Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, July 14, 2014

Making tough decisions is tough

When I was diagnosed with breast cancer I was a little bit excited about the opportunity for a boob job. Not that a double mastectomy is any cake walk, but I was trying to find the positive…if there is a positive in having breast cancer.  Then I found out I didn't need to do that for this type of cancer and was relieved I didn't have to go through that surgery. Its a big deal!

Several weeks later my oncotype came back, giving my my risk of recurrence which was somewhere around 25%…too high to ignore which is why together Dean and I opted for chemotherapy. Still, there is no real answer as to whether or not chemo will make a difference in my recurrence risk. It was a coin toss, really, and we chose to toss the coin. We chose to use whatever weapons were made available to us.

I have one more test left to come back, which is genetic testing. This is important not only for me, but for other members of my family - like my sisters and nieces - so they can make healthcare decisions for themselves. If my genetic testing comes back saying that I have the BRCA 1 or 2 gene, then I'll be having a mastectomy in September. If I don't have either of the genes I'll be having radiation starting sometime around the end of August.

And here is where my thought process has changed.

Chemo sucks. Some people think "Oh she only did four rounds, that's not so bad!" In reality, there are only four rounds of this combination given because it is HARD on your system, and then you need a full 21 days for your body to recover in between rounds. This has been really hard. I knew it would be hard. I "volunteered" for this because I don't ever want breast cancer again and Dean and I both wanted to do whatever we could to prevent just that.

Now I'm almost done. I have one round left. After each one, once I get to about day 10 I think, "There! That's done! I can survive 3, 2, 1 more of that." But really? Honestly? The depression that hits on about days 5-7, when I am so sick I am not functional at all, is just too much for me.  I cry. I cry a lot. I mostly cry alone in bed or in the shower so I don't bother Dean or freak out the kids. And I whine, probably a lot more than I realize. I cannot begin to explain to you what "bone pain" is like. It is like my bones are going to explode from the pressure inside and I would truly feel relief if they did just that. I can tell you I have never before felt "fatigue" to the level I feel after chemo. How do I describe the feeling that my arms and legs have been filled full of lead and it is all I can do to stand up from a chair and walk from the living room to the kitchen, and then think about going back. The damage done to my colon is likely permanent. As of right now the only way I can be more than 50 ft from a bathroom is if I haven't eaten for several hours. I could go on an outing and be fine without any problems, or I could need a bathroom every 15 minutes without enough time to walk 50 feet to get there.

I know that I could go 2, 5, 10, 20, 30 years and never develop breast cancer again, or I could hear those words "I'm sorry, you have breast cancer" just one year down the road. What if I developed a different type of breast cancer? (this happens quite frequently!) What if its not caught in time and it gets to my lymph nodes? That becomes a whole different type of situation.  I don't EVER want to do this again, and I don't ever want the risk of HAVING to do it again. I don't want to put my kids through it and I don't want to put Dean through it.

I don't know what to do. I think I want them off. Although a mastectomy does not change my survival rate, it does reduce my risk of recurrence. I want ZERO risk of recurrence but unfortunately that is just not possible. Even a mastectomy leaves some amount of breast tissue where cancer can develop. I hate not knowing what to do. Every time I ask God for clarity about something along this journey I find myself in some "gray area" group, where a coin toss is the only way to make the decision. I'm not seeing clear answers and I don't know that I trust myself to make the "right" decision. Maybe there isn't a RIGHT decision. Maybe there is only the right way for ME.


Unknown said...

I am so sorry that you have to go through this pain, both physical and mental. It sounds horrible and almost unbearable. I hope that they can help you find some relief for your colon as well. That doesn't sound like a livable situation. You don't know me, but I think about you a lot and pray for better days for you. Kelly Stoker

Betsy said...

Oh Leah -- going to try and put a message (it did not work earlier) -- my prayers for peace and for your results to come back "clear" of that bad gene. Sending hugs your way!

Imogen said...

:( Life is so unfair sometimes. You shouldn't be having to make these decisions at all. F**# cancer!

Tigger (aka Karyn) said...

Just to encourage you...chemo leaves it's mark, there's no escaping that, but most of the damage repairs itself in time. It might take a couple of years but one day you will realise that you feel a whole lot better and stuff is working that didn't quite work right for a long time. :)

With the mastectomy...that is a really personal decision. I had no choice. The cancer was in my lymph nodes so it was a damage control situation and then I found it had already travelled to my liver so taking off my other breast was of little value (other than helping me balance better LOL). Once you have had breast cancer you kind of view your breasts as potential enemies rather than the close friends of yesteryear. The inclination is to ditch them because the reality of BC is much worse than being boobless. A mastectomy has it's effects too. I have significant nerve pain and chest pain at times but it is bearable. They have to cut some crucial nerves in a mastectomy so sometimes you get after effects. I also have lymphoedema but that is because I have no lymph nodes but it does increase the possibility with a mastectomy. Pray about it and do whatever you feel is necessary. Cancer is evil and it doesn't play by any rules. Everything you can do to prevent it is likely to be a positive step. xxx

Relle said...

I'm so sorry you keep ending up in the grey area, not sure which way God would have you go. Like the footprints in the sand poem, i know He is CARRYING YOU and your family at the mement. I willbe praying that God gives you peace, comfort, wisdom and discerment for you and Dean as you make the next lot of decisions. HUGS

Christine said...

Oh Leah, my heart cries out for you. Such honesty in this post... you are such a strong woman. Big hugs.