One Year Cancer free!

A month or so ago I had a scan and the world's worst blood test. As you will have read I'm absolutely terrified of needles, so I therefore hate the blood tests. This time the needle was faulty and the whole thing fell apart in my arm. The nurse was digging around in there for what felt like forever, while I was crying my eyes out and yelling at her to hurry up and get it out of my arm. Once it was out and I had calmed down she had to try again in the other arm. I know the fear is totally irrational, but I just can't deal with it, and situations like this just make it so much worse!

Anyway, I was meant to go to my oncologist a few days later for a check up and to get my results, but I got a phone all from the clinic saying he was stuck in Tasmania due to the Chilean volcano ash cloud, and couldn't get back to Melbourne. So my appointment was postponed. Then after a few other delays I finally got my results…cancer free!

It’s quite funny that I get so worried about the checkups and then when I get there it’s such a relaxed and laid back encounter. I walk in and sit down, my oncologist tells me my blood tests/scan was fine, he feels around for lumps, listens to my chest and then I leave. Easy. Then I spend the next three months worrying again!

So I’m not really sure how you’re supposed to measure this type of thing. My treatment finished on the 15^th of June last year, but the PET scan that officially showed that I was cancer free wasn’t until the 5^th of August. Either way, I’m now more than a year in remission!

Moving on has been a challenge in many ways. Physically I am only just starting to get my energy back. I still feel constantly tired and achy, but lately it’s on the improve. I still don’t have feeling in my finger tips and I have very little saliva, but I don’t have cancer, so who cares about those things?!!!

I think this next year will in a lot of ways be a year of reflection. I already notice myself thinking a lot of the time “a year ago today I was ...”. In some ways it seems like it only just happened, in other ways it seems like it’s been forever. Some things feel like they never happened to me. Perhaps it was all just a really bad dream that I can just forget ever happened.

I’m having a bit of a tough time lately thinking about others who aren’t so lucky. I know that there’s such thing as Survivor Guilt, but I’m not sure if that’s the right way to describe how I feel. It’s an incredibly strange concept. Obviously I’m so grateful be here, but I’m so angry for those that lose their fight to this terrible illness. It’s so unfair and is just another reason I’m so angry at cancer.

One year out, once again I need to thank everyone close to me. Without my friends, family, colleagues, students and www.cancerforums.net friends, there is no way I would cope with any of the things I’m faced with. I love and appreciate you all very much.

Finally, since beginning this blog, I have 11,500 page views. I have received such great feedback from other lymphoma sufferers about how helpful they have found it to read my journey, and that makes me so happy. It’s a pleasure to know that my experience can help others facing the same problem.

I want my hair back.

With my wedding coming up in a few months, I am so ridiculously obsessed with my hair (or lack thereof). I desperately want it to grow faster, but in reality there is no way it can grow fast enough. I’m at the point where I’m obsessively checking the growth nearly everyday. I’m being totally irrational about it.

I’ve been investigating hair extensions, but the problem is that the front, top and sides aren’t long enough to cover the joins. I found a place in Sydney that fuses on the hair strand by strand, so there are no visible joins. However it costs $5000. I might be totally obsessed and quite irrational, but I’m still sane enough to know that is ridiculous!

During my treatment, I felt nausea, pain and extreme exhaustion. I now face a constant anxiety that the cancer will come back. Yet, I am stupidly so concerned about my hair. It feels like such a shallow thing to be worried about. While I was having treatment, hair loss was a tangible sign that I was sick. For me, it was a constant reminder that I was having chemo, that it all really was happening to me. Walking around bald in public wearing a headscarf was like wearing a flashing neon sign declaring, “I have cancer, please stare at me”.

Now that my treatment is over, I’m supposed to be getting back to ‘normal’. However, my hair is a constant reminder of what I’ve been through. To me, my short hair is symbolic of my cancer. I hate the thought of looking at wedding photos for the rest of my life knowing that the first thing I will see is cancer.

I know that I am not my hair. I know that I will still look great on my wedding day with short hair. I know that it is incredibly vain of me to care about such a superficial thing. Yet none of this knowledge stops me from wanting to cry every time I think about my hair.

Furthermore, I feel so incredibly guilty for feeling this way. I’m healthy, I beat cancer. Why do I care about my hair? When I first lost my hair I said that I’d chop my arms off if it meant I’d be rid of the cancer, and lots of people actually do lose organs or limbs due to their cancer. Many people lose their lives. I’m so angry at myself for caring so much about this.

I know I have to just deal with it. I know there is nothing I can do to change it, but really it’s just another reason why cancer is so shit.

Chemo brain is preventing me from thinking of a title for this post!

I'm now about five weeks out from my last radiation treatment. It feels so good to be done with this crap. I had an appointment with my oncologist on Wednesday and I had a great realisation in that appointments are a rarity now. I don't have to go all the time anymore. It's no longer a regular part of my life. Even more importantly these appointments don't result in treatment anymore. I can walk in, have a quick chat and check up and then walk out.

Many cancer patients talk of 'chemo brain'. It's been three months since I finished chemo and I still can’t remember things very well. Apparently it's a common, long-term side-effect. Unfortunately even prior to my treatment, I wasn't great at remembering things I was supposed to do, so it's like a double edged sword for me. When I did my psychology degree I remember learning about retrospective and prospective memory. That is, whether the information to be remembered is something from the past or is to be remembered in the future. I have always had a great retrospective memory. I can remember names, places and events from my past in great detail. However my prospective memory has always been very poor! I never remember to do the things I'm supposed to. I've even tried making 'to do lists' or leaving myself notes, but I forget to look at them!

The problem I'm facing at the moment is that the chemo seems to have messed with my retrospective memory, the one that had always worked well. I can't remember where I parked my car, whether I've already told things to people, and I'm becoming terrible with names. I just can't remember the things I used to have no trouble with. The most frustrating thing though, is that I constantly find myself standing in a room, wondering what I'm doing there or what I was going to say to someone. I'm even forgetting mid-conversation what I'm talking about. Sometimes I just want to sit down in the middle of the room and cry about how frustrating it is.

On Wednesday my oncologist ordered a PET scan for me in a few weeks. I now feel incredibly anxious. I so desperately want them to look at the scans and tell me officially that I'm fine. I want to be cancer free for obvious reasons (to survive!), but really, I've just had enough of the whole thing. I’ve had enough of living with it, and I've had enough of talking about it. I’m ready to just put the whole thing behind me and look ahead. When people ask me how things are going, I'm ready to talk about my life, not cancer. I’m ready to just become me again.

It's Finally All Done!

A bit of catching up is needed again in regards to my blogging.

My last post was about my first radiation session, so I’ll pick up from there. Wearing the mask for the first few treatments was pretty awful. There were little lines in the wood on the roof, so I would focus on counting those to take my mind of the feeling that I was suffocating. Thankfully the treatments were very short, as were the waiting times. Most days it’d be about 10 -15 mins from parking my car to getting back in it to go home!

I think after the first week I had gotten used to the mask and it didn’t really bother me any more. About 7 or 8 treatments in I started to get a very red chest and my throat started hurting a bit. It didn’t really make me tired, but it was very draining to have to go every day.

After that my chest got redder and drier as the treatments progressed, thankfully my throat never got any worse. I did get a dry mouth that was particularly bad during the night. As my chest got drier it began to really itch and it was so difficult not to scratch it. I’d often have to sit on my hands so I wouldn’t touch it.

It’s now been just over 2 weeks since I finished (yes, FINISHED!!!) my treatment. Still feeling fine! The redness is going away and it’s nowhere near as itchy.

I’m now well and truly ready for things to go back to normal for me! I feel like in a lot of ways my mind has already moved on and now I’m eager for my body to follow.

Anyway, I’m done, I’m done, I’m done! No more treatment!

Starting Radiation

On the 18th of May I had my first of 20 radiation sessions. These are daily for four weeks (no treatment on the weekends). I went in for my first treatment and they put my mask on and strapped me down to the bed. They spent a few minutes lining me up correctly with the lasers (and speaking what sounded like another language), took an xray, then left the room while they radiated me.

The machine has a big arm that reaches above the bed and over my face (Click here to see a picture of one http://folhealth.com/Varian%20iX%20with%20patient.jpg). The big circle part over your face (very technical terms I'm using!) open up and then you hear the machine turn on and start radiating. You can't feel or see anything. Then the whole machine rotates and the arm goes underneath you and you are radiated again from the bottom. Mine is twice from the top and twice from the bottom. All up it only takes about 2 minutes from the time the technicians leave the room, till they come back in and take my mask off.

After my first session I saw a nurse who explained the side effects. I was told not to put any chemicals on my skin. That means no perfume on my neck/chest, I have to be careful when washing my hair that the shampoo doesn't go on my neck, chest or back. I've been told to regularly use sorbolene cream to stop the skin from drying out too much. She also told me that radiation causes fatigue and that this would be worse about 2 weeks after I finish the treatment.

Chemo done.

So that was an experience I wish I'd never had! I've now finished my six sessions of R-CHOP21 and am so glad it's over and I hope I never have to go through anything like that again. I have no hair, puffy black eyes, numb finger tips and I'm fat (I've put on about 7kg and have lost all my muscle tone). But, at least I'm beating this thing.

Worst of all I am feeling absolutely exhausted. My body aches all over, particularly my arms, legs and neck and nothing seems to help. I'm now just thankful that there's no more treatments, so it will hopefully start improving soon. Although apparently the radiation causes fatigue, so maybe I still have a while to wait.

I'd like to say thank you once again to everyone I know for their support, friendship and encouragement. I feel very lucky to be surrounded by such wonderful people.

Only one more session to go

I cannot ever recall my body being so tired. I don't really feel so tired in the sense of needing to sleep more, but my body is just exhausted. I want to sit down all the time and my arms and legs just feel like dead weights. I've also begun to get really achy muscles during the past week.

My last chemo session was awful. The needle got bent in my arm so after much digging and rearranging it was moved to the other arm, where the same thing happened! It would work for about a minute, then the machine would start beeping saying that it had stopped. We did some rearranging and so for the last 40 minutes Leah and I were holding it on an angle where it would keep going. This worked, but unfortunately Leah had to push down on it really hard, so it was quite painful. Furthermore, I still have sore bruised arms a week and a half later.

I have a CT scan next week and I'm feeling a bit anxious about it. It's really hard not to get my hopes up about a positive result. I'm trying to not think about it.

Nearly two thirds!

Tomorrow is my fourth treatment, which will make me two thirds of the way through it. For some reason I think that saying I have one-third of my treatment left seems like less than saying I have 2 treatments to go!

Dave, our school's PE teacher (and one of the most thoughtful and genuine guys I know) has organised for the students to walk to school on each of my treatment days. They meet down the road from school and walk up over the big hill to represent overcoming a challenge, while I overcome my own challenge. Furthermore, they each give a gold coin donation which goes to the Cancer Council of Australia. On my last treatment there was such a big crowd they needed a police escort up the road!

Over the last week I've begun to get neuropathy in my fingertips. The tips of my thumbs and my little finger are numb. It feels sort of like pins and needles, except it won't go away! I spoke to my oncologist about it and he said it's likely to get worse and unfortunately unlike other side effects it can take a long time to go away after treatment stops. But, like the hair loss I'd rather have numb fingers than cancer!

Once again I want to say a huge thank you to all my awesome friends and family and thank you to everyone that has left me such lovely comments on this blog. I love you all!!

A fabulous week!

First of all I’d like to start by saying that I've re-read my last post and am definitely not feeling that way anymore. After the initial shock of my hair falling out, I actually feel pretty good about it. I guess it's a visible sign that the chemo is doing something. If it's killing my hair cells then I can be more confident that it is also killing the cancer cells!

Now I can go on to tell you the good, well actually great, things that have happened to me this week. To begin with I went wig shopping with my two best friends and my step-sister. We bought a wig and a whole heap of scarves and had a lot of fun trying things on in the shop. My long-standing suspicion that I have a pin head was confirmed when the lady had to take the wig in for me as it was too big, and was reinforced again when I was trying on hats and they were all falling down below my eyes!

We also went out for breakfast –my first outing without hair. I was thrilled when I looked at the menu and saw blueberry bagels with cream cheese. Something I LOVE and haven’t had for ages! I went up to the counter to order them and the guy behind the counter said “Sorry, they didn’t get delivered today so we don’t have any”. Forgetting about my bald head and CanTeen Bandanna I replied “oh no, I’m devastated. I was so excited when I saw them on the menu, I think I might cry”. I was of course only joking, but the poor guy went white as a ghost and looked like he wanted to crawl into a hole. He must have been thinking ‘oh no, I’ve upset the poor cancer lady’.

The following day was Australia Day which I spent at my Dad’s house. It was lovely to just relax by the pool and chat with family. The next great part about this week was going back to work, as the summer holidays have now finished. I know work is not normally on people’s list of great things, but I love my job and the people I work with, so going back and seeing everyone was wonderful. My colleagues were very supportive and it was great to have a sense of normality in my life again.

On Thursday I had an appointment with my oncologist, which was definitely the highlight of the week. He was very pleased with how well I am taking to the chemotherapy. He also told me he thought that my ‘down to earth’ personality and positive outlook would mean that I would have less side effects. That was a nice compliment to receive and also reiterated to me how important the power of the mind will be in all this. Furthermore he said that as all my symptoms had disappeared (no more visible lymph node swelling, fevers or night sweats) he was confident that my next x-ray (in 3 weeks time) would give good news!

I went into my appointment armed with a list of questions I had been wondering about since my last appointment. What should I be eating? How often should I exercise? Can I have a glass of wine? What exactly are B-Cells? Should I have paid more attention in biology in high school? I bombarded the poor guy with so many different things he ended up lending me a medical book on lymphoma! The book is very interesting and has answered many of my queries, but I will probably now just go to my next appointment armed with more complex questions!

Friday was the not-so-great part of the week. Chemo number 2. My step-sister, Dani, came with me this time and thankfully it was a much shorter session this time. It was still about 5 hours, but at least it wasn’t 7 hours again! The worse part of the day was when the nurse tried for 10 minutes to get the cannula in the back of my hand, then gave up saying that my skin was too tight. I don’t really know what that means, but I’ll take it as a compliment and assume she meant it was youthful and firm! They ended up putting it in my arm which took about 10 seconds, but I now have a bruised swollen lump on my hand!

I left the hospital feeling fine and even went for a short walk when I got home, as I wanted some fresh air. However, about an hour later I was sick. Panic set in a bit then and I worried that I was going to get the days worth of nausea and vomiting I had heard that most people experienced. Luckily, that was it and I’ve felt pretty good since. Like last time I felt queasy all day Sunday and have been unusually tired and vague, but if that’s as bad as the side effects get for me then I’m stoked!

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 I wondered? 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.