The Cancer Registry
Hi Team!
I've said it many times before, but cancer is like Christmas. I received so many amazing gifts, blankets and tokens the last time around that brought smiles, comfort, fun, and made my face light up. I felt terrible, though, when you can only have so many super soft blankets, hats and coloring items to use for one lifetime or illness. I cannot tell you how much we appreciate the thought, though, and we've discovered through trial and error that there are some tangible things that make going through this easier in massive ways. Some of those things are things, some are monetary, but above all the thoughts and prayers do all the work.
I hope this can be a good list for anyone to turn to for another person in their life with cancer as well : ) I'll have items on here that I will mark as having been gifted because I think they are that helpful and we've already got them in place and on board. Just ideas but can be a good starting point.
Our priorities and needs will be changing, but rest assured I am better able to reach out and ask for help and things this time compared to last time.
We love you all so, so much.
Your emotional support of us means everything and makes going through this possible--rest assured, Trevor is able to make me laugh and smile everyday.
We love the new apartment we are in close to the hospital. We wanted to be sure that it is as safe as possible so we had the ducts and vents cleaned before I got home from the most recent hospital stay. If this is one of those things that would resonate with you, this is just a fund to contribute to : )
I was able to have a treadmill in my room at the University of Minnesota during transplant and it saved my sanity, helped with and kept me moving. This fold-up treadmill should fit in my room both now, during BMT and at home for the 100 days post when spending much time outside is discouraged even with a mask.
www.amazon.com/gp/product/B017SS2A3G/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1
We have used Rover.com in the past and love it! We get to meet the sitter with the pups ahead of time and it can be cheaper than boarding. It wonderful that the pups can keep Trevor company while I am in the hospital, and if we got in a pinch it would be great to be able to call them to help :)
There is an arcade bar here in Durham that Trevor can go to with friends after work that he loves : )
When you have a Hickman catheter or a port placed for chemotherapy and other infusions, it is critical to keep that dressing dry to avoid infection. It gets changed weekly, but that is uncomfortable enough 1x/week let along if you happen to get it wet. Hand-held attachment makes all the difference and the longer hose could let you sit if too fatigued.
As a blowing fan is a no-go with dust etc and I am addicted to sleeping with a fan, this has been amazing! It also helps block ambient noises from outside the room which is incredible. Anyone staying in the hospital for awhile or needs good, quiet rest for healing and likes white noise could really use this puppy.
When you have very few platelets in your blood for clotting, use of a razor to shave your legs is a big no,no. Of course, I have other concerns besides having smooth legs, but a little self-care never hurts.
I usually stay hooked up to my IV under my shirt so I can change when I want to having to call a nurse to unhook me, but some of the infusions can be pretty cold on the skin to sleep with, so a half zip makes for easy IV access at 2 in the morning : ) I also wear these to cover up from the sun since that can trigger a GVHD response post BMT.
www.rei.com/product/101771/rei-co-op-lightweight-base-layer-half-zip-top-womens
I usually stay hooked up to my IV under my shirt so I can change when I want to having to call a nurse to unhook me, but some of the infusions can be pretty cold on the skin to sleep with, so a half zip makes for easy IV access at 2 in the morning : ) I also wear these to cover up from the sun since that can trigger a GVHD response post BMT.
www.rei.com/product/101771/rei-co-op-lightweight-base-layer-half-zip-top-womens
Few things make me happier than finding new, good music to listen to when I need it : )
We have amazon prime, but there are some videos that would fun to rent to stream for a little classic musical pick-me-up or something we won't be able to go see in a theater with a crowd :)
i am not drinking caffeine, but we can get travelers of coffee from the Starbucks in the hospital for my nurses who work so hard! A very good excuse to run an errand :)
Found this book 2 years ago through one of the book's essayists, Suleika Jaouad, who was diagnosed with AML in her early 20's and underwent a BMT that she wrote about in the New York Times. Maybe it isn't the first thing to give to a woman facing chemo but at some point it is a clever look at lots of women and their relationship to their hair.
In the last month alone, I would estimate that I have had over 12 different platelet infusions - in fact, I had to get three different donations in one night to prep for my new line placement last week for it to even be feasible. There are usually chronic shortages of platelets, and platelets in particular keep me alive/keep me from having retinal hemorrhages like I did 3 years ago that lead to my diagnosis.
It would make my heart so happy to know that some of these life-saving supplies were being added to what is available to children and adults with blood cancers, versus being consistently subtracted by me. I am going to be needing a lot of these - all of us with blood cancers do. If you are not eligible for marrow donation due to age, this is one of the biggest ways to help me and all of us.
https://placidnoise.wordpress.com/be-the-match/
I am beyond lucky to have already received one complete match bone marrow transplant from Be The Match registry.
***Plus, I already have another complete match donor lined up for whenever we are able to get me into remission and set for transplant. That's right! He is already signed on, consented and just waiting for the go signal from us! It is incredible.
However, there are many others who do not have the number of donor options I did/do. Unlike me, they are ready for transplant but anxiously awaiting their match donor. That's where signing up could save someone else's life.
Receiving a beautiful blood donation as I write this here in clinic. Since I am not able to make my own blood products for the time being, as soon as my hemoglobin get below 8.0 (normal for females is 12.0-14.0), it is time for more blood. Since I had chemo at the beginning of September, I believe I have already needed 5 'bags' of blood.
Where the Wild Things Are T-shirt -
Half-zips are great for Hickman catheters but for a PICC line, having a T-shirt is the easiest : )
Medium Tri-blend T-shirt
Medium T-shirt
Where the Wild Things Are