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.