Well I have officially been in the hospital for 13 days, and there is no clear end in sight. I wanted to update everyone on how I have been doing as well as explain how the stem cell transplant works. I checked into the hospital on December 21st. That day was what they called "Day -5." They use negative days to count up to the stem cell transplant and then the day you get your stem cells is referred to as "Day 0" since you are starting with a clean slate. After day zero they then begin to count up from there, so even though I have been here for 13 days, today is technically called "Day +7" Kinda confusing right? The main point is that I have been trapped in the same room for a really long time.
Over all the process has gone as well as expected so far. By definition a stem cell transplant or is a procedure that replaces defective or damaged cells in a patient's bone marrow. It's a little confusing because it is also referred to as bone marrow transplant. The part of your bones called bone marrow make blood cells and contains cells called "hematopoietic" stem cells. These cells can turn into bone marrow, white blood cells, or red blood cells. I am getting what is called an autologous transplant . In an auto transplant your get your own stem cells (mine were harvested and frozen back in July) placed back into your body after receiving several days of STRONG chemotherapy. So basically that means that on "Days -5, -4, and -3" I went through 6 rounds of chemo. This chemo was different from the chemos I had been receiving in the past. The hope was that since I had built up a small tolerance to my regular chemo, this new chemo would be strong enough to kill off any remaining cancer cells that I had left in my body. Those three days went pretty well, with the only downside being that they scheduled chemo each night at 9 pm. Clearly no one informed them that my bedtime was 8 pm! Besides being a little bit tired, the first three days went by fast.
After the rounds of chemotherapy, I was given two days to rest. These two days happened to fall on Christmas Eve and Christmas, so it was nice to not receive chemo on a holiday. I was able to have my family come visit and was even broken out of the hospital for a bit to be wheeled around Forest Park. Luna also made her first debut on the stem cell floor as an emotional support animal. Then on December 26th I received my stem cells. Trust me when I say that it sounds a lot more exciting than it actually was. On stem cell day they brought in a large turkey roaster filled with water. This was used to thaw my frozen stem cells directly in the room.
They brought in the bags of frozen stem cells that were mixed with preservatives. Once the bags were thawed (which only took about 2-3 minutes in the water), they had to immediately hang them into my IV drip to be administered. This process had to be done quickly because at room temperature the preservative actually starts to harm the stem cells. Once they hung the bag, it only took about 4 minutes for all of the stem cells to get into my body. The weirdest part about a stem cell transplant is actually the smell. People had warned me before that the preservative when thawed smelled like creamed corn. And man, were they right! Not only did it smell like it, but I also had the taste of corn in my mouth. To help with this I sucked on a couple of candy canes to try to distract myself from the taste and smell. Because the stem cells were still cold when they entered my body, it gave me the chills, so I had to wrap myself in several different blankets. All together the whole stem cell transplant took about 30 minutes. To help my body accept the stem cells better, they gave me lots of medicines and drugs to help calm me down. Even though it was a short process, the longest part of my day was the wonderful nap I took afterwards.
In the days following the stem cell transplant I was closely monitored as my white blood cells and red blood cell count began to drop. This was as expected and was a result of the high dose chemotherapy. If I would not have received my stem cells, there was a chance that my counts would not have recovered on their own which can be potentially fatal. Through this process I have learned that a stem cell transplant (or bone marrow transplant) is really just another way of getting intense chemo and then recovering. Over the next few days I began to develop several fun side effects from the chemo. The first one was a general feeling of exhaustion. Most days I was so tired I couldn't even sleep. Then around "Day +3" my platelet count bottomed out and my blood wasn't able to clot as easily. I started to get bad nose bleeds that were hard to stop. To help with this the doctors gave me several transfusions of platelets. The nausea and vomiting were also very present. However, the worst side effect so far is the mouth sores from developing mucositis . This is when the membrane lining of the digestive tract gets inflamed and swollen. It feels like I have burned my entire mouth on a really hot piece of pizza and it won't go away. They have given me lots on pain medicine but there is nothing they can do to heal my sores besides sit around and wait, which we are doing a lot of right about now.
It looks as if I will be in the hospital for one to two more weeks. They are unsure of the date because it will be determined by how my blood levels bounce back. So far I have been doing pretty well with being stuck in the hospital because I know that it is the best place for me to be right now. Hopefully the rest of this process will go smoothly and I will be home before I know it!
I have to be honest. I have been avoiding writing this blog post. It's been about 2 months since my last blog post so I figured it was about time to update everyone on how the progress has been. To be candid it hasn't been an easy time for me and my family. It's been nearly impossible to think of writing about everything that has happened. Even now writing these words are tough and it is bringing me to tears to try and explain what has been happening since I don't even understand myself. Even so, I know I need the love and support of everyone. Sometimes when I don't feel like I can go on I think of all the people who are routing for me and it helps tremendously. I owe it to you all to update you on what's happening so that I can continue to receive the support I desperately need right now.
Back in October we thought we were on the upward swing of things. My scans were clear, my cancer levels were down and I thought that I could see the finish line. However, looking back now I can see how naive it was to think this, but I was able to spend much of October enjoying my time with my family and friends. We traveled to Florida and I was able to walk on the beach and go to Disney World (something I have been wanting to do for a long time). I was also able to go up and surprise my family is Wisconsin and also had family come down to visit me. We spent some time down on the lake in Branson Missouri, and I felt relaxed and ready to take on the next step in my treatment.
Then on November 4th I had a PET scan done. The results didn't come back as we hoped. There were two spots that my oncologist was worried about on the scan, but there was a possibility that it could be cancer that was dying because of the chemo. So we went into an exploratory surgery on November 8th. There they confirmed what we had been dreading. The spots were not only cancer, but active cancer. This was more than what they were hoping to see after four rounds of chemo. I spent a week in the hospital recovering from the surgery. It was a hard week on all of us. I was on a lot of pain medicine and honestly I don't remember the first half of the week. There were lots of people who came to visit me and I can barely remember them being there. I also was dealing with a much larger incision than I was after the first surgery. The doctors ended up having to open me completely up from my chest down. They removed a lymph node that had visible cancer on it and also resected about a foot of my colon that had spots of cancer on it as well. The recovery from this was rough and I am still dealing with side effects of the colon resection.
After a week I was released from the hospital and we were left with a feeling of defeat and struggling with what to do next. Our oncologist was honest with us and told us he wasn't even sure what the next step should be. Since they had found active cancer they weren't sure that a stem cell transplant was the right thing to do. He told us that it seemed as thought the chemo wasn't working as effectively as we had hoped it would. I left his office that day feeling completely defeated. I felt as though I was right back to where I was in June. Recovering from surgery and not knowing what the next step in the process would be.
In this family we don't take things laying down. So with everyones help we dove into the deep end researching different doctors who have seen more of my type of cancer. We set up appointments to meet with doctors in Cincinnati, New York, and Houston. Right before thanksgiving we traveled to Cincinnati to visit with Dr. Pressey. He worked at a children's hospital there but had seen a lot more cases like mine and hopefully could tell us the next step. While there we were relieved to find out that in cases like mine its not unusual to find cancer during the exploratory surgery. Additionally, they believed that since the doctor cut the remaining cancer out during the surgery they thought that I was in enough remission that the next step should be a stem cell transplant. They confirmed that the chemo didn't work enough to completely clear out my cancer. It did keep my disease at a stable condition though. They believed that the cancer they found at the second look surgery was not a lot of new cancer growth. They thought this could have been there all along without us knowing. This meant that although the chemo didn't kill the cancer, it wasn't allowing it to grow any further. This was good news, however they also said that since it had been almost a month since my last round of chemotherapy, they thought I should have another round while waiting for a spot to open up for a transplant. This meant that when I returned home I would get to spend Thanksgiving at home but then would check into the hospital the next day for my fifth round of chemo.
So once again the plan was changed. We canceled our visits to the other doctors but we were able to talk with some of them to confirm that they also wanted us to proceed with the stem cell transplant. Then we started the process of getting in line for the next spot available for the transplant. This proved to be harder than we thought. There is a lot of red tape that you have to go through in order to be approved for a transplant. We had to fight with insurance agencies, fight to get appointments with the right doctors, all while I was fighting through my fifth round of chemo. And let me tell you that the more chemo you get the harder it is to bounce back. I was incredibly tired all the time, and it wasn't the type of tired where you can just sleep it off. I was too tired to even sleep. Then the lack of sleep made the whole problem worse! It was a long week but eventually we pulled through and got things set up for me to go into the hospital on December 14th. That meant that I would be spending Christmas and New Years in the hospital. It wasn't easy to hear that news. I knew this was going to be incredibly hard on Kyle and I. We planned it out so that while I would be in the hospital Kyle would be staying in a hotel downtown to be closer to me. This meant that both of us would be without our dog, Luna, for a very long time. This was the hardest part to swallow but we knew this was the next right step for us to do in order to carry on.
Just as I was dealing with the fact that I would be going in for stem cell on the 14th the plan was changed yet again. I went to visit my doctor before to confirm the plan and learn more of what to expect going forward. At that appointment they drew blood and found that my platelet count was dangerously low. This was due to my most recent round of chemo which wiped out my red and white blood cells. Usually this isn’t a big deal, the numbers usually bounce back in time for my next round of treatment, but because of the stem cell transplant I needed to get a central line put in. This is a minor surgery where they place a line in my veins so that I don’t have to have an IV in the hospital. I already have a port that does something similar but for the transplant they needed one that was wider so that the stem cells weren’t broken when they go into my body. Because my platelets were so low they were worried about me bleeding out during the surgery. Therefore they pushed my transplant by another week.
This means the plan is now for me to go in on the 21st of December. However this could still be changed because of my platelet numbers this week. Once again we are in a limbo. Waiting is the absolute worst. I feel like I never know exactly what each of my days will look like. However, I am also not disappointed that I get another week to spend at home. Kyle and I agreed that we would make the most of this week and fit the most Christmas activities as possible. We have already decorated cookies, went to see Christmas lights, finished our Christmas shopping, and even took Luna to see Santa. In the week ahead we are doing our celebrations with our family early so that we still experience the feeling of Christmas.
If there is anything that I have learned from the last six months it’s that you have to make the best of each and every day. I am so thankful that I have gotten the time I've had with my family. These past six months have been absolute hell, and I still can’t believe this is happening to me. However, this experience has brought me and Kyle much closer. Granted there’s days where we act more like each other’s caretakers than husband and wife, but there’s also days where we can’t bear to be apart for longer than 15 minutes. Every day I wake up thankful for another day that I get to spend with him and my family. I know that even if this disease ends up taking me that I have made the most of every day. I have spent the last few months appreciating the little things in life and loving the people who mean the most to me. Ive attached some pictures to this post to highlight some of the things I have done these past months to keep my spirits up.
Now, going forward it’s going to be hard to always update the blog. The 4 to 6 weeks I will spend in the hospital without much energy. During this time we would really appreciate positive thoughts and prayers. It’s not just me that will be living out of the hospital. I know Kyle will spend most of the nights sleeping next to my bed and my family will make the drive down to see me every day. This time will be hard on all of us. I hate to ask for anything but I know people would love to help in some way. Throughout this whole process I have loved to get cards. They bring a lot of brightness to the mail that is usually filled with bills and disability checks. So if you would like to feel free to send a card that I can keep while I’m in the hospital. So far I have kept every single card that has been sent to me. I keep them in a large box and when I am feeling down I get the box out and look over the cards. Its something small but it keeps me motivated when times are tough. Going forward I am going to need to hold on tightly to those things to keep me going. I plan to update the blog again after I am home from stem cell. Instead of updating my blog I plan to document more of my story through my Instagram. You can look me up and follow me at Kimberlynhope. I’m hoping to keep everyone updated with my progress.
I follow a couple of social media accounts that post comical things about what life is like when you have cancer. The other day one of the accounts posted a video of a football player at practice and as he is running down the field he manages to catch a ball labeled chemo, a ball labeled radiation, a ball labeled surgery. Then suddenly a ball labeled mental health comes out of nowhere and roasted him in the head, completely knocking him out. I laughed out loud the first time I saw the video and then after watching a few times I realized that this is truly what its like having cancer. You spend a large amount of time preparing for things like chemo and surgery and then suddenly out of no where the mental health aspects will leave you knocked out, much like the football player.
World mental health day was on October 10th so I thought it would be important to talk about the mental health side effects that go along with having cancer. Thankfully we live in a world today where talking about your mental health is not as much as a stigma as it was before. As a school teacher I have always made sure to take time out of the day where the students learn about how to take care of their mental health. We talk about anxiety and how it can affect how we feel about school and tests. We also talk about how to handle our emotions. I think it is so important that students realize that it's okay to talk about these issues and that it's not a bad thing if this is something you struggle with. My junior year of college I went through a terrible time where I was constantly having stomach aches. Any time that I knew I would be in a social setting I would practically make myself sick. It took several months, and lots of doctor appointments before they recommended that I see a therapist for anxiety. I hadn't even considered that it was my brain that was making me sick. From then on I have taken lots of steps to help me cope with my social anxiety. I still dread going into social settings but I have the tools now that I can handle them much better than before. However, even though I was dealing with a mental health illness I didn't tell many people about my struggles. Its funny because when I got diagnosed with cancer I made this whole blog to document my journey along the way. When I was diagnosed with social anxiety I would have never thought of sharing this with people on social media. I barely even told my closest friends the severity of what was happening.
Even now I have to admit that I am a little nervous to be making a blog post about my mental health. You want people to think that mentally you are fine. It's scary to admit to people that you aren't always looking on the bright-side of life. It's scary to admit that sometimes it's hard to get out of bed and that some days you are filled with thoughts of dread that you can't imagine a happy future. You see people don't normally talk about their mental health but when you have cancer it's even less of a thing to talk about. You have so many doctors appointments and other physical health problems to deal with that often times your mental health goes unnoticed. For me, this summer I was so caught up in living hour by hour and just focusing on how I was physically feeling each day that I didn't pay attention to how all of this would effect me mentally. It wasn't until my physically health started to get better that I was sacked by the mental health side effects.
It took me until now to realize that this summer I almost died, I also lost my ability to have my own biological children. Both of these things on their own could wreck a person and honestly the feelings and emotions of it all are finally catching up to me. I often feel silly for trying to push away my feelings but that is often what we are told to do. As a society the expectation is to "buck up" and to continue on like everything is fine. However, everything is far from fine. But if there is one thing I have learned through all this is that you determine your own path. When I have days where I am feeling blue I have ways of helping myself stop the train of thought and help myself get off the negative train of thought. That is the key in dealing with your own mental health. It's important to find things that can change your mood. It would be so easy for me to lay in bed every day. Somedays I feel like it. But I have to find ways to motivate myself, I take my dog for a walk, read a book, or do something to change my scenery for once. These things are so important to helping change a gloomy day to a brighter one.
One of the biggest things that is hard for me now is looking ahead to the future. Before getting cancer I wouldn't really stress when it came to the future. I had an amazing husband, a wonderful house and everything was looking great. However, now I can't even look forward a few days because the future is so unknown. We don't even know if we will be home for thanksgiving and Christmas or if we will till be in the hospital. Even further than that my life will be dependent on my most recent scans and blood tests. It's a different way to look at life. Because of that I no longer can plan things too far in the future, around here we are living day to day. And sometimes thats the best thing to do. Each day we think about if it's a good or bad day. And the good days are definitely more prominent than the bad days. Sometimes you just have to take it one day at a time and do whats best for your mental and physical health.
When we got married we got a lot of decorations for our house that weren't exactly on the registry. One of these items was a small sign that said "blessed," at the time I disregarded the sign, it was cute, matched the decor in our living room, so it could stay, but honestly I didn't care much for it. I had seen signs like these around at stores and honestly had thought they were stupid. Putting up a sign telling people you are blessed seemed like you were just bragging about the things you have. At the time I didn't realize how truly blessed I was. Sometimes it takes something serious like a disease or hard time to realize how blessed you are. I would give anything to go back and relive even one of my worst days before cancer. I would love to have a long day at school, running to the grocery store, cooking dinner, doing the dishes and even the laundry. It sounds like a simple day but even now if I took on all that I would have to sleep for days to recover from all the activity.
Now I look at that sign and think about how truly blessed I am which sounds funny since I am in the middle of my cancer treatment. However, I am blessed my treatment is going well. My body is responding to the treatment. I have some side effects from the chemo but mainly I am just fatigued all the time. My doctors are thrilled about the progress I have made. In fact I found out this week that not only are my tumor markers back down to normal level but also my scans came back clear meaning that the cancer is no longer evident. My doctors have officially told me that I am in remission. This was something that I had dreamed about since hearing that I had cancer. And honestly I was beginning to think that it might never happen. However, I was so excited about the news but it only lasted a few minutes. When I asked my doctor if this would change anything in my treatment he promptly responded with a solid "No." I still have to go through another round of chemo next week. Then after that I will have a surgery where the doctors will go in to visibly look to see if there is any cancer left. Once I recover from the surgery I will then go forward with the stem cell transplant. With that I will have another round of high dose chemo and then I will need to stay in the hospital for four to six weeks as I rebuild my immune system. You would think that once you get the all clear and the official "your scans are clear" talk you would be done with everything and life would resume as normal. However, that is not the case. I still have so much more to do. On top of that I still look like I have cancer, I still have no hair and my body is still weak and most days its hard for me to get out of bed.
Even though I am cancer free mentally I have been in a hard spot knowing everything that is coming up. I still don't know the timeline of when I will be done with my treatment. Honestly thats the most overwhelming part. I feel as though life right now is series of dominoes, depending on how this round of chemo goes determines when my surgery will be. What they find in the surgery determines how long my recovery time is. Depending on the recovery time it will determine when I will go in for my stem cell transplant. And the best part is not even the doctors know. Every time I ask them what the timeline is they give me different answers. It could be three more months or it could be up to four to six. I constantly feel like I am living in a hamster wheel where I am running and running to get ahead of this but the wheel just doesn't stop turning.
People come up to me all the time lately and tell me that they have found my blog so inspirational. However how can you be an inspiration to other people when you can't even be an inspiration to yourself? I have to admit that it is hard. My life is no longer what I thought it would be. It sounds terrible but I had just gotten used to the idea that I was dying only to be told that I was going to live. It sounds like something that I should be excited about. It should be easy to adjust your mindset for this but I have found it to be harder than I thought. I am excited to have such a good outcome but at times I am overwhelmed about what life will be like after my treatment, because my life won't be the same. I will have to live scan to scan waiting for the other shoe to drop. The thought of waiting in suspense to see if the cancer will come back is terrifying. I am not sure how people live with that feeling. I have reached out to other cancer survivors and counselors because I know this is something that many cancer survivors struggle with. However, for now I have to live in the present because the future is so daunting. Each day I have to think to myself "is today a good day or a bad day?" If its a good day (which is the most likely answer) I have to live in that moment and enjoy the day. Often times when life feels overwhelming its important to take note of the good things in life and let them out weigh the bad.
Now at times I feel guilty for being so overwhelmed with everything going on. After going through this process I have realized that others in my position aren't so fortunate. Ovarian cancer is often known as the silent killer because it often goes undetected until it is too far along. My cancer was found when I was only at stage 2 but often times this is not the case. I am thankful every day that God allowed it to be discovered so early on that I have a good chance of coming out of this and being cancer free. However some people aren't so lucky. I have had so many people praying for me and it shows. I wouldn't be in this position if it wasn't for every single one of those prayers. I want to thank everyone who has kept me in their thoughts and prayers over so far. I also want to ask that you keep me in your prayers as we go forward. I still have the toughest parts of my treatments ahead of me, but at this point we are trying to keep the cancer from coming. Which sounds amazing that I can finally say that.
Sometimes when teaching second grade the topic would come up of what the kids were afraid of. The responses were often things such as spiders, monsters, the dark, snakes, and other simple things that kids should be afraid of. Gosh even if I asked a room of adults the same question I would probably get the same answers. We all have things that we are scared of that cripple us to the bone. If you would’ve asked me what I was afraid of two months ago I would’ve told you that my biggest fear was being sick. I know, it's not a normal thing to be afraid of. Before all this I would have never had admitted my true fear to anyone. Being sick is not something that you should fear. But I did. I feared myself getting sick and more than anything I would be afraid that people around me were sick. I’ve always hated being sick as a kid, I’ve hated the feeling of not being in control of your body. Now I’m faced with a situation where I have to face my fear on a constant daily basis. No matter what I do to take control of my situation I am faced with the reality that for the time being I am always sick.
Most of the time the sickness doesn't show itself in the normal way. I look normal (minus the hair cut) and I feel relatively okay. The week before the second round of chemotherapy I was feeling really good. It was the best I had felt in months in fact. I was back to my normal routine, I could take luna to the park, drive myself to the store, Kyle and I even were able to go on a real date. I felt a false sense of reality that I didn't have cancer. I was dreading checking myself in to the hospital for the second round of chemo. I didn't want to go at all. I wanted to continue to feel this normal for awhile. But inevitably, I went and I was pumped full of the drugs. When I got home from the hospital I was constantly throwing up and passing out. I found myself facing my fear on a daily basis. I was sick. I still have cancer and I'm not better yet. I won't be until I get through all these miserable treatments. And for me, being sick doesn't just mean feeling crappy and laying in bed. It gives me a constant sense of panic and fear. So, how do you go on with any motivation when you’re constantly riddled with fear?
Well I can tell you that eventually it does get better. Eventually your fears will change. Being sick doesn’t seem so scary anymore it just seems like a way of life. I have found that through this process there are several things to be afraid of but there are also ways that you can help yourself overcome those fears. For example, think about what you can control in the situation and manage what you can control. For me, being sick is one of the biggest things that I would avoid in the past. I would constantly be pestering people with questions of if they’re OK to make sure that no one around me was sick as well. I don’t do that anymore. I know myself and how I’m feeling in control my situation. For this last round of chemotherapy, I was able to control what I packed going to the hospital. That simple thing made it a little bit better to face my fear of the next round of chemo.
The other thing that has helped me face my fears is giving them over to God. Now I know a lot of people read my blog and you all may not believe the same thing that I do. But I believe that in giving your fears over to a bigger power, for me that is God. I know it sounds cliche, but really it works for me. After the first round of chemo, I wound up back in the hospital for being neutropenic, meaning that I didn't have any immune system. When I was there the doctors told me I would most likely be there for several days while we wait for my white blood cells to duplicate. I was bummed and disappointed because at this point I had spent a grand total of 3 days at home in the past three weeks. However, this time around I decided to trust in God. I didn't worry about what the doctors were telling me and I said a prayer that God would take care of this on his own and would be able to send me home when he was willing to. The next morning I woke up to one of the doctor's coming into my room to tell me the news that my levels had skyrocketed over night and that I was able to go home that day. I honestly almost started laughing. Ever since I was diagnosed with cancer I felt like I couldn't catch a break, I had bowel blockages and so many other complications. Finally, when it came down to it, all I had to do was turn it over to God and things started to turn around.
Ever since that day when I was able to come home from the hospital early, things have been heading in the right direction. The second round of chemo was hard, but I am already starting to feel back to normal a week after treatment. The doctors are "ecstatic" with how I am responding to treatment so far. My tumor marker level, which is used to tell how much cancer I have in my body, has come down drastically. I also went through the process of harvesting my stem cells, which sounds a lot scarier than it was. Essentially, they stick you with two IVs and they take out your blood and spin it around to separate the red and white blood cells. The red cells are put back into your body and the white cells, which contain the stem cells, are harvested for later. The hardest part of this whole process is having to sit still in a chair for 6 hours a day while they get the cells they need. When I went in they estimated that I would be coming in 4 separate times in order to get the number of cells I needed. However, I got the number of cells they needed in the very first day. They were shocked and so was I. Things are finally looking like they are going in the right direction. I have a couple of weeks to recover before my next treatment. This time will be hard for me because I am supposed to be back at school. If I had a normal job working in the office, I think I would be able to go back to work between treatments. However, since my job involves working with small children who are notorious germ carriers, I have to stay home since my doctors are worried about compromising my immune system. I have projects that I can work on and if my blood work labs are good I will be able to sneak up to school here and there. But for the time being, the focus is on staying strong, and overcoming my fear for a few more months until I can say that I am officially not sick.
Throughout all this, I realized that you can't face your fears on your own. You need the help of God to get you through it. Today I was in church and it hit me. My anthem during this journey with cancer has been "Actually I can." When I have been faced with a hardship I think to my self "actually I can," when I feel like I can't keep going I remind myself "actually I can." When I feel alone I think about everyone who is wearing an actually I can bracelet and is there to support me. However even though this has been getting me through hard times, I realized that I shouldn't be thinking that I can physically do anything on my own. I need to be thinking "Actually, I can with the help of God." I am not alone in this journey. I don't have to face my fears alone. I get to face them with all my supporters and especially with the help of the Lord.
Ever since I’ve had chemotherapy I’ve been living in the state of denial. Every time I would experience a side effect I would kind of brush it off as if maybe it was not from the chemotherapy. For example when I get started getting mouth sores and could barely open my mouth and I honestly thought "Oh, maybe I just burned my mouth on the pizza last night. There's no way this is a side effect already." But I had to face up to the reality that I had chemo therapy and it was starting to affect my body. It’s crazy that you pump your body full of poison in order just to get better. Sometimes I think about it and I think about how ironic that is that we’re fighting the disease by also harming our bodies. The hardest denial that I’ve had is with the hair loss. Everyone has to admit that the thought has passed through your head. What would happen if I got cancer and lost all my hair? What would I look like? Would I still be attractive? I used to tease Kyle and ask him "Would you still love me if I got sick and lost all my hair?" and of course he would respond back with "Of course I would, stop being crazy. You're not going to get cancer." (Ironic huh?) I was so convinced that maybe this side effect would just "skip" me. I mean with every drug I had there was only like a 30% chance I would loose my head. Now a logical person would say "Kimber, if you are putting 6 different drugs in your body that each have a 30% chance that you will loose your hair that means overall theres is a 180% chance that it will happen." Not at all how I thought. I heard 30% and thought for sure it would not happen to me. Every day after chemo I would wake up “test” my hair. As in I would pull on it to make sure that it was still there and not falling off. I was pretty naïve about the fact that maybe I wouldn’t lose my hair with the chemo. And then the hair fell out.
It happened so quickly one day I was putting my hair up for a ponytail and there was a little strand that was that was left out of it and I went to go grab it and put it back in the ponytail and instead of going in where it supposed to just came right out. I was shocked. Then after that it was like the gates were open and it wouldn’t stop. I looked like Id been shedding like a dog and the worst part was that I would leave hair everywhere I went. I decided that day that I was going to get my hair cut short into a pixie cut. I had read online that it’s an easier transition If you cut your hair short first for a little while before going completely bald. So on that first day when I first found my first clump of hair I made an appointment two days later to get my hair cut off. I also faced up to the fact that I would have to order a wig. My mom and my sister were super on top of the wig thing and had been bugging me about it for weeks but I had just put it aside, and put it aside. The last thing that I wanted to do was go shop for a wig when I still had my hair. However as soon as it started falling out I realize how much of an inconvenience it was. There was hair everywhere. I could barely brush my hair or take a shower without large clumps of it I also realized that my hair had started to look bad as well. It looked shabby, dry, and frayed, and honestly it just wasn’t worth it.
Walking into the wig store that first time was terrifying. I cried before I went but I didn’t cry in the shop which I counted as a win for me. Surprisingly, I felt more confident in the idea of a wig after I try to couple of them on. You really can’t tell the difference but it definitely doesn’t look like my real hair. I also didn’t know that there were so many different choices when it came to wigs. You can choose a synthetic wig or a real hair wig. You can also choose different colors and cuts and styles and if it has a lace up front. I learned a lot with in that first time going to the shop. We ended up ordering a couple wigs online through a company and I got to pick one and send two back. I also bought many of the caps and scarves that you can wear. After going through the wig process they seem like the easier way to go. Kyle keeps telling me I’m silly for just wanting to get a wig and that I should just wear the caps and I’ll be beautiful no matter what. I know he’s trying to help me and be supportive but I also think that it’s going to be traumatic for him to see me without my hair is well. The first day my hair started falling out was hard for both of us we ended the day in tears holding each other. He said to me that he wished that he had stroked my hair more in the past. This was something I hadn’t even considered I didn’t even think about the fact that he might miss stroking my hair. It’s going to suck not to have hair. I feel like it will be like wear a large sign on my head that says I HAVE CANCER.
Honestly, when this all started I looked up online why you loose your hair with chemotherapy. Because honestly, I didn't know that the hair loss came from the drugs and not the actual cancer. What I learned was that the drugs in chemotherapy are aimed to quickly destroy any cells that rapidly divide. That's awesome for its use to fight cancer cells, but unfortunately it also kills other healthy cells that divide rapidly, like the hair follicles. And did you know that it actually hurts when you start loosing your hair? I thought I was crazy but my scalp actually started to ache because it was going through so much. I literally had to ice my head. However, once I cut my hair short the pain began to stop. I still haven't brought myself to shave it completely off and Im holding on each and every strand of hair I have left. I know eventually it will all be gone but for now I needed to hold onto the little bit of "normal" that I had left.
Lately, health wise I have been feeling great (besides the whole hair thing). My doctors said that in the last week my labs have bounced back from the first round of chemo tremendously. They are still debating when to start the second round of treatment but all I know is that on a day to day basis I have been feeling better than I have in a long time. Even though I have been feeling better, Kyle and I have gone through some tough times recently. We were trying to preserve embryos before the cancer progresses even more, and we were recently told that unfortunately, my body was not responding to the treatment, and therefore we had to stop all fertility progress. This was a hard day. I had been poking myself every night for two weeks straight with 3 different shots in the hope that there would eggs there for them to retrieve. Unfortunately no matter how many shots we did or how hard we prayed, my body was not responding. The doctors told us it looked as if I would not be able to have any biological children because even though I have one ovary left, the chemotherapy is so intense that it will likely wipe out any remaining eggs that are left. That right sentence was even hard for me to type and I still haven't quite processed what that all means. How can my God not only give me cancer but also take away my chances at having a child? I have always wanted to be a mom. I literally work with children every day and LOVE what I do. Before getting cancer I was already planning out the next year or so and looking forward to Kyle and I starting our own family, and now that was ripped away as well. I also know that the door for me to be a mom is not closed. There are still things we can do to make sure that one day we have children, even if they are not biologically ours, but still the sting of that realization hasn't quite set in. Maybe it's the state of denial that I have been living in lately, but Kyle and I both agreed that for the time being we need to focus on kicking cancer's butt. Then we will cross the fertility issue once I am clean and in remission. So for right now the fertility issue is being put in away in a box and I will deal with it after all of this. This is something that I can't find the positive side in right now and to be honest, I am not sure I ever will. All I can ask for right now is that one day God will show me the path to my family and that I will still get the chance to be a mom.
However, in the past week I have had some tremendously good days physically. I was able to get together with my friends this past weekend and they threw me a "cancer sucks" party. It was great to see everyone that day. We even had a banner made and everything. However, by the end of the day I was exhausted. To be honest I felt like all day I put on a happy face that everything was fine and I could still be normal. But by the end of the party I realized that my friends all got to go home and leave and I was still stuck with cancer and the reality of the fact that it does suck. It sucks that I have spent over a month in the hospital and that in the next few months I will be back there many more times. It sucks that I have to give up the chance to have biological children. It sucks that I have to give up my job for the time being. It sucks that I am not able to do the things I could do before all this. It sucks that I have to take so many medications just to make me feel semi normal. It sucks that I can't take care of myself in the same way I once could. It sucks that I have cancer at 25 years old and that there is no cure for it. It sucks that for the rest of my life I will have to live in fear of it coming back one day. Having cancer just sucks but I have to remind myself that even in the bad days, that I CAN do this and I WILL beat this.
Well I have officially spent almost a full two weeks in a hospital bed. It’s not a great experience for any of you who have been fortunate enough to not have that happen to you. Thankfully, I am home now and finally feeling much better. I have also officially finished the first round of chemotherapy. The chemo doses I will be getting throughout this process are six chemo drugs given to me over the span of three days. So all you second grade math people out there, how many drugs do I get per day? Correct, two rounds of chemo a day. For three days. Sound like a lot? It was. Three long days of feeling drained and waiting to see what new side effect would take place. The names of these drugs are so overwhelming and the side effects are so detailed but I honestly couldn’t even think about them when the pharmacist came in to tell us about it all. I told him that I wasn’t feeling good and I had asked them to take it in the hallway and talk to my family about it instead. They did a great job of knowing which ones are which and also which side effects we need to look out for without having to scare me too much. I also never knew that chemo can look so different. Some come in small IV bags and some come in large bags. One of them was even in a red tube that they push through my port. It also is a little overwhelming to see the nurses get ready to administer the chemo. They have to wear certain gowns, masks, gloves, and even eyewear to administer some of the drugs. It’s so interesting that there can be so many different ways of fighting cancer and that not everybody’s treatment is always the same. Before this, I had the impression that when you received chemo you were going to be in a room hooked up to one small IV bag that would drip over your arm for about an hour and then you would go home. Now that might have been how some people‘s chemo has gone but it is certainly nothing like mine was. Since my chemo is so intensive I will most likely have to be hospitalized each time it is administered. That means at least a 3 day hospital stay at the beginning of the next 6 months. I told my family it was probably about time we bought a parking pass to the hospital garage. They didn't think it was as funny. It's hard not being home but I need to do anything and everything possible to get back to normal.
Over this past week in the hospital I really missed out on a lot of events. Biggest one being the Fourth of July. This year for the fourth I essentially slept all day because I was feeling so nauseous from the third round of chemo which was not going very well. At the end of the night my family found a bridge connecting different hospital wings where we could set up my wheelchair to watch a firework show with the Arch in the background. Pretty soon the sky was lit up with fireworks and it was absolutely beautiful, but there was still something missing. Since we were in the bridge tunnel, we couldn't hear those loud booms and cracks that you can normally feel pounding down in your heart. I realized at that moment that this feeling is going to be like a lot of the things that I will be missing out on in the next few months. I will miss out on the booms and cracks of life while I just go through the motions of watching the next few months slide by, counting down my time to finish my chemotherapy. While I was watching those fireworks, I turned and asked Kyle through my tears if these will be the last Fourth of July fireworks I will ever see. He squeezed my hand tightly and said that that would never happen. He told me that next year we will be right up front at a show with all the booms and the bangs and be able to feel the excitement of every firework again.
One of the biggest questions I’ve gotten from all of this is "how are you at peace with God with this diagnosis?". To be honest I’m not quite there yet. I’m still really angry that he gave me this disease that he did. However I need to find comfort in something because I know that he’s a big God and my anger is a small part of his daily life. He can take on my anger and my family's anger for this disease. People tell me day after day that they wish that they could take away a piece of the disease and put it in themselves. But honestly, I don’t wish that on anybody. I would feel terrible if someone else I knew had this type of disease. I believe that God knew that I could handle it more than others and gave it to me for a reason. I’m still trying to figure out what that exact reason is, but I do believe that there is a reason for why he did it. But it is hard. I miss out on so many things in life and it has only been a month since I found out I had cancer.
Over the past week in the hospital one of the hardest things for me has been getting on social media. I can barely do it anymore. It’s not because I don’t like to see peoples' happy faces or the happy things that they’re doing, but they remind me once again of the things that I cannot be doing. I wish I could’ve had a summer barbecue with my family at my house. I wish I could’ve taken my dog to the lake or even just on a small walk. It’s sad to see that people that are my age age get to go on living their lives where we're stuck in a hospital bed on a constant rotation of days being poked, prodded, and stuck with needles. Don't get me wrong, my friends are very supportive. They all text me and come see me when I have time, but at the same time they got to spend their Fourth of July shooting off firecrackers while I spent mine getting my first round of chemotherapy treatment. Now I am so happy that my friends do not have to go through this and I would never ever wish this on my worst enemy and I am so excited for them as they get to experience life. Currently three of my very best friends are engaged. One of them even got engaged on the Fourth of July and I’m so happy for her. Talking about the wedding planning with all three of them is a welcoming distraction. But in the back of my mind I know there will be times were I won't be able to be there for them like I used to be. When I was in the hospital during my chemo treatment one of my best friends stopped by to ask me to be her bridesmaid. This was something we had dreamed and talked about since we were freshman in high school. However, because of the chemo and the drugs I just wasn't there mentally. I practically fell asleep while she was there and woke up feeling absolutely terrible about letting her down in that way. However, I know she understands and like all my friends they support me through all this. She gave me a bracelet that says "I can and I will. Watch me" and I wear it every single day to give me hope through all this. In knowing all these events are happening and knowing that I may not be there to fully support them I also am reminded of my previous post that God has given Kyle and I the blessing of already going through the wedding process while I was healthy. I know see now that it’s other people’s turn to have that excitement and that it’s my turn to stand in the background and cheer them on in the best way that I can.
Ever since Chemotherapy has officially started I have felt a lot better about my prognosis. I feel as though I am doing something to fight back this horrible disease. Over the next six months I will be getting chemo at the beginning of every month and then taking the rest to recover. The biggest scare is my immune system which I had no idea it was such a big part of chemotherapy. You know that you’re not even allowed to be around fresh flowers on some of these chemotherapy drugs? A lot of little things in my life I’m going to have to change. The biggest one being around children I know that that’s going to be hard but after the six months is over and I can regain my knee and system fully I will be right back to where I started this whole thing in the classroom ready to teach ready to learn from a new group of 21 second graders
I have got to say that I was shocked to see that my blog was viewed over 1600 times with in its first day. That was an incredible feeling to have the world know what I was dealing with and not have to hide it anymore. I also loved that several people I haven't talked to in years stepped out of the woodwork to offer their support and kind words. I felt lifted up and so supported, and then the next day, I ended up back in the hospital.
Currently, I am at the Siteman Cancer Center in downtown St. Louis. I was having a difficult day on Friday, a full out "I can't do this day," which I happened to say over and over again through tears and in between vomiting into the toilet. You see on Friday alone I had my port put in for chemo, had a CT scan done, and an MRI scheduled. In between all those wonderful things I started to get terrible stomach cramps and was vomiting consistently. I ended up going to the cancer care clinic around 8:30 at night where they realized that I had a partial bowel obstruction. They admitted me into the hospital and I was able to feel a lot better once they got the medication under control. I will mostly likely remain in the hospital for several days. Its funny because in all my 25 years I had only been to the hospital when I was born. Since then I have never gotten so much as a bee sting or a broken bone. In the past 2 weeks though, I have spent a total of 7 nights in the hospital so far and know that number will just continue to rise.
However, I know that nothing- not the probing fingers, painful needle scans, scars from surgery, or even waiting on test results, can separate me from the love of God. Since hearing the "c" word I have been struggling with my connection with God. Why would he give me such a terrible disease when I am so young and healthy? The only comfort I can find during this time is knowing that every part of us down to the very DNA in our cells God put together in the very beginning. So yes, he knew that some of my cells were going to go astray, leaving the intent that they were created for and instead following their own path. I also believe that God knew these cells were multiplying in me long before I even sensed the first feeling of pain.
You see, looking back on my life over the past two years, I have been blessed with so many things that I now find comfort in today during my struggle. First and foremost, God allowed me to find young love and get married when I was only 24 years old. At the time, people thought we were crazy for getting married so young, but I knew in the back of my mind that it was the right choice. Having my husband by my side today is one of the best parts of all of this. Kyle is so supportive, kind, and all seven nights in the hospital he has slept right by my side (in some very questionable reclining chairs). I cant help but think that God brought us together when he did so that we could have one strong year of marriage between us before beginning on this journey. No 25 year old guy wants to spend the majority of their summer in the hospital, but Kyle does so without complaint and with a smile on his face almost every day.
Second, God allowed me to move back to my hometown even though at the time I wasn't grateful for it. You see, about a year ago, I had to quit my first teaching job in Columbia, Missouri and move back home to St. Charles. I was devastated at the time because I loved the school and environment I was in there. Kyle and I had to move because he had gotten a job in St. Louis and our families were both from there so it made the most sense to move home. I found myself teaching the next year at the same elementary school that I attended as a child. And let me just say: yes it was weird. Some of the same teachers that I had are now my colleagues, and my old principal is now my boss. However, looking back now, I honestly believe that God led me there so that I could not only grow in His faith as a Lutheran school teacher but also find a massive support system who are willing to go above and beyond in their support for me. I'm sure the number of prayers coming from the Zion Lutheran School community alone is making God want to put on earphones.
The second part of our move to St. Charles was to be closer both sides of our family and honestly now if we wouldn't have moved, I don't know how Kyle and I could have been doing all of this by ourselves. I have seen my relationships with my siblings grow over the past year as well. Growing up, my sister and did not always have the greatest relationship. I have to admit that I did in fact steal her clothes at time. However, last year my sister was the maid of honor in my wedding and I can honestly say through that experience, she has become one of my best friends. Today she rarely ever leaves my bed side, takes notes at all my doctor's appointments, and makes sure that I am eating and sleeping alright. Overall, my whole family is with me every day be it at the hospital or at home. Their support means the world to me. Without their constant encouragement I would not be in such a positive spot that I am. After I was diagnosed with cancer, my grandma jumped on a plane and spent the last two weeks by my side. Since she has battled cancer three times, her constant bravery and strength have given me nothing but positive vibes as I go into my own treatment. I have also seen how this type of tragedy can bring together both sides of the family. Kyle's mom, brother, and my future sister in law have treated me as if I am one of their own. Their love and support is so great I could not ask for much more.
The third comfort that I can find at this time is in my puppy Luna. Funny story about her, my Dad joked with Kyle and I after we got married that it would take only a month before I started asking about a puppy. At the time, I told him he was crazy, but within four weeks of the wedding, I was already nagging Kyle about when we were going to get a dog. He initially said that he would be okay with a dog in the summer of 2019. I took that as if he was saying I could get one whenever and decided for myself to get one in January (still 2019, just a little earlier). And thank goodness I did because if we would have waited until the summer of 2019, we would never have been able to have the joy of Luna. Each night when I am home she jumps on my bed and brings me such comfort and at times laughter when she decides to eat my socks.
The last sign that I saw that God knew this was coming is that he waited until literally the last day of school before letting me know that I had a serious medical issue. The last few weeks of school I had been feeling some pain, but being with my kids allowed me to push through and live each day in the joy of being their teacher. Then on the last day of school, instead of going to the pool, I went and got an ultra sound done, confirming I had an ovarian cyst. To me, the ability to avoid having to tell my students about what was going on was impeccable timing on God's part. I could focus on myself over the summer and eventually when my students did find out, it was through the comfort of their own parents telling them and they never had to see me suffer.
I truly believe that in all of these things I can see God's love as he tried to set up my life as well as possible before this disease hit. I still struggle with why I have this, but I know that he is preparing me for something bigger. Cancer doesn't cripple the love of God, it just makes it look different. God loved me from the beginning, he loves me through this disease, he loves me as I travel in and out of the hospital, and I know that God will love me to the end of this no matter where it will take me.
As I sit here today in my hospital bed, I don't know what is going to happen next. I don't even know when Im going to be home next. The doctors aren't sure what the best form of treatment is next. We are currently gathering doctors to share my case with in order to ensure I have the best possible treatment. However, within that comes some waiting in the communication and time it takes to get results back. Right now, it looks like next week I could be starting chemotherapy earlier than expected. This might put the fertility track on hold, but I have to believe there is a plan for that as well. I do know that wherever I go and whatever I do, God will prepare the place for me and allow me to use the small comforts he has set in my life to get through this.
Do me a favor. Google "Inspirational cancer picture." Take a look at all the rows and rows of pink cancer photos and breast cancer ribbons. When you think of cancer on of the first things that comes to mind is a pink breast cancer ribbon. I think that it's amazing that this form of cancer has so much recognition and movement behind it however, I have also realized that when I tell people that I have cancer one of the first questions out of there mouth is "Oh is it breast cancer?" That happened to me yesterday when I went to my last hair cut. Here I was sitting in tears, telling the woman who has cut my hair since I was little that I wouldn't be coming in anymore because I was starting chemotherapy in July and I would be loosing my hair, and the first thing she asked was if it is breast cancer. Then comes the awkward part of saying well actually no, I don't have breast cancer, I have what's called small cell carcinoma of the ovary hypercalcemic type or SCCOHT because who doesn't need to abbreviate that one.
Now I want to clarify that I know breast cancer is a serious disease and my grandma has battled it three times. In no way am I trying to belittle that form of cancer. I just want to point out that there is so much attention to that form of cancer that when you have another one it feels as if not only do you have to explain you have cancer but you have to yet again explain the type and form you have. And then when we talk about something as personal as your ovaries no one wants to talk about that area of the body. I mean, I love my husband to death but I think every time he hears the word "ovary" I can still see his cringe a little bit. Because it is, its awkward to talk to perfect strangers about your ovaries.
Heres some statistics I found in my brief research on google, for a woman the chances of getting breast cancer is around a 1 in 8 chance (about 13%). The chances of getting ovarian cancer 1 in 75 chance (about 1.33%). AND the type of cancer I have only accounts for about 0.1 percent of ovarian cases. These means there have only been about 500 cases total in the United States ever. So tell me how do you explain that to someone when they ask you what kind of cancer you have? That's why I started this blog. I wanted to be upfront and honest about my journey because it's going to be a long one.
But there is a reason I named this blog Actually I Can. Whenever I go down the negative path of thinking that I can't do this because it's not fair or not right I stop and think "Actually I CAN do this." So far in this journey there have been days were I am completely defeated and days where I am completely filled with strength. Today was one of the good days.
I have felt like since we have heard the news about the cancer we have been waiting to get the ball rolling for treatment. First, we had to wait for the pathology to come back to find out the type of cancer and then we had to find the right doctors for the job. This morning I woke up and had a good cry and had to go into work and tell them that I wouldn't be able to come back to teach this fall. This fact alone still makes me tear up. I love my job. When my doctor told me I needed to take time off because of the chemo and my immune system being compromised by the sick kiddos I cried for a good while. My husband told me that if he was told he had to quit his job he would cry out of happiness but here I was crying out of sadness for the kids I wouldn't be able to teach this fall. That was a really hard pill to swallow in all this. Thankfully, my job is very supportive and would do anything to be there for me and my family. After leaving that conversation I was at home waiting to hear anything from the doctors. Thankfully, today not only did I hear from them but I also was able to meet with them today. My some miracle they had an opening and I got to march right in and they laid out what the next few months of my life were going to look like.
Ever since finding out what kind of fun rare cancer I had, my doctors and I have been trying to figure out where the best place for treatment would be. We had tossed around MD Anderson and the Mayo Clinic. At first I was willing to go other places for treatment because I was willing to fight this any way possible. But then the reality of what that would mean began to set in. Weeks away from home and traveling back and forth after chemotherapy was beginning to be more and more daunting. However, today I got the news that the best possible treatment I could get could be done here in St. Louis. That was a huge victory in my book. I still will have to have six rounds of chemotherapy over the next 3 months and will be needing follow up surgery, but I get to sleep in my bed and have my support system (and my dog) close as well.
We also got to meet with a fertility specialist today to begin the process of freezing my eggs so that if I loose my other ovary I still have a chance of having children. This meeting was the last place I thought my husband and I would be at when we are only 25 years old and haven't even began to think about having kids. But it was a positive meeting that gave me hope for the future.
In the next few days I have so many doctor's appointments and scans that I barely have time to breathe. But today I am filled with the hope that God is good and even though I am still struggling with why he gave me this disease today I know that he gave me a plan and doctors who will help me fight this battle and come out on top.
It has been 9 days since I have heard the words "You have cancer" and since then it hasn't exactly set in. I have to admit that before all this I used to think that if I ever had a major disease that it would be a lot more dramatic. I pictured how my family would scream and cry and hold my hand and tell me everything would be alright. In reality that was not how it happened.
When I heard the news I was sitting in a hospital room, having just had major surgery, I was surrounded by my family, and they were in fact holding my hand, but when the doctor said those words "You have cancer" I swear they didn't even flinch. It took me a moment to react and I had to clarify again that I did indeed have cancer and I wasn't just hallucinating on the drugs. I asked the doctor probably two more times "So your saying I have cancer?" "You're sure that this is cancer?" Both times he answered yes and both times there was no weeping or dramatic music playing in the background. I wanted to scream at them "Didn't you hear what the doctor just said? I have cancer! Cancer! You could at least act surprised!" But I didn't. I just sat there like the good little patient I was and pretended to listen as the doctor laid out what was going to happen over the next week. At one point during the conversation it hit me. My family already knew this before the doctor had walked in the door that morning.
See the night before I was rushed into emergency surgery for a large ovarian cyst, after the surgery the surgeon informed my family of my diagnosis. However, since it was late at night and I was already out of it he told them to wait until the next day to tell me the harsh reality of the situation. I can't even imagine how hard it was to know this information and keep it a secret from me. Especially since the first question I asked them when I woke up was "Was it cancerous?" Thinking back on it now I understand their decision to wait to tell me the whole truth. Even with it being the morning after the surgery I still struggled to understand my prognosis. How could I, a healthy 25 year old, have cancer?
Well it turns out its not as uncommon as you think. The past few months I had been having severe abdominal pain. After being bounced from doctor to doctor, ER to ER, and having numerous blood tests, one smart doctor finally recommended that I have an ultrasound done. Low and behold I had a large ovarian mass on my right ovary. Of course once I went to my OBGYN she told me that she would only operate if the cyst was 10 cm large. Want to guess how big my lovely cyst was at the time? Yup, 9.5 cm. So there was nothing I could do. I left her office with the advice of waiting for six weeks to see if the pain would go away on its own. However, I could barely even get through a day without taking half a bottle of Advil and practically wearing my heating pad around the house. There was a voice in the back of my head telling me to get a second opinion.
The second doctor gave me a lot more hope. She admitted the fact that it wasn't going to go away on it's own and she said she would contact me to schedule the surgery. I left her office feeling much better supported and like we had a handle on the situation. Then I got the scheduling call, the first available date they could schedule me? 4 weeks away. I was shocked but I took the date anyway feeling relieved that I would at least have the pain taken away. However, as soon as I hung up the phone I immediately felt an overwhelming sense of panic. Four more weeks of this pain. How was I about to stomach that. Again I felt defeated by the medical system and felt as if no one would ever understand the pain and discomfort I was in.
About three days after scheduling the surgery I was out to lunch with my dad and sister. As usual I told them about the pain I was experiencing that day and my dad told me that he was going to call the doctor immediately to see if he could get a better answer. I was mortified. Here I was a married, twenty five year old having her daddy call her doctor because she was too scared. My father has always had the "bull in a china shop" mentality when it came to waiting. He seemed to think that if you put enough pressure on anything you can get a better answer. I however would rather run and hide than tell someone that I was unhappy with what they were telling me. Looking back now I can say that phone call saved my life.
Immediately my doctor told me I should not be experiencing that much pain and should go to an ER immediately. When we arrived they did another scan of my cyst to find that it had grown from 9 cm to 13 cm in two weeks. Immediately I was transferred to a bigger hospital, where I was told the oncologist would likely remove the cyst as well as my ovary. They told me there was a risk of the mass being cancerous but I was more concerned with the size of the scar that this would leave on my body. Within a few hours of being at the hospital I was undergoing surgery where they did find the mass to be cancerous, they did remove my ovary, and they did leave a large scar.
Never in a million years did I think this would be the situation I am in. All I can say at this time is that if you think there is something wrong SPEAK UP. If no one is listening to you SPEAK LOUDER. Don't be afraid to take charge of your own medical needs. If a doctor isn't listening to you fully, go to another one. If I wouldn't have listened to my dad that day I would have had to live with cancer unknowingly for another few weeks. Luckily for me they found it in time to keep it from spreading to my lymph nodes and other areas. However, if I would have waited my turn in line for surgery, who knows what they would have found. My journey is not over. Even though the cancer is technically out, I still have a chance it could have left behind cells that will soon multiply and attack my body again. I plan to keep you updated on my journey and I hope that you can learn from my story and be an advocate for yourself and speak up if you know that there is something wrong with your body.
My name is Kimber Graham and I have 25 years old. I am a second grade teacher, been married for a year, and have a six month old puppy named Luna. Oh and I have ovarian cancer. This blog is used to document my journey through this time. It may not be perfect but it is honest.