Ah, the bliss of chemo week. Imagine if you will being curled up with a warm blanket and hot cup of tea passing the hours dozing the day away in your pajamas or favorite yoga pants (where have the…
Source: The Apple Cart
Ah, the bliss of chemo week. Imagine if you will being curled up with a warm blanket and hot cup of tea passing the hours dozing the day away in your pajamas or favorite yoga pants (where have the…
Source: The Apple Cart
Ah, the bliss of chemo week. Imagine if you will being curled up with a warm blanket and hot cup of tea passing the hours dozing the day away in your pajamas or favorite yoga pants (where have these been all my life?). You wake occasionally to indulge in stimulating daytime T.V. talk shows and soap operas. There are no expectations of you this week. Chores are left undone without guilt or judgement from family. Eating consists of only food that comforts. This is about as good as it gets! WHOAAAA! Lets try this again.
Oh, the hell of chemo week. Imagine if you will passing the long hours in a drug induced fog, barely able to lift yourself from the chair to get more fluids from the kitchen to combat dehydration. The hours seem endless as you don’t have the focus to immerse in any worthwhile intellectual or artistic activity. You lay flat on your back gazing upward at a stark white ceiling only to discover a really large cob web in the corner of the room. Guilt sets in for the chores being left undone. This pushes you to look around you, really look around you. Oh jeez, this place is a mess. You are uncertain if the tummy rumblings you feel are the onset of nausea or hunger or, more likely, both. This is tricky territory. Maybe more meds and a coke will feel good. No, no, something with more nutritional value is called for like yogurt or applesauce. yum. You again count the day of the chemo cycle calculating how many more days like today before you start coming around.
I’m running on the beach and I mean for miles! The day is perfect and I am strong. I take a trail off the beach through woods and come upon a waterfall that I ride down, down, down into a calm pool of crystal blue water. Now I am swimming effortlessly. I emerge from the pool at my office (dry and perfectly coiffed) where I am walking a corridor in my best suit, walking as tall as my 5’1″ frame will allow, full of confidence. I have a smile on my face for everyone that passes. I am competent, independent and respected. I am loving this. WHOAAA!!!! It’s just another dream eerily similar to previous ones. I wish to go back to sleep and pick up the dream again, but no such luck. I am, in my anti-nausea and anti-anxiety drugged brain, dreaming of “the me that was” before cancer barged into my life and totally upset the Apple Cart.
“Why was my apple cart upset?” is a question I often ask God. I’d like to believe I now have some purpose to fulfill as a result, but sometimes I think it’s simply punishment. Maybe the answer is both. Maybe I was just too arrogant, what with my blessed life that I didn’t always appreciate… my career, family, friends, health, fitness and God-given capabilities. I needed to be taken down a peg or two. CHECK. I needed to rearrange my priorities and develop more compassion for others. I needed to look at my family and friends anew and let love guide me. CHECK. But is that all? Is there more for me to do? I am becoming comfortable believing that this is enough. I live in a small world. I am not extroverted by any stretch of the imagination and I am not comfortable reaching beyond the borders of my small world. Publishing these posts absolutely terrify me. I’d like to positively impact those that reside in my small world, my loving and supportive family and friends and hope that is enough purpose here on earth.
I’ve had some good days in the last few months, starting to get out and about and even play some tennis! It was not a winning season, but I didn’t expect it to be. It was just fun to play. I certainly felt how far my fitness had slipped. My reaction time is a little slow, too. But I believe it will come back. But the last couple of weeks have been mostly good. But I get so frustrated at the ups and downs.
I had a UTI a couple of weeks ago, the lab work however came back as negative for any infection. So I rolled along that week while the doctor pondered what could be causing my symptoms and I kept getting worse. Finally I called him and headed to the Midtown ER. Bob and I headed downtown on a beautiful Sunday afternoon and ran into complete grid lock in town as all roads around hospital were closed for the annual Atlanta Pride parade! As we got a couple of blocks from the hospital at one point we considered dropping me off on the corner to walk to ER. I could’ve joined the parade, or more appropriately, the homeless that hang out around the hospital. (Thanks for that visual Patti!). The way I looked, I would’ve fit in better with that group. We circled for an hour before a road was opened that allowed us into the hospital. So after 2 hours in the car with a raging UTI (ladies, you understand), I went into front door of ER, made a bee line for restroom only to see the ladies room closed/out of order. I’m in a full panic now, I bolt into the men’s room for relief, but it was too late. (My apologies to housekeeping). So now on top of being in pain, I’m humiliated. I now officially look like a homeless person that walked in off the street. Anyway, 10 HOURS LATER, we head home with antibiotics for UTI after all. About 11:00 p.m. the ER doctor decided she wanted to do a CT scan suspecting intestinal blockage from the X-ray. Oh no….not doing that. I’ll let you know if I’m blocked and this isn’t one of those times, so home we went.
It’s a week later, UTI is cleared up but I am managing a blockage that started Thursday night. I’m sticking with clear liquids and some full liquid, allowing fistula to do its work as a pressure relief valve. I’ve been kind of miserable the last couple of weeks, I must say. The chemo pill side effects are not even worth noting in light of everything else. It is worth noting, though, that my tumor marker continues to rise on these pills, so that is worrisome.
This blockage seemed a little more severe than a couple I managed before, so has me a little scared. I’m better today, but I don’t yet feel safe. Every time one of these happens, I can’t help but wonder if this is the one that can’t be resolved and I feel my time being very small again. Just as I get comfortable and at some peace, something changes that reminds me that I can’t really exhale. I’m told that I’m very strong. Tenacious might be a better description. I just hang on really tight. I confess that I often need help to keep my strength up. Of course, Bob is my first source of strength, even with his own fears. Pain management is important, pain is the enemy. Another are anti-depressant and, as needed, anti-anxiety. I take that when I can’t get morbid thoughts out of my head, and it helps. So I’m not super human strong, I just don’t want to leave yet and we all need help sometimes.
I’m often in awe of all that God has brought me through. I know I haven’t done this alone. Several years ago, early in my diagnosis and treatment, I learned a valuable lesson, I mean really integrated the lesson into my mind and heart. I was driving to work one spring morning and was passing by a park. As I inched along in traffic I took in all the people out jogging, walking, playing tennis and stuff. “Don’t these people work?” I wondered with envy. I honed in on one person in particular. A woman about my age walking her dog and I thought “That must be nice, to be healthy and have time to walk your dog in the park on a weekday.” Come on, we’ve all had these thoughts as we trudge through the work-day. But I was struck with the thought that no matter what it may look like, most people carry some burden… financial, relationships, grief, health and any other number of problems. Instead of being jealous of this woman, I wondered what her burden was. Please understand that it did not comfort me that this woman may have problems of her own but it erased all jealousy I may have felt. I realized that from the outside I look like my world is my oyster. I put myself in her shoes and felt empathy for another human. “You go girl.. walk on this spring morning, and find your joy”. I’m reminded of this lesson everywhere I go and with everyone I meet.
I officially retired on August 1st, although I had been out of work on disability for 2 years. I had a nice retirement luncheon with many friends and it was beautiful and gave me positive closure to my career. I’m trying to figure out retirement along with my hubby. So far, everyday is like a Saturday. Slow morning start, a few chores and errands, then rest/nap/tv until time to cook dinner. I’ve slowed down a lot. Some of it is necessary and expected, but I fear some of it is also an excuse. I know I need to find a couple of more activities to occupy my hands and brain. But not today. I don’t do this often, but I’m giving in to not feeling well and plan to spend the day in bed. I’m cautious about how much time I “rest” in my bedroom. Usually a couple of hours a day. Sometimes I nap, sometimes I read and sometimes just enjoy the solitude. But I make myself get up and come downstairs after no more than 2 hours. I catch a few car shows or wicked tuna or other macho shows with my husband. It worries me just a little that I took a day in bed. I slept for hours, though, so maybe it was needed. I seem to be battling a partial blockage. I’ve learned the signs. This is not like an ER thing, but I need to back off to a liquid, soft diet and more liquid than food. This has happened once before and the fistula goes into overtime taking the pressure from blockage. That means I’m changing that thing every few hours! Such a hassle, and definitely confined to home. I think diet change and time will resolve it, hopefully soon. Lesson learned though….no matter how bad I want that chicken enchilada, I should rethink it…it’s not worth it. I don’t know if it was the enchilada. I think maybe a combination of things I ate. I had a reckless, indulgent day and now I’m paying the price.
I’ll pick up where I left off yesterday. I did better today, still monitoring the diet, still not feeling too well. This is when I get a little nervous, maybe not fully understanding what’s going on. I finished my week of chemo pills on Wednesday. I’m wondering when I’ll start feeling better, when the cancer shrinks back from my intestine and allows it to open up more. I really need this chemo to work. I don’t like being this slowed down. Bob and I are both afraid to travel thes days and that puts a damper on our retirement. I’d like to feel confident that I could travel again. I’m hoping maybe in a few more months. Sometimes I have to work pretty hard to not feel sorry for myself.
For the third week now, I am settled in my recliner tethered to my TPN. It’s a 16 hour infusion, most of which will occur over night. I’m hooked up from 6:00 p.m. To 10:00 a.m.. I can move about the house with the backpack, but it’s cumbersome. It’s almost dinner time for my husband. I smell steak on the grill. Yum. Sometimes I sit at the table with him, but seeing and smelling the food I can’t have is a little torturous so I often stay in the den with a cup of green tea or broth. It makes him feel bad too. I’m really missing food! I’m so lucky my husband is so self-sufficient. He’s not a gourmet cook, but he can follow simple recipes and create tasty meals. He’s also a grill master, so there’s that.
A short time after my surgery and 10 day unplanned vacation extension spent in Sarasota General Hospital, I experienced something very foreign and alarming to me. A fistula, from my intestine out through my tummy at the incision line. I never dreamed of my intestine tunneling through my skin and opening. A not uncommon surgical complication, I’m told. I spent 5 days on TPN in the hospital to rest the intestines and it looked like it had healed over. I came home on a soft diet but it opened right back up. I then began managing it with an ostomy appliance. What a nightmare that is! A couple of weeks after that, a second fistula opened an inch or two above the original. I went to the ER and back in the hospital. Started TPN, no food or drink by mouth, came home with TPN and I am allowed clear liquids. The second fistula has healed over and the original looks like it’s trying to, but still open. I’ve read that it can take 4 to 6 weeks on TPN for a fistula to heal. Ugh. That’s a long time not to chew on something. My weight is pretty low, but TPN is keeping my nutrition levels up. Energy is a problem. I wonder sometimes if I’m just getting lazy because I’ve been so sick and in and out of the hospital so often the last couple of months. I don’t want this to be my new normal lifestyle. I’ve gotten out around town a little but still feel like a bit of a shut-in. In summary, I’ve had 2 abdominal surgeries followed by 2 more hospitalizations since March. It has not been a good spring and summer.
I went to the Hobby Lobby today and stocked up on art supplies for my online drawing class I signed up for. Now that I’m $100 in, I’d better start those classes! I’m hoping to discover some deeply buried talent and a hobby to allow me to be quietly creative. The idea came to me when I realized my old past-times of long, fast walks and tennis may be a ways off, if I ever can do those again. I found myself wishing I could walk the 4 mile circuit of the local park and wishing I was playing competitive, or even bad, tennis. I may get there, but for now just wishing is stupid, so it’s time to explore other hobby options.
These complications of my cancer I could’ve never dreamed of when I started this journey. The ups and downs are extreme. More than once now, I’ve believed that I was spiraling toward the end. I’ve been told that, actually, by my surgeon who I’ve decided is a bit of an ass. Then I seem to recover and feel like I still have fight in me and a chance to reclaim my life. That’s where I am right now. The TPN is temporary (as far as I’m concerned) and I will resume a relatively normal lifestyle soon.
A lot has happened since my surgery in March. I recovered well, or so I thought. Eight weeks after surgery my husband and I took a much needed trip to one of our favorite locations, Longboat Key, just across the bay from Sarasota FL. We spent almost six full days enjoying the sun and water. I walked on the beach in the mornings taking in the peace and beauty, feeling so alive and optimistic. But that was not to last. On our last day, in the afternoon I became very ill and in terrible pain…blockage! We rushed off to the ER at Sarasota General Hospital and I was operated on about midnight to clear blockage and repair a perforation. It was a tough surgery and I spent a day in ICU before moving to the surgical care floor. In the meantime, hubby had to pack the condo in the dead of night as we had to check-out the next morning. What a fiasco! I spent 10 truly miserable days in Sarasota General. I was very sick, had e-coli in my abdomen, a nicked bladder and just a lot of pain. I was on TPN (IV nutrition) with no food or water by mouth for eight days. I was finally released on orders to stay on a liquid diet until I followed up with my surgeon at home. Bob and I started our journey home, splitting the eight hour drive in two days. I felt the most miserable I think I have ever felt. I was home a week recovering very slowly when I began having a lot of pain to the right of my incision. Of course it was a weekend and in fact a three day weekend, Memorial Day. Monday afternoon my tummy opened up and began leaking…from intestine. The next morning I was in my surgeon’s office and he put me in the hospital. I had the dreaded fistula, a fairly common surgical complication especially when there have been multiple surgeries. Apparently my bowel perforated again but this time tunneled to my skin and out. That was actually lucky. The body does some weird and amazing things. I was put on TPN, no food or drink again, in hopes of the fistula healing on it’s own. Surgery was a last resort if even that. Another big surgery to repair the fistula carried too much risk of doing me more harm than good. After several days, it appeared that I was healing. The leakage stopped and I advanced through clear liquids and full liquids and was released home only for the damn thing to open back up the first night home.
Oh jeez, I just need to shorten this story. Under the care now of my oncologist for this and after a long discussion of my condition and desired quality of life, I will manage my naturally formed colostomy, not repair it and not go on TPN. I will learn how to manage this hole in my body and continue to eat and live my life with some adjustment. I think of it like a colostomy except mine is naturally formed instead of surgically formed. That makes it different and a little harder to manage because it’s not placed or designed as well as if done surgically. It is just what it is. This is hard but I will adapt. I also understand that this solution may have a timeline and not work forever, as a surgical colostomy might. What it may do for me in the meantime though is work like a pressure release valve and protect me from another perforation anytime soon. No promises, but maybe.
It has taken me a while to write this blog. My head has not been in a good place and I was waiting for that to happen. I think I am beginning to gain some perspective though. It’s hard to put a cherry on top of this pile of poo, so I won’t even try.
I question again my motive for this blog. My hope was inspiration for others and I still want it to be that. I have changed, adapted and accepted things that I thought I never would. I am now working on acceptance of my declining health as a result of cancer and want to live as lovingly and gracefully as possible. I have terrible moments, but I try to come back to what is important. I’ve had several tell me that it is all part of God’s plan. I don’t think this is part of God’s plan, only because I don’t think he is orchestrating to this low a level. I do believe he knows me and is with me through this, but he didn’t put this on me as part of a plan. It is incumbent on me to look for my purpose in this life through all this and I’ve come to believe it is simply one of learning and growing. I’ve grown up. I’ve slowly let go of the impossible ideal life with picket fence and happily ever after and “Bring home the bacon and fry it up in a pan and never let him forget he’s a man” (you remember that!) and know that it’s the impact that I have on others, especially those close to me, that is my purpose here. I think I would still be chasing some Facebook worthy ideal of life if I were not walking this journey.
Was my last post a premonition or did I mentally set myself up for a fall? I’m afraid that putting into words some scary reality might have triggered what happened next. Just five days after that post I ended up in the ER with what I self-diagnosed to be another bowel blockage. That had me scared enough. The CT scan revealed not just blockage but a perforation as well. A double whammy. My usual surgeon was called in and came to the ER late in the afternoon to deliver what was already devastating news in a devastating way. Because of one of the anti-cancer biologic drugs I was on, healing from wound/surgeries is jeopardized. The prognosis from the surgeon rolled off his tongue way too easily. Without hesitation he told me my situation was catastrophic and with or without surgery I was terminal. With surgery, I would not heal due to the biologic and will surely decline. Without surgery, I would experience sepsis and surely decline. He would give me and my husband overnight to decide if we wanted him to perform surgery. He offered us no hope. I got the distinct vibe that he did not want to perform surgery on me, that his attitude was ‘the old gal has had a good run.’ In a New York minute, everything changed. My time had come. This was a conversation I was not ready for, but at the same time not surprised by. I know the risks of my medications. I understand the risk of my cancer’s predisposition to hanging out on my intestines. I asked my surgeon if he had talked with my oncologist; no, but he had consulted others. I wish he had taken a few minutes to talk with Dr. R. I had been in contact with my oncologist, Dr. R., from the ER keeping him posted and only at my hubby’s prompting did I email him to relay what my prognosis was. Frankly, I was at a place that I couldn’t see how he could help. But I was wrong. He immediately called the surgeon and then later reported back to me that he did not see my situation as catastrophic. My dosage of the biologic (Avastin) was 1/5th the normal dose…not given to do the heavy lifting, but to assist the partnered chemo drug. The Avastin would be out of my system quickly. It had been 5 days since infusion. There was still risk, but there was also hope. My decision leaning went from “Why have a big surgery if I will die an ugly death anyway?” to “I absolutely must have the surgery.” In the few hours in between, I’m not sure how long as time stood still for us, my husband and I cried and prayed. My two kids were called to come to the hospital to see me and to explain the risk I was facing. We thought this was the beginning of the end…a miserable, painful end that I admittedly fear.
The next morning, the surgeon came to my room and asked what my decision was. He never acknowledged that he spoke to my oncologist. He never softened his initial prognosis. I had the surgery. I have healed and am recovering well. I’ve started a new chemo regimen without Avastin that has a good running start from the results of yet another regimen abandoned. I am one lucky girl. In a New York minute, an email from my oncologist with a small but important piece of information changed everything again.
I admit that recovering from the reality of what almost-could-have-been is harder than the physical healing and for the first couple of weeks following surgery I was waiting for the other shoe to drop. I often wonder why I am still here. I feel so blessed to be, but also confused. I know time and a return of normalcy will help with that, normalcy however, being a constantly moving target.