Tuesday, February 5, 2013

Chemo no. 5

It's been a week since my first chemo. Feeling human but not 100% myself yet. My body is still quite tired - this chemo specifically lowers your white blood cell count so I can feel my energy being sapped. Some days I may have loads of energy and some not. It's only a week that has gone by however so onward we plod to 'normality'. This chemo specifically is a bit different to the ones I have had lately - I slept (much like a hibernating bear) so much. My body was exhausted as hell. I prayed to the toilet gods for a brief stint, sore bones and body, upset stomach and bloated as can be.

As per usual we had some problems with medical aid so my dad offered to pay for the first 2 rounds - just so we could see if it was working and to get started on it ASAP. Bless my parents heart - always there for me when I hit a rut. Always... The day Helen passed away was actually the day my medical auth got declined. Once again they declined a necessary chemo regime. My dad knew how down and scared I was considering this is one of my last options left for chemo at the moment (not forgetting that Heli passed away too which made reality all a bit too fitting...). One of the most stressful days I ever had you could say. I was an emotional roller coaster ride.

It's been almost 3 years since cancer evaded my body. I do get tired of all and having my life so booked out in doctors appointments, having to stay away from people with the smallest cold, chemo days, resting just makes me so frustrated at times. I just wanna say - come on chemo - WORK for crying in a bucket!!! I feel so blessed for being alive and having the things and people in my life but I do want to live this life cancer free at some stage. Now, would be good. Helen suddenly passing away just hit home very, very close to my heart and it makes me scared as hell.

Speaking of Helen - her send off was truly beautiful. As expected the church was packed and it was a lot more different than your average funeral. Helen was never average that's for sure so they made a send off/ celebration of her life in a truly beautiful way. Friends and family were not allowed to wear black - you were to be in your most colourful clothes and we were asked to bring sunflowers to represent Helen. A true representation of this colourful being. I always thought that the flower represented a person like Helen but when the minister was talking about the sunflower I thought - wow. How perfect... As a reminder to myself and to commemorate my special friend, I decided I am going to plant some in my garden. As you can all probably tell by the many, many mentions of Helen - I truly do miss her.

Wednesday, January 16, 2013

Heavens Gain

It’s been a day since my beautiful friend and ‘c sister’ passed away. My heart feels so sad and I already miss you dearly my friend. How do I fight this fight without you?

Helen and myself met in February 2011. Our trial doctor put us into contact with each other seen that we were both so young and positive. We were just about the youngest patients in the unit. I had been fighting the fight at that stage for about 8 – 9 months already. Just on speaking to Helen on the phone I knew we would be great friends – on receiving diagnosis she jumped into fight mode and was as positive as can be. We discovered we were both huge fans of sushi and decided on meeting the very next day over dinner and drinks (my kinda girl) while she ask me questions about the treatment and life in general.

As treatment went by we grew closer and closer chatting every day over blackberry and trying to schedule our chemo's together so we could motivate each other and keep the spirits high. It was so nice to have someone have the same problems as me for once. Our friends were always great support but there was no better person to understand what you were going through other than my breast buddy, Helen.

Helen always lit up a room when she entered  - everyone adored her. She helped me with some fundraisers and volunteered where she could to always help other people. She had the most amazing spirit to fight. She often made me look bad with her ‘healthier than thou’ eating habits and her ability to do the Cape Argus Cycle tour. She ran races – she just always seized to amaze me. You would literally have sworn that nothing was wrong with this girl. It’s a bizarre concept to think (and please don’t hate me for thinking this because I know some of you will crap me out) but how is it that I am still here? Aaaaah the memories and times we had together were so amazing. So inspiring...

I am sure you would remember back a few posts about me being at Helen & Alwyns beautiful wedding. In mid December they left for their honeymoon. They were so ecstatic to see their family and go skiing together. A magical white Christmas – the way Helen was used to having Christmas being from Germany. By the sounds of it – they loved it and although Helen struggled a bit, she managed to ski the slopes of the Alps. My wonder woman... Sadly, a couple days before she left to come back home she found that her stomach was a bit swollen and she was in quite a bit of pain.  With my own issues I saw her at the Doctor on the Monday. This is the first time I ever saw my friend really go through a rough time. I could tell she was uncomfortable and I could see she was so saddened by her honeymoon ending that way. It was such a shock to see but yet she still acted concerned about me because I had to change chemo’s again. She always thought of other people above herself. That day she was scheduled to have fluid removed from her cavity below her liver. It seemed as if her liver worsened and was seeping some toxins. She went home for a few days to try recuperate but sadly she was back at the doctor that Thursday in some serious pain. She was admitted to hospital for pain, nausea and the fluid in her liver (which was removed again…). It was a shock and suddenly I noticed that Helen wasn't messaging me anymore like we had done every day.

I went to my doctor on that Friday for blood, CT and bone results. Things were getting worse with me too.  I needed to get onto something quickly. My mom happened to ask my doctor about Helen (we share the same doctor) where she looked at me and asked me to please try block what is happening to her against myself. She was concerned because Helen was in a rut and wasn't sure if she could fight to get out of it. I broke down in tears because it just seemed like such a hard hitting reality. How could this happen so fast? How could I block the pain and fear that I knew my friend was going through? We were so similar in diagnosis that it just hit so close to home for me.

I decided to go visit Helen on the Sunday where I met her mom, dad and husband. It was tough to see her like that. She was going in and out of consciousness but still tried to fight to get up to go to the loo etc. she was determined! It was incredibly hard to see because my friend and cancer buddy didn't recognise me anymore. She just fell right asleep. Her mom had hoped she would recognise me but sadly she didn't…

I know you’re watching down on me (and everyone else) – I’d like to think of you as my guardian angel. Even without you,  your spirit and inspiration will help me through this battle and  everyone who knew  you will keep you in their hearts – living the Helen way…to seek beauty, love and laughter every day we alive. As hard as it is now to fight this fight without you I imagine you up in heaven smiling down on us, making yourself comfortable and awaiting to be reunited with all your loved ones, one day.

I look at my phone and can’t bring myself to ending our last conversations from just last week. We made a promise to fight no matter what and that one day we would be having a big celebration to celebrate us conquering this disease. One day we will Helli – I’ll have to miss you from afar for now and keep up the ‘helen spirit’. You will never be far from my Heart and Mind.

A special note to Helens husband, Alwyn. Thank you for being the most amazing man to my friend. Thank you for not being judgmental on such a disease and loving Helen regardless – wanting to spend the rest of your lives together no matter what the future had in store. In my own experience it’s extremely tough on the partner to stay so strong and I salute you for being such a knight in shining armour. I am so glad that you shared an amazing time together on honeymoon, creating some great memories.

Rest In Peace my friend – you will always continue to inspire those you left behind…

Thursday, January 10, 2013

The Up's and Down's

Can cancer define who you are?

I got rather upset the other day as I was preparing a speech for a support group. The counselor had e-mailed me asking if I could tell my story, what keeps me motivated and how to 'live well' provided the situation. I wanted to finalise my talk by saying a list of things that could help for example ; get yourself a cancer buddy, try keep a routine, try live life as normal as possible,don't concentrate on the fact that you're ill. As I was thinking and trying to pick 'N''s brain for other possibilities he said that there was the obvious that everyone tries to live by: Don't let cancer define who you are. After thinking for a bit he said 'but I don't think it really applies to you...' I was mortified. 'How can  you say such a thing!?' Considering the circumstance I thought I dealt with my cancer in quite a good manner. I hadn't really thought about it but my life kind of does revolve around it - even up to how I earn my money, through my cancer magazine. It saddened me quite a bit - sure, we still do live as normal as a young couple can be but factors do affect us. I suffer out in the sun, my energy is sapped after doing chores, I struggle with fatigue walking in a mall, can't do xyz because I have chemo coming up, stresses with medical aid, recent hospital visits etc etc. Cancer really has defined who I am. Sure - it's lead me and moulded me to who I am today but it irritated me in a way because people now know who I am because of cancer. People wanted to know what I was about when they found out about my diagnosis. I was at a wedding recently and somebody asked who I was to the bride and groom. 'Oh - I'm Helen's cancer buddy, Nikki' - although I had never met the person before she knew exactly who I was. I was also a bit confused though that I chose that as my introduction. Clearly I have let cancer define me. It has however lead me to some amazing things, a career and people in my life.

OK - I have been naughty again. I saved the above in drafts meaning to get back to it but in fact never got back round to it. My apologies!

So much has happened lately where do I start?

My INR levels seem to be stabilizing. I'm still not sure how I get dosed on Wharfarin but magically after having a blood test done, I get an sms about 2 hours later giving me my next lot of doses for the next week or 2. An interesting fact that I found out on going for a check up to my doctor but did you know that Wharfarin was originally invented as rat poison? Somewhere in the 1940's Wharfarin was originally invented for the sole purpose as a pesticide. Madness right?

So - I have come up to having my 2nd edition of Live Well. Live Cancer. While the book is still small - it certainly is getting heaps of credit and big dreams of getting even bigger. My Next feature I am very proud of. Mark Pilgrim will be on the cover along with his story. He is such an amazing man that I have always followed and listened to on the radio. Here is hoping he's my golden ticket to success :) 

The magazine is certainly getting around which I am so thrilled about. Everybody is always so keen to receive them and they go like hotcakes in waiting rooms of doctors offices! Now I may not be making loads of money off this magazine while I am starting off but I do have a story which is simply priceless. It may be our way of our paths crossing but I'd certainly like to credit my mag for awareness. When my first edition was out - I got an e-mail requesting some books for an awareness breakfast. Happily I dropped the books off. Sadly I was in a bit of a rush where I had to go to my doctor but this certain lady told me about a lump that she had found in her breast. She had been a few months prior to a doctor to question it but the results came back inconclusive and told her to be back in another 3 months. In my rush I had told her that she really needed to go for a second opinion because clearly it was bugging her. She put it off and put it off and I eventually got on her case about it. I eventually said right - this is my doctors details. Visit him. She told me she was going to see her original doctor again for the call back. Her results seemed the same. Inconclusive. I gave her a call and insisted that she go to my doctor before she ended up in a mental hospital. This kind of uncertainty will drive you insane and in a nut house. She went to my surgeon and 2 days later she was diagnosed with breast cancer. The following week she was scheduled for a mastectomy (which was successful) and she will be undergoing chemo in just a few weeks time. Every time I visited her she introduced me as her hero. In no way do I feel like I am a hero. I am just glad that she went before it was 2 late. If I can create awareness and messages through my magazine, well then I feel like I have done a job well done!

I have had rather a shitty experience through chemo - I may hide it at times but I am still very hopeful and I try spread that wherever I go. With the support group I talked about in the beginning of my post I saw a friendly familiar face that I once upon a time came across when she had her first chemo. When everyone around the table was introducing themselves she looked up at me and said 'I would not be here if it weren't for that girl' pointing at me. I wanted to burst into tears. I felt so humbled. It makes me so happy to hear that little ol' me made a difference. That  makes my heart smile. I just hope that everyone else can pass that kind of thing on. Having your first chemo is such a daunting procedure. Nobody knows what the hell to expect as soon as that drip is opened and flowing into your veins. Seeing someone so scared while I am having my way too many to mention chemo is seen as almost a bit of a challenge to me. To get that patient to turn their fear into hope and faith is an amazing thing.

My last chemo happend on the 21rst of December. For some reason my body took a massive knock to it. It's almost 3 weeks later and I still feel exhausted and drained whereas it normally takes me just a week to bounce back. The symptoms I had were terrible. I had sore bones (everywhere from my facial cheek bones to my shins hurt), my appetite lessened, my stomach was upset. I was generally feeling very sorry for myself and I felt terrible because N, my better half was on leave. All I wanted to do was lay down and take it easy. On my day 8 I had my chemo again (which is normally a much lower dosage and allows me just a single day of taking it easy before I'm me and human again). Not even 30 minutes of taking that chemo and I was as ill as ever. I was feverish, nauseus, sore bones and throwing up. This wasn't like me....I certainly wasn't myself and I was feeling ill for quite some time. Mundane tasks such as quickly fetching something at the shops had me feeling feint. I was worried so I e-mailed my doctor also complaining about a ache that I had in my shoulder. I was asked to come in the next day. She instructed what I imagined. A bone scan, a series of blood tests and well as a CT scan.

I got the results today at my oncologist. My cancer margins are drastically up. The cancer is my liver has grown. The effects of my sore shoulder is quite possibly transferred pain. What was also noted was my extremely low white cell blood count. Due to my liver my body hasn't had the chance to heal itself properly hence the low blood count. I am supposed to start taking injections to get it all back up and running asap to prepare my body for the new chemo (here is hoping medical aid does not give me any s**t). The new Chemo I am supposed to go on is called Ixempra. It's designed at patients like me where red devil, paclitaxol etc etc (insert my list of never ending chemo here) has not worked. It's new in SA and my doctor has high hopes for it having some good effects. I hope and pray that this is my Silver bullet to kick cancers ass. This road has been so tough at times but I am determined as hell to cross the finishing line.

I promise to try and update soon...