It has been a little over a week since I was released from the hospital for the second time and I am once again perplexing my entire medical team…. or as my nurses point out, keeping all of my specialists on their toes. I will be honest, It has been a really hard few weeks as I recover from my chest tube procedure and extended stays in the hospital and both the emotional and physical pain that comes with that. I have been doing all that I can physically stand to do to distract myself from the fact that I have again been reminded that I am that .1% and as always I fall into the rare category with everything. As hard as it is for me, I have I to admit that I have had some of my lowest points since the very day I was diagnosed these past few weeks and, I actually took my positive and hopeful hat off and just felt, sad, frustrated, and even mad that I am still going through what I am going through 17 months after my diagnosis. I had prepared my mind and my body to face a year of sickness and pain in prepped both my mind and my body for the hardest battle of my life, however that was all with the expectation that after those very horrible and trying 12 months of treatment and surgeries, I would again regain my life or at least feel better, not worse.
However, here we are a year and a half later and I am still being wheeled off to unplanned surgeries, and sitting in the infusion chairs far more then I would like to admit. As this point, my mind is sharp, my determination is strong, and I am ready to jump back into life, however my body is fighting me a bit on how soon this transition can and will happen. My team is again reminding me that my journey with breast cancer specifically is not the norm and I shouldn’t compare or beat myself because I have had to face many obstacles that do not arise in most or any other cases.. I have heard this from the beginning, and I have taken it in stride because to me, my journey is all I have ever known. With each curve ball I have been thrown, I have held my head high and forged through with an optimistic smile. I really never have looked up to the sky and asked why me which until this past week. I have faced every single sad, scary and frustrating day with true and real optimism and I have always believed that everything that has and is happening to me, was part of a greater and bigger plan for me in the long run a test of sorts that would take me where I was meant to be, but for whatever reason these past two surgeries and past 3 hospital stays have gotten me pretty down. I am not sure if it is because I am again trying to come to terms with the fact that it seems that no matter what, my path always comes with scares and complications or if it is just all catching up to me, but after a week and a half in the hospital, I had, just plain had enough. I wanted to go home. Ok, really I wanted to run out of the hospital and run away from everything that my life has become. I just wanted to disappear and pretend none of this was happening and although I know my medical team at Butterworth had a good reason to wanting to keep me admitted there was no stopping me. I just had to get out of that hospital and breathe, because in my mind I was literally going a little crazy.
For the first time, ever I got angry that I have been dealt a crummy hand and I felt sorry for myself. My husband was nervous to take me out of the hospital without full approval of the doctors, however I think he could see what was happening inside of me and he knew that I really just needed to break away. Within in seconds of being in the car, I started to cry. As we drove to get my prescriptions, I said, “I’m sorry. I know you didn’t want me to go, but I had to get out of there. I just cannot take it anymore.” I was struggling to keep up with all of the amazingly inspirational texts, cards, and posts, and I realized that I really just needed to “tap out” of the reality of my life and pretend that I wasn’t “Tammy the cancer patient.” Jordan could tell I was a mess, and I’m not sure he knew what to do. He reminded me that I needed to cut myself a break because it has been a crumby few weeks, as I watched quietly out the window, but it wasn’t helping. Everyone I saw seemed to represent something I no longer have in being out and about enjoying life. That alone seemed to fuel my frustration even more as they reminded me of how much I am still loosing in this battle. With the flip of a switch I was crying again.
As I looked around I secretly cursed the young women with the beautiful long and curly hair walking into Meijer with her toddler for being able to live her life without illness and pain and share special moments with her daughter, I felt sadness as I watched a young couple playfully swinging their child as they walked to the car because those are moments so few and far between for our family, and I felt sorry for myself as the IV pain meds were wearing off and I was of course realizing that I had a painful rude awakening of a recovery heading my way yet again. I mean really I was the poster child for not getting breast cancer in the first place, being that I have no family history, I do not drink or smoke, I have kept a healthy weight, and I have always stayed pretty active but, I faced that with an optimistic smile. When I got my first of many infections I told myself this kind of thing happens and stay positive as they wheeled me off to an emergency surgery to remove my infected expander and officially leave me one breasted. I came to terms with the reality that our dream of bringing another baby into this world the natural way was no longer possible and looked for a bright side, I even laughed and embraced my newly bald head and ever changing body, and I have stayed very positive and optimistic with every single recurrence scare and re-scan, but now a hole in my lung lands me again in the surgical wing! Really…. only me? And this has been becoming quite clear to everyone as I even received a sweet text from the diagnostic radiologist I met in this first scary days saying “you really are that .1% Missy!” I shed a lot of tears that first day home and felt quite low, however it seems the universe knew exactly what I needed in that very moment, because little did I know I had a very special surprise visitor coming my way the next morning.
My amazingly inspiring heart friend Vicki who has also faced breast cancer herself 6 years ago and the very person who unintentionally inspired me to share my own journey with all of you had been supporting me through each step of my journey from a far because she has been traveling the world in her first few years of retirement, was finally back in the states and planning a surprise visit. She had planned on spending some time visiting with me in the hospital, however now that I was home, she came knowing she would take me to my infusion appointments and just spend a relaxing “girls day” with me. Her timing could not have been more impeccable or more meant to be. As we walked into the infusion center where I have received all of my treatments and infusions including all of my chemo treatments, my whole world or journey seemed to come full-circle. There were so many times that I felt Vicki there with me in spirit, however this was the first time she had actually been there in the flesh. I could tell it was as surreal for her as it was for me. She sat by my side as I received fluids and IV medications for my nausea and migraines, and then we ventured out but not before a quick tour of the beautiful hospital I have been describing to her for over a year. We had nothing planned but an entire day together. First stop was lunch at Bistro which just so happens to be the restaurant that I have celebrated each cancer milestone. We sat outside and soaked up all the sun we could get. Sharing stores from this past year and mostly talking about all that I was dealing with and how I was feeling. We talked about her amazing adventures and her latest trip which was a bike and badge tour of Europe, she listened to me as I vented, reminded me to have self-love, compassion and understanding for myself, and she reminded me that it’s ok for me to stop worrying about what others think for a few days and just take some time for “Tammy” or in a sense, tap out. After an amazing lunch she spoiled me a bit with matching pink pedicures, and we headed to the bakery for a dessert.
Our last stop was to Sip Organic Juice Bar, which has also been a huge part of my cancer journey so we could take cancer-fighting elixir together for the first time ever. As we sat there I think we both realized how amazing and how meant to be the entire day had been. My heart was filling with warmth and my eyes were filling with tears as she tearfully held her wheat grass shot up high and said I would like to purpose a toast that you are blessed with many more days like to day. She said “ I know you are still in a lot of pain, and I know you haven’t had a lot of normalcy over the past year and a half. Actually I know you probably don’t even remember what it’s like to live. My hope for this visit was to give you that and my biggest wish for you sweetie, is that you have many many more days like today, where you are able to live life happily and experience normalcy outside of those hospital walls, and feel the blessings of every moment with the people you love the most.” We were both on the verge of crying like babies at this point, right there at a table inside of the East Town Sip, but it didn’t matter because in that moment it was only Vicki and I. I wasn’t thinking about how much pain I was in or how frustrated I was that I had just spent far too many days away from my family in the hospital. I was no longer feeling sorry for myself. That was all it took. The universe aligned and brought me back, which was exactly what I needed at my lowest point since diagnosis. I was again reminded that even during the darkest of days, the sun is just around the corner. My reality hadn’t changed, and nor had my pain, but the amazing perspective that I have gained through my diagnosis and 17 months with cancer has again been restored thanks to one of the most special people in my life. Since that beautiful day a lot has happened. I did virtually tap out a bit to allow myself time to breathe and spend time with my family and friends but I am happy to report I have been back to my optimistic smiling self since that day.
To give you an real update, I will say that my nursing team was right in warning me. Chest tubes HURT… a lot! And the pain lasts LONG after the tube is actually removed. Especially if your chest tube has been placed behind your shoulder blade in your back. The pain is beginning to lesson, but I was warned that because of where it was placed, I could be looking at 5-6 weeks before the pain actually subsides so don’t be surprised if I tear up after a tiny sneeze or cough. After forcing Butterworth to release me last Tuesday, a lot has happened. I cannot tell you that I didn’t regret leaving the hospital where my pain was mostly controlled more then a few times, but I was glad to be home and even more happy that I got to spend time outside of the hospital with some pretty special people.
When I was released, I was told that I still had a small pneumothorax and that I also had inflation in both of my lungs that looked to be radiation pneumonitis, so I was released only after promising I would see a Pulmonologist at her office within 48 hours, a deal that I kept. I must say that although it’s frustrating that I keep having to add specialists to my ever-growing list, I am pretty sure I have just added one of the most caring, compassionate and determined physicians to my team. She was amazing and literally spent over two hours with us going over my perplexing case, as well as all of the tests I have been having. She also spent a lot of time, looking into my medical history and all that has happened to me in the past year and a half with cancer in an attempt to work through what may have caused the pneumothorax in the first place. The perplexing part is that according to her, it is VERY rare to see a patient my age, who has never smoked and did not have any trauma to the lungs, and had scans without glips on them, get a spontaneous pneumothorax. Laughingly I did tell her that anything “rare” is quite par for the course with me, but she really was quite determined to find a cause, which made us fall in love with her right away. In talking with her, she really hopes that the hole in my lung was not spontaneous because when this does happen spontaneously, it usually tends to reoccur again and again meaning, I would most likely have to go through this whole ordeal again. So she was digging really deep to find a cause for the hole that had formed. In going over everything the only thing that we could come up with is that I have passed out a handful of times over the past two months, and there was one time that I went down and my husband wasn’t close by to catch me. It’s hard to say how I fell when no was is around to see it, but she did say that being that I had chemo and radiation to that side of my chest the tissues have been weakened, so even if it’s a long shot, it is possible that this fall could have punctured a hole, and not bruised noticeably This is of course something we will probably never know the answer too. The good news is that the small hole that was left after my surgery looks to be healing, however she was quite worried about the inflammation that was showing up in my lungs and what could be causing it, and she was especially worried that while walking my oxygen levels dropped in the office and again perplexed her because it seems that there are or could be several reasons why I am feeling the way I am feeling. Her first thought was that there is one type of infection that could have caused a pneumothorax to occur as well as the inflammation and the drops in my oxygen levels, so she initially wanted to send me to the hospital to have a bronchial tube placed to know for sure, but she thought it may cause more harm then good to put my body through something else so soon my last procedure. Instead she sent us away with orders have an arterial blood gas testing which she warned is an in-patient blood draw that can only be done by accessing a main artery and it would be very painful…. I had the testing done Monday after a 5 hour infusion at Lemmon Holton. Let me start by saying that she was not kidding, it was VERY painful especially because they had to do it 4 times before reaching an artery. I am pretty much a pro in this department and can handle the pain without so much as a flinch, but my body wanted to complicate the testing a bit as it often does, because I started too, well passed out during the 3rd try. My guess is it was a mix of not feeling well after hours in the infusion center and having nothing to eat before going that day, but I will admit that thanks to that little episode I was feeling a lot worse after. My little episode earned me a longer stay at Butterworth and after returning to Lemmon Holton, I literally put two chairs together in the mediation room and curled up in a ball so I could just close my eyes for a while and I spent the entire evening on the couch. (A new low for me, but it was better then laying on the floor right?)
Here’s for the good news. The pain from the chest tube is finally starting to get better. I do still tear up a bit when sneezing or coughing, and apparently grab my chest without knowing it when it hurts during the day (at which case a friend of mine usually starts saying. “I pledge allegiance to the flag of the United States of America…) but I will take any improvements I can get at this point. I am also finally seeing some of the benefits of the procedure as my shortness of breath is lessening a little with each day. I was told the recovery for the chest tube could take 6 weeks because they had to place my tube in my back and interrupted a lot of nerves and muscles, so I am doing my best to be patient. Still on the good front, I got a call from the pulmonoligist and the results came back good. It looks as if my levels are starting to normalize so she says this should mean I do not have an infection in my lungs and I will continue to heal over these next few weeks. If it gets worse I was instructed to go immediately to the ER, but otherwise I will see her in a few weeks for another CT scan and eventually a full breathing test once I am fully healed. Now for the bummer… Come on you knew it was coming? I have been having a lot of stomach issues really since chemo ended but especially over the past few months. We thought it was initially still lasting effects from the chemo, but My oncologist discovered stones in my gallbladder on a recent scans so she is thinking this could also be a factor. I saw a surgeon yesterday and unfortunately he is recommending more surgery to now remove my gallbladder before it causes something a lot more serious. I will say that it sounds like pretty minor procedure, but as a doctor/friend who has performed one surgery on me pointed out today over coffee, “there is no “simple” anything with me.” Keep your Fingers crossed for me!
Beyond all this medial craziness, I am doing pretty well and really hoping things start to normalize for me soon. I have been spending a lot of time with my sweet girl and my awesome hubby and I am finally getting back to finalizing the fun aspects of my big passion BC project. I owe a big thank you to my amazing heart friend Vicki for knowing exactly when to swoon in and lift me up out of my lowest yet. Emotionally it was not a place I am used to being and it is not a place I wanted to be for very long. I am again reminded that so much of this journey of mine is very very meant to be right down to the people I have surrounding me. Thank you to all of you who have been sending cards, gifts, texts, messages, prayers my way over the past few weeks.