My first two posts were largely about the first phase of this experience: getting sick, dealing with and learning about the disease and treatments, figuring out the many different appointments - where I have to go and when and with what frequency, what I have to do at home, and coping with some side-effects.
Since then, I feel like I've moved into the next phase of "ok, let's get on with it". Nothing is too new anymore. I've been to the Tom Baker at least half a dozen times, I know where all the departments are, I've got my routine down at home with the drug schedules, temperature checking, food do's and don'ts etc.
This past week or so has been quite eventful. First, let me say that I've felt great. My appetite has been really good and I've gained back about 5-6 lbs from my skinniest point, which is awesome! Second, I've had a really FUN week of going out, and NOT to the hospital! Yay!! I went shopping and out to restaurants and had a few visitors over.
As I mentioned in my last update, the need for a hat was very pressing. My whole life, I've never found a hat that looked good on me. When I go golfing I wear a baseball cap, but they're usually too big and I don't care too much what I look like on the golf course since I'm usually in the trees looking for my ball. So the challenge was on. My friend Kari bravely picked up the gauntlet and announced "I will find you a hat". We went shopping last Saturday, and like all proper shopping trips it started with lunch. Okay, it was a two hour lunch. She eats really slow. But I had faith in her magical hat finding abilities so I was happy to lounge a bit over salt and pepper squids at Calgary Court.
We finally make it to the first store, I try on the first hat - I love it. They have the same style in different colours - I buy three of them. Definition of a successful shopping trip? Two hours on food, ten minutes on shopping! I'm not and never have been much into fashion. So the hats are very simple, versatile, basic, but still very cute. Kind of like a cute painter's cap for chicks. Rock 'n roll - Jeannie has hats.
Now the real challenge - something for the winter cold, like a toque. Toques and Asians faces don't mix well. We went to MEC, a MECca for toques but I only found one that I liked. It was some ridiculous price so we went across the street to what used to be Coast Sports. It took a bit longer, but we found two toques that actually look decent.
Lunch: $35
Three Hats: $88
Two Toques: $42
Having a friend with magical hat finding abilities: Priceless
The next big thing this week was my second chemotherapy treatment. This was a bit new, in that it was the first one as an Out Patient. It's very sad how busy they are there. The treatment room is really big - I think there's about 15 or so beds/chairs separated by curtains. But there's a whole row of windows so it's very bright and not at all depressing. Wayne came with me of course, and it was completely painless. They just hooked up my IV and started pumping various drugs into me. The first one was a "push", meaning instead of letting it drip into your IV from a bag, they actually use a syringe and push the drug into your IV. It's a bit unnerving I have to say, to see someone with a giant syringe pushing a bright red liquid directly into your vein. Yah, I can feel everyone wincing as they read that! But really, they go slow and you don't feel anything at all.
I was in a comfy chair, texting and instant messaging on my phone (with one hand), listened to my iPod for a while, and before I knew it, three hours had passed and I was done. That was just two days ago, so now I wait to see when and how it hits me. I'm still feeling good today.
The last big thing this week is the hair. It's gone. I shaved it all yesterday and am really, really happy about it. I'd rather be bald than have it continue to fall out. The constant clean up and feeling of hair down the back of my shirt was driving me mad. Besides, with the rate at which it was falling out, there was no doubt it was all coming out anyway. It's pretty weird seeing myself bald. I have to admit I'm not used to it yet. And it's so cold!! It's fine sitting on the couch, but just walking in the house is chilly from the breeze. So I have an indoor cap and some excellent outdoor hats.
I also did what I thought I would never do. I went to this place and bought a wig! I know - kinda crazy. I wasn't at all interested in the idea and thought I would look ridiculous. But I heard they will totally customize it, cut it and thin it out so it feels and looks they way you want. Besides, my work benefits covers it so it's a free experiment. The people at this place are in fact very compassionate. They set you up in a private room and have lots of great advice and information. They also shaved my head for free. I got a wig that will look pretty much like my short hairstyle, but a bit thicker (I mean, why not!) and nicer. I don't get it until next week because they have to order it in. I wanted it in a different colour, ... and with the sports package, but definitely no sunroof.
Overall, an extremely successful week. Two treatments down, four to go. Head shaved. Hats found. Wig on the way. There have been some comments about me being brave through all of this and keeping my sense of humor etc. I appreciate the kind thoughts, but really, so far I've only written my blog when I'm feeling good, which means I'm in good spirits and feeling... normal?. My next post might be in a few days when treatment #2 kicks in, and it could likely just say "I feel like shit and cancer sucks!"
But for now, I'm thankful I've had a great stretch of good days. Thanks everyone for the continued support and comments on my blog and emails. It's great to hear from people and it was so awesome to see some friend this week.
Thursday, February 17, 2011
Tuesday, February 8, 2011
The Year of the Rabbit, Not The Hair
Yesterday we had another trip to the clinic. So far, all of my appointments have been very early in the morning, this one being the earliest at 7:30am. Those who know me know how much I loooooooove mornings, but it's actually good. By the time we leave, the waiting rooms are packed, the lineup for the lab fills the hallway, and the parking lot is "FULL". Besides, it's not like we're up partying late these days so it's nice to get in first and get out of there. However, it would be nice if one of these times it wasn't f'n minus 25 degrees C.
So very good news! My white blood count is WAY up! Whoo hooo! Let's go find some germs and kick some ass!
I found a way to use my superior intellect to tap into the specific part of my brain that is responsible for overseeing the manufacturing of neutrophils and successfully stimulated my bone marrow to generate more. It wasn't that hard, really. You know, for me anyway.
Ok, well maybe they gave me some drugs that I injected into myself that kinda does the same thing. But hey - I had to do the sub-cutaneous injections myself so that's gotta count for something. And it only took me about 7 minutes and about 5 "hesitation pokes" to work up the courage to finally do it. Yes, diabetics and others who do this daily are laughing at me, but man, it's REALLY weird to stick a needle into yourself the first time (I only did marginally better the 2nd, 3rd and 4th time). I mean, we're kinda designed to NOT do that to ourselves. You're raised your whole life to be careful and not hurt yourself. How many times growing up were you told "See this sharp pointy thing?! Stay away from it and for GOD sakes whatever you do, do NOT poke yourself with it!"
I was pretty proud of myself the first time I did it - probably more than I should have been on the scale of "achievements". I made my mom go upstairs - no way I could do it with her nervous energy around. When I finally got the needle in (they recommend your tummy), I was so thrilled I even did a fist pump with a "yes!" like I'd just sunk a 15 foot putt. I was so excited I nearly forgot to actually inject the medicine. Yah, that's me and my superior intellect alright.
This drug I have to inject is called Neupogen Filgrastim, and the doctors always call it "GCSF" because it is belongs to the family of medications known as granulocyte colony stimulating factors (Google makes everyone look smart). For each cycle of chemotherapy, I have to have 3 injections of GCSF, one a day for 3 days, and specifically on days 10-12 after chemo. The idea is that you get chemo (call this Day 1), feel like you got hit by a truck on days 7-9, then you start to feel better and recover for your next treatment, with the help of the GCSF injections. This first chemo treatment they gave me 5 GCSFs, simply because I was in such bad shape. I had one the day I left the hospital (Day 4), then they sent me home with a pre-loaded needle to do myself the next day (Day 5). Then I had the regular 3 in a row on days 10, 11 and 12. So I have 5 shots now under my belt (quite literally, you know, if I wore a belt).
So that's the good news. I'm continuing to feel good, my counts are up, and am more confident now knowing I must have done the injections correctly :)
On the not-so-good-news side of things, my hair has already started to fall out. I was expecting it (though hoping it might not) but not quite so soon. It's not coming out in huge batches or anything, but it is definitely falling out. I know it's not like I have this amazing head of hair that is my signature like Farrah Fawcett (hmm... hers fell out too). But I don't have much to begin with, so if it's starting to fall out already after one treatment...you know, it's an emotional thing. For those who haven't seen me in a while, I'd grown my hair out to about shoulder length. One of the first things I wanted to do once my counts were high enough to venture to public places was to get my hair cut short again, so that when/if it started to fall out, there wouldn't be so much of it, which would help mentally but also wouldn't clog the drains and be so visible all over the place!
But now it's suddenly falling out already, and I started fretting and worrying about going to the salon and having tons come out as they washed and cut it and freaking out the hair stylist and other customers. I don't have a regular stylist and started worrying about how I could find someone who would be ok with the situation or maybe make house calls. What if it all falls out when they go to wash it? What if comes out in big chunks when they go to cut it? I was a bit upset about it all (ok, a lot upset) but as always, Wayne consoled me and devised a plan. He had recently found a hair stylist that he really, really liked and was sure she would be cool with the situation. He would call her the next day.
That next day (yesterday) after we got home from the clinic, he made appointments for both of us that afternoon with his stylist, Kara. He would go first, and while getting his hair cut explain my situation and that I was a bit nervous about it all. When it was my turn, Kara knew the whole story, was totally cool with it, and put me at ease right away. It helped too that nobody else was in the salon. She said cancer runs in her family and her Aunt is currently going through a very similar process. We chatted a bit, and I was ready to see what was going to happen. Apparently quite a bit of hair did come out in the wash, and she gently warned me that I will likely see quite a bit come out during the cutting and drying part. That's ok, I was feeling much better about it all by now.
Perhaps one of the best things was that I wore my glasses, which I had to take off during the cutting and styling, which meant I couldn't see a bloody thing the whole time! I was just happy that as she was going along, I could still make out some dark stuff on top of my head so I knew there was still *some* hair hanging on. Kara actually said she was surprised that not as much came out as she expected.
So now I have a really great, cute haircut that I'm very happy with, and what could have been a stressful experience turned out to be a very good one. I'm not sure how long the hairstyle will last, but I better get hat shopping this weekend! Any suggestions for hat styles or stores would be greatly appreciated. I am NOT doing the scarf/bandanna thing around the head and I don't want anything that falls into the "crochet" category.
As always, I have Wayne to thank for consoling and comforting me and always finding a way to make things ok for me. I haven't mentioned him much through all of this, but I don't know if I could get through it without him. He slept in an uncomfortable chair beside my hospital bed for three nights. He's a rock. He's a comedian when I need him to be. He keeps me positive. He talks me off the ledge. He puts together the plan when I don't know what to do. He makes me feel good about myself when I feel anything but! He's my hero and protector. As one of my friends said, "he's a good one to have in your corner". I'm one lucky girl.
So very good news! My white blood count is WAY up! Whoo hooo! Let's go find some germs and kick some ass!
I found a way to use my superior intellect to tap into the specific part of my brain that is responsible for overseeing the manufacturing of neutrophils and successfully stimulated my bone marrow to generate more. It wasn't that hard, really. You know, for me anyway.
Ok, well maybe they gave me some drugs that I injected into myself that kinda does the same thing. But hey - I had to do the sub-cutaneous injections myself so that's gotta count for something. And it only took me about 7 minutes and about 5 "hesitation pokes" to work up the courage to finally do it. Yes, diabetics and others who do this daily are laughing at me, but man, it's REALLY weird to stick a needle into yourself the first time (I only did marginally better the 2nd, 3rd and 4th time). I mean, we're kinda designed to NOT do that to ourselves. You're raised your whole life to be careful and not hurt yourself. How many times growing up were you told "See this sharp pointy thing?! Stay away from it and for GOD sakes whatever you do, do NOT poke yourself with it!"
I was pretty proud of myself the first time I did it - probably more than I should have been on the scale of "achievements". I made my mom go upstairs - no way I could do it with her nervous energy around. When I finally got the needle in (they recommend your tummy), I was so thrilled I even did a fist pump with a "yes!" like I'd just sunk a 15 foot putt. I was so excited I nearly forgot to actually inject the medicine. Yah, that's me and my superior intellect alright.
This drug I have to inject is called Neupogen Filgrastim, and the doctors always call it "GCSF" because it is belongs to the family of medications known as granulocyte colony stimulating factors (Google makes everyone look smart). For each cycle of chemotherapy, I have to have 3 injections of GCSF, one a day for 3 days, and specifically on days 10-12 after chemo. The idea is that you get chemo (call this Day 1), feel like you got hit by a truck on days 7-9, then you start to feel better and recover for your next treatment, with the help of the GCSF injections. This first chemo treatment they gave me 5 GCSFs, simply because I was in such bad shape. I had one the day I left the hospital (Day 4), then they sent me home with a pre-loaded needle to do myself the next day (Day 5). Then I had the regular 3 in a row on days 10, 11 and 12. So I have 5 shots now under my belt (quite literally, you know, if I wore a belt).
So that's the good news. I'm continuing to feel good, my counts are up, and am more confident now knowing I must have done the injections correctly :)
On the not-so-good-news side of things, my hair has already started to fall out. I was expecting it (though hoping it might not) but not quite so soon. It's not coming out in huge batches or anything, but it is definitely falling out. I know it's not like I have this amazing head of hair that is my signature like Farrah Fawcett (hmm... hers fell out too). But I don't have much to begin with, so if it's starting to fall out already after one treatment...you know, it's an emotional thing. For those who haven't seen me in a while, I'd grown my hair out to about shoulder length. One of the first things I wanted to do once my counts were high enough to venture to public places was to get my hair cut short again, so that when/if it started to fall out, there wouldn't be so much of it, which would help mentally but also wouldn't clog the drains and be so visible all over the place!
But now it's suddenly falling out already, and I started fretting and worrying about going to the salon and having tons come out as they washed and cut it and freaking out the hair stylist and other customers. I don't have a regular stylist and started worrying about how I could find someone who would be ok with the situation or maybe make house calls. What if it all falls out when they go to wash it? What if comes out in big chunks when they go to cut it? I was a bit upset about it all (ok, a lot upset) but as always, Wayne consoled me and devised a plan. He had recently found a hair stylist that he really, really liked and was sure she would be cool with the situation. He would call her the next day.
That next day (yesterday) after we got home from the clinic, he made appointments for both of us that afternoon with his stylist, Kara. He would go first, and while getting his hair cut explain my situation and that I was a bit nervous about it all. When it was my turn, Kara knew the whole story, was totally cool with it, and put me at ease right away. It helped too that nobody else was in the salon. She said cancer runs in her family and her Aunt is currently going through a very similar process. We chatted a bit, and I was ready to see what was going to happen. Apparently quite a bit of hair did come out in the wash, and she gently warned me that I will likely see quite a bit come out during the cutting and drying part. That's ok, I was feeling much better about it all by now.
Perhaps one of the best things was that I wore my glasses, which I had to take off during the cutting and styling, which meant I couldn't see a bloody thing the whole time! I was just happy that as she was going along, I could still make out some dark stuff on top of my head so I knew there was still *some* hair hanging on. Kara actually said she was surprised that not as much came out as she expected.
So now I have a really great, cute haircut that I'm very happy with, and what could have been a stressful experience turned out to be a very good one. I'm not sure how long the hairstyle will last, but I better get hat shopping this weekend! Any suggestions for hat styles or stores would be greatly appreciated. I am NOT doing the scarf/bandanna thing around the head and I don't want anything that falls into the "crochet" category.
As always, I have Wayne to thank for consoling and comforting me and always finding a way to make things ok for me. I haven't mentioned him much through all of this, but I don't know if I could get through it without him. He slept in an uncomfortable chair beside my hospital bed for three nights. He's a rock. He's a comedian when I need him to be. He keeps me positive. He talks me off the ledge. He puts together the plan when I don't know what to do. He makes me feel good about myself when I feel anything but! He's my hero and protector. As one of my friends said, "he's a good one to have in your corner". I'm one lucky girl.
Friday, February 4, 2011
The Tiger Leaves with a Bang
Over a year ago I started The Hotline, thinking I had clever things to say and witty ways to say them. I wrote one article, then realized I really didn't have that much to say, and I wasn't clever or witty enough to just to make clever/witty shit up.
But I have something to blog about now, and I don't have to be clever or witty or try to show how S-A-M-R-T I am. Don't get me wrong - there WILL be clever/witty moments, cause you know, that's just how I roll. But I have new purpose for blogging, one that will help me deal with a new challenge, and a way to keep friends and family up to date and in the loop on my situation.
OK so what's this all about? Well the Year of the Tiger and I never really got along. It should have been a great year since I wasn't working and I declared it the "Summer of Jeannie", with visions of golfing every day and lowering my handicap, relaxing and enjoying life without a care in the world. But the Tiger was in a pissy mood all summer, weather was shitty and I spent most of the summer and fall with a series of colds, coughs and sinus infections. I even lost my sense of smell for several months.
The terrible summer weather went right into the terrible winter weather (yah yah ok, October was nice), and it seemed everyone had their own reasons to kick the Tiger's ass out and get on with 2011.
For me, 2011 meant a new job, a move to the U.S., lots of fun and exciting stuff! Aahh, but the Tiger still lurks around until February... and it was saving the biggest bite for the tail end of its year.
I started my new job January 4th. On January 10th, I went to emergency with really bad abdominal and back pain. They ran a bunch of tests and did a CT scan. They didn't like what they saw, so they scheduled a biopsy for a few days later at the Foothills Hospital. It took over a week for those biopsy results to come back, and during that time my condition worsened very, very quickly. By the time I was scheduled to see the doctor on January 24th, I was immediately admitted to the Tom Baker Cancer Centre, diagnosed with Stage 4 non-Hodgkin Lymphoma. I started chemotherapy the next day. F'n Tiger.
I spent a week in the hospital and was very lucky to have a private room at the end of the hallway. That "lucky" feeling started wearing off quickly though. It's ironic that in many ways, the hospital is exactly where you shouldn't be to feel better! Yes, of course, thank goodness I was finally getting treatment and being monitored and knew if my condition went sideways, I was exactly where I needed to be. The nurses and people who work there are awesome. The care is fantastic and my doctor is amazing. But really, as far as feeling mentally better when you're sick, it's the opposite of "comfort at home with mom's chicken soup".
Ok for $7/day you get TV. That's good. And there's free wireless. That's good. But the wireless doesn't always work. Oh yah, and the TV has no real remote control, just a button on the side of your bed that changes the channel ONLY IN ONE DIRECTION. Ok, whatever. I got bigger things to worry about than the fact I have to cycle through from channel 7 to 95, one channel at a time, to get back to channel 5. Try to keep perspective, Jeannie.
It was not a pleasant week. They pumped me so full of fluids that I swelled up like Michelin Man. So they gave me drugs to get rid of it, which meant going to bathroom, quite literally, about every 3 minutes. Kind of that "too long to just stay in the bathroom" time frame, and just about enough time to walk yourself and your IV stand back to the bed, plug the IV machine back in, slowly get back into the bed, position yourself properly, lie back, and then... oh! gotta go again. Repeat this for about 18 hours.
There were so many drugs. You need to take these, but they make you nauseous, so take these anti-nausea meds, which make you constipated, so take these anti-constipation drugs. Oh, and those drugs will make you not sleep, so here's some sleeping drugs. Aaah yes, the first night with the cocktail of drugs and sleeping pills. I've never hallucinated before - I mean really, totally hallucinated, until that night. My sister-in-law bought me some mini-cupcakes and Wayne had brought a stuffed animal (cat) from home. They were both on the tray beside my bed. I took the sleeping pill, and at some point woke to go to the bathroom.
Much to my surprise, the cupcakes started talking to me. They were actually bickering amongst themselves. Some were telling me to move my IV stand to the other side of the bed. Other cupcakes were saying that was stupid, and I shouldn't do that because the cord won't reach to plug into the wall. The cat got in on the action and told the cupcakes to shut-up and leave me alone, then turned to me and told me to ignore them. I went to the bathroom and when I came back, they were still fighting amongst themselves and some were shouting at me to put the IV stand on the other side. When the nurse came in to take my vitals in the middle of the night, I wasn't totally sure if I had dreamed the whole thing, but sure enough, my IV stand was on the other side and the cord pulled tight to barely plug into the wall. She asked me about it and I just said "I don't know". I figured saying "the cupcakes made me do it" would land me a visit to a different ward that I didn't want to go to. It was a very weird experience and one I don't wish to repeat.
I was very, very happy to leave the hospital, albeit a bit scared because I was still feeling pretty sick.
I have been home for a week now and I feel much, much better.
The plan is that I will get another five treatments, one every three weeks. From now on, I should be just treated as an Out Patient. I'll go in, it'll take about 3 hours for them to get all the drugs into me through an IV, and then I go home. If I judge by how the first treatment went, which was that I felt pretty tired, weak and lousy up until yesterday, then it seems that the pattern will be: get chemo, feel crappy for 7-9 days, feel ok for 12 days, get chemo again. Doesn't sound too bad. One of side-effects of one of the drugs of course is that your hair may fall out. I could do without that. We'll have to see how it goes. I don't look good in hats.
The absolute priority right now is - DO. NOT. GET. AN. INFECTION. The most important type of white blood cells are called neutrohils. They're really the things that fight infection. My neutrophil count is 0.3. The normal/desired range is 2-9. So that's why there's so much caution against infection - I have almost no defenses.
The next most important thing is - EAT. I've lost a lot of weight, and 95 lbs doesn't look good on anyone, not even little Chinese women. I'm trying to eat but it's tough given the lack of appetite.
So that is how the Year of the Tiger left its mark on me. On the days like today where I feel pretty good, this blog will be my way keep my brain from turning to hospital-jello, serve as a journal of sorts, and keep everyone informed on the JoJo Hotline.
Thanks to everyone who already knew about this for their support and well wishes. I am very lucky to have such great family and friends.
I don't like Tigers anymore. And I'm trying not to take it out on Binky.
But I have something to blog about now, and I don't have to be clever or witty or try to show how S-A-M-R-T I am. Don't get me wrong - there WILL be clever/witty moments, cause you know, that's just how I roll. But I have new purpose for blogging, one that will help me deal with a new challenge, and a way to keep friends and family up to date and in the loop on my situation.
OK so what's this all about? Well the Year of the Tiger and I never really got along. It should have been a great year since I wasn't working and I declared it the "Summer of Jeannie", with visions of golfing every day and lowering my handicap, relaxing and enjoying life without a care in the world. But the Tiger was in a pissy mood all summer, weather was shitty and I spent most of the summer and fall with a series of colds, coughs and sinus infections. I even lost my sense of smell for several months.
The terrible summer weather went right into the terrible winter weather (yah yah ok, October was nice), and it seemed everyone had their own reasons to kick the Tiger's ass out and get on with 2011.
For me, 2011 meant a new job, a move to the U.S., lots of fun and exciting stuff! Aahh, but the Tiger still lurks around until February... and it was saving the biggest bite for the tail end of its year.
I started my new job January 4th. On January 10th, I went to emergency with really bad abdominal and back pain. They ran a bunch of tests and did a CT scan. They didn't like what they saw, so they scheduled a biopsy for a few days later at the Foothills Hospital. It took over a week for those biopsy results to come back, and during that time my condition worsened very, very quickly. By the time I was scheduled to see the doctor on January 24th, I was immediately admitted to the Tom Baker Cancer Centre, diagnosed with Stage 4 non-Hodgkin Lymphoma. I started chemotherapy the next day. F'n Tiger.
I spent a week in the hospital and was very lucky to have a private room at the end of the hallway. That "lucky" feeling started wearing off quickly though. It's ironic that in many ways, the hospital is exactly where you shouldn't be to feel better! Yes, of course, thank goodness I was finally getting treatment and being monitored and knew if my condition went sideways, I was exactly where I needed to be. The nurses and people who work there are awesome. The care is fantastic and my doctor is amazing. But really, as far as feeling mentally better when you're sick, it's the opposite of "comfort at home with mom's chicken soup".
Ok for $7/day you get TV. That's good. And there's free wireless. That's good. But the wireless doesn't always work. Oh yah, and the TV has no real remote control, just a button on the side of your bed that changes the channel ONLY IN ONE DIRECTION. Ok, whatever. I got bigger things to worry about than the fact I have to cycle through from channel 7 to 95, one channel at a time, to get back to channel 5. Try to keep perspective, Jeannie.
It was not a pleasant week. They pumped me so full of fluids that I swelled up like Michelin Man. So they gave me drugs to get rid of it, which meant going to bathroom, quite literally, about every 3 minutes. Kind of that "too long to just stay in the bathroom" time frame, and just about enough time to walk yourself and your IV stand back to the bed, plug the IV machine back in, slowly get back into the bed, position yourself properly, lie back, and then... oh! gotta go again. Repeat this for about 18 hours.
There were so many drugs. You need to take these, but they make you nauseous, so take these anti-nausea meds, which make you constipated, so take these anti-constipation drugs. Oh, and those drugs will make you not sleep, so here's some sleeping drugs. Aaah yes, the first night with the cocktail of drugs and sleeping pills. I've never hallucinated before - I mean really, totally hallucinated, until that night. My sister-in-law bought me some mini-cupcakes and Wayne had brought a stuffed animal (cat) from home. They were both on the tray beside my bed. I took the sleeping pill, and at some point woke to go to the bathroom.
Much to my surprise, the cupcakes started talking to me. They were actually bickering amongst themselves. Some were telling me to move my IV stand to the other side of the bed. Other cupcakes were saying that was stupid, and I shouldn't do that because the cord won't reach to plug into the wall. The cat got in on the action and told the cupcakes to shut-up and leave me alone, then turned to me and told me to ignore them. I went to the bathroom and when I came back, they were still fighting amongst themselves and some were shouting at me to put the IV stand on the other side. When the nurse came in to take my vitals in the middle of the night, I wasn't totally sure if I had dreamed the whole thing, but sure enough, my IV stand was on the other side and the cord pulled tight to barely plug into the wall. She asked me about it and I just said "I don't know". I figured saying "the cupcakes made me do it" would land me a visit to a different ward that I didn't want to go to. It was a very weird experience and one I don't wish to repeat.
I was very, very happy to leave the hospital, albeit a bit scared because I was still feeling pretty sick.
I have been home for a week now and I feel much, much better.
The plan is that I will get another five treatments, one every three weeks. From now on, I should be just treated as an Out Patient. I'll go in, it'll take about 3 hours for them to get all the drugs into me through an IV, and then I go home. If I judge by how the first treatment went, which was that I felt pretty tired, weak and lousy up until yesterday, then it seems that the pattern will be: get chemo, feel crappy for 7-9 days, feel ok for 12 days, get chemo again. Doesn't sound too bad. One of side-effects of one of the drugs of course is that your hair may fall out. I could do without that. We'll have to see how it goes. I don't look good in hats.
The absolute priority right now is - DO. NOT. GET. AN. INFECTION. The most important type of white blood cells are called neutrohils. They're really the things that fight infection. My neutrophil count is 0.3. The normal/desired range is 2-9. So that's why there's so much caution against infection - I have almost no defenses.
The next most important thing is - EAT. I've lost a lot of weight, and 95 lbs doesn't look good on anyone, not even little Chinese women. I'm trying to eat but it's tough given the lack of appetite.
So that is how the Year of the Tiger left its mark on me. On the days like today where I feel pretty good, this blog will be my way keep my brain from turning to hospital-jello, serve as a journal of sorts, and keep everyone informed on the JoJo Hotline.
Thanks to everyone who already knew about this for their support and well wishes. I am very lucky to have such great family and friends.
I don't like Tigers anymore. And I'm trying not to take it out on Binky.
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