I'm just so exhausted, overwhelmed, kinda broken on several levels, hurting, aching, still coughing, mentally fried, and just overall beat up....
See, yesterday I spent most of the afternoon in Urgent Care for my hubby... I haven't shared a lot of his medical woes here, as I devote this blog to my Myeloma journey, and all things related to my Myeloma status, not all the "other" life adventures and challenges I have.... but as Jim's body continues to fail him, sabotaging and betraying him physically and mentally, it is affecting us, me, more deeply all the time. I can't keep hoping things will "get better". I must accept our reality.
The crazy thing is we are BOTH declining more quickly, more recently, in the last few years, months. Things seem to be changing fast. I didn't expect it. I should have. He's significantly older than me, so I knew he'd have "old guy" medical issues as he aged, but he was always such a rock, so strong, so capable, such a doer... of everything. I just didn't expect his body to fail him so completely as it has, is... Yes, I expected him to slow down, but I did not "expect" his body to completely betray him as it has... and the effect on both of us is monumental...
I have to admit I was quite "spoiled" all our lives together, as he was such a hard worker on so many levels. He loved to work and care for others. In business, around our ranch, shopping, cleaning, gardening, building, fixing anything and everything. Taking care of everyone, human and animal. Jim did it all. There wasn't anything he couldn't do, and he wanted to do everything for our family and for anyone in his life. I worked, he worked, our life worked. He worked so hard, taking care of himself was last priority. Over time, our kids and I noticed he'd "forget" to eat and hydrate, as he was always so busy doing doing doing. He'd "Forget" to take care of himself when we were gone at work and school. He'd be so busy doing so much for all of us, he'd neglect himself. At first we joked and laughed about his "forgetfulness", then over time, it wasn't so "funny" anymore, it was worrisome. He'd be so busy, on the move constantly, chores, shopping for all our household needs, he wouldn't stop until all of us were home. He loved doing and being busy... He'd say he "didn't want to eat alone"... But eventually, it all caught up with him.
Jim has survived many serious health issues himself. He's had several serious blood clot incidences. Early in our relationship, he fell while learning to ski, and the binding hit his right lower leg hard, resulting in vein damage and blood clots in that leg. I don't think either of us realized the seriousness of it at the time. He was hospitalized for a week, then all was "fine". About 8 years later, he had another incident where he was hospitalized for several days, then was "fine" for years. Then in 2008, a year before I was diagnosed with Myeloma, he almost died from blood clots in that same leg, that also migrated to his lungs. He was hospitalized for a week, and put permanently on Coumadin. He is also a 19 year prostate cancer survivor. He always thought he'd be the one to "die" from cancer. As a result of all his hard physical work all his life, he has spinal stenosis, arthritis, bursitis, rotator cuff issues, he was supposed to have knee replacements, etc. But he always worked through everything, and had a very high tolerance for pain. To a fault. He believed the more you hurt, the harder you work, to work it out... ignore pain, always keep moving, doing.
Over time, his body finally rebelled. His body told him to slow down, but his philosophy did not. We'd come home from school and work, and see him limping around, still doing a ridiculous amount of ranch and household chores. We'd try to get him to slow down, rest up, relax... but that just isn't who he is. All the beautiful pictures of our yard I've posted in this blog, are because of Jim's hard work and "green thumb" talents. His legs got so weak, the pain so intense, he just couldn't do what he used to do. Soon he didn't have a choice, he was forced to slow down. We also noticed "weird" cognitive things. His communication changed. We laughed at that too, and called it "Jim speak". He started not using nouns. Think about it. Try communicating, without nouns.... We'd laugh. And try to figure out what he was trying to say. It was comical. He'd ask, "are we going over there, for that, with them, to do that thing?" No nouns. He continued with all the chores, almost too habitized. We also realized his hearing was going, going, almost gone. We got him hearing aides several years ago. He slowed down even more. Was more distracted, things that used to come so easily to him, were now confusing. His legs caused him even more pain. He developed "venous ulcers" where the blood clot damage was. He had severe, disabling pain in legs. He was forced to slow down, and we took over more and more of the chores, more and more of everything he did... He fell several times, and had difficulty getting up on his own... his ability to do what he used to do... has all but disappeared... he has declined exponentially, last year, and especially this year. His body and mind have completely failed him, and it's so so so very very very sad... and the impact on all of us is monumental...
2011- Our first lake trip after my stem cell transplant
See my darker hair under the fake hair hat :))
I really wasn't going to write this much....
Anyway.... long story short... I have become his "caregiver", along with our kids, and kind offers from dear friends, home health from Kaiser, etc,. All the chores he used to do, others do now. Basically everything he used to do, he cannot. He tries hard to do some of the things he used to, but it's just not possible for him. As a result, I am exhausted, overwhelmed, and have a new reality on my situation and his... Yesterday, we spent the afternoon in Urgent Care for him, for terrible body bruising and pain, as a result of a terrible fall he had last week. I was going to post a picture, but it's just too shocking...
While pushing him in a wheelchair, and navigating his medical care for him,.... reality completely slams me, again... I realize how far "gone" he is, and how beat up I am from the ravages of myeloma, chemo treatments and bone pain from all my tumors, lesions, plasmacytomas, fractures, etc,... I can't fully care for him, and he can't care for me. We're struggling to care for ourselves, let alone, each other, as we once did... It's really so crazy, so sad, so not what it used to be. I tell the DRs and RNs we are so different now, so not who we used to be, .... Our bodies have failed us, in different ways, and I must accept how "ill" we both are, accept we are not getting better... as neither of our situations are "reversible"...
I always remind myself of my motto/quote I live by: "You Can't Control The Things You Can't Control"... Things are what they are. We can treat it, but we cannot "change" it. I analyze everything, try to understand it all, and deal with the emotions that come up as a result. Yes I get angry, sad, frustrated, and yell at the Universe- "Why Me"! But ultimately, I can't change what has happened to us... I just move forward,... One Day at a time, One Issue at a time...
The reality of my 9 years of being sick continually, hits me me more and more all the time. My longevity is amazing, but I just can't do what I used to. I try, I "sign up" for things and have moments when I think I can be who I used to, then I am humbled. Humbled by how "sick" I feel so often, and how ridiculous it is to push myself, when I shouldn't. I have pain like I never had before. I fracture bones now with just a cough. Which by the way, the story I told you in my last post about my most recent cough, which brought me to Urgent Care because of the excruciating pain,... was in fact confirmed that indeed I did FRACTURE a Right side Rib!
And I have more pain in my hips, legs, back, etc, all the time. I think I've had this for a while, but it comes and goes, since I do the 20mg or 40mg steroids each week, and that gives me a "fake reprieve" from the pain, tricking me in to thinking I'm more ok than I am. Plus I still think Zometa triggered something, as it seems all the pain revved up since that terrible initial reaction in July,.
So all this brings me to so many realities of my life. I am still and always so very grateful for the "good health" and "good times" I still have, but I am realizing more and more, 9 years of Myeloma has taken it's toll, and I must accept my future reality... as my Pet CT Scan, MRI, xrays, etc, don't lie.
The good news in all of this, is that Velcade and Cytoxan-Cyclophosphamide is not causing me extreme side effect drama... yet lol, as I am still not taking the full dose of Cytoxan, as with the rib fracture, and other bone pains, I just didn't want to take the chance of "getting sick" from the full dose, and fracturing something else, if I got sick! The pills are 50mg each, so the first week I took 3 pills, which equaled 150mg, then this past Monday I took 5 pills, which equaled 250mg. Go me lol! I did find studies online documenting low dose is quite effective... but we'll see if I'll up the risk, and take more this coming Monday... will all depend on how much bone pain and rib healing I have. But then again, my Birthday and Thanksgiving is coming up, so I certainly don't want to suffer that week! Ugh... why, why, why... I'll never know... so one day at a time, one challenge at a time... and I absorb my reality more and more each day....
Hello 5 pills this week
with bearable side effects
Thank you Velcade for not causing me
horrible Neuropathy or other awful side effects
And as I wrote all this...
I've been watching the news all day about the horrendous ambush shooting of innocent people at the Borderline Country Dance Bar and Grill
, and also the awful fires burning up homes, neighborhoods and lives.... In light of all of these tragedies, my challenges are minimal... I feel sad about what has happened to me and Jim, but we are here, have our life, our family, our home, amazing medical insurance... I am grateful always!
Here we are, riding in our local parade, 1983
Julie, this is Jewell. I am so sorry to hear about your husband's health. When we are young, we don't think about all the challenges we will face as we grow older. When I look back over my life though, I realize it has been a good one. The memories of the good times help with the bad times we face now. Thinking of you and wishing you well with the Cytoxin.ReplyDelete
Hi Jewell, yes you are so right, so much good and so much to be grateful for, on so many levels. Guess I was a bit too naive and perhaps too optimistic regarding us aging unscathed lol...Delete
But for all of us battling myeloma, so much amazing medical progress keeping us alive... I just marvel at what our bodies can handle, no matter the disease. Hope you are feeling ok with your treatments. Battle forward warrior friend, and thanks for checking in :)) xoxo
I am so sorry to hear about Jim's decline. It is upsetting when something like this happens to our loved ones. I can't imagine how you must feel. I hope for the best in the time ahead for you both. Is there a chance of selling the ranch and getting something smaller??ReplyDelete
Hi Christina, yes, just so shocking how fast the decline... I just wasn't "expecting" what we are both going thru... and no, selling or moving isn't in the plan, as our kids are close and help with everything, and will even move back to assist... we are just processing all the "what ifs". However there are times I do think how "easy" the "assisted living" communities sound lol... but if we lose our mobility... that's the "breaking" point for us...Delete
Thanks for checking in, hope you are still in remission, and MM is in your rearview mirror :)) xoxo
Julie, thanks for sharing from the heart...and the heartache. Words that need to written and shared. So many losses with MM, with Jim's health issues, with dreams that need to be changed. Love ya cowgirl, JanReplyDelete
Hi Jan, thanks for always appreciating my writing :)) I write spontaneously, from the heart, and from shock and surprise. I still feel what has happened in my life is an out of body experience... but with all my bone issues, things are getting more "real", which seems ridiculous, in light of 9 years of treatments. But the visual of the scans, xrays, the Drs recommendations... now really affecting me, as is the reality of Jim's daily decline...Delete
But we power forward, each day, hopeful for good news,... and of course fuzzy muzzles, nickers and hay breath, rejuvenating our spirits :)) Hope you are doing well, and your treatments allowing you to be you! :)) xoxo
Julie my heart hurts for you and all that you are going through. Sending good thoughts and prayers your way. May angels surround you and your husband as you continue to battle this crazy life. Thank you for always sharing positive comments on my rare posts.ReplyDelete
Hi Kristine! So good to hear from you! When you don't post I worry, as you were one of the first blogs I found when I was Dx. We have "lived" this journey together, and I am soooooo thrilled for your great news, health and long remission! Just so amazing after all you went thru. Thank you for checking in and for all your good wishes. I do feel Angels surrounding me, at the most remarkable times :)) Stay well, and enjoy every second of your beautiful life xoxoDelete
Sorry to hear about yours' and Jim's recent health challenges. I am sending good thoughts your way and hope that you have or can find support to surmount or endure them as well as may be. I love that you try to stay positive even with all this going on...Hugs, BernadetteReplyDelete
Hi Bernadette, thank you for checking in, and all your good wishes! Yes life is challenging, but I am so grateful for so much, which keeps me positive. Thank you for appreciating that :)) Yes, I have my frustrated "why me" moments, but I always look at the "big picture". So much to be grateful for, especially coming up on my 9 year Dx anniversary. Hoping you are doing well, and feeling well, let me know how you are! xoxoDelete
Oh, Julie. Thank you for your openness. My heart hurts for you watching Jim’s decline. Where is my magic wand? I so want to make things less painful. I appreciate your realistic view. As my Quaker friends say, : I am holding you and Jim in the Light. xo. FernReplyDelete
Awww Fern! Thanks so much for checking in! Yes, please find your magic wand... can't find mine either ;) Thank you for appreciating my "realistic" writing. My friend Reality has been in my face for longer than I'd like... and I just shake my head in amazement of what has happened. I should still be in my "corner office", looking towards "your" Library, and us trying to figure out a time to go hiking together :)) So much for "Reality" right ;) Thank you for all your support, and "Light" xoxoDelete
I am so sorry Julie. Thank you for sharing. I'm sending positive thoughts out to you and your husband.ReplyDelete
Thank you Matt for your positive vibes, and appreciating my posts! We're on this crazy myeloma ride together... I'm so happy for your "cruise control" with your current treatment. I really enjoy your posts too! Stay well :))Delete