Tuesday, August 20, 2013

Slice and Dice Part 1

August 20th. The day I went into my first major cancer surgery. The day I entered a cancer hospital to stay for more than a doctor's appointment or scan. Another day that changed my life forever.

Five years ago...

It had been a crazy-fast week and a half. I was on the medication to help with my Stage I Uterine Cancer but the PET Scan had identified something small and unknown on my left kidney. After meeting Dr. D., my new-found urology oncologist, I had another scan. This time it was a CT scan of just my abdomen and specifically my kidney with the spot. Frustratingly, all that scan told us was that the spot needed to be removed. Dr. D. explained that the "mass" was definitely a tumor of some sort but that it did not appear to be problematic right now. It was far away from the ureters of the kidney (i.e., the plumbing from kidney to bladder) and it was tiny. He did say that 90% of all tumors on the kidney are actual kidney cancer but that, not to worry, kidney cancer is extremely slow growing and like 95% curable with surgery. He did not seem concerned at all about this spot and even told me that I could wait a year before having the surgery to remove it. Now, all this sounded great. I mean, another cancer, but a "good" one that is curable. All I need is surgery and it's fixed. Hooray. But...and it was a big but...he could not tell me what the hell that little spot actually was. We had a lot of statistics on our side about "most kidney tumors" but I wasn't going to gamble on what happens to "most people." Clearly, I'm not in that category. So, I pushed the issue. I told Dr. D. that I had already arranged my professional and personal life around a major surgery (i.e., a hysterectomy) that was not going to happen right now. I was also very hopeful that this medication would work and in a year I would have a new baby in my arms. So, a year from now was not that convenient for me to have a major kidney surgery. Dr. D. was awesome and worked with me and within days I was scheduled for a partial nephrectomy (fancy!).

Dr. D. then put the fear of everything holy in me about how awful this surgery was going to be. It was going to be a huge cut. It was going to be highly invasive. Kidneys are very difficult to get to and he was going to hurt me very badly. He kept repeating this over and over. Awesome. Then he said something that made me utterly freak. He was going to saw off one of my ribs to get to the kidney. Ummmm...WHAT? Like permanently?? Apparently, the way this surgery is typically performed, the surgeon removes (i.e., goes to Home Depot to purchase a hacksaw and saws off) a "floating rib" from your ribcage so he can have easier access to the kidney. I started to freak out. Like uncontrollably. I don't know why but I was suddenly very much in love and absolutely needed my rib. I started to shake and cry and started stuttering things like "are you sure you have to?" and "isn't there another way?" and "ugh" in progressively higher and more frantic tones. Basically, I was freaking out as much as I did about cancer in the first place. Over a rib. Over a rib that was only halfway attached to my ribcage anyway (thus why it is called a "floating rib"). Over a rib that, until 10 seconds ago, I didn't even know I had. But, it was the rib that broke the camel's back. I'd had it. And I wanted my f-ing rib.

Somewhere during my escalating insanity, Dr. D. broke in and told me that I could sign up for a clinical trial to try and keep my rib. He explained that they were testing to see if allowing a patient to keep their rib reduced their recovery pain after this type of surgery. I couldn't sign on the dotted line fast enough. I begged and pleaded to be put in the "rib group." I wanted my rib. It didn't have cancer. It never failed me. It deserved to live. I was going to lose a lot of body parts before this was all said and done, please for the love of everything holy let me keep my damned rib! Dr. D. patiently explained that I now had a 50/50 chance of keeping my precious, wonderfully meaningful rib because I had agreed to the clinical trial. He even went so far to say that the only reason he even told me about the rib removal horror was because there was a clinical trial possibility. So, people of the interwebs take a good, long look at your next surgeon and demand to know all the body parts s/he will be removing. Because they might not even tell you. They might just take. And you, like me, could lose a rib for no good reason.

If I am being perfectly honest, the days leading up to my surgery were all about my rib. I was a woman obsessed. I thought about it. I dreamed about it. I talked about it. I cried about it. I freaked out about it. I googled it. If you knew me during that time, I apologize for annoying the hell out of you...but seriously, it was just too much. I needed that rib.

Two days before surgery, I was called by a lovely nurse to do a phone intake and give me surgery prep instruction. She was somewhat amazed that I had just had a surgery with full anesthesia a month before. She made the comment that they like to space surgeries out more but that I was "young and healthy" so I should be fine. Awesome. I felt really young and healthy, you know, having a CANCER surgery and all. Anyway, she went on to give me all the details about my surgery, when to check in, when to stop eating and drinking, and how important sleep was before the surgery itself. Ha! I asked about my rib. I begged her to slip me into the rib group. She claimed she had no knowledge of such a rib removal event. Ugh. Then she gave me her oncological nursing blessing and pronounced me ready for surgery.

The day of the surgery is a blur. It was scheduled for really early in the morning. Like me and my rib had to be there at 5:30am or some such horrible hour. The boyfriend was calm and awesome. He held my hand and was soothing and promised me he would ask the doctor about my rib status right after surgery. I walked into Huntsman and proceeded to shed my dignity and climb into one of those horrible hospital robes and get poked and prodded with IVs and monitors and questions. I asked everyone who came in contact with me about my rib. No one had any answers. The doctor came in and explained that he was "going to hurt [me] today" but that everything would be fine. He smiled when I asked about my rib. I took that as a good sign that I was in the rib group. Please don't let me be in the no-rib group I begged him as he walked out the door. Then I started to be scared of the surgery itself. I was going under and they were basically going to cut me in half! The boyfriend hugged me and consoled me and I tried to remember to breathe. Then I was stripped of my glasses (which essentially leaves me blind) and I was wheeled into the darkness.

I still had this overarching sense of hope. I knew things were going to be okay. This medication was going to work and I was going to have a baby. Whatever they pulled off my kidney was going to be nothing. And I was going to keep my rib.

And that, Little Bear, is the story of my first cancer surgery...and my rib.

Til next time...Always and Ever After.




Sunday, August 11, 2013

August 11th

August 11th first became an important date in my life when I was 5 years old. It was the day my brother was born (Happy Birthday, Bud!). I had asked and prayed and asked and prayed some more for a baby brother. You see, my sister was pushing my buttons at that time...she got into my stuff and made a mess of my room while I was at preschool. So, my 4 year old mind thought, "If sisters make messes of my things then brothers won't because they're different." Flawlessly logical. So, when my mom told me she was having a another baby I decided it should be a boy. Every night during our bedtime prayers I asked God for a baby brother. I really, really meant my prayers so I was convinced that they would be answered. My poor mother sweated out 9 months of her 4 year old saying, "No, I prayed and asked God. I know He will give me a brother." She tried to convince me that another little girl wouldn't be bad, but I was having none of it. It was a boy. I was having a brother. And on August 11th...it was a boy.

There are some dates in our lives that just imprint on us. August 11th is one of those dates for me. First, my brother. More recently, there was August 11, 2011. Our Adoption Finalization with you, Little Bear. The day that the government put its stamp of approval on our family. The day that, no matter what, we legally became your parents. That was a good day...an amazing day...a perfect day.

Five years ago there was August 11, 2008. Things had started moving...fast. I had my first official oncologist appointment on August 4th. I was petrified. I had spent the last two weeks impatiently waiting for this appointment and when it arrived I was a wreck. I remember crying on the drive to Huntsman Cancer Hospital. I mean, I was going to a CANCER HOSPITAL. The otherness was strong...this can't be happening, this is a dream, for the love WAKE UP, MALINDA! But no, after what seemed like a few seconds we were pulling into the parking structure, telling the attendant we had an appointment, getting our parking pass, and walking into the building. I actually stopped in the middle of the parking lot before we got to the doors. The boyfriend asked me if I was all right and I just stood there, staring at the large block letters above the door: Huntsman Cancer Hospital. I started to shake and tear up. But he took my hand, told me everything was going to be alright, and together we walked into a very different world.

I can tell you exactly what I was expecting during that first visit. I was expecting the oncologist to come in, tell me I had cancer, and schedule my surgery to fix it. I didn't know anything about chemotherapy and radiation and uterine cancer, so I wasn't sure if those would be needed. What I did know is that I needed to have a hysterectomy. That was the cure. What I didn't know is that all of my expectations were about to be blown out the window. Dr. S. is, by far, the most fabulous doctor you will ever meet. He sailed into my room with a smile on his face and helpful concern in his voice, "Hello, Malinda. I'm Dr. S. How are you doing?" The shaking came back but I found strength enough to mumble something along the lines of I'm-okay-except-I'm-here-and-I-have-cancer-pleasehelpme. He sat right down next to me and the boyfriend. He put his hand on my knee, looked me in the eye, and started my cancer education. He explained some details about what we knew about my cancer. Which, in a nutshell, wasn't much. It was poorly differentiated but that didn't necessarily mean anything. We didn't know if it was contained or if it had spread, but from my history he was hopeful that it was contained. Then he asked the most surprising question: "Do you want to have children?" I distinctly remember saying, "Yes, up until 2 weeks ago I definitely wanted children." Then he surprised me even more...he started describing an alternative treatment that, if it worked, would allow me to have a child. It was a pill...a very large dose of some complicated medicine that had shown great effectiveness at removing uterine cancer in 45% of patients. He explained that, due to my extremely young age, he would be willing to try this medication in hopes that I could have a child. Basically, I would take the medicine for 3 months, have a PET scan and small surgery (the same one I had had to diagnose the cancer) to confirm no cancer, have immediate fertility treatments to get pregnant as fast as possible, and Dr. S. would deliver my baby and then immediately perform a hysterectomy to prevent future cancer. He explained that pregnancy would act as a natural block to the cancer. I don't have the words to adequately describe my feelings during this conversation. I was confused. I was excited. I was surprised. I was thrilled. I had hope. Just a small amount of hope...we still needed a PET scan to determine the stage of my cancer...but it was there.

The boyfriend and I left that appointment in a whirlwind. There was so much information. There were so many surprising emotions. And suddenly there was the idea of having a child together. And not on our timeline...on cancer's timeline, which meant in 3 months. As we frantically compared notes about the appointment ("Did you understand what he said about ____? Am I remembering it right? Did you understand it the same way? What about ____?" and on and on), we came to a few conclusions, 1) Dr. S. was awesome, 2) We were going to go for the alternate treatment if possible which meant 3) we were going to try to have a baby...this year.

Over the next week there were many things that had to happen. First, I had to have a PET scan. This is a truly awful, full body scan where you drink and are injected with radioactive materials and then lie in a scanner for 3 hours. All-in-all it takes about 4 hours to do. Oh, and you can't think. When I came back for my scan a few days after my first visit with Dr. S. I brought a book. You see you have to sit with these radioactive dyes for like an hour and a half, so I brought a book to entertain myself. As they were injecting me the nurse said, "You can't read that. You have to sit here quietly and not think. If you think, your brain will be too activated and all the dye will center there and you'll have a bad scan." You. Have. Got. To. Be. Kidding. Me. I think I strangle-yelled at her, "I'm 29 years old and I have CANCER! How do you expect me to sit here and not think!?!?" They took the book away. It was hell.

Second, I had to visit a fertility specialist with the boyfriend. We had to see if it was possible that I could get pregnant without the cancer. I had a long history of problems with all my girl plumbing...thus CANCER...so Dr. S. wanted to be sure that with the right fertility treatments we could get pregnant at warp speed. August 11th. It was wonderful to sit in a non-cancer doctor's office and talk about such mundane things as pregnancy and sperm count. The fertility specialist assured us that he could get us pregnant "within 6 weeks." Ahh, more hope. So, we happily flounced back to Huntsman and back to Dr. S. that same day to tell him the good news.

That 2nd oncology appointment felt chaotic. Dr. S. sailed into the room and immediately started rattling off the results of my PET scan: The cancer was contained to my uterus; it was Stage I (HOORAY!)...Did we see fertility guy? Yes, this morning. Good, so it looks like we can start the medication...Oh, and there was this one, little thing. The PET had identified a small unknown spot on my left kidney. Dr. S. had consulted with a urology oncologist (Dr. D.) who wanted to see me. Oh, and Dr. D. is on his way right now. Umm...I need a referral (!) to see a new doc. So, I jumped on my cell phone and called the student health center to beg for a referral so my insurance would cover Dr. D.'s impending visit. The boyfriend actually had to take over the call as Dr. D. came in and started my education on kidney tumors and kidney cancer. He explained that they could not tell if the tumor needed to be removed from the PET scan. I guess it wasn't the right type of scan. So, Dr. D. wanted me to have another scan...a CT scan...to see if this spot was a mass that needed to be removed. So, we scheduled a CT scan for early the next week and Dr. D. went on his merry way.

Dr. S. was all smiles and assured me that the kidney thing was "probably nothing" and that they were just being "aggressively cautious" and wrote out my prescription for what I hoped was a miracle drug. As I walked out of that first week of oncology appointments, I was giddy with hope. I had my medicine. It would take care of the cancer. We would have a child. Everything was going to be fine...different, wonderful, warp-speed-scary, but fine. I had just this one, very small nagging thought in the back of my head: What was that thing on my kidney?

And that, Little Bear, is the story of August 11th.

Til next time...Always and Ever After.

Saturday, August 3, 2013

Split Ends

Alone with my thoughts. That is my current status in life at this very moment. The house is peacefully quiet. Little Bear, you're napping and the husband is playing with tools outside at his storage. And here I am, quiet and content and alone with my thoughts. So here goes another blog post...

Two days ago I found a split end! A split end!! In MY hair!! Now, since you can't hear my tone when I say that let me just spell it out...I am THRILLED that I found a split end. It has been nearly 5 years since I had hair that was long enough to split! Split ends are so normal. Split ends are what happened to me before cancer. During and after cancer? No split ends. Not until August 1, 2013 anyway! So, here's to another "normal first" after cancer: my first split end. I've been checking and re-checking my hair the past couple of days and so far I've only found one...but I'm still looking. And, yes, I realize I need a trim. I'll do it soon, I swear.

When I was a kid I had this long, long, loooonnnnngggg hair. Hair I could pull in front of my face and examine whenever I was bored. If I found a split end (which was frequent), I could pull it apart. It was sort of a nervous habit. Plus I was morbidly fascinated with how a hair could split in half. 

Five years ago, I felt like I was split in half. Half of me was "the otherness" and the other was attempting to deal with my new reality. I had no idea what I was doing (thus the millions of phone calls and desperate attempts to focus on anything outside of myself), I had just turned 29 (with all the unhelpful thoughts about birthdays), and I was still waiting to see an oncologist for the very first time. After my birthday, we hit a lull. There were no more phone calls to make. There were no other celebrations to force myself to have. There was nothing to do. Nothing to do but sit with my thoughts. Not a great place to be 5 years ago. I struggled with the otherness; I struggled with reality. So, I just turned off. I entered..."the funk." 

"The funk" is a term coined by my dear husband. He noticed it and eventually pulled me out of it. Frankly, I had noticed it too. I just didn't care. You see, the funk was me not feeling anything. I was blank. I just sat where ever I happened to be located and looked off into space. I didn't see anything clearly. I didn't hear anything clearly. I didn't feel anything. I didn't care about anything. We would be sitting on the couch and the husband would ask what I wanted to watch on TV. "I don't care, anything," was my standard reply. We would be out running errands and he would ask, "Where do you want to go next? What do you want to do? Are you hungry? Where do you want to go eat?" "I don't care...I don't care...I don't care," were my replies. I had no interest in anything. I didn't care what I did, where I was, or who was with me. If I sat in silence and did not speak to another soul...that was fine. If I sat in front of the TV not watching whatever was on...that was fine. It was a chore to think. It was scary to think. So I just...didn't. It is hard to accurately describe exactly what I was feeling during this time. I felt completely numb. Like my mind was not connected to my body which was not connected to my emotions. Like I had no emotions. I did have some small thoughts that would flit in and out of my consciousness..."Malinda, you are depressed. Malinda, you can't stay like this. Malinda, what if you stay like this? Malinda, you have cancer." Cue more numbness. 

At first the funk was welcome. At least I wasn't hurting. At least I wasn't scared. This lasted for a few days, during which I pushed myself further and further down into the funk. It was like I was swimming though jello...just laboring to get to the bottom where I could be more detached. More insulated from everything and everyone. Where I could feel less. Where I could be safe from the otherness and the reality. But then the funk started taking over. I didn't have as much control over it. It got worse. I remember this one definitive moment, when I knew I would have to do something at some point about the funk. I was sitting in my living room. The TV was on but I wasn't there enough to know what was on or pay any attention to it. I was just sitting there. Not feeling anything. Staring off into the space behind whatever was on TV. And this thought pops into my head: "This is why people cut themselves. Just so they can feel something. Anything. Even pain." I turned my head to look into my kitchen. And then I felt scared. It all happened so fast. The fear was fleeting. But it had been there, and it wasn't fear of cancer. It was fear of the funk. It was fear that I would never feel again, never be able to connect myself to anyone or anything outside of myself again. Fear that I would slip so far away I would stop living while I still had life left. But then it was gone. I went back to the nothing. But I knew; I knew I could not stay this way forever...but, for now, just a little longer. 

Two nights later, I was still in the funk. My fear of it had come and gone and I still had no desire to do anything about it. That's when my husband stepped in. We were getting ready for bed and I was just laying there in the funk. He was trying to talk to me but I wasn't very responsive. I didn't look at him. I just stared off at the ceiling, waiting for lights out so I could go to sleep and be this all again tomorrow. That's when the husband started picking a fight with me. He started by trying to annoy me...I didn't respond. He started challenging me...I didn't respond. He kept at it...I didn't respond. Finally, he pushed the right button. I'm not even sure what he said, but anger...hot, colorful, boiling anger bubbled up from the deepest part of me and radiated out. I was incensed. I rolled over, looked him in the eye, and started verbally biting his head off. And then he did the strangest thing. He said, "There. That's better. I don't want to see you like you've been the last week." Oooh, I was mad. "You mean you did this on purpose?" I yelled. "Yes," he said simply. "I had to do something. You wouldn't respond to anything else I did." And then, in that moment, I had a choice. The funk was still pulling at me. I could choose to sink back into it. Or I could choose to feel. Feel the anger at being prodded into a fight (who does he think he is anyway?!?). Feel the pain and fear and confusion wrapped up in cancer. Feel the desire to fight...to fight like I've never done before. Feel the desire to kick cancer's ass. Feel the desire to live...not just physically...but to live, with or without cancer, until it was my time to go. Somehow, in that moment of pushing my buttons, my husband had given me the map to my future and it had only two roads: the funk or the fight. In that moment, I became a survivor. I chose the fight. The funk evaporated and held no pull for me anymore. "Fine," I said, "I'm here. I'll do it. But don't you ever say that to me again!" "Fine," he said, "I'm glad you're back. No matter what happens or what you think or feel, I can help you if you let me in. We can deal with it. We'll win. I can't help you if you give up. Don't give up, no matter what." Whew. Good thing I had some awesome company with this whole cancer thing. The love of my life saved my life that night.

And that is the story of how Daddy helped Mommy choose the survivorhood, Little Bear.

Til next time...Always and Ever After.