Week 16. Chemo Recovery SHOOT

The Real Thing – Chemo Recovery.  Shot week 12

Photographer:  Paige Stoyer

These photos show my real world most days during chemotherapy.  The recovery period lasted most of the two-week cycle until the next treatment.  I want to be active, go to work, have my life back.  However, the flood of drugs in my body and brain say otherwise.  I do what I can and what I need to do.  I lay on my couch, tell my cat she’s cute, eat so I can take more pills.  Pills, pills, pills.  Every few hours,  I eat so I can take more pills. Anti-nausea pills, herbal pills, pills for pain, pills to sleep…  I turn all the lights on so my house is bright even when I am not.  I avoid the stacks of paperwork on my kitchen table: bills, applications, copies of blood work and appointments.  I worry about the papers and bills I’m avoiding, but can’t wrap my chemo brain around them. I sit up and turn on my laptop to connect to friends on Facebook or think about the next photo shoot.  On the days when I am not too dizzy or nauseated I go outside, ride my bike around the neighborhood, feel the air on my face.  I think about how the context for exercise, as well as most other things in my life, has changed.  How little accomplishments mean something now.  I try not to measure this time by the same standards I had a few months ago.

Chemo Recovery
Chemo Recovery

 

4 thoughts on “Week 16. Chemo Recovery SHOOT”

  1. I love this series. It’s so slice-of-life, intimate. It’s an interesting thought to invite strangers into your home and your routine like this, yet you still have your privacy! Really lovely.

    I noticed your medication notebook – good for you!

    1. Hello Michelle! Thank you. Yes, this is what much of my chemo time looked like. In my home during small things or resting with my cat. I’ll write about how strange it was to have life kind of stop, at least my daily routines of work and meeting with friends. Suddenly my normal revolved around just recovering so I could do the next shoot and then the next chemo treatment. Not terrible but not normal. I was so pleased to meet you last week. I can’t believe our surgery is on the same day at the same hospital! Also amazing that we met back in my music days and you actually remembered the concert. I had dinner with your housemate and my neighbors after the workshop last week. Such a small world.

  2. Hi. Thanks for all of your inspiration. You are amazing, gorgeous and brave I am just about to embark upon the same journey as you. I am 46 years old with a husband and two young daughters. I diagnosed my own breast cancer about 3weeks ago and since then, my life has changed forever. I am full of so many emotions and turmoil within myself. I live in Vancouver and I am a teacher. I have had to take a leave of absense because of so many appointments. I have ductal and lobular bilateral breast cancer. I have more than an 8 cm tumor in my right breast. It spread to my lymphnodes. I am stage 3. My first chemo treatment is this Thursday for 6 hours. My hair was as long as yours and I just got it cut super short. I am scared but try and maintain for my girls. I will have 4 to 6 months of chemo, bilateral surgery, radiation and a year of tomoxifin. Mine is estrogen based. I hope I can be even half as strong as you. I am so up for any tips you can give me. I am seeing a natural MD as well and am on tons of supplements. What do you mean by chemo brain? Why couldn’t you eat? What books and magazines helped you? I am supposed to exercise. How did you do that when you are sick? Did you have a shot the day after chemo? I have to have it. I am on the paleo diet. I am a grain person and now I have to eat like the caveman did. Not so bad, just hungry. I am so glad my dad, who lives in West Linn, shared your article in The Oregonian. Blessings to you! Krista

    1. Krista,
      I’m recovering from bilateral surgery right now at the small country farm of my older sister. We both cried when we read your message. It seems like yesterday I was where you are. Which hopefully means that very soon you will be where I am. While I am certainly no expert and can only speak to my experience I will try to answer your questions. I so feel for you. 3 weeks after my diagnosis I was trying to take it all in, learn everything and keep my mind from racing ahead to an immediate future I couldn’t comprehend. I am still doing that I guess, I’ve just had a bit more time to realize I can’t know all the answers or the details and have found some comfort in that. Here are the questions you asked and my replies. I’ll put your questions and statements in quotes and then mine will follow.

      “I have had to take a leave of absence because of so many appointments.” Great idea, you’re lucky to be able to do that. I am self employed and worked when I could but my mind was not quite there during those first weeks and then even less so during chemo. The first weeks of testing and appointments were madness for me. Once I started chemo that ended and then started again after chemo before surgery.

      “I have ductal and lobular bilateral breast cancer. I have more than an 8 cm tumor in my right breast. It spread to my lymphnodes. I am stage 3. My first chemo treatment is this Thursday for 6 hours.” I had Invasive ductal carcinoma, originally a 4 cm tumor in my right breast and also in my lymph nodes. After chemo the tumor was only 1.8 cm and they found cancer in 2 or 8 lymph nodes removed. They also found Ductal carcinoma in situ which is a non-invasive once they did the pathology after the surgery. I don’t know what this means yet. (FYI- my cousin had an 8 cm tumor at the time of her surgery and is fine now 7 years later. We are all different. Don’t let the size of your tumor freak you out. Surgery will remove it regardless of size. Chemo will help shrink it before that.) My first chemo was also 6 or 8 hours too. The first treatment was the hardest because I was so scared. I didn’t know what to expect or if it would hurt. It was emotionally very scary. I waited until the day prior to have my port placement surgery so I was sore from that and loopy from the pain meds. I remember crying some and wearing the bright pink ribbon from a blanket in my hair. I look completely stoned and silly in that iphone photo but it reminds me that it wasn’t so bad. I was at Providence Portland and the nurses were SO nice. To my surprise, what I thought would be a dreary and depressing place turned out to be a warm and comforting place. The room was full of windows and the room was bright and the patients all sat together and could talk if they wanted. Most of us had someone with us. The people I sat next to were always welcoming and it was so easy to talk with them about what we were both going through. I found a great deal of comfort in that. I wasn’t the only one and we were all there just doing what we needed to do so best to just find a little joy in it. Chemo itself didn’t hurt (ask for a numbing gel to apply to your port areas an hour before you come in if it hurts when they apply the IV. That part hurt until I got the gel and they used the freezing spray) You can watch movies, read magazines, talk or take a nap. I didn’t feel badly until the last bag of chemo cocktail. Most of the times my chemo day was pretty good although the steroids kept me wired the first few days. I hated those but they kept the other side effects at bay for a few days.

      “My hair was as long as yours and I just got it cut super short. I am scared but try and maintain for my girls.” Feel whatever you feel. It will be scary for your kids regardless. People may say you have to put on a brave face for them. I don’t know. If it helps you to get through it by being brave in front of them then that’s great. You don’t need to be that way all the time however. Cancer is scary and I know it’s been difficult for my step sons even though they are much older. I cut my hair short for the first two weeks of treatment then shaved it right before week 2 when it was falling out by the handful. Tamara Dayton at http://www.oranjstudio.com/ shaved mine off in stages and let me see it as we got it shorter and shorter until I was finally bald. We even tried a little mohawk and laughed a lot. This really helped me. Go see her if you can. Although losing my hair was a little shocking at first it really was not life altering. I still felt pretty, I knew it would grow back (it started growing before my final chemo treatment) and I quickly adjusted to the idea of starting over with brand new hair. The other chemo side effects were rough and I didn’t much care about my hair many days. It was summer and hot and I didn’t want to even wear a wig. I still don’t most days. A cute hat is about it for me. I’m about a six weeks past chemo now and my hair is already about 1/4 long and growing fast. I want to wear it short and be platinum blond for a while. I’m not the same, my hair doesn’t need to be either.

      “I will have 4 to 6 months of chemo, bilateral surgery, radiation and a year of tomoxifin. Mine is estrogen based.” Similar to my treatment path except I think I’m on Tamoxifen for 5 years. I’m at the final surgery stage now and starting reconstruction which is it’s own interesting process. Take each step one at a time and celebrate each marker if you can. It’s too much for me to try to comprehend and plan all of it.

      “I hope I can be even half as strong as you. I am so up for any tips you can give me.” I’m not strong. I cry, feel sorry for myself and worry at times. I just try to get up and take the next step once I’ve done that. What else do we do?

      “I am seeing a natural MD as well and am on tons of supplements.” Me too. I don’t know if they help but I take took them until my final round of chemo when I was just too damn sick and tired of pills and my ND told me to take a month off. Now I’m taking them again. Eat well, avoid sugar. Ignore the crazy diets people will send you and figure out what works for you.”
      “What do you mean by chemo brain?” I think you have to experience this to know who it will effect you, if at all. It’s hard to explain. I was ‘foggy’ much of the time. I couldn’t remember things, couldn’t process quickly or multitask. I got overwhelmed easily. My friend, Ken Arnold, has written more eloquently on this than I have. He has a series called “chemo brain” on his blog. http://www.kenarnoldwriter.com/

      “Why couldn’t you eat?” I could and was hungry even when I had nausea which was most of the time. Eating seemed to help that for me. The only time I couldn’t eat was when I developed mouth sores and it was too painful. They were like bad canker sores. They will tell you how to make mouthwash if you get them. If they get really bad they can test them and see if you need a prescription. I did and they cleared up.”

      “What books and magazines helped you?” I stayed off of the internet and away from magazines and books unless my Dr recommended something or someone who knew me very well read it first and brought it to me. My approach from the beginning was that I would control my mind and my experience of my cancer as much as possible. I would not be a statistic and it was my body. Cancer was in me but was not me. Instead of accepting the stories of or contact from everyone out there who had cancer, even breast cancer, I decided I would only contact other people who had my type of cancer, were around my age (premenopausal as that puts us in our own category,) and who had extraordinary outcomes. This wasn’t until after I was already in chemo by the way. Even then I would only talk with them about the next step of my process, not every single thing they had been through. I could not take in all of it even though there really is an amazing resource of women who are willing to share with us. In the beginning I couldn’t take in any of it. This was simply my way of doing it without getting overwhelmed. There are many other ways. Instead, I took that uncertainty and fear and wrote or did photo projects. Anything to make life feel normal when it otherwise felt so out of control.

      “I am supposed to exercise. How did you do that when you are sick?” Do it when you can. It does help. I had a truly terrible experience with an oncologist when I was getting second and third opinions in the beginning. The guy had horrible interpersonal skills and talked about “cutting off my breasts and plucking out my ovaries.” No kidding, he used those words. He said lots of other things that made me very fearful. He did, however, say something that stuck with me and was very useful. He said that he makes his patients exercise everyday and that the ones who did had much better outcomes than those who did not. While I did not get out every single day I did go to the gym and ride my green bike on the days that I could because I remembered his words. My other Drs said nothing about this but I’m so glad I did it. You will have days you feel okay. You might have many of those days. Do what you can when you can and let that be okay. FYI- when I went to the gym and wore my little hat or when for a ride and wore a bicycle helmet no one knew I had cancer. I looked like a normal athlete. I loved that feeling even if I was not able to do as much as I had before. Do something.

      “Did you have a shot the day after chemo? I have to have it.” Yes, mine was Nulasta. It is necessary to boost you blood count so you can recover enough to receive your next round of chemo. It’s easy to get and doesn’t take long. It did, however, make me very achy and in the last four rounds of chemo caused me real pain. You may have a different type of shot and your response may be different remember.

      “I am on the paleo diet. I am a grain person and now I have to eat like the caveman did.” I was vegan before chemo then started eating meat because I needed the protein to heal and wasn’t getting enough no matter how much I ate. It’s probably possible but I got sick of endless smoothies of green stuff that all tasted the same eventually. Easier to eat meat again. Do whatever it takes. You can always change it later.

      I hope that helps. Again, that’s simply my experience and yours may be completely different. Don’t put too much stock into my words, make up your own and your own experience. Use what you can if it’s helpful. It’s okay to be scared, of course you are. Kimberli

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