Let's start with the good news: my white cell counts are slowly going up along with my platelets. Also, my fever took a break, all day, for the first time. I was very happy to shower and beat yesterday's laps with a total of 11 today. Unfortunately, I was hit with a new little friend, GVHD. I noticed when I got out of the shower that my forearms looked blotchy and red. This was GVHD saying hello through a minor rash. GVHD can show signs in various ways and one of them is through the skin in the form of a rash. It is my body's natural reaction to rejecting the new cells that are starting to roam about in my body since, hooray, my stem cells have engrafted and are doing what they should be doing, making new cells. This is why it is so important for me to take it, literally, one day at a time, one symptom at a time, one victory at a time, otherwise, I would be a mental wreck. I have more control over my mental strength than I do my physical body at this point, so that is what I need to focus on.
As I type this, I am also spiking a fever once again. I am still celebrating my full day with no fever, so I'm less disappointed that the fever is back. See, it's all mental, and spiritual, of course, too. I will be calling for some meds to reduce the fever after I am done writing and before I get to sleep; it's a big day tomorrow; my birthday!
Speaking of which, I was paid a visit by two Blue Angels today, Jodi and Mike. There is something that I love, almost as much as living life, and that is watches. I love watches. Just like women love purses or shoes, I love watches, and they knew that. So they went to my dear friend, Sako who owns a jewelry store, and asked him what watch I really wanted, knowing he would know since he is a client of mine, but also a close friend. He told showed them what I like and had one in stock for them to buy. So they bought it and ordered two more, one for each of them, and surprised me today with an early birthday surprise, and surprised I was. I opened the little gift bag and immediately recognized the box, since I have only been eyeing this watch for over a year now. I first told them I could not accept such a big gift and then followed that with a scream, out loud. I couldn't contain my excitement. It was the Citizen Blue Angel Titanium watch I had been admiring for a long time and they had it engraved with my name and my transplant date, making it that much more special and personal. Thank you from the bottom of my heart, Jodi and Mike, you guys really know how to brighten someone's day and I am so very grateful. Plus, since you bought one for yourselves, I have to say that you have great taste in watches. :)
Truth is, I have hundreds, maybe even thousands, of angels around me. I might be the only patient that gets “fan mail” every day and every day I smile because of the kindness and generosity of so many family and friends that I have met throughout the years. Life is so rich when you think outside of monetary terms. Love, friendship, companionship, all of it, makes my life so beautifully rich. I am so lucky and blessed to have this support and encouragement through this time of my life. Here's to a great day tomorrow, regardless of fever, GVHD, or whatever else, it's a day to celebrate life and I can't wait. This is why I love my birthday so much. It's not about getting older, but about celebrating another year that God gave me to love those around me, to take nothing for granted and, now, share this journey with so many.
This morning I was thrown an early birthday party right in my hospital room by all of my Lake Orion girls, Shannon, Elisia, Jennifer, Jamie and Tara. Elisia played guitar while everyone sang "Happy Birthday." These girls are the BEST. They even baked funfetti cupcakes and brought candles for me to blow out. Tara made custom tanks and tees that say "Team Tara Never Give Up Hope". So of course, I had to try and get out of bed and make a few laps with my girls; we made it five times around the unit, which is three more than I did yesterday and I was pretty proud of that!
The kindness and generosity that I have received from family, friends, co-workers, clients, strangers, and even the Detroit Tigers Organization, has humbled me beyond belief.
With the joy I felt having my own little birthday party, physically I am still struggling. I have never felt so sick in my almost 34 years of living. The fever of 103 later today knocked me out and the movement of sitting up, alone, was a nightmare. Funny how much I love that these stem cells are showing signs of engraftment through gradual increases in my blood counts, but they are taking every ounce of my energy and strength while they begin to find a home inside of my body. I knew that this would be hard, but, being downright, rock bottom sick, I was foolishly not expecting.
Good news though, the stem cells are engrafting. That is what I am trying so hard to focus on.
Maybe my new cells will give me a break on Thursday, so I can spend most of my actual birthday awake and not shaking from high fevers. Hope, just like Tara's shirts she made say, "Never Give Up Hope." My primary nurse, Natalie, brought in streamers and some birthday decorations to my room, since she won't be working on my actual birthday, and she totally decorated my room! See, there is a lot to be happy about, even if it's as simple as blue and orange streamers hanging around my room. It's the small things in life that mean the most in life.
102, that's the fantastic fever I had today. I woke up to my normal blood draws, but this morning, since my fever had spiked overnight, I had an extra poke in the arm for infectious disease testing of my blood. I fell back asleep and did not move or wake up all morning. I slept through breakfast and through various people popping their heads into my room all morning. I woke up when my nurse, Taylor, gave me a goal to try and shower by noon. Noon seemed impossible to me because the slightest move or turn of my head, alone, was exhausting. I had chills as a result of my fever, so the last thing I wanted to do was take my clothes off and shower, but I did. I accomplished my shower and was very proud of that.
After my shower, I crawled back into bed and my dad showed up. I was happy to see him, but you wouldn't know it, because all I could do was lay in bed and sleep. I slept through his entire visit and didn't wake up until about 5:30 pm. My dad, and entire day, was gone. Somehow, I managed to make it two times around the unit. Pretty lame lap count considering I've completed 48 laps before, but today, two was all I could muster. At least I managed those.
This is truly a fight. I fought with myself just to make it out of bed. At one time, I just laid in bed, feeling defeated and cried for a minute, but I fought back the tears and kept pushing myself to stay strong mentally, even if physically, I was broken. I didn’t know the meaning of weak, until now. This bone marrow transplant has given new meaning to sick, weak and tired.
For years when people would discover that I was a cancer patient, 9 out of 10 people would say, "You don't LOOK like you have cancer." For years I thought to myself,"What am I supposed to look like?" Am I supposed to be pale, jaundice and bald; what DOES a cancer patient look like? Clearly, it wasn't what I looked like on the outside. I felt like I was either, surprising people with my healthy look, or disappointing a few that I had hair. However, I FELT like I had cancer; I felt fatigued, sick and very weak at times, all due to my low blood counts that I had as a result of cancer.
This morning I woke up late. The night before I was battling severe back bone pain. It was a pain that took my breath away and fought nausea, to boot. I have been able to tolerate the nausea, but last night I broke my "not-throwing up" streak. It was terrible. Sleep was not a friend of mine and the little sleep I got, I woke up to instant nausea this morning. The fun never stops around here. I called for my nurse and she brought me meds for nausea so I could at least get out of bed and take a shower. Taking a shower was goal #1.
I headed to the shower, with my IV pole sitting outside of the shower, and began completing goal #1. Then a strange thing happened when I went to wash my short pixie style hair that I got right before being admitted to Karmanos. There seemed to be more than just suds in my hands as I worked the shampoo through my hair. I lowered my hands and saw white bubbles and handfuls of black hair. It scared me at first, seeing so many hairs in my hand. I rinsed my hands off and continued to wash my hair, but more and more clumps of black hair kept filling my palms and between my fingers. I then decided to gently pull my hairs with the water running on my head to get whatever hairs were loose, but to my surprise, it didn't seem to end. More and more handfuls of hair fell to the shower floor until the entire drain was covered with hair as well as my entire body. I quickly rinsed off my head, washed up the rest of my body and turned the water off. I stepped out of the shower and looked into the mirror. I could see patches of missing hair all over my head. I knew that this would happen, that's why I cut my long hair off before transplant, thinking that if anyone was going to take my long hair that I loved, it would be me. Still, prior knowledge of this happening didn't lessen the blow. It was hard to see; the minor side effect of cancer, but that's exactly it. It's because of cancer that I am seeing myself with bald patches. It's because of cancer that I am losing time with my son, hair on my head, being with people that I love; I hate cancer.
Back to my reflection in the mirror. I knew I would have to shave my head to avoid any further "hairy shower" experiences. Plus, I didn't want to find hair all over my pillow, bed, etc. throughout the entire day and night. It just so happened that my friend from work, Sarah, was planning on coming up later in the day, so I asked her if she could come early and shave my head, knowing she used to be a hairdresser. Sarah is an incredible woman. She's full of life and love, making her someone who you want to be around all of the time. She was in my room soon after my call, hair clippers and smock in hand, and began to shave off all of my hair. It had to be done and I was actually happy to know that I wouldn't experience clumps of hair coming out anymore, even though shaving my head was not something I was looking forward to doing.
So, NOW, I look like a cancer patient, people. I have the iconic bald head so I "fit" the cancer image. There won't be anymore confusion for anyone from here on out.
Today I experienced quite a lot of pain in my back. It started as a mild ache, but quickly progressed into a deep, throbbing pressure that consumed my entire lower back and pelvic bone area. Dr. Uberti said that this might occur around the time the stem cells begin to engraft. I had no idea that the pain would be so intense.
This pain progressed after my family left. I am still in a great deal of pain and because of it; this might be the shorted post, to date. It's hard to gather my thoughts and type when my pain (now, well beyond a 10) is, literally, the only thing I can think about.
So like my son said when the discomfort first started this afternoon, "Pain is weakness leaving the body." I say weakness get out of here, I have no use for you. Strength is only thing allowed in this little body.
There is one person in my world that can make me smile, regardless of how much pain or sadness I am feeling. There is one person in my world that defines what love truly is; unconditional, unwavering love. There is one person that can comfort me beyond belief by just sitting in the same room with me, not saying a word, but just knowing that he is present brings me joy and peace. This one person is my son, J.
Living in a hospital room, confined to only this unit and never leaving beyond the double glass doors that all of my visitors go in and out of all day, is challenging for someone like me. I thrive off of moving, keeping busy, never stopping and always looking forward to what's next. My dad used to say to me, over and over as a kid, and even as an adult, "SLOW DOWN!" I think he knows by now that I don't know what "slow" means. Unfortunately, this fabulous disease called cancer has forced me to slow down completely, almost to a dead halt. Pushing myself and moving forward is a passion of mine and when robbed of that, it has created a little cloud over my world and, at times, makes me downright frustrated.
This is where my "one person" comes into play, my J. I haven't seen him since last Saturday and, by last Sunday, I was already missing him. Imagine what five full days without seeing him or having him near does to me. It tears me up inside. Today was the end of his absence and seeing him walk through those double doors with my parents from "outside" into the BMT unit, instantly brought so much happiness to my heart, it's hard to put into words. I don't know what it is, but the bond between and mother and her son is something special.
J stayed with me all day. He walked laps with me, taking on the job of marking each lap on the dry erase board and he even found a way to write on the message board "Tara is Lame" without me noticing. When I finally discovered what he wrote, I just looked at him and he laughed; I laughed even harder. He's hilarious and sarcastic humor entertains me. It's exactly what I need here when my mind is filled with so many other serious thoughts. We ordered Detroit One Coney Island for dinner since they deliver to the hospital; large Greek salad, fries, a hot dog and an 18 piece wing ding dinner. Guess who ate what? So we watched Anchorman, ate dinner, watched the story on my transplant and bone marrow donation on WDIV together and just did what we normally would do any other night, chill.
Today my white blood cell count took a new record low, coming in below a 0.1, so my fatigue was pretty hard to fight throughout the day. Although I dozed off a couple times, I woke up and looked over and felt comforted upon seeing J sitting in the chair next to my bed. A couple of times he would ask, "Are you ok?" and, secretly, I wanted to cry just knowing that he loves and cares for me like he does. He is a 17 year old boy and acts like one, as he should, yet in so many ways, is matured beyond his years. When push comes to shove, he rises to the occasion and has my back. This is his summer vacation and he's spending it in the hospital, watching his mom go through chemo, a transplant and fight to be healthy enough to make it out of the hospital. Proud is a drastic understatement when it comes to how I feel about my son. He is simply the greatest human being alive and I do not know what I would do without him. I fight to live because I love living life, but I fight even harder because I love being a mom.
God has a plan, this I am sure. He gave me J and that was one of the best days of my life. Now I am getting a second chance at life and I vow not to waste one day that I am given. I swear to make the most of every minute this day forward. Today is a gift and that is why they call it the present. I love gifts and am thankful that one of them in my life is J.
Small victory last night...no fever! That doesn't mean anything in prediction for tonight, tomorrow night, or next year, but I DON'T CARE. Last night I didn't have a fever, so I am celebrating. HOORAY!
I guess a good night's rest means busy day to follow. I get blood drawn every morning, anytime from 2:30 am to 5:00 am, so when my doctor rounds the floor in the morning, the results are back from the lab for his review. Mine showed low hemoglobin, so I was ordered to have a transfusion of 2 units of red blood cells today. Once my new stem cells start their cell factory, these transfusions will become a memory, but again, this is a journey, and a slow one at that.
I was able to make someone else's day today, though, and that was worth getting a good night's sleep for. Dee, my new friend who makes sure my room is germ-free, came to visit me and told me some pretty awesome news. She was recognized through email and also given a gift card for the compliments I paid her when talking to the staff here at Karmanos. Dee was happy, so that made me even happier! We celebrated with a fresh caramel drizzle Keurig coffee this morning and a high five. She's the best. It is truly people like her that make this "not so fun" stay very welcoming and comforting. ALL of the staff, nurses...everyone have been more than gracious and caring since the first day I moved in.
More good news! My new friend Jon got his bone marrow transplant this morning. He is a few rooms down from me and I have talked to his wife in the hall a few times. I am excited for him and it makes me really think about all of the people on this floor, all fighting for the same thing as I am; a cure. They are all brave and strong. I admire them, some doing better than others, but all fighting and that's what counts here.
Speaking of people that fight, Nikki, a girl I met years ago when she was getting her own bone marrow transplant, was on my floor today. She comes here periodically for pheresis and is still fighting the good fight with long term challenges post transplant. I was able to go and visit with her and even got the chance to meet more of the Karmanos staff I hadn't met yet.
A lot of great things happened today, now that I think of it. More fan mail came! Teresa and Emily both sent me cards to add to my growing collection on my wall. I love it because all of the cards hang on the wall facing my bed and I am reminded of how many people are cheering me on. I lean on that support more than anyone knows. I also set a new personal best for number of laps completed around the unit today, 48 laps! 16 laps equals a mile, so that means 3 miles logged for this girl! 5+ days post transplant and I am pretty proud of myself, as I remain focused on my goals and determined to never give up or make excuses for myself because of how I feel. Trust me, easier said than done.
Although my son didn't make it up since he just got up to date vaccines today, so it was suggested he wait a day to visit, it helped to see a lot of my friends as my heart felt sad since it's been days since the last time I saw J. I had visitors throughout the morning and day, including Alice and Tim Doppel, who I consider an extension of family to me. They are truly a gift from God. I've known them since I became a registered parishioner of St. Blase Catholic Church. If I could pick one couple that are an example of God's love, it would be them; hands down.
The night was complete with Girls' Night In with Emma, Heather, and Sarah. They came to my room with dinner, movies, stories and laughs. Congratulations girls, I went all day without bad stomach pains, until you ladies showed up. That's ok; the stomach pain is from laughing so hard. I love you guys and you rock my world.
Day +5 people...one day at a time.
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.