When I first saw this topic I finally thought, hm… I don’t know what to do with that. But then I soon though of how storms come upon us in life and it can feel like waves.
Wave 1 – Cancer – at first we thought it was just ovarian cancer, in/out, and all done. Boy were we wrong about that. Turns out to be a rare form that doesn’t go into remission and eventually the chemo or the cancer will kill me. Probably 4 to 8 years. That was a doozy of a wave. Of course, it helps that I’m not afraid of death and I’m ready to go home. We are fighting for as long as quality of life is acceptable, and then I go home. But it’s been a hard hit for friends and family who aren’t ready to see me leave yet. That is when I cry, thinking about all of the people I’m leaving behind who will be sad.
Wave 2 – Ileostomy – the gynecologic oncologist tried so hard to avoid this, but it became unavoidable. The tumor/mass was pressing against both the small and large intestine and food couldn’t pass. Not good. Vomiting after you eat is called a disorder 🙂 Now I’m trying to see if that can be reversed, but we won’t really know until he opens me up again and gets a good look at what’s in there.
Wave 3 – hair – I was told I wouldn’t lose my hair, but it thinned so much it was prettier to shave it and start wearing hats and caps. That hasn’t been too hard and friends have provided lots of resources and advice, which helped. But to think it wasn’t going to happen and then end up bald anyway was a bit of a jolt late in the game.
Wave 4 – chemo. I can’t really complain about my side-effects. I don’t have nausea which is a huge blessing. I have finally started having some neuropathy in my feet but so far it’s manageable. I lost my hair, but that was more or less voluntary when it thinned so much. I have dry mouth, which takes some getting used to, but I can live with that. Still, the fatigue and sleeping for an entire day every few weeks is weird and disrupting.
Wave 5 – LTD and SSD – Having to apply for Long Term Disability (which got approved today!!!) and Social Security Disability has been a fun exercise in bureaucracy. SSD is still delayed until Dec 4, although I’ve been told stage 4 cancer is an automatic approval. Oh well, guess not yet for me. I also upgraded my work computer but it didn’t go smoothly and I lost some stuff I should never need again, and got the stuff I needed to work. But I forget to boot it up and claim like I should. Just takes so much mental energy, which is where my fatigue is most obvious.
Wave 6 – singing – I didn’t have energy or the voice to sing in the choir for a few months. It wasn’t until middle of August that I got my voice back. It was weird not even being physically able to sing. But it is nice to have the voice back and to be back in the choir every Sunday where I worship best. I worship so well through song. I am there for the sermon and to offer my love and obedience to God. But I sometimes express myself best in song. And our church has a great song ministry in the anthem and hymns. I don’t have breath support to do all of the hymns yet, but it’s coming.
Wave 7 – Cataracts. I had issues even before the cancer. In fact, exactly one week before the cancer diagnosis, I was told I did indeed have cataracts in both eyes and needed surgery. A friend asked if I was overwhelmed. A week later I sent her a text for Throw Back Thursday saying “remember when we though cataracts were overwhelming?” Boy, did Cancer put it all back in perspective. But it also greatly accelerated my vision issues so I struggle to read even more than before. I will be happy to have the cataract surgeries 11/17 and 12/7!
Wave 8 – Medical expenses. We have a high deductible policy because we never get real sick. Well, we paid that $10,000 with the first surgery in May. Everything since then has been essentially free :-). But things will change with 2016 and my LTD policy. And we are still out $10,000 this year plus other non-prescription items to help the healing process. We are actually looking at getting that amount from my 401(k) since it was all medical expenses. But it’s been a strange year and next year will be a new adventure figuring out what is covered and how.
Wave 9 – Mom – some of you know my Mom was in the hospital in April and then went into a rehab center near me for May – Sept. Then into my house for about 4-6 weeks to finish home health care before she went home. While it wasn’t a huge burden, it was a little bit of a worry and I would have done so much more for her if I hadn’t been going through my own surgeries. Blessings there have been my thoughtful husband driving straight to the rehab center after my surgery to sit with mom face to face and explain what they had found. And my friends making blankets and quilts for her when she expressed appreciation for the ones I had from friends. And we had some great talks while she was here in the house. We covered serious subjects and laughed at silly subjects.
Wave 10 – my husband – I hat what this is doing to him. The time he’s having to dedicate to me, the exhaustion and fatigue he’s feeling, the sadness that he will lose me years before we expected. But he is a fantastic caregiver. He has come up with ways to keep me warm, tolerated hotter temps in the house than desired because of me, bought food to meet my every whim while trying to gain weight, drives me to Charlotte for every appointment, helps keep up with the paperwork, dealing with his own hearing loss. But he knows how to spoil himself as well. He knows when he needs a break, some time at the Draft House with a friend, etc. And his friends have taken good care of him. Charles and Pastor Lee have taken him out regularly, church friends check in on him, send him cards, and offer support and encouragement. It’s been good, but it’s still been an impact.
Wave 11 – weight loss – I weighed 140 in January. While I was nauseous and lost a little weight in Feb and March and April, I estimate I still weighed 130 when I went in for the first surgery. By Sept I weighed 80 pounds. My body was just not absorbing nutrition from what I was eating. I tried an appetite stimulant, and ate 3500 to 4000 calories a day for a few weeks and still lost weight. They finally put me on TPN, IV nutrition, and I am back up to 102.5, finally in 3 digits.But we still have a long way to go to get to 130.
Wave 12 – peace – I was worried about being an introvert with a lot of people trying to love on me. I was hit with a diagnosis of death at a young age, I had a mother in rehab trying to recover from her own issues including MRSA, I had friends I had to talk to and explain the reality to them, I had an ileostomy bag that I truly dislike. And yet God has been with me through all of that. I haven’t really gotten upset by any of those big issues. It’s been the daily grind of getting through the pain or just passing the time when I can’t sleep, or losing time when I sleep so much. Those drive me t my knees in prayer and He is there every time. I, like many of us, do a better job of trusting Him with the big things than the little things. But He has given me a peace that gets me through all of it, big and little.
I think that’s enough to get the point across. It’s been a crazy year, a year gone sideways as Joan Didion would say. But it’s actually been a good year with God present and friends loving on me in ways I would never have experienced before.