Know Yourself

In the summer of 2016 I kept getting an image in my head I felt compelled to make. I did not know what it meant, but it kept coming to me. I was visualizing my torso with large trees growing out of it. I could not shake it, so I decided to make a piece about it. The piece above is the result. I printed my torso on metal flashing and then floated above it a photo of trees growing. The view of the trees is from a hammock I grew up laying in. I have watched those trees grow my whole life. A couple months later I found out what was growing in me. I found breast cancer. Less than a year later I found out my breasts, and my whole abdomen was filled with enlarged and asymmetrical lymph nodes. I had lymphoma. Whoa! How did that get in my head so far before I had an inkling anything was wrong. I have no explanation, but I respect the shit out of it.

Part of getting through this is sensing the pattern of my treatment. I need to understand what I can do when and be ready to be fluid and adapt my plans as needed. I am now hopefully halfway through my chemo. I have recognized some things that help me. I have some tips to share.

I get three days of chemotherapy followed by 19 days of recovery. This continues for 6 cycles. After this, if I am in remission, I will get stem cell transplant. When I get my chemo, day one is a Tuesday and when the bulk of drugs are given to me. Everyone reacts differently, but this is my pattern. I usually feel pretty good going in, but by the time it is done I am feeling pretty crappy. I need help getting home. I am weak, disoriented, and very spaced out. One of the drugs I get on chemo days is a high dose of steroids. So I may be exhausted and hyper at the same time. On day 1 chemo, I will get nothing done. I feel a little better by the end of the day.  Day 2 and 3 are much better, but I am still pretty wiped out. I have found out I need help getting to and from chemo those days too. On Friday I wake up feeling pretty good. Then I have to get a shot to increase my white blood cells. This wipes me out completely. Time for Netflix. Anyone have good recomendations?

Chemo has some substantial side effects and impacts. They are cumulative as treatments continue. My white blood cells drop making me vulnerable to infections, my platelets drop making bleeding a problem. I develop spontaneous bruises. Sores can develop in my mouth. I can wake up covered in sweat as I process drugs and lymphoma out of my system. My digestive tract goes nuts. Food tastes too spicy. I am getting peripheral neuropathy. This means my hands and now also my feet are numb and tingly. My fine motor sucks. I have to wear flip flops inside because if I start to step on something I may not feel it. This nerve damage may be permanent, or if it is reversible it could take a very long time. I have “chemo brain”. This means ADD. I walk across my apartment and have no idea why.

Ok so all that sounds not too great, but I have figured out some things that help:

• I use an app on my phone called AnyList. I have a list for everything! What I need at the grocery store, questions for my doc….. The second I think of something I put it on one of my lists.
• I have another app called BillMinder. All my bills are listed in it, and it sends me notifications when they are due. I really do not need my lights turned off right now.
• I set alarms on my phone
• I load up my fridge before chemo with simple, easy to prepare foods. Luckily I am in Chicago and have Trader Joes. They have a terrific freezer dept full of tasty prepared stuff.
• Get lots of hand sanitizer. Keep some on you.
• My mouth gets dry. Biotene makes good rinses, sprays, and mints.
• I love OdoBan. You can get it at Home Depot. It cleans, sanitizes and smells good. I get it by the gallon as a concentrate. You can put some in a spray bottle and spray everything, even upholstery or in your car. Spray and leave 10 min before cleaning. You can put some in your laundry, mop water….
• My skin has become very sensitive. Normal fabrics feel scratchy. Sometimes I am cold. So some soft hats or scarves are nice. The American Cancer Society gave me a free wig, but I never wear it. It is uncomfortable on my scalp. I knit hats and bought a little variety of different styles. I am not very good at the whole scarf turban thing. There is a great product some sisters who had cancer developed. They are like a scarf, but you do not have to tie them. They are soft and have elastic in the back hidden. So no need to figure out some elaborate way to tie them and they are never too tight. Nice to have something simple to throw on.  They are called chemobeanies:  http://chemobeanies.com/
• My feet get cold and its good to have something easy to slip on and off for chemo. I have a separate pair of flip flops I only wear at home. They never see the street. Also, these slippers look great. I am going to knit a few pairs. I can throw them in the wash and easily tuck a pair in a bag.  Ihttps://youtu.be/eUI1x-RuOM4
• I am not a big water drinker. It’s extremely important that I drink a ton now. I have found making some infused waters and keeping in the fridge makes drinking water much easier. Its fun and you can vary the flavors from day to day. There are a ton of ideas for this on pinterest:  https://www.pinterest.com/pin/AQhlxrry8k4GvssyKpswleY-ngzk4CZLYs9gd6SL4pBU8N5xBGuVQMs/
• Remember soft easy to get on and off clothes that don’t bind. Yes, I bought very hot granny panties! Lol. There are some sheets at Target in their organic line which are very comfortable.

I know once chemo starts I will not get much done that week. Being prepared to be low key is good. I also know the week after chemo I may feel some side effects of chemo more strongly. I may need to stay home and go on sanitizing overdrive if my white blood cell count drops too low. The next week I should feel pretty good. This is my week to do errands, get organized, get out a little more. Get some boredom crushers ready for those low key weeks. Maybe there is something you are interested in that you will have some time for now? I am taking an online class about wine. It’s ridiculous because I can not drink but I love all the history and as an ex-pastry chef I dig the fermentation chemistry.

I hope these tips can assist someone going through treatment.