Today was chemo treatment number 7, which means that I only have 1 more to go! I’ll be so glad to be done and also be able to get rid of my PICC line – it’ll be nice to shower or bathe (including getting in the tub with E) without wearing a waterproof sleeve. And one of these days I’ll have more hair than my husband and son :-).
Wow – apparently this is post number 100!
Always a difficult question after any loss.
I thought about this after one of my previous posts – 3 pregnancies and 2 live births, but that’s not quite true. My first pregnancy was actually a chemical pregnancy. It was over before it started, I actually haven’t ever told anyone including my husband. I saw those two lines on the pregnancy test but felt cramping like my period, so I guess I wanted reassurance from my Dr before I told my husband. I saw her about 5 days later and the in office test was negative, she explained it was common and that was it – I started bleeding that night. I had never even know something like a chemical pregnancy existed – I was aware of miscarriage in the way that it existed but no more than that. Like seeing a unicorn – you never believe it will happen to you until it does happen. I was lucky we hadn’t been trying for that long (I think it had been 4 months) and after reading a bit I realized how common miscarriage actually was and didn’t really think much more about it. Although the next time I got that positive test I told my husband immediately :-). So I have never really counted the chemical as a pregnancy and I guess this varies by person. If it had happened after M I might count it – but I really didn’t know what I was losing. But I have to admit when we learned about Ava’s condition I wondered why I hadn’t miscarried her. I’m still amazed that her heartbeat was always regular and within normal limits with only half a heart. She was so strong and I think that’s one reason I wish that there was a better way to acknowledge all types of loses.
But back to my original question. I find I respond differently depending on the person asking the question. At first I was much more open but after a few horrified stares or people trying to say they understand I became much more choosy about who I told.
I can’t believe my baby is off to kindergarten in the Fall. I filled out all the paperwork and turned it in last Friday – and then had a cry in the car.
Where we live we had a choice of 2 publicly funded boards (public or catholic) and private schools – although you don’t have to be catholic to attend either publicly funded board. We really can’t afford private school, so we chose the closest catholic school – we had heard good things about it and it’s within waking distance, unlike the public school which would involve driving or busing. We also did some research on-line on school rankings and it’s in the top third for schools in our area. But honestly, the word of mouth and the fact that’s it’s so close where the biggest factors – plus we didn’t really want to research too much as these types of things are dependent on so many factors.
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.