6 more treatments

Tomorrow I continue with my "boost" of radiation. When I went for my first boost on Thursday it took a little while to set it all up. There is a very concentrated area around my mastectomy scar that they are focusing on. There is a cone that comes out of the machine that holds a little metal piece with the shape around my scar. They also drew on me with the same shape so they can line it up. Unfortunately for them, my skin is peeling and their sharpie peeled off this weekend. The boost treatment is much faster then the regular treatment. Its about a 20 second burst of radiation and that's it. Before it was that 5 times.

I am really glad that I have been blogging about everything...the good and the bad. I would NEVER believe today how bad my skin looked the last 2 weeks because my skin is so much better now. I forgot all about my drains and after my mastectomy and chemo. Although every time I think about chemo I get a little nauseous.

I am SO excited to get radiation done. It is such a pain in the ass to go to everyday. When I got there on Friday they told me they were running 45 minutes late so I left and came back later. I think they forget that we are still working people who have lives. Even if I wasn't working, who wants to sit in a waiting room for 45 extra minutes?

I started to not wear anything on my head when I go out, except to work. I still wear my hair to work. But I forget that I have SUPER short hair and then I wonder why some people keep looking at me. Its so normal to me that I look like this. I know if I saw someone with super short hair like mine that I would probably look at them and wonder too. I still can't really tell what color it is. The top looks lighter than the sides. I think just because it stands up and the sides lay flat.

last chemo: 2/28, pic taken 5/25- 3 month hair growth

This weekend we worked on changing Mackenzie's room to a big girl room. Her crib converts to a full size bed so we bought her a bed on Saturday and it was delivered today. Last night as we were putting the frame together and cleaning the rest of her room out I got so emotional. I was always expecting to put another baby in that room and never thought we would be using that full bed so soon. I have been spending the last 3+ years figuring out how to put 2 kids in that room room in my head and now there's no room for another baby. Its been the hardest pill to swallow. BUT the child that I have is SO ridiculously happy with her new room and is so excited to be a "big girl". Tonight is the first night in her big bed and it took awhile but she is finally sleeping pretty! I'm sure Bailey doesn't mind it either!

We also took Mackenzie to her first movie in the theater on Saturday. We saw Epic. She LOVED it! She got her own little popcorn, fruit snacks and drink. She sat still for the entire movie! I was very impressed. Next up will be the new Monsters, Inc. movie comes out in the end of June! 

Next Tuesday is FINALLY my last treatment! I am SOOOOOOOOO excited! 

How things are going

Last Wednesday when I went to radiation they made me see the doctor before I could be treated because of my burns. The doctor said I should have treatment that day but should take off Thursday and Friday giving me a 4 day weekend. The break was nice but it's not like it really helped clear up my burns. They're still here. In fact, today the radiation therapists made me see the doctor again before I could be treated. When they asked how my burns were I said better and worse. There are parts where I can see new skin (right under where it says armpit on the picture on the left) and that's great. But as you can see in the same picture, the overall look is worse. The picture on the right is on my ribs and that's the other gross part that is oozing and peeling. I have been taping surgical pads to me because they're usually oozing. I told the doctor today, its not really painful its just GROSS.

I have 2 more regular treatments and then 1.5 weeks of the boost. I think I'l be done June 4th. That's my guess anyway. That will be almost 8 weeks of treatment on and off. I can't wait for my poor skin to be back to normal. I feel like I have to walk around like I have my arm in a sling so I don't move it too much. At least with the surgical pads it feels a little bit better less gross.

In other news.....

I'm super excited that you can FINALLY see some hair! I still can't tell what color it is going to be. The sides look dark but the top looks tinted red a little bit. Maybe that's just wishful thinking! 

This weekend we also celebrated my brother Ryan's wedding to his new wife Claire! The got married last month in Hawaii (lucky!) and had a party this weekend in Arlington. It was so fun and so great to see all my family. This picture is kind of crappy quality but you get the gist. We are all so happy to have Claire in our family! 

I read this article today on Huffington Post (click here) and it is like this guy wrote it from my thoughts. Its been a lot on my mind lately about how I should feel and how people think I should feel. I try really hard to keep a positive attitude because that's how I cope with having cancer. My happy face isn't to make anyone else feel better about it. Maybe that sounds harsh. It might be. But I honestly can't really care about how my cancer makes other people feel that aren't my immediate family. Some days (besides going to radiation) I really don't think about having cancer. But some days are REALLY shitty and really scary and I almost panic that I actually have cancer. I wish that as soon as radiation is over and I get the all clear that I never have to think about this again but that's not the reality. I'm excited to get this over with and start to be able to physically and mentally move on and hopefully just have to remember I had cancer every 6 months or so for scans. I have such mixed feelings about radiation ending. Obviously I cannot wait to not have to due this anymore but it's still pretty scary to not get any more treatment. 

It's never going to end

I haven't talked a lot about radiation. It's been really hard emotionally and physically. Right now I'm in A LOT of pain. The burns in my arm pit and the area underneath my armpit and on my ribs are starting to peal and blister; its just so painful. The radiation therapist today told me that she was surprised that I seemed happy because I looked like I should be in a lot of pain. I told her I was in a lot of pain!
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Yesterday, I almost didn't get treatment because my skin was so bad. But luckily they did my treatment and I got prescriptions for a new lotion with lidocaine and Vicodin  I used both yesterday and I finally got some sleep. I still woke up every time I moved but I felt rested when I woke up. I was kind of hoping that I would get the fatigue side effect but I have the opposite because I'm in so much pain.

Radiation has been really hard emotionally. I've shed a lot of tears. I said before that it's hard because its a constant reminder that I have a cancer. Mostly I cry after treatment; a few tears here or there while I'm changing. At first I would cry because I was scared about treatments being over but now I'm just so miserable I can't wait for it to be finished. Yesterday I had tears in my eyes during treatment because it hurt to keep my arms over my head (I lay down but my arm pit is so tight it hurts to put my arms up).

As of right now I have 4 regular treatments left and then 1.5 weeks of a "boost" treatment just to my mastectomy scar. During regular treatments, the machine stops at 3 different spots; to the left of me, to the right of me and directly above me. When the machine is to the left and right I had a wet towel put on the right side of my chest to make the radiation more intense there since I don't have breast tissue anymore. Yesterday because of how bad my skin looked, the nurse practitioner decided that I shouldn't have the wet towel anymore. Hopefully, that will make my skin feel better faster.

My radiation burns look so funny to me. There is a definite square on my chest of where the treatment is. I also have 2 spots on my neck (that you can see in pic above). I can't wait until my poor skin is back to its normal pale color. I was expecting to get a sunburn but I really wasn't expecting my skin to get this bad and that radiation would be SO painful. Its starting to feel like treatment is NEVER going to end. I've had cancer for almost an entire year. I'm ready to not have cancer, to not be in pain and to finally get a vacation! 

Happy Mother's Day!

Mom:

I’m not sure exactly how to start. There really aren’t words to say how I feel. You’re amazing. 10 months ago I couldn’t have imagined how much our lives could have changed but if anything good has come from it, it has brought us SO much closer.

I can’t imagine how it felt to have your daughter be diagnosed with the same exact disease that you battled just months before her diagnosis. Honestly, I pray I never have to feel that feeling. And although I know it’s been a very scary journey, you have never wavered from my side. You have been my biggest supporter and cheerleader, my sounding board, my shoulder to cry on and my care giver when I literally couldn't care for myself. You never hesitated to empty drains, shower me, wipe my tears or come with me endless appointments.

I said towards the beginning of this cancer journey that I was the luckiest cancer patient in the world. I am surrounded by the strongest friends and family. This has been really hard. Surgery is hard. Chemo is hard. Shaving my head is hard. Radiation is hard. I try not to think about how hard this is for everyone else because that just makes it harder.

You were the first person I told I needed a mammogram and the one who was there after my mammogram when I found out I needed a biopsy.  You were there when I had my mastectomy and stayed overnight in the hospital with me that night. You came to chemo with me twice, brought me to the ER twice. You just know when I need your help and you are always there without me having to ask. No one wants to have to take their child to the ER at 10 pm on Christmas Eve but you were there without hesitation. You always are. In college, I needed help moving and you were just there. I never had to ask; you just woke up Saturday and drove down to help me.

I’m so glad that we are best friends. There isn't another friend I can count on more than you because you are also my family. I am so lucky that I have that. When I think about me and Mackenzie in the future I pray that we have the same relationship that you and I have. I hope that I can be the unwavering support to her that you have always been for me. 

I'm not sure I could have made it through this cancer thing so well if it wasn't for you. I'm not going to pretend this was easy at all but some how I have been able to (mostly) maintain a positive attitude. I can't wait until this is all over and we can focus on better things, like beach houses and (hopefully) more grand kids. I love you mom. You're an incredible woman who I will always look up to and strive to be more like. 

On a different note. Today was the Susan G. Komen Race for the Cure. Our team was AWESOME! Gretchen made tutu's, Angi brought head bands and Zenia did face paint. We looked AMAZING! It was supposed to rain all day today but the rain held out long enough for the race and for a little dancing at the end! Except for the super early wake up time, it was so fun. I wasn't sure if it would be hard or emotional to be there or not. There were moments were I felt the weight of what this diagnosis means. But fellow survivors would see me and smile or ask to take a picture with me or hug me and that felt great. I knew throughout this journey I have never been alone but to see others that are walking the same path I am was incredible. Thank you so much to everyone who supported our team and especially to my teammates, for putting this team together for me and for being there. 

 

Me and my girl. Also...can you see my hair?! 

Rowena and I

Team Kylez Krusaderz

Zenia and I

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! 

Radiation

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 do...my 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.

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!