Surgery itself has never caused me any anxiety for some reason, however I was a little nervous going into this last surgery. Not nervous to be put under again or even to add more surgical trauma to my ever growing list, but I was nervous to wake up and have to go through the painful recovery that I knew I would be facing being because I had almost the exact surgery a few months back. I knew that I would struggle to even hold my own weight in the days immediately following my surgery, I knew it would take months to heal the painful bruising and incision sites and that I wouldn’t be able to hold or really play with Corryn, and most of all I knew that it would again set my body back in the overall cancer recovery department.
Like usual, I didn’t sleep a wink the night before surgery because my mind had gone into busy nesting mom-mode and was very much preparing to be physically down for a awhile, but as usual meeting my amazing photographer/friend Sam at the hospital, very much distracted me and made those surgical prep hours fly by. In fact, there were a few moments where I had actually even forgotten why I was at the hospital all together which is pretty amazing. We also had my mom with us as well as our new friend Brooke, who was there capturing video for a project I have in the works, so I could even go as far as saying that this time, was “fun”. Before I knew it I was removing my healing and protection jade necklace, and they were connecting all the tubes and wires and wheeling me off to surgery. Before going into surgery, my amazing plastic surgeon had laid out her plan for me, which included cutting out some irritated scar tissue that had formed around my chemotherapy port site incision as well as injecting some steroids into the site to keep the irritation from returning, the removal of my left tissue expander, the placement of my left breast implant, phase one of my left nipple reconstruction, fat and tissue grafting from my thighs again and placement into both breasts, as well as immediate stretching of my right breast skin, and placement of my right implant; if possible. But, we had also talked about placing a tissue expander on the right side if all of this wasn’t possible once she got into surgery. The list was long and again meant a pretty big recover, but I knew it would be great to make all of this progress in a big combined surgery.
I am told the surgery took a few hours as usual, and I spent a good amount of time in recovery. When I finally came too, I remember being in some pain, but I also remember being VERY surprised to look down at my chest and see that Dr. Timek was able to accomplish all that she set out to accomplish during surgery, but most of all I remember being very surprised to again see two breasts on my chest for the first time in over a year. I also woke up feeling much weaker overall as expected and I did struggle to stand on my own, in addition to the usual issue with the anesthesia putting my bladder to sleep so I wasn’t able to empty my bladder on my own. The next few hours would be my biggest struggle as the nurses in post-op care didn’t really know and understand my history or the challenges that I have faced with each surgery and I wasn’t exactly in a place to explain my situation to them. So there was some confusion and even some frustrating and difficult moments but later that evening, they did end up sending me over to post-surgery admitting care. Once I was admitted, I received amazing care as usual, and feel I was blessed with some pretty great nurses, even two that I have had in the past. It’s all really a blur to me, but in all I was in the hospital 3 days.
In returning home, I struggled physically as I knew I would, and I even had some trying emotional moments which before cancer would have been VERY unlike me. Moments where I just felt very fed-up with the fact that I was still dealing with Cancer surgery and pain, when others seemed to think or assume I was doing so well, and more emotion came from the fact, that I again had to start over at ground zero in the pain and healing department. I will be honest both grafting surgeries have been far more painful and have needed twice the time to recover then my radical bilateral mastectomy. My husband was again doing everything for me, which included things that you don’t think you’re going to need your spouse to help you with for at least 50 years. He was helping me to shower, to get into my post-surgical compression garments on, to get dressed, and even to step up the two stairs into our home, and to walk around the house. Being cared for in this way is vary hard for anyone with a somewhat healthy lifestyle who has been thrown into a treatment/recovery year like this, however it all hit me pretty hard the day after returning home after surgery. As I tried to lift my own legs into bed, the emotion of everything just hit me and before I knew it the tears were streaming down my face. To be honest, I really don’t even know why this hit me so hard in that moment, after all, I did know this pain was coming and I did know that I was again going to have to depend on my husband to do everything for me for a while, but in that moment I didn’t have any control over my emotions so the fact that I again couldn’t lift my own legs into bed on my own, sent me into an emotional tail spin that lasted a good few days. To my surprise Jordan picked up the camera and started shooting. As much as my instinct was to tell him to get the camera out of my face, I realized this is exactly what the “rational, wanting to share Tammy” wanted him to capture. In the weeks before we talked about all that has happened this year, and how thankful that we are that we documented as much as we did, but I also mentioned that looking back now, and realizing how open I have become, there are also many things that I didn’t want captured at the time, but I now wish I had documented. So, I remembered saying to Jordan… “I want you to capture everything, but I especially want you to capture the moments that are the hardest for me, because it is these movements that have the power to really “ help” someone in my shoes. That’s when I realized that Jordan was doing exactly what I wanted him to do. The emotional phase of my recovery lasted a few days, and although I was in a lot of pain, I quickly found my positive side again, but not without struggles.
Before my surgery I was already seeing an occupational therapist to correct a very pesky case of post-mastectomy cording that has restricted the movement in my left arm, but it was suggested that I enter the Spectrum Health Star Rehabilitation Program after surgery, which is a cancer rehabilitation program that helps with the lingering side effects to cancer treatments and surgeries including generalized post treatment weakness, fatigue, and pain, among many other things, and it was also suggested I see a therapist specializing in medical-induced menopause (which I will explain in a later post) as well. Seeing one PT is a full schedule so trying to see 3 for different issues, was a bit complicated, but I had set up all my appointments for 4 weeks post surgery in an attempt to get some of this done and off my plate before I find a position and head back to work full-time. However during my first appointment back with my OT, she pulled the “c” card on me. I was visibly a wreck and she made it quite clear that her first concern was not for my post surgical cording, but for my over all health and wellness. She could tell that I had lost more weight, she could see that I was still struggling with post surgical pain and weakness in my legs and she feared I was actually losing muscle mass, and she was very worried that I was just pushing myself to do too much, far too soon. She brought up the things that I was thinking but didn’t want to say with what I should do going forward and even mentioned a few things, that I really am not ready to consider yet. In her words, “I know you don’t want to hear this, and I know you want to do all of this as quickly as possible, but before you can work on all of these issues and start the process of regaining some of the aspects of you, that you that you have lost, you have to first take care of you now.” She then said “You may fool a lot of people with that big smile, but I can see right through it and I know you are in a bad place”. In that moment I hated that my “game face” wasn’t quite as effective as I like it to be, but I also loved that Amy felt close enough to me to be brutally honest and real at the same time, and I felt blessed to have her on my team. She recommended that I cancel all PT and OT appointments except for the appointments with the Star program and that I take the time to actually let my body rest and heal and try to get back my everyday mobility and strength, and check back with her in 4-6 weeks..
So over the past few weeks I have been slacking a bit on the posting, or in the progress department on my projects, however I have been giving my body the time that is needed to heal. Because of the POTS symptoms I have struggled a lot with passing out or at least feeling that I was going to do so, so I have again been spending my afternoons in the infusion chair 3 times a week. In one of my first appointments back in the infusion center, I was placed with a new infusion nurse because the infusion center I usually go to was full that day, but to my surprise one of the nurses I saw quite frequently, was also workings in that clinic. She was the very first nurse that I saw at the infusion center and was also the nurse who rushed me under the street to the ER after my infusion pretty early on in my treatment because of pain in my chest/tissue expander. It was great to see a familiar face that day, but her introduction to my new nurse for the day, really put my situation in perspective for me. She walked up and said to the nurse putting the IV in my arm: “You now that one patient you have over your career who has had everything that ever could go wrong; go wrong? This is her. In all of my 18 years in oncology care, I don’t think I have ever had another patient with breast cancer, with a harder treatment and surgical year. Hearing this from the “bad ass” nurse in the infusion center affected me, and really put things into perspective for me, but most of all it made me focus less on the struggles I am now having, but more on the progress I have made from where I was last year at this time. The good news is, I have made progress, and I am moving around much better. Last weekend seemed to be a turning point for me physically. Although I am still struggling with the daily nausea, shortness of breath, fatigue, and of course the dizziness and faintness, I am finally able to move around with little assistance from my husband. I really only struggle with stairs or walking on a incline with the post surgical pain in my legs from the grafting sites, and after meeting with a dietician I have actually gained a few pounds over the past week, which is making everyone happy, but the bummer came in meeting with my cardiologist last week. He was kind of at a loss with where I am at physically, and in a way left me with more questions then answers. He, like other specialists on my medical team, said it’s really hard to know what the root of my symptoms are at this point, because so many things have happened to my body over the past year, that could be causing all of these symptoms. He did say that POTS usually flares up after trauma or stress to the body which would make perfect sense in this case. His thought is that my POTS, which is basically a dysfunction in my heart that causes episodes of tachycardia or extreme increased heart rate upon moving from a laying to a sitting position, or upon raising from a sitting to a standing position, thus causing me to pass out or feel like I am going to, has flared up, because of the extreme trauma that 14 months of cancer treatments and surgeries have put my body through, in addition to other possible anatomical dysfunctions that cause my body not to absorb and maintain nutrients and hydration. The good news is that my cardiologist thinks that I will be able to get this under control over time as my body heals, because I have been able to do so in the past, however the bad news is that he really has no idea how long this process could take because of how much trauma my body has actually been through and because of all of the damage that the treatment has caused. Like other members of my medical team he mentioned that it could take a few years before I really start feeling better and before we are able to get this condition under control again without medications and/or infusions which was a little frustrating. He mentioned that there are two new medications that he would like to try to treat me with however, he fears that adding medications to my list right now could cause more harm then good, so his advice was to wait on that, to continue with my infusions 3 times a week or more if needed, and to see a gastro-neurologist in the mean time because of the almost constant post-surgical nausea. After meeting with him, one of my nurses shared an article with me about how chemo treatments can affect someone with POTS. The article mentioned that a POTS flare up brought on by chemotherapy could result in extreme fatigue, nausea, weight loss, migraines, trouble sleeping, shortness of breath, dizziness, and of course passing out or loss of consciousness which is literally my full list of symptoms at this time. Although there were scary and hopeless aspects of the article in suggesting that in some cases this does not get better, there were also aspects that made sense of a lot of lingering post-treatment symptoms that I couldn’t explain. The good news is, I feel pretty good after getting my infusions, so for now I will continue with that, and remain thankful that I at least love my nurses, and I am treated at a very beautiful facility.
I have to be honest, this surgery set me back much further then I think even I was prepared for and now seems to again be a very daunting recovery process, however I am making small progress everyday. I will say that in some ways I am doing well, and I will of course keep smiling because that is who I am, but I will also admit that there is still a lot of struggle hidden behind my giant smile, as my OT so nicely pointed out. At this point, I am doing my best to take time for me, to listen to my body. I am embracing my good days and getting as much done during the better times, and I am doing my best to listen to what my body needs on the bad days, and really try to let my body heal in the way it needs too. Most of all, I am staying positive that this will all get better in time and trying my best to focus on the fact that even small progress, is good progress. I feel like the hardest part in my mind is that I had prepared myself mentally for one bad year, one year full of gruesome treatments, and painful surgeries, but I also had it in my mind that after I got through this one very hard year, I would find my old self waiting on the other side. The truth is, that person that I barely remember, is gone which in some ways is a good thing. The honest truth, is that cancer does not mean one bad year of treatments and surgeries… not for those of us who were diagnosed anyway. Cancer is not something you conquer and walk away from, it is something you take with you… something you live with for the rest of your life. Despite the fact that you will most likely look healthy and vibrant on the outside again, you are more often times then not, usually hiding a lot of post cancer pain, struggle, fear, and even lasting long-term treatment side effects behind the new healthy glow that follows chemo and radiation treatments. Cancer forever changes your life in good, even amazing ways, but cancer is also something that brings a lot of pain and suffering as well, and changes your life in negative ways. I think it is important to realize, accept, and move forward with an understanding of all that cancer has taken from you, but also to allow yourself the ability to see and appreciate all the positives that come from a scary situation as well. From every piece that was taken, have gained as well, it’s just hard to see that on some days. As always I am doing my best to keep my spirits and my optimism high, and most of all, I am doing my best to keep my eyes focused my recovery. But I am also allowing myself this time to be frustrated with my progress, to be let down with how much I am still facing, and to just plain have have a moment. Thankfully I have some pretty awesome things in the works that are serving as the perfect distraction right now, including a few little independent BC projects, as well as, a few other pretty amazing things that have come from my mission to share.
Look for updates over the next few weeks.
#MyPersonalPinkTime #NotJustABadYear #Cancer sucks