Perhaps you're weary of my philosophical musings of my ongoing suffering? (Me too LoL!) I noticed there weren't any comments on my previous post. Must have been the "Fungus" analogy :) I read a lot of blogs and don't always leave comments, so not to worry! Please know that I really appreciate all the visits from all over the world. I'm fascinated, amazed and appreciative when I view my blog Stats and see the visits from around the globe, and see who's reading my posts from where. Thank you for caring about my life, my situation, my status, my posts and my myeloma musings!
I do love when you leave me a note, letting me know you've stopped by to read about my life, as I care very much about you and your life and what brought you to my blog. I have readers email me that they have had difficulty posting, or the blog losing/deleting their comment after they click to post. Here's what I do when I respond to blogs: I make sure to copy my text before I click post, so just in case the blog deletes your post, you still have your comment saved in memory. This particular Google based blog requires an identity, so log in however you'd like, write your thoughts to me, copy your text, and click post. If it doesn't post first time round, you have your text saved to post again, now that you are signed in. Just a thought, in case you've had my blog delete your comment, after you've posted. I really do want to hear from you, hear your story and know where you are from!
If you're reading my blog you either know me personally and know this is the best way to know my status (physically and mentally) or you've stumbled upon it looking up info related to Multiple Myeloma. That's how I originally found all the wonderful blogs out there. I Googled in Myeloma, and boom! found a tremendous wealth of information related to everything myeloma! I continue to read and read and read about everything myeloma, as information about this cancer that invaded my life never ceases to fascinate me. So here are some great links I've found, that will help you interpret your blood tests, give you more detail about myeloma and some other general links I read often, such as the MMRF, IMF, Myeloma Beacon, Myeloma Crowd, etc. I also have quite a few blog links to the right of my blog, as well as at the very bottom of the blog page. So much information out there now!
This is a great site that explains all the details of (all types) of lab work:
Myeloma drugs and medications, news, support groups, etc:
http://www.themmrf.org/multiple-myeloma-knowledge-center/myeloma-drugs-guide/
http://www.themmrf.org/multiple-myeloma/multiple-myeloma-treatment-options/
http://www.themmrf.org/multiple-myeloma/multiple-myeloma-treatment-options/
http://www.myelomabeacon.com/news/2015/11/17/darzalex-daratumumab-fda-approval-multiple-myeloma/
http://www.kyprolis.com/what-is-kyprolis/
http://www.revlimid.com/
http://www.kyprolis.com/what-is-kyprolis/
http://www.revlimid.com/
Depending upon your life perspective, this TV article may comfort or offend you. Personally, when my life is done, and myeloma has COMPLETELY taken over my body and I have absolutely NO hope of survival, I personally do not want to needlessly suffer and just be a "live corpse". The idea of having NO control over my life, my body, my functions and being in excruciating pain, scares me. Perhaps I am more comfortable with death and passing-on than many, as I've had to make this decision more times than I can count for all our animals, who's life was essentially over, but their body would not yet let them go. It's just so awful and tragic to watch needless end of life suffering. I have experienced horrendous Colic situations with our horses, Cancer with our dogs, disabling Strokes with our dogs and cats, etc. When one is suffering and there is absolutely NO hope of recovery, and that life is suffering needlessly, it is time to let go and say good bye peacefully. Just my personal opinion, which of course may change when I get to that point.
Here are a few links related to a person's right to make a MEDICAL end of life choice:
Today was my 6th Kyprolis infusion for the month. I think my veins are beginning to protest this treatment, and I fear the possibility of having to accept a Port or Picc. Why fear this? Check my 2010 Stem Cell Transplant complication, when my Hickman Catheter became septic and the sepsis nearly did me in... I just hate being sick, and try to be so very cautious, and having a Port or Picc invites cooties and germs to invade more easily. Yes having a needle stick several times each week has it's dangers too, but at least it's removed after each chemo infusion, and I can wash and wash and wash freely (especially considering my animal care-taking life style :)
Monday brought 2 needle sticks, trying to find a happy healthy vein. Tuesday brought 3 needle sticks. I appreciate all that the chemo nurses do to make the infusions painless, and I know they feel very bad when our veins aren't cooperating. My February Flu "Fungus" really affected me, and my body hasn't normalized quite yet. I'm trying to eat well and hydrate hydrate hydrate. But it's all such an effort for me.
Such a lovely picture of me :( I have a bruise like this on both hands. My hands make me look so old and ancient. Myeloma has taken such a toll on me. But forward I march, one day at time, one infusion at a time, grateful for all the expert medical care I receive to keep myeloma suppressed.
So thankful that I can tolerate Kyprolis
as it is effectively attacking and targeting myeloma for me.
I've heard there are many patients that are not able to tolerate Kyprolis
for a variety of strong side effect issues
I think my good ol friend Dexamethasone is back to
beating up myeloma too! I'll have my new stats after
my March 28th appointment.
We've had heat then rain, then heat and rain. Just love the intense colors after the earth is refreshed after rain. I am very fortunate to feel well enough a few days a week, to be able to get outside and enjoy nature's beauty!
When I feel up to it, I juice these fabulous tangerines. Delish!
We're hoping when Mr Tortoise comes out of hibernation
he'll like this natural "salad" nature has suddenly grown in our garden!
Thank you for reading and caring and being interested in my Myeloma story!
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!
Use a hand/foot warmer before you have to have an IV inserted. They are pretty cheap, you just pinch or shake the small packet and it warms. Keep it on your hand for 15 minutes or so before the needle. Nurses used to always have at least three tries with me, after the warm, always on the first stick. Might be worth a try.
ReplyDeleteI always read your blog. Admire your spirit.
I was diagnosed with MM in 2007. In 2011 I became the owner of a horse, followed soon by a second one. Life long dream. They are my therapy. Being around them is essential, riding is magic.
Jan
Hi Jan! Thanks for posting and letting me know you read my blog :) And thank you for the warming suggestion. My nurses have done that before, but now I will remind them to do this regularly! So happy to read your years of success! Go you, almost a 10 year survivor! And I sure smiled when I read about you being a horse lover too! I "joke" that all the fly sprays, mane and tail detanglers, etc, that I used over the years, "caused" Myeloma. Tell me about your horses! And I agree, they are our "therapy"!!! Thank you for posting Jan, and nice to meet you!
DeleteHi Julie,
ReplyDeleteGlad the Krypolis is working along with the dex. I read your comment about stopping the dex for a month a now back on. I'm pretty unsure I want to lower my dose of dex, but if he suggests it I'll give it a try. I just hate to have my numbers go up and feel like I'm starting back to get them down.
I don't own a horse, but have had many pets over the years and it's always enjoyable, and they give so much to us. I agree, my pets that we've had to put to sleep have taught me a lot about death. I certainly don't want to linger if there's no hope.
About getting IV's , the top of my hands haven't worked for IV's forever, so I get the IV either in my forearm or bottom side of wrist. Maybe they can start going in ,in a different area. .? Ask or see what the nurses say. They do this all day and I'm sure see tons of different scenarios.
Glad you're feeling better, I go today to see my doctor. And to start round 5 of Velcade !!
Hi Christina, love your blog too! I'm amazed at your energy and things you can do. I am sooooo exhausted and fatigued, I barely do anything now :( And yes, our Pets have taught us invaluable lessons of life! Are you doing SubQ Velacade shots or IV? Yes, we will probably have to get more creative and try additional IV spots for me. Just want to avoid a permanent port at this time, if I can. I will check your blog for your Velcade update. How many years have you been battling MM? Thanks for checking in Christina! :)
DeleteJulie, thank you for the sites and lovely pictures. You will probably have no problems with aBard Power Port inserted in your chest. There is just a tiny bump on your chest. I had mine for six and a half years - never a problem. It was removed a few months ago because blood could no longer be accessed from it (no problem with infusions), and M.D. Anderson has a rule that if blood can no longer be accessed the port must be removed. It was a wonderful friend for those years. When thw time comes that I must again have infusion chemo I will definitely have a port reinserted. Half an hour before the nurses would access it with a line I'd put Emla Cream over it (like frosting a cupcake)and never felt any pain.
ReplyDeleteHi Lovey, thanks for checking in! Have you been battling myeloma for 6.5 years too? Wow, that's a looooooog time to have a port in! Congrats on all your success, and tell me more about your treatments and status. Thanks for the suggestion, and I will check in to that. I don't know how long I will be on Kyprolis. Nice to have a "pill" break from the Revlimid, but IV is a whole nother life. Ugh. Not sure which side effects I "prefer" lol. Thanks for posting Lovey and hoping you are feeling well! :)
DeleteJulie, I think a lot of us read everyone's blogs, but don't always post a comment. I never tire of hearing how others are coping and what they are going through. It is always a learning lesson for what I may experience when I have to try those drugs.
ReplyDeleteAnd I know how you feel about your hands making you look old. I feel that way about my hands and face. I would like to blame it all on chemo, (not aging) and wonder how I would look at this age without 4 years of cancer treatments.
Hi Sheri, thanks for checking in! Yes, you're right. I read so many blogs and don't always leave a comment either. I wish blogs had a "like" button as FB does. Or a way we readers can just quickly acknowledge visiting and reading. I just never know which type of post my readers prefer. My mental musings or more factual and informational? After 6.5 years of the battling myeloma, I have more emotions about it now, as I still can't believe it lol. Me too, I wonder what I would be like in so many ways without 6, 7 years of cancer... Such a good point you make! Thanks for posting Sheri and I hope you are doing well! :)
DeleteThanks for posting all the helpful links, and I like the Q & A's from the MMRF! Those tangerines look so delicious, and right on your property! Really glad to hear you are still tolerating Krypolis well, but sorry to read about all the "sticks" to your hands! EZ loved his port, and never had any trouble with it. Keep posting and thinking positive...Spring brings so much beauty doesn't it?!
ReplyDeleteHi Linda, thanks for checking in! I am so happy EZ is doing so well and you 2 get out and about as you do. He's still on the Rev maint at 15mg? I will check your last post. Yes I love Spring, and all the fresh colors. One day at a time, and I am grateful for so much. Thanks for posting Linda! :)
DeleteHi Priya! Thank you so much for checking in and letting me know you like my blog! Wow! India! (I clicked on your link and let Google lead me to your site). Thank you for letting me know where you are reading from! My current oncologist from India. She's wonderful and I love her! Such a small world. Thank you for posting, I really appreciate knowing where my readers are!
ReplyDeleteYes, Julie, Rev maintenance, but 10 mg, every day. No Dex. He also takes Valtrex every day. He got Shingles when he went off it, and that was no fun! Enjoy Springtime!
ReplyDelete10mg Rev maintenance is a great option. I did well on Rev 10mg for a few years. And thanks for the Shingles reminder... I will go take my pill now! Acyclovir gives me side effects at times, so I skip it. But I have heard of way too many of us myeloma patients getting Shingles, so thank you Linda for telling me about EZ, and for the great reminder! Happy Easter, and Happy Spring! xoxo
ReplyDeleteHey Julie!! Just now catching up on your blog. Wow so much going on! I will speak for myself, but I like to hear all perspectives.......factual, medical, emotional, spiritual, inspiration, real life. I have said it all along, but will say it again........you are an amazing example of courage and positivity. Hopefully, the stars will align and I can see your face in the next month or so. Lots of love, Gay
ReplyDeleteHi Gay! Thank you for being such a fan over the years and checking in as often as you do. And thank you for letting me know you enjoy all my various "types" of blog musings :) And thank you for your vote of confidence re my courage and positivity- most days, but not all days... when I feel lousy, life is challenging :( I will contact you asap! Thank you for your continuing friendship Gay, xoxo
DeleteJulie,
ReplyDeleteI'm a volunteer for HiCaliber Horse Rescue. I just want to say you are an inspiration to us all. Thank you for supporting the rescue. I really did enjoy this post! Really informative.
I will definitely be checking out your blog more often :)
Hi Tanaz! Awww so sweet of you to leave a comment that you checked out my blog. Horsey nuzzels of appreciation :) I love HCHR and wish I could visit and volunteer, but stupid myeloma prevents that, as you can see :( Say HI to everyone there that may know of me, and thank Leah for contacting me about naming "Jewels". I am so honored and appreciative of that! Poor sweet girl, let down by her humans :( Love all the rescue all of you do, saving so many lives! Thank you Tanaz!
DeleteJulie,
ReplyDeleteGlad you are able to enjoy the outside so much!I know how much you enjoy doing it.Thanks for being so much
of a inspiration to all of us!
Thank you Ron for always checking in and letting me know you appreciate my updates! :)
ReplyDeleteThanks Julie - you made my day much better! My 50 yr old husband was just diagnosed on Valentine's Day with Multiple Myeloma and the reality of this cancer is just starting to sink in. My husband is a lot like you - always positive -and would rather laugh than cry! I'm so glad to read of your life with MM. It gives me strength! Thank you, Mary
ReplyDeleteHi Mary, thank you for letting me know you enjoy my blog :) I'm so sorry your husband was just Dx with MM :( I was Dx at 50 too, so here I am 6+ years later and still kickn'!! :) Yes positivity certainly helps deal with stupid cancer. Read read read all the myeloma sites and you both will feel more empowered and know how to beat this stupid monster. I have a lot of MM sites linked to the right and bottom of this page, so please check those out. And don't hesitate emailing me with any questions you have Missy.Myeloma9@gmail.com
DeleteStay strong, find the best Drs and treatment center, and please stay in touch and let me know how he his! Thank you so much for your sweet post Mary!
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ReplyDelete