This is a strange story for me to write. It will at times be a sad story, in many ways it will be happy and perhaps even funny. It will be an adventure that entails anxiety, flirting with danger, fortitude in the face of adversity and many attempts to look on the bright side. There will also no doubt be moments of anguish and despair, and a lot of uncertainty. It's a story that will hopefully be cathartic for me, but also interesting and perhaps informative or even entertaining for others.

Sunday, January 24, 2010

Hair today, gone tomorrow

So, it’s happened…hair loss. Well sort of. It started on Thursday. Was there more than the usual moulting on the hair brush? No, I’m just being paranoid. Then Friday there was definitely clumps coming out as I brushed it, then throughout the day every time I touched my hair I’d get small clumps on my fingers. Saturday morning I washed my hair and got a HUGE fist fall of hair. I surprised myself by bursting into tears.

You see I’d thought I was ready for this and I thought I was fine with it. Obviously I’m not as fine as I thought! I’ve been waiting for it to happen since day one. Hair loss was the only side effect my oncologist said was inevitable. But, as I’ve learnt so many times in the last few months, being prepared for something doesn’t make it any easier.

So after spending the day yesterday having quite large chunks of hair falling out, I decided I had to do something. So much hair had fallen out over the last few days, yet there was still no visual damage so I could have left it as it was. I have read that a lot of people’s hair only thins and they never actually lose it all, but I couldn’t bear the thought of my hair being so fragile for the next few months. Brushing it gently and tying it back loosely so there’s no tension on the roots, and constantly asking those around me “are you sure it’s not noticeable?”. So this morning (Sunday) when I woke up with hair on my pillow, in my mouth and in my eyes I decided to just shave it off.

My two best friends came over and we decided to cut it a few different ways first to see what other styles suited me! First we cut it shoulder length, then a shaggy just below the ears style, then short and spiky. Then all of a sudden the fun was over and it had to be shaved. This was very confronting and made the whole cancer thing seem a lot more real. I shed a lot of tears, but now a few hours later I think I’m ok with it.

To tell you the truth I’ve never liked my hair and have on many bad hair days exclaimed that “I should just shave it all off”. I have this wavy, curly, frizzy hair that either needs to be straightened or packed with product and styled carefully to make the curls sit properly. Most of the time I can be bothered doing neither of these things, so it ends up tied back in a ponytail.

I’m going tomorrow to buy a wig, but I’m unsure yet how often I’ll wear it. I’ve been to look at wigs already and have decided on a fairly short, synthetic wig. I was originally thinking I’d get a human hair wig, but I found out they’re heavy and hot to wear and worst of all you have to wash and style them. As part of the whole ‘look on the bright side’ thing, at the moment I’m stoked about not spending any of my time on my hair! The thought of my wig in the sink looking like a drowned rat is not appealing at all!

So right now I’m wondering which celebrity to compare myself to. Am I glamourous like Natalie Portman, tough like Demi Moore in GI Jane or a wacko like Britney Spears? I feel like singing ‘Nothing Compares 2 U’ or seeing if I can swim really fast!

Overall I think so far this has been the hardest part. I didn’t think it would be so bad. I have to remind myself that it’s happening in order to make me better. If it meant I’d beat this thing I’d chop my arms off, so temporarily losing my hair is nothing. Now that it’s gone I can look forward to the elation and excitement I will feel when it starts growing back.

Gobbledygook

Something that I’ve wondered a lot lately, is why medical terminology is so complicated. It’s overwhelming enough just to be told you have a serious illness let alone trying to decipher what they’ve said. Why can’t they use monosyllabic words instead of so much gobbledygook? People ask me questions about my diagnosis and treatment and when I respond they look at me as though I’m speaking another language. I’m therefore learning to respond with the simpler versions. For example my diagnosis is Mediastinal Large B-Cell Lymphoma, the simpler version being Non-Hodgkins Lymphoma, simpler version again is Cancer. Mediastinal, means it's in my chest. The same applies to my treatment. I’m having a combination of five drugs which are Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisolone. Also known by the simpler acronym: R CHOP 21. It's easier for me to say to people that it's Chemo.

So that brings me to my first chemo session. The word 'chemo' conjures up images of hair loss, dark circles around eyes, weakness, sickness and the list goes on.After all it is a treatment designed to kill your body's cells. But for some strange reason I wasn't that scared. Perhaps it was because I know this has to happen to make me better, perhaps because I’m lucky enough to have so much support, perhaps because I’m so scared of the cannula being inserted into my vein it is overshadowing the fear of the chemo!

So I dosed myself up on Lorazepam for my needle anxiety and headed to the hospital. I swallowed a bunch of tablets (can’t remember what they were. Steroids and anti-nausea I think), then was hooked up to the IV tube. The first drug, Rituximab can cause a variety of serious allergic reactions, so is given very slowly the first time while you are closely monitored. For the four bags of poison to be pumped into me took about 7 and a half hours. Thankfully, all went well and I had no reactions/side effects from any of the drugs.

Overall the day was fine and I even had a few nice experiences. First of all, my nurse was great. She was very friendly, reassuring and attentive. She was also very patient with my lorazepam-induced daze. Although I knew that my mind was cloudy and I wasn’t speaking very clearly I persisted in trying to ask her questions and trying to chat!

I also have six ‘chemo packs’ that my friend Melanie made for me. I have one for each treatment and I’m only allowed to open them at the hospital. The first one contained lots of nice things to read and do during the long ordeal and to distract me from the needles! My dad also bought me a Nintendo Dsi with a brain training game, and that along with movies on my laptop helped pass much of the time.

I left the hospital thinking I couldn’t possibly be feeling this good after having bags of poison pumped through my body and perhaps the bags had accidentally just contained water. I also left with a bunch of brochures on side effects, wig shops and lists of do’s and don’ts. I have new rules to wash my hands before I eat or touch my face, since my immune system will be virtually non-existent for a while.

I slept like a log that night (probably due to the lorazepam) and woke up feeling pretty good. I felt alright all day Saturday, but because of the steroids which I have to take for 5 days after each treatment, I couldn’t get to sleep properly that night. I felt a queasy all day Sunday, but found that if I ate small amounts regularly I was fine. Apart from being really thirsty I’ve really had no side-effects so far. I’m not holding my breath for this to be true after all my treatments, but I’m going to enjoy it while it lasts.

The journey starts here

I am a 27 year old primary school teacher from Melbourne, Australia and was ‘officially’ diagnosed with Non-Hodgkin’s Lymphoma on the 30th of December 2009. Up until this time I have never really been sick. I don’t get colds or stomach bugs, I’ve never had the flu, haven’t been on antibiotics since I was about 12 and I’ve never been to hospital. I play sport and I eat well.

My lymphoma journey began a few months before my diagnosis when I’d been experiencing pain in my chest. At times it was incredibly painful and I couldn’t seem to get a deep breath. It felt like a hippo was sitting on my chest! I went to a physio which made it better for a few weeks. It then came back so I tried a chiropractor. He also seemed to fix it but it came back a few weeks later. I went back to the chiropractor and every time he pushed on my chest I would cough (a really deep, yucky cough). So he took my temperature. It was high, so he told me to go to the doctor. The doctor said perhaps I had a chest infection and put me on antibiotics. These seemed to be great and the pain was gone within a few days of taking them.

A few weeks after that the pain came back again. One night not long after this (November 24th) I was watching TV and thought that my neck felt tight. I went to rub it and realised it was swollen. I had a big lump and all around it was so swollen you couldn’t see my collarbone. I assumed this was still a chest infection (even though I'd had no coughing) and went back to the GP. He sent me straight away for a chest x-ray which showed a swollen node in my chest.

He started asking me if I'd had any other symptoms apart from the fevers. I had been having bad night sweats, but I thought it was just the heat wave we were having and was telling my fiancé we needed an air-conditioner in our bedroom! I had also been very tired but just put that down to being busy at work and the time of year (lead up to Christmas).

The GP sent me for an ultrasound of the neck, a CT Scan and blood tests. This showed that the supraclavicular node (near collarbone) was 7cm long, I had a swollen node in my chest, and I also had a lump in my breast. The GP told me he thought I had lymphoma. How could I have cancer? I thought there must have been some kind of mistake, I don’t get sick so how could I all of a sudden be this sick? Especially when I looked well and apart from the chest pain and a bit of tiredness felt ok. I’d spent months thinking I had some awful muscle injury and all of a sudden I’m faced with this instead.

I was given a referral to see an oncologist, but as I don’t have private health insurance I would be on a waiting list at the public hospital. The waiting was awful. I just wanted to know what was wrong so I could deal with it. Somewhere in my mind I was hoping that all the test results meant nothing and maybe I did just have some kind of infection.

I went to see the oncologist on the 3rd December. He told me he thought I had Hodgkin’s Disease, but a biopsy was needed to make a proper diagnosis. He booked me in for another blood test and a needle biopsy of the neck lump and the breast lump the next day. The following day (Friday) the oncologist rung me to say they were inconclusive and they needed a bigger sample. He said it looked like an aggressive non-hodgkins lymphoma but I would need surgery to remove the lymph node in my neck for a biopsy. He booked me in to see a surgeon on the Monday.

I saw the surgeon on my 27th birthday and he was confident he could take out the node and I would be only in hospital for the day. But, being a public hospital patient I had to go on a waiting list. He said he would put it as urgent but it could take up to a month. More waiting. More not knowing.

I received a letter from the hospital a few days later and was booked in for the surgery on the 23rd of December. I was happy it hadn’t taken a month, but having never had a general anaesthetic before I was worried about how I would cope and that I might be sick for Christmas. My Nanna, Mum and sister all get bad reactions to the anaesthetic, so I wasn’t too optimistic! Luckily the surgery went well, I wasn’t sick and was home by mid-afternoon and feeling fine. Once again more waiting though. I had no idea how long it would take to get the results and I assumed the Christmas and Boxing Day holidays would make it take longer. I just tried to put it out of my mind and enjoy the festivities.

I went back to see my oncologist for the results on the 30th of December. I was diagnosed with Mediastinal Large B-cell Lymphoma. As it’s an aggressive cancer the oncologist said I would need to start chemo the next week. He booked me in for my first session of R-CHOP 21 on Friday the 8th of January. He said the first session would take 6 hours. This terrified me as I have an intense needle/blood phobia and couldn’t bear the thought of a drip in my vein for this long.

So, I may be the person who doesn’t get sick, but I’m now definitely sick. Ahead of me is about 18 weeks of chemotherapy (one day every 3 weeks), followed by a month of radiation to the chest.

I’m still feeling very “is this really happening to me?” and in some ways I think I’m a bit in denial. But, regardless of how I feel about it the journey has started.

Welcome

Hello and welcome to my blog!

I have decided to record my cancer journey for a variety of reasons. The first is that I like writing and getting my emotions, experiences, frustrations and hopefully triumphs down on paper (or in this case laptop) will be therapeutic for me.

Also, in my experience thus far I have found it very beneficial to read others’ experiences. It helps to read that other people are going through the same emotions and are suffering from the same side effects. It helps me to feel more ‘normal’. I would like this blog to be a place where others can gather information and find comfort and support.

I also hope this can be a place for my wonderful family and friends to keep up to date with how I’m getting along.

Feel free to leave a comment on any of my postings. I’d love to hear from you!