September 9th and Catching Up

Well, we've had a crazy couple of weeks including longer work hours, illness, and a long Labor Day weekend of travel. All this is just leading up to an excuse as to why I'm late on blog writing...I know, excuses, excuses.

Well, right now it is the last 15 minutes of September 9th, so I am just getting this in under the wire. Five years ago I was having my second major cancer surgery...a hysterectomy. Much more on that in the posts to come, but for now let me try to catch up...

Waking up from surgery is like waking up in the 7th circle of hell. You feel sick. You feel pain. So. much. pain. You can't move. You can't talk. In my case, you can't see. Your body does not feel like it belongs to you. Nothing works. Everything hurts. Your mouth is so dry you feel like you'll never speak again. All in all...it sucks. Unfortunately, your brain is one of the first things that starts working. On August 20th my brain woke up to a whole lot of rib anxiety (along with a little cancer anxiety). Did I still have my rib? Was the pain in my side indicative that they had hacksawed my poor, precious rib off for no good reason? Where was a human who I could beg for water and answers??

I don't know how long I laid there in what they call "recovery." It felt like forever. I remember a nurse coming to my bedside and telling me about a button I could push for pain. I remember concentrating on my fingers to be able to move them so I could push the button. The pain was overwhelming. Once I found the button I felt like it didn't work. I tried calling out for help. I couldn't speak. I was trapped. Thankfully, I started drifting in and out of consciousness. I preferred sleep to my brain ruminating on my rib and on my cancer while my body screamed in pain, so I let myself drift off into nothing.

I woke up later to a good friend looking down on me with concern. He told me that I was out of recovery but that I was in a temporary room and would be moved to my more permanent location shortly. He went into the hall to round up other friends and attempt to find the boyfriend. Eventually, everyone trooped in and asked me how I was and told me I looked great (liars) and told me that the doctor said the surgery went fantastic. No one knew anything about my rib. The boyfriend came in and smiled and held my hand and said the doctor was pleased with how things went. I drifted back off to sleep.

After I was moved to my more permanent location, it felt like I would never sleep again. There was a never ending stream of nurses and aids and social workers and monitor readers/blood takers that came in at all hours of the day and night. I mean, 2am blood draws and 4am blood pressure checks. There was a lot of beeping. I remember frantically asking about my uterine cancer medication. Was it on my med list? When could I take it? I needed to take it; I was going to have a baby! They finally obliged me (after much paperwork and inter-office communication) and I was able to resume taking it daily. I was pleased that I had not been bleeding in the hours after my surgery. I figured that this meant the medication was working.

One of the greatest blessings in my life is the absolutely wonderful support system I have, filled with the most fantastic people. I was not alone in that hospital bed...I had a steady stream of friends and loved ones who came to visit me. The nurses even commented on how many different people came to visit and spend time hanging out with the potentially ribless girl. At any given point during the day, I had a group of people hanging out on the chairs and sofa in my room, laughing and talking and just generally cheering me up. That was why it was so odd that I was completely alone when Dr. D. came to speak to me.

It was the first full day after my surgery. I was in pain, but I was starting to move around a bit. Walking was on the agenda. I had learned that I had a drain in my wound that kept excess fluids and blood at bay. It was a pain in the side. I felt like I was finally getting re-hydrated and my brain was nearly fully functional. I had a few very close friends visiting me and the boyfriend that day, and the boyfriend had just taken them to the restaurant to get some food. I was all alone for the first time since I entered the hospital. Then Dr. D. walked in.

I remember trying to sit up and smiling at him as he walked in the room. He wasn't alone, he had a woman in a lab coat tailing him. He didn't introduce me to her right away. He looked around the room and said, "I wasn't expecting to find you alone. I've heard you've had quite the visitors lately." I agreed and explained that the latest set of well-wishers were getting food. He asked if I wanted to wait til they were there. I said no. I can't fully explain this little interaction because there was so much that was unsaid. Dr. D.'s face said it all. He didn't smile. He didn't make full eye contact. When he did he looked at me like I had one foot in the grave. I looked at him and I knew. I had lost my battle with cancer. I didn't know how or when or how, but one look at his face told me it was done. Then Dr. D. confirmed my fears. He spoke quietly and slowly. He tried to be gentle. He told me that the surgery went beautifully. My kidney was 95% intact and I would have no long-term kidney effects after the surgery. Then he told me that there were more tumors on my kidney than had originally shown up in the scan. He said that on the scan they found one but he removed 5. Some were super small, but he "took everything [he] could visually locate." Then he looked me dead in the eye and said, "Whatever I took off of your kidney yesterday was not kidney-related. It was not kidney cancer or a benign tumor. I don't know what it was, but it was not kidney cancer. The only explanation is that your uterine cancer has metastasized." Metastasized. Hearing that word was like getting shot. I could feel the freak out making its way out from my insides. Metastasized cancer. Game over. I didn't say anything. I stopped breathing and listened. Dr. D. went on to explain that metastasized uterine cancer was bad. They don't know how to treat it. It doesn't usually manifest itself in this way. He had never heard of a uterine cancer metastasizing to the kidneys but he researched it and found a single case, so it does happen. I looked him in the eye and said "that one case, it didn't end well did it?" Dr. D. looked so sad...I almost felt sorry for him...and he said, "No, it didn't." I asked him if it could be anything else. He said, "I cannot see how it is anything else. It is extremely unlikely, and I have never seen it, that you at your age would have 2 primary cancer diagnoses that are unrelated to each other." He then went on to explain that there was no treatment for metastasized uterine cancer but that I could sign up for a clinical trial to try and extend my life. That is when he introduced me to the doctor standing next to him. I have no idea what her name is...in my defense, my brain had stopped processing new information. Dr. D. told me to listen to her and sign up for the trial. He told me to start walking and that he would keep checking on me. He explained that he looked all around the kidney for more cancer (thus making a longer cut on my body, about 12 inches) but that he couldn't find any. He said he took all the cancer he could see. Then he sort of shook his head and made some awkward small talk and then he was gone.

I felt muffled. Muted. The otherness was strong. I looked at Dr. Nameless and she started clinically stating a bunch of horrible facts. I was considered terminal. I had a 20% chance of living for 5 years. There was no cure. There was no treatment to extend life. She handed me an informed consent document that was at least 50 pages long. It was like a book. She went over it with me in a clipped, clinical fashion. She explained that this was chemotherapy and that it was completely experimental. It would not cure my metastasized uterine cancer but it may extend my life. It was so new they could not predict how much of an extension I would get. On and on. No smiles, no warmth, just business. As Dr. Nameless and her horrible clinical facts crashed down on me I could feel the otherness and the freak out and the funk all vying for control. As my mind separated, I could see the path to me losing it and I made a decision. Not today. I was dying, fine. But not today. Today I was going to live to see tomorrow. And I had no idea what tomorrow would bring. Probably nothing good...I mean come on, let's face it, my track record was truly sucking...but still, I didn't know. So, as Dr. Nameless rambled on (think Charlie Brown's teacher at this point), I decided that I was not going to freak out until I had the official results of the biopsy of whatever in the hell Dr. D. removed from my kidney. He had acknowledged that, to be sure, we needed the biopsy. So, I was just going to stubbornly wait for it. I didn't know how, but I had this small sense of hope that this could still work out. I could still live beyond cancer. In that moment, the otherness and the freak out and the funk all dissipated. They were there, just below the surface, but I was in control.

I also decided not to tell anyone. So, after Dr. Nameless left without a smile, I hid my informed consent tome and got back into bed and concentrated on remembering to breathe. My friends and the boyfriend came in a few minutes after Dr. Nameless left and I knew my secret was safe. They hadn't seen her. They hadn't seen Dr. D. They had no idea I had just been given terminal news.

I'd even forgotten to ask about my rib.

And that, Little Bear, is the story of when I woke up.

Til next time...Always and Every After.

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.

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.

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.

It's My Birthday!

Today is my birthday! Well, July 29th is my birthday...this is getting submitted after midnight so it isn't technically my birthday anymore, but you get the general idea. I am officially 34! I had a wonderful day, spent with my Little Bear and the husband. I had no shortage of smiles and laughs today...which means I had a great day!

Little Bear, you made my day super special. This morning, when I went into your room to get you up, you greeted me with a huge smile. You said, "Happy Birthday, Mommy" because we told you it was going to be my day when you woke up. And you showed me your new trick...twirling your hair around your finger! You said, "Watch this, Mommy, I have a surprise for you." Then you wrapped a piece of your hair around and around your pointer finger...then you said "Da da ta!" In Bear Speak that means, "Ta-da!" Then you did it again with equal fanfare. It was the best birthday gift. I was so lucky to spend the whole day with you and then Daddy came home and made a delicious dinner and then we all went out to the Cheesecake Factory for some yummy dessert. Today, life was so, so good.

Of course, today I've also been thinking about my day five years ago. Life was definitely not very good for me then. It is not too dramatic for me to say: it was the worst birthday I had ever had. I was also scared it might be my last one. For the entire day, I was assaulted with unwanted, terrified thoughts such as "Is this my last birthday? Will I live to see 30? Will I live to see 35? When will cancer get me?" I was also in pain, physical pain. The further I got from my surgery, the worse the pain got. It was like I could feel the cancer eating me from the inside out. Sometimes the pain was so bad that I was on the floor, in tears, clutching my middle trying to keep myself together. This led to more unwanted and unhelpful thoughts. I felt like I had an alien inside of me; my body was not my own, it was foreign. I was scared of it. The otherness was overwhelming. I wanted nothing more than to rip the cancer out as fast as possible. Unfortunately, I was playing the waiting game.

I remember thinking it was so ironic that this, my 29th birthday would be my worst. For the months leading up to this day, my best friend and I had joked that this was my "magic birthday." I would be 29 on the 29th. That only ever happened once in a person's life. We had joked that we should have a big party to celebrate this magical milestone. I had looked forward to the day, thinking that 29 would be better than 28. I only had good things to look forward to. As you know, that all changed on the 22nd, one week earlier. Now I struggled to imagine my future. I was filled with fear when I even thought of my future. I also started torturing myself with the "what ifs." What if I died before I turned 30? What did I have to show for myself? What had I done in my life that brought me true happiness and joy? I started going over my life goals and wondering why I postponed them to go to school. School felt so trivial. I was suddenly embarrassed that I had put so much time and so much effort into something that I, now, would probably not complete and had, in the process, denied myself a life that brought me true happiness. I would never have children. This was a fact, regardless of whether I survived or not. I had missed my opportunity to be a mother. How could I ever possibly adopt? Who would give a child to a person with a history of cancer? How could I possibly afford it? It just seemed impossible (like everything else under the specter of cancer).

As you can probably tell, I was spiraling. I was spiraling down towards the dark. I honestly cannot remember anything about my 29th birthday other than all the negatives I was feeling and thinking. I don't know what we did. I don't know who I talked to. I don't know what gifts I received. I just remember that that was the start of "the funk." The majority of the phone calls were done. The plans had been set in motion to handle my work, social, and personal responsibilities. There was nothing left to do but wait. Wait and feel the world crushing down on me. My birthday was just another painful reminder. I wanted to hide, I wanted to numb the fear and the pain. So, I slipped into "the funk" where everything was so heavy and so hopeless that I just felt: nothing.

So, here I will end with how I feel today: a total sense of wonderment. Wonderment that in 5 short years, my life could be so incredibly different. Not only have I been granted that which I coveted on my 29th birthday, time, but I have my Little Bear. I have the family I thought I had lost to cancer. And you know the truly amazing part? In a way, cancer gave me the family I thought it took. I just had to make it through the funk and the fight and kick cancer's butt to get it. Onward and upward.

And that is the story of my 29th birthday, Little Bear.

Til next time...Always and Ever After.

Prolonged Nightmare...The Immediate Aftermath.

So tonight, I am just a couple of days from my birthday. This is always a time of reflection for me. After all, my cancer diagnosis and my birthday were so close in proximity...they are forever connected. Today I am thankful; thankful to be getting older and living to see my daughter grow. Birthdays, by definition, are wonderful things. Unfortunately, a lot of people complain/freak out about getting older and let that tarnish their special day. I suppose I used to be one of them. Not anymore. I'm glad I'm getting older. There was a time, not too long ago, when I didn't think I had many birthdays left. So, onward and upward! 

When I was a kid, my siblings and I would try and freak out our mother by calculating and announcing our future ages. "In 10 years we'll be 20, 17, and 15 years old!" "In 20 years we'll be 30, 27, and 25 years old! And you'll be 60!" I'm not sure why we played that game...other than to see Mom quiver with fake fear of these seemingly impossible old ages (I mean those ages were SO. FAR. AWAY.)...but I vividly remember calculating our future ages. We never went higher than me being 30 though (I'm the oldest). I don't know if it was just that we couldn't imagine me being older than 30 or whether my siblings never wanted to imagine themselves in their 30s in our little game. Years later, as I rounded 25, I had the thought that I should start freaking out about 30. I was getting so close! And according to the age old adage and many staunch believers, 30 is when everything starts to go downhill. Wrinkles. Gray hair. No Metabolism. Loss of muscle, strength, eyesight, hair, memory, beauty, etc. After 30 you officially start wishing for your 20 year old body. So, I smiled and went along with the jabs about "pushing 30" in the years leading up to my big day. 30 didn't sound fun.

When I turned 28, I genuinely started to feel freaked out about my age. I mean, how many childbearing years would I have left? Even though I had the boyfriend (and we'd been together since the stone age, AKA the 90s), I felt so far from being in a place to start a family. I had work and school and the career to start. Kids would come later; I had always planned that kids would be in the picture, but down the road, in the future, later in the plan...but now I was almost 30. How long could I wait? The shocker to me was: I had already waited way too long.

One week prior to my birthday, I received the diagnosis. I was officially a cancer patient. The one with cancer in my social circles. The sick one. The problem was, I had no clue how to be a cancer patient. I know that sounds dumb. But in that week between "you have cancer" and my birthday, that was what I struggled with the most. Every night I went to bed hoping, praying, begging that this was a nightmare. It couldn't be real. It didn't feel real. It felt wrong. This could not be happening to me. Who got uterine cancer at age 28!?!?!? No, no, no. And my birthday itself loomed over me like some kind of sick joke. Would I live to see 30? Most definitely not a helpful question, but one that I tormented myself with repeatedly for far too long. So, I struggled. I struggled to accept that I was, in fact, a cancer patient and that everything now had to change.

After I came home from the doctor, after I could breathe with some regularity, after my boyfriend and I said "I love you" and "we'll get through this" (a lot), we sat on the couch. We sat so close to each other. I remember that most. Like we were trying to get every ounce of air out of the way; pressing into each other to remind us that we were both still there. I drew strength from that, from his warmth, from his physical presence that was not infected with cancer. We held hands. I could finally start talking and tell him exactly what happened, what was said, what we had to do next. He asked questions, he rubbed my back, he repeated our new mantra, "You will beat this. We will beat this. Everything will be okay." Oh how I wanted to believe him. I held on to that conviction with all my might. Even in my darkest moments, from that day forward, I would try to conjure up his voice saying "we will beat this" to give myself hope. I wasn't always successful.

During that first cancer conversation we discussed the logistics of having cancer, we made plans, and we talked about how to inform our loved ones. There were so many people to tell. Our respective families, our friends, our work colleagues. Who to tell when? How? How do you tell the people you love most in the world that you have cancer? (Spoiler Alert: It involves a lot of crying.) We planned out how we would both handle work. I needed to inform my grad program as soon as I could, I needed to set up referrals and transfers for my clients, and I needed to talk with supervisors about how to tell my clients. I needed to figure out the upcoming fall semester...would I take classes, would I take a leave of absence? What were my options? What did we want to do with the prospective options. We talked about what he would tell his work. There were appointments coming up. And not just any appointments, ONCOLOGIST appointments. This was a whole other level of reality. There was just a lot of planning on the couch that day. And a lot of planning in the days ahead.

The next few days were filled with too many tears to count and too many "I have cancer" proclamations. The same day as my diagnosis, I called and told my immediate family. Pain. Just pain. I remember telling my parents, "I'm sorry I'll never have your grandchildren." I also said that to my boyfriend. We were standing in the kitchen and I said, "I'm only ever going to say this once, but I want you to know...I'm sorry that I will never carry your children." It felt important for me to say that. It felt important for me to acknowledge, out loud, that I would never have biological children. It was my first step on the road to processing and accepting one of my new-found labels. During the conversation with my parents, I remember my mom crying more and my dad saying, "Any children you have, no matter how they come to your life, will be our grandchildren. You don't have to apologize for that, Sweetie." More tears. The boyfriend was equally supportive. For this day, at this time, there was no lack of love in my life.

In my non-quest to figure out how to be a cancer patient (I mean, who wants to figure that out?), I decided that 1) the more I said "I have cancer" out loud, to witnesses, the more quickly I would accept my new reality and 2) I needed to tell everyone I could think of personally so I could practice #1. Plus, I wanted to be doing something. I wanted to be doing something, anything, to get rid of the cancer, but, unfortunately, there was a bit of a wait on that. I couldn't get in to see the oncologist for about 14 days (seriously, didn't they know I had CANCER?!?!? How dare oncologists go out of town, EVER!). So there I was, just waiting with cancer inside of me doing heaven-knows-what with my innards. Better not to think of that. Much better to be calling people and practicing my "I have cancer" line. I freely admit that I lost my mind during that time. I was frantic. I held on to the planning and informing like a lifeline and used the conversations as a distraction from feeling frantic, hopeless, and terrified. One of the nice side effects of telling people you have cancer is, they keep calling you to make sure you're okay. Ah, more distraction, more chances to ignore the ugly stuff going on inside and focus on the external-I'm-doing-something-to-beat-cancer thing. I felt stronger. I felt more centered. I felt more sane. Unfortunately, those feelings wouldn't last. 

And that is the story of how I first started to lose my mind over cancer, Little Bear.

Til next time...Always and Ever After.

Okay, let's try this whole "blogging" thing.

Where to begin, where to begin... I've rewritten the first couple of lines of this first post a few times. They were all terrible. So, I'm just going to start. Hi, my name is Malinda in case you don't know me. Writing down my story, my thoughts, my whatever has been weighing on my mind for some time. Over the last couple of years I have had many nights where I go to sleep thinking of things I want to write and how I want to write them. But frankly, I've been too scared to put them down on digital paper and put them out there. So, with fear in my heart, here I go.

I mostly wanted to write things out for my daughter. I want her to know my story which is part of our family story which is ultimately her story. I want her to know what led us to her on a warm January day in Arizona. And I want to write this out sooner rather than later as I am scared that as time goes on I'll forget. I love you, Little Bear...here's our story:

I'll start with cancer. Cancer. The Big C. F-ing Cancer. It has many clever monikers and has been written about, talked about, cried about, and screamed about in too many people's lives. People have lived their whole lives in fear of it. It's the first thing the news or the media in general jump to when they want to shock people. THE SUN CAUSES CANCER. EATING CAUSES CANCER. BREATHING CAUSES CANCER. LIVING CAUSES CANCER. The funny thing is, I had not one but two types of cancer and all of my fabulously, brilliant and wonderful doctors have no f-ing clue why. Fun, right? So, now that I'm "cancer free," I have no idea what to avoid to prevent more cancer in my future other than the age old don't smoke, wear sunscreen, don't-breathe-quite-so-much-in-case-there-is-a-toxin-in-the-air recommendations. Fortunately for me, my doctors did know how to kick the crap out of cancer and get it the hell out of my body. So, my glass is definitely half full and I am eternally grateful and forever in debt to several teams of wonderful people.

Five years and a week ago, my life was very different. I was feeling quite sick (more on that later, I don't want this to be the longest blog post ever) but was generally happy. It was summer break from graduate school. I was collecting data and working on my Master's thesis, I had had a short but wonderful vacay in Las Vegas a month before with very dear friends, and I was gearing up for a minor surgery that was supposed to cure my ailment. I knew my doctor well, she had performed this surgery on me before and I had minimal worries about it as both she and I were convinced this would solve my current health problems. After all, it had done just that a few years before. So, I prepped for surgery, signed all the paperwork in case I died on the table and wanted to sue, and looked forward to feeling better. I walked into the hospital on July 18th worrying more about how they were going to get a needle in my arm than the actual procedure. I had done this before.

When I woke up from the surgery I remember feeling really odd. It just felt wrong. This was different than the first one. I was in more pain...a lot more pain. I felt sicker. I shrugged it off. This is normal, right? Surgery and anesthesia make you feel bad. Pain is normal. Maybe she was more aggressive with the scalpel this time. Nothing to worry about. It was done and I was going home to start feeling better. The only problem was that I did not start to feel better.

I had been running a low-grade fever (think 99.0 to 100.5) for months. Every time I went to the doctor, my temp read high. Not super high, but not normal. My doctor wasn't sure what it was but she also wasn't concerned about it. I didn't feel feverish...sure I was hot a lot (but that was normal for me and it was summer so, duh) but I didn't have any other fever symptoms. There was also no reason that she could find that would be causing a low-grade fever, so we ignored it. But, after surgery one of the first instructions you are given is that if your temperature goes over a certain number (in my case 100), you have to go back to the doctor or hospital. My surgery was on a Friday, so on Sunday when my temp spiked to 101, I was back in the hospital trying to figure out what the hell. I spent 8 very uncomfortable hours getting poked and prodded and examined repeatedly with no clear diagnosis. The ER docs could not figure out what was causing my temp. So, I was sent home with antibiotics just in case and told to rest.

Monday rolls around and I get a phone call. It's my doctor's office nurse telling me that I have to come in for an appointment. And they've already scheduled me one for tomorrow: Tuesday, July 22nd. "This is weird," I thought. Isn't it the other way around usually...the patient calls the doctor to demand an appointment? But...I was just in the hospital with that weird, unexplained fever. Phew, she's just following up on that to make sure I'm okay after surgery. So, I blindly, blissfully, stupidly agreed to the appointment time that only I could attend as my boyfriend (now husband) would be at work. I think I mentioned to him that I had to go back to the doctor, but it really wasn't an important conversation on the 21st of July.

On the 22nd of July the importance of nearly all conversations in my life changed drastically. It was a bright, sunny day. I remember being a touch nervous as I drove to the doctor's...I mean WHY had they insisted on this appointment. No, no, nothing is wrong, Malinda...carry on. I walked into the waiting room and there was no one there. Not a single patient. While this felt weird, I was happy I did not have to wait long. The nurse came right out for me and she stood by my chair as I gathered my purse and put down the magazine I had no chance to read while waiting. Again, weird. She checked my vitals...again with the low-grade fever!...and sat me in a room to wait for the doc. I think I maybe had like 5-10 mins by myself. I checked my phone. I swung my legs. I looked out the window. Then my doctor came in. I brightly said, "Hi, how are you?" She gave me the oddest look...I can't even describe it. She didn't meet my eye and just said "I'm just okay" in a sort of sighing, quiet way. Then she sat down and my life exploded. She turned to me and said, "the results of your pathology came back. I'm sorry to tell you but you have cancer." I know it is cliche, but it is truth: Time Stopped. I stopped breathing. I stopped thinking. I stopped moving. I stopped hearing. I stopped seeing. For about 1 second, nothing happened and I was separate from the world. That was when the "otherness" was born. During that 1 second my life's timeline lurched onto this strange, other road. A road I had no idea how to handle. I didn't even know where it was, where I was, or where anything was. Nothing made sense. After that 1 second there was two of me...the one with cancer and the one who continually screamed in the back of my head "THIS IS NOT HAPPENING TO ME. THIS IS NOT MY REALITY. I DON'T HAVE CANCER." She didn't shut up for a few weeks...and made very uncomfortable appearances repeatedly over the next year or so. More on that later.

After that 1 second, everything started and time sped up. I started shaking. I started crying. I gripped my chair so I wouldn't fall off and my legs were swinging and my feet were tapping like mad. My vision returned but it was tunneled onto my doctor's face. She had to be wrong. My brain started thinking again but not very well. I remember wondering what the hell pathology she was talking about...it took a minute for me to figure out that, of course (!), they would have biopsied the tissue from my surgery. Breathing was hard. Remembering to breathe was hard. I consciously had to remind myself to take breaths. Then I would forget again. I was crying, but not sobbing. I didn't want to pass out from the fear and I was worried that if I went into convulsive sobs and desperate crying I would pass out. That would be so embarrassing. I was twitching. Ugh, I just could not stop twitching. I could not stop the tears. They just poured of their own free will. People have often asked me what it was like to hear those words for the first time. The best I can answer is that it was a total body experience for me. I was hyper-aware of every cell, every hair, every brain synapse for about 10 minutes. Up to that point, it was the single, worst moment of my life.

I don't know if my doctor said anything during my first freak out. I could see her face, but I was having trouble focusing on anything she said. Everything was confusing. There were too many questions in my head that I couldn't sort out to figure out which ones I should ask and when I should ask them. And how the hell was I supposed to remember her answers! I think she said some stuff and then asked me if I had any questions. I asked her what kind of cancer it was. She said "it is uterine cancer, but I can't tell you much more, I'm not an oncologist." Oh God. I have to have an oncologist...AN ONCOLOGIST. More freaking out. I asked her how bad it was. She got this really sad look on her face and said, "I don't know but the pathology came back as poorly differentiated. That means it is aggressive. I'm not an oncologist so I can't tell you more, but I've never seen anything like it. This is not about you having children anymore. This is about saving your life." Okay...more and more and more freaking out. Ugh, even as I type this I'm sweating. "Poorly Differentiated." That haunted my dreams for months. And the whole "This is not about you having children anymore. This is about saving your life." She said that I few times. Those exact words. They haunted me too.

I'd like to tell you all how brave I was in the face of cancer and how I handled my mortality with dignity and intelligence. Truth is, I was a blubbering idiot. I wasn't sobbing, but that meant I could talk which meant I sounded really dumb. I think I even asked her, "What about school?" To which she replied, "I don't know." I hate that question...it was so stupid of me. I really needed to get myself together. My doctor knew this, so she eventually told me to take as much time as I needed and to call whoever I needed to call. She asked me if I had someone who could pick me up. I said no. She told me she had a referral to the best gynecologic oncologist at Huntsman Cancer Hospital that she wanted to give me. She had actually already called his office and, when I felt up to it, I needed to let her do some tests on me (a blood draw and EKG) so he could get me started on treatment as early as possible. Don't worry, she had worked with him before and he did the best hysterectomies in town. Again, my lack of intelligence reared it's ugly head and asked, "You mean you won't do my surgery?" She gracefully explained that cancer hysterectomies were much more complicated and that she was not qualified to perform them. Cue yet more freaking out.

After she left I called my boyfriend. I tearfully cried into the phone that I had cancer. To this day he says he did not freak out, but what I remember is him yelling into the phone, "You do NOT have cancer. She is just wrong. We'll go get 2nd and 3rd and 4th opinions if we have to. You do not have cancer!" If I ask him about this now he says, "Well, I didn't want you to have cancer." That makes sense. I don't know why, but me trying to explain to him that pathology doesn't lie and it does in fact appear that I have cancer and we shouldn't waste time on 2nd opinions calmed me down. I stopped crying for a bit and was able to go through the tests without blubbering. Although the nurses followed me around with a box of tissues that I got to keep. Score.

After my tests, the doc gave me my EKG results so I could bring them with me to my oncologist appointment...just in case the results weren't entered into the computer in time. As I prepped to leave, I had to ask one more stupid question. As I said, I was hyper aware of every cell in my body and as a result I was hyper aware I had this low-grade fever. I could feel the heat. And I knew I had had it for months. It was unexplained. And I wanted to know exactly how long I had had cancer as the longer you have it without treatment the worse it is, so I asked "Does cancer cause fevers?" All she said was, "I'm sorry. I just don't know. Maybe." Oh God. How long had I had those fevers?? Months and months! At least since February. It was July. Had I had cancer running unchecked in my body for that long?

As I walked out of the doctor's office, I started freaking out again. The tears flowed. I remember wondering if the doctor thought she would ever see me again. Would she check up on me via my medical chart? Would she ever think of me again and wonder if I was alive or dead? Would I be alive or dead?? Ugh. By the time I got to my car I could barely breathe and couldn't really remember how to drive. So, I called one of my best friends. And I walked circles around the car crying and screeching "I HAVE CANCER." It was compulsive. It felt insane. This could not be real. The otherness was uncomfortable.

I don't know how long I talked to her, but I eventually was able to get into the car. I remember her telling me to go home. She stayed on the phone with me the entire way home. She used a calming voice. She didn't cry or scream or freak out. She went into her clinical mode and kept calm and kept telling me what to do. I honestly do not remember much of my drive home...I have no idea how I did it. I just remember her voice was a lifeline that I needed to not die in a car accident before cancer got a chance to kill me. So thanks for that, Jubbins. You probably saved my life that day.

When I got home, the boyfriend was waiting for me by the front door. I walked in and we crashed into each other in a massive hug and I finally sobbed. I mean, bone wracking sobs. He was the perfect support...no tears, just calm reassurances and a lot of, "I love you." After a few minutes, I was able to sit on the couch with him and tell him what I knew so far. That was the easy part. The next part was harder.

And that is the story of when I found out I had cancer, Little Bear.

Til next time...Always and Ever After.