If I had a fraction of my little nephew's energy, this bone marrow transplant recovery would be a piece of cake. He came to visit me yesterday with my sister and it's absolutely amazing how God put so much energy into one little human being. I wanted to ask him to give Auntie Tara just a little bit of what he has to get through this healing process a little easier. He probably would if he could, but then what would he have to keep my sister running after him?
This slow-moving process of healing, I admit freely, is the most difficult part of the entire process. I know that my body has hit rock bottom and moving back up will be a very long road. I don't even want 100% energy; maybe just enough to make me feel a little bit more like myself. I am so dependent on people now and having to take rests constantly, stops me from moving like I normally would, throughout the day. Sometimes, I feel like a failure, even though I know deep down in my heart and mind, I am not. I get so frustrated that I have cried in the past couple days in my disappointment with myself and my ability to walk longer distances. I make a bowl a cereal, eat it and then I am forced to lay down because even that is exhausting. I suppose I have good reason to be frustrated, but still, I despise the negative feeling and try to avoid it at all cost.
I am proud that I have remained fever-free since my discharge from the hospital. I am proud that my skin on my face is beginning to heal and look better. I am even proud of my little appetite growing slowly during the past few days. I am blessed and thankful to be where I am, living with Tim and Alice, who have taken me into their home as their own family and provided the best care for me. I am happy to be alive, blessed with wonderful family and hopeful that more energy is right around the corner.
Thank you for reading and traveling this long road with me. It makes me comforted to know that so many people are reading and “feeling” right along with me. It's like I have this vast support system out there, cheering me on, and trying to understand how difficult this is. We will keep moving forward and continue to pray. I will beat this, maybe not today, but I will. Remember, I hate losing and losing is not an option.
Well, I made it out of Karmanos in 5 weeks and 1 day. Although I am extremely fatigued and my healing is just beginning, I was approved for discharge, as I have remained fever-free and have been able to control my pain without using a patient med pump. So I "moved out" and ended my stay-cation on the 10th floor BMT Unit. Natalie, my primary nurse, along with the entire staff at Karmanos have given me the best, of the best, care. I have never received such wonderful care at any hospital in the past 10 years, as I have at Karmanos. A bone marrow transplant is no joke. I have never been so scared in my life, going into the transplant, as every patient is different, every outcome is different, and a cure is never guaranteed. I owe it to the nurses and staff, for helping me heal and start my journey to recovery and living cancer-free.
I must say it was strange passing through the double glass doors and making my way outside for the first time. It's like I am reborn, in a sense. Everything is changing or being rebuilt in my body, skin, taste, blood, everything, so I almost feel like I am learning who I am physically with each passing day. Somedays I can tolerate certain things and other days I can't. This is the ultimate test of patience. I have to be patient with myself and my body as I continue to heal and hopefully get stronger and stronger over time.
I consider myself a very positive and optimistic person, so I lean on that now more than ever. I am positive I will beat this and eventually, get back to being the fast-paced, letting nothing stop me, Tara. In fact, I will probably never stop! I don't know what it is like to live with normal blood cell counts. I have been living with such critically low blood levels for so long, that it's normal for me. Not anymore, though. They say that there are milestones post-transplant, +100 days, a year and the big one is actually 5 years, without signs of cancer. At that point, the bone marrow transplant is deemed a true success and I can confidently say that I beat cancer and am totally cancer-free.
For now, I am celebrating my release from my hospital stay and that's reason enough for me to celebrate. In fact, there are a few things I am celebrating today; no fever, no pain, more energy than yesterday, and my angels, Tim and Alice, who have taken me into their home to help me heal. My parents are my biggest support and because they love me so much, we knew that me staying at their house could be risky, as they have pets and that could pose risk for infection, as my immune system is very suppressed due to some of the medications I am taking. The last thing any of us want is a trip back to the hospital. So Tim and Alice, who I have known for years through St. Blase, have made me feel right at home in their house and I love them so very much for being there for me. God always has a purpose and a plan for all of us and it is by no mistake that He brought them into my life. He knew exactly what He was doing, as he always does. Amen to that.
Rest seems to be the name of the game today, so this will be short and sweet. Sometimes my mind and body just stop and so I am learning to listen.
As I close my eyes tonight, I am comforted in knowing that there is a good chance my stay-cation might be over as soon as tomorrow. Depending on how I do tonight and tomorrow morning, my doctor will make the final decision. Although my geography will change, my protocol for rest and healing will be more important than ever, outside of this hospital.
I was greeted this morning with a visit from J and Jeremy today. I feel like I haven't seen J in weeks, but he kindly reminded me that it's only been a few days. I suppose a day without my son seems longer that it really is. Nonetheless, it was great seeing him, braces-free, and his dad. We talked and took a few laps around the unit to give Jeremy the grand tour of my stay-cation resort.
Soon after, my mom arrived, all by herself. I point that out because she is not one to hop on the expressway, unless she absolutely has to or her daughter is stuck in Detroit in a hospital! I'm proud of her and am blessed she was able to make it to see me today. Jeremy and J left and then Barb showed up from Be The Match. I was so happy to see her and so was my mom. My family has known Barb for 10 years when I was first diagnosed with cancer and she has not only been a great support, but a close friend and now part of my family. She helped me coordinate my first bone marrow drives when I began looking for a donor and we were able to add many donors to help save other lives. She wants a cure for me just as badly as my family does.
You know, part of me is really missing the outside world. I miss driving my own car, running up to Target, going out to eat and actually tasting food and enjoying the flavor. I miss my cat, Saber, and his annoying meow at 5 am when he has decided it's time for breakfast. I miss the feel of the sun on my skin and going to Tiger's games and especially Lion's games, now that football is back! There is nothing I love more than going to live sporting events. I even miss walking for more than 10 minutes without having to sit and take a break. This whole "patient" thing is not me, but it is now. Accepting illness is a hard pill to swallow, but the hope that I hold sacred will continue to save me through this time because, in all actuality, this is just the beginning. The road to a full recovery is a long one. A year, minimum, is not far fetched at all when it comes to getting back to "normal."
This experience will not go down in vain. Somehow, people will be touched as I begin to share my story with everyone, not just friends and family. I always say, "GO BIG OR GO HOME." Eventually, I'm going HUGE.
Today was perfect. No, my pain didn't vanish; it actually took a small step forward to my delight. Unfortunately, I am still not on the list for discharge, yet. What made today perfect had nothing to do with my medical progression. Today, I spent the day with my dad. He came up late morning and we just hung out, him and I. He made his Keurig coffee and read the newspaper while I worked on my laptop for a while. We just did our thing; no conversation needed.
We decided to switch lunch up a bit, after mine came up to the room from the cafeteria and it seemed that some meatballs found their way into my vegetable soup. We chose Detroit Coney One delivery and watched the television show, Suits, On Demand. Turns out, I am behind, a couple episodes, and the new episode airs tomorrow on USA. So dad and I had a picnic lunch by the window in my room, laptop open to stream the show and watched two episodes of Suits. We even managed a few laps around the unit along with meeting one new patient along the way.
No one ever wants to be confined to a hospital unit and room for weeks or months. I get mail here, literally, and at times I feel like I really am a resident here. I haven't seen the outside of this unit or hospital building since July. If I think of this situation that way, it makes me insane, so that I why I try so hard to decorate my room with cards and gifts that people have sent me to make the walls that I see everyday look more like "Tara." They are covered in Detroit sports posters, pictures of family and friends, and whatever else I can think of to kill the monotony.
Life should never be monotonous. God didn't give us the gift of each new day to waste it away, making little use of the blessings He's given us to share with the world. Even if it's only sharing with one person. That one person you might touch could potentially made a positive mark on their soul, forever. Just like today with my dad and I. He made a mark on my heart that I won't ever forget. It was time with my dad, eating coney and watching Suits in the hospital room. Nothing is "normal" about going through this "cancer stuff" and nothing can make it go away, but certainly life must be lived, despite the circumstances. Love should be shared and that is the most important thing to remember as long as we have time here on Earth .
Thank you dad for your company, loyalty, and love for your daughter. I had the best day with you.
Today was a pretty decent day compared to the last couple of weeks. I was happy to be up and showered by 10 am and feeling not totally exhausted. I felt more energetic knowing that J and his dad would be up to visit and my parents, too. Unfortunately due to scheduling, I ended up not being able to see any of them, however, my sister did come up later for coloring Part 2.
Friends are essential in healing process, along with family. I had friends come up today, Mike, Nancy, and Megan, to keep me company and just to have someone there. Nancy came with massage equipment to help alleviate some of the lower back pain and leg pain that I need to get rid of in order to be released from here. Megan came equipped with time and love, that's why I love her. I can sit and say nothing at all and have her near me and feel comforted like I have never felt with any other friend. She is more than a friend; she is my family.
I know that day-by-day, I am nearing the end of the stay-cation. It will come down to the point when my pain remains under control and I can be totally off my IV medications. Once this happens, I begin my new healing chapter outside of these walls at Karmanos. It's like moving my exact same routine from Karmanos, but outside of the hospital. I won't be working, shopping, etc. I will be healing, taking it easy and catering to my fatigue. It's all part of the journey. I'm committed to healing and patiently waiting to feel like myself again, but better...more improved.
Thanks for all of the well wishes and caring enough to continue to follow my story and perhaps take something from it along the way.
I’ve been at Karmanos for over three weeks now; away from the normal everyday lifestyle I was used to living. It is an extremely hard adjustment. I’ve been subjected to numerous medications, beginning with chemo, transplanting someone else's stem cells in my body, which my body doesn’t like creating all sorts of complications, and a whole slew of other things as each day passes.
Through all of this, I have shared many thoughts, dreams, fears and hopes. This journey is so hard; it really is. Nights are the worst. Pain seems to awaken during the overnight hours, which is lovely and oh so comforting. Falling asleep is hard as well. Even my Deep Relaxation Pandora One Channel doesn't do the trick. So I toss and I turn, I pray and think of my family. They are my refuge when I need them and even when I don't.
My dad, mom, sister and son have been relentless in their unconditional support to ensure that this fight will end up victorious. That is love; a bond that connects my family and I now and forever. No family is perfect, but I know that I am in the best family through this life-saving journey. They are the ones that will lift me when I am falling and cheer the loudest when I am cancer-free.
Love your family, keep them close to your heart and make sure THEY know you love them too.
I love you dad, mom, Dawn and J. You guys are my heart and soul!
I am pretty sure that watching pre-season Lions football is not part of the healing protocol process for bone marrow transplant patients, but not every patient is the same. I can tell you that I had a little bit more energy knowing that the boys would be back at Ford Field. Any energy is good since I feel like someone stole all of mine.
My pain is being controlled. I have an incredible Team Tara here on the BMT Unit and makes me feel very comfortable. Natalie even painted my nails using the cute nail kit Meg gave me earlier.
Time to watch the Lions first pre-season game and hopefully get some rest!
I have learned that intense, constant, pain is not only painful, but also causes so many other things to happen in the body. I have had constant pain (with a break here or there) for the past five days and it has been debilitating. It's primarily caused from my new stem cells in my marrow.. It is painful, but a pain I’ve never experienced before in my life. It lives deep inside my bones and nothing relieves it. We are hopeful that it ends soon, but it's just too hard to predict.
This excruciating pain has lead to fatigue, headaches, frustration, lack of appetite, less laps completed around the unit, and more. Some of these side effects are caused directly from the pain in my legs and some are from the pain medications I have been given through my IV. It's been a nightmare of a cycle that I seem to routinely deal with now, everyday. This has got to stop. My doctors and I have increased my pain medication orders so that I can try and stay in control of the pain, rather than letting myself reach a state where the meds are just trying to catch up with the pain. So, to say the least, today was rough.
Days like these really make me miss my son and my family, the smell of being outside, work; all of the little things in life that happen outside of the hospital. The good news is that I am about to go to bed. With little sleep last night, I am exhausted tonight. The even better news is the thought of a new day, or the hope of tomorrow, and that is definitely something to smile about.
Today I felt good enough to shower and complete multiple sets of laps today. Although far from feeling great, I will take any progression that I can get over total fatigue and not moving out of bed. So, I set out with high goals in mind, making my laps around the unit and marking each lap as I walked by the dry erase board. I proceeded to add another mark to the board when I looked up and saw Stacey, my bone marrow transplant coordinator, standing there with a younger looking man. I don't usually see her unless she is giving a tour of the unit to a new patient, as she did for me before I was admitted.
This time she was standing with a young man and I automatically thought that he was going to be joining our floor soon, as a patient. Stacey introduced us and she told me that she was actually showing him the apheresis room where he will be going to donate his stem cells to help save someone else's life. At that very moment, everything came full circle for me. Perhaps it was just seeing this man in person, knowing that another man, somewhere in the world, did the exact same thing at another Cancer Center to help save my life. I looked at him and couldn't help but tear up and say thank you for saving someone else's life. I told him that he might not be saving my life, but I waited 10 years for someone like you and you are about to give someone the greatest gift that they will EVER receive. Stacey added, "You're a hero;” I agreed. I just wanted him to hear it from a patient that he truly is a hero and his commitment to being a donor is about to give back someone's chance at life.
It was just by chance that I got to meet him before he goes off, saving someone's life, but I won't forget it ever. After I beat this horrible thing called cancer, I want to be a voice for others. I want to share my story so that more people walk into Karmanos as donors rather than as patients. I want people to see someone who never gave up hope, even after a decade of waiting for a match, because miracles DO happen and good things, no scratch that, GOD'S PLAN does reveal itself. The rest is easy; live life and love living it. Find your joy. Take nothing for granted and love with all of your heart and give thanks everyday.