Day 207 - Phase 3: Radiation!

I've made it to Phase 3! Hooray. It's one down and 27 more treatments to go. I had my first round of radiation and boy, was it a doozy.

So last Tuesday, I went to OHSU for my "mapping." That was an easy appointment. I thought it was going to be longer than what it was. The first stage was to get on a table and lie there very still with my hands over my head. It was nice that I actually had a handle to hold. I was worried that I had to put my hands up without any aid. Next, they stuck wedges under my triceps to help keep me comfortable. Once they had me in position, it was time to line me up. There were two laser beams (red) that they centered me on. One beam was going from one side of the room to the other side of the room (horizontal axis). The other beam was coming from the ceiling. Once they had me where they wanted me, Dr. Marquez came into the room and marked me up... the top, bottom and the sides. Next the techs mapped me by pushing me through a CT scanner. Thank goodness they didn't need a dye/contrast. The CT scan is used to map my organs and figure out the best angles for the radiation beams to hit the areas they need to hit and to avoid certain areas (more to come). Following the CT scan, the tech then tattooed me. Three little dots to mark the planes for the laser beams for true radiation. I have one on my upper chest on the left hand side and two on the front of my torso under my breasts. I can't see the ones on the bottom unless I look in the mirror. Ahhh, the trials and tribulations of having such huge knockers! Ha! Following the CT scan, I was done. I was given alcohol wipes to wipe away the permanent Sharpie pen marks. That's a handy thing to have to get those pesky marks off. After that, the resident came in and made me sign a disclosure and we went over the things that could happen from radiation: decreased lung capacity, heart issues, cancer from radiation, skin reddening, loss of hair under the arm, lymphedema... the list goes on. But the benefits far outweight the negatives.

Fast forward today. I got to my appointment at Radiation Oncology shortly after 12. My appointment was at 12.30 with Dr. Marquez's nurse to go over some stuff about what to avoid and what will be good. I didn't get in until about 1.20p! What is it with 12.30 appointments? Nevertheless, we finally got into the door and had a consultation with Nicole, the nurse. We went over what was going to happen today and what to expect in the next few weeks. I am still on track for 28 sessions. So nothing has changed with that... especially after seeing my recent PET scan. The first session will be the longest. We went over how to care for my skin. Apparently there is this herbal supplement/lotion/cream that Dr. Marquez is high on... it's called calendula. It's derived from a species of marigolds. Maybe I should grow some in my backyard and squeeze out the oils and apply it to my skin! Ha! She said that I should put it on the areas where I will be radiated. Apply it twice a day. We went over the fact that I may be fatigued from radiation. And then it was question time. I asked if I would be able to swim during the time that I get radiation. I have been seeing/reading so many different answers. Nicole said that it was okay for me to swim during radiation, as it will help me with keeping the skin and the muscles loose during treatment. She said that many women swim during radiation and then toward the end they stop because their skin is changing and getting more tight. Sweet! I can go swimming in Becky's pool... (here I come Becky!) She said that when I get out of the water to make sure that I apply my lotion and rehydrate the skin. Oh yes, she said that I should use mild soaps and then when I dry myself off, I should pat dry my skin. Reduce any sort of friction that could cause aggravation to the skin. She asked if I wear a bra. She suggested no underwire (I don't, too uncomfy) and that if it starts to irritate me, that I could take a sock and slip it under the band. Nothing like stuffing a bra! I also asked what will my skin look like and when will I start to see changes. She said in about 2-3 weeks, I will start seeing some changes - like a reddening of my skin. The changes will continue up to 4-6 weeks after the last treatment. Radiation is cummulative. Groovy. We'll see what happens. Oh yes, my diet can stay the same... however, I should stay away from antioxidant supplements.

Next up was the actual radiation where I got to sit on the bed and be radiated. So after speaking with Nicole, she showed me to the changing area. There are four changing rooms and each one has two lockers with keys. I changed into my gown. I got to wear my jewlery - all of it except for my necklace (which I wasn't wearing to begin with anyway). Next I was told to wait in the changing room wait area. It didn't take long before Rebecca rolled into the room. She's one of the team of four administering the radiation. She rolled in because she broke something in her foot. So she had a little scooter that she was using. She took me into the electronic room. She wanted to make sure that I knew who I was, when my birthday was and what sort of treatment they were performing today. I gave her all the right answers. I passed the test. Then she told me that the room had satellite radio. Sweet! I got to pick the music. I picked Top 40. It was hard to lie there and not move when all I really wanted to do was to groove and dance to the music. Anyway, I got to see a 3D version of my CT scan... with skin. Looked kind of frightening. It looked like one of those animated bodies you see on the news. Then it was on to the radiation room. There was a chair and a table where I set my purse and my locker key. Next I hopped onto the very hard table. There was a sheet lying over the table. Rebecca and another person, Linea, helped adjust me. They were matching up the three tattoos with the green laser beams. They told me not to move and that they would do all the moving. Finally they got me in the right spot. My arms were over my head and my head was positioned to the right side. The reason for me turning my head... they had to radiate the left side of my neck. They put the wedges under my arms and I continued to hold onto the handle bar. Then they raised the bed up and left the room

The first treatment takes the longest. It was awful. I am not going to lie. The first thing they do is take x-rays and scans of your body. Then they take those "today" scans and overlay them from the CT scan which actually has your internal organs. They want to make sure the computer and whatnot is all set up correctly so they are maximizing the radiation field, but minimizing the radiation to parts they don't want to hit (lung and heart). This was the hardest part because my hands were up in the air and my left hand and arm started to hurt from being in that position for so long. My arm started to get numb. Finally the techs came in and said that they were done doing all the mapping and they would start my first dose of radiation. Dr. Marquez was in the room while they were fine tuning the mapping. They scared the living daylights out of me. I jumped on the table. I asked them if I could move my hand at all. They said I could move my fingers, but not my hand. Dan ended up taping my hand to the handle that way I could relax my arm. It helped... a little, but my arm still hurt. He even said that my arm was ice cold. Um, yep! He started to tape up the right hand, but I said that that one was fine. Then they left and I had 10 minutes of radiation. They started with my supraclavicular area (side effect of radiation, a sore throat because the beams are going to hit my esophagus) and then from there, I don't know. The radiation doesn't take very long... it's all the prep. So after the first round, the techs came in and marked up my skin with permanent pen AGAIN... marking the field of radiation. They marked up my neck, under my arm and down the center of my chest. Once they did that, they put on this thing called a "bolus." It reminds me of ballistic gel. What I found out is that the radiation beams reach their maximum output at a certain depth. By putting the bolus over my body, it acts like a "skin thickener." I need the radiation to hit the skin, not a 1.5cm into my body. If the radiation goes through my normal skin, it will hit anything at maximum input of 1.5cm. Interesting. And the bolus they gave me is MINE. After the last session of radiation which was to the chest itself, the techs came in and took pictures of the markings they made with a camera (as in a little digital one). They have to document the field of radiation. Then I was able to get out of the compromising position they put me in. They promised me that next time it will be much faster.

As for the radiation machine. It's huge. It's open. What they have is me on a table lying flat. By my head is the actual machine that gives me the dosing. It's shaped like a C with me in the middle. The arm then rotates around me, so I never have to move. It looks similar to this.

If you keep your eyes open, you can see there are these little keys inside the plate and they move and I think that's what directs the radiation beams. Interesting, eh?

Next I was told to get dressed and then wait to go and see Dr. Marquez. Every Tuesday I will be meeting with her after radiation. We will discuss how I am feeling and what's going on with my skin. It took awhile for Dr. Marquez to come in, but when she did, she came in with a smile. Made me happy that I decided to go with her. She said that I lined up perfectly. I said that I had been practicing. She said that normally with people they shift a little bit, but I was just perfect. Beautiful... I did something right! ha! She asked me if I had any questions. I asked her if she felt any need for me to get a higher dose of radiation than she planned. She said that I looked fine and that her initial dosages for me was fine. My dosage is 5040 centigray (cGy). That's the total amount of radiation I will get over the course of 28 treatments... so 180 cGy's a day. She pulled up my chart and said that I didn't have any cancer and that this is preventative. Dr. Marquez had mentioned that she would do higher radiation if there was still cancer present in the node in my neck. But since there wasn't there was no need to worry about it. We talked about the PET scan... she said that I had some brown fat which is nothing in my neck. Then we talked about under the arm where I had some uptake, but that's normal after a surgery. Then we went into talking about the very mild uptake in my mid chest (anterior mediastinum). She didn't worry about it. She said that there was no correlation between that and the CT scan that was done at the same time. There's no tumor and there's no concern. Then proceeded to go into what exactly is 'mild' and "very mild"... does that mean cool? So it was all subjective.

The coolest part of the whole day is that she showed me my treatment plan. I got to see the images that were taken of my body. She showed me the quadrants they are radiating: the neck, the breast, under the arm and the area right next to that. Then she showed me the histogram which shows what organs were getting the most radiation. The most was my skin. Dr. Marquez then showed me that they were working really hard to avoid my heart and the aortic valve to my heart. They did a good job with that. However, the lung... they are hitting about 40% of that and when all is said and done, I will have about a 30% decrease in lung capacity. But on the up note, they won't have to do anything to my right lung. I'd rather be alive huffing and puffing than dead. I will most likely start to notice the decrease in capacity about a year from now. So I told her, now's the time to run that marathon. :) She said it's in October. God love her! We discussed the fact that she's radiatiating the nodes in the middle of my chest so I don't come down with inflammatory nodes. That would be a bad breast cancer. Get it all now. Oh yes, during the planning session, she said that she almost had to deflate one of my breasts. She said about 100cc's. I said, "Oh no, I worked so hard for these - all the sweat and tears!" But she talked with Dr. Thaker and they put their heads together so I didn't have to deflate. I didn't realize that the other boob would get in the way of the radiation beams. Goes to show you how much I preplan. So they figured out a way so the rad beams can get where they need to go AND I save my boob. So now I don't see her for another week.

Tomorrow my appointment is at 1p and should last 15-20 minutes. My last appointment is Friday, Sept. 14. Hopefully they will be more on time. I am now on a quest to find calendula. Wish me luck!

P.S. I know that Steve was there with me in that radiation room today.

Day 185 - Post Breast Cancer PET/CT scan & Dermabond

I'm cancer free!

I got the results of the PET scan back today. Happy to report that my scan looks good. The PET scan showed that there was no "activity" in the supraclavicular lymph node. That's awesome news. The CT scan also revealed the same thing. While I am overjoyed with this news, I am sort of reserved about the findings. I am not alarmed... yet... but just wondering what some of the other stuff in the report says.

For example on the PET scan it says: Very mild warmth is noted within the anterior mediastinum
not seen previously and of uncertain significance; and, Warmth in the anterior mediastinum is of uncertain significance. Attention on follow up recommended.

On the CT scan, the report reads: Anterior mediastinal soft tissue consistent with thymic
tissue is noted.

So what does it all mean? I really haven't a clue, but I did do some researching because I was a little concerned. Added to the fact that the nurse who called me said that with the PET scan, I'll have to talk to the radiologist regarding course of treatment and that she'll go over it with me. I do believe that she was talking to me about the lymph node and the dosing.  Back to the research...

Thymic tissue. I found that that tissue belongs to the thymus. The thymus plays a big role in childhood and adolescence. It peaks at puberty and then starts to fade away and become I believe fatty tissue. I think the clinical term used was "atropy." The deterioration of the thymus I guess has been linked to cancer and susceptibility of infection. However, I did read that after chemotherapy treatments, in adults, the thymus can be "reactivated." Also... I read... a residual thymic tissue is a remnant of the thymus gland mostly composed of fatty tissues. this is not considered anything abnormal. So I am not freaking out... yet. I don't think it's cancer. It couldn't be. The thymus is operable and can be taken out.

The PET scan stuff... that could be from the thymus as well. An oncologist posted this regarding thymic rebound: The thymus is a lymphoid organ in the anterior mediastinum. In general as you get older, it gets smaller. With chemotherapy or radiotherapy, the thymus shrinks. This is normal. After chemotherapy or radiation therapy, the normal thymus recovers. As it does so, sometimes its even larger than normal for a while. It can show up on CT scan and on PET or PET CT scan. This is normal, healthy, sign of recovery. The only danger is when the changes in the scan are misinterpreted as relapse. Your oncologist told you just the right answer. It sounds like you are in good hands. So I am not concerned. With more and more research, I am leaning towards a thymic rebound. It happens to patients dealing with lymphoma. The PET also concluded that: Foci of tracer uptake in the bilateral supraclavicular regions is fairly symmetric and likely related to brown fat. This can be avoided on future PETS with pre-study beta blockade.

With this PET scan, I was also a little more interested in some of the numbers given... SUV inparticular. I found that my main tumor was 8.1 on the SUV scale and that the axillary nodes were at a SUV of 4.5. Today the main tumor... well... is gone. The axillary was showing a SUV of 1.6. That's a good number. That number may be as a result of surgery... but it's under 3. SUV stands for Standardized Uptake Value. It's basically the output of how well you "glow" under the PET scan. Here's a link of what PET scans do: CLICK HERE. I found it interesting and helpful.

Oh yes, the supraclavical node went from the dimension of 1.5x1.0cm to 1.0x0.5cm... and it's more or less symmetric with the other clavical node on the other side. So that is very good news. The CT scan did show that I have a 7mm cyst on my liver. But cysts can come and go and it's not a concern. :) But other than that, it was a good test result. No cancer anywhere else. It's not in my head... literally. The nurse said that it was good news. And I trust her.

Now, as for my boobs... I am starting to peel. I feel like a snake. The dermabond which went over my incision to make it waterproof and my incision less likely for infection is now starting to peel off. Right now on my incision, I have a line which is the scab that went over the cut. As it's starting to peel off, I am now seeing my scar. It looks good. :) Supposedly it's supposed to start coming off 7-10 days after it's applied... but maybe Dr. Thakar sealed me up pretty good, or I haven't really cared to try and get it off.

Tomorrow I have more PT, Thursday a fill and Friday another PT appt.

Day 181 - Physical Therapy (cording) & PET scan

I've been busy! Busy with work, busy with kids and busy with going to medical appointments. So, let me catch you up.

Day 179 - More physical therapy. I had a physical therapy session with a different therapist, Tracy. She was very nice. She started me with warming up my arm on this pulley system where it stretches my arm up over my head. Then after that we moved to a private room. There I layed on the table and she started to massage the side of my body. Next Tracy moved to my arm. She stretched the cords starting from the arm pit - working down the arm. She followed the cord, which you could see in the crook of the elbow crease. That went on for several minutes. She would pull and twist, giving my cord a good stretch. Following the massage and stretching, I got to do the pulley again for a few more minutes and then I was done. The stretch felt good, but I didn't feel like it did any good. Tracy gave me a few more different stretches to do at home. She also told me how to stretch out the cord. That has been invaluable and is the main reason why my cording isn't has painful. On the way back to work I realized that my 4-Runner has an "oh shit" handle that is perfect for stretching while driving. So I've been stretching in the car too!

Day 180 - Testing & another fill. Today was my follow up PET and CT scan. That meant that I couldn't eat anything 6 hours before the PET scan. The scan was scheduled or 2p. So my last meal was at 8a. Anyone who knows me knows that I can become a monster when I am hungry. I left work at 12p for my first appointment. My first appointment was for my next tissue expander fill. When I got there, the waiting room was FULL. There was barely any chairs left. I sat down for not more than 60 seconds when my name was called. Donovan, Dr. Thaker's MA, called me back. He said that there must be some patients out there who must be upset that I got called back so quickly. I laughed. He told me that they were all waiting for the doctor and since I was only getting a fill with Jason, the PA, I didn't have to wait. Sweet! Score one for Holly. I do like Jason. He's so nice. Donovan was impressed with the fact that I remembered all the computer stuff he had to enter and ask. I answered all his questions before he even said anything... no medication change, pain scale, etc. Then he gave me a gown for me to change into. Jason came in and I asked him how he was doing. He just had surgery to get some stuff done for his achilles tendon. Jason had surgery in April and it wasn't healing correctly, so he got it taken care of. He even showed me a picture of it. Lots of stitches... ew! His wound looked worse than my wound from the mastectomy! In any case, we were going for 100cc's this time, but we stopped at 75. He thought that my skin wasn't responding well enough. He kept poking it to see if the color came back or if it stayed white. Then he moved over to the right boob. When I asked him why he was poking me, he told me that he was seeing how well the skin was responding. He had some concern, but when he poked me again, the skin was doing okay. Glad I stopped at 75... it was getting really really tight. When he was done, I asked him if I could schedule my next fill on Wednesday. He said that's not a problem. The general rule is to fill and then wait three days before the next fill. The reason: the skin stretches and then it needs some time to rest and recover... more like me. I need to recover! Ha! Nevertheless, the next two weeks I need a fill of 85cc's in order to get to my goal! Next week Jason won't be there, so who knows who I will have. Following my fill, it hurt to move. I felt so stretched.

Next on the list was my PET scan. That was scheduled up on the hill. For my tissue expander fill, that was at the Center for Health & Healing. I had to take the tram up. I got there shortly after 1p. I thought maybe if I got there early, I could get in early. Um, no. I read a magazine, some of my book, and even fell asleep. At 2:20p, I finally got called back. If you remember from one of my first posts, the PET scan takes about an hour of prep. First they have to get an IV in my arm. I told the guy that my right arm is awful for veins. So Matt, called IV therapy and then put warm packs on my arm to try and get a vein up and out. He couldn't. So good thing he called IV therapy. The lady came and got a line in me almost right away. In the meantime, they were getting me set up for the CT scan. I told them I couldn't have the IV contrast and that they had ordered the CT scan without contrast. They asked if I could take barium instead. I said sure as long as it wasn't the IV contrast. Then Amy came in! She was the one who did my first CT! I was so excited to see her. She is awesome. She told me that it's so nice to come into a room and see a smiling face. So she took my blood glucose reading and then administered my radioactive glucose. Then I got to wait for an hour. She said that she'd be back later on to give me the barium for the CT scan right after the PET scan. So I read a little more and then fell asleep. It was nice to rest. Then Amy came back in and gave me my wonderful barium drink I sipped it and read. Then finally I could sip no more. I was done otherwise I was going to puke. Then it was time to get my PET scan. It was so easy to just lie there. I was on the table for about 20 minutes. Then the CT scanner dude came in... I was so relaxed and when he talked to me he scared the living daylights out of me. It took a moment to compose myself. He apologized. After that, the scan was about one minute more. Then Amy came back in and she unhooked me... I had a wrap around my arms because I couldn't put my arms over my head. She said that she was in the room with the CT person and she heard me shriek when he came in. She said I was so relaxed. Amy also told me that I drank the right amount of the barium. She was worried that I didn't drink enough because I drank only half, but she said that my scan came out great and my body knew exactly how much it needed. Then it was time to go. I said bye and that I may see her again, as I have radiation scheduled in the upcoming month. She won't be taking care of me because she works in nuclear medicine.

After that it was a trip down the tram again. I was walking through CHH and I heard my name. It was Net, my first chemo nurse. She said that I was looking great and asked how I was doing. Nice to know all these people. It make going to these appointments like coming home in a strange strange way. Then I went and got in my car and spent more than an hour driving home in rush hour traffic.

Day 181 - More physical therapy. Today I had another PT appointment. This time it was with Shereh. She was sweet. I got there and warmed up. Shereh showed me another place to warm up my arm, the hand bike. Then it was time to get massaged and stretched. But before she did that, she measured me to see how far I could move my arm. The first measurement was lifting my arm straight up. At the beginning of the session, it was 120 degrees... an 40 degree increase from the first measurement at the beginning of the week. For the next measurement... lifting my arm up sideways, I measured 74 degrees, an increase from 60 degrees. By the end of the session, the first measurement moved to I believe 160 and the side one to 77 degrees. So the therapy is working.

Last night I couldn't sleep. My boobs were hurting. So around 1.30a I ended up downing three ibuprofen. It worked. My boobs feel great now. They aren't as sore now. Yee haw! I was thinking about it... for those women out there... here's what tissue expanders feel like... imagine yourself wearing a very uncomfortable bra with an underwire. Now imagine you never being able to take off that bra. That's what tissue expanders feel like - just an uncomfy bra.

On a different note, I sold over $100 at a garage sale! I am trying to get rid of all the baby stuff. So I am making some money to buy new toys! Hooray!