March 31 - Port Surgery

                Today was the final ultrasound. The doctor told us that we would be set for egg retrieval on Thursday. In order to get ready for it we needed to give me a trigger injection that night. The timing of that injection was very important because exactly 36 hours after is when the retrieval needed to be performed. They didn't give me the time I needed to take it yet though, they had to check the schedules for Thursday so that they could plan my surgery for the right time. Heidi the nurse would call me that afternoon and tell me exactly when the injection needed to be done.

                The last thing we needed to do before we could head back to Logan was a blood test. They wanted to double check on my hormone levels. Having had many blood tests at this point I knew they only took a few seconds. Unfortunately the person having her blood drawn before me had invisible veins and it took 30 minutes before it was my turn. Normally this wouldn’t be a problem, but today, we had to be back in Logan for a surgery and my check in time was 9:30am. By the time my blood was drawn it was already 8:30am. There is no way to make the trip from Salt Lake to Logan in an hour, but we were going to do our best. I made a quick call to Logan Regional to let them know we were running late, and then we did our best to fly to Logan without getting pulled over.

                Chase did an excellent driving quickly and inconspicuously. I still had to give myself my last set of daily hormone injections. They had to be giving at the same time every day and we didn't have time to pull over. All of my training had led to this moment, as I gave myself 3 injections, going 80 miles per hour down the freeway. Probably the closest I will ever get to a Mission Impossible stunt.

March 30

                Today we spent some time catching up on homework (Chase), working on this blog (Kayla), and spending time with family. We had lunch with Chase’s sister at Ikea, where she works, and then explored the store for a while. Chase had never been in Ikea. It was fun to look around and imagine what our house could look like someday. Even if that feels like it will be a while until we are free from school and can start looking to settle down.

                The evening was busier than expected, with both a lacrosse game for Chase’s younger sister, and a birthday dinner for my brother. It is so strange to see them both so grown up. Makenna’s game went very well and they won their game by a wide margin. Logan’s birthday dinner was an exciting and new experience for my family. Logan asked to go to a sushi restaurant. No one in my family has much experience with it, but Logan has become a huge fan of Japanese comics. We asked the waitress to choose what types of sushi we got, since none of us had ever ordered it before, and it turned out to be one of the most fun things we have ever done. Even Bryson, the notoriously picky tried and enjoyed it.

                With some fun memories, and feeling a little more relaxed, we went to bed and tried to prepare ourselves for the busy week ahead. 

March 29

              Today we had another ultrasound to check and see how I was responding to the medication and to get a timeline for retrieval. Based on the results that day, we weren’t quite ready yet, and they wanted to see me back on Tuesday for another ultrasound. Unfortunately this was the same day we had scheduled the port surgery. In order to make it to both appointments we would need to schedule the ultrasound as early as possible and then drive straight to Logan for the surgery. In order to save us an extra trip we decided that it would be better to just stay in Salt Lake on Monday, go to our early Tuesday appointment and then drive home.

                We celebrated an early Easter with the Spencer’s that afternoon. Complete with egg decorating, lots of food, and even more laughs. In order to help Elder Spencer feel like he was part of the celebration we even decorated an egg in his honor. Getting the whole family together for a picture with it was not quite as easy as it sounds. It is so fun to have such wonderful in-laws.

               

  The rest of the evening Chase and his father worked on our car a little. It had been in to the shop to fix the broken door, but there will still a few more things, like fluids that needed to be topped of before it would be able to make the trip to Logan. Chase so rarely gets time with his father, so I was glad to give them those few hours. 

March 28 - Caving

                Today was the last Saturday I would have before chemo, if everything went like we have planned. The goal is to finish the fertility preservation and have the chemo port put in next week so that we are ready to start chemo next Friday. If that was the case we needed to do something really epic to commemorate it. Luckily we know a guy.

                One of my good friends from school is also an experienced caver. Meaning he climbs into holes in the ground to see how deep he can go. He has invested a pretty serious amount of time and money into getting good at it to. He offered to take Chase and me on a caving expedition if we were interested. Not knowing what we were getting ourselves into we took him up on the offer. We figured we had tried so many other outdoor adventures in those mountains this one seemed like a good thing to try.

March 27

                Chase got his exam results back today and it turned out better than we could have hoped! He claims that it was more a blessing than any merit of his own. I still think that I am married to a secret genius, but I won't argue with the fact that there was some help. On a difficult exam he had only begun studying for the night before, he only missed one question.

                That night was our ward luau. It turned out to be a ton of fun. Chase and I ran to the DI to buy some Hawaiian garb for the party. We had more success than we expected and Chase got a fabulous pineapple shirt and I found a nice Mumu. Unfortunately we forgot to take any pictures. I'll see if I can find some from that night, but until then just know that we looked pretty great. It was also fun to play games and have a good time with so many of our friends.

March 26

                 This morning we were back in Salt Lake for another follow up at the fertility clinic. Because the process is pretty time sensitive they like to track how I am responding to the medications so they know exactly the right time to do the retrieval. Luckily those appointments are pretty quick. After seeing how things looked the doctor had me increase the dose of one of the medications. Overall she was pretty happy with how things were going. Because I am young and healthy they are very optimistic that everything will turn out well.

                After that appointment we went to the Huntsman Cancer Institute. We had an appointment with a lymphoma specialist there. She has been treating lymphoma patients for 20 years and we were really interested to get her thoughts on treatment options and my situation in general. After our conversation with her, we felt even better about the treatment option we had already been leaning towards. Even though ABVD took twice as long, it was less likely to cause long term side effects. The specialist had used both methods in the past and is now using ABVD almost exclusively. She was also much more optimistic about my chances of not losing fertility, and my ability to undergo chemo without being too sick. This was encouraging, and has helped me be less afraid of the upcoming 6 months of treatment.

March 25

                Today at work a couple of my coworkers decided to commemorate the loss of my long hair by wearing wigs. I had told them on Monday that I was going in to get it all chopped off and they wanted to make sure that I knew they were supporting me. I'm pretty lucky to be surrounded by so many awesome people. 

March 24 - Haircut Day

Inspiration Photo

               Here it is, the moment we have all been waiting for. Haircut day! I know that it will be much easier to deal with the eventual hair loss if it is shorter. Nothing looks worse than thinning long hair. At least with short hair it will look thick longer. I had found a hair style on Pinterest months ago that I had loved. Back then I had told myself that I couldn’t cut off my hair, just after I had gotten it long. But now I had nothing to lose.

                After my morning class Briana met up with me for another day of adventures. Fortunately this time would be much less crazy than the last day she spent with me. Today was going to be a girl’s day! Chase had to be in class again, but told me the night before that he wanted me to go have a good time. He insisted that I go to a good salon and get a haircut that I would be really happy with. He was even ok with me going and buying some nice makeup. Since I would be losing my hair he reasoned, it would be a good idea to have something else that made me feel beautiful and happy. I can’t believe how lucky I am to have such a sweet and thoughtful man!

                With the instructions to go out and “treat yo’ self” the girl day began! Briana came with me to the salon. Holly, the stylist was a real professional. I showed her the Pinterest photo and she seemed to catch on immediately what I wanted. In just over an hour I went from long hair to super short. To be honest, I think it turned out pretty well. But I'll let you judge.

March 23

                Surprise, surprise today we had another trip to the hospital. This time to meet with a general surgeon who would place a chemo port. This port will be placed in my chest, just below the collarbone and is used to administer the chemo drugs. Because so many of the chemicals are so toxic it is hard for the small veins in your hand or even the ones in your arm to withstand them for long. With the port you have direct access to the large arteries in your chest. This allows the medication to be diluted quickly, and less likely to cause irritation. It also makes it easier for the nurses because they do not have to try and find a vein every time I go in for treatment, they can just plug into the port.

Here’s basically how it works:

March 22

                Sunday mornings are my favorite because I have plenty of time to get ready. This morning seemed especially important, because I knew it was the last chance I was going to have to really do my hair before the haircut. I've had short hair in the past, and I wasn't too concerned about that. But it had taken me more than a year to grow it out since then. It was finally out of the unfortunate middle stages and could practically be considered long. Hair is a superficial thing, but it still seemed like a large loss. Losing my hair would make me look different. I couldn't pretend nothing was wrong anymore. 

                 While I was spending a nearly sinful amount of time on my hair, my sweet husband was in the kitchen, doing the dishes I had neglected the day before. I truly am so fortunate to have such a wonderful man in my life. He loves me, and is so good to care for me, even in little things like doing my dishes. I don’t know what I would do without him. I just don’t seem to have the words to describe how much I love him.

March 21

                Today is the first day of the hormone injections for the fertility preservation treatments. Everything I needed was shipped to me by the foundation. A sharps box for the needles and all of the drugs. Getting it all out looked like some kind of crazy chemistry experiment. I was too scared to do the first injections on my own, and had to have Chase do it. To be honest though, the injections were with much smaller needles than I had been stabbed with for all of the tests and blood draws I’d done so far. It didn't really seem so terrible after all. I just hoped that being on all these hormones did make me too much a crazy person.

                Chase then left for a club workshop and I tried to put our house in order. It was the first time I had a chance to clean the house. Even with us being gone so much that week I was surprised at the number of dishes in the sink and I decided to do that another day. Cleaning has always been therapeutic for me and it was nice to have a chance to relax. The rest of the afternoon was spent playing games with some of our friends. The whole day was oddly normal and probably exactly what we needed.

March 20 - Last Test

                This morning we headed for the hospital for my very last test. This one was to measure my lung function and would serve as important benchmark to ensure that as we did the treatment there was no damage being done to my lungs. It is one of the more possible and severe of the side effects I could face. The test itself was long and frustrating. It involved me sitting in a box breathing into a tube in strange patterns. The technician would shout at me to breath in, breath out, pant and hold my breath in strange patterns. She kept telling me that I needed to give it my very best effort or I would half to repeat it. This meant that every time I had to repeat something I felt like I was failing.

                I haven't been this frustrated the entire process, but for some reason the combination of early morning, the length of the test, and the difficulty I had with some of it served to make me hate everything about the tests. Chase was trying very hard not to laugh at me, but every time the technician turned around I gave him a very disgruntled face. Even when we were done it left a bitter taste in my mouth. I know I will have to repeat the test at some point but until then I am just going to try to forget it even happened.

                Once the tests were over I was done with all the medial things I had to do that week. With the rest of the day free I decided that it was probably a good idea to go back to work. I had taken the whole week of spring break off, and hadn't been in the rest of the week after either. As much as I wanted to pretend it wasn't true, I was going to have to find a way to live with cancer as well as live my normal life. The guys at work teased me for my extended vacation, not knowing what had been going on. I had email my boss, but he was traveling and hadn’t shared my news with the entire team. After a slightly awkward conversation I explained what was going on. They were all very sorry for me, and offered to help me with whatever I needed.

March 19 - Staging and Treatment Options

             One week in! I can't believe it has only been one week since we found out I had cancer. So much has happened, so much has changed. We have done more medical things than I think is normally possible in this amount of time. There is only one test left to do and we have it scheduled for tomorrow.    

             Today was a day we had been looking forward to since we started this medical crazy train. Today we would get the results of our tests and know what stage my cancer was, how long I would need treatment, and everything else that we didn't have answers to yet. I was nervous, but because the CT scan results had been so positive and I still had no symptoms I was optimistic.

                Before our visit with the doctor we had to do an ECO cardiogram to make sure that my heart was strong enough for the chemo. It wasn't part of the staging, but it did need to get done. When we checked in there was some kind of record error and they printed off my form with the name Kayla Anderson. While I am very fond of some Andersons, that wasn't my name. They had to get that all sorted out before we could begin the test, so Chase and I had about 20 minutes to watch Hoarders. To be honest it was terrifying and I told Chase how lucky we were that I had cancer and not a hoarding disorder. Once the clerical error was out of the way the test went smoothly and everything looked normal. I had never seen my heart up close like that before and it was very interesting.

                From the hospital we went straight to the oncology center to talk about our results with the doctor. He started by giving us all the good news. The PET scan showed that there wasn’t too much cancer, nothing large or bulky. The bone marrow biopsy came back clean. However, the bad news was that it has spread farther than anticipated. There was cancer in my neck obviously, but it has also spread to my chest, and most disappointingly my spleen. This meant that I was going to be categorized as a stage 3A (A being non-symptomatic).

March 18

                After the sheer insanity of the last few days I decided to take the day off of work and try to start putting the blog into some kind of presentable shape. This is an experience that I want to remember. I also just didn’t think I had the energy to do much more than sit on my couch for a few hours. Turns out I was completely wrong. At about 10 am I got a call from the fertility clinic. They had received my blood tests and needed me to come down to Salt Lake for a special injection. My hormone levels weren't where they like them to be at the start of a cycle and since we didn't have time to spare they needed to help me in the right direction.

                Well, there went my chance to relax today. I called up Chase to let him know that we needed to go back to Salt Lake. He was at work and could miss his afternoon classes. Back in the car again to drive an hour and a half back to Salt Lake. At least with all of these trips Chase and I get plenty of time to talk. To be honest we have plenty to talk about. It is strange to have so many important decision ahead of us. A week ago we were enjoying our spring break and talking excitedly about what life would be like after graduation. Now our life seemed to turn in to one long string of hospital visits and making decisions with large life consequences.

                We had to stop by the pharmacy at the U of U hospital to pick up my injection, and we couldn't believe how big it was. I was going to be happy to be back in Logan. With the small clinic in Logan, the wait times were much shorter, and people were starting to recognize me. Here I was one tiny person in a very, very large hospital, where everyone was in a hurry, and everyone had problems.

                After we stopped at the pharmacy there was a little time to go eat lunch. We had both packed a lunch that day so we decided to stop at Sugarhouse Park. It is right next to a high school and it took us a while to find a nice spot that wasn't already taken over by horny teenagers. It was fun to have a little picnic and spend some time together doing something romantic.

March 17

                Today was another busy day where there were a million things that needed to get done. The morning started off beautifully- Briana showed up with muffins and orange juice! I had several appointments that day and she willing volunteered to come with me as moral support, since Chase really needed to make an appearance at his engineering classes.

               . The majority of the day was spent running between hospitals and campus. I needed to do a blood test for the fertility clinic, get my birth control implant removed from my arm, fill out the paperwork for the foundation that would be providing me with my fertility medications, pick up my cap and gown from the grad fair, and go to class and meet with my professors to let them know what was going on.

                It was constant running all day long. There was hardly any time to even stop to eat as we hurried from one thing to the next. Briana was a gem and stayed with me all day, and came to all my classes. While we waited at the hospital for my blood test she even called to see if she could my birth control removal. Because I choose to do a progesterone implant in my arm as my birth control I had to have it removed by a doctor before we could begin the fertility preservation cycle. Waiting at the hospital also gave me time to fill out my paperwork for the fertility medicine, and drop the doctor’s part of the paperwork off at the oncology center.

                After blood work we went to another class, and then the grad school fair where I ordered my cap and gown. It was strange to be there with so many people who were only thinking about graduation, while I was worrying about so many other things. Then it was off to another class. Chase had a break and offered to scan and send in the paperwork we needed to for the fertility preservation foundation, while Briana and I were in class.

                After all the classes were over we went to visit with my professors. I knew that I was going to need some help and flexibility if I was going to be able to graduate in 6 weeks. The last thing I wanted to do was drop out of my classes this close to the end. I want to graduate, cancer or no cancer! Fortunately I have some wonderful professors who have been more than willing to work with me and have offered to help me in any way they can.

March 16

                Today is the day that I officially begin the series of tests that will tell us more about how far the cancer has spread and what my treatment schedule will officially look like. The testing started at 9 am with a PET scan. I knew that it was a more intensive scan that the CT scan we did Friday, but I hadn't really been given any instructions on how to prepare for it. I assume that was because everything was just moving so fast and no one had time to get anything to me. Fortunately I did some research on my own and knew that I wasn't supposed to do any exercise at least 24 hours before, and to not eat that morning. Hoping I hadn't missed any other important instructions we left for the appointment.

                Turns out the worst part of a PET scan is how boring they are. In order for the radioactive sugar tracer injection they give you to work you have to sit still and quite for 45 minutes. This is so your muscles and brain don’t absorb too much of the tracer. Because cancer cells are so active they tend to attract the tracer most, causing them to appear as bright spots on the scan. This doesn't work if you are being active or even reading because then your muscles and brain show up too brightly.

                After sitting around with no distractions they put you in the scanner, with your arms above your head and tell you to not move. I had no idea it was that difficult to be still. It takes about 25 minutes to get the scan and in that entire time you can’t move even your toes, so that all the images they take turn out the way they should. I was even afraid to dose off and nap because I twitch in my sleep. After an eternity of lying there with my hands going numb I passed! Everything look good and I wouldn't have to repeat it. Thank goodness to, being that still is not my talent. Now it was time to go on to the next test.

March 15 - Blessings

                Today was nice because we didn't have to do anything hospital related. It was actually the first totally normal day we'd had since Thursday. It was also the first day that we had to start telling people what was going on. Of course our families knew at this point, and our families had started telling our extended family. But it was harder telling our ward and close friends for some reason. Maybe because we see them more often, and because I was so afraid that this was going to change the way they treated me?

 Chase had a morning meeting with his Elder’s Quorum presidency and let all of them know what was going on. I told my visiting teaching companion and good friend Tiffany. It was harder that I had expected it to be. The more I told people the more real it seemed, like I was letting it become a part of my life by talking about it. Seeing other people feel sad, and worry about me was a strange and uncomfortable experience. It got to the point that just talking to people was exhausting because every conversation became at least 20 minutes of explaining what was going on, trying to comfort them, and not being able to answer all their questions. I started asking all of my questions about their life first, because I knew that once I told them, cancer would be all they wanted to talk about. Not that I blame them. It is a big deal, I can’t pretend it’s not, and we have so many friends who care so much about us they want to know what is going on. This was the reason that we decided to do a blog. To help keep people up to date, while at the same time, saving us the emotional effort it takes to talk through it again and again.

                We invited some of our close friends over for dinner that night and it turned out to be a lot of fun. Of course there was the obligatory cancer conversation, but we were also able to talk about their exciting news to. They had just bought a real house, and they were even nice enough to drive us over and show it to us. It was nice to know that good things are still happening to other people and to know that our friends care about us and want to understand the crazy mess our life has become.

March 14 - Kyle's Visit

                Today one of my good high school friends came up to visit. We had been planning his trip up to visit us for weeks and I didn't see a reason to cancel on him. In fact it was probably a good thing to stay busy and do something fun, instead of moping around in my house. Kyle showed up early that morning and we sat around and talked for a while before going out for fun. We told him all about my diagnosis. I don’t see a reason to keep it secret from anyone. It is a major part of my life now, and not telling people just because I don’t want them to feel sorry for me does everyone a disservice. Kyle was wonderfully supportive, and it was really great that he never treated me like I was about to fall to pieces. Telling him up front seemed to make the day go more smoothly, because I never felt like I had to hide anything, or hold back any of the sarcastic cancer jokes I felt like making all day.

March 13

                I finally managed to get to sleep around 6 am. Chase let me sleep all the way until 10. By the time I got up I was worried that we were going to miss our appointment at 11. Fortunately the oncology clinic is only 8 blocks down the road. It’s hard to beat that for convenience.

The nurse at the front desk showed us back to the doctor’s office. His office was the most interesting collection of animal carvings and sculptures I have ever come across. Every flat surface seemed to have something on it. I wasn't sure exactly what kind of person this doctor was going to be, but he had very interesting taste in decorations. But once he entered the room he put us at ease. He came in in his track suit, since Friday’s are his day off and he agreed to come in to the office to see me specifically. He took all the time we wanted and was able to answer every question we had to ask him. The night before we had put together about two pages of questions we wanted to make sure we got answered and he had covered most of it before we even got a chance to ask them. He was patient, thorough and very kind.

March 12 - Diagnosis Day

Thursday morning finally arrived and we decided to wait until the last possible moment to drive back to Logan so that we weren’t just sitting around our house waiting until we could finally go to the doctors and find out what was going on. So we spent several hours exploring the sporting goods stores in South Jordan.

Once it was time to head north we had a lot of time to talk about what could be going on and what we would do in a “worst case scenario”. Well, if we're being honest, I wanted to discuss worst case scenarios and Chase was convinced we didn't need to worry about it unless it happened. He’s good at keeping things in perspective that way. He did indulge me a little and said that if the doctor told us it was cancer it was a once in a life time opportunity to say something outrageous. Here’s what he came up with: “Oh good, we thought that aliens had laid eggs in her neck. Cancer we can handle.” We both laughed at that, but in the back of my mind I was still scared.

March 10

                The hospital called again to ask me to come in but I missed the call. When I did call them back and explained that we are in Salt Lake and couldn't come in that day they ask if we could schedule for later in the week. Because Lindsey is going out of town early Friday they asked if Thursday afternoon would work. I agreed that we could be back in town and they asked me to bring my husband with me to the appointment.

                Now, I am fully aware of the rule that, from a hospital, no news is good news and having them call a week earlier than expected is not normal. Asking me to bring Chase just confirmed that something is up. It’s all I can do to not drive myself crazy with “what ifs” until Thursday.

March 9

                Chase and I are down in Salt Lake to spend some much needed quite time with our families over spring break and to recharge before the sprint to the end of the semester.

                The hospital called. The results from my biopsy are in and they would like to see me as soon as possible, could I come in tomorrow? I tried to call them back but it must have been their last call of the day because the office is now closed. I’ll try and get in touch with them tomorrow.

March 5 - Biopsy day!

                 Leading up to this point I had felt pretty sure that I had made the right decision and that it was better to know what I was dealing with than blindly throwing drugs at it in the hope that it went away. But wouldn't you know it, that morning the lumps were smaller! I mean drastically smaller. Almost to the size of when I had first discovered them! They had been going down a little in the week since my last appointment but now they were practically gone. Of course this would happen on biopsy day.

                I started to wonder if I should go through with the surgery or if maybe I had made the wrong choice and was just being a hypochondriac. (Which Chase had teased me about to try to keep me from immediately jumping to the worst conclusions) Fortunately the doctor performing the surgery came in to chat with me before the procedure. We hadn't met before and he just wanted to look things over himself before I went under the knife. He told me he wanted to be sure about doing the biopsy and if he didn't think it was necessary we could call the whole thing off. I told him that they had shrunk and he asked me the standard set of questions. “Have you been sick?” “No.” “Any fever?” “No.” “Any other symptoms?” “No.” “I feel totally healthy except for the lumps on my neck.” “Ok, well, it is still a sizable lump for a lymph node and since you haven't been sick let's go ahead and get a good look at it.” It was comforting to know that he took the time to make sure that this was the right thing for me, even right before I was scheduled to go into surgery.

                Most of the morning was spent waiting around. I got checked in and put on my oh-so-fabulous hospital gown and grippy socks. The nurse came in to start an IV, and she and Chase had a long conversation about why the new ones were worse and harder to use than the old ones after the first IV didn't go in quite like it should have and got blood all over my hand. I’m glad I can provide some entertainment for Chase. He’s looking to engineer medical devices once he is done with school and all this hospital time is giving him extra exposure.

                 The surgery before me ran long and we ended up waiting nearly an hour and a half past when my surgery was supposed to begin. It was a relief when the nurse arrived with some heated blankets because by that time I was freezing. Hospital gowns were not made to protect you from the harsh conditions of industrial AC.

                Once the doctor had finished talking to me the anesthesiologist came in and had injected something into my IV before I even knew what was happening! I was then whisked away to the operating room without saying goodbye to Chase. Not that I really needed to, it was a twenty minute procedure, but still. Hospitals are scary, give a girl with a dramatic imagination a chance here!

                Once I was on the table the nurse asked me one more time for my name, allergies, and what procedure I was there for just to make sure we had everything straight before they started cutting. The lights on the stands looked exactly like huge versions of the light at the dentist. That must have been when the drugs kicked in because I have no more memories of that room.

                The remainder of the day is mostly a drug filled blur. Chase claims that I asked him how the surgery went at least 5 times and could not pronounce the word tapioca when the nurse asked what kind of pudding I wanted while I was in recovery. I do remember that pudding had awfully large lumps compared to normal tapioca. Also the apple juice was almost sickly-sweet, but delicious because I hadn't been allowed to eat or drink anything after midnight before the surgery and it was 3:00pm at this point. The nurse who checked us out told us they would call to schedule a follow up in 10 days and wished us a happy spring break.

                That night my wonderful friend Briana came over to welcome me to the neck scar club. (She has a really awesome one from having half her thyroid removed a few years back).