(This is a long post)
I’ve wanted to restart my blog entries for awhile now. I have a list of topics to share and I know what I want to write, but I’ve been holding back because I haven’t known how to link the past with the now. I haven’t known how to talk about the elephant in the room; this year’s cancer diagnosis, and where I am now, cancer-free and joyful.
I didn’t want to put people off by talking about a difficult time. The subject of cancer, or any serious illness is generally not considered to be a happy topic. Honestly, it was a downright bummer at first. Cancer has this reputation of doom and gloom, of death and dying, and of hopelessness. My blog has always been about hope, love, caring, moving forward, and joy. And while I am fully embraced in that mindset now, I didn’t know how to write about all of the great things I’m learning about me without sounding weird. I thought if I talked about the tough stuff it would take away from the hope I was trying to share.
I talked to my hubby, Greg, about this and his passionate answer amazed me. He said “You have to talk about this. You have to share everything you need to, to move forward for yourself. You have to let people know that while this disease is bad, you can survive it. You can help other people and help yourself. I don’t think you can go forward in your blog until you take the time to talk about where you’ve been.”
He was right. I do need to talk about it. It’s part of me. And a big part of why I am excited about life now. So, if you don’t want to read the rest of this post because talking about cancer makes you feel sad or uncomfortable, I’m okay with it. Just know what that I have learned through this journey, and things that I’ll share in future posts, transcend this one illness and apply to pretty much any situation. These are more than “cancer” lessons. They’re life lessons that can be used whenever.
Ok. Here we go.
I had ovarian cancer. I say had because right now I am at what my doctor calls EOD, or at “end of disease.” It means that there is no visible sign that I have cancer. Is it possible that it could come back? Sure. Maybe, maybe not. I don’t know. But right now, I feel great (I still am dealing with the side-effects of the treatment but those are minor issues). I have no pain and no physical symptoms of my disease. In a couple of days, I go see my oncologist for a 3-month checkup. I’ll do some bloodwork before the visit. I’d be lying if I said that I don’t have some stray worrying thoughts niggling in the back of my brain, but that’s to be expected. Its new territory for me; getting a wellness check.
Ovarian cancer, as a rule has a high death rate. This is mainly because when a tumor develops on an ovary, it’s also exposed to the warm, inviting atmosphere of the abdominal area. It has a lovely place to grow and develop and share its cell buddies. My situation was a little unique. I had a cyst on my ovary. Usually, cysts are benign. The body will just reabsorb them an no surgery is needed. But when they don’t get absorbed, and they continue to grow, they need to be surgically removed. Most aren’t cancerous. My cyst grew to be a huge size, roughly 30cm in diameter (or the size of a basketball) and weighed 36 pounds. Inside that cyst was a small, malignant tumor.
I know, I know, how could I have let it go so long without doing anything about it? How did I not know there was a problem? I’ve been asked that hundreds of times and my usual answer is that I’ve always been heavy; I had been be dieting and losing weight and didn’t notice anything was wrong until my stomach started getting bigger.
That’s mostly true. But deep down inside, I knew there was something wrong before then, but I was just too scared and too stubborn to face it. You see, my sister and our grandmother died from complications with breast cancer. My mom had two bouts of lymphoma but survived them. I had always had the thought in the back of my head that I would probably have cancer one of these days, too. And while I knew something was wrong inside of me, I was afraid that if I found out, my wonderful life with Greg would change and everything I loved would go away. I had waited so long to meet my soulmate and I was so blessed to have him in my life that the thought of having that time cut short paralyzed me mentally.
Note to readers: Please don’t do as I did. It is not a smart choice to ignore your body’s signals. Everything has a better chance to heal when it’s caught early.
After all of that, I have to say that my fears were totally unfounded. While this year was incredibly sucky in so many ways, my relationship with Greg, which was always strong, has only gotten better. We had to lean on each other and really acknowledge our strengths and weaknesses, which only made our bond stronger.
So, back to my story.
My oncologist was able to deliver this bouncing baby cyst intact. This was hugely important part of the process to containing the disease and I am forever grateful to him for his skill. I was repeatedly directed by several doctors to see him and the fact that he was willing to take me on, was a Godsend. Dr. Lim took pictures of the cyst for posterity and educational purposes. He wanted me to have copies. He even offered to transfer them to my phone. But honestly, I just wanted to get that scary thing out of my life. Dr. Lim said it was like delivering triplets. With that thought in mind, I had the urge to name my cyst, not because I was mentally attached to it, or that I was grieving, but because by naming it, I was giving it an identity. I could let it go. It was its own being and no longer a part of my body.
I named it Wilson.
As I said earlier, Wilson had a malignant tumor inside him. Because of that, Dr. Lim wanted me to have chemotherapy, “just to be sure.”
Chemotherapy! I was terrified. I was so beaten up from the disease, the surgery, and the malnutrition. Wilson took up a lot of space and I wasn’t able to eat very much. What I did eat, went, in part to his “feeding” and away from sustaining me. The thought of chemo seemed to be just too much. I also had an unexpected return trip to the hospital for treatment of a blood clot that formed after surgery. All I could think of was “Oh, great, on top of everything else I’m going through, now they want to poison me!” For a while, I didn’t think I would survive it. Fortunately though, I had enough presence of mind to visit my general practitioner. He’s a great doctor and a wise man. He took the time to go over all of my records and really helped me understand why I needed to do this and that I would be well cared for through the process. He listened to my fears and helped me figure out the best choice for me.
That was a real turning point and a reality check. I had to get real about just what was wrong with me: that this illness could have killed me and still might. I wasn’t done. I still needed to fight this thing and I needed to find strength for the battle. I didn’t know where that strength would come from, but I was determined to find it. Knowledge is strength and so I looked for answers.
I looked on the internet.
Everyone looks on the internet
Don’t look on the internet.
The internet is a great place to research for your hobbies, interests, and what your favorite movie star is up to, but not for your personal health. A lot of the information is old, won’t apply to your situation, or is just plain wrong. I was in tears for days after reading cancer and chemotherapy horror stories on the internet. I looked for specific incidents of my type of cancer and didn’t find them. I’d get directed to other sites and I would read those and cry. Don’t look for answers on the internet. Ask your doctor for information. Ask the hospital nurses. Go to the hospital cancer resource center and read the books they have. Take a class.
My hospital has cancer classes. They are all free and address things from nutrition, skin care, dealing with finances, meditation, and so on. I took a few different ones. Most were helpful. One class I didn’t like was the chemo education class. I took it right before I started treatment. I wanted to know what I was heading into with chemo, but the vast amount of information scared and intimidated me. I don’t think I was in the right mind set to deal with the way it was presented. It scared me. The class had people with so many different cancers and they tried to cover everything, for everyone. They went into detail about the toxicity of every possible medicine you might be prescribed for every possible cancer, every possible reaction you might have to them, and how some of these terrible things could be permanent. A few of us looked shell-shocked when we left class. It might have been good information, but when you aren’t in a place to receive it, you won’t benefit from it.
They did give us each a booklet though. And in the booklet, I found my particular medicines and side effects. When I had calmed down, that info was helpful. The booklet also had a section on how to prepare for chemo; items to bring, questions to ask, and what to wear. These were things I hadn’t thought about. I felt like I had my first little bit of control about my care.
I made a “chemo bag.” I picked out a fun looking tote bag with a panda face and filled it with puzzle books, headphones, snacks, drinks, my phone charger, and a craft project. Greg made sure I had all of my favorite music on my phone. It felt like a secret party bag. I held on to that thought and that bag when I headed out to my first treatment.
Before that first treatment, I had to have a port installed. Not everyone getting chemo needs one, but I had been stuck in the arm by the staff so many times during my hospital stay, my veins cried “uncle” and flattened out. My IV kept falling out not even hot packs and the ultrasound could coax them out of hiding.
So it was another surgery. Granted it was out patient surgery, but I was a stressed out mess by the time I started chemo.
Greg took me to my first infusion. I was a bundle of nerves, worrying about being late and wondering what my treatment would hold at the same time. He was strong. He was a bulwark through this whole adventure. My success with this journey is in no short part because of the man he is. I knew he loved me and would stand next to me, no matter what I looked like and no matter how tough things got.
The chemo infusions were generally 8 hours long. That was a lot more time consuming than it is for most patients. My body had a reaction to the combination of drugs and so the medicine had to be given super slowly. But the nurses were great. They constantly checked on me, monitored my vitals, made sure that side effects were minimal.
Speaking of side effects. One of my concerns, and what is frequently talked about in regard to chemotherapy, is the onset of horrible nausea. I had none. My doctor explained that they have come up with a way to battle the nausea using a combination of medicines. In my case, I had two anti-nausea medicines to take. I took pills the night before, and the morning of my chemo treatment. Then prior to receiving the actual chemo meds (for me that was Taxol and Carbo) they gave me infusions of Pepcid, Benadryl, Zofran, and Dexamethasone to combat any nausea or allergic reactions. The day after treatment, I took the two anti-nausea meds alternating every 3 hours for the next 4 days. By day 5, generally the feelings of nausea are gone, and you stop the meds until the next treatment cycle. The goal is to prevent the nausea from ever starting. It’s easier to prevent nausea than it is to stop it once it’s started.
I’d also heard that extreme weight loss can be another side effect. What you don’t hear much about is weight “gain” from chemo treatment. If happens a lot with female reproduction cancer treatment. I gained 30 pounds during treatment! I was not prepared for that. I didn’t handle that well. Remember, I had been working hard at losing weight before I got ill. But the Dexamethasone is also a steroid. It makes you hungry, hyper, retain fluid, and keeps you awake. I didn’t find out until my third treatment that I was getting packed with steroids. By that time, I was stressed about my weight gain and inability to sleep. The doctor made a few changes in my meds. It helped, but the weight gain and fluid side effect stuck around.
There were other side effects. Neuropathy and chemo brain seem to be the two that result from chemotherapy regardless of what type of medicine you get. Both are real and last way longer than the treatment does. It can take a year to get back to feeling a normalcy.
Then there is the hair loss. I know that hair will grow back, but when you are going through cancer treatment, losing your hair can be devastating. It’s a part of feeling feminine. So much of a woman’s identity has to do with her hair. And when you’ve had surgery and your body is changing, the hair loss is hard.
But (and this is a big but), all of these things are temporary.
One of the ways I got through this journey was by keeping that thought at the fore front of my mind. When I went to treatment, I tried to keep positive. I focused on how pampered I felt. It’s hard to complain when you have a comfy adjustable chair to relax in, a tv at your fingertips (and no one to fight with over the remote), as many snacks and healthy drinks as you want, and preheated blankets. I remembered thinking that it was like being in first class on an airplane. When I would get the achy legs at night, or the hunger attacks I focused on how these were just short-term things and they would pass. I had my treatments every 3 weeks for 6 cycles of chemo. The first week I was really tired, then I would get my strength back over the following 2 weeks. On those days right before chemo I would go to the library and stock up on mystery books to read. I’d prep my snacks and meals so that I could just heat and eat something easily when I was too tired to cook.
I still tried to do fun things. Sometimes that meant resting a lot before and after going for a walk in the yard, but it did wonders for my well-being. Sometimes I had a lot of energy and I did house projects. Sometimes all I wanted to do was sleep. I know that was confusing for my friends and family. They didn’t want me to be too worn out and they worried about my health. They were wonderfully caring and supportive, even when they didn’t know how help me.
It was frustrating at times, as well. I felt caged being at home so much. When I did go out, it was to the hospital to do tests, go to a class, or to see my doctor. Sometimes I would just go for a drive, or do a quick store run to get something I didn’t need, just to get out. I felt like everything I wanted to do this year was taken from me. I’d yell at Greg about how he was being overly protective and crowding me. Then I’d want to hold him like my life depended on it. I was a mixed bag of emotions, happy, sad, afraid, and sometimes powerful. But with just a few minor exceptions, I stayed in tune with what worked for me and kept me centered. In the long run, the chemo went well. I found ways to stay somewhat active and in touch with life.
I was also focused on my cancer fight. With each treatment, I knew I was battling my disease. My tests were showing me that we were winning. It felt good to actively participate in this. I took ownership of what I needed to do. I looked forward to that last treatment date. I had a calendar that I marked big black x’s on each day that passed. At any time, I could tell you how many days were left in my treatment.
I finished chemo at the end of July. I was thrilled. I made it.
The next day though, I felt lost.
I found out later that this was normal. It’s a type of withdrawal. Like most chemo patients I’d put all my focus on my treatment. My days were planned out and structured. I did my treatment, crashed for a few days, regained my strength, worked through my side effects, had some bloodwork done, saw the doctor, then started the process all over again. Now that I was done, I didn’t know what to do. I didn’t know what I was supposed to do. I missed the nurses and the “regulars” I’d see all the time. I was also worried that I wasn’t healed. That perhaps more treatments were needed. I didn’t know. It was two weeks before I would have my CT scan that would tell me how I looked on the inside. I felt I needed to do something and yet there was nothing I could do.
It took a while, but I learned to figure it out. I had my CT scan and there was no sign of disease. I saw my doctor and he pronounce me at “end of disease.” I was in a hurry to get back to my old self. Then I realized my old self would be a little different now. It would take time to regrow my hair, regain my strength, and get the numbness out of my feet. But aside from that, I was changed inside. The way I looked at life, the value of my time, how I viewed my relationships, and what was important to me, had become more defined.
Just so you know, I’m not fond of the phrase “the new normal.” I know that the thinking behind it is that since the cancer has changed your life permanently, you’re adjusting to doing things differently. It supposed to be an empowering phrase. But to me, a new normal means that my normal is less than it was, that I am less than I was. I’m not. I’m stronger. The way I see my cancer battle is that it’s another chapter in my life. It’s a part of the journey. Sometimes the journey gives you scars; sometimes the journey helps you grow.
And knowing this, I’ve been able to move forward.
Everyday is important.
Everyday is a new chance to find my joy.