9/19/13--Thursday--Day 341--The Last Leg of the Race and Finishing the Race.
Well, we have just about made it to the end. I am down to three more treatments, and next Tuesday, I will ring that bell in the radiation department to signify the end of radiation, the last leg of this race, and the end of cancer!
I'll apologize ahead of time for the length of this blog. I feel badly that it has been a month since my last blog, but since we have relocated to Mesa for treatments, we have kept ourselves super busy. Greg and I both set up offices in separate rooms so we could work remotely. As each evening approached, we shut down our computers and headed out of the house spending each night with different friends, or with Preston, going to a movie, or eating out. That has been an important part of keeping our spirits up during these six weeks. We have really enjoyed connecting with old friends, socializing, and enjoying some of the food and entertainment the big city offers. And, we are forever grateful to my Aunt Mary for opening her house to us and letting us stay here.
Overall, radiation has gone very well with only a few setbacks or side effect. I ended my last blog after the first week of radiation when I was developing a rash. By Monday morning of week two, the rash had spread from my hand and forearm to my upper arm and a large marble-sized hard bump had formed above my elbow which was red and hot. Research on the Internet suggested either a blood clot or Cellulitis--neither of which were good. The doctor had the same concerns and wanted to see me right away, so I left work early and we headed to Mesa. Dr. Grade's PA, Aida, saw me as soon as we arrived. She ordered labs and an ultrasound of my arm to look for a blood clot. Both tests came back negative. With both ruled out, Aida suggested it was a bite of some kind. She wanted to proceed with radiation, but directed me to start on Benadryl, Advil, and Cortisone cream. I agreed since the labs showed no infection and the ultrasound showed no clot, but something just didn't add up for me. If it was a bite, why did it start in the hand and move up to the upper arm instead of the reverse?
Monday through Wednesday nights I did what Aida suggested but by Thursday, the rash persisted and the bump was getting larger and was still hot to the touch. After radiation I saw Dr. Grade for my weekly appointment. After examining me, she agreed it probably wasn't a bite, but an infection of some kind. She said the bump was probably an infected lymph node (I didn't even know there were lymph nodes by your elbow but I guess there are). Because of the lymphedema, infection wasn't draining from the arm so it began swelling and the rash appeared. Then the infection landed in the lymph node and began swelling. As we thought about the possible causes of the infection, we realized it's possible that the weekend I stayed at Preston's to kitty-sit, his new kitten, Waffles, might have left microscopic scratches or a puncture from when I played with her. Even though there were no visible marks, a cat scratch would explain how it started with the hand. Because of my lymphedema, any kind of puncture, even microscopic, can be dangerous. I have been wearing gloves to clean house, wash dishes, and even to work in the yard, but it never occurred to me the kitten would be dangerous. To treat the infection, Dr. Grade started me on Keflex, an antibiotic I had been on when my toes were infected during my last chemo round. We figured it would be better by the following week.
As week two ended, we filled the prescription and left for the airport to fly to Boise to meet up with Brooklyn. It was the weekend she moved into her dorm at Boise State and I wasn't going to miss being there for her. We had a great evening in Idaho preparing for the move and Friday morning we were up early and heading into the city with two carloads full of Brooklyn's belongings. My stamina was low, but I was determined to help as much as I could. Brooklyn's campus apartment is on the fourth floor with only staircase access. I wasn't sure how many trips up and down the stairs I would make, but I was going to give it my best shot. She has a great corner apartment that is super spacious with a full kitchen and a nice living room as well as a washer and dryer. There are four girls who share the space but each has her own room. Brooklyn shares her bathroom with one girl so it is really an ideal setup. It didn't take us long to get her set up and by Friday afternoon Brooklyn and I were off to shop for apartment essentials while her dad worked on changing the fuel pump in her truck. By late afternoon, I was super tired, but hanging in there.
Saturday I had noticed my throat seemed really weird, almost I had a piece of bread lodged in it. By the afternoon, I was having some trouble swallowing. It almost felt like I had to gulp to swallow, but it wasn't hurting on the inside like a sore throat would. Just before we left for dinner, I called my good friend, Diane, who is a nurse, just to pick her brain on if this could be a side effect of the radiation. She said probably not, but it could be a bad reaction to the antibiotic I had started so she wanted me to call the doctor. As I explained what I was feeling to the radiologist on call, he was afraid I might be having an anaphylactic reaction to the antibiotic. He told me to stop taking the antibiotic and go to the emergency room if it got worse or I started to have trouble breathing. The anaphylactic reaction made sense. To have that type of reaction, you have to be exposed to the allergen one other time--I took medicine for the first time for my toe infection in July. Then your body builds up the allergic reaction to it, and the next time you are exposed to it, your body has a bad reaction. It seemed to make sense.
Sunday we spent the day buying Brooklyn a bike (and teaching her to ride it since she hasn't ridden in years), and seeing some of BSU before we left to see some of the rodeo events for Trina's kiddos. We ended the night finally meeting Tina, the woman who has cancer and made a video of getting a blue mohawk when her hair started to fall out. We learned of Tina and the video through our good friend and former neighbor, Gayrene. She is a counselor at EAC where Tina's son attends college. Gayrene met Tina in December, just after my diagnosis had become worse. She told Tina of my story and then shared Tina's video with me. Before my Pretty in Pink party in February, Brooklyn secretly found Tina in Boise. She met her and they did a photo shoot together and surprised me with it during the party. What a small world we share. It was really nice to meet Tina in person and I was grateful she had befriended Brooklyn. It gave Brooklyn someone in Idaho close by that she could relate to who was going through a similar situation as I was and therefore made Brooklyn feel more a part of me. It was intriguing spending a few hours hearing Tina and her husband share their experiences with this horrible disease.
We flew back to Mesa Monday morning and began week three of radiation. My throat continued to be a challenge but the doctor started me on a different antibiotic for my arm and I figured the lump would go away in a few days. I saw the doctor for my regular Thursday appointment and questioned the situation with my throat. I asked her if the radiation could be damaging my throat and she assured me it wasn't. She said we weren't treating anywhere close to my throat. I told her I was confused because I thought she had originally said we were treating my upper clavicle lymph nodes. She looked at her paper and said we weren't. I left feeling really confused because it seemed in conflict of what I remembered her telling me when we first started. She had originally told me she would treat the upper lymph nodes because if the cancer were to return, that would be the most likely place since my other lymph nodes were all taken out. By the time we drove home, Dr. Grade called me and apologized. She said when she left the room, she was concerned too and went to look up my records again. She then said she was treating my upper lymph nodes and it was really close to the larynx, which could be causing the discomfort. I really respected her for calling me. It set my mind more at peace for the weekend.
On Friday, it was nice to head back to Safford for the Labor Day weekend since we had been away for two weeks in a row. I have the sweetest neighbors ever. Gayrene and her daughter Kristi left me cute balloons counting down five done the first week, and now they had a sweet sign with Milkyway bars lining the number 15 for being half way through. We had a great, relaxing, long, much-needed weekend at home.
When we returned on Tuesday for week four, my throat was still really bothering me. I had finished the second prescription and it had been five days since I had seen the doctor. Sue, Dr. Grade's nurse, came to the waiting room to check on several of us. When I told her my throat was still bad, she was perplexed. She had never heard of this kind of reaction to radiation for breast cancer, and honestly, she almost seemed frustrated with me. She took me back to an exam room and paged Dr. Grade saying, "We're going to get to the bottom of this." When she told me they weren't treating anywhere near my throat, I explained what Dr. Grade had said when she call me the previous week following the appointment. I finally said, "I'm not making this up. It is really difficult to swallow," then Sue seemed to soften up a bit knowing I was as frustrated about it as she was. She assured me we would figure it out. When Dr. Grade came in, she explained that before coming to MD Anderson where she focused mostly on breasts, she treated many kinds of cancers. The lump-in-the-throat effect I was experiencing was a common complaint from throat cancer patients and it was likely I was experiencing that same effect. She showed me how far over the radiation was coming and how high up it was so it was actually crossing up high by my neck to get the mammary glands since the PET scan had shown there was a tumor there and it couldn't be surgically removed. She assured me that the lump would go away about two weeks after the radiation treatments ended saying, "I would stake my reputation on it." As Dr. Grade walked me back to the dressing room, we ran into Sue and Dr. Grade explained what she had shared with me to Sue so she would have a better understanding of the situation. I left feeling much better. Finally, someone validated that what I was experiencing was a normal or expected reaction to something, and, it wasn't going to be permanent.
On Wednesday of week four, after radiation, I was taken back to the original room where they did my first mapping. This time they were planning for my boost. Boost treatments are the last five treatments that target just the scar area from the original lumpectomy. For this they start with a CT scan. Following that, they use what looks like a large, clear, plastic clamp. They hook the clamp to the table then place a clear, plastic, square paddle over my breast. With the paddle attached to the clamp, they compress my breast as much as possible squishing it down into my chest. The point is to flatten the breast so the tumor bed is as close to the surface as possible. During the boost treatments, they use a different type of radiation, electrons, which are more surface penetrating rather than protons that permeate all the way through the body. They also use a larger dose of radiation as they are targeting the tissue where the tumor actually rested to make sure any cancerous tissue that might be remaining is killed. When they were finished doing the boost treatment tagging, I was up to 20 tags on my body. I had the original black and purple marks, then I had orange marks, and now I had green boost tags. It was actually funny. They ran from just above my breast to around the sides and underneath and on my belly and were even on the other side and breast to help with lining me up.
We headed home on Friday after treatment and I went to the office. On the weekends home, I usually worked Friday afternoons and Monday mornings in the office, which was nice to be face-to-face with my team. Those were very productive times as we would squeeze as many meetings and project updates into them as possible.
Monday afternoon we returned for week five knowing we would be in Mesa for two weeks in a row again since we had plans with friends on Saturday and a Cardinals game on Sunday. During week five we were invited to go for a hike in the Pinnacle Peak mountains by our good friend Paul. I was scared at first; I haven't had much energy and wasn't sure how I would do. It had been raining for a few days so the temperature was perfect at 82. When we arrived, I wanted to climb the trail up to the top of the mountain, but by the time we had hiked to the fork in the trail, I knew I couldn't make the climb up so we opted for the lower trail. I still did pretty well overall and finished the trail, which was the most I have hiked in months. I was super encouraged and motivated to start my journey to getting back in shape so the next day, we decided to hike with Preston. This time we hiked by his apartment up the Papago mountains by the Phoenix zoo where Hunt's Tomb is. I made it to the top and we watched an amazing sunset over the cityscape. As week five ended, Greg noticed my underarm and under my breast looked almost black and blue. It was the first physical signs of the radiation we had really seen other than my skin being a little red. It looked like someone had actually beaten me with a bat. Greg and I wondered if it was a result of hiking since my arm was rubbing my side.
Last week we also had our last appointment until December with Dr. C, my oncologist. She told me as soon as my last radiation was finished, I would be starting Arimidex, the pill I will have to take for the next five to ten years. It is a pill that is an antineoplastic or more precisely, a nonsteroidal aromatase inhibitor. Basically it inactivates aromatase, which is what converts certain enzymes in women (androstenedione and estrone) into estrogen. Since my cancer was estrogen fed, I have to keep my body from having any estrogen to keep my cancer from returning. I had heard some scary things about some of the "after cancer" pills, so I asked Dr. C. what if I didn't take it. She said I would have a 50% chance of my cancer coming back if I didn't take the pill. I think I'll take it and deal with any side effects. Since Arimidex can cause a loss in bone density, I had to have a bone density scan. I returned to the imaging center where my friend Pam works and where this all began. It was nice to see her and she loved my hair, which has grown in quite a bit. The bone density scan was the easiest test I've had yet. I laid on a table while an arm hovered above me moving from my thighs to my chest. To test bone density, they test your left hip and you lower spin only. The technician said that is because those are the first places to break down. The results of my bone density test came out good as I am not showing any bone density deficiency as of now. That is great news since most women my age are already in the osteopenia stage, meaning they have lost bone density but are not yet in full blown osteoporosis. I was worried since my mother had osteoporosis. Prior to the bone scan, I also had a mammogram on my left breast. That was a little scary when the radiologist requested a second scan because he saw something. My heart dropped at the thought that they were now seeing something in my left breast. I can't tell you the horror I felt as I waited for the results of the second scan. A new scan showed what he was seeing was just scar tissue from where my port was. A huge relief almost brought me to tears.
We enjoyed the weekend activities and the Cardinals game and started on week six, this week. Kalib and Ernie have been my radiation therapists during this entire journey. They have been great. On Tuesday I took them and others at the Cancer Center more Hugs and Kisses, but this time in little glass jars with a ducky on top. This is because when Kalib and Ernie ask how I'm doing each morning, sometimes I answer "Just ducky" and we all laugh. It was also to celebrate my "one more week" mark. They have made each session fun and we always smile and laugh. They both are excellent and have offered great help throughout this. I told Kalib I had started hiking last week and he recommended I not hike for now. He said any friction or sweat can break down the skin even more, so that was probably what had caused the bruising look under my arm. So we decided to give it a few more weeks before we start walking, even after we return home.
My boost treatments started on Wednesday. No more holding my breath--though I've become really good at it. I also got to peel off all of my tags except for the green ones, yay! With the boost treatments, they squish my breast using the clear paddle and line me up to a led cast that was pour to outline the shape of my tumor bed. They were able to create the shape based on the CAT scan they did a few weeks ago. This led mold keeps the higher doses of radiation from penetrating anywhere except exactly where they are directing it on my scar. The boosts are super simple and super fast compared to the regular treatments. It takes longer to set me up and line me up than to receive the treatment. Each day I've gone in this week I can't help but have a huge grin on my face knowing we are almost to the end.
This morning we did notice signs of peeling under my breast. Dr. Grade said my skin will continue to break down and get worse for about two weeks after treatment, then it will start to repair itself. She said it actually repairs very quickly, but when we asked about the lake, she insisted no lake water for several weeks until it is completely repaired, so I guess that definitely means lake season is officially over until next year. I also showed her a rash I have developed in the bend of both of my arms. She said it was a yeast infection and suggested a topical cream for it. Then she started to wonder if I didn't have some type of yeast infection attacking my throat as well. She instructed me to start eating yogurt again and see if it doesn't help my throat. Who knows, but it does makes sense. It did start just after a few days on a powerful antibiotic so maybe that's been it all along. We'll see.
Each day since the start of radiation, Greg has been great. He has applied Aloe all over the radiation area several times a day, he's repaired my tags as they would start to come off, and he has gone to every treatment with me. He continues to be my rock and amazing support system. A few weeks ago he and I headed back up to the infusion floor to see some of the great chemo nurses whom we love. They were so happy to see us. We took them goody bags with Hugs and Kisses and told them we missed seeing them but didn't miss being on that floor. Cheryl and Heather and others were super glad to see us and said it takes a lot of courage to go back there because it is a place that holds tough memories. Greg and I both agreed, but I'm so glad we went.
So tonight we are packing up our things from my Aunt Mary's house, and moving out of our temporary home over these last six weeks. Tomorrow we will head home for the weekend after my treatment. We will come back Monday afternoon, but have decided to get a nice hotel Monday night, the night before our last treatment. Then, Tuesday morning, sometime around 9 AM I will be finished with my last treatment and go into the radiation waiting room where I will ring the bell as a symbol of my treatment for cancer ending. We have invited the nurses and technicians from different areas of the cancer center who have meant so much to us as well as our family and friends to help us celebrate as we walk away from this challenging year. I will finish treatment 346 days after it all began, exactly 19 days short of a year from when this journey and this blog first began.
Greg has arranged for the most amazing culminating event as we end this journey and begin to celebrate life. On October 6th, I will be on the Cardinals football field during their breast cancer awareness halftime show! As we approach the one year mark and I reflect back on this horrific journey, I often think about the Cardinals game halftime show a year ago. In a way, that event saved my life. It was a strange sensation being at that game last year before I knew I had cancer. I remember feeling so empathetic towards the women on that field and saying to my friends, "If I ever have breast cancer, I would want to be brave like those women--brave enough to be on that field in front of a huge crowd to celebrate surviving." The events from that day raised my awareness and made me think twice the next morning when I got out of the shower and felt something a little odd on my breast. So in a sense, that halftime show saved my life. So ending this year, my treatment, and this journey where it all started, but actually on the field this time, is going to be an amazing celebration of surviving this Last Leg of the Race and Finishing This Race.
