Just to keep everyone in the loop, Sunday was exhausting for me. My sister came up to visit, but I was such a terrible host, she left and I went back to bed. I was woken up by nurses throughout the night, but basically slept from 7pm to 7am.
I write this only because I do not know how much I have left in me later, so it means a lot to reach out when I can.
Ok, so woke up this morning with an after-birthday party celebration hangover, yet this one was a little bit different than what you may think. Yes, I was tired, but considering why I was tired had nothing to do with parties, gifts, cakes and all. I looked at the clock and it read 11:00 am and I was still feeling exhausted. My engraftment syndrome has become quite severe since I was given more stem cells than patients normally receive, so the body and bone aches are normal, yet my fever and chills still seen to linger too.
You might begin to know the daily routine here, goal #1? Take a shower. That wasn't too bad, so I was in and out of there, productively, yet swiftly, in about ten minutes. Then I napped or at least I tried to lay down for a bit. Fatigue has now become a challenge that I face everyday. Just another one of those things I fight with. I fight with myself to shower, to get dressed, to GET MOTIVATED, TARA!!!!
Today J came to visit and spend the night me. He got me walking and laughing and, what do you know? We got up to 22 laps total! Thank you, J, you have no idea how much I love walking with you because its like we're not walking for laps, but merely walking, talking and laughing.
So I will let you in on a little secret. I have been going though such a nightmare of stem cell engraftment pain in my back and legs. Sometimes it's helpful to get some good news! The chemo killed my entire immune system, as it should have and did, and my counts came down to 0.1 or less for days. My platelets were critically low too, but to me, they actually didn't seem that bad, just the bruising was the worst sign of the low counts. I've lived this life walking around with blood counts this low, so it seems almost normal to me.
Well friends, I am headed to higher counts, ALL BY MYSELF! Today my WBC were a whopping 4.3 and my platelets are 116!!!! I have NEVER seen any number remotely close to those so you can only imagine how ecstatic I am! It makes the bigger picture easier to focus on through the pain and fatigue!
I wasn't quite sure how I would celebrate my birthday in the hospital without a restaurant to go to family and friends. Ironically, I think I had one of the best birthday celebrations, to date, as I turned 34 yesterday in the hospital. My nurses and friends decorated my room with streamers, balloons and banners along with my iv pole, too. 12 mylar balloons, 5 banners and one handmade banner by Natalie, plus cute plush flowers that twist themselves around anything in the room, made for a very festive suite on the 10th floor.
This set the stage for a daylong birthday celebration. My mom, dad and son came up and, soon after, it seemed to be a steady stream of well wishes and familiar faces who all drove to downtown Detroit just to see me on my birthday. Mike and Emily, from Doner (the ad agency I used to work for), showed up with my all time favorite burger, the Redoat Tavern's Piedmontese burger with lettuce, tomato, onions, pickles and avocado. DELICIOUS! To boot, Dan and Ann Marie West and their daughter, Samantha, showed up with a box of Astoria pastries from the Astoria Pastry Shop on Main in Royal Oak. The box was packed with an assortment of gourmet cupcakes and chocolate cookies. Thanks to these yummies, my appetite came back for a minute and my stomach seemed to be happy for the first time in a while.
My nurses had to take out the fold out bed from my room and replaced it with more chairs to accommodate all of my visitors that day. One of the many people that stopped by was Mr. Nick Karmamos. My family, including myself, commended him on the wonderful staff that they have on hand. He was thrilled, as he should be, to have good people working for him. We took a picture, which I will post at the end of this post, and he was off and I was too, to visit with more friends who showed up to my room.
All of the staff nurses were even allowed to wear their Tigers shirts in honor of my birthday! I was excited to see everyone looking like we were all going to the game together; maybe someday! At least we all matched the décor of my room! More importantly, we all matched in spirit, and that is in love, hope, and faith. I believe in them and they have hope in me to push through this time. I have truly become close with the nurses here on the 10th floor love them so much.
In regards to gifts, I got a HUGE gift, one that I have been blowing out many candles for; a bone marrow match. Well this year my wish came true! I also received sentimental, heart felt gifts, fun gifts, a ton of Godiva Chocolates, cakes, cookies and an edible arrangement. I got clothes, books, and extra special hot chocolate straight from Paris, France! I CANNOT wait to have this treat and CHEERS with RJ King!
So many visitors all throughout the day and so many people I am thankful for, what a perfect birthday. It was just wonderful on so many levels, but most of all, it began waking up knowing that I will finally be given a second chance at life and THAT is a gift of a lifetime.
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.