This week has been great! I try to take advantage of the days when I feel good by getting out and about. I am trapped in the house during the week following chemo so I try to do as much as I possible can (including taking the odd nap here and there) on non-chemo weeks. I spent the week with my mom and got to see friends and family that I don't get to see when we head home for the weekend (we're usually only home for less than 48 hours). I also didn't have any doctor's appointments this week so I could leave the city without any worry. Keith met me on Friday to spend the weekend at home.
Saturday night was the benefit. What an incredible night! I saw people that I haven't seen since high school (8 years ago). I had family, friends, friends of friends, friends of family and everyone in between there. I didn't sit down once in the 5 hour duration of the dance and was constantly talking to someone. There were raffle prizes so generously donated, there was a silent auction for, again, generously donated prizes, a live band, and there was a 50/50 draw. There was so much support in one room. I got up for the last song of the night and sang beside my brother at the same mic. The song? 'With a little help from my friends' by Joe Cocker, I really appreciated the band learning it. I had my camera with me and as the song was ending, I took pictures of the crowd. It is something I will never forget.
I got up to thank everyone half way through the night and all of a sudden the words 'thank you' seemed insignificant, they seemed to lose all meaning. How do you thank so many people for coming together when you are in a situation where asking for help seems weak but when you need help more than ever before in your life? How do you thank people who are having babies, getting married, buying houses (all in a poor economy) for digging into their pockets to help you out when they have so many of their own costs? How do you say thank you to the girl who took so much time, energy, care, and love and put it into a night to honour you when you needed her the most? Julie, there are no words for how I felt last night. For everyone who came out and showed your support and generosity, please accept my sincere and genuine gratitude. Thank you for not making me have to face this alone.
This coming week I have a doctor's appointment on Tuesday with my plastic surgeon. He will tell me if I need another saline injection into my expander. Based on my expertise (or pure guessing), I think I need one more injection. I haven't had one in about a month and the thought of that huge needle going into my chest makes me want to throw up so let's move on. For those of you contemplating getting an expander, please know that the injections DO NOT HURT, I just have a severe phobia of needles and I react the same way to a needle in my chest as I do to a blood test.
I have to see my oncologist on Wednesday. She will fill me in on the new cocktail that will be administered for the next three treatments. I have to start taking the steroids the day before the next three chemo treatments instead of the day of. I'm a little nervous about #4 considering that I have read about 2 women who were allergic to Taxotere, one of which almost died. As I have said before, worrying about it isn't going to change anything, so I am trying to focus my energy in other places.
After my appointment, I have to get blood drawn to make sure my body is ready for another beating. Thursday is free from appointments and Friday is my next treatment. Keith has 4 days off over the long weekend and they will be spent inside with me, trying to take away the pain, nausea, and overall discomfort of chemo.
At the benefit, I was thinking 'all these people are here tonight because I have cancer.' I often think about how much my life has changed over the past 4 and a half months, how little I knew about cancer and cancer treatment. I think about how much my life has changed physically but also emotionally (which I was in no way prepared for) and I wish there had been some manual to explain some of the important steps to take prior to starting treatment (including surgery).
I have found that people have given me gifts by using their strengths and talents to the best of their ability. I have had people use humour to brighten my day, I have had friends cook me meals, where as others put together a box of 'treasures' that will help me during 'tough days' and 'days when I need a treat' and 'days when I need to vent' (thanks Liz), and others use their party planning skills to throw a benefit in my honour (thanks Julie). One of my strengths right now is having a blog at my disposal and although I can't help others the way I hopefully can once treatment is over, I thought I would include some items that I would have found helpful prior to surgery and chemo. Some of these are things that no doctor told me and I had to learn on my own while others were posted on websites and in books. I hope these tips make it even a little easier to deal with the life long side effects of cancer.
Losing a breast takes some time to absorb, accept and then cope with. I'm not sure if there was anything that could have prepared me. I think I was just so excited to have the cancer cut out of my body that I didn't care what I looked like after. I think there should be more psychological 'help' prior to surgery. I also don't think I was warned about the scarring; it doesn't really bother me but there is a lot of it and I could see how someone could really be affected by it.
You lose all sensation in your breasts. Both the reconstructed side and the expander side are numb. I was not prepared for that considering I had only ever had surgery on my tonsils prior to the mastectomy. Again, I didn't feel like I was warned. I was ready for the reconstruction but not ready for the side effects of it.
Go to the dentist and get a check-up pre-chemo. You cannot have work done on your teeth during chemo because of the risk of infection. Make sure you tell your dentist that you are about to start treatment and he will give you tips on brushing, as well as some sample-sized alcohol free mouth wash, and other helpful tools that are required during treatment.
Get a pap test. Chemo affects all of your cells so if there is a change in your vaginal cells during chemo, it is best to have a baseline to refer back to if there is something wrong.
Keith's aunt said she heard chemo being described as having an IV drip of concrete going through your body and that is pretty accurate. So, drink lots and lots of water even when you think you're going to throw up, try to get it into you so you can get the chemo out of you. I personally find drinking it with a straw makes it easier.
You lose the hair in your nose too. Be prepared to have a runny nose for the duration of your chemo.
There is a misconception that you lose weight while doing chemo. Between the cocktail, the steroids, the willingness to eat anything that doesn't make you want to throw up (including Kraft Dinner, Doritos, potatoes, and any other kind of carb.) and the lack of exercise; the average woman going through chemo for breast cancer gains between 10-35lbs. Isn't that an added little bonus?
Chemo kicks you into early menopause and you may stay there for the rest of your life. If you are of reproductive age, you may want to visit a fertility doctor. I did and was given some options. Unfortunately, fertility treatments for women going through chemo seems to be highly understudied and the thought of pumping hormones into my body that already had a hormone based cancer in it just wasn't an option for Keith or me. They also gave us an option to give me an injection that was supposed to shut down my ovaries before chemo could damage them. After researching that option, we decided that there weren't enough studies done that showed the safety or the efficiency of that drug either. We decided that we knew the side effects of chemo and the potential of not being able to have a baby but the potential side effects of the fertility drugs were too vast and unknown for us. I am still glad we went and discussedthe options. If anything, ask as many questions as you can. I felt like if we hadn't asked the questions, we may have been talked into or led down a path that we are now glad we didn't go down.
I think the number one thing that I wish I had been prepared for is the psychological aspect to cancer that you rarely hear about. The amount of energy and emotion that is required when you have cancer, the amount of time that is spent thinking about the future and what it'll bring as well as thinking about the past and the potential regrets or changes that you may have made knowing that cancer was in your future is immense. There is a lot of envy towards other people who don't have cancer and a lot of fear that you'll get it again. I had no idea that an hour couldn't go by without thinking about cancer (either by rubbing your bald head or feeling the nerve endings in your numb breast). I'm so thankful that my medical team have treated the cancer but I really believe that there should be someone who treats the patient on your cancer treatment team.
These are all things that other cancer patients shared with me or that I had to find through my own research. I hope this helps a little with both understanding what cancer patients are faced with as well as what needs to be done prior to beginning treatment.