Cancer journey part 2... Why do we even have to have a cancer journey at all? I keep hoping the doctors will call me up and be like "April Fools! You don't really have cancer it was all just a big joke! Ha Ha!!" We'd all have a good laugh and then I would punch them in the face... twice... Yeah well that has not happened yet... So here we are continuing down this road.
Where did leave off? Okay so I was still trying to decide whether to have the lumpectomy, single mastectomy or the bilateral mastectomy. While talking to the surgeon about the lumpectomy, he explained that he would remove the tumor, which according to the ultrasounds measured about 1.9 cm or about 1 inch, then remove about another 2 inches around the tumor so that we made sure to have good healthy margins and get all the cancer out. After thinking about this for a while, I realized that they would be removing a 5 inch diameter piece of breast. Well let's get real here, I'm not that big! As much as I would like to think I am, I'm not. So basically, in my mind, the lumpectomy would turn into a mastectomy anyway. I reasoned to just skip the lumpectomy and get the mastectomy on the right side at least. With this decision came the decision to meet with Dr. Isom, the plastic surgeon, for a breast reconstruction consultation. We scheduled this first meeting for April 3.
April 1 and 2 was General Conference. I had been praying for comfort and understanding for so long and also praying to know what to do about surgery. Surgery still terrified me but at the same time I just wanted it to happen and get this cancer out of me. Before General Conference started, I prayed to know and understand what I was supposed to learn from this trial, how was I going to make it through, and how was I going to accept this life-changing diagnosis. While watching Conference, I was overwhelmed with a sense of peace and comfort. It seemed like every talk was directed to me and every single talk talked about putting my trust in the Lord and everything else would fall into place. I really feel like the thing I am supposed to learn from this trial is to put my faith and trust in the Lord and lean not to my own understanding. Now that is easier said than done but I am trying. I know that my Father in Heaven knows me and knows what I am going though. He will be there for me through it all and I can feel the Savior's love in the little tender mercies I have had so far. I still had no idea what I was supposed to decide about surgery or how I was supposed to deal with all of this, but I did know that I needed to trust the Lord and know that everything was in His timetable and what He had in store for me to learn would be something great and something I would not be able to learn any other way. So whenever I start feeling down, I remember to trust in the Lord and all things will work out. This realization gave me a great sense of hope at this time.
April 3rd was another doctor appointment day. (I will have many of these days.) First I met with Dr. Isom for the first time. This was still so unreal. I mean I never in my wildest dreams though I would ever be meeting with a plastic surgeon talking about breast implants and breast reconstruction surgery, our anything like that but there I was. Dr. Isom and his PA Dr. Fullmer were so nice and supportive. They gave me every option and possible outcome and everything. I could not believe how luck I was to have landed such great doctors as Dr. Anderson and Dr. Isom. Dr. Isom answered all of my questions and explained the process I would go through.
The first phase of the reconstruction would be to construct a casing of AlloDerm (an acellular tissue created from donated human skin) around tissue expander's. The AlloDerm will aid in repairing damaged tissue by providing a foundation for new tissue growth. As healing progresses, the AlloDerm will be transformed into living tissue that looks and functions like my own. The breast tissue expander is an inflatable breast implant designed to stretch the skin and make room for a future, more permanent implant. These tissue expander's would hold the shape of the breast as I went through chemo and the Allodrem would create the casing and strengthen my skin to later insert the implants in when all of this was over.
The second phase of reconstruction would be to insert a saline solution into the expanders to expand the skin and create the size I wanted for the implants. This would take place a little before chemo while healing from the surgery and then as well after chemo until I decided I was where I wanted to be. (DD's here I come! Ok probably not...)
The third phase would happen after chemotherapy and after I was cleared as cancer free. That is when I would go back in for surgery and have the permanent implants placed. Really? Am I really talking about getting breast implants? Aren't those only for movie stars getting boob jobs and Dolly Pardon and people like that? I have really had my eyes opened by this whole process and have realized that breast reconstruction surgery is really a great blessing to many women including me now. And it is actually more common than you would think. There are a lot of great women that have breast augmentation and reconstruction done and they are not vain or anything I would have typically stereotyped into that category. So yes eventually I will have breast implants too.
The next phase will be to have fat grafts and injections into the breast area to shape and give a more natural look. I have had many people joke with me and tell me they will gladly donate their fat stores to help me in my breast reconstruction. They tell me they have plenty to go around and I could have any size boob I want from them. We all have to laugh at that.
The final phase is to reconstruct the nipple by cutting the skin and folding and forming a nipple. Then tattooing an aerola around the newly constructed (fake) nipple. Oh great I was thinking, I get fake boobs and a tattoo! All my dreams have come true!
This was all a lot of information to take in and it all made me wonder if it was all worth it or if I didn't want to do any of it and just had prosthetic boobs or nothing at all. There were entirely too many decisions to make and they were all decisions I never imagined I would ever have to make. One thing Dr. Isom explained was that he could do the AlloDerm and tissue expanders at the same time as the mastectomy. This way, we would be able to preserve all my skin as well as my nipples. By doing the nipple and skin sparing surgery, there would be less scaring and by doing it all at once, I would be able to cut down on one surgery. He also said that we could just do reconstruction on one side and get it as close to the other side as possible or if I decided to do both sides, he would just match them to each other. He said sometimes the results are better if you do both at the same time but you don't have to. Dr. Isom said he was booked out for about two months but if I decided to do this he would gladly come in on his day off next Wednesday. We thanked him so much for being willing to do that and we left his office with a lot more to think about.
My next appointment was with the surgeon, Dr. Anderson. After getting the results from the left breast biopsy, he wanted to know what we wanted to do. I told him for sure I wanted a mastectomy on the right side but I wasn't sure about the left side. We discussed the possible results of the genetic test. If the result of the BRCA genes came back positive for a gene mutation, he would definitely recommend the bilateral mastectomy as well as a hysterectomy after all is said and done. However if the test comes back negative for the mutation, doing the single mastectomy would probably be just fine. But waiting for the results to come back from the genetic test would take another month. Dr. Anderson said it would be fine to wait for the results if I was unsure but there was no way I wanted to wit another month and let this cancer multiply and spread to the rest of my body. I needed to make a decision now. As you may know, I am a terrible decision maker. It takes me forever and I would much rather have someone else make the decision for me. So having a positive genetic test come back would have been so easy but I couldn't wait that long. I was kind of freaking out in my mind because I didn't want to choose. I didn't even want to have to choose. I didn't want to think about it. I also didn't want to make the wrong decision and regret it later. Dr. Anderson said it was up to me and said he would give us a minute and his nurse would come in and see what we decided. After he left I didn't know what to do. Russell and my mom were there with me so I asked them what I should do. They said it was up to me and they would support me and help me through whatever decision I made. I told them I didn't know what to do and I didn't want to decide. When the nurse came in I was sobbing. I was so embarrassed but she was awesome and said she would come back in a minute. I was sobbing because I knew this would change my life and I knew I would not be the same. But most of all I was so worried that I would not be able to care for my kids after this. I was sobbing because I thought I would not be able to hold Charlotte for a month after surgery. That is a long time. The thing that is still bothering me so bad is that I just can't understand how the things that have fed, nurtured, comforted, and basically given life to my babies was now trying to kill me! I mean what did I do wrong? In that moment of despair, I knew that I NEVER wanted to have to go through this EVER again. I did not want to give this cancer any chance of coming back. I could not handle going through this emotional roller coaster again. It was right then that I decided to go through with the bilateral mastectomy.
The nurse came back in and we got all of the paperwork signed and ready to schedule surgery for the next Wednesday, April 12. During surgery, I would have the works done to me, Skin and Nipple sparing Bilateral Mastectomy, Sentinel Lymph Node removal and biopsy, AlloDerm placement with tissue expanders, and a Port-A-Cath, or Port, placed in the vein right under my collarbone. This was the first time I have had surgery so it was go big or go home right? (I would rather have gone home...). Once the decision was made and surgery was scheduled, I felt much better about my decision. I was still nervous, don't get me wrong, but I was at peace with the decision.
Since it was was Spring Break for the kids, and I had nothing better to do except wait for surgery, we decided to take one last trip to St. George. Before heading out of town, the kids and I enjoyed Baby Animal Days at the American Heritage West Center. It was such a beautiful spring day and the cute baby animals really helped take my mind off the inevitable. While in St. George we had a great time with family and enjoyed every minute.
We came back home on Saturday night and then went to church on Sunday. This week was the week my ward was fasting for me. I know fasting works because I have fasted for answers to questions and things in the past and gotten the answers and comfort I have needed at that time. Those times however were always personal fasts for myself. No one else has needed to fast with me. This was the first time I have ever needed the faith of others and had others fast for me. It was seriously a very humbling experience. To know that others were praying and fasting for me was so awesome. I could totally feel the Spirit comforting me at this time. The strength and faith of many helped me that day. It seemed like all of the stress of the last month just kind of simmered down. Cancer was still at the back of my mind but I was not as concerned about it as before. I knew that if I put my trust in the Lord, He would help me get through anything. I had people rooting for me and many people willing to help whenever I needed it. For this I was so grateful. It is terrible that it takes something like cancer to make you realize what great friends you have and how many people really do love you and want the best for you. That is one thing (among many) that this fast helped me realize. This ward fast was exactly what I needed.
Monday April 10th I had the genetic test done. The geneticist went over all of my family history of cancer which is one person, my Grandpa Burgess had Multiple Myeloma, that's it. It was a pretty simple family tree to draw. Then after talking about my age, and the Triple Negative Cancer I have, we discussed the possible results of the test. The genetic panel tested for over 80 different cancer causing genes but specifically we were looking at the BRCA 1 and 2 genes. If there were mutations in the genes, this would give a positive result and that would mean the mutation was most likely responsible for the development of the tumor. If this was the case, the BRCA genes are also linked to not only breast cancer but ovarian cancer as well and we would be looking at a hysterectomy in the future. If the results were negative for the gene mutation, it meant that the genes were normal and everything was fine. In that case, we have no idea where the cancer came from other than some outside source or luck of the draw. Given my age, type of cancer, and no family history of cancer we kind of assumed I would have the gene but we didn't know for sure so the test was taken. The test was a simple blood draw that was sent to a lab in a different state. I would get the results back in about a month.
Also on Monday I met again with Dr. Isom to do a final consult before surgery. We talked about what was going to happen on Wednesday and he took some measurements. In the last month, I have had doctors exams, ultrasounds, mammograms, chest x-rays, biopsies, and even more doctors' exams done on my breasts. It seemed like pretty much everyone in the hospital and medical field had seen my boobies so there was no more shame. It was like "Oh you want to look and feel my boobs well here you go..." Like no big deal right? Yeah until the plastic surgeon brought out the camera and wanted to take pictures so there would be a before and after and so he would know how to make the final product look. Talk about embarrassing. He had me stand up with my arms down to my side. So I am totally embarrassed so I am all tense and he tells me to relax. I just laugh at him. In my head I'm thinking "Yeah right doc, I don't even let my husband do this" Finally the picture show was over. Don't get me wrong it was entirely professional and the PA Jenae was in there the whole time but it was awkward!
Finally the day surgery arrived. One month after being diagnosed with cancer I was finally going in to have the beast removed from my body. Sorry cancer no more free ride, you are outta here! My parents came up the night before to stay with the kids while I was in surgery and also stay and help while I recovered. On the morning of April 12th Russell and I arrived at the hospital at 7 am to get prepped for surgery scheduled to start at 8. My nerves were on high alert and I could not stop shaking. With this being my first surgery ever, I had no idea what to expect. As we were getting ready the nurse was asking me questions about my health history and when they found out this was my first surgery, they laughed and said "You go big don't you. Just get everything done at once huh." I said yeah I'm an overachiever.
Here I am in the surgery prep room waiting for surgery. I had just gotten my IV in which for some reason took twice to stick. They finally got it in the inside of my elbow which has to be the worst and most uncomfortable place to have an IV. Those awesome orange and white sock things are compression socks. They are the best things in the whole world!! They just pump air in and out of those sock and your legs get a massage while you lay there. I wanted to take them home.
The first person we saw besides the nurses was the radiologist. He came and injected the sight around the tumor with a radioactive substance and a blue dye (methylene blue). This radioactive dye will travel to the lymph nodes nearest to the tumor and those lymph nodes are the sentinel lymph nodes. During surgery, Dr. Anderson would locate those lymph nodes and remove them. If they turn out to be cancerous, he will remove more, if not then that means the cancer has not spread. We were hoping the lymph nodes would be fine.
Next we met the anesthesiologist and talked to him. I told him that the only thing I cared about was that I would wake up. He told me I would be fine. He also laughed and said he didn't charge to put people to sleep but he did charge to wake them up. We told him we would pay whatever it took.
Finally we met with Dr. Anderson and Dr. Isom. They would be working together on this surgery and they talked to us together. Dr. Isom drew on me with a surgical marker all of the possible places for the incisions and whatever other "mapping" techniques he and Dr. Anderson would need. Then it was off to the OR.
They wheeled me into the bright OR and I climbed onto the operating table ready to take a long nap. While they were prepping my IV for the anesthesia, the nurses were talking to me about St. George and Zion and then they told me good night and I was gone.
The next thing I remember I was waking up in the recovery room. I looked around the room and groggily said to the nurse "Well that didn't take long." She just laughed and said, "Well actually it is 4:30 in the afternoon..." I just groaned and said "Really?" Almost 8 hours! I was in surgery for 8 hours! That was two hours longer than they originally said it would be. All I could think was "Wow!" I originally thought the surgery would be a couple of hours at the most boy was I wrong.
While I was in surgery, Russell was just pacing the floor. The poor guy, 8 hours is along time to wait. Luckily, Rochelle was able to stop by at noon and have lunch with him and kind of hang out with him for a while.
From the recovery room, they wheeled me into my hospital room where Russell was waiting for me with these:
The little fart knew I was terrified of hallucinating and seeing pink elephants when I came out of anesthesia so what did he do? He went and bought me a pink elephant so I would see it every time I looked around my hospital room. It was a funny joke the whole time I was in the hospital. All of the the nurses that came in to check on me asked about it and thought it was so cute. I absolutely loved the beautiful flowers from Traci.
It was good to be out of surgery and have that behind me. Now I was on the road to recovery. I was still too nervous to actually look at the area of the operation. I didn't know what to expect or what I would look like. Well it didn't matter anyway because I couldn't see the area because of all of the bandages. Along with the all of the bandages, I also had four tubes coming out of me. Two tubes were literally coming out of my body. Theses were the drains. I had one drain coming out of each side and these drains made it possible for any fluid to drain out rather than stay inside and continue to swell and create a possible infection. The other two tubes were from two wound vacs that were placed over the incisions. These wound vacs also aided in the prevention of infection as well as keeping the incisions closed and reducing the scaring. All of these tubes were super necessary but also super annoying. There were constant tubes getting in the way every move I made.
The anesthesia was slowly wearing off which made me really tired and I just wanted to sleep. I also wanted to eat because I hadn't eaten anything since the night before. Every time I took a bite of something though I would get a wave of nausea. Also my arms felt really weird too. It was like they were asleep and no matter what I did to move them around to wake them up, they just kept tingling. Come to find out my poor arms had been strapped down out above my head for the entire 8 hours of surgery. No wonder they felt sleep. During surgery they also placed a catheter which was really nice because I could not get up to go to the bathroom even if I wanted to. Every time I tried to even sit up the room would spin. This anesthesia stuff messes with your head.
I was starting to feel pretty good after a while and was able to eat some applesauce and water. Then Calen and Rochelle came up to see us. I felt pretty good while they were there and we were all just talking and telling stories about the day. Then I got super tired and could hardly keep my eyes open. Calen and Ro noticed this and decided it was time to go. After they left, things got really interesting.
I started getting really nauseated so Russell was going to go find the nurse to see if there was something I could take to get rid of that feeling. Just as he opened the door to step out, I yelled "Wait!", grabbed the puke bag and passed out. The next thing I remember is screaming and waking up to Russell yelling at me to wake up, puke everywhere (and I mean everywhere) and my room full of every nurse, CNA, and staff in the hospital. I guess what had happened was I blacked out and puked everywhere. Russell said my eyes rolled back in my head and I started shaking. He thought I was having seizure. He said he tried to wake me up with a sternum rub and I was not waking up so he didn't know what else to do but push the Code Blue button. Just as everyone was rushing into my room because they though I was dead, I woke up. Russell said he had never seen me do anything like that and he was freaked out. He apologized for pushing the Code button but he didn't know what else to do. They said it was okay and cancelled the Code.
I was in a daze and had no idea what was going on, all I knew was that I was covered in puke and the oxygen tube in my nose was full of puke too. I took that thing out of my nose and tried to wake up enough to think about how to get cleaned up. The nurses were super great and helped my into a new gown, changed my bedding and changed the bandages all while I was in a daze trying not to pass out again. I tried to help get dressed and off the bed but I could not even move my arms and every time I moved or looked around the room was spinning. Finally I was cleaned up and they nurse laid me back down flat and the room finally quit spinning and I fell asleep. That was a little intense for me and especially for Russell. He told me to never do that again. I said okay. As I was thinking about this experience, I realized that I have done this before a couple of times. I seem to pass out when I throw up. I have done that at least 3-4 times that I can remember. Russell decided it must be a vagal response or something that all the blood rushes out of my head when I go to puke and I pass out. Luckily I have always come back to life. We decided this will be something we need to be aware of when I go through Chemotherapy.
We spent the night in the hospital got some sleep in between being checked by the nurses every couple hours. During the night the phlebotomist came in to take some blood. She seemed to struggle getting the needle in and after a couple tries got it in a vein in my hand. What is with these people and sticking me in the most uncomfortable places ever. After she left, I had a dream (at least I think it was a dream to tell you they truth, I really don't know) that she came back in and said she didn't get enough blood and would have to poke me again. I was so mad. It seriously was a nightmare. The next morning I really didn't know if it was a dream or real. When we got home later, I noticed a bandage on my foot that I hadn't seen before and wondered if my dream was really a reality and I didn't know it. Did I tell you anesthesia messes with your brain...
The next morning I felt much better. I was able to eat breakfast with no problem and I was able to get up and walk around.
I was pretty slow at walking but it felt good to move around. It is amazing how much of your upper body you use to walk! I was still pretty sore from surgery and could hardly move my arms and my chest muscles felt like they had received a beating (because they had). But I was able to get up and move at turtle speed. That day Dr. Anderson came in to see me. He told us that they surgery went well other than the fact that I am a bleeder. He said the tumor was pretty contained measuring about 2 centimeters and the left breast looked just fine. When he was doing the lymph nodes, he noticed that pretty much all of the dye went into one lymph node. Usually lymph nodes radiate in the 1000 zone but this one lymph node was 2500. He had never seen one that high. So he felt like if this lymph node was cancer free, all the rest of them should be as well. He took out 4 sentinel lymph nodes and thankfully all of them came back negative for cancer. The cancer had not spread. What great news! Because of the large size of the tumor and the small size of me, he said we did not have very big margins on all sides of the tumor but the margins we do have are healthy. More good news. Even though I had the mastectomy, we may still have to do radiation because of this though. Dr. Anderson said he would have the full pathology report when we met with him for a follow up on Monday. Dr. Isom also came to see me that day. He also said everything went well in the surgery. He said I was good to go home if I wanted to and gave me a prescription for an antibiotic and Ibuprofen 800. In the hospital I really only needed Toradol for pain which is basically Ibuprofen in an IV form. Dr. Isom was amazed and said I was pretty tough. To tell you the truth I really didn't have much pain except for my arms being asleep and just stiff and sore. The catheter and IV was removed and I was able to go home.
Russell and I arrived home just as the kids were getting out of school. They were so happy to see me and I was so happy to have lived through surgery and was able to be home with them too. The next few days I pretty much just laid around doing nothing. I couldn't even shower because I could not get the wound vacs and bandages wet. I was still sore and could not move my arms up very far. I could not lift anything either. This was hard because I wanted to hold Charlotte but I could not lift her. Thankfully I could sit in the recliner or bed and hold her and feed her a bottle when some one would set her in my lap. I had a special pillow to go over my chest as I held her so that she would not bump the incisions. This pillow was the best thing ever.
Here I am just laying around. I know I look like crap because I couldn't wash or do my hair.
The wound vacs and drains were really annoying. I was constantly toting them around and looking really weird with tubes coming out of my shirt. I also had to empty the drains and measure the fluid coming out. Yeah that was gross. One day Emily's teachers, Mrs. Nielsen and Mrs. Kendrik, from school came by and brought us dinner. (You know your kid has a great teacher when they take a special interest in not only the student but their family as well. We love these women!) Along with dinner, they brought a salad with strawberry vinaigrette dressing. I could not even look at the dressing because it was the same color and consistency of the stuff coming out of my drains. (Sorry for the graphics.) Everyone else ate the dressing and I am sure it was really good but I just couldn't do it.
I was so glad that my parent were there to help us at this time because I really couldn't do anything without getting really tired.
That weekend was Easter and since I was still recovering, we had a nice little family Easter hunt at home. The kids had a blast and didn't seem to mind one bit.
By Monday the wound vacs were really starting to bother me. The pressure they put on me combined with the swelling made me feel like there was an elephant standing on my chest. I felt like I was having a heart attack because pressure in my chest was making it hard to breath. Finally, with many rests in between, my mom was able to wash my hair in the sink and Russell helped me carefully take a bath without getting the top part of my body too wet. I felt much better after getting clean and much less stinky! Then it was off to the doctor.
First we met with Dr. Anderson. He took off the bandages from the Lymph node incision in my armpit and the bandage over the port. He said the stitches would heal in another week or so. He asked me how I was feeling after surgery and I told him I was feeling fine except for feeling like an elephant was standing on my chest. I told him it felt like I had just had a baby and my milk was coming in full force and there was nothing I could do about the engorgement. He just laughed and said that was probably from the suction of the wound vacs and a little bit of swelling. Then he gave us my pathology report. More good news! All of the lymph nodes came back negative for cancer. The tumor was well contained measuring 1.9 cm. So (drum roll please...) my cancer was Stage 1!!!! I would rather have no cancer but Stage 1 is the next best thing. I am so glad we caught it early before it had time to metastasize and spread to other parts of my body. Now even with Stage 1, I still needed to meet with an oncologist and set up a treatment plan to totally eliminate any traces of cancer in my body. Dr. Anderson said he would send the pathology report to the oncologist and they would be calling me soon. Dr. Anderson said he would not need to see me again until everything was done and then he would remove the Port. We left the doctor's office feeling very hopeful.
Next we met with Dr. Isom. He is the doctor that would be taking care of me now and making sure the incisions were healing appropriately. This visit was the big unveiling of the surgical area. I also told Dr. Isom that I felt like an elephant was standing on me so he said, "Lets take those wound vacs off." He had me lay down and he and the PA took the wound vacs off. This was the first time I saw the cuts and scars and everything that had happened to me. To tell you the truth, I was pleasantly surprised with the results. I imagined it looking much worse. The doctors were able to save all of my skin and nipples and with the tissue expanders in, everything looked pretty normal except for the 3 inch incision lines. In the end I will hopefully only have those two scars. There was some bruising which is to be expected but those will go away with time. The right side looked a lot worse than the left side because that is where they did the most work. There is quite an indention where the tumor was because they had to take out quite a bit of fat and tissue around that area. In the end however that will all be filled in with fat grafts. The right side also looked bad because I have a big blue tattoo that looked like an ink splatter. I was kind of shocked at that but Dr. Isom said that was from the methylene blue dye they injected. He also said that it would go away with time as well. Phew no blue tattoo... Overall I didn't think I looked too bad. I was glad that I decided to go with reconstruction rather than do nothing. That would have been a real shock.
The moment the doctors took the wound vacs off I immediately felt the pressure come off my chest. It was great! Dr. Isom wanted to keep the drains in for another week until the drainage slowed to around 25-30 ml a day or less. I was still getting 30 ml every 4-5 hours. So I went home with two tubes sticking out of me instead of four. Definitely an improvement but still not ideal. I was told I could still shower even with the drains I would just need to hook them on to a lanyard or something around my neck so they didn't dangle down.
Did I mention that the drains were so annoying? Well they were. The worst part was that they went into my body right at my bra line. This made the tubing rub against my skin every time I moved. The skin around the drains' tubing was so sore and irritated. We tried to wrap it with gauze and that helped some but it still rubbed and itched. Then anytime the tubing got pulled even a little bit, it felt like it was being pulled out which also hurt. I had to sleep in one position all night so that I wouldn't pull the drains. And I had to be creative in hiding the drains under my clothes so that I didn't gross out anyone that saw me. Anyway no more complaining, the drains served their purpose well and I was thankful for no infection.
After being freed from the wound vacs and showering, I was feeling much better. I was able to attend Emily's piano recital and Colby's soccer games. I was still restricted on lifting anything which was okay because I couldn't lift anything heavy even if I wanted to. I was really glad that Russell and my parents were around to take care of Charlotte because I could not carry her. Anytime someone made me laugh I would tell them to stop because it made my pectoral muscles hurt. Also my body climate was totally off it seemed like. We joked that the doctors put ice cubes inside the tissue expanders rather than warm saline. It seemed like I was always cold. It was like taking out all of my breast tissue took out all of my body's insulation too. Anytime I would shiver my pec muscles would hurt too. Finally though the muscles healed and my body temperature went back to normal. Other than being cold and tired, I was feeling pretty good but getting restless at home.
After Colby's soccer game on Saturday, I decided we (or I) needed to get out in the warm sunshine and enjoy nature. We packed a lunch and headed up the canyon to the Blacksmith Fork AJ Park.
The park and sun was just what I needed and the kids had a good time running around as well. Because we had so much snow this winter the water table was really high. The park (and everywhere in the canyon) was full of water. As long as we stayed on the cement portions of the park though we were all right.
The kids had a good time with Grandma and Grandpa Morwood. They enjoyed looking into the pond and seeing the little fish. They also loved swinging on the swings and just running around. As I sat and basked in the sun and fed Charlotte a bottle, I loved hearing them run around laughing and talking as kids should. I was happy to be alive even though I still had the annoying drains.
I got the preliminary results of my genetic test on April 19. I tested negative for a mutation in the breast cancer genes BRCA 1 and 2. This is great news because it means my kids and sisters don't need to be tested. But it also means they don't know where my cancer came from. The only thing I can see is that there are 8 women in my family and I was the lucky one! You're welcome sistas! I will get the final results of all of the genes tested in a few more weeks. When the geneticist told me the results were negative, I was kind of surprised. I really thought I had the gene mutation because where else would this cancer come from? Given my age, the type of cancer, and family history (or lack of), both the geneticist and I were surprised by the results. But hey I was not going to argue. I was so glad to be negative for the breast cancer gene mutations.
Monday April 24 I met with my oncologist for the first time. My Oncologist... really... how did this happen? I was a little nervous and I hoped that I would like him and feel comfortable with him. Dr. Sliesoraitis (or Dr. S) came highly recommended by both Dr. Anderson and Dr. Isom. When we met him, I felt good about his expertise. I was really impressed that he had studied up on my medical history. He had notes on my pathology reports and surgical reports from the very beginning of my diagnosis. I was also impressed with the way he explained my plan going forward. He even wrote down everything he was saying in note form on the paper on the medical bed:
He went over a lot of information including chemotherapy treatment plans, possible radiation, survival rates and recurrence rates. He said based on my type and stage of cancer there were two chemo treatment plans. The first one is anthracycline based chemo. This chemo has pretty crazy possible side effect like heart failure and leukemia. Yeah not sounding good Doc. Dr. S said that was not really the one he wanted to put me on. (Thank you!) Instead he recommended the second option a Non-Anthracycline based chemo. The chemo treatment he recommended was Taxotere and Cytoxin or TC therapy. This did not have as bad side effects but it is not without side effects. Some of the side effects we talked about were hair loss, nausea, fatigue, neuropathy, and an increased risk of infection due to low white blood cells, and that is only a few. Basically Chemo will wipe out all of the fast reproducing cells in my body along with the nasty cancer cells. It is going to be a rough road ahead but one I will have to face head on. I will receive TC chemo treatments every three weeks for four cycles. So four treatments and I will be done in three months! As much as this sounds crazy, I thought that was really good news too. I was dreading that I would have to go through 6 plus months of treatments so when he told me it would only be three I was so happy. I asked him why we had to do chemo if we got all of the cancer out with the mastectomy and the lymph nodes were not affected. He said the reason we still do chemo is to catch any rogue cancer cells that may have entered the blood stream around the tumor and we don't know about it. Chemotherapy will also reduce the risk of recurrence later on down the road. I definitely do not want the stupid cancer to come back so as much as I hate to say this, bring on the Chemo! I will not start chemo until the drains are out and I am healed from surgery.
As far as radiation goes, I might not need to do it because I had the mastectomy and the margins looked fine. It is still kind of up in the air though so we will decide later once we talk to the Radiation Oncologist.
Over the next couple of days I met with a nutritionist and an oncology nurse to be informed on everything to expect from chemo. Chemo 101 was a lot of information to digest. The nutritionist was able to talk to me about the ways to stay healthy during chemo. He talked to me about some of the ways to deal with the side effects of nausea and anything else that my chemo messed up digestive system could throw at me. The nurse manager talked to me about the process of chemo, what possible side effects I could get and how to prepare for my first round of chemo. They were both very nice and helpful. Now if I can just remember everything they said. Wow I never thought I would have to deal with this.
On Thursday April 27, I saw Dr. Isom again. During this visit, he was able to remove the JP drains from my body. It felt so weird! He just pulled the the tubing and pulled some more and the tubing just kept coming out. It was longer than I thought. The feeling was something else. I can't describe it but it was like a snake coming out of a hole. I was so glad to have those drains out and be back to somewhat normal. The crazy thing was that the doctor just put a little band-aid over the hole that the tubing came out of. I thought that was strange because there was these holes in my sides and he didn't even stitch them up. Dr. Isom said they would fill in and heal on their own.
Along with getting the drains out, I got my first saline fill in my tissue expanders. I asked the doctor if it was going to hurt and he said that I shouldn't feel a thing. He pulled out the big needle and I started to get nervous but when he and the PA poked the needles in, he was right, I did not feel anything. That is the craziest thing about having the mastectomy. All the nerves in my breasts were severed and I have no feeling at all in them. It is really weird. I asked if I would ever have feeling again and Dr. Isom said I probably never would. Anyway they began filling each side at the same time with 60 cc of fluid. I was watching and it was so cool. It looked like they were filling water balloons and I could see them getting full. I now have 300 cc's in each side. I will probably do a couple more, we will see.
The incisions were still covered in scabs and the right side had redness round the nipple area. Dr. Isom was not really sure if that was just the skin adhering to the AlloDrem or an early sign of infection. I was not showing any other signs of infection such as a fever but to be on the safe side he prescribed another antibiotic to eliminate any possible infections. Some more good news is that Dr. Isom said it was okay for me to pick up and hold Charlotte! My mom was heading back home and we were worried about what I would do with Charlotte while Russell was at work. My mom handed Charlotte to Dr. Isom so he could feel how big she was (she is getting so big!!) and she just melted his heart! He said that I would be fine to hold her. I am still going to be careful and take it easy because I am still a little weak but I am glad to be able to take care of my baby and all my kids again.
The doctors want me completely healed before beginning chemo treatments. Dr. Isom thinks that will be a few more weeks. So we have scheduled my first treatment for May 11. We will see how that goes.
To be continued...
