January 16, 2012

I’ve been putting off writing this blog because I thought somehow, if I put my experience in writing, it’s going to be more real. I know in my head that’s not true – this is already real, but it’s easy to wish it were just a bad dream. I feel like I have overcome multiple challenges in my life – but never did I expect to have to overcome this one, especially at 35. I was diagnosed on December 27, 2011 with Invasive Ductal Carcinoma. Breast Cancer. This is the story of what I’ve been through so far – and how I’m going to beat it! Feel free to leave a comment or e-mail me if you'd rather. Or just follow our journey. Ben and I are so grateful for all the support we are getting right now, it means so much to us.

October 26, 2011. It was a normal night at the Parkey house. I put Stella to bed and went to plop down on the couch for a little down time at the end of the day. Ben was grabbing a drink with a friend, and the house was quiet. As I walked into the den, somehow my hand brushed my chest – it was just in passing, without any thought. I realized that I just brushed something that hadn’t been there before. A tiny lump under the surface of the skin, like a hard pea. That had definitely never been there before. My mind immediately jumped to the worst case scenario, but then I tried to tell myself that that’s crazy, I am way too young for that and this was probably nothing. Nevertheless, I called Ben, scared, and he came home right away. The next morning I called my ob/gyn and she got me in that afternoon.

October 27, 2011. My appointment was at 1:30. I anxiously arrived and put on the gown as I was told. Dr. H. came into the room and did the exam. She said she did feel a lump, but it was probably nothing. Women have benign cysts all the time. It could be a clogged milk duct from the year before, or any number of other things, but “don’t lose any sleep over this.” Then she ordered a mammogram, which was scheduled for 5 days later.

Needless to say, I lost lots of sleep that night. The first of many sleepless nights.

November 1, 2011. My first mammogram ever. You’re not supposed to go until you are 40, but here I was for my first one at 35, and to top it off, I was there for a REASON. I had FOUND something. I felt like THAT patient, the one who you never want to be. I looked around the waiting room at all the other women, envious that they were probably there just for a routine mammogram, and not for a REASON. Ugh – I could not wait to get in there and get this over with so that they could tell me it’s nothing and I could go home.

So finally it was my turn. A nice nurse took me back and told me it would be a “little pressure.” I had heard it was going to be awful, but really it wasn’t that bad. I was much more nervous about the results. The nurse left the room, and came back saying I should follow her to another waiting room. I was then called for a sonogram. Here they did an exam (just like when you are pregnant, but on your breast) and confirmed that there was a “complex cyst.” It looked like it was mostly filled with fluid (good) but that there were a few flecks of solid tissue in there (bad) – which were suspicious. I was told that it looked like a complex cyst, and I should create an appointment for a cyst aspiration the following week. They were going to stick a needle in my boob and drain this! Yikes! But somehow that seemed less scary than not draining it – so I made my appointment.

November 8, 2011. I took Stella to her usual Tuesday Mother’s Day Out school, then arrived at Presby Dallas at 10:30 for my cyst aspiration. I had the nicest nurse and the most professional doctor. He numbed me and inserted a needle into the cyst to drain it. He said it seemed a little tough on the edges. When he managed to drain the fluid, it was tinged red with blood. Because it was supposed to just be straw colored, it was deemed suspicious (once again) and sent to the lab. Six days later I got a call saying that the cells were “atypical.” Apparently cells are either “normal” or “atypical.” There are no other options. Atypical means that the cells COULD be PRE-CANCEROUS. That’s what they told me. But it also means they could be cancerous. I didn’t realize that at the time. But maybe it’s better that I didn’t! I was given the name of the surgeon that my ob recommends – they had told her the news already. They said Dr. B. is outstanding, and he will take great care of me. The only problem was that I couldn’t get in to see him for a month! That’s a lot of waiting when you think you might have pre-cancerous cells! I just wanted to get these bad cells out of my body. But I didn’t want to risk going to someone sub-par either, so I did what anyone would do – called and bugged the receptionist over and over until she got me in – 2 weeks and 2 days later. That was a little more like it. :) Thank goodness for Ben during this wait – I would have driven myself crazy. He always reassured me that it would be ok, and that we’d get through this together.

November 30, 2011. Dr. B’s nurses were so nice. And so was he. Although it was very strange to be sitting in a Breast Cancer Surgeon’s office, with pink ribbons everywhere, when I was just there to talk about my benign cyst. But he was the best – so he looked at my pathology report from the cyst aspiration, and even went and called the pathologist who wrote the report. He came back saying these suspicious cells were dividing very fast, and he recommended that I have this lump removed. That meant surgery! But I was surprised at how ok I was with it. I just wanted these bad cells OUT of my body.

December 15, 2011. Surgery #1. But at the time I thought it was surgery # THE END OF THIS MESS. My mom arrived in Dallas at 7 am to watch Stella, and Ben and I were off to the hospital. Good ol’ Perot building at Presby – again. We had been there so many times – throughout IVF, pregnancy, sonograms, Stella’s birth, and Stella’s stay in the NICU. But this was new. The worst part of the day was when the nurse couldn’t get my IV started and blew a vein. But if that was the worst thing to happen, that was ok, I thought. The surgery went without a hitch and I went home a few hours later, one lump lighter, with a tiny scar. Some of my wonderful friends brought dinner and flowers over, and I was on the road to recovery – or so I thought! Dr. B. had told me that we would get the pathology report back soon, but not to worry because “they send everything to the lab around here – you get your fingernails clipped and they send it to the lab!” He took very small margins (~2 mm) when he excised the tumor because he fully expected it to be benign. 

December 27, 2011. I had called multiple times to see where my pathology results were. They kept telling me that the lab was backed up from the holidays. But I got the call on December 27. It was first thing in the morning and it was Dr. B. himself. I knew that was not good. Surgeons only call if it’s bad news – if it’s nothing, you get the nurse. He just came out and said it: “Allison, you have breast cancer. It’s stage I. You need to cancel whatever you have going on today and come into my office – you are going to need more surgery, and a treatment plan.” My jaw dropped, I hugged Stella, who was sitting in bed with me innocently drinking her sippy cup of milk, and I called Ben, in complete tears. He was driving to the airport for a quick guy trip to Vegas – but he immediately turned around. He actually came home so fast that he got a speeding ticket. You know what the cop said when Ben told him he had just found out his wife has breast cancer? “Sign here.” JERK! That still makes me want to call the news….

So that afternoon, my wonderful mom cancelled her plans and came over to Dallas to watch Stella so Ben could go with me to see Dr. B. I can’t even start to explain how helpful my mom has been throughout this process! We talked everything over with the nurse while we waited for Dr. B. to get out of surgery, then Dr. B. came in and answered all of our questions. He laid out some options – I could have a lumpectomy with radiation, or a full mastectomy (he recommended a double mastectomy if I were going to go that route), but either way he said there is a 95% chance I would need chemotherapy. Whaaat? I thought I was just stage I? But he said my cells were very fast growing (grade 3) – an aggressive form of cancer – and we needed to do everything we could to stop them.

Then another bomb was dropped. Dr. B. asked the nurse if she had discussed pregnancy and fertility with me. Not yet. Apparently once you go through chemo, your ovaries shut down and you go into menopause. So if we ever wanted to have another child, we had to make an appointment with the fertility doctor – and fast. Good thing we had jumped through that hoop before! I can’t imagine how overwhelming that would be to have to learn about the process of multiple shots a day, doctor appointments every other day, sonograms and bloodwork, and egg retrieval, on top of finding out you have cancer. So I called Dr. C. (our fertility doctor) and got right in. Here we go…..

December 29, 2011. Once again, Mimi (my mom) arrives to watch Stella. My instruction lists with her routine on it are starting to get shorter. Not that I ever doubted she could handle it – it just makes me feel better to know I left good instructions in case she actually wants to read them! Hee hee. So this time Ben drove me up to Presby – yep, the good ol’ Perot building – and I had to get an IV for my MRI, CT scan, and bone scan. Dr. B. wants to make sure the cancer hasn’t spread anywhere else. The scans themselves weren’t that bad. The hospital gown, on the other hand, was made for a 500-pound man - it was huge! The worst part was the IV. Every single scan requires a different contrast fluid to be injected. It’s crazy to me that these fluids don’t cancel each other out! And I had to drink two glasses of red juice – another contrast to make my insides light up on these tests. I was so grateful for Ben, once again at my side all day, reassuring me that things were going to be ok. We found out the next day that everything came back clean – hallelujah! A little bit of good news!

January 3, 2012. We started fertility shots. Ben gave them to me every day until egg retrieval, right in my tummy. He is a pro! No matter what comes of all this, we wanted to know that we gave it our best shot at a sibling for Stella. We are forever grateful for our miracle baby girl, don’t get me wrong. But it is very scary knowing you are about to lose your fertility forever. So we wanted to give it our all. Throughout the process of giving shots and going to appointments to watch my follicles (eggs) grow on my ovaries, we squeezed in a few more doctor appointments – we got a second opinion with another breast cancer surgeon, Dr. K., and a nurse navigator at the new Joan Katz Breast Center in Fort Worth, who did a wonderful job explaining everything we were about to go through. I also did a lot of thinking. The more I thought about it, the more I realized that no treatment was going to be acceptable for me unless it fought this awful disease 110%. I have a 1 year old who needs her mommy – for a long, long time! And I have many, many happy years ahead of me to be married to my Ben!

I came to the conclusion that I was going to fight this battle so hard now, and knock out the enemy, cancer. I decided on a double mastectomy (with reconstruction), and a full course of chemo. And nothing less. I’m so grateful that Ben was on the same page too! We had consultations with the two best plastic surgeons, who specialize in reconstruction and work with Dr. B. – Dr. K. and Dr. H. We loved them both and decided to go with the one whose schedule coordinated with Dr. B’s first – and that was Dr. H.

We are now set for a double mastectomy on January 25, with the first stage of reconstruction to be done at the same time. Reconstruction will require multiple follow-up surgeries, but the biggest will be this first one. I'll have to stay in the hospital about 3 days. At least I'm familiar with it now - I even give people directions last time I was there! I think that means I've spent way too much time there.

I also go in for surgery on January 18. Dr. B. will biopsy my sentinel lymph node to see if the cancer has spread. That means just a small incision under my arm pit. I will also have a port placed in my chest for chemo. This will give easier access to my veins for the strong drugs to drip straight in by my heart. I am scared!

We also had a chance to meet with my oncologist, Dr. M. She is amazing! She wants to be super aggressive with my chemo – she definitely picked up on the fact that Ben and I want to knock this out hard! So I am going to have 16 rounds total. The first 4 rounds of chemo will be every two weeks, with two drugs combined. Then I’ll have 12 rounds every week, of a third drug. Breast cancer is not going to stand a chance!!! It will wish it had picked someone else to pick on. Ha!

January 11, 2012. Last but not least, we had egg retrieval. I had 5 eggs, 4 were mature, and 3 fertilized normally. That’s just about as good as can be expected. So we now have 3 frozen embryos that we can try once I clear all this – maybe in a year or two. It’s 3 chances at a sibling for Stella. Even if the doctors don’t allow me to carry the baby, it’s a chance at a biological sibling for her, even if it has to be carried by a surrogate. But we’ll cross that bridge when we come to it. For now I’m going to try to focus on getting well. It’s strange because I don’t physically feel bad, yet. I know it’s coming. I worry about trying to take care of Stella during all of this, and keeping her life as normal as possible. With the help of Ben, my family, and my friends, I know I will get through this, she will be taken care of, and we will be able to move on with our lives. I am not very good at asking for help but I am learning. Cancer is humbling, and I am more grateful to every single one of my friends and family members than they will ever, ever know.

Tomorrow (Tuesday) I go in to have a radioactive dye injected into the place where my tumor was. It will travel to my lymph nodes, so that Dr. B. will be able to see which ones are the first (sentinel) nodes, and he can remove them on Wednesday to be tested. Hoping and praying they come back negative!

To be continued…and I promise no other entries will be this long. Just trying to catch everyone up to date!