Chemo Bag

I started packing my hospital bag today. They gave me a brochure about cancer culture, and the bag is called a “chemo bag”, and it gave me a list of suggested items to include. It was really helpful, giving me rules of the hospital and telling me what will or will not taste good after surgery or during chemo and what kind of comfort items might be a good idea.

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In my bag, I included a granola bar and new fox pajamas from my Nathan’s mom, pictures of Nathan and the kids, my journal, some colored pencils, and basic toiletries – including extra rubber bands in case we can get my hair braided and out of the way. At the last minute, I will add my ipad for reading and listening and games and writing, and throw in the charger for my cochlear implant batteries. I also threw in coloring books and crayons for when the kids visit, and a little hot wheel car for each of them. From the list the hospital gave me, Nathan is going to get me some post it notes that people can write notes on for me, and some post it picture hangers to put pictures up on my wall.

It’s a fine line, though. I like making the whole thing less scary and less painful by making it more comfortable. I don’t like the idea of making the hospital home, because it is not my home and cancer does not belong.

Yesterday was a hard day. In the morning, I could not even stand up. Nathan had to walk me to the bathroom for the first time. We got me to my reading chair, and several hours later I was finally able to stand enough to shower. Then I had to take another nap to be able to get dressed for church, and only made it through sacrament itself, not even the whole first hour. Nathan and the kids brought me back home. It was a bad pain day, but not being able to stand or walk was scary. We don’t know if the larger of the four tumors is pressing on my spine, or if cancer is spread there. That is part of what we hope to find out in surgery.

I slept all the rest of the day. Five woke me up after church for a picnic lunch with him and Nathan in my room. Nathan was so sweet to make little picnic foods for our lunch, so that it just seemed normal and fun to five, rather than mama-is-having-a-bad-cancer-day. I heard, though, that it was his turn to say the prayer in primary, and that he prayed for angels to help me at the hospital and whisper to the doctors what to do. I love that boy!

I slept after lunch until 530 last night, when we woke from the heat. We think maybe our air conditioner is going out? It cooled back down last night, though, so we are not sure. I do know, though, that the only thing more fun that a hysterectomy with medically induced hot flashes is experiencing that with no air conditioner. Oh, the adventures! Nathan sent me this today:

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He makes me laugh! Nathan’s parents came over for his dad’s birthday dinner. We had ribs and corn and mashed potatoes and a melon salad, and it was good to just have a normal night. Five got BBQ sauce and corn juice all over everything, and the toddler ate until she tantrumed herself into bed. I was never so happy for some normal, even when normal is too loud and too fussy. We ended up having dad’s cake after the kids went to bed, so we whisper-sang his birthday song to him, and it was very funny. We enjoyed the visit, and Nathan was such a help to make dinner and do the dishes for us.

These bits of normal have helped. Hugs help. Smiles help. I so appreciate the texts and emails and cards and notes from so many who are praying and finding ways to help. We are so very, very grateful. Here is a funny message I got from my friend Steve Kapp Perry, who sent me pictures of the sacred grove, a place I have yet to have opportunity to visit:

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He is very funny, and I am so grateful for his encouragement. Laughing helps. A lot. Because nothing makes this all more real than packing your first chemo bag.

I had my two weeks of normal, just like the doctor told me to do. I spent time with Nathan, I played with the kids, I got my work as taken care of as I could, we took a family trip to the temple, and I visited my church leaders and my “parents” and spent time with Nathan’s parents. I have made as many arrangements for my children as I can ahead of time, my insurance papers are in order, and my house is reclaimed from the last six months of fostering. I am making new friends from our new ward, almost, and am so appreciative of their support and help. This week life has been good and normal and fun, despite the pain and cranky body. I have done all I can do to be ready, and to distract myself as time passes until we can start this battle.

Oh, except answer this hilarious food questionnaire that I was sent and asked to post in the blog, about what my favorite foods are from Bartlesville restaurants. Too funny… I know they said not to lose weight because cancer would win, but you guys don’t have to make me larger!

Chili’s – salmon with rice and broccoli
Garfield’s – fried chicken salad
Hideaway – gluten free pizza with double garlic, cheddar cheese, mushrooms, olives, ham
Dink’s – pulled pork and curly fries
Braum’s – fried chicken salad with strawberries and blueberries
Sonic – ice water

The other places I either didn’t know or we don’t really go there very much. As for the questions about the kids, they like any playground (sooner park, sonic, mcdonalds), the kiddie park, swimming, the splash pad, the library, and the dollar movies. Same as most kids, I guess. Five cannot drink cows milk, but other dairy is fine, but gets hives if he eats wheat, so just pull the bread or buns off or use corn tortillas. It doesn’t have to be complicated. No food allergies for the toddler.

Today I go do lab work and give them my blood for more testing. Tomorrow is my pre-op, with more scans and paperwork and going to the hospital. I type while I wait. So far we do not have to do an MRI, which is a blessing because we don’t want to take my cochlear implants out. Surgery will be at the very end of this week, and we will post updates as we are able or as soon as we know anything. My fevers come and go, the lymph nodes I can feel are huge knots, and I sleep a lot and so am not very exciting.

Today is a better day than yesterday was, with pain more under control and my body cooperating more than it did this weekend. I even was able to cook breakfast for Nathan. Who knew it could be so empowering just to pour orange juice for someone?

It’s the normal things that mean so much, and the people moments that count.

That’s where love is, and that’s where life is.

And that’s what matters.

Posted in Health Tagged permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.

Comments

Chemo Bag — 2 Comments

  1. You are in my prayers, Emily for your strength to go thru this ordeal. Also for your family. You are loved by your family and friends and by us too. By reading your posts, I feel like I’m there with you in spirit and prayed often for you all
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