My head has been exploding with thoughts, musings, ponderings, and overall life realizations and recognitions. (Ha! so what else is new, right!) The other day, in my overwhelmed feverish state, (yes I had a fever again!), I was going to post a raw frustrated, depressed, yelling rant about my current circumstances, but you were saved by how awful I felt. I really wanted to unleash and vent, but good thing my lack of health and helium prevented an unfiltered post. This spontaneous post is a "healthier version" lol.
So what the heck happened to me, you ask?
"I Don't Know!" she wanted to scream!
I Really Don't Know What Happened to me! But I felt so awful... again, yes again.
Did I experience an extra long chemo/steroid crash? Did I get public cooties contamination from my break week of marathon, unexpected, out of the ordinary (for me) experiences? Did I have some other freak physiological thing happen? I Don't Know What Happened. But here's what happened:
Following my crazy break-week of activities, the week where I (somewhat) let my antibacterial guard down, where I actually lived life, participated in life and did "normal things", normal things that shouldn't seem so extraordinary at all. Just doing things and going places. Living life normally. "Doing" is often extraordinary to a cancer patient in continuous treatment...
And then... I wound up sick with a weird fever thing! Why Myeloma, Why?
Yes, following my break week, I returned to the chemo lab, had my doctor consultation on Monday, and did my regular Kyprolis + Dex for 2 days. As usual, I began my slow crash decline on Wednesday, feeling more yucky and blah on Thursday. Thought I would rebound a bit Friday, but I didn't. I didn't rebound at all. I felt drained, exhausted and strange. Thought then I would rebound on Saturday, but didn't. I felt so yucky and I couldn't figure it out, but I "forced" myself to think I was ok. I thought, if I do what my "head wants to do", my ill-feeling body, will follow. Go. Go live life I tell myself. Push forward. Go. Try to get out and about, even if for a tiny bit, I tell myself. So I pushed myself forward, Jim and I going for a ride in my lil Bucket List Bug, to visit a friend to deliver my crazy healthy Yam saplings, that had turned into amazing, reaching for the sky, vines. My friend Kathy and her husband Scott were the perfect "adopters", as they had a beautiful thriving garden. These vines grew from yams left too long in our pantry. Amazing! Nature's will to live, on all levels, is so remarkable. These vines, so desperate to live and thrive... just grew and grew! Yes, analogies of life's will to live, surrounds me all the time.
I felt really strange all day. I didn't have much energy or focus. I was dehydrated, parched, headachy, and achy all over. I kept thinking it would pass. I kept thinking I was just exhausted from my past week of "play", piled on top of chemo and steroids, piled on top of the typical evil crash feelings. Nope Nope Nope. Something weird was going on. But I refused to think I could be "sick".
We left our friend's house after a lovely visit, and I "forced" myself to drive my lil Bug the long way home to "exercise" her just a bit more. Poor lil Bug, never gets out much any more. Never gets to go to car shows anymore. This makes me realize how I have "declined" over the years, becoming more limited each year. As I was driving, I was achy, and headachy, blurry and fuzzy. Just shifting was an effort, where it's usually fun and reminiscent of my Malibu beach days . Everything was an effort. I knew something was up, but I refused to accept it.
We get home, I force myself to do minimal horse and animal chores, all the while knowing, I was not well at all. Something was up. Parched like the desert. Achy, dizzy, yucky. Rumble rumble went the GI. Tried to eat, but something told me not to. Hello bathroom for hours. Hello PeptoBismal. Hello weird GI stuff. Hello dizziness. Hello FEVER! Hello weird heartburn. What the heck? I don't know. I didn't know what was going on. Restless sleep. Not much sleep. Felt really yucky. Yep, I have a FEVER. What The Heck?! A Fever? Nooooo, not again!
So all I could do Sunday and Monday was succumb to my physical awfulness. Everything was an effort. Living was an effort. Everything I needed to do, was an effort. I HATE FEVERS. But I know they have a purpose. I coaxed and cajoled my fragile immune system to rally. I begged my fragile immune system to rally, to fight this invasion of whatever. My fever went from the 99's to the 100's. I thought I was in for a "February Fungus" redo. I pleaded with my body to rally. "Please body, please rally. Please don't get too sick. Please stop making me feel so awful". All I do is suffer. What's up with all this suffering. Why me? What did I do to deserve this. Why am I always sick? Why do I always feel so yucky. Cancer yucky. Chemo yucky. Steroid yucky. Recovery yucky. Why body, why are you doing this to me? Why can't I be ok? Why can't I be normal. Why? Why me? I crashed mentally...
My fever topped, then stopped at 101. Then it began to subside as quickly as it attacked me. Late Monday night into Tuesday I began to see hope again. I began to think I could make it. I began to think life was still worth living. I began to see hope again. I couldn't stand seeing my face in the mirror in the bathroom. What has become of you Julie. You're so sickly, you look awful. Your hair is thinning, your skin looks like "death warmed over" (my dear Mother's term), your life has been taken over by cancer and cancer side effects. The counselor is counseling herself to be ok: This too shall pass. You're better off than so many. You're very fortunate in so many many ways. You've beat myeloma back for 6 and half years now. You can do this Julie. You can be strong. You have so many that look to you for support. You're supposed to be a role model. So many need you. Your story's not over yet. Stop the pitty-party Julie. Buck up. Cowgirl up.
And so slowly I got little better. The achiness subsided. I felt hope again.
Even when I feel awful, I've learned to still try to eat a little something. How can my body rage war against the invaders without fuel. But ugh, not much appealed. And water, ugh. I am so TIRED of drinking drinking drinking water. I am so tired of being so darn thirsty all the time. Sometimes I just rebel, and don't hydrate as I should. Dumb. Well I guess I got paid back for that too, as this stupid fever thing was accompanied by crazy heart burn like non other. Like the type that suddenly wakes you up at night, and you bolt up in bed, startled awake with that weird shocking sizzle in your throat. Oh, yes... I remember you, you stupid awful acid reflux. I remember you from my Stem Cell Transplant side effects Summer 2010. Why oh why is this happening to me.
I'm better today, tonight. But at the depths of my awful feverish yuckiness, I wondered... wondered what is the "purpose" to what I am doing. Six and a half years and counting is a long time to be in continuous treatment, with NO end in sight. No reprieve. No "end date" until my End Date. Incurable cancer is daunting. Overwhelming. Treatments for life, for the rest of my life, if I want to have a longer life. Imagine, on treatments forever and ever. Continuous, continual treatments. Side effects for life. Sickly most of the time, for life. Sudden, random, unexpected GI stuff. Rarely feeling well, for life. Crazy how feeling well takes me by surprise. Imagine yucky side effects for life. Fatigue forever. Imagine all this.. Is that a way to live? Is that living? Is that being alive. I ponder, Quality vs Quantity. It really hits me sometimes. But I know, I must battle forward. I must and I will. But I do now understand why some choose to "not treat". I'm no where near that choice, but I understand it deeply. I know the desperation for "normalcy".
It's Wednesday night 6-1-16. I'm better, and will get better as each day passes. I must! I have weddings to attend, a life to live! But it's back to Mon Tues, Mon Tues, Mon Tues treatments next week, and the cycle of yuk starts anew. My life so limited now, compared to who I used to be. I morn the ol me. My cancer status is still incomprehensible to me. Life limitations have crept in over 7 years. I tried so hard after diagnosis for "normalcy". I tried to accept my "new normal", but my reality impacts me more often now. I don't like it. I don't like it all. The impact of my situation, my condition, my limitations hit me too often, as it seems I feel less well, more frequently. Yet, pulling myself out of my feverish dark cloud, I see the beauty all around me and I am so very grateful to still be here. I regain my hope and optimism. I am one of the lucky ones and I know it! As awful as I often feel, I am better than so many. But I am tired of the battle. Tired of the feeling sick and always fatigued battle. I am tired on so many levels. Tired knowing This Is My Life From Now On...
I will battle forward, not to worry. That's me. That's my nature. I know I am of the very lucky club. I am frustrated, but I am very very fortunate to still be here, as I am, how I am, where I am, and with the options I still have. Truly I am grateful and thankful, no matter how frustrated I get, living with this forever cancer.
Thanks for listening my invisible friends... I'm ok... I'll be ok.
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!
Julie, you soldier on despite it all and it is admirable, indeed. I think you are a great role model for us all. You always rally. I can understand your feelings all too well. I am only beginning the third year of myeloma, and there are days I feel really beaten down, even though I am so very luck to be in CR. I am just recovering from the flu, in April, which turned into asthmatic bronchitis in May Of course, I'm sure this never would have happened if I did not have myeloma. I try to take care of things as soon as they happen If I am not feeling well, I call my onc. or internist to let them know. Sometimes they can prescribe something that will help, but I feel it's important for them to know my condition. I don't mean to criticize you, but when I read your posts, it seems to me you try to battle it out alone. I understand that. You want to be as normal as possible, and not involve people in your illness as much as possible...that way you can deny the realities But, we are NOT normal. Never will be again. I find it hard to accept too. When I get a fever, I ALWAYS call the doctor. Sometimes you have to skip a treatment, sometimes not. You are a brave, kind soul, but you need to take care of yourself, and not worry about how it looks. You are not a whiner. You have good reason to be cautious with your health.
ReplyDeleteSo please.....take care of yourself. Pay attention to your body when it's trying to tell you something. It's important.
Love your blog. You are an exceptional human being!
Aww, thank you for checking in Ellen and your caring supportive words! I agree with everything you said! First of all, I am so happy for your CR! I hope that status lasts a looooong time for you! Keep doing what you are doing, as it's working!! I appreciate your words of encouragement and support. I am very hard headed about being an "alarmist" when I don't feel well. I know I should alert my Drs sooner than I do, but I am the "watch and wait" kind of cowgirl. I grew up with barely an aspirin and next to no antibiotics thru out my entire life prior to MM. My parents were "old school" and believed in "toughing things out". They prided themselves on their good health, no novociane at dental appts, etc. My mother lived to 88 and my dad has more spit and fire than me, at almost 90!
ReplyDeleteYou would laugh at how I "let myself suffer" with minimal meds during my SCT. What a goof I am, now that I look back on it lol.
Thank you for all your kind and insightful thoughts Ellen, I really do appreciate your comment! ps- we have Goldstein in common! Thank you Ellen! xoxo