An Embarassing Moment

This is just a shorty. After one of my first couple Chemos, we went to go stay at my grandma Doxey's house, we did this often after chemo. Because I was so sick and we usually got out of the hosptial Saturday night-we just drove the hour to my Grandma house. So I was doing good after those first chemos, I would only get nausous a couple of times; and would recover much faster.
Well if you know my grandparents, you know that they LOVE the Jazz. And during this time they were in the playoffs or finals with the Bulls- ahhh the good ol days of Malone and Stockon. On this Saturday night I felt like crap, but I was pretending to feel better than I was. You know- so that I would seem STRONG, like the chemo wasnt going to effect me. I wanted to put on a tough face! ha. it didn't last long.
To celebrate the BIG game, or just get get me a treat because of what I just went through, they got some big ice cream cones from somewhere? And I was toward the end of it, sitting on the couch, and all the sudden it came up with no warning! So much ice cream barf ALL over. It was the weirdest (and grossest) thing because I seriously didn't have any warning to run for the bunkers.
Man, I was REALLY embarassed. It was one of my "most embarassing" moments at the time. Probably for several reasons...

1. who likes to clean up barf. i mean common. and since I just did it they aren't going to let me help.

2. My Grandma is so good at keeping her house clean- then me happened.

3. We are a GUEST.

4. There goes my tough face...right down the drain. ok guys, it really does effect me.

Taking one for the Team

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I have been quite busy... and I have felt a little bit of a writers block. The things that have come to me to write I have been holding back on because they are toward the end of the chemo experience, but at the same time- there is not much that changed from each chemo treatment. for three years--once a month...weekends, holidays- my life was filled with medication and throwing up. I threw up so much that it was destroying my teeth, my throat, my stomach and sphincter. I was on Prevacid for the acid reflux that occured because my acid was so high and the rest of my sphincther and esophogas wouldn't work properly to keep it all down. (yeah, it still doesn't work the way it should, but it has healed a lot, speaking of which it is what woke me up this morning...couldn't sleep and can't figure out what I ate.)
So beacuse the throwing up was to hard on me and my body (both emotionally and physically) they really started to drug me. I would be out cold. My body became used to this so as soon as we would walk in the hospital. I would smell the smells and feel the familiarity come over me instantly I would yawn. A few times I fell asleep in the waiting room. I was relieved to be in a happier dream world for that 24 hours.
The drugs were nice- however, they didn't make it all go away. I would still throw up a lot, and it really concerned the doctor and my mom. The Chemo wasn't improving my scores but it was taking a toll on me. Each treatment I was a little weaker. Oh...(shutter) I hated it.

I would still be in a lot of pain after- the drugs simply helped me to sleep a little more.
I can't remember what they put me on, there were a couple they would try or switch around from...one was Dexamethasone (if you read down a little bit you will find it's "oncology" uses). These drugs were crazy. They'd make me do crazy things....which brings me to my "title."

My mom.

Man, I really can't even fathom what this must have been like for her. Even now being a mom and having had sick children...my kids haven't been dying or even close. sure maybe a cold that seemed to last forEVER. but that doesn't bring up the kind of emotions that one might feel with a dying child on their hands. I think only few can really ever know what that can feel like. I really hope I never have to know...or any of you for that matter.

My mom would take me to every chemo. She would put up with me being a REALLY onry sassy teenager. I mean I'm at the prime of my sassiness anyway, and on top of it I'm miserable (inside) for being sick and having to endure the next week of my life.

Those rides were hardly fun for her, I'm sure.

Then I would only become more irriated and LESS talkitive than I already was as we got into the hospital.

Sometimes we would watch a movie or a show. She might wander around the floor or hospital, get dinner. It was probably nice to leave me for a while ;)

Then I would start complaining, she would talk with the doctors about my pathetic blood work and me still sick.

Then watch me get a few IV's.

Monitor the nurses. Gotta keep them in line.

Hold my hair, help me pee, hold my hair, help me pee.
TRY to sleep.
hold my hair, help me pee, hold my hair, help me pee.
try to sleep some more.
hold my hair, help me pee, hold my hair, help me pee.

Then wait around all morning and sometimes afternoon...my being "miss delightful."
Talk to the doctors...again about the great scores and what they were going to hit me with next time.

Then drive me home. fun fun fun... haha.
Something though, the things I did on the ride really makes me laugh about some of this, and so sad. (same with my mom...we laugh about it now, but she said she would cry about it, and try to reason with herself that it wasn't me- just the meds)

All the medicine they would put me on would put in in a weird daze for that 24 hours+. I would be asleep and yet fully aware of what was going on. I can remember some things and nothing at all at the same time. SO weird. So, the nausea would still be with me the next few days after chemo and riding home in the car did NOT help with that. So although I would be drunk, I was still awake. 90% of this I don't remember, but some I do.
When driving home I would start to get nauseous and sit up and yell nasty things at my mom. (thats the stuff she would try to say it wasn't me talking it is the meds)

One that I remember so vividly was: I was trying to sleep, but every turn would make me want to vomit. So I sat up and screamed at her "STOP TURNING CORNERS!" and at the same time I came to my senses and realized how stupid I was... she can't stop turning and just go straight, I wanted to get home as bad as she did. hahaHAHA.
ok, It's not that funny, but it cracks me up. I think because- I said it when I was crazy and realized I was crazyright then an there. just call me mental.

Don't worry I have apologized to my mom. and I'm still so sad I treated her like crap. I think she understands a lot though- she is quite the wise woman. I sure love her and really Think the world of her- how could you not after all those years of sticking by my side and sticking up for me...

Elbow Pit

This one is a little out of order, because it happened at least a year after all the chemo had started.
After all the poking of needles my veins began to get weak. I was getting blood drawn sometimes once or twice a week, the usual though would be more like 2x a month. Once about 2 weeks after chemo and of course while I was in the hospital I would have it done once if not more.
Because of the abuse my veins were taking, not to mention the toxin running through them monthly they began to weaken and build up scar tissue.
For instance, I have (or had) awesome veins in my elbow pit. What is the elbow pit you may ask. haha. well Nate calls where your elbow bends and elbow pit, where you knee bend- knee pit, I guess the arm pit would technically be a shoulder pit? the first time I heard him call a knee pit a knee pit I about died laughing. What the? but now it is common vocabulary in our household.
ok now that it is explained, I HAD pretty awesome viens in my elbow pit. That was good, because I could get my arms switched off, and each arm has a couple good viens. so although they may still be poking in the same bruise- totally different vein. The would always look at my arms with great big sparkly eyes...so many choices! haha.
After a while the scar tissue builds up on the viens and it gets harder to get blood out, it makes it SO much more painful when they draw blood. The veins become weak-often collapsing and blowing up. Not fun, mainly cause they have to poke me all over again.
This happened all the time, it was not umcommon for me to have to get poked twice while trying to get blood drawn. OR or have 2-3 IV's during a chemo treatment. I became accustomed to it, I hated it, but it had to be done.
My arm would always be so sore too. the more treatments the more sore. After a while I used a brace. That would keep my arm from moving and moving the IV, and I would wrap my arm in warm towels or blankets. ahh. we all know how nice it is to pull out a fresh clean blanket out of the dryer and just snuggle- smelling the detergents. wouldn't that be nice to have those always at hand- "nurse, maid, butler, hot smelly blanket please" haha. Well although it was nice- they didnt smell that nice. more like a warewolf- if I Was a vampire that is.
ok so on with the experience. Like I said it is not uncommon for me to have 2-3+ IV's. sometimes it was that they would put one in my left hand, the vein would blow...they would go up a little past my wrist. blow or collapse, go a little further up. If that arm was done they would switch arms. You get the point. Sometimes though, I would have the IV in for a couple of hours and the nurse would come in and notice something was wrong with the fluid levels, check the IV and what do you know...it blew. so here we go again! It was really bad, I mean my dad, who is a Nurse Anesthetist and can do any IV because of profession, would always talk about putting in a more permanent one, like a PICC, so all they had to do is hook me up to that when I went down. (poor Jolyn, Krissy and Jenni, I remember complaining to you all the time about that...you probably remember, me showing off my bruises and whining...I'm so sorry!)
On this one occasion I was just arriving and they were getting the IV started. It seemed like it was starting late, because we had already seen and talked to the doctor. The nurse tried 3x to get an IV in. Keep in mind- the needle they use is "the BIGGEST one, so they can pump the fluid though you fast." I don't know what guage they actually used, but that is what the nurse told me word for word once. It was a male nurse too. why do I remember that?
Back to the story, The nurse tried about 3x. She called in another nurse on the floor who had a good rep at getting IV's. She tried twice, after the first one she said "If I don't get this one we are going to call in the IV team." There is an IV team? really? ok. 1/2 hour later the IV team finally arrived. They tried a few times to get it, no luck. By this time I was a mess. on the outside I was holding it together ok, just the type of crying where it is tears running down your cheeks- no sobbing like a child, although I wanted to- maybe throw in the three year old fit with it too. When they couldn't get it they called in life flight. LiFE FLighT? who knew. They did come in and got it on the first time, but they did it differently than the others- what they did is go into my elbow pit. They took a big hOnkin needle, said it was going to hurT and pushed down really hard and really deep, past the muscles into my deep vein. OOWWweeEIIEEe! Did you hit the bone? could have sworn I heard it crack.
so after about 7-8 IV attempts I was finally hooked up to be detoxified.
oh joy.

The First of Many

Sadly, I don't have much memory of my first chemo. They all just kind of run together in a bunch of blurrs. In my journal all I wrote was...I had my first chemo this weekend...and then went on talking about friends- who stabbed who in the back or who I was in love with at the moment. very eventful. You can tell I must have been in denial or something about the whole process. I write very little about my lupus. Of course, now I wish I would have, which is why I'm doing this. Try and fill it in a little.This is what I remember the room to look like. a LOT less colorful though.
I remember sitting on the edge of the bed talking to my Doctor.
I remember being SO offended when the nurse walked in covered from head to toe in drapes and blue feathery fabric. Here I'm going to have this stuff pulsed through my veins and she can't take it if a drop falls on her skin? wimp.
I remember after the whole treatment being so proud of not vomiting once, feeling like crap but resisting the urge to run to the bathroom. And then my doctor telling me that was GREAT hopfully you will not get to nauseous during these treatments, but it is not uncommon for you to weaken over time.
Vowed that I was going to be strong- I was NEVER going to vomit.

I made it through the first one without vomiting, but that was the only one.From then on, I did a little each more each time. Pretty soon it was so out of control they would put me to sleep for it all. Drug me really well. Not with anesthesia though- so I was still conscious and talking. waking up- to throw-up and go pee. It never really worked in stopping me to vomit, but it did help me sleep better. In fact it just came to the point as soon as we were sitting in the childish reception room I was falling asleep on my pillow. My body was shutting down, going into hibernation mode for as long as it could. I would wake up for the IV's, and to pee, throw up. I could barely hold my eyes open after a couple of years went by, when my doctor came in. It was always the same bad news anyway.

Chemo

I guess I have kind of had a writers block. After each post I can think of a new thing to write about and will think of ways to write it and those sentences will stick in my head till I sit down and write them. Very unusual for me. If something comes into my head I have to write it down right then or else it is most likely lost.
I think I have had the block more because the next things are the chemo treatments. These are harder for me to write about and describe because they were so physically painful I couldn't even relate it to those around me at the time, let alone now that it is years later and to a bunch of strangers. But I want to describe it so well you can sort of feel the pain and have an understanding. I'm in no way eloquent with words, nor do I have the best vocabulary or grammar...so I feel I don't know where to start. I also only have snip-it of memories, of different chemos, and very tender spiritual moments. how do you put all those into words? I have no idea. It will probably be many posts. but here is the start...so here it goes.

First of all- all chemo's are different and forms of treatment are different. Most people we know go in once a week for a transfusion that will take about an hour. For a day or so they eat soda crackers and sprite. They feel terrible and painful- but a lot of the time can still continue with their jobs and life. Probably at a slower pace.
The Chemo they use in most patients are really advanced-so many people don't even loose their hair. People in our ward or work maybe going through chemo and unless they tell you would never know. I know of three people- like this, one I only found out because her husband outed her in testimony meeting. What a blessing, I think, the Lord has given us this medicine. And although horrific to the person to have cancer and endure that pain it is a blessing that the whole world doesn't have to know their trial by looking at their bald head, or be missing from work a week.

Then there are the "old" chemotherapy treatments, still in use. They are very hard on the body- destroy everything. For me this is what I had to do. Here was my schedule

We would leave early from school on a Friday and head down to Utah, Primary's Children Hospital.
We would check in late afternoon. Yes, like a hotel. here is your reservation and your room number...so many times we had to wait in the room for the ladies to finish cleaning. {??}

I would be pumped full of saline, and quite fast. I would pretty much bloat like a hot air balloon. After about the third chemo I smartened up and stopped wearing my rings. Mainly because the water didn't go away for a week- and the rings would be stuck on my swollen fingers for that long. I like to take them off daily. They were probably all cheap claire ones too- turning my fingers green if wore them in the shower and stuff. This process also gave me a ton of stretch marks. On my thighs, arms, and the inside of my knees. That was really embarassing to me in the following summers when swimming with friends. Even if it was just girls camp. Because I had a LOT of them on my upper thighs. Thankfully a lot of them have faded :)

I had to pumped full of saline, because for the next 2-3 days I needed to be going pee every 2 hours. I needed to get all of these chemicals out of me fast. If they sat in my bladder I would get bladder cancer. So, I would also promise the dr, at the end of every treatment that I would continue to drink drink drink. My mom made sure of that too. water got old fast- anything else I wanted to barf.

so when I had a couple bags or about an hour or two of water in me, they would come in- covered head to toe in drapes. head- hat, body-drape, feet slippers, gloves, and glasses. In one small hand would be a small bag of it.(click on it to see wiki def-) Cytoxan.
for a little 1/2 hour it would pour into my veins, and cause me so much pain for the next week or more.

THEN, for the next 12 hours another chemical called Mesna would drip into my veins. This would bond with the chemo and exit.

The next afternoon I would leave. My mom and the doctor planned it to only take less than a day so that I would be "outpatient" and it would cost a whole lot less. ha-hospitals are so expensive, arent they?

Somethings were the same about the chemo. Arrival, smells- I would always bring my own pillow, cause it smelled like home not sterile. We would bring a lotion and body spray to help with the smells. the treatment, the doctor, the looks of the rooms. you know.
Things like the lotion that I brought were different- I still can hardly stand bath and body works plumeria, juniper breeze, and sparkling green apple. how sick I got. all that kind of stuff. so now that you know how each chemo went, I can delve into the things that were different about each chemo....many to tell, many to tell.

Here is what Wikipedia said about Cytoxan...or part of it. They said it better than me so I pasted it. I've added my own stuff in red.

Side-effects

Many people taking cyclophosphamide do not have serious side effects. Side-effects include chemotherapy-induced nausea and vomiting (CINV), bone marrow suppression, stomach acheyes yes yes..., diarrhea no, darkening of the skin/nails no, although I remember the dr checking everytime, alopecia (hair loss) or thinning of hair you already know- yes., changes in color and texture of the hair, and lethargy. Hemorrhagic cystitis is a frequent complication, but this is prevented by adequate fluid intake and Mesna (sodium 2-mercaptoethane sulfonate). Mesna is a sulfhydryl donor and binds acrolein. ya ya ya ...

Cyclophosphamide is itself carcinogenic, potentially causing transitional cell carcinoma of the bladder as a long-term complicationsee! I already talked about that :) . It can lower the body's ability to fight an infection Doctors didn't want me attending public school- because I could die from a common cold. Talk about a way to scare a girl.. It can cause temporary or (rarely) permanent sterility. Although it is used to treat cancer, it may increase the risk of developing another form of cancer phew- I have two kids..but they did warn me!, sometimes months to years after treatment.

Other (serious) side effects include:

• pink/bloody urine, um don't think so.
  
• unusual decrease in the amount of urine, over time I did have harder time going pee every two hours, although I did have a TON of water in me.
  
• mouth sores, na
  
• unusual tiredness or weakness, ya
  
• joint pain, ya ya
  
• easy bruising/bleeding,man I still bruise like a banana- but back then.
  
• stopping of menstrual periods, na- DANG!
  
• infertility na- YES!
  
• existing wounds that are slow healing. ya.