Yesterday was my second treatment with Taxol, so only two more treatments to go and that will hopefully end my acquaintance with cancer. I have more surgery in the future but they will likely be the easy part after all this.
So lets talk about side effects – I still think I prefer the pain of the Taxol to the nausea of the ‘Red Devil’ (Adriamycin), but I’ve only experienced one full round of the Taxol and the effects are cumulative, so we shall see. With the steroids and anti-histamines for the Taxol, other than not sleeping but feeling tired, the first 24 hours after treatment I feel pretty good. During that time and during treatment my hands tend to feel like I’ve been doing a lot of exercise or it’s the middle of summer – you know when your hands feel swollen. But then the pain and neutopathy starts – last time my hands felt like they were on fire and it hurt to bend my fingers, the pain in my hands abated after a few days but then joint pain in the rest of my body started. I wasn’t complete back to normal before this round, but the nurse said the symptoms might not be as bad this time – here’s to hoping for that! I also found that my skin is now super dry – it’s always bad in the winter but now if I don’t moisturize regularly my skin actually starts to split and bleed. And I still get heartburn on this chemo, but fortunately not the crippling nausea. It doesn’t help that the kids are again sick with colds – M has a nasty cough and has had some really disgusting sneezes (instead of breathing fire he was sneezing out impressive lines of snot) but E actually seems pretty good just a few small coughs. Hopefully the Neulasta (a shot to help boost your immune system) works and I don’t catch anything – as anyone with small children knows with them sneezing and coughing in your face it’s pretty hard to avoid the germs.
It’s hard to believe that it’s been 5 years since my sister died. Some days it feels like only yesterday but other days it still seems so fresh. Yesterday was a hard day and I really wanted to pick up the phone and talk to her – she was always the first person I told anything to and she was always willing to listen. So because I’m undergoing treatment and wanted to write this out at some point this seems like a good time to write everything out in terms of my BRCA journey – a lot of this has been covered in other posts but this is for me.
I found out I had the mutation 2 days after my sister died of breast cancer – she died only 6 months after diagnosis and undergoing chemo and radiation treatment. So honestly, for me, unlike many others the news actually wasn’t devastating – in fact, I mostly felt sorry for the poor genetic counsellor whom I had never met. I went to the appointment with my mom and dad and my poor mom freaked when she heard the news – she had just lost one daughter and was being told that her only other child also had this mutation was a little much too soon. Plus it didn’t help that I had previously met with a genetic counsellor but didn’t qualify for testing – even though all the female relatives on my dad’s side (my grandmother and aunt) had breast cancer and died. My dad could have been tested but never got around to it until my sister was diagnosed and he tested positive as well.
My story, in terms of the BRCA-1 mutation, starts in 2011 when my Dr. asked about my family history of cancer. My maternal grandmother had breast cancer go into remission and then had a recurrence and died from complications when I was about 12 years old, so I don’t really remember much. My maternal aunt died from breast cancer when she was forty – diagnosed when she was 36, went into remission and by the time it was discovered again it had spread to most of her body. Based on this history my Dr. suggested meeting with a genetic counselor. I met with the counselor in 2011 with my mother as she knew her family history (I wasn’t aware of the cancer history in her extended family) and the dates for my dad’s side of the family. Because there weren’t enough female relative on my dad’s side I didn’t qualify for testing – but go figure my mom did for another genetic mutation (not BRCA). So I didn’t give it another thought – but fast forward to July 2012 – my sister calls to let us know she has breast cancer at the ripe old age of 32. When I heard the news I was upset – but it didn’t seem too bad, most breast cancers are very treatable. However, when we arrived she told us that it was inflammatory breast cancer – which is rare and usually not diagnosed until at stage III or IV. For Nicole it was already at stage IV and was in her lungs, bones, brain and liver. Treatment started immediately – I won’t talk about that here, but suffice it to say that it was extremely aggressive and she died 6 months after her diagnosis. During her treatment she tested positive for a BRCA-1 mutation, they tested my dad (he was positive) and then I received my positive test result.
After seeing what Nicole went through I knew that a mastectomy was in my future, but the timing was up in the air. If my mom had had her way I would have been in the operating room as soon as we got the positive test result. But I had just gotten married less than 2 weeks before this result, my husband wasn’t there (he needed to return home for work and his mom was in the hospital), and this was definitely a decision he needed to be part of. So we waited until we could get in to meet with the Dr. at the high risk breast cancer clinic in Ottawa. My sister died in early January and this meeting was in the spring. Now remember this is a prophylactic surgery so they have no rush to get it done – I’m not sure what would have happened if they could have done it right away. Anyways based on that conversation and talking it over with my husband we decided that I would put my name forward for surgery in the Fall/Winter and we would try for a baby during that time if I got pregnant great but if not I would have the surgery – with a mammogram and breast MRI during that time. Of course, when they called with the surgery date I was about 8 weeks pregnant so no surgery. And since that time I’ve pretty much been pregnant or breastfeeding – so no surgery and no imaging. Although I did go to the breast clinic once a year for a follow up, including a manual exam. Three pregnancies and 2 live births later (and about 4 years after first learning I was BRCA-1 positive) I was ready for the mastectomy. But I had missed my window – no longer a prophylactic procedure the mastectomy was now a needed procedure. So here we are 5 years later and my parents had to witness their other daughter celebrate Christmas bald. Fortunately my prognosis is much better than my sister’s and if everything goes according to plan I should be done with cancer on Valentine’s Day.
Yesterday I had my fifth treatment, this meant a switch from the adriamycin and cytoxan to the taxol. So far I’m ‘enjoying’ this drug a lot more. The nausea is negligible, which I found so hard to deal with during the first 4 treatments. Some things I’ve noticed so far:
- The treatment itself is MUCH longer, with the first 4 treatments I was usually in the treatment chair for about an hour, yesterday the pre-meds themselves took almost an hour! Apparently this drug can cause allergic reactions, so I took a benadryl, they injected randitine (stops antihistamine production in the stomach) and an IV drip of dexamethasone (a steroid). The actual chemo drug is through the IV over 3 hours. So you’re there for about 4 hours and that’s when everything goes well.
- During the actual treatment the only thing I noticed was my hands felt swollen and I was actually hungry – likely side effects of the steroid.
- I spent most of the day feeling tired, but then couldn’t actually sleep last night – it was around 3 when I fell asleep and then M was waking me up around 6:30. Hopefully sleep will be better tonight without the steroid coursing through my body.
I’m keeping my fingers crossed that I don’t experience some of the potential side effects, but not everyone experiences them and as always some of them are contradictory so we’ll see what I end up with. Plus the effects are cumulative so I might not really experience anything for a few rounds.
Last month the breast cancer support group I had joined finished the structured meetings. I found the whole thing very helpful, it probably helped that we were all relatively young for a breast cancer diagnosis. But one thing that came out of the meetings is that I realized how angry and guilty I feel about my diagnosis. It’s one of those things that intellectually you know is silly but you can’t help feeling that way.
I’m angry that I had the chance to avoid this altogether – I mean I was actually scheduled for a prophylactic mastectomy almost 4 years ago and cancelled it because I was pregnant with M and since then I’ve been pregnant, trying to get pregnant or breastfeeding. Also, the surgeon thought the cancer had only been growing for a few months so I keep thinking I almost made it. I mean a cancer diagnosis is a surprise for almost everyone but I actually had a way to avoid it, but missed my window. I guess the upside of the whole thing is that without knowing about the mutation I wouldn’t even qualify for screening yet, in Ontario screening doesn’t start until you’re 50 years old, and the cancer would have been much more advanced by the time it was discovered. But I’m finding it very hard to get over the thought that I almost didn’t ever have to worry or deal with a cancer diagnosis.
I feel guilty because my prognosis is actually pretty good – with chemo (and the double mastectomy) there is about a 9% chance of a recurrence. My sister never had a chance, but I do, and I hate that my family had to deal with this. Particularly my husband and parents. Fortunately the kids are too young to really understand what’s happening. M knows that I’m sick for a few days and then better. I’m not sure what E thinks, she’s definitely a daddy’s girl, but the other day she cried when I held her and seems to want people other than me. It’s hard not being able to do and be all your kids need. My husband currently has a lot of stress at work – his company isn’t doing week and are talking about potential layoffs. He is currently the only income earner, not to mention the insurance, as I only worked about 2 weeks before taking a leave of absence so I’m getting nothing. So with the treatment for a few days he is working and dealing with the kids basically by himself. Plus he’s worried about me and there is nothing I can do. I just wish that I could take away his stress. But I think I feel the worst for my parents – they watched one daughter die and then their second be diagnosed with the same disease. I haven’t really even spoken with my dad since my diagnosis – he took my sister’s death hard, the mutation comes from him and I know he’s struggling. My mom is trying so hard to help, I mean she was driving me to work every day while I was working because she didn’t want me on the bus and this took over 3 hours out of her day. The guilt comes from knowing I could have saved everyone all this stress and worry if I had just had the mastectomy right away.
And all this leads to how I feel. I think I could have avoided all this – BUT THEN I WOULDN’T HAVE M, E and Ava. They are so much a part of me that I can’t imagine who I would be without them, so I end up running in circles – I should have had the mastectomy sooner but then I wouldn’t have my kids. This means I’m a big pile of twisted emotions and I find it hard to actually pull out how I truly feel. Everything is so intertwined that I’m finding it hard to even describe things. I’m angry (could have prevented this, didn’t qualify for testing until my sister died), guilty (could have prevented this – good prognosis after everyone else in my family diagnosed with breast cancer has died), grateful (cancer detected early with a good prognosis), sad (lost time with my kids, E seeming to not want her mommy), sick (chemo makes me ill for almost a week after), disappointed (I feel like I’m missing out on things – we aren’t really doing things as I don’t want to catch anything with my weakened immune system), and probably a bunch more things. If you’ve read all this thank you, I’m sure it’s a bit muddled but I’m not going to go over it, this is how I feel and I’m afraid that I’ll make too many changes if I try to make it better.
Well things have been busy – but they might be slowing down. I have managed to get a leave of absence from work. It’s such a relief to know that I will have a job to go to when my treatment is finished. But again like with my babies I’m off with no financial help – we are so lucky that my husband has a good job with decent medical coverage. One of the drugs we need to purchase ourselves is over $2,500 a shot and I need it 8 times. So life would have been more difficult – especially with Christmas coming. But I know I’m going back to a job that I think I’ll really enjoy and most people seemed nice – so this is a huge relief.
Yesterday was treatment number 3 of the ‘red devil’. I hate this stuff, for me the nausea and heartburn are awful. No vomiting but sometimes I’ve wondered if I would feel better if I did. This treatment we are trying something different – the same drugs but home hydration, which means that I get a bag of saline a day. So far I seem to be feeling better with the extra liquids, it takes some of the burden off of me to make sure I’m drinking enough, which due to the drowsiness and nausea I know I haven’t been doing. Also there is some relief in knowing I don’t have to worry about missing work. But only one more treatment before Christmas and the New Year. Which reminds me that I still have some shopping to get done, cookies to make and Santa photos to get done.
So I’ve survived my first round of chemo without to many side effects. Yesterday was the meeting with my dr before the next round on Wens. She prescribed some more anti-nausea meds which hopefully will cut out more nausea and a precautionary antibiotic. You could tell she didn’t want to add the antibiotic but my cyst flared up during the first round so she’s hoping that taking them before a flare up might prevent it from happening – but she didn’t seem too confidant, which means I might have another visit with the surgeon in the future to see what can be done. And I’ve started to lose my hair. It’s a weird feeling you can feel the roots dying, not really painful but very odd – it does mean my hair looks and feels kinda gross.
The kids have been in full time daycare for almost 2 weeks and seem to be enjoying themselves. M was having fun with the snow – he loves his little shovel, I watched him shovel our front lawn for a half hour and then start crying when it was time to come in for dinner.
I’ve started working, I’m not used to getting up and actually having to be somewhere by a certain time. The kids also don’t like getting up so early, M keeps wondering where the sun has gone.
Tomorrow is my second round of chemo, and the first when working so it should be interesting.
So I’m going to share some of my side effects from the chemo.
- Nausea: this is the big one for me, no vomiting but it’s been close. I’m on two prescriptions for the day and the 2 days following treatment, and can take gravol as needed.
- Heartburn: the only other time I’ve had heartburn was when I was pregnant – I’ve been sleeping on the couch because I can be upright.
- Constipation: I finally pooped today – I hadn’t pooped since chemo on Wednesday. I guess next round I will start the laxatives early.
- Nosebleeds: just small ones that end very quickly, but still annoying.
- Tired: I have actually had a nap most days, but fortunately I seem to be sleeping through the night.
- PICC line: is itchy, although often I forget it’s there. But it makes life hard as it can’t get wet.
- Dry skin: the skin on my hands is usually dry but chemo has kicked it up a notch.
My mom took the kids for the weekend, it’s been great as I’ve been able to lay on the couch and not have someone asking for something.
I also have to write a letter to my new employer about my need for time off for appointments as soon as I start. I’m so happy to have a job, particularly one that should be interesting, but so nervous about what will happen between that and my treatment.