Sunday, June 05, 2011

I cried today. In public.

And not for the reason you might think. Well fine, yes, it was related to cancer and chemo but ultimately it was someone's reaction that made me cry.

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I am now finishing up my second post-chemo day and I will tell you the hardest thing I have encountered so far is my own psyche. There is something incredibly unnerving about waiting for bad stuff to happen to you. I've read and re-read about all the possible side effects of chemotherapy and what to watch for and what to monitor and what are red-flag-call-the-doctor symptoms. So I feel like I am trapped in my head checking on each and every twinge questioning what might be happening.

Yesterday I woke up feeling fine - normal, even. I had an appointment at the hospital with the doctor on call to get an injection at 10 am and I decided I had plenty of time before that for a run. I put on my favorite pink tank top and black shorts, picked some good music and strapped my iphone to my arm and my knee brace to my knee and ran out the door. I didn't run hard or fast and by the time I was at my usual path on the river my chest was already tight. My spring allergies hit late this year so I couldn't be sure if this was pollen-induced asthma or chemo-related shortness of breath. So I took a couple of puffs from my inhaler I stuck in my shorts at the last minute (the inhaler I often forget, neglect or just purposefully leave behind) and I kept going. I didn't run far and I didn't run fast but I felt like I was doing something amazing by running the day after my first chemo treatment, even if it was only 1.3 miles. I walked up the long hill to the hospital, stopping at Duane Reade to buy a Gatorade first. In the now familiar hospital lobby I handed the pager number of the on-call oncologist over to the security guard as directed and waited. I finished my Gatorade and put on the light long-sleeve shirt I had tied to my waist and wondered why there were birds flitting around inside.

The oncologist appeared and introduced herself to me and greeted another patient of hers waiting with me. She apologized for the wait and asked us to follow her back up to the 11th floor infusion room, which was empty on a Saturday. We each took a seat while she went off to collect our injections and the man in the next chair made small talk with me which primarily consisted of him telling me I shouldn't be running. I told him my doctor okayed it as long as I didn't over do it but he figured his mistakes should be a warning to me and told me about how he was off loading boats or something or other after his first treatment and ended up in the hospital for four days. I thanked him for the advice and tried to steer the conversation in another direction but was saved by the doctor who returned with my injection first.

Just like the fertility injections, this shot was stuck in my belly. Quick and painless. I told the doctor I had read/heard that the side-effects can come on stronger after the injection and she confirmed but also indicated, once again, it is a different experience for everyone.

So I went home and did a little more light exercise/stretching at my gym before showering and waiting for the dreaded side effects.

I drank lots of water and questioned whether I was hungry or queasy or nauseous or bored. I believe I was mostly bored. And scared. I wanted to sleep and I wanted to do something and nothing all at once. I felt restless and listless at the same time. I wanted someone to call or come over except I didn't want to see or talk to anyone.

By mid-afternoon I realized what sounded best of all was some lo-mein noodles with steamed vegetables so I ordered them. I didn't eat very much but at least I was eating. Although I was afraid to eat because I was (am) afraid to throw up. I refrained from my usual spicy noodles and got the plain ones.

By the end of the day I was exhausted from the sheer focus of paying attention to my body. My legs ached (they seem to do that at the end of the day now for no reason) and the glands in my neck feel tender and possibly swollen and I think I might always have a headache on a permanent basis but nothing unmanageable. No fever - I checked incessantly throughout the day since that is the biggest red flag. 

I went to bed at 10:30 pm and I didn't get up until 11 am. And I was still tired.

That isn't like me. So I worried and waited for the dreaded second day after chemo parade of horribles to unfold.

I didn't want to get sucked into TV so I sat on my favorite orange egg chair with my feet propped on a blue stool and read. I played my Sunday morning classical playlist and drank glass after glass of water. First I continued reading "The Emperor of All Maladies" until my brain could no longer focus. Around noon I decided I had to shower and get dressed whether I left the house or not. Afterwards I even convinced myself to eat some more noodles. I returned to my chair and picked up a lighter book - "Beauty Pearls for Chemo Girls" by Marybeth Maida and Debbie Kiederer. It was great, to a point. The book is basically all about how to combat some of the uglier side effects of chemo. There are great tips and messages but after a while I felt like I was waiting for my skin to turn brittle, dry and sallow, for my hair, eye lashes and eye brows to fall off and my eyes may even turn yellow! To combat all of this I would need to throw out every beauty product I own and start from scratch and from here on out the only fabric I should allow to touch my skin should be cotton.

Time to put away the books and step out the front door. I feel fine.

One of the tips for managing pain and stress and fatigue in that book and on many websites and other books I have read and even from my own oncologist is massage. I was gifted some massage gift certificates to a fancy salon I have never been to which is closer to my office than my house. I considered calling there but it seemed like more effort and less likely they would have an immediate opening. Instead I called a spa I have been going to for years. A small, new agey type place I have loved. Just as I had hoped, they had an opening for 5:30 pm.

I put makeup on and left the house early so I could go for a walk in the unseasonably cool afternoon air. A block or two from my place my sister called so I walked and talked to her for a while and then sat in Central Park for a bit waiting for my appointment. It felt good to be outside but the crowds of tourists and other oblivious pedestrians outside made me feel fragile. Waiting for chemo side effects was reeking more havoc on my psyche than actually feeling sick.

Once I was buzzed into the spa and was walking up the steps to reception, I felt tension sliding away. The familiar but unidentifiable to me scent of the spa put me more at ease and made me grateful to be off the chaotic streets of Manhattan. I was disappointed to not be offered the berry tea I have grown to love but happy to be quickly whisked up to the massage room before I even had a chance to sit down.

As we walked in the room she asked if I had any health issues she should be aware of. I already had this part planned out in my head. After all, I told my stylist when she cut my hair off, I told the girl at the nail salon so I could buy my own manicure set, massage is touted as a complimentary treatment to chemotherapy so it would likewise be no big deal to tell this woman.

I was wrong.

As soon as I told her I was undergoing chemotherapy she told me she could not help me. I told her I have spoken with my oncologist about massage and she said it is fine - encouraged, even! This woman spoke to me like I was a child (although I am sure she is younger than I am) and explained that when she massages, she is moving the cells around and if she massages me while I'm getting chemotherapy, she would spread my cancer. I tried to dissuade her of this incredible notion by explaining to her that I am comfortable with the fact that my doctor and all my research has indicated massage is safe and encouraged but if she is not comfortable with it that is fine. Again, she went into her ridiculous speech about spreading my cancer.

We walked back into the hall and at the stairway I burst into tears. I tried to shoo her away as I explained how incredibly stressful this whole experience has been and that all I wanted was a way to relax. Then she told me "do not feel this way" and I was done. I told her I needed to be alone to compose myself and I walked back into the massage room and took large, deep breaths. I pulled my sunglasses out and tried to piece myself together enough to get out of there.

I expected her to still be waiting in the hall but she was gone. I walked down one flight of stairs to the reception area and she had pulled the guy from the front desk into the back hall where they were clearly discussing the whole ordeal. I waved goodbye and incredibly, I think I even said thank you.

I raced down the last flight of stairs to the street and called my sister in complete meltdown mode. I was devastated.

When the results of my breast biopsy came back positive and a doctor told me over the phone "It's cancer." I did not cry.

When I had to call my mother, my father, my siblings and friends I love like family and repeat over and over "I have breast cancer." I did not cry.

When I walked into the office of my mentor to tell her "I have cancer." I did not cry.

When the oncologist told me about that damn spot on my sternum - I did not cry.

Throughout this entire journey from diagnosis to the start of treatment I have felt incredibly lucky to be surrounded by supportive family and friends and work colleagues. People who understand and if they don't, they fake understanding. In almost all of the personal cancer stories I have been devouring these last few weeks I have been shocked by how many people have to wade through rude doctors, nurses, receptionists, obnoxious friends, etc. I have had none of that.

Until today.

I vented with my sister and walked to the river where I found an empty bench to sit on and watch the sun set over the water. I breathed in the cool air and we laughed at this woman's ignorance - and the fact that she missed out on my business. We even quoted the whole "big mistake - HUGE mistake!" line from Pretty Woman. Venting to my sister put my soul to rest and looking at the water smoothed over the other rough edges.

I hung up feeling better and finished the healing with Mumford & Sons playing in my ears as I flipped through a magazine.

I decided, for me, no more solitary weekends. I may not be debilitated by sickness at the moment but from here on out, I need people around me to save me from what is happening inside my head.

5 comments:

Emily said...

Oh, Alyssa, I'm so sorry! What a jerk that spa lady was. UGH. (And my first thought, no kidding, was "Big mistake. Big. Huge!") Sending hugs your way!

Hannah said...

That massage therapist is clearly a bit stupid. I had never heard of any risk with having massage. A quick google says that on chemo there's increased risk of anaemia, infection and bruising so special precautions are needed but if the masseuse has been trained in cancer massage it can be very beneficial (I'm sure you found this yourself). Clearly she wasn't trained in that area (and is a bit dim if she thinks massage can spread cancer!). Also don't listen to other people about what you should an shouldn't do (except the professionals of course) as whats right for them might not be right for you. Fatigue is a very common side effect and actually exercise is often found to be a better way of dealing with it (so long as you don't push yourself too hard) than resting all the time. I find your entries very interesting as I am the radiation therapist who commented on a previous post. It is good to see a patient perspective on the other parts of treatment that I am not specialised in. Thank you for sharing your experiences. Rooting for you to beat this thing, I have confidence you will!

Kelly S. said...

I loved this post. My mind is definitely my worst enemy. With my husband gone (deployed in middle east), I am constantly playing out worse case senarios. What if he dies. What if the kids get sick. What if I get sick. Blah blah blah. Distractions are a must. Second, I am constantly amazed at the level of stupidity that some people are able to reach. Things that you would think are common knowledge like oh say how you can't spread cancer by rubbing the skin above it are just above and beyond the effing idiots of the world. I would have told her she was incredibly stupid and left. Maybe even flipped her off. Third, I have found that crying when you don't expect it is the most cathartic. I had my good cry in the bread aisle of walmart while shopping for whole wheat english muffins. I look forward to every post and I'm so glad that all you are facing right now is Stage II. Yay stage II!!! Stay strong!!

Anonymous said...

did chemo finally catch up with you? Hope you are well...

Kari said...

I've been reading your posts for a little while but have been too "shy" to comment. This post has brought me out of my shell.

I'm sorry that you have to deal with ignorant people sometimes.

My brother is a cancer survivor (I love the power in the word "survivor".) During his chemo and radiation he worked as often as he could in order to maintain a sense of normalcy. Running may do the same for you.

I don't know you, but still, I think of you often. You have more people pulling for you than you may realize.

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