Monday, April 22, 2013

Radiation so far

I'm on my 3rd week of radiation. The first Monday I went was just another planning day and they did x-rays and set me up like I was getting treatment. It was really emotional for me for some reason. It took all I had to make it through without crying on the table. But once I got to my car I had a huge breakdown. I think its just emotional to start a new treatment and I made a connection with that particular parking garage and going to see Mackenzie in the NICU everyday (which you can see from the garage). When I was walking from my car to treatment that day the NICU was the first thing I noticed. I felt like I was back 3 years ago. When we brought Mackenzie home from the NICU I was SO happy to never have to look at those halls again but here I am. Walking the same halls for the THIRD time now. And none of them for happy reasons.

I think radiation is also a little more emotional because its a DAILY reminder that I have cancer. During my 6 week treatment hiatus between chemo and radiation I felt like a normal person (minus being bald). But now I have to stop my day and remember that I have cancer. Maybe it will be a good thing. Making me face reality and not be able to live in denial. I think I live in a happy place in between reality and the past.

Tuesday of that week I started to actually get radiation. Its really easy treatment. You just lay on a table. The nurses tug the sheet under you this way or that way to match up my tattoos and then they start. The radiation hits me in 3 different places but the whole treatment, including set up, usually takes about 2.5 Taylor Swift songs. The day I thought about timing it in my head they started her cd from the beginning as I was getting on the table so that's the only reference I have! I think the fatigue is starting to set in. But I'm also sick so I'm not sure if its being sick or the radiation. Probably both.

I finally have a set schedule. 12:15 every day. I was hoping to go before work but the only time they could offer was 8:45 am and that wasn't going to work.

Sign in the waiting room at radiation.
Besides that everything has been going great. I feel great. My hair is SLOWLY growing back. But you can actually see it now which is awesome. Except that its starting to look dark which makes me nervous! I will be so sad if my red hair doesn't come back.

Peach Fuzz!!

Yesterday some daycare friends (girls from ballet class and their moms) and Mackenzie and I went to see a Cinderella Children's Ballet. Mackenzie loved it! She thinks she is a prima ballerina all ready. Afterwards we went to dinner in Reston Town Center at Clydes with our friends and George came and met us with some other dads. Mackenzie had some much fun with her friends and made a new friend...a Great Pyrenees! 

Lastly, my Susan G Komen walk team is getting close to its fundraising goal. And I am $49 away from my 2nd goal of $500! I started at $200 but upped it after I got $201. My team is also doing a 50/50 raffle if anyone is interested in buying tickets. 1 ticket for $2 of 3 tickets for $5. Click this link to donate to my page!! Thanks again for your continued support! 

Thursday, April 4, 2013


First I'll start with my physical therapy appointment before I get into all the goods about when I start radiation.

I was really happy with how it went today. I was afraid she was going to say that I for sure have lymphadema and there was nothing they could mind always goes to the worst possible thing first of course. But the physical therapist said I most likely have cording (click for definition). After talking to her and seeing the definition I'm confident that is what it is. Sometimes I forget that my body has been through A LOT and that I shouldn't expect it to just do whatever I want it to do without odd sensations. I'm finally getting feeling back in my upper right arm and on the side where my surgery was which is great. The physical therapist told me that this is a "new normal" but about a year after surgery I should be back to my "old normal" which means how I felt before surgery. And although the mastectomy sounds like the most complicated surgery, the axillary lymph node dissection is actually more complex because they have to removed nodes but also move around nerves and lots of other insides and rearrange things.

So on to radiation. I got the call today right before lunch that they were ready to start my radiation. She asked if I could come in tomorrow night. I said night? She said yes around 745. Umm no thank you. First you're either assuming that I don't have plans or that I will cancel them for this. And I do and I won't! I was told that the first session is like an hour and its more like a mapping session with an x-ray and that radiation would start the next day...unless it was on Friday. Then it would start on Monday.

And of course before I talked to the lady I was adamant about having the earliest appointment and I wouldn't take no for an answer. But after talking to her I realized that 65 other people (her number not mine) need radiation everyday too. So for the first 2ish weeks I will be going 7 or 8pm and then I will work my way down the time scale. I'm also reconsidering going in the middle of the day. If I can't have the first couple appointments in the day then its not really helpful. Going at 845am would mean that I would have to use like 1.5 hours of leave EVERYDAY. We'll see. I don't have to figure out all 6 weeks of it yet.

I'm feeling a little nervous about radiation. More than I thought I would. Its just that there's so much unknown. Just like chemo, they can tell you what side effects you could have but they can't tell you what you will have. Except fatigue. Everyone is lucky enough to get that.

But I'm glad that I went to physical therapy when I did because I know that radiation can be so bad for your skin and it will set me back a little bit in terms of my range of motion in my arm. So now I have exercises to do everyday, even during radiation, to help keep my range of motion the same.

Oh and I read the article in Time that I mentioned in my last blog. It was so interesting. And hopeful. Stand Up To Cancer is funding some great clinical trials that are changing lives everyday. Obviously not every thing they find out about cancer is good news but if there is ANY good news that's comes from the research then its all worth it to me.

Monday, April 1, 2013

Happy Easter!

It finally hit me the weekend before last that I don't have chemo anymore!! I know I'm a little late but that was 3 weeks since chemo so that Thursday would have been chemo day. But it wasn't! Now its been 4+ weeks without chemo and I'm loving it!

I went to my oncologist last week and she told me to come back in 6 months! I think I'm recovering pretty good from chemo. I still have a little bit of foot/(c)ankle swelling but other than that I feel great. I told her I have a little pain in my arm so she told me to get checked for lymphadema. I should have called physical therapy weeks ago but I keep putting it off. It can't hurt to go to get tips to prevent lymphadema. So this Thursday I go to the physical therapist. The pain I was feeling at my oncologists office went away but my arm is still feeling sore.

We also talked about tamoxifen which is the drug I will be on for the next 5 years. She said I could start it that day but I kind of thought it would be a little much to be taking Tamoxifen AND doing radiation. I spoke with my radiation oncologist about it during my CT scan last week and he agreed with me. Obviously it made me feel better that he agreed with me but I think I would have waited anyway. It would be hard to deal with the side effects of the Tamoxifen AND radiation at the same time.

When my oncologist and I were talking about tamoxifen we also talked about how chemo and tamoxifen can put some women into early menopause and it will be hard to tell which one is responsible if it does happen. Then she told me I absolutely cannot get pregnant on tamoxifen because it is terrible for the baby. So I asked (again) how long I have to wait to get pregnant. She said we can talk about it in TWO years!! Wahoo!

Last week, as I mentioned above, I had a CT scan for radiation. They use it to map out exactly where the radiation is going to go. I also got my little tattoo's. So now I'm just waiting for them (my radiation oncologist and the physicists he works with) to map it and then they'll call me. Next I will do an x-ray and kind of a trial run and then I start radiation the next day. I'm kind of sad because in a way it feels like I'm done with all my treatments and now it feels like I have to restart it.

My hair is growing back slowly. It's looking very light so I'm scared its grey! But my mom reminded me that there's always hair dye if it is. But she thinks my hairs growing back like it first grew in when I was a baby. Light at first then progressively darker as I get older. My hair was strawberry blonde when I was little and was lighter in the summer. Ugh I miss my hair so much. I hope it grows faster than everyone else's. Ha!

We had a great Easter weekend with family and last week I went to Mackenzie's Easter egg hunt at her daycare. She was so cute. Last year she didn't really get the concept of picking up the eggs but this year she loved it!

I picked up Time Magazine today because of this cover. 
I'm interested to see what it says. I have a little bitterness in me that thinks someone out there knows the cure to cancer but its a better business to keep it secret. I mean if there was a cure to cancer who would get the $15,000 per cycle chemo money that my insurance just paid. There is encouraging news that comes out almost every week about new genes being discovered or as I mentioned before they are working on a vaccine for my type of breast cancer. I can't wait until someone figures this thing out. Because cancer really messes up a lot of peoples lives. And I hate it. 

My friend Beka is raising money as the Leukemia & Lymphoma Woman of the Year and posted this video today: video. This kind of stuff AMAZES and excites me so much! I have tears in my eyes just thinking about it. Also if you'd like to donate to Beka here is the link: donate here!