Infusion time again. Long days. But today I am being comforted by Matthew at my side of course AND this fabulous quilt my dear friend Lisa Haubenstricker, her daughter, Jessica Haubenstricker, and my former co-worker and friend, Heather Roth made.
I still have to get used to not using a mound of shampoo/conditioner. I feel I’m wasting a lot!
My mom and aunt were in a store the other day talking about their disbelief with what I’m going through. Some stranger came up to her and asked her if her daughter’s name was Rachael Sova. She was taken aback but said yes, why? This lady said her sister, in her 20′s, was recently diagnosed with breast cancer & that she was not willing to fight, wanted to give up, got really depressed, etc. Let me tell you, as some of my posts have, I was SO there. This lady said through a friend of a friend of a friend kind of thing, she was shown my posts. Turns out, they helped her and gave her the strength to go forward & fight. I guess they went to lunch and her sister was actually smiling again. It is because of her that I’m writing these posts. If I have been able to help this one woman, this fellow future cancer survivor , getting this terrible disease is worth it.
Yesterday I put on a bandana and tucked my hair in to “test it out” & ended up having my first all out breakdown over losing my hair. Like the gasping breaths breakdown. In a panic, I rubber banded a much of chunks to cut off to save (like I was going to be able to save my full head of hair – it was a moment, and a little ridiculous). It’s very real now & I’m human. It’s healthy to feel the grief. And I will be okay. I hate my hair blowing in my face in the wind (like I do not drive with windows down or like convertibles for this reason) but last night I closed my eyes & let the wind blow my hair around… And let myself enjoy this happening. Today it is coming out more in clumps so it shouldn’t be much longer. It’s a tough place because I don’t want to let it go, yet this bits at a time is almost more torturous. And yes, I can shave it off, or cut a bunch of saved clumps off haha, but I kind of want to experience the natural progression.
For the upside, with my hair not growing, I shaved my legs & pits over a week ago and still barely have stubble – bonus!!
So I am losing one strand at a time of hair. I don’t usually lose a lot of hair on a normal day to day basis but I’ve been finding them everywhere. Before it’s gone by the end of this week, I left my hair naturally curly yesterday and had Matthew find the most perfect curly lock. He tied it off with the pink ribbon from our wedding invitations and cut it off at the scalp. And it didn’t bother me. Now I have a fuzzy buzz cut area. I’m super fashionable these days. It’s amazing how things that were once a big important part of my life, such as my long beautiful hair, are now the “little things” that I can let go of (for now, because it will eventually grow back). Cancer perks: 1. I’m stepping out of my box. 2. I get to try every hairstyle from bald to long again when it grows back unless I find one I like in between, I might stay there
So I’ve had more bad days than good. Sometimes I think if the cancer doesn’t kill me, treatment might. I’ve had days when I felt I was going to die and other days I wished I would. Yesterday was my 1st really good day. The worst symptom was fatigue. But I ate 3 meals and kept them all without pain. Today I lost my first visible clump of hair. It’s not estimated to fall out completely until this coming weekend. But the sun is out today and I’m aiming for another good day.
If I had to pick one word; hell? misery? suffering? All good & valid options. Matthew called me a “silent sufferer”. I like that. Not for a reason of pride but because there are no words I feel I could say to give justice to what I’ve felt. And even though I’m getting a 4 med regimen in my infusions, I’m told it’s not even the worst chemo out there. Aside from the expected bedridden fatigue & nausea/vomiting, there has been debilitating heartburn. No lie, debilitating. Even through taking 2 OTCs regularly and eating Tums like M&Ms. The skin pain. OMG the skin pain. From my scalp down, my skin felt like I was on fire. The slightest touch of clothing, moving my arm, touching my hair resulted in an intense, the-worst-sunburn-pain-ever feeling. I couldn’t wash my hair/shower, or change my clothes because it hurt so. bad. The bone pain… Oh the bone pain. Like growing pains & flu-bone pain. I beat my fists on my femurs, hips, knees, squeezed my knuckles in an effort to make it feel better. Sad I know. Peripheral neuropathy – nerve pain & feeling like I might drop what I’m holding. I felt healthy before this & actually wanted to “feel sick” to “make this real”. To destroy my body with poison for this cancer is bizarre & disheartening. Abdominal pain – I can’t even describe it. Sharp pain, heartburn, upset, ache, crampy, bloated, nausea… There was also constipation for several days which has changed to confined to my home near a close bathroom diarrhea. Believe me, I think I have every OTC med there is for everything. I have an estimated 1.5 weeks left with my hair but it already feels weird. Maybe it’s the neuropathy, maybe it’s changing but it just doesn’t feel right. Insomnia – I’m so tired, yet uncomfortable.
No matter what I do, I cannot get comfortable: lying, sitting, walking… I feel like I want to stand in the middle of the room and cry, but I’m too tired & probably too dehydrated now to even make tears. Oh and it turns out I have a pretty nice adhesive allergy so around my medport (still) I have a terribly itchy rash from the dressings. It’s driving me crazy.
I may have changed from “one day at a time” to “one moment at a time” but I’m still going. I don’t know how sometimes but I am. My oncologist says the symptoms are cumulative with very treatment. Super. Since Wednesday I have lost 7 lbs though. There’s a cancer perk.
Yesterday Matthew and I played Showcase Showdown, guessing closest to the size of my biggest follicle without going over. He had the right ovary, I had the left. He won. Dang. Our fertility specialist doctor found it hilarious. I think the medical student may have thought we were crazy though. Making fun out of a bad situation!
So yesterday I had an echo since one of my meds can cause heart failure. The lady asked if I had one before. I said yes, 1 yr ago, as I had a new grade 3 systolic murmur. She was fine with that until it came out that I found it myself. She says, “oh, you found it? You probably just heard breath sounds.” Me: “I’m sorry, I think I just hallucinated. Are you saying that I do not know the difference between heart sounds, murmurs, and breath sounds? Really. Wow. I worked in open heart recovery. I knew what it was. I had a CV surgeon and PA, & my PCP listen and all agreed it should be checked out.” Ten she says: “Echos are ordered too much for nothing.” I enjoyed this as much as the multiple nurses trying to draw my blood who miss multiple times tell me it’s because I’m dehydrated. What?! I have been purposely drinking PLENTY and the vein is RIGHT THERE!!