This is so odd. I wish I could understand how my mind works. I'm pretty good at figuring out how other people tick, but me? not so much. I'm embarrassed about myself right now. It embarrasses me that I feel so weak and vulnerable. Never, not once in my life, can I remember a time when I felt so overwhelmed and discouraged. I am a breast cancer survivor for crying out loud and what I am dealing with right now is worse than anything I endured during treatment. It makes absolutely no sense that I should be ashamed of my "weakness," but I can't help it. I'm supposed to be able to shake it off, keep calm and carry on, right? Instead, I find myself weeping. I curl up in a little ball and try to rock myself to sleep, but nothing helps. Sleep won't come, only pain.
Yesterday morning, I hit a wall. Obviously, I'd rather be at the barn doing chores. I'm comfortable when I'm working. However, the lack of sleep from the nighttime pain got the best of me. I went downstairs, took my handful of meds and drank a cup of coffee. The smell and taste of the coffee was like nectar. I had a small breakfast and then drank another cup. I was still trying to shake off the neuropathy (it generally takes a couple hours to go away completely) and then realized I was asleep in my chair. I quickly drank the rest of my cup and got up for a third (no, this is not something I ever do, but I was desperate). As I was standing there waiting for the Keurig to do it's thing, I began to lose consciousness. I was swaying and almost went down on the floor, but made it to a chair. My arm was throbbing, my head was swimming, my brain was screaming "what the hell is wrong with me!!!!" I crawled to the bathroom and promptly threw up. I haven't vomited since I had morning sickness with Liz.
Poor Harry was so frightened for me. Before he knew what was happening, Liz went to him and said, you have to force Mom to stay home today. She can't come to the barn. She's completely exhausted. That in and of itself, terrified him. He crept into the bathroom to find me still huddled over the toilet whimpering. "Let me take you to bed. You can't go to the barn today." All I said was "I know. I can't do it. I can't go to the barn today."
I never say "I can't." That day I allowed myself to say "I can't." I need help. I'm desperate for help. I hope the doctors all understand just how desperate I am. I'm sure they do, but so far, they can find nothing wrong.
Most of my pain comes at night. It makes me so sad to know "my Louise" is in an even worse state than me. My friend has trigeminal neuralgia. Although I knew she was in pain, I had no idea what kind of pain she was in. Now that I know what this is like, I can't imagine the torture she's enduring. Like me, she's a cancer survivor. Like me, she's too young for this crap. Is this the life we have to look forward to? I hope the answer is a huge "NO!"
When I was first diagnosed with cancer, my ability to sleep was almost nonexistent. There is nothing worse than insomnia. Being exhausted all the time makes even the littlest of things seem horrendous. I understood I was having difficulty sleeping because I had cancer demons in my chest and they tickled my brain every time my body would consider lulling into peaceful sleep. Fortunately, I found the right amount of Ativan and eventually discovered a routine with me new normal. I was eventually able to sleep again and things continued on.
This is something new. I can't sleep because of pain. I'm afraid to crawl into bed because that's when the pain creeps in. Neuropathic pain is difficult to understand, but once you experience it, you wouldn't wish it on anyone. My hand has become a source of misery. The most ominous part of this whole ordeal is I can work normally and there is no pain. It doesn't hurt to pick up fifty pound bags of grain. It doesn't hurt to throw hay bales into the paddocks. It doesn't hurt to slip on the ice and fall down. My days are relatively normal except I'm so tired I feel confused and dreamlike.
At this point, we cannot find the source of my pain. It worsens each night. Last night, I went to bed with 1.5mg Ativan and 300 mg of Gabapentin. By midnight, I was in agony. I went downstairs and took another 300 mg of Gabapentin and 4 mg of Dilaudid. I tried desperately to sleep. I'd finally doze off and then be forced awake. Through the night I alternated the Gabapentin and Dilaudid each hour until morning finally rolled around and I had to go to the barn. Once I started working, I was fine again. Sadly, the drugs had me so gorked by this stage, Harry had to bring me to the barn because I was afraid to drive.
It would be ironic if this is nothing more than carpal tunnel syndrome. With my luck, it's a lesion on my spine. This isn't pleasant to think about, but I'm very calm and prepared for this news. When I spoke with the oncologist on call about my previous night and to get a better drug plan, I asked what the MRI read. I had one Saturday of my C-spine. She told me it wasn't read yet and it would be best to speak with the nurse on Monday. I'm fairly certain the radiologist report is in the computer. They read these daily, it's their job. It makes me believe there's bad news and she doesn't want to be the bearer of bad tidings. Wouldn't that be a kick in the you-know-what? Beat breast cancer but end up with secondary spinal cancer. Monday can't come soon enough. Hopefully, the concoction of high dose Gabapentin and some narcotics will knock me out for the night. I sure am angry. This isn't fair. Nothing is fair. I want to ride Junior.
As I sit here pondering my navel, I want to think about what brings me true joy. The funny thing is, I realize it's the really simple things. When I worked at the hospital, a colleague clued me into Russell Stover Dutch Mint Chocolate. I would treat myself now and then to these luscious candy bars from the hospital gift store. Once I left, I couldn't find them anywhere. Last week, maybe someone knew I needed something special, I found them at Shaw's. I found a box of bite size Russell Stover Dutch Mint Chocolates and I've relished each and every one of these little jewels.
I love Pandora jewelry. Harry, my Mom, Harry's mother, all know how much I like Pandora. I have several bracelets and a necklace and adore each and every charm I'm given. I mix and match my charms and bracelets and they make me happy. It may seem silly, but not to me. I like them. I also am falling in love with Alex and Ani. I always wanted the bracelets and suddenly, my friends and family are giving them to me as gifts. They fit nicely with my Pandora bracelets and the collection is pretty when all combined. Thank-you for noticing!
Some people consider themselves dog people, others are cat people. I'm both. I love my pets. I love my cats and dogs, not one more or less than the other. They make me laugh, they keep me warm, they bring me comfort, they give me something to do. I love the way Phoebe looks at me as though I'm the greatest thing on earth. I love how smart Elenore can be. I laugh out loud at the fire kitties and hold the 3-legged one tight. They're all special.
There's something that brings me warmth in my seemingly frigid, trying life. Junior can relax me when nothing else can. If I hold my hand flat, palm pointed forward, his eyes will lock on mine and he will ever so softly lick my hand. I can breathe again. Everything becomes soft. Everything is better.
Many years ago, Harry put his arms around me and suddenly I felt very, very small. It felt good. I no longer needed to be the strong person everyone depended on. I could simply enjoy the safety of his embrace. That has never changed. Today, when I stood in the kitchen, worrying about tomorrow, I wrapped my arms around myself and then he wrapped himself around me; suddenly, I felt very small, I felt safe. As long as I feel warmth, safety and joy, what else matters?
Have I ever told you cancer is inconvenient? Well, if for some reason you were wondering...it is. You never plan on getting cancer and if you do you are forced to reorganize your life around it. It's inconvenient and it sucks. Fortunately, I never thought "if I don't do this I'm going to die" or "cancer's going to kill me if I'm not careful." I never thought of it on those terms. What I did think about was "how am I going to manage to get everything done and still make it to radiation?" "How am I going to make my right boob look the same as my left in this shirt?" "Why do I have to have blood tests, again?" or, a big one, "will I ever be able to touch my right breast again?"
Isn't that a crazy thought? When I started having all these issues with my right arm, I went to see the lymphodemiologist. Her physical therapist immediately began working with me, showing me exercises I should do to help with the nerve pain and self massage I should do in case there was swelling. When she told me I needed to start massaging over the scar in my breast, I was terrified. I explained to her I haven't been able to touch anything but my drain scar on that side of my body. I can't even lie on my right side! "Well," she said, "it's time for you to start touching yourself. You need to massage it to soften things up and maybe you'll start to get sensation back. You've already got quite a bit, so by rubbing it, you may generate more!"
All it does is make me nauseous. Imagine having to set aside part of your day to massage your implant and fight back nausea at the same time. Wow. Inconvenient. I'm to the point now where I can do the massage as required, but I can't watch. I can't look at myself while I do it. I can't explain why. I'm not ashamed of the way I look by any means, but I know it's not my body. It's hard to explain the feeling you have when you touch your breast and expect a particular sensation, but then feel nothing. There is no sensation whatsoever over my breast and it's the weirdest most disconcerting sensation you can imagine. Fortunately, I have all my feeling in my armpit and arm and there's quite a lot of feeling above and below my breast. That's lots more feeling than many women have after a modified radical mastectomy. There's a possibility I'll get more feeling over the entire area if I do the physical therapy and work on it. Regardless, it's so weird.
Cancer continues to be inconvenient. It's never over. Amy taught me that. I called her bawling my eyes out the day I learned I was going back on chemo. She very bluntly stated "it's never over, we're never done. Have you cried for ten minutes yet?" "yes" I said. "Then stop. You're allowed ten minutes a day and that's it. After that, it's time to get back to work."
That's where I'm at, constantly fighting the battle in my brain. At the moment, I'm free from disease. In my brain, it's coming back. My guard is up and prepared for whatever The Inconvenient "C" has in store. Do all survivors feel the way I do? I wonder? It's exhausting.
Since my last day of treatment, I've tried desperately to leave everything behind me, regroup and continue on with my life. I'm sure most people assumed my silence was due to my new found health and that I was living my life to the fullest after waging my battle with breast cancer. I wish I could tell you that was true. Unfortunately, cancer, for me anyway, is a persistent little bugger.
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?
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