Today's post is the beginning of a new series on the ashley kicking cancer blog. I will be featuring some very special people I have met along this crazy year of cancer. Each person's story is unique and I feel it is important to share them. You never know whose experience may touch and help someone else.
First interview of the year is a Q & A with my amazing cancer buddy Kristy McDonnell... She's one tough chick with a beautiful spirit!
NAME: Kristy McDonnell
TYPE OF CANCER / OFFICIAL DIAGNOSIS: Grade 3 Oligoastrocytoma – anaplastic – Primary (Brain Tumour)
CURRENT AGE: 27
AGE AT DIAGNOSIS: 26
HOMETOWN: Gibsons, Sunshine Coast
OCCUPATION: Now I am a stay at home mum.
HOW DID YOU FIND OUT YOU WERE SICK? WHAT LED UP TO YOUR DIAGNOSIS?
I found out I was sick after a grand maul seizure on November 30, 2011. I wasn’t diagnosed that I had a brain tumour until the next day and it took months to find out my final diagnosis. I didn’t know I was sick until the seizure but looking back there were definitely lots of signs. I just didn’t put them all together as everything was mild. Nothing that I thought was out of the ordinary. Days before my seizure I was experiencing nausea and I thought oops… I’m pregnant. lol.
IS THERE CANCER IN YOUR FAMILY HISTORY? There is cancer in my family, mostly on my mother’s side. Bladder, Skin, and Breast Cancer.
WHAT WERE YOUR FIRST THOUGHTS WHEN YOU WERE DIAGNOSED? To be honest it really was a blur. It’s didn’t really sink in until March when I was sent to the BCCA for my ‘official diagnosis’
HOW DID YOUR FAMILY REACT? Worse than me ha-ha. Although my family is spread out, there is a lot of love, and they all took it VERY hard. Everyone reacted differently. Some were angry, scarred, and sad. Some were very positive and some wanted to just bury their heads in the sand and ignore the severity. Everyone had his or her own reactions as far as I could tell and it took each person a different amount of time to process the whole cancer thing.
HOW DID YOUR FRIENDS REACT? Most friends didn’t know what to say at first. People don’t usually know what to say to someone who has cancer and I think out of fear, they just don’t say anything. Most stay away at first but usually come around. In my case my friends have been very positive about my condition, but on occasion they do need some comforting themselves. Same with my family.
HOW LONG DO YOU THINK CANCER HAD BEEN IN YOUR BODY? Around 20 years. (The doctors say less, but I know my body and my mum defiantly agrees with ME on that one)
ARE THERE ANY SPECIFIC CHALLENGES YOU BELIEVE DIFFERENTIATES YOUNG ADULTS COPING WITH CANCER AS OPPOSED TO PEOPLE WHO ARE DIAGNOSED LATER IN LIFE? I don’t know if it’s different. I could only guess that maybe if you were diagnosed at a later age you could look at it and say at least I lived a good long life. On the flip side I look at young babies and children with cancer or those who have not survived it and I feel sad that they don’t get to enjoy life the same way I have. I feel sad that they can’t just be kids or some don’t get to live to be 27 like me.
DID YOU CONTINUE TO WORK AFTER YOUR DIAGNOSIS? I did not continue to work after surgery.
DID YOU HAVE SURGERY? IF SO, WHAT DID IT CONSIST OF? I did have surgery. It was a four-hour awake craniotomy. They resected what part of the tumour they could. By electing to do the surgery awake they were able to probe and map out my brain so they knew what they could resect and what they would have to leave. Part of my tumour was in my speech centre so they had me talking and telling stories and counting during surgery and when I was unable to speak they knew they had to leave that part. They were able to remove approximately 70- 80 % of it.
WHAT HAS YOUR TREATMENT CONSISTED OF? Besides surgery, I started with a pill form of chemo called Temozolomide for six weeks along with 30 days of radiation over that six weeks. After a one month break, I started an adjuvant cycle of a higher dose of Chemo for six months. Each month I took my Temozolomide for 5 days and then 23 off. I am currently on a break from Chemo but I do still have cancer.
WHAT HAVE BEEN THE MOST DIFFICULT SIDE EFFECTS YOU HAVE HAD TO COPE BECAUSE OF YOUR TREATMENT? To start with the seizures were the scariest. Once my medication was under control, the tiredness was the worst. I had to be on a steroid called Dexamethasone to keep the swelling down in my brain, and it made me so moody and I gained 20 pounds in 6 weeks. I always felt like I was starving. People describe it as ravenous. My chemo didn’t make me loose my hair, but radiation did. Knowing you are going to loose your hair and actually loosing it hit me harder than I thought.
IF YOU HAD TO DO IT ALL OVER AGAIN, WOULD YOU HAVE CHANGED ANYTHING? I really don’t think so. It all just happened so fast that I don’t think there was another option. Because I had to be on anti-seizure medication right away, there was no chance for me to even consider harvesting eggs if we had decided we wanted to grow our family.
WHAT HAS BEEN THE MOST DIFFICULT PART ABOUT THE CHALLENGE OF COPING WITH CANCER? That’s a tricky one. I don’t feel like I have cancer. I never did. I guess not being able to drive due to my seizure disorder has been a big challenge especially with a young son. I guess it’s kind of the unknown of what could come. I have always said that the only difference between me and someone who doesn’t have cancer, is that I potentially know what might get me.
HAVE YOU STRUGGLED WITH SLEEP OR FOUND IT DIFFICULT TO FULLY RELAX? Not too much really. I usually sleep like a rock, and I am kept so busy that there really isn’t that much time to relax. I have my moments like everyone else, but I try not to worry about things of which I can’t control.
HOW DO YOU HANDLE THE STRESS OF FOLLOW-UP APPOINTMENTS AND/OR SCANS? Honestly, it depends on the day. Not necessarily even if it’s an important appointment. I pretty much breezed through the majority of my treatment thankfully, so that was good. If it’s my time of the month that can sometimes make a difference. Usually I go in and everyone is just so down and I’ll be in there just jammin’ to my music or reading a book laughing my ass off.
WHAT HAS BEEN THE MOST HELPFUL FORM OF SUPPORT YOU HAVE RECEIVED? Emotional support has really been key for me. I’m the type of person who needs to vent and then I feel better. The only thing is the person on the other end can only take so much too, so I did have to share my vents with other people. Family’s help with my son too. My step-mom watched my son every day while I was in hospital and then again while I was going into Vancouver for radiation. Financial support as well. I mean anything that anyone did for us helped hugely appreciated. Another thing that was really key and most people don’t realize is that the ‘care giver’ needs breaks too, so my mum and sister and niece coming to visit me a so Seth could go on a ‘cancer-free’ fishing or hunting trip was so appreciated as well.
Things people brought me during hospital stays and treatment were also really helpful. Some of the things I felt really helpful and sweet were pictures of my family, notebooks and pens an coloured markers. My friends brought my a Christmas tree and decorated it or me. They put decals on the windows. During treatment my family made me a very special blanket with pictures if me and my son and the border was purple, my favourite colour. Also things like socks, toiletries, hats, sweaters, food other than hospital food was nice too. I loved having my family coming to visit me. I was lucky my partner was there every day and the rest of my immediate family took turns visiting and they would bring my son to visit every couple of days. Other things I think would be helpful would be an iPad or books and magazines, some of what i did have. My auntie brought me a travel mug that I could put water in and a straw through the lid. I'm pretty sure I was sent a stuffy too. Oh yes and a pillow from home. Obviously this depends on how long you are in hospital for. I was in for two weeks so it was nice to have some distractions.
SOMETIMES PEOPLE CAN UNINTENTIONALLY SAY THE WRONG THING. HAVE YOU EXPERIENCED THIS? IF SO, HOW DID YOU HANDLE IT? Haha, ya people sometimes do say funny things. One guy asked me one day how my brain was. My first reaction was to ask him the same question. Another persons said something like I’m sorry you have cancer. I just laugh it off. I personally think it’s better to say something than not to say anything, and turn the other way when you see me at the store or something. To be honest I don’t even know what to say to my fellow cancer buddies. I always say how good they look… It just slides off the tongue so nicely.
HAVE YOU LEARNED ANY BIG LESSONS ALONG THIS JOURNEY? Absolutely!! Life is so precious, don’t take anything for granted and enjoy every second because it can be gone in a flash. Also weed out negative people and surround yourself with positive people who truly care.
WHAT MAKES YOU FEEL BETTER, GIVES YOU JOY AND HOPE? My family, my golf my will to live.
HAVE YOU ATTENDED ANY SUPPORT GROUPS? WHY OR WHY NOT? No I haven’t. I journal and I blog, and for me right now that’s all I need. I get my support from my friends and family. I’m not opposed to it. People have recommended it though. Besides I’m not taking a day away from my son to go to a brain tumour support group. I do here there may be one starting on the coast soon though ;)
HAVE YOU PARTICIPATED IN ANY ALTERNATE THERAPIES OR METHODS BENEFITING YOUR OVERALL WELL-BEING? No alternate therapy yet, but Church has helped me a lot.
HAVE YOU CHANGED ANYTHING IN YOUR LIFESTYLE SINCE BEING DIAGNOSED? Yes, I definitely eat more chocolate, but I switched to dark. I don’t drink or smoke any more so that’s a good thing.
ANY TIPS FOR OTHER SURVIVORS? Stay as positive as possible!!! Have goals. Focus on the positive and not the negative stuff.
ANY TIPS FOR THE PRIMARY CARETAKERS? Yes TAKE CARE OF YOURSELVES. You are no help to your ‘patient’ if you don’t take breaks. Don’t get ‘caregiver burnout’, and if you don’t know what that is LOOK IT UP!!! It’s a real thing.
ANY TIPS FOR FAMILY AND FRIENDS OF CANCER SURVIVORS? Let us talk when we need too, let us cry, vent, scream, what ever, but actually listen. Make yourselves available to us, and not like a full time job but don’t ignore the situation. It can be difficult to ask for help with things that we are used to doing ourselves. Please don’t tell us how we should feel, you are just opening a can of worms there.
YOUR MOTTO / MANTRA OR FAVE SAYING: I have a few but probably most known for making up words like... ‘I’m feeling seizure-ish’ or ‘I’m going to have a jammer'. I have a fellow ‘crainy’ friend.
“never, never, never give up” – Winston Churchill
“Learn from yesterday, Live for today, Hope for tomorrow – Einstein
YOUR WEBSITE WHERE READERS CAN FOLLOW YOUR STORY: www.kristykickingass.blogspot.ca