Can you imagine if your doctor told you that you had a 19% chance of dying in the next 15 years? Well I can because that totally happened to me this week. Kind of felt like getting kicked in the stomach by a horse. I assumed by doing all of this stuff that I’d mostly take care of all my risk, but apparently that isn’t the case. I have a 42% chance of dying in the next 15 years if I don’t do chemo, which wasn’t actually something I was considering but hey, fun fact right?
The flip side is that I have an 81% chance of not dying in the next 15 years, but that’s a B- so that’s not the greatest stat I’ve ever heard. I know I shouldn’t focus on this, but you try having someone tell you that and not focus on it for at least a few days. Also this percentage isn’t like a general women with breast cancer thing, it’s based specifically on my age, my diagnosis, etc. It’s tailored to me. It’s my 19%.
Wednesday was a really hard day and so was yesterday and so is today. I’ll let you know when they get better.
Amazingly timed card from a friend (I got it Weds after I got home from the hospital)
The Weds morning appointment was with plastics to see how I’m healing. Like I said, I’m not where I should be with pain which sucks. The doctor tried to refer me to their pain specialists, but they can’t see me for a month. How useless is that??? They should either expand the department or get rid of it all together. Infuriating. Also half of my boob is really hard which is possibly causing the pain and they’re having me go back to PT to learn how to do a massage to hopefully help with that. It also means there’s some early tissue necrosis which is yet another scary thing. The doctor isn’t concerned at this point which is reassuring, but google that shit and you’ll see why it’s scary. Or don’t and save yourself the nightmares. It would just be nice to not have boulders popping up in my next uphill journey, it’s already tough enough. So I go back on Tuesday to see plastic surgery again and PT. I don’t have any infections which is great and they told me I can shave my armpit so that’s exciting to not be rocking the Jenna of the Jungle look anymore. There’s a thick scar in there from the biopsy so it’s a little tricky now.
Next up was the Oncology appointment. I met with my new oncologist who is great, A. and I both really like him. He communicates and takes ownership, two things sorely missing from my last one. I’m pretty pissed at my last oncologist actually and planning on writing a letter to his boss. He was supposed to write me a letter about the necessity for my fertility preservation due to the chemo needs (IVF) so I can apply for financial aid since insurance doesn’t cover it and he refused to do it and I hadn’t met my new oncologist so he couldn’t do it either until now, so basically just wasted weeks and it could be too late. He also referred me to Dana Farber and said that his staff would work to get them all my info, they didn’t get them any info at all. I’m so pissed because I have cancer, I shouldn’t have to deal with this petty bullshit. I understand that I switched oncologists, but it’s still in his team and it should be about what I need and not about his ego.
Anyways, like I said, A. and I really like the new oncologist. He immediately said he’d take over my pain management and switched up my meds and now I have someone to work with on it. He also got all of my files printed for me to take to Dana Farber which he didn’t have to do. His Fellow was even decent, she was good at explaining what their plan is and answering questions. The only thing I think she may have slipped up on was telling me my 19% thing, I could have done without that, but it was just a miscommunication. She thought I was questioning doing chemo when I was questioning if we could lessen the dosage since my scans are so good.
The recommendation is the standard triple negative recommendation: AC-taxol. Four doses of AC and then four doses of Taxol. I’d do them every other week on Tuesdays, so it’s over 16 weeks and I start on Sept 23rd which is so very soon. Poetically, my last dose would be the last week of the year. Thanks 2014, don’t let the door hit you on the ass on your way out. I have to get a shot the day after each chemo session to help with my white blood count and I’ll do that at the hospital in Randolph which is closer than Dartmouth. Chemo sessions are long. I start off by getting blood drawn and they run some tests on that and then I see my oncologist and he puts together a specific dosage for that chemo session and then I do a 2 or 4 hour (AC=2 and Taxol=4) session of getting hooked up to the poison and anti-nausea drugs. Apparently the younger you are, the more nausea issues you tend to have so they try and be aggressive with the anti-nausea drugs. The other crazy thing is that they’ve had this recommendation since August and my new oncologist was shocked my previous oncologist hadn’t taken me through it. Yet another confirmation I made the right decision voting him off of the island.
I’m headed to Dana Farber on Monday for my second opinion. It is my hope that they will have the same or similar recommendation because that will make things less complicated for me, however I am really looking forward to meeting someone who focuses on younger women and getting her point of view. The reassuring thing my new oncologist told me is that he wants to hear what she has to say and is totally open to adjusting things if their recommendation is different and something I want to pursue. Give this man a gold star already.
So no one has said “you may lose your hair” or “you’ll probably lose your hair”. Everyone has said “you will lose your hair” so that’s the situation. There are a lot of different chemos out there, so your friend who didn’t lose their hair probably had one of those. I’m going in with the knowledge that I’m going to lose my hair. I am not excited about it and I’m going to cry when it happens, but I accept it will happen. I do not want anyone to shave their head. I’ve told my Dad and A. this and I want all of you to hear this to. DO NOT SHAVE YOUR HEAD. It’s not going to make me feel better: it won’t give me my hair back and it will just make me feel more self conscious about how I look by seeing reminders of my bald situation. I’m planning on doing wigs, scarves, and hats. I do not see myself trying to own the whole bald thing. I’ll put together a registry on that once I sit down and figure out what I want. It’s one of those personal things where it obviously is a morale booster for some people going through this, but it’s just not for me. Keep your hair. Cherish it.
When doctors walk you through chemo they have to tell you every terrible thing that can happen to you, just like any other medical procedure. When I sat through the bad things video for lasik it made me want to run screaming from the room (I got it anyway), this was worse. Terrible things that probably won’t happen, but could happen: very difficult to treat leukemia and heart problems.
Much more probable bad things: exhaustion, chemo brain (loss of ability to multitask/short term memory), joint pain, muscle pain, and other delightful smaller issues. As if these things weren’t shitty enough, most of them take years to disappear, you don’t just bounce back from chemo.
I’ve never not wanted to do something more than I don’t want to do this. I do not consider this brave, brave would be taking the chance that I might be fine and not doing this. What I’m doing is the inevitable and it sucks and makes me feel powerless.
Hopefully I’ll be lucky and chemo won’t hit me really hard, but there’s no way of knowing until I do it. It’s easier for me to go in with low expectations because it’s just too hard to expect good things and get bad news at this point. It’s much better for me to expect bad things and then get good news or meet my expectations. Disappointment hits me really hard these days. I know I sound like Eeyore, but I’ve never been an optimist and getting cancer at 30 isn’t really the recipe to turn me into one.
If you’ve been thinking that you should write me an email, the week of the 22nd is the week to do it. I’m going to have time to kill while getting my treatment (hours) and there’s a good chance I’ll be out for the count for a few days that week and it would be lovely to get some long emails about what’s going on in non-cancer world. I’m a big fan of non-cancer world.
So important upcoming next steps: Monday I go to Dana Farber for my second opinion, Tuesday I go to “Chemo Class” with A. and Mom to learn all about chemo (should be super uplifting), 22nd I get my port put in (apparently sucking on jolly ranchers are the secret to not being totally disgusted when they clean it), 23rd I start chemo.
On a nicer note, I went to the Tunbridge Fair with Mom and saw the draft horse pulling which was cool. Tomorrow I’m going again with A., my cousin, and my Dad to see the oxen pulling and all the other fair creatures. Life Goes On.
Mom and some of the horses
Me with two new friends