone generally, is really respectful of my situation... except for those that don't understand my cancer type (it's invisible to the outsider). Those that are just meeting me for the first time think I'm kidding, laugh and make a joke or two, and still try to shake hands or hug me. And then there are those that think I am just being crazy OCD clean.
Case in point the last few months. I've had a variety of weddings to attend, family gatherings, non-profit events, a VW car show, special social events at my college, etc. When the topic comes up, which invariably it ALWAYS does as I do NOT shake hands, hug, kiss, get close, etc, people laugh and say, "oh Julie, don't be so "frikn" paranoid". You look so good! How can you have cancer? Your energy level is so amazing. You do so many things. Just look at your hair. You look so good" blah blah blah!!! Well thank you for your sweet compliments everyone ... but I really am a sickie. I just dust off my cowgirl boots, pump myself up mentally, smile a lot AND PLAN ALL MY SOCIAL EVENTS AROUND POWERFUL STEROIDS CALLED DEXAMETHASONE!!! And I DON'T EAT before I go anywhere... just in case...
Hello people! If only you saw me when I get up... without a make-up, with un-glued, un-fluffed hair, with dark circles under my eyes (lol just ask Jim). And just imagine if you really knew all the time I spend in the BATHROOM! Not to mention all my daily symptoms and medication side-effects. Then you would understand I really do have cancer. Perhaps "invisible to you, but all too "visible" to me. And by the way, I am not exaggerating: Myeloma really is incurable, and our clocks really are ticking rather fast, and the word "terminal" is relevant. I say these words over and over and over to make sure I am fully in touch with my situation, impressing the point to myself that I must "get my show on the road"... now!!! Did you know... I have already out-lived my statistics...
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| Been there, done that, a very long time ago... want to do this again! |
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| I've always dreamed of having pasture land! |
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| Can you just imagine riding/driving down this road |
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| Snow, sun, pasture, horses, fresh air... limitless views |
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| And I always wanted a Red Barn! |
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| Cute, small, in/out access and I just love white fencing like this |
I don't know when, how or where, but I just want to swim in beautiful, crystal clear waters!
For those of you that swim in pools or oceans, travel to local or exotic beaches and take for granted doing so... I can't recall the last time I dove into a pool, or fully immersed myself in the ocean.
This pic reminds me of when I was stung by a "Man o War" on a Maui beach!
Very-pre-myeloma days. Maybe that "caused" Myeloma?!
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| Maybe one day I will post a pic of me in one of those chairs... |
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| Happy Trails everyone! Hello November! |
I lost an incredibly beautiful, vibrant, myeloma-sister a week ago. We were diagnosed just days apart and had very similar myeloma treatments. My head is stunned, my heart broken for her and her family, and I am just so devastated to hear of her loss and myeloma's affect on her...
I will link her blog here when her family let's me know it's ok, after they post her final blog entry...
I have lost more than 6 myeloma peers since my Dec 30, 2009 diagnosis. We were all diagnosed around the same time, and have had most of the same treatments...
And finally, my recent Stats:
IgA = 1200 (officially 3x the high end of normal) 70-400 scale
M-Protein, M-Spike = .94 (NO cancer = 0 zero)
ANC = 1.2 scary! (1.8 to 7.7 scale) Cooties stay away!!!
WBC = 2.6 scary low immune system (4 - 11 scale)- Hazmat suit time!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Julie, please keep writing. Like Keith said, I read your posts shortly after you post them. It is hard to know what to say when people ask how I am doing. I usually say "great" or "good!" because I feel pretty good, my hair has grown back and I don't look sick. But I am doing Velcade 3x a month, along with dex. And now 3 years post diagnosis with an incurable disease that people don't understand. So they don't know the shadow that is always lurking behind me. I try not to think about it all the time, but the truth is, I most likely won't live long enough to retire with my husband into our golden years. But, I also don't want to walk around with a sign that says "I have cancer" just to remind everyone. So I keep smiling, say I'm in treatment and doing well. And I keep dreaming of those beautiful places I want to travel to, and so should you. I hope we both have our dreams come true!
ReplyDeleteHi Sheri, thank you so much for your spot on post representing "us". Do you have a blog I can follow? It's amazing how many of "us" are out there and are experiencing so many of the same things physically and psychologically! Yes, you stated it perfectly- with our hair back and us not "looking sick" and not wanting this MM monster to consume us daily, people don't "get it". And like you said, we don't want to dwell on our shortened clocks... but we know our realities... Please let me know if you have a blog Sheri, I would like to stay in contact with you and read of your treatments and dreams too :) Thank you for your insightful and inspiring comments. Julie
DeleteJulie, the news is not great, but you are and I am like a fucking stalker checking for updates good ,bad, in between or funny. THey are usually funny in your Julie "no filter" way. Keep writing, sharing, letting people like me that take for granted that I can get out everyday and not have to worry.. You change my life everyday in ways that you don't know. When I have fear, I think of you... When I say, I'll do that next Halloween, I think about you.. Live my life now!! Seriously, the more you post, I will keep reading and remembering how much I need to get off my ass and LIVE!!!! You are the reason I have bird shit all along my back fence now!! I bought a bird feeder and now we have about 20 birds that basically live in my back yard and I would have NEVER appreciated it before your "birdie saving".... I love to see them out there every morning... Makes me thing about you daily.. I fucking love you and I miss you... Let's get drunk, Love you Madonna
ReplyDeleteI love you Madonna! And I so appreciate you checking in and letting me know I still make a difference in your life! Let's have another "NO FILTER" meet up! hahaaa just love that saying and concept! Live now, do it now, don't wait... time is marching forward for all of us! And thank you for feeding my Birdie's relatives! Bird Power on!!! Did you see my Birdie blog too? And I agree, time to get "drunk" on life! Spiked Jamba asap! Thank you for checking in and letting me know I can still psychologically "kick your asset"! love you, miss you, more! Julie :)
DeleteJulie,Keep writing.Alot of us are reading.Alot more than you know.Your extra
ReplyDeleteeffort is appreciated.I still think your positive,caring outlook on life will prevail.Know many are praying and thinking positive thoughts for you.
Ron
Thank you so much for checking in Ron and letting me know my posts are meaningful. It's an interesting thing to write so publicly and not know who is reading about my life. Often, I think I may put too much out there, but then again, I hope/know that my posts can help others as much as it helps me to write. Hoping all is great in your life, and your family is doing wonderful. I appreciate the positive thoughts and prayers! Julie
DeleteHi Julie,
ReplyDeleteI am sorry to read all your counts etc have come down again and up when they shouldn't. I can only imagine how you must feel, losing another friend.
I love reading your blog. You are such an inspiration to me. My husband was diagnosed with Multiple Myeloma in April. They have stopped chemo now because it doesn't seem to be working anymore and we are hoping that he will be able to have a stem cell transplant and then some more chemo afterwards as Prof says there is a good chance his body will react better to the chemo post stem cell transplant. His M Spike is sitting on 19.
Well enough about us. Stay positive and please keep blogging
Vivienne
xx
Hi Vivienne! Thank you so much for posting and letting me know you enjoy my blog posts. Means a lot to me to know there are people out there reading, appreciating and enjoying my musings. I am so sorry to hear of your husband's battle and I encourage him to do that SCT soon! I really do feel mine saved my life. There are so many new chemos/treatments out now, so hoping his Drs get going on this for him. Do you know what "type" of myeloma he has? IgG? IgA? Please let me know if you and/or your husband have a blog, so we can stay in touch. Best of luck to your hubby Vivienne, and please keep me updated on his status. Thank you, Julie
DeleteHi Julie,
ReplyDeleteThis my 1st post ever so bare with me. I was diagnosis in Dec. 2008. I take Revlimid and Deximethizone. I have harvested my stem cells and am in remission as of now. I was like you at first, told everyone of my illness and wouldn't go out to have fun. I wouldn't shake hands or hug at church. I wasted 2 years of my numbered years. Now I live as I did before I knew. Well I get tired faster and I have more aches and pains but I keep keep'in on. I have a new employer and I don't want them to know. I want to be treated like everyone else and its working. I'm sure I will have to let them know sooner or later. But I'll cross that bridge then. The only thing I have done as a bucket list was to go deep sea fishing and had a blast. I have to say that I'm not worried or scared of what's to happen. That might piss a lot of people off. Like I said when I opened that I never talked about my condition outside of my family and this may be my only time talking about it. Something you said made me want to write. OH, one more thing. I don't know if horse poop causes cancer but it heals chapped lips. Well it doesn't heal them but it keeps you from licking them. Ha Ha
Hi Anonymous, thank you so much for your comment. I feel honored I am your "first post ever" ! :) We are a year apart on diagnosis, and I am thrilled to hear how well you are doing and feeling. I agree that we cannot let this myeloma-monster prevent us from living and doing things we want to do (while we can). I am just very careful to not contaminate myself, and like you, when I feel ok, I do things that are meaningful to me. Congrats on your new job and your deep sea fishing bucket list trip! Keep it up! I admire you for all your strength mentally and physically. Sounds like you have much more energy than me, so keep it up, and please stay in touch and let me know how you are doing. Thank you, Julie
DeleteHi Julie. You are my inspiration. I know what it feels like to have people not understand when you don't feel well, but I'm not about to have a scarlet letter tattooed on me. It seems I cannot really predict how I will feel tomorrow (and sometimes have trouble with today). I want to travel, now that I've retired (a bit early, but none too soon), but then pay the consequences. I am still struggling to be positive, glad to celebrate birthdays and time with those I hold dear, and truly "live" while I can.
ReplyDeleteHi Sandra, o boy did you say it ALL! If I wind up crazy enough on a Dex day lol... I like your idea of a "scarlet letter "M" hahahaa! with an explanation of this stupid, invisible cancer! So true about wanting to live, to feel well to travel, be with family and friends, be positive... but alas there is so much unpredictability of our symptoms and circumstances! Do you have a blog I can follow? Thank you so much for your spot on post Sandra! Julie
DeleteHi Julie,
ReplyDeleteI usually follow Vivienne’s blog about her husband, Jimmy, and saw the post that you made there.
Just by reading that one post I realised what a brave, inspiring, STRONG person you are! You are such an awesome person. I also went through the whole cancer journey and say thank you every day for the wonderful people in my life that carried me when I could not go it alone.
I would just like to say thank you for your straightforward writing on your blog as you just reminded me that life is just that short and we should live it to the fullest… at all times!!!
Cheryl (South African Survivor)
Hi Cheryl! Thank you so much for your sweet words of support! Wow! I just love the international connection between us and Vivienne! But how tragic that it's stupid cancer that brings us together... Congrats on being a survivor! Do you have a blog I can follow? Yes, we must embrace everyday, every moment and LIVE! All this is so surreal to me, and I thank you for appreciating my writings and also reiterating we must LIVE life to the fullest all the time! Thank you, Julie :)
DeleteHi Julie,
ReplyDeleteI do not have a blog as of yet, but am seriously considering starting 1. Will let you know when it happens...
Are you involved with the ACA there?
Cheryl xxx
Keep me updated Cheryl! :) Julie
Delete