Where to begin... I'm so beat up...
I don't want to always post poor me syndrome news all the time, but sadly that's the true reality of my life...
I hurt all over
Every time I move, I pull a muscle or tweek a bone
Or crack a bone, who knows
I hurt all over
I hurt physically
I hurt mentally
I hurt inside and out
I hurt because Myeloma is eating me up from the inside out
I hurt because I still try to be me, and do "regular" things, when I shouldn't
I hurt because I am reminded of my lost dreams and goals
Still, now matter how much time has passed, how long I have been fighting Myeloma, I still cannot comprehend and accept what has happened to me... I understand intellectually, I know the medical facts, but I just cannot accept that Myeloma is killing me slowly, one day at time, and I don't have the options I used to have. I used to have all kinds of options. I specialized in options. I created options. I worked hard for options. I coached everyone on their options. But my options have been stolen from me.
My life status hits me all the time, but now with the change to Elotuzumab-Emplicity, and back to Revlimid, with the resulting side effects, denied realities hit me daily. I am so sore. My head constantly hurts. My neck hurts, my back hurts, my legs hurts. It hurts to sit. It hurts to sleep. I can never fully relax or feel good. I'm dizzy all the time. I live half my life in the bathroom. I think I have new tumor on my spine, or maybe an old one that is now presenting externally. I felt this one when my little doggie Jack sat behind me in a chair, and leaned against me, and wow, I nearly jumped out of my skin.
I want so badly to be me. The me that did anything, went anywhere, worked there, worked here, did chores, did everything around our ranch. Just did, and didn't think twice about hurting myself, because I was strong, I rarely got hurt. Seems like any time I do anything now, I tweek something, and I'm "punished" for my try, for days. I reach up, I lean over, I do any "normal" activity, I sneeze, I cough, I live.... and boom, something is tweeked. I hate pain. I hate suffering. I can handle this dang cancer sentence if I can feel ok. But pain. Pain is so painful. I dislike taking pain meds. But I have to take pain meds. My head hurts as I type right now. A deep pain in my R side head where this crazy "mass" is. My neck hurts, my back hurts, my toes are numb. But yes, I know it could be worse....
My Dr called me yesterday, or the other day and wants to expand the MRI I am due to take, have been supposed to take prior to the Virus. The scan will be my Brain, my Head, my Skull, my Neck, my "Cervical Spine", etc etc. Yes, without and with contrast. I'm on the phone scheduling my appointment, asking questions about the Gadolinium contrast dye, and Suddenly... cleanse time. I never talk on the phone in the bathroom, but I didn't have a choice this time. Lovely!
I don't have cramps, and often no warning. Just a sudden "gotta go now"! This is another reason my life is so edited. How can I do anything, if my lower GI is always out to sabotage me. And this is Thursday after Monday's chemo. 1,2,3,4 days later. Yes, I barely have 2 or 3 ok days each week. And no, I don't want to take Imodium all the time, as my body needs to cleanse out from Monday's treatment. Cleanse out the chemicals, the meds, the dead cancer cells, etc.
I'm so sad. So sad about what happened to my life, half way through my life. Some days I think about what it would be like to just stop this madness. Then I quickly stuff those feelings. I live for everyone else, not me now. I am doing all I do for everyone else. I don't have that feeling of personal reward any more. My life is completely selfless now. I am treating and staying alive for those that love me and need me, human and animal. I hurt, inside and out, but I can't give up or give in. I just can't. Not yet...
I really feel the ravages of 10 and half years of Myeloma chemo treatments. I feel the toll the meds and the cancer itself, has taken on my body. I feel the tumors and lesions in my body. I feel like I don't own my body anymore. Myeloma owns me. I wish I could just see inside and see how much Myeloma has taken over. I will see some on the MRI to come. But I "feel" the mass in my head. I feel how it is pushing on things inside my head. Headaches and head pain non stop. It's not a "regular" headache. It's different. It hurts. I feel pressure. Bones, nerves, muscles hurt too. Everything hurts. Yes, I am kinda scared...
So I am not sure if the Elotuz Emplicity is causing all the pain and muscle weakness. Maybe it's the combination of oral and IV Dex steroids, as I take 28mg in pill form before my Monday IV infusion, and then along with the infusion, they give me another 8mg via IV. Who knows. I didn't have this pain early on with the Revlimid. Maybe the pain is good news and means the meds are attacking the myeloma!!!
Julie, I'm so sorry. You're an amazing person and I appreciate you sharing your experience. I feel like you're sharing what I am feeling. Our paths and how we view our disease are so similar. Take care, be well and we'll chat soon. Sending you love and hugs.ReplyDelete
Hi Matt, thank you for your kind words of support and camaraderie! It is amazing how this awful cancer brings like minded spirits together, and I am so happy we have connected as we have. Hope you are doing well, and feeling well and pummeling myeloma! xoxoDelete
Dear Julie, Thanks for sharing your news and what you are feeling right now. You are courageous to be so unblinkingly honest. I'm very sorry you are having to go through this relapse, but there is optimism for this new line of treatment. With your photos, I'm so glad you have captured beautiful images that clearly give you joy as you are struggling to cope. I know you will keep on trucking -- you always do. Sending you a cyber message of encouragement!ReplyDelete
Hi Aurelie, so nice to hear from you! Thank you for all your support and kind words! Yes, I try to find joy and happiness everyday, as this dark cloud tries to consume me. I just want to live, and be painfree, and enjoy each day. I can live with being on continual treatment, if I can feel halfway ok. Hoping you are doing well, and myeloma isn't challenging you too much! xoxoDelete
Dear Julie, So sorry you are so beat up right now and struggling with personal physical issues as well as hubby's. How you manage to be so transparent about your challenges yet find the good in your life just shows who you are in spite of myeloma. Who knew all those years ago when Jim was planting and making your ranch so beautiful, what it would mean to you today. I know you draw strength and comfort from your beautiful property and your animals. So Jim is still blessing you every day even though he may not be aware of it. Thank you for you honesty and transparency through it all. Love you, CarolReplyDelete
Aww, thank you Carol! Yes, you are so right. I am so very fortunate to have the beauty surrounding me, while being so challenged with this awful cancer. I think all the time of all the people struggling on so many levels, while not having the natural beauty surrounding them, replenishing them, as I do. Yes, Jim worked so hard, with so much love invested here. So sad that he cannot enjoy as he once did, but as you say, we are so blessed to have the beauty and critters we do, to give us joy and smiles. Hope you are doing well, and life is happy and healthy for you and your family xoxoDelete