Something cool happened to me today, which really picked me up. If you aren't aware, I am a huge fan of The Blues. One of my friends in California is also the person who persuaded me to write a cancer blog. He wrote one when he went on his cancer ride last year. His cancer is in remission. Yay for M! He is also friends with a wonderful Blues writer, singer, and harmonica player and his lovely wife, Charlie and Henri Musselwhite. (I heard Charlie perform when I lived on Maui back in the early 90s. He played at an upcountry bar/restaurant named Casanova's.) During one of M's and the Musselwhite's get togethers, M. told Charlie and Henri about my grace and humor under fire. Charlie and Henri responded by giving a gift to M. to send to me. It was one of Charlie's CDs with a lovely hand written message on the CD's cover: "Kind wishes to Nancy. Get well fast. Music is healing and even John Lee Hooker said "blues is a healer." - Charlie and Henri with Love."
The CD they sent me (Henri is Charlie's producer), Juke Joint Chapel, is a great Blues CD! It's got so many upbeat Blues Songs, and I need that right now. (If only it could cure indigestion, too!) I turned it up loud, and it sounded great as all good music does. I can't wait to play it in my car, and I know the people driving near me will be happy to hear it, too.
They also sent me the Dalai Lama Cancer healing chant with this note: The Dalai Lama has requested this CD to be copied and distributed freely. I will listen to this when I'm not so wired!
I've put together a list of Blues songs that includes some of my all-time favorites, as well as others whose titles paint a chronological story of my illness, as I see it doing down (or coming up.)
It Ain't Right
Messin' With the Kid
My Starter Won't Start This Mornin'
I'm Tore Down
Stop Breakin' Down
How Long, How Long Blues?
Blues, Why Do You Worry Me?
Back Door Man - reference to the origin of my cancer - ;-)
Hellhound On My Trail
Help Me
Got To Be Some Changes Made
Boom Boom
Give Me Back My Wig
That Ain't No Way to Treat a Lady
I'm Ready
Don't Look Back
We're Gonna Make It
River Hip Mama
Everything Gonna Be Alright
Wang Dang Doodle - http://www.youtube.com/watch?v=EBsrx40fiX0 - I love this early version by Koko Taylor
Thanks to M. for suggesting that I write a blog which continues to help me through this unplanned and uncharted journey. It's also going to be a good way for me to remember what happened, when I'm a mean, much older crone with a worse memory than I have now. And thanks to the Musselwhites, who did a kindness for someone they don't know. And many, more thanks to my family, friends, and Mother Nature, all of which have given me a greater appreciation for what is really important in this life, which is, of course, family, friends, and Mother Nature. Each one has helped me ride out the storm and see the light on the other side - not THAT other side!
Saturday, August 31, 2013
Bad tasting food for thought
For two weeks, I have not eaten raw fruits or vegetables. My staple food is fruit. I love it. I normally eat from 5 - 8 servings of fruit a day. But I was told by someone in the hospital that I should not eat raw fruits or vegetables, because of the potential for infection from handling by others. Given the appearance of the typical customer at the grocery where I shop, this seemed like good advice. A few days ago, I called my chemo doctor's office and talked to his nurse about my constant indigestion, and whether I would need more blood work before my next appointment. She said "yes" to more blood work, and I said "I want someone to access my port and not stick me in the arm." She agreed to do that. We were also going over my most recent lab work. She suggested I eat grapes to boost one of the low numbers. I told her I couldn't eat raw fruits or vegetables. She laughed and said, "Who told you that?" I told her someone in the hospital - I think it was one or more of the nurses. She told me that was totally wrong, and that I could eat both. So, that's what I've been doing, and it's been great, except for the way some things taste now.
That night, I went to the grocery for the first time with my newly shaved head under a ball cap and bought fruit and vegetables and foolish things, like a can of organic tomato basic soup by Wolfgang Puck for $2.75. I'll let you know if it was worth it. My protein and iron were low, so I bought a Polish sausage, which I love to eat with spicy mustard. I don't understand what could be giving me constant indigestion!
My taste buds have become fickle, and I never know when something is going to go from bad to good or vice versa. Organic lemonade was great for awhile, so I bought several containers. Then all things sweet went to taste bud hell, and lemonade - and many other things - no longer tastes good. I bought orange juice to help improve another low blood test score, and it tasted terrible. It's one of the foods that has a metallic taste. I had bought the largest container in the store, too. Sometimes, I pour a small glass and drink it quickly, just to get some in me. I love sweets, but now, I can only take a very small bite and put it aside. Tomatoes are on the A-Okay list. I slice one and put some shredded mozzarella cheese, olive oil, and fresh basil on it, then heat it in the microwave. It's so good! My brother and sister-in-law have several fantastic gardens with flowers, herbs, and vegetables, and they gave me a bunch of home grown tomatoes and some basil to take home after my hair was buzzed off this past week. Last weekend, I went to their place - yes, I can drive - and we sat outside under a shade tree and talked and felt the breeze and watched the butterflies, birds, and bees flit about. It was so peaceful and comforting.
Steak also tastes good and my housemate cooked them on the grill earlier this week. With the steaks, we ate some of the side dishes that my friend has been cooking for me every week. My housemate said if she ever opens a restaurant, he wants to know about it. Her food is amazing and she delivers it to me. Some of my family and friends have been sending her money to go towards my meals, and that has been great. Not just because I don't have to cook, but because if I did cook, I wouldn't eat my own cooking, unless it was microwaved tomatoes, mozzarella, olive oil, and basil.
For those of you who know me and are curious about my "housemate," he was a good friend and mentee of my brother who committed suicide earlier this year. He is in his late 20s, lives downstairs, and uses my kitchen when he wants. We have had a very comfortable living arrangement for about 8 years, and he helps with chores around the house. For the last few months, he has been walking the dogs every night with my neighbors (or me, when I'm feeling energetic) and going to the store when I need something. It's nice having him here, especially now, when I'm not quite up to par.
At my doctor's appointment yesterday, he said that I had tolerated the aggressive chemo well and didn't think I'd have a problem with the next round in less than 2 weeks. I think I've done well, too, although it hasn't been without some bad/bald spots. But once I got over the headache, nausea, and vomiting while I was in the hospital (and my brother's car) and graduated to constant indigestion, hair loss, fatigue, and bad tasting food, it was a piece of cake. But I couldn't eat it, because it was too sweet.
That night, I went to the grocery for the first time with my newly shaved head under a ball cap and bought fruit and vegetables and foolish things, like a can of organic tomato basic soup by Wolfgang Puck for $2.75. I'll let you know if it was worth it. My protein and iron were low, so I bought a Polish sausage, which I love to eat with spicy mustard. I don't understand what could be giving me constant indigestion!
My taste buds have become fickle, and I never know when something is going to go from bad to good or vice versa. Organic lemonade was great for awhile, so I bought several containers. Then all things sweet went to taste bud hell, and lemonade - and many other things - no longer tastes good. I bought orange juice to help improve another low blood test score, and it tasted terrible. It's one of the foods that has a metallic taste. I had bought the largest container in the store, too. Sometimes, I pour a small glass and drink it quickly, just to get some in me. I love sweets, but now, I can only take a very small bite and put it aside. Tomatoes are on the A-Okay list. I slice one and put some shredded mozzarella cheese, olive oil, and fresh basil on it, then heat it in the microwave. It's so good! My brother and sister-in-law have several fantastic gardens with flowers, herbs, and vegetables, and they gave me a bunch of home grown tomatoes and some basil to take home after my hair was buzzed off this past week. Last weekend, I went to their place - yes, I can drive - and we sat outside under a shade tree and talked and felt the breeze and watched the butterflies, birds, and bees flit about. It was so peaceful and comforting.
Steak also tastes good and my housemate cooked them on the grill earlier this week. With the steaks, we ate some of the side dishes that my friend has been cooking for me every week. My housemate said if she ever opens a restaurant, he wants to know about it. Her food is amazing and she delivers it to me. Some of my family and friends have been sending her money to go towards my meals, and that has been great. Not just because I don't have to cook, but because if I did cook, I wouldn't eat my own cooking, unless it was microwaved tomatoes, mozzarella, olive oil, and basil.
For those of you who know me and are curious about my "housemate," he was a good friend and mentee of my brother who committed suicide earlier this year. He is in his late 20s, lives downstairs, and uses my kitchen when he wants. We have had a very comfortable living arrangement for about 8 years, and he helps with chores around the house. For the last few months, he has been walking the dogs every night with my neighbors (or me, when I'm feeling energetic) and going to the store when I need something. It's nice having him here, especially now, when I'm not quite up to par.
At my doctor's appointment yesterday, he said that I had tolerated the aggressive chemo well and didn't think I'd have a problem with the next round in less than 2 weeks. I think I've done well, too, although it hasn't been without some bad/bald spots. But once I got over the headache, nausea, and vomiting while I was in the hospital (and my brother's car) and graduated to constant indigestion, hair loss, fatigue, and bad tasting food, it was a piece of cake. But I couldn't eat it, because it was too sweet.
Wednesday, August 28, 2013
Mama's got a squeezebox she holds under her chin
I'm probably past the point of remembering much about the first three chemo infusions I had as an inpatient procedure two weeks ago. But I'll see what I can dredge up. On August 13, a bed was available in the chemo wing of the hospital, courtesy of a nurse friend of mine who had obtained a room for me. My brother and his wife took me there with all the comforts of home: iPhone, laptop, speakers for iPhone, chargers for phone and laptop, books, and my robe for walking and not exposing my ever shrinking ass. I didn't take my PJs, because if I'm going to vomit or poop on anyone's PJs, I don't want it to be mine. What I wanted most to take were my dogs and cat, but that didn't seem like a good idea to anyone but me.
So, I met my very nice nurse for the next 12 hours, and he filled me in on what was going to happen and introduced me to my CA for the next 12 hours. I must say that all the nurses and CAs in this wing of the hospital were very nice and knowledgeable. Even the woman from housekeeping was upbeat and we talked about Blues artists whenever she was there. The nurses and CAs still came in regularly to check my vitals, but that's part of the drill.
I had barely gotten into my hospital gown (opens in the rear) and in the bed when the nurse announced that I had a visitor. I was incredulous. It was the former CEO of the hospital who was on a Board with a mutual friend. She had told him I was there and he came to visit. He was very nice and funny and informative and stayed for a long time. He started my stay out on a positive note. It didn't hurt that the nurses noticed who my first visitor was!
My first night's infusion did not begin until 8:00 PM. That would not have been a problem, except that there were three infusions the first night, and they began with some preventative drugs to keep side effects in check, then the first drug was administered in a drip over a three hour period. After the first drug was in, they started the second drug with a preventative drug, and it lasted for two hours. Then, there was a third drug, preceded by a preventative drug and the third drug is administered over a two hour period, too. They wanted me to stay awake, so I could alert them to any side effects, so I was up until 1:00 AM when all the drugs were in me, plus an additional hour from being jacked up over the events of the day. And of course, the CA and nurse and doctors came in at their regular scheduled times, which apparently is anytime the patient is asleep.
One of the procedures that was followed for each infusion was comforting, but also made me think about how serious this was. Two nurses had to be present when the drugs were first started in the IV. My wristband was checked for the correct name and birthday, and one nurse held the orders while the other nurse described what was happening as far as what the drug was, and how much of it was being administered, and over what time period, as well as how much per hour was being given. The nurse who hooks up the chemo bags to the IV also had to put on a special gown and gloves in case any of the drugs were to spill. I can't remember if both nurses had to wear the protective coverings or only one, so don't quote me on this part.
When the doctors and students and interns made their early morning rounds the second day, I told them that I hadn't had any issues and felt pretty good. The Fellow warned me that things could change quickly. I said, "I don't care, I'm going to believe that days two and three will be as good as the first day was." He told me to keep that attitude.
The second and third nights' infusions involved only one of the three drugs and they lasted for two hours each, but had to start at 8:00 PM when the first night's infusion started. These went without a hitch, too.
I got through all three days of infusions without any issues, but when I woke up Friday morning, the day I was supposed to go home, I had a terrible headache with nausea and vomiting. Yep, it was a smart move to not wear my PJs after all. So, I wasn't allowed to go home, but honestly, I felt so terrible that I wanted to stay in the hospital. They kept pumping me with fluids and potassium and magnesium which were both low. I couldn't stand the thought of eating anything, especially anything the kitchen was offering me, and they weren't going to let me go home until I could keep something down. They gave me anti-nausea drugs and pain meds. Friday was spent in bed and in misery. Saturday, I felt a little better. The headache was gone, but the nausea was still around. I found that they have a new vomit bag (new to me) which is like a squeezebox with one end closed. You vomit in the open end (be sure to hold the correct end next to your mouth!) and the vomit expands the bag AND measures how much you vomited. If you are not aware, they measure EVERYTHING in the hospital: pee, poop, vomit, fluids in, drugs in etc. (I took several vomit bags home with me and now have them in each room for quick access. It makes a great conversation piece, too!) In the early afternoon, I ordered the only thing that I thought I could keep down: two hard boiled eggs. I ate one and left the other. A few hours later, one of the doctors arrived to say I could leave, since I'd kept the egg down. I called my brother and he came to pick me up a little while later. Luckily, I held a vomit bag on the ride home and managed to produce some bile in it. Neither my brother nor I measured how much. And, the egg stayed down!
So, I met my very nice nurse for the next 12 hours, and he filled me in on what was going to happen and introduced me to my CA for the next 12 hours. I must say that all the nurses and CAs in this wing of the hospital were very nice and knowledgeable. Even the woman from housekeeping was upbeat and we talked about Blues artists whenever she was there. The nurses and CAs still came in regularly to check my vitals, but that's part of the drill.
I had barely gotten into my hospital gown (opens in the rear) and in the bed when the nurse announced that I had a visitor. I was incredulous. It was the former CEO of the hospital who was on a Board with a mutual friend. She had told him I was there and he came to visit. He was very nice and funny and informative and stayed for a long time. He started my stay out on a positive note. It didn't hurt that the nurses noticed who my first visitor was!
My first night's infusion did not begin until 8:00 PM. That would not have been a problem, except that there were three infusions the first night, and they began with some preventative drugs to keep side effects in check, then the first drug was administered in a drip over a three hour period. After the first drug was in, they started the second drug with a preventative drug, and it lasted for two hours. Then, there was a third drug, preceded by a preventative drug and the third drug is administered over a two hour period, too. They wanted me to stay awake, so I could alert them to any side effects, so I was up until 1:00 AM when all the drugs were in me, plus an additional hour from being jacked up over the events of the day. And of course, the CA and nurse and doctors came in at their regular scheduled times, which apparently is anytime the patient is asleep.
One of the procedures that was followed for each infusion was comforting, but also made me think about how serious this was. Two nurses had to be present when the drugs were first started in the IV. My wristband was checked for the correct name and birthday, and one nurse held the orders while the other nurse described what was happening as far as what the drug was, and how much of it was being administered, and over what time period, as well as how much per hour was being given. The nurse who hooks up the chemo bags to the IV also had to put on a special gown and gloves in case any of the drugs were to spill. I can't remember if both nurses had to wear the protective coverings or only one, so don't quote me on this part.
When the doctors and students and interns made their early morning rounds the second day, I told them that I hadn't had any issues and felt pretty good. The Fellow warned me that things could change quickly. I said, "I don't care, I'm going to believe that days two and three will be as good as the first day was." He told me to keep that attitude.
The second and third nights' infusions involved only one of the three drugs and they lasted for two hours each, but had to start at 8:00 PM when the first night's infusion started. These went without a hitch, too.
I got through all three days of infusions without any issues, but when I woke up Friday morning, the day I was supposed to go home, I had a terrible headache with nausea and vomiting. Yep, it was a smart move to not wear my PJs after all. So, I wasn't allowed to go home, but honestly, I felt so terrible that I wanted to stay in the hospital. They kept pumping me with fluids and potassium and magnesium which were both low. I couldn't stand the thought of eating anything, especially anything the kitchen was offering me, and they weren't going to let me go home until I could keep something down. They gave me anti-nausea drugs and pain meds. Friday was spent in bed and in misery. Saturday, I felt a little better. The headache was gone, but the nausea was still around. I found that they have a new vomit bag (new to me) which is like a squeezebox with one end closed. You vomit in the open end (be sure to hold the correct end next to your mouth!) and the vomit expands the bag AND measures how much you vomited. If you are not aware, they measure EVERYTHING in the hospital: pee, poop, vomit, fluids in, drugs in etc. (I took several vomit bags home with me and now have them in each room for quick access. It makes a great conversation piece, too!) In the early afternoon, I ordered the only thing that I thought I could keep down: two hard boiled eggs. I ate one and left the other. A few hours later, one of the doctors arrived to say I could leave, since I'd kept the egg down. I called my brother and he came to pick me up a little while later. Luckily, I held a vomit bag on the ride home and managed to produce some bile in it. Neither my brother nor I measured how much. And, the egg stayed down!
Saturday, August 10, 2013
Yes, sir, yes, sir, three bags full
Many of you may already know that I've been home from the colostomy surgery for a week now. What a wonderful event that was! I mean coming home, not the surgery. I did not take any notes while I was in the hospital to use for the blog, so most of what happened is not even a memory now, because my memory is better suited for events that happened decades ago. Most of the time, I'd be hard pressed to tell you what I did five minutes ago. Part of that may be because I live a fairly routine life, and I'm not doing much in the way of exciting things. Like my dogs, my life is mostly spent waking up, eating, napping, walking, eating, napping, eating and sleeping. Occasionally, I will read a book and fall asleep on the couch. And lately my life seems to revolve around poop, both mine and the dogs'.
The surgery went well. Right before the surgery, I was interviewed by all the doctors who were going to be involved in the surgery: surgeons, anesthesiologist, best boys, key grip, and so on. First, I saw my surgeon who inspires great confidence. She also has the ability to make wearing scrubs look like a fashion statement. Next, I talked to some anesthesiology med students or interns, or maybe they were actually doctors, I'm not sure. They were dressed for the part and they explained things to me, so I felt safe in their hands. They seemed to know what they were talking about, but they were in their late 20s. I think it's good that I was already on happy meds when they told me their ages. Their teacher showed up at some point, and they introduced me to him, then later, they told me there was a change of plans and another teacher was going to be there instead. I could tell that they were happy about this change of plans, so I was, too. I think the new anesthesiologist teacher doc was German, but I'm not sure. Apparently, I told him that I had been to Woodstock. I am not sure how I segued to that topic, but I'm sure it was smooth. Another surgeon came and talked to me, but I don't recall what about. I think he wanted to see the two blue "tattoos" on my belly where they would put either a colostomy or an ileostomy. I don't remember much after that, although I think I was still awake when they took me into surgery. They ended up doing a colostomy, because of the possibility of becoming dehydrated more easily while going through chemo.
More memory blur after the surgery, as I don't recall going to recovery or getting to my room. The section of the hospital I was in is in the revenue producing part and mostly has patients who have had colostomies. My new ostomy bag was monitored to see if poop was there, and I was on a liquid diet. I don't know how someone can ruin bouillon, but they managed. One time I had it, and it tasted like pure salt, and the next day, it tasted like dish water, or how I imagine dish water would taste. After a few days, I moved up to a soft diet which meant I could have jello, which I hate, and cream of wheat, which I hate, and more bouillon, which I would have liked if they could have made it right. I drank a lot of cranberry juice and water. I wasn't getting a lot of food in me, so I wasn't surprised that there was no poop in my bag. Meanwhile, I started walking around the nurses' station dragging my pole of IV fluids beside me, trying to encourage my digestive system to produce poop from liquids. As I walked the floor, I noticed the large photographs on the walls in the main corridor, as well as the ones I could see in other patients' rooms. They were mostly nature scenes in Louisville and were really quite nice. I had some concern that the one over my bed which was titled "Grinstead Drive" was actually the entrance to Cave Hill Cemetery. If I had a plot reserved there, I would have felt this was a bad omen.
If you have ever stayed in a hospital, you know that it is no place to recover from illness or surgery. For one thing, the beds are uncomfortable, for another, the food is bad, and finally, there's a constant stream of nurses, doctors, and clinical assistants coming in at all hours of the day and night to check on you. CAs would take my vitals around 1:00 AM, then some poor med student would come in around 4:00 AM to ask how I was. I usually said "sleepy" or "tired." They always wanted to check my bag, which usually wasn't much to look at. Another doctor came in around 5:00 AM and then a gaggle of med students, interns, and doctors came in around 6:00 AM. I think they came in those early hours, so I wouldn't remember to ask any questions or tell them of any concerns I had. Some of them looked very serious, or maybe they were tired, too, and some were smiling. I asked one of the surgeons if he had ever had a tube down his throat, and he one upped me by saying, yes, he had had to put one in his own nose, as well as give himself IVs, during med school. The young students with him said they hadn't had to do that. I think they should reinstate that process to up the empathy factor from doctors. Actually, I think they should all have to spend a few days in the hospital to see what it's like. I know some med schools actually have the students be admitted for imaginary illnesses and the nurses are not aware, so they are treated like the rest of us. Of all the nurses and CAs I had, only one nurse and one CA were not on par with the rest. Mostly, they were all compassionate, helpful, kind and encouraging.
The walking and non eating went on for days with no ostomy bag success. I had even graduated to real food, some of which was actually okay, but my bag was still empty. After five days of this, I started feeling really bad. My head hurt and I was achy all over, kind of like a bad flu. They gave me pain meds and warned me about needing to put a tube in my nose and down my throat if this continued. The threat was not enough to make my body respond, so a nurse put a 24 inch (2 feet!!) tube in my nose and down my throat. Do not try this at home. She first looked up my nostrils to see which one would accommodate the tubing and the lucky left nostril was the winner. I don't recall much about the actual insertion, except that it wasn't pleasant. I had to hold my head at a certain angle and I think they lubed the tube up with something before inserting it. Every time I swallowed, it hurt. It felt as if a huge pointy object was in the back of my throat. Blowing my nose was a challenge. Behind me hanging with the IV fluids was a container which was full of the green bile that they were extracting from my stomach with the tube. The reason I had started to feel so sick was that I was blocked on both ends. So, they kept the tube in my nose until it started running clear and they continued to monitor the ostomy bag. I was also put back on a liquid diet. Since I was unable to pee on my own, I had to get a catheter. A student nurse was excited to watch the catheter insertion on a woman (me), and her response after it was in was that she expected it to be more painful, because the guys usually cried when they had to be catheterized. It took two attempts for the nurse to get the catheter in, because the first one was too large. Another time, I told the nurse that my port was hurting, so she let a student nurse deactivate it and reactivate it. Unfortunately, the reactivating part did not go well, so it had to be done again. I was grateful when the nurse asked the student if she wanted to try the second time and she said "no."
Eventually, I was able to produce some liquid poop and the bile was gone from my stomach, so they removed the nose tube. A doctor came in to remove it and told me on the count of "3" he was going to pull it out. I think it took two yanks to get it out. When he tossed it in the trash, I took a peek. After he left, I fell asleep and dreamed of snakes. Later that day, they took out the catheter, too.
I had several visitors while I was in the hospital, most of whom just showed up and surprised me. My walking buddies from work walked from the office to the hospital, and that was a nice surprise. Another friend, who had helped me through my brother's suicide earlier this year, came and stayed for a long afternoon and stood up to the CA who was bullying me. This CA needs to find another job. I would suggest something in a correctional institution. And two grade school friends who live in California and Cape Cod who were in town, contacted me to go out to lunch, but since that wasn't an option, they stopped by to visit. Another friend from college and his wife called and set up a visit on a Sunday. She brought fresh peaches and ended up making me a peach dessert using the the slim pickings of angel food cake served with my dinner. After she did her magic and added some vanilla ice cream, it was not only edible, but delicious! My best buddy neighbor visited more than once and her husband came with her on one visit. Two special friends who live in California called me many times. Local friends called or sent beautiful flowers, plants, and cards. My nieces and my sister-in-law also visited. My brother and his wife, who have been with me every step of the way, came many times and brought fresh lavender, a speaker/charger for my iPhone, and anything else that would make me feel more comfortable. My brother's wife went to bat for me over and over when things weren't going well, or I wasn't getting a timely response to something I needed. She was and continues to be a great advocate for me. I wish I had a video of the night when the nurse was changing my ostomy bag and my sister-in-law was there. Maybe it's just me, but ostomy poop smells like no other. It's rough. While he was changing the bag, she was doing some grand jete ballet steps across the back wall, spritzing lavender as she danced.
A few days after the tube was removed and the poop was forthcoming, I was told I could go home. It took awhile for the doctor's orders to get to the nurse, but finally around 2:00 PM on Sunday (after 11 days in the hospital), I was able to go home.
When we pulled up to my house, my housemate and my neighbors and their niece were standing at the bottom of my driveway waving strips of brightly colored, lacy fabric under a banner over the carport that my housemate had made which said "Welcome Home." I could see my dogs standing in the foyer. At last, I was home!
The surgery went well. Right before the surgery, I was interviewed by all the doctors who were going to be involved in the surgery: surgeons, anesthesiologist, best boys, key grip, and so on. First, I saw my surgeon who inspires great confidence. She also has the ability to make wearing scrubs look like a fashion statement. Next, I talked to some anesthesiology med students or interns, or maybe they were actually doctors, I'm not sure. They were dressed for the part and they explained things to me, so I felt safe in their hands. They seemed to know what they were talking about, but they were in their late 20s. I think it's good that I was already on happy meds when they told me their ages. Their teacher showed up at some point, and they introduced me to him, then later, they told me there was a change of plans and another teacher was going to be there instead. I could tell that they were happy about this change of plans, so I was, too. I think the new anesthesiologist teacher doc was German, but I'm not sure. Apparently, I told him that I had been to Woodstock. I am not sure how I segued to that topic, but I'm sure it was smooth. Another surgeon came and talked to me, but I don't recall what about. I think he wanted to see the two blue "tattoos" on my belly where they would put either a colostomy or an ileostomy. I don't remember much after that, although I think I was still awake when they took me into surgery. They ended up doing a colostomy, because of the possibility of becoming dehydrated more easily while going through chemo.
More memory blur after the surgery, as I don't recall going to recovery or getting to my room. The section of the hospital I was in is in the revenue producing part and mostly has patients who have had colostomies. My new ostomy bag was monitored to see if poop was there, and I was on a liquid diet. I don't know how someone can ruin bouillon, but they managed. One time I had it, and it tasted like pure salt, and the next day, it tasted like dish water, or how I imagine dish water would taste. After a few days, I moved up to a soft diet which meant I could have jello, which I hate, and cream of wheat, which I hate, and more bouillon, which I would have liked if they could have made it right. I drank a lot of cranberry juice and water. I wasn't getting a lot of food in me, so I wasn't surprised that there was no poop in my bag. Meanwhile, I started walking around the nurses' station dragging my pole of IV fluids beside me, trying to encourage my digestive system to produce poop from liquids. As I walked the floor, I noticed the large photographs on the walls in the main corridor, as well as the ones I could see in other patients' rooms. They were mostly nature scenes in Louisville and were really quite nice. I had some concern that the one over my bed which was titled "Grinstead Drive" was actually the entrance to Cave Hill Cemetery. If I had a plot reserved there, I would have felt this was a bad omen.
If you have ever stayed in a hospital, you know that it is no place to recover from illness or surgery. For one thing, the beds are uncomfortable, for another, the food is bad, and finally, there's a constant stream of nurses, doctors, and clinical assistants coming in at all hours of the day and night to check on you. CAs would take my vitals around 1:00 AM, then some poor med student would come in around 4:00 AM to ask how I was. I usually said "sleepy" or "tired." They always wanted to check my bag, which usually wasn't much to look at. Another doctor came in around 5:00 AM and then a gaggle of med students, interns, and doctors came in around 6:00 AM. I think they came in those early hours, so I wouldn't remember to ask any questions or tell them of any concerns I had. Some of them looked very serious, or maybe they were tired, too, and some were smiling. I asked one of the surgeons if he had ever had a tube down his throat, and he one upped me by saying, yes, he had had to put one in his own nose, as well as give himself IVs, during med school. The young students with him said they hadn't had to do that. I think they should reinstate that process to up the empathy factor from doctors. Actually, I think they should all have to spend a few days in the hospital to see what it's like. I know some med schools actually have the students be admitted for imaginary illnesses and the nurses are not aware, so they are treated like the rest of us. Of all the nurses and CAs I had, only one nurse and one CA were not on par with the rest. Mostly, they were all compassionate, helpful, kind and encouraging.
The walking and non eating went on for days with no ostomy bag success. I had even graduated to real food, some of which was actually okay, but my bag was still empty. After five days of this, I started feeling really bad. My head hurt and I was achy all over, kind of like a bad flu. They gave me pain meds and warned me about needing to put a tube in my nose and down my throat if this continued. The threat was not enough to make my body respond, so a nurse put a 24 inch (2 feet!!) tube in my nose and down my throat. Do not try this at home. She first looked up my nostrils to see which one would accommodate the tubing and the lucky left nostril was the winner. I don't recall much about the actual insertion, except that it wasn't pleasant. I had to hold my head at a certain angle and I think they lubed the tube up with something before inserting it. Every time I swallowed, it hurt. It felt as if a huge pointy object was in the back of my throat. Blowing my nose was a challenge. Behind me hanging with the IV fluids was a container which was full of the green bile that they were extracting from my stomach with the tube. The reason I had started to feel so sick was that I was blocked on both ends. So, they kept the tube in my nose until it started running clear and they continued to monitor the ostomy bag. I was also put back on a liquid diet. Since I was unable to pee on my own, I had to get a catheter. A student nurse was excited to watch the catheter insertion on a woman (me), and her response after it was in was that she expected it to be more painful, because the guys usually cried when they had to be catheterized. It took two attempts for the nurse to get the catheter in, because the first one was too large. Another time, I told the nurse that my port was hurting, so she let a student nurse deactivate it and reactivate it. Unfortunately, the reactivating part did not go well, so it had to be done again. I was grateful when the nurse asked the student if she wanted to try the second time and she said "no."
Eventually, I was able to produce some liquid poop and the bile was gone from my stomach, so they removed the nose tube. A doctor came in to remove it and told me on the count of "3" he was going to pull it out. I think it took two yanks to get it out. When he tossed it in the trash, I took a peek. After he left, I fell asleep and dreamed of snakes. Later that day, they took out the catheter, too.
I had several visitors while I was in the hospital, most of whom just showed up and surprised me. My walking buddies from work walked from the office to the hospital, and that was a nice surprise. Another friend, who had helped me through my brother's suicide earlier this year, came and stayed for a long afternoon and stood up to the CA who was bullying me. This CA needs to find another job. I would suggest something in a correctional institution. And two grade school friends who live in California and Cape Cod who were in town, contacted me to go out to lunch, but since that wasn't an option, they stopped by to visit. Another friend from college and his wife called and set up a visit on a Sunday. She brought fresh peaches and ended up making me a peach dessert using the the slim pickings of angel food cake served with my dinner. After she did her magic and added some vanilla ice cream, it was not only edible, but delicious! My best buddy neighbor visited more than once and her husband came with her on one visit. Two special friends who live in California called me many times. Local friends called or sent beautiful flowers, plants, and cards. My nieces and my sister-in-law also visited. My brother and his wife, who have been with me every step of the way, came many times and brought fresh lavender, a speaker/charger for my iPhone, and anything else that would make me feel more comfortable. My brother's wife went to bat for me over and over when things weren't going well, or I wasn't getting a timely response to something I needed. She was and continues to be a great advocate for me. I wish I had a video of the night when the nurse was changing my ostomy bag and my sister-in-law was there. Maybe it's just me, but ostomy poop smells like no other. It's rough. While he was changing the bag, she was doing some grand jete ballet steps across the back wall, spritzing lavender as she danced.
A few days after the tube was removed and the poop was forthcoming, I was told I could go home. It took awhile for the doctor's orders to get to the nurse, but finally around 2:00 PM on Sunday (after 11 days in the hospital), I was able to go home.
When we pulled up to my house, my housemate and my neighbors and their niece were standing at the bottom of my driveway waving strips of brightly colored, lacy fabric under a banner over the carport that my housemate had made which said "Welcome Home." I could see my dogs standing in the foyer. At last, I was home!
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