Love, shoes and family

This week was an attempt to do some normal things. I’ve been on prednisone for a few weeks now to try to treat my GVHD that flaired up in my GI tract and a bit on my skin. So far my reaction to GVHD has been very mild. I could have easily ignored the symptoms and not reported to the doctor but they have drilled into my head to not ignore anything and the smallest sign of infection or grafting reaction has to be treated immediately. It’s so much easier to treat it early rather than try to catch up later. Our stand-in doc while the main doc is on maternity leave explained it at our visit yesterday but I wasn’t really listening. Ask my endlessly supportive husband who could be a hematologist by now. Essentially the graft vs host disease reaction grows exponentially if allowed to proliferate. They don’t want to over-treat because the medications that I have been taking have significant side effects and possible long-term consequences. An attempt to lower my dosages resulted in my current GI outbreak so they are going slow on reducing my Prednisone. It’s a balance. I have been eating really well since starting steroids and I just have a small amount of edema in my feet, ankles, belly and cheeks. Appointments are once a week for check-ups and testing. This week we spent just 6 hours at the hospital with a break for lunch with a friend. I had to do a pulmonary function test first to measure possible lung damage from radiation. Results are still pending.

In celebration of life and family and bourgeois weekend things to do we drove to Easton today to do a little shopping. We are on a limited budget since cancer costs a shitton but the kids wanted to go to the bookstore and I wanted to look at shoes. To be able to do this activity shows extreme progress on my healing from even a few weeks ago. Simply going to a store is an exertion but an important part of my rehab. Some of my mom friends generously contributed to a 100 day present of a $100 gift card to DSW. They also gifted me snacks and spending cards to Target, Starbucks and Chipotle. I splurged this week on make-up and skincare at Target already. We have indefinitely delayed our German bone marrow theme party because of my setbacks and my desire to celebrate when I’ve actually made progress.

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Jeffrey is somehow into taking me shopping so the whole family went to look for shoes. This trip is so close to things we used to do that I wasn’t even annoyed by them joining. They pop along behind me at the store tripping me up and suggesting I try on ugly shoes. They hover and tangle underfoot and then wander off when I finally wave them away with no communication of where they are going. I had no specific idea of shoes I wanted but I started with dress shoes and wandered through casual and sneakers. I’ve had an eye out for a good pair of nude patent leather wedges with a covered heel. I don’t want a wood or cork or espadrilles heel. I have a great pair of nude heels but I’m at an in-between stage right now where I can wear a more stable heel but I’m not quite strong enough for stilettos. The truth is that all I do these days is take the kids for a walk around the neighborhood, go to the hospital and go to the gym. Practicality would say that I pick up a new pair of sneakers with my money since that is what I could use daily. Of course, with me and shoe shopping, I’m not that practical. Jeffrey encouraged me to consider it gift money and buy something I wanted but don’t “need”.

I ended up purchasing the first shoes I tried on. They caught my eye and fit like a dream. They are good quality and comfortable for my current footwear needs while still being somewhat tacky and over-the-top enough to be fun. Introducing the Taryn Rose wedge:

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They are coral AND snakeskin WITH a gold shimmer pattern. Jeff says this comfortable brand is one step closer to geriatric shoes but I’m ignoring his comments.

Amira was a great shoe shopper. She found my size in the rows of boxes and packed shoes up when I was done trying. I forgot how small she is because at the end of our trip Daddy picked her up and her face brightened into surprise when she saw over the racks to the mass square footage of just shoes. She desperately wanted a neon pink purse but we told her to save her allowance.

Epic shoe shoppers
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The gifts keep on giving this week when I got a surprise drop-by with a box of cupcakes from a friend. I accepted them gladly. I know people see us struggling just to try to maintain normal and they desperately want to help in some way but don’t know how. There are large gestures such as the aunts who pay for housekeeping, friends and relatives who flew out to help even though I was barely able to function and communicate appropriately, friends who gave us a place to live. There are amazing meals that people cook with so much food that I freeze for lunches and people who drive me here and there without a word. I will tell you all now that the little things make a difference. A card on my wall, a kind word or note, cookies on my doorstep, a foot massage or visit at the hospital, a lunch out, these things make me feel loved and supported. We are not alone all the time. If you want to support cancer research that is good too but to make a difference for someone you know remember these things. We won’t ask for help because that is so hard to do but I have learned to accept .

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Posted on May 27, 2013, in Uncategorized. Bookmark the permalink. 2 Comments.

  1. Those little things make the biggest difference, don’t they. When I had treatment (after about 6 months of it) many people forgot it was still a struggle – but for those who still dropped off food and cards, I’ll never ever forget them.

    You and your family are looking wonderful. ~Catherine

  2. Recovery continues long after treatment ends and thankfully everyone continues to show us love.

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