I thought I was prepared for my first chemo session. I went to acupuncture, a yoga class and dressed up to feel good in my favourite dress. Lauren downloaded ”This American life’ and ‘Wait Wait don’t tell me’ podcasts to listen to while I was hooked up to the IV. I had read all about the benefits of ginger in counteracting nausea. A former chemo patient at the clinic swore by pickled ginger and brought in some to give to other patients. It was the most disgusting thing I had ever eaten but I believed it would work. I decided to get my mind to believe I would be fine so I planned to do another yoga class a couple of hours after chemo. I had read all about the effects of chemo and done mental summersaults to find the positive, to find the faith that it would work.
I was determined to be that urban legend, the person that chemo doesn’t really affect. I kept my mind off the IV and focused on going to yoga, which I triumphantly did.
I got up went to the mall, hung out with Jen, took 2 yoga classes and went to dinner. I believed I was going to sail through this chemo thing, that was until 4am on Thursday morning.
Chemo is like living through the worst hangover ever, while coming down with the flu all while being held captive by dementors.
By the afternoon all I could do was lay on the couch and attempt to by watch home makeover shows. Suddenly it felt as if all the light in the world went out and all that was left was pain. I started to think about dying. A shorter life started to look more reasonable option than this feeling of complete and utter sadness. It was like a dementor from Harry Potter was hovering above me. Life was cold, empty, meaningless and I could hear my own screams in my head. I thought about saying my goodbyes, and how my friends would be fine with out me and life would just carry on but I wouldn’t be there. I reasoned with myself that I could enjoy the time I had left and never have to go through chemo again. My will to live slipped easily through my fingers, until I thought of my sister. I couldn’t imagine saying goodbye to her. My brain would not let me contemplate my sister living in a world without me. My sister is someone who needs me to be alive. My will snapped back into place. I burst into sobs. I was angry and upset that I was going to have to live.
Every minute was filled with hours of pain and fear.
I was terrified that I had chosen to do this, terrified I was dying, terrified of living, terrified that all I could do was cry.
Lauren was amazing. She took so much care of me, doing dishes, taking out the trash, making sure I was hydrated, holding me through the tears and opening up my pink folder of things to to. She looked through my bills to see what had and had not been paid, read through pages and pages of leave of absence forms, she was ready to deal with the minutia of my life that I, even on a good day, can’t face. She worked with me to discover I needed an additional form to be filled out by my doctor, that I had faxed my forms to the wrong place and that my disability checks weren’t set up and my checks were going to bounce. On one of the worst days of my life, I had to deal with banks, faxes, forms, and setting up my printer.
I was determined to power through my day and get things done. It took all my energy to be driven by Lauren to the doctors, pick up forms, go to banks, copy the forms and put them in an envelope. My brain went into overload and wouldn’t process that I needed to stay home and relax, instead I wanted to feel normal so I went to the yoga studio.
I drove myself to get my hair cut, short. It looked super cute. Jenny Macdonald worked her magic to make my hair still look super feminine. I had read that it is less traumatic to loose your hair when it is shorter. I was queasy in the car but kept thinking if I ignored it I would be ok, so I made an appointment for acupuncture in Culver city and went to lunch. My powering through fiasco lasted until 5pm when my body pouted and gave up. Even though I wanted to take my new cute hair out I could do nothing but lay in bed listening to a new podcast called Radio Lab.
Sunday I dressed myself up, determined yet again to feel accomplished and somewhat normal. I accompanied Bethany on a dress shopping mission. By 4pm I was back on my bed with no energy but we had found a perfect dress for Beth.
I spoke with a nurse from a wellness support through my health insurance. She was super understanding and knowledgeable. She asked me about my blood counts. I had no idea about them, she asked when my appointment was to get them tested and I had no idea. I called my oncologists office to find out and was berated for leaving it to the last minute to make the appointment I let them know that no one had told me I needed to make a time for a blood test. She still sounded irritated but gave me an appointment with another doctor since mine was on vacation.
I wanted to do anything to take away the knawing pain in my head. I drove myself over to the west side and to my friend and hypnotist who gave me a wonderful and relaxing session. I drove to a second appointment with someone who does bio energetics. I drove for 2 hours home in traffic but when I got back, some of the specifically nasty elements of the chemo hangover had lifted. Hope returned, the end of pain was in sight.
I went to the doctors office and the first thing they did was weigh me. The constant weighing is terrifying. Especially since the IVF had inflated my ovaries and made me carry some pre- pregnancy weight. I got on the scale and almost died. It was 8 pounds higher than I had ever been in my life. I had heard that chemo made you put on weight but I was still in a state of shock. A few minutes later I heard a man’s voice say “thats ridiculous, take her to the other one”, I was led into another exam room and reweighed. I was in fact 8 pounds less than the first scale. I was so unbelievably relieved.
The doctor who was covering for mine speedily came in to tell me my white blood counts were very low and mumbled ‘stay away from the mall and sick people’. He said I needed to come in every day of the week for Neupogen shots to raise the white blood count. The nurse who gave my shot said the side affects were slight joint pain and to have some advil handy. I went home and was so exhausted I slept the rest of the day.
I got my second shot and asked for more clarification about where I could and could not go. I was left in the exam room for 30 minutes. I could hear the nurses talking down the hall and I knew she had forgotten about me. I eventually walked outside and her face confirmed she had forgotten. She called down the hall “Can we just give you the answer tomorrow?” I said I needed to make arrangements if I am not supposed to be in public places so I really needed to know today. I never saw the doctor the message I got was no yoga, no public places. I went home and slept. I started my post IVF period which I was warned would be extremely heavy.
I woke up in pain and even more exhausted. It took until 12 for me to find the energy to get in the shower. I called my friend Tiffany who came all the way from Weho to take me to the doctors as there was no way I could drive. It felt like small needles were sticking into my bones. The pain got increasingly bad but my pride wouldn’t let me show just how bad it was. I told the nurse I was in a huge amount of pain and I was well beyond taking advil. He recommended vicoden and then gave me another shot of the Neupegen.
Tiffany dropped me home and I went to my bedroom where I had left-over Vicoden from a previous surgery. As I got in my room the needle piercing pain turned into a full knife stabbing me repeatedly in my back, my hips and my thighs.
I screamed as the stabs came in and out. Every move I made caused the searing pain to intensify, but in order to feel better I had to open the vicoden and take a sip of water. It was the hardest thing I have ever had to do. I was incapacitated by pain. It took 20 minutes for me to take the vidoden. I later found out that the way Neupegen works is by stimulating the bone marrow to create white blood cells, which is why the the stabs felt so deep, the pain was in my bones.
I texted my best friend, Bethany, who left work to come home to look after me. The vicoden worked for about 30 minutes but then the pain started to come back and by 2 hours I was being stabbed again. I took a second vicoden after 3 hours and then for every 3-4 hours throughout the night and the next day. Bethany called the doctors office to ask for a prescription for more Vicoden. She found out I did not need to come back in for another shot. She gave them the pharmacy phone number, Lauren went to pick it up for me but it wasn’t there. This is the second time there has been a problem with the pharmacy and this doctors office. I was incredibly lucky I had enough vicoden to get me through, I dread to think about if I depended on the doctors office.
I woke up with the effects of too much vicoden. I couldn’t stand up, I was nauseous, dizzy and tired. After years and years of being almost medicine free, within weeks my body has been through two rounds of general anesthsia, pumped full of IVF hormones, given chemo, injected with Neupogen, an now, while having a very low blood count combined with a horrendous period, I was full of crazy amounts of Vicoden. I was so out of it, I didn’t realise the date and I didn’t get to call my sister on her birthday. I was heartbroken that everything I am going through makes me feel the world is lopsided that I am fighting just to be, and I feel have so little to give to anyone around me. Bethany, Jesse and Lauren rallied around to bring me tea, tease me til I laughed, let me vent and make me toastee sandwiches.
Bethany called back to the doctors office, was put on hold for 20 minutes, hung up on. Called back and selected the operater button to page the person she was trying to reach, to be told by the operator “I don’t page”. After calling and calling she eventually got through and we asked since the prescription hadn’t gone through if we could have percoset. At this point I was scared about the weekend and the pain coming back. My doctor was still on vacation so I had noone to ask what I should take. The office staff told Beth go into the office to pick up the prescription, by the time she got there I had heard of two friends reacting badly to percoset, since I hadn’t taken it before, I decided I should stick to Vicoden. The lady in the doctors office was angry about the change and unbelievably rude to Beth even though it was the doctors office who didn’t call in my prescription in the first place.
I stopped taking the Vicoden and started to rethink over a conversation I had with the Wellness support nurse. She said doctors offices shouldn’t behave this way, had I not called myself for my blood work I would have not known to stay away from public places and potentially could have gotten an infection and god knows what that could have led to. She said my life was way more important. This should never have happened. Somebody should have told me about the blood test. The first doctor should have told me more about what a low blood white blood count means and explained more about what is safe to do and what the signs of an infection are. The covering doctor also failed to tell me about the stabbing pain being a fairly common reaction to Neupegen and didn’t tell me how to deal with it if it happened. The nurse that I complained to about being in such pain should not have ignored that and proceeded with another shot. He should have called a doctor and perhaps let me know I could have waited a day between shots. The pharmacy mishap should have been handled politely with respect to the fact it was pain medicine and not a random trivial request. I am heartbroken that my trust is broken. I am heartbroken that instead of trying to heal my energy might be now going into finding a new doctor. Although I love my doctor, I don’t trust the staff . I am debating switching to another center mid treatment.
I slowly recovered over the weekend and even managed a walk around the block. Jen, Natalie, Jesse, Howard and Jesse’s mum all stopped by to visit bringing the sweetest, kindest gifts of food, relaxation cds and lolipops!
I have experienced the lowest low and most intense pain this week but I feel I was incredibly lucky. I luckily found out the info to make the appointment for the blood test. I luckily had Vicoden. I luckily had amazing friends who went to the pharmarcy, who called the office, who fed me, who put my forms in the mail. I am lucky that my wonderful friend organised my other friends to contribute to a fresh organic box of veggies to be delivered to my house which was particularly thoughtful and kind since I have been house-bound for a week. I am lucky that Lauren bought vinegar to help wash the veggies so that I could eat them safely even with a low blood count. I am lucky to have an amazing sister who gave me strength even in the darkest moments of chemo. I am lucky to have a wonderful mum who is supportive and patient. Lastly I am especially lucky that I wasn’t really 8 pounds heavier.