The big news, the good news, is that my book THE INCONVENIENT "C" is complete. You can purchase it directly from Amazon.com. click here to purchase. I plan to launch my book with a book signing at Relay Kickoff at the end of the month. My team is already getting organized and I'm thrilled to have new teammates joining Fell-Vallee! If you want to be a member of my team, sign-up is easy and the experience is amazing. I hope to see you all there! Join My Relay!
Other than that, I'll get right to the point, nothing has gone right. Period.
My skin healed quickly after completing radiation. There were no noticeable issues and I walked away from treatment feeling confident I was on the road to recovery and all would be well. I was concerned with the fact the chemotherapy didn't work. I spent months of grief, being poisoned and tortured, and it didn't do a damn thing. That was "great" news, wasn't it? Dr. D. assured me the Tamoxifen was going to maximize my protection for recurrence and that hormone therapy was my best (only) defense.
In the early part of October, I was accidentally injured by one of our horses. While leading her through a part of open fence, she jumped some standing water and came down on the back of my leg. Her hoof impacted at the back of my knee and ran down the entire length of my calf. The bruising was phenomenal and initially, I laughed about it, took pictures, showed off the pretty colors and acted as though nothing had happened. That was until my foot swelled twice it's size and long story short, I ended up with extensive blood clots throughout my lower leg. Although they were only superficial, the clotting was extensive and the potential for them to develop into DVT's was really high. With that, I ended up on coumadin and twice per day injections of Lovenox for the next month. My stomach looked like Harry was beating me it was so bruised and swollen.
Of course, this was a big problem. What was an even bigger problem, however, was that one of the major risks of Tamoxifen is blood clots. My biggest safe guard, my protection, likely contributed to my new life threatening condition. I stopped taking it immediately.
We needed to do something to protect me from recurrence. All the other meds are used only in post-menopausal women. Although the chemo likely made me post-menopausal, Dr. D. didn't trust it. I'm young enough, it's quite likely my ovaries would jump back to life. We wanted first and foremost to make sure the clots resolved, which they did. From there, I was given a shot of Lupron to ensure I was in a post-menopausal state. After a few weeks, I was to start taking Anastrozole. If everything seemed fine for a couple months, I would have my ovaries removed rather than getting a shot of Lupron every month. During all of this, I also noticed a tingling in my right hand, I didn't think much of it...more about that later.
The doctors and nurses warned me about the hot flashes I would get from the Lupron injection. The nurse who administered the shot said it would likely start in a couple weeks and could be pretty bad. Fortunately, I didn't have hot flashes. What I did have, however, was a complete mental breakdown! Within a couple weeks, my mood swings went wildly out of control, I was angry at everyone and everything, I would cry uncontrollably for no reason and would yell at people for the littlest things. The last straw was when I cried for sixteen hours straight and couldn't explain to Harry why I felt so sad. The next day, I told Nick what was going on. He hugged me and I envisioned beating his skull in with a set of bolt cutters. I didn't want him anywhere near me even though he was trying to provide me with some comfort. I realized at that point, I was in a dangerous state and needed some help. I called the doctor right away.
The tricky thing was deciding if I was reacting to the med itself or to my hormones that were being set wildly out of control by the therapy. Dr. D. didn't want to add any meds (antidepressants) since I was already getting so many things thrown at me. She felt it was a matter of getting my hormones settled out. Wanting to make sure it wasn't a medication issue, rather than getting another dose of Lupron, I was going to get Ganirilex. The Lupron is a shot in your ass. That's bad enough. The Ganirilex is a tablet inserted under the skin in your stomach through a 12 guage needle. Holy Moly! When the nurse tells you not to look, they mean it! Of course, she used Lidocaine prior to inserting the tablet, so it didn't hurt. It left a heck of a bruise. So far, I am tolerating the Ganirilex just fine. No more Lupron for me! I may go postal if I get another shot of that stuff.
Another bombshell was dropped on me while we were dealing with the bloodclots. Dr. D. recommended I enter a study. The study is for people who had less than expected response to neoadjuvant therapy. I had zero response, so I most certainly qualified. So, not only am I dealing with the effects of the hormones making me crazy, I'm back on low-dose chemotherapy. There's nothing like a daily dose of chemo with your morning coffee! Jeesh...I can't catch a break.
Over the past few weeks, I have been getting worsening neuropathy in my right hand. Initially, it started as tingling in my middle fingers. Then, it turned into numbness. It was worse at night and once the pain started, things began going severely downhill. My hand would feel horrendously hot and the seering pain would wake me from sleep. It got to the point where I would only get an hour or two of sleep at one time and would wake to my hand giving me terrible grief. Nothing I could do would alleviate the discomfort and I'd have to get out of bed and pace around before it would right itself again.
For the past few days, I resorted to taking Ativan to get to sleep. I would wake up in the middle of the night and take more. Finding it wasn't enough, I tried Vicodin. Unfortunately, that didn't help the pain and only made me feel gross. Dilaudid helped some, but didn't do enough to keep me comfortable through the night.
Finally, we decided to try Gabapentin and Dr. D. ordered an MRI. The earliest appointment I could get was for Friday. I did my very best to make it through to then, but, sadly, I failed. Monday night, before going to bed, I took triple the amount of prescribed Gabapentin, 1 mg Ativan and 4 mg of Dilaudid. I was desperate for sleep. I prayed this would be enough. By 1am, I was awake with my hand on fire, my middle finger feeling like it would explode off my hand and the underside of my arm covered with pins and needles. I went downstairs and took another 4 mg of Dilaudid. I was unable to get back to sleep and by the time morning rolled around, I was in tears, completely overwhelmed with exhaustion.
I called Maureen and explained how desperate I'd become for sleep and pain relief. I couldn't control my tears and sobbed on the phone as I explained what my night had been like. Poor Maureen. I could tell how much she wanted to make everything better and she felt so sorry for me. She instructed me to take more Gabapentin and to continue taking the Dilaudid, but on a regular schedule and try to stay ahead of the worsening pain symptoms. Dr. D. called to see if there was a chance of getting me in for the MRI sooner, but they were completely booked. "Go to the Emergency Department. I'll call and let them know you're coming in and that I want the MRI done immediately. With that, I left the barn and headed home to clean up. I left Liz alone to do chores. I felt terrible leaving her. It was bitter cold and she's exhausted and overworked herself. The plan was to celebrate New Year's Eve with my parents, but I wasn't sure what the ER would do to our plans.
My mind was working on overdrive and my anxiety got the better of me. I began thinking about all the worse case scenarios, the biggest one being that I had a mass pushing on a nerve somewhere in my brachial plexus. Unfortunately, this is a very real possibility and I couldn't shake free from it. I was exhausted. I was in pain. I was very, very afraid.
I got to the ER and checked in. I wasn't in the waiting room very long before they called me in and got me set up in a room. Harry was in Lebanon and was quickly trying to finish up his work so he could be with me at the hospital. It was now around noon and he hoped to be there by 3:00 or so. Amazingly, the dosages Maureen told me to take were doing the trick. I laid down on the bed and finally felt comfortable and relaxed. Thank goodness! I sighed with relief.
I remained comfortable in the room for a bit and a PA came in to examine me. We talked about my history and symptoms. He did a bunch of physical tests and said I was neurologically intact. He was more concerned with my neck, so ordered some neck films. It was around fifteen minutes and a lady from radiology wheeled me down the hall and shot the pictures. No big deal. Back to the room I went. Some time later, he came back in and said the neck looked fine so we would do the MRI. He let me know this could take a very long time...like hours...to get the MRI done. It was now around 3:00, so I figured, oh well, New Year's Eve is over for us. I could expect nothing less from this horrendous year. Let's finish it off, sitting in a bed in the emergency room. Sigh.
Harry arrived and I gave him all the updates. I called my Dad and explained to him what was going on and that we would not be able to come over to celebrate the New Year. It broke my heart to tell him, expecially considering the ice storm had kept the family apart over Christmas Eve and my Mom was extremely sad about that. Now this. She would be devastated. I couldn't help it, it was out of my control.
A little before 5:00, a nurse (the first one I've seen since coming to the ER) came into the room and said, "MRI is coming to get you in about 15 minutes and they need an i.v." Excellent! Maybe we'll get to have dinner and enjoy the night after all! She put in the saline lock and away we went. The MRI tech filled me in on what would happen and I asked about contrast. "We don't do this with contrast" was his answer. I asked why they placed the i.v. and his answer was simply "I don't know, that was goofy." hmmmm....? Regardless, I found the scan to be very relaxing and dozed on and off during the procedure. It took about a half hour and then I was brought back to Harry.
So, here we are, all the tests that needed doing were complete and I'd been at the hospital for about 5 1/2 hours. I spent very little time in the waiting room which was most excellent considering the horror stories I've heard about the wait in there. However, time began to pass. I dozed a bit. Harry and I chatted. I grew more and more frustrated thinking it was taking a long time because there was something wrong and they were consulting. So much time went by the meds I'd taken earlier were wearing off and my hand began to burn and my middle fingers were numb. By 7:00, I was very frustrated. I decided I would call the nurse and ask if I could at least get my scheduled dose of Gabapentin since that seemed to work so well earlier.
I pushed the nurse call bell. I haven't been in a hospital bed since I had surgery back in June, but I definitely remember that if I pushed the call bell, a nurse would come in my room and see what I needed. Several minutes went by and suddenly there was a beep from the bed control where the call button was located (along with the remote to the television). A scratchy disembodied voice came from within "what do you need?" Was this for real? Am I at McDonald's Drive Thru? I spoke into the remote and said "hi, my hand is beginning to bother me and I was wondering if I could have a dose of Gabapentin since it was scheduled and was working well earlier." The scratchy voice's reply was "I don't know. I'll pass it on to your provider." click.
Ummm? What? I had not seen or heard from a human for almost 2 hours at this point. Now, the very reason we were here was bothering me. The worst part was Maureen had found the perfect dose of meds and I knew exactly what I needed for comfort. My own meds were at home, so there was little I could do except sit there and fret about the pain returning in my hand. Nothing.
A tech came in the room some time later and did vitals. I asked her about the Gabapentin and if there was a chance I could get a dose. She said she didn't know anything about the drugs but would try to find someone. Shortly thereafter, the PA came in and said they were just now reading the MRI. I explained to him my pain was returning. He said he would order the Gabapentin, but that it would take some time since it needed to come down from the pharmacy. Once again, we settled down for the waiting game. My hand hurt, my back was sore from sitting all day on the stretcher and I was hungry considering I had not eaten since breakfast and it was now close to 8:00. New Year's Eve festivities were gone. I went from frustrated and angry to feeling very sad.
Finally, the PA returned to announce the MRI was normal. Good news, but really frustrating at the same time. Why on earth am I in so much neuropathic pain? Knowing I was already going to see Dr. D. on Friday, he told me to continue with the med regimen since it was working. He also recommended I talk to oncology about a neurology consult and have an EMG done. He said he would wait a couple more weeks otherwise the results might have some false negatives due to timing. He had the discharge papers all set. I pointed at my i.v. that was never used and said, "can I DC this?" He said "sure" and handed me some gauze. I happily removed the catheter myself with Harry going "oh for pete's sake, let him do it!" The PA and I both laughed at him. Harry's a little squeamish when it comes to needles and such. As he walked out, he asked if I'd gotten the med he'd ordered and I replied with a negative.
So, here we were, waiting for discharge paperwork that was already signed. Someone from registration came in and verified my information (mind you, someone from registration had already done that hours prior). I asked her if I was all set to leave. She gave me a startled look and said "no, you haven't seen a provider yet." I explained I'd been there all day, all the tests were done and the doc already gave me discharge instructions. She said, "no, your color tells me you still have to be seen" and walked out. Bigger sigh.
Still sitting in the room. My hand feeling worse and worse as we wait, another hour goes by. I push the "call bell" again. After a few minutes the very impersonal voice comes over the speaker "what do you need?" I ask if I am all set to leave and she promptly says "well, no, your discharge papers aren't here." I respond with the fact the doc said he signed them well over an hour ago. "You need to wait." I said to her "I'm really uncomfortable and would like to go home and take the meds I need since I don't seem to be getting them here as ordered." She quickly snapped at me that she didn't know what was going on and would tell the PA to get the paperwork organized. Harry was furious. He looked at me and said, "you know what? They're waiting for the god damned Gabapentin to show up before they let you go."
Keep in mind, it's now well after 9:00 (the MRI was done and I was back in the room around 5:40). Harry marched out to the desk and said "Listen, we have discharge instructions. We have the meds at home. I'm taking my wife home right now so she can take the medication she needs to get comfortable. We're leaving!" The woman behind the desk, the fabulous disembodied voice snapped "well, I thought you wanted your medication first! Her discharge is right here."
Harry returned to the room raging. A nurse promptly came in with the discharge paperwork and went over the discharge instructions. She started to open the Gabapentin she had in her hand and I said "forget about the meds. I'll take my own at home. I've been waiting for that for over 2 hours and just want to leave right now." Her eyes got huge and she said "you've been waiting for this for that long?" I didn't know how to respond. I simply said "I've been here since noon and I'm ready to shoot myself in the face I'm so tired and frustrated. Just get me out of here." She told us to be careful driving home and mentioned "it's really crazy out there, people and blue lights are everywhere. I'm glad it's so quiet in here tonight." I wanted to burst into tears when she said that.
I would be first in line to back up a Nurse. I understand how difficult their job is. I realize they're overworked and underpaid. I realize how emotionally challenging the profession is. I was there once, not as a Nurse, but as a Respiratory Therapist. I know first hand what it's like to work in the hospital, in every department, from the ER to the floors, to the ICU's and to Labor and Delivery. I get it. I understand. However, I now have the opportunity to look at the healthcare system from a patient's perspective. In the ER, on New Year's Eve, I was crushed. I was in the department for HOURS. I went there terrified my cancer was returning. Not once, did a nurse check on me or ask me how I was feeling. Not once, did a nurse ask me if I was cold. Not once, was I offered a glass of water. The only nurse that touched me was the one who put the unecessary i.v. in my arm. She didn't even tell me her name. The only nurse who talked to me was the one who told me the ER was quiet and to tell me I could go home.
I don't know why I feel so hurt by my experience in the emergency room. It wasn't intentional. It wasn't personal. Maybe that's why I'm so sad and disappointed. I feel like nobody cared about me as a person. I was ignored. I wonder how many other patients felt ignored last night. The craziest thing? As we got home, Harry's phone rang. It was the nurse that discharged me. "Does Jamie still have an i.v. in her arm?" Harry's response, "no, she yanked it herself quite a while ago."
My token "Smile!" is gone. Now, I revel in anger. Things need to change. How can I make it happen?
Join my Relay Team!
Buy my book, The Inconvenient "C"