Since I've been admitted to Karmanos, I've been asked by nurses, doctors, family, friends, through Facebook, emails, text messages and more, "How are you feeling?" I've never been so perplexed as to how to respond to that question, ever, in my life. I could respond with the typical, "ok" or "pretty good, " but that would be a lie. There are actually many ways in which I could respond depending on a number of variables. It might vary due to the person asking, how I was feeling previously, or what I hope to be feeling in a few minutes or even more so, what the person HOPES to hear from me. Some can't handle bad news, and that's the truth. People definitely have a hard time when I try and be honest with how I feel and tell them the crude reality of my life right now. After listing all of the fevers, chills, nausea, stomach pains, headache, extreme fatigue, emotional distress from missing my son, and so on and so on and so on.... I don't blame people for not knowing how to feel after that kind of response. It's a lot to take in. Believe me, it's a lot to live in. This is my reality.
This post transplant time is a roller coaster of side effects. As we all patiently wait for my donor's stem cells to begin producing the life saving cells it should be producing inside, my body is left in a very critical state. The chemo has destroyed all of my immune system and my body is left with a white blood cell count of 0.1 and my platelets at 4 (should be 150-400) and my red cells critically low too. I am a walking disaster. I rinse with saline solution to prevent mucositis, sores in my mouth, throat and stomach, and try to down as much broth as possible since most foods make me sick to my stomach and nauseous. Between the fevers and chills, sweats and headaches, sleeping has become my enemy. This all goes back to the point I made a while back; cancer has robbed me of simple comforts in life.
The good news is that I have faith and hope. I also know and believe that the past 33 years (almost 34) have prepared me for this extremely trying time. When all of my comforts in life have been ripped from me temporarily, in addition to the fact that I am physically weak and broken, I can still figure out a way to keep my head above water. I might fall to my knees a few times here or there (today I almost did), but then I stand. I call this my stay-cation, but who am I kidding. It's far from any kind of vacation, however, like a stay-cation, its focus is to rejuvenate me and that's what I am doing. I am focused on getting cured. I am determined to build character and strength, in the meantime, that will not only get me through this transition to good health, but also carry me throughout the rest of my life. NOTHING will break me after this. I will have no fears, no real worries after I've spent 10 years fearing death and worrying about how I was going to be able to live through the next year, next month; you get the picture.
The rebirth of me continues. How am I feeling? DETERMINED.
The first day of my stay-cation at Karmanos, I was introduced to Steve, not in person, but indirectly during my tour of the unit. Here on the BMT Unit, there is a very important dry erase board that hangs at the end of the hallway. Each patient is to write their name down every day and keep tabs on how many laps they walk around the floor. I met Steve indirectly when I was shown the dry erase board. Steve was clearly an over achiever based on the countless sets of laps he had walked that day. His tallied marks on the dry erase board told me that I met my match. Yes, I am here for a cure, but I am still Tara and I love a good challenge.
Turns out, Steve was my neighbor. His room was right next to mine and my challenger was a very nice man. He is from Inkster and had been at Karmanos a month and previously at another hospital. He's had quite the journey; we all have had quite the journey in some way, shape or form. He shared with me his story, a little about his family and life and pretty soon we were walking the halls, both stopping to check off yet another lap completed, together.
I've come to realize that this really is not just MY journey. It is very much a journey that encompasses so many people. I am very blessed to have such a huge network of friends, young and old, school and work. I am saved by my family, who stands by my side, day after day, fighting this fight as if it were their own. And now I have this great network of people at Karmanos. Everyone from my doctor, staff, nurses, food service ladies and of course Dee, the lady who makes sure that my room is germ free and so fresh and so clean. They're all are a part of my life now and my life is so much richer because of them.
Well let me tell you, those new stem cells sure made it known that they were roaming about in my body last night. Between the fever, chills, shakes, headache, nausea and sleeplessness, I was beginning to think that that were declaring World War III inside of my body. I made it through the first night with my new stem cells and woke up happy to not be shaking anymore.
Goal #1: Take a shower. Again, this shower goal begins to become more and more of a challenge as the days pass. Nonetheless, it is a goal and goals are important here on the 10th floor of the BMT Unit. The thought of taking my clothes off after an entire night of fever, chills and shakes, made me cringe. But I did it. Mission accomplished. I have to remind myself that I am a fighter, even when it comes down to the simple task of showering in the morning.
My family support has been nothing but 110%. Everyday, my family shows up, supporting me, even if they just watch me sleep and feel sick; they are there. Today I was also blessed with Barb and Pat, friends of mine from St. Blase, who brought me communion. Faith is my ticket out of here; faith is my ticket in life. Without faith, I would be entirely lost and in this fight, I would be completely lost.
With all of the 2nd birthday hoopla, I want to take a moment to express my appreciation to WDIV, Channel 4 Detroit. Devin Scillian, Ruth Spencer, Sarah Mayberry and the entire crew resurrected my news story from 10 years ago when I was first diagnosed with cancer and looking for a bone marrow donor. They initially covered my story back in 2003 and at the time, I was not able to find a donor and the chances of survival were dismal without one. I ran into Devin at an event before I was admitted to Karmanos and mentioned to him that I had found a donor and how great it would be to use my story to educate others to help save lives by getting more people on the bone marrow registry. The process is so simple; a swab of the cheek and the actual donation process is now like giving blood. That simple and you now have helped save a life like mine. Not only did they cover the updated story, but the camera crew came to Karmanos, WDIV pulled old footage from 10 years ago and created a wonderful story, covering the entire 10 years of this cancer journey which aired on the evening news. It was more than I could ever ask for. The story was beautiful. It captured my son from when he was as a little kid to now as a senior in high school. They did a fantastic job at educating viewers on how easy it is to become a donor and that it doesn't require drilling into your hip anymore to donate and save a life. It was amazing. Thank you WDIV.
So the night has come to a close, with a last minute visit from RJ King, who brought by Detroit goodies that only he could deliver, as well as my sleepover partner, Megan. Not only does she understand what I need when I don't say anything at all, she is committed to me through a friendship that I don't ever want to live a day without. She accepts me for what I am; broken, sick, cancer, and soon to be cancer-free. I love her.
Today, Saturday, July 20, 2013 at 10:25 am I was born again. I received my unrelated bone marrow transplant and my second chance at life.
Now, one would think that it would entail some kind of surgery or lengthy procedure, but it was quite the opposite. The actual transplant was pretty, well, simple. The cells arrived in an igloo cooler and were placed on the bed table in front of me. I stared at the cooler thinking, this looks like a beer cooler, not a life saving stem cell cooler. I had my family, all wearing our Team Tara "Losing is NOT an Option" shirts, as well as Lynn, and my two aunts. Dr. Lum came in with the nurses and read off the labels making sure these were, in fact, my stem cells. Then he took the small pouch of stem cells and hung them from my IV pole. The machine began to push the stem cells down the clear tube into my heart and the rest was history. My rebirth took all of about 20 minutes.
I never thought that it would feel like something changing or happening inside my body, or for the procedure to be more that what it was, but it was one of the most important days of my life. I have waited and dreamed of this day for over a decade. And still the journey is just beginning. Now I must wait for the stem cells to magically find their way to my bone marrow and begin my new blood cell factory. I will then be able to produce healthy cells, FINALLY. I can't even begin to imagine what having healthy cells is like; cells that will correctly do their job and allow me to live cancer-free. It seems so far fetched after 10 years living my life in and out of the hospital. It's as if the hospital and cancer has just become a part of my life. I am excited to kick them out!
This has been a fight, especially as of the past few days post chemo. I have never felt such fatigue, nausea, pain, and more. It has truly been a test of my inner strength. Yesterday, when it took me until almost 3pm to make it out of bed, determined to shower by myself, I was reminded how tough this whole process is. It would be easy to just lie in bed and give up. I didn't want to do that to myself; I have come to far to let this take just one day from me and the goals that I have set for myself.
So the next path of this journey is beginning, growth of new, healthy cells and the battle of GVHD. I will not lose. Losing is NOT an option, why? Because I love living life, not just existing in it and that will make all the difference between victory and defeat.
Well, I now realize why my nurses wrote on my dry erase board "take a shower" as one of my goals since I started my stay-cation. I laughed at first, since the thought of taking a shower seemed like less of a goal and more like a necessity, a routine task of sorts. This morning, I woke up to the world's worst nausea from the intense chemotherapy I have been getting. The slightest turn or movement of my head and body magnified the sickening feeling and all of a sudden getting out of bed and taking a shower seemed virtually impossible.
My illness didn't stop my visitors from coming to support me. My first visitor came all of the way from Miami, FL, Ryan Nihls. Nihls and I have known each other since freshman year of college. We've shared our share of sick mornings, post our too many beers nights and early morning Cheez-It nachos; all were self-induced back in those days and we deserved every hung-over morning. This morning was much different, as I wished so badly I felt better to be able to enjoy his visit and just be more like myself with him. Instead, Nihls met the high dose, chemotherapy Tara whose immune system and white cell count has made its way down to 0.2. That's pretty much a nonexistent immune system. Still, he sat there with me, in my room and smiled that sincere, warm smile that only he has, to make me smile inside, even if my face showed differently.
My uncle, cousin, dad and mom, son, Liana, Kellie, Laura, Heather, Shannon, and Steve also came to show their love and support. Two of which came bearing flowers, but were confiscated before reaching my room. No live plants or flowers allowed in the BMT unit. It was definitely the thought that counts, though. Thanks Li and Kellie for tracking down the forbidden flowers on your way out and sending a picture message so I could at least see the Gerber daisies. They were just as beautiful in picture as I'm sure they were in person.
So showering did seem almost impossible, but what I have learned thus far through this life-changing journey, is the importance of taking one step at a time. I knew at that moment, I couldn't move without getting sick, so I just laid there, feeling a bit sorry for myself and a tad defeated. It made me angry that the simple task of taking a shower seemed virtually unattainable. So as it was, I just stayed in bed, closed my eyes, and fell back asleep; it was all I could do.
A few hours later, visitors began to show up and after a while, I was able to move around and what do you know? I was able to take a shower shortly after. So what if the day had already made its way into the afternoon? The point is that I did it. I achieved my goal and, to boot, I made my way out into the hall to see that many of my "neighbors" had already completed their laps and recorded each lap on the community dry erase board and I had completed 0 laps. Not for long, though. Life is all about rising to the occasion and facing challenges, big or small, head on with determination and tenacity; that goes for cancer, too.
I love food. Picky as I may be, I love to eat and chemotherapy is disrupting my happy relationship with food. I used to love scrambled egg whites, now they can't even be in the same room as me. Many of the foods that I love are playing hard to get. Once I put them in my mouth, either they are rejected right on site or at a point a little later down the road. Not much has escaped the wrath of cancer and it's side effects. EVERYTHING has been affected on some level, including my eating habits.
I have to say I was in full company with friends and family that came to visit today. I had my Aunt Shelly come by in the morning, although, the nausea medications made me drowsy during her entire visit. At noon, Bob and Sam came by from work bearing lunch and presents and I LOVE presents! I got a coveted Official Red Wings Winter Classic hoodie and a Superman Under Armour tee. I am Superman, or at least I am trying to be. The coolest gift was a black hard cover book that housed a collection of pictures of friends and co-workers, some of whom I've never met before, holding positive messages on dry erase boards. This gift tops them all. Bob even wore a Michigan shirt and incorporated the team's motto into his message to me (Hail Tara), while my Director of Sales, Steve, made his debut in the book in what seems to be a Chip 'n Dale Runway show, no shirt on and strutting like a closer. I'm the closer, Steve! Photoshop works wonders. In all serious though, seeing all of these people who took time out of their day to write messages to me, gather and send them off to get bound into a nice hardcover book, was truly an honor and I couldn't be more grateful to work for such a wonderful company.
I was also paid a visit by Gloria, Megan, Alice, Kristyn, Vicky, Taylor, R.J. and Megan. It was nice to spend the rest of the day and evening with people close to me and to share this journey with them. I still feel like I don't belong here, like I should be visiting someone else, but not here as a patient. Then when friends come and I struggle with the energy to perform minimal tasks, it occurs to me that I am sick. Or when I look up at my IV pole and see six bags of drugs and other liquids being pushed through the tube that leads to my heart, I think, here I am because cancer is killing me, but I am here for a cure.
Good thing is that my taste buds have spared the Motor City Brew Works pizza with chicken, Fontina cheese, and mushrooms on thin crust. Although I only had a small amount, it was quality not quantity that counted. Thank you R.J. for dinner. I also got my first mail delivery at Karmanos! Three cards and one had an iTunes card, thank you Aimee, and the other gift had a wooden, clutch cross to hold onto thanks to Joanne.
Two more days until I receive my bone marrow transplant; two more days until my second chance at life and two more days until my second birthday. As I sign off tonight, with my bestie Megan sleeping next to me because she is just AWESOME like that, I thank God for yet another day to be present in the moment, no matter if its from room 10210.
Before my stay-cation here at Karmanos, Super Tuesday meant we launched the day off with our weekly sales meeting in the Grand River Conference Room. This was followed by a whole lot of cold calls and a focus on selling turnkey advertising campaigns that had me in and out of appointments with current, future and potential clients. These days were dedicated to high sales activity and I loved every minute of it. The main reason why, was because I was challenged and the day was susceptible to anything and everything going right or going all wrong. It meant staying on my toes and I had to keep one step ahead of the game at all times.
Fighting cancer is much like my job. I have a schedule of what should happen each day, what meds I will be given along with what chemo has been ordered. I even know what mouth-watering food tray that will be arriving three times a day; whether I choose to eat it or not remains in question. Just like my job, I also know that there are a handful of variables that can change the predicted course of action at any given moment. Clients or potential leads sometimes cancel, swap times, change their minds on where to meet for lunch, move the time out 'till after the weekend; the list goes on. Sometimes, my breakfast scrambled egg whites that arrive under the maroon dish cover, look semi-appetizing, sometimes they require a prescription in order to force them down. What I think might be a smooth sailing afternoon, might wind up in a nauseating mess. Sometimes the drugs that they have me on have other side effects that require additional meds to help alleviate the pain or uncomfortableness. Like I said, who knows what Super Tuesday madness might come up around here.
Today's Super Tuesday was a super one indeed. I woke up and hit my goal of walking 25 laps around the BMT unit and, in the process, I also met my neighbor, Steve, who is my main competition for most laps completed per day. He is here, just like me, wanting to hurry up the healing process and get out of here to see his kids. We both have lives that are far different from who we are here; or perhaps not so much different, but what defines us here is not what defines us outside this hospital. He has a wife, a family and a job that keeps him busy enough to not want to take time out for a Karamanos stay-cation. I too have a son, a job that I love and lots of friends that I'd rather see in the D at a Tiger's game versus on the 10th floor of the Bone Marrow Transplant Unit. But here we all are today; Steve and I, my dad, mom, sister, Sarah, Emma and Dave, all together to celebrate the friendships that we've made and hold onto those ties when the rest of the world seems to get a little shaky. Sarah even brought along Team Tara "Losing is not an option" shirts and Dave brought by some movies and radio freebies and giveaways. Who doesn't love a free tee?
And, last but not at all least, Jon came by with dinner from Slows To Go BBQ...mmm; amazing food and even more amazing the company. Both could not have come at a better time.
Stay-cation, Day 4 down.
What is newsworthy? Fatal car accidents, sports scores (very important!) or what about saving lives? Well, I think that they all deserve some kind of news coverage. People seek knowledge and yet some people are oblivious to the things that make a true difference in other peoples lives. SAVING LIVES IS NEWSORTHY.
I ran into Devin Sicilian, a local news personality on WDIV, Channel 4, at the Shinola Store ribbon cutting party. He knows of my story from years past and told me that he would follow up with me after the Shinola party. I was delighted to know that Devin held his end of the bargain. He did reach out to the station to cover my story in hopes that education can once again become a main focus to the masses, along with educating people that the process of donation is MUCH more simplified. It only takes a few large cotton swabs of the inside of your cheek and YOU'RE in! Then, to actually donate (should you be so lucky to have matched a patient out there), the donation process itself is like giving blood. The machines do the hard work and the donor is free to watch TV or just chill for a while and then go home. Life saved.
So back to today, after my morning laps around this place, I got the message that Channel 4 would be here at 11 am along with my doctor, Dr. Uberti, to film me, story, and the team here at Karmanos. I know that waiting for ten long years was torture enough for me and if I can help lessen that waiting period for other patients, then there was no doubt in my mind that I would do anything I could to use my pain for someone else's healing.
Between my family and friends, business owners and clients and now the news station, the nurses probably think to themselves, what did we get ourselves into with this new patient on our floor? The truth is, we are all working together to achieve the same goal and that is to kill cancer. They are far more educated than I am in regards to the medical ways of treating my cancer. I merely have my experience, thoughts and my voice to spread the word as to why it is important to become a registered bone marrow donor. So I use that voice and let people know just how EASY it is to get registered and make most out of each day God gives me here on Earth.
We all have different roles that God has given us based off of His own vision, and I want to make sure that I am keeping my eyes and ears open to any opportunities that can help to save someone's life. I am going to get a second chance at life because of my donor, and I want to spend the rest of my days paying it forward.
And that, my friends, is newsworthy...stay tuned.
It's a strange feeling to watch my nurse hang a tiny bag of clear liquid, dripping from the top of my IV pole into a machine that carefully pushes the toxic chemical through the clear tube that leads straight into my heart. Chemotherapy is my new addition to this long journey to kill cancer. Lucky me, I am given two types of chemo to kill off my entire immune system, my cancerous bone marrow and to make clear for my donor's stem cells. I can't feel it being pumped into my heart, but I am prepped myself, knowing that it's going to kick my ass in the next day or two. Its effects will continue to do so, until the lack of an immune system will overpower it and take over with nausea, fatigue, mouth sores, esophagus and stomach sores, fever, headache, and the list goes on. Sounds like a vacation in paradise.
I have agonized over what I will feel like, how I will tolerate this state of misery, to no end. I am not quite sure how one prepares to feel like total crap. Typically, I like to think of the worst possible situation and when the worst comes, it won't seem that bad, but I have a funny feeling that the worst might be...worse.
This is my life, though. This is my fight. I have cried today watching the first few drops of chemo find its way into my heart. I have watched my family witness the same thing. I do not want to die. I love them. I love my son. I love living life with all of my heart and soul and, as God as my witness, I want to continue to do so. One step at a time. One minute at a time, if need be. There is literally no turning back now and I have to stay strong.
I am a fighter.
Well folks, I have made it. I am checked in and registered as an official Bone Marrow Transplant patient after ten long years of waiting and fighting for a cure. Thanks to my sister, Jason, my son and parents, I have packed up and relocated to Karmanos Cancer Center in hopes of a cure. As I sit here with the Tigers game on TV, typing my first post from my new room, my son is sitting next to me watching something on his tablet, with his headphones on, laughing out loud and making me smile. Thanks to him, I know that I can smile even in a place that makes me feel out of place and uncomfortable. He always makes me smile and that is just one of the many reasons why God has blessed me with him.
I can't describe the thoughts that are racing through my head. Part of me is still me, happy, positive and optimistic in the present moment. I am making friends with the staff, the nurses, and making this feel as much like a stay-cation as I possibly can. Then, like commercial breaks, I get a hard reality check and I am reminded that the next days, weeks, and even months, will be the toughest challenge that I have ever faced in my entire life. I think of how the chemo that begins tomorrow, will impact my body physically. I am not sure how one prepares to feel broken, weak, nauseous, fatigued, and all around sick. I don't know how that feels. I have been living with cancer for over ten years and I can safely say that I have pushed myself through times when I should have been down, but just kept going. I refused to stop and have taken that mindset every single day of this journey. I am still doubtful, perhaps ignorant, to the thought of slowing down and becoming a "patient." However, I am pretty sure that the two kinds of chemotherapy I will be given combined with completely destroying my immune system, will leave me with little to no choice of moving at lightening speed; Tara speed.
So we will see what the days to come will reveal. I have taken my first set of medications tonight...liver protector, anti-seizure meds, blah, blah, blah. Of course, I have requested a print out of each of the medications I am taking in, since I am still me; control freak by nature. I will keep moving forward, taking one day at a time and, if needed, one hour at a time if that is all I can handle that day. I have checked in and won't be checking out for a while, but when I do, I will be doing so, cancer-free. I am ready to do this and there is no turning back. Losing is not an option, that's what I keep telling myself. Cancer, you have met your match...GAME ON.