Thursday, January 20, 2011

CHEMO #3

Well, people today is the day. Anxiety galore, I don't want to do it, I am despising this whole process. I haven't slept, I want to sleep and pills don't work when your brain WILL NOT shut off.

So yesterday, I met Dr. Lee, oh how I have fallen in love with her, and she is leaving, I hate it! I didn't care for her much in the beginning but now I appreciate her.

Dr. Onwere never called her, so she has no idea what he told me, but she also felt the same, I should continue with the Taxotere, and get me through this. She thinks I won't have a reaction during the chemo, but is over 50% sure I will have a delayed reacation like before. As soon as I get a rash I have to call her to get on prednisone to try and combat it. oh god, please no. I don't know if I can live through another one. There aren't any choices but to quit, I can't quit, I don't quit anything, ever, so quitting isn't an option. So, I am counting down to next Friday when my welts will break out, I am sure. Stress and sleep contribute to break outs so my goal is to de-stress and SLEEP! I have yoga two days next week and I will take my sleeping pills and force sleep at night.

The worst reaction is my airway closing up, but I do have an inhaler for an onset, but if it doesn't help I have to go straight to the ER, do not pass go and collect my $200 (although that would help since each ER visit is $100 unless they admit me, sometimes insurance isn't good to me), and with my little working and littler money, our financial situation isn't so great. My biggest fear is being sent to collections for bills, so hopefully we are able to ward off that happening. I guess losing power, electricity and water would be bad too, but that is harder to do. Something will come along. Next month will be our hardest one. I will not quit, we will not quit, and there is an end in site, I see the light.

On another note, softball open cages has started and it was way fun to get out to the cages and talk to the girls, give them their workouts, and just laugh. I think that will get me through this the fastest. Doing what you love even if your life isn't so great, helps a ton! It will be harder this year without much time off, and my own guilt about not being at work, but I need this therapy, I think having it to look forward to and having a goal to be done before actual season start, February 28th, has been good for my healing. I have had setbacks, I should be done by now, oh well. Each time there is a setback I re-evaluate, and make another time line. Goals are good.

Keep me in your thoughts, prayers, and whatever other means you have to send positive energy to my healing. All of it has to be helping. OK, breathe, relax, you can do it, control only what you can and leave the rest. Karma, if ever there was a time to need you, now is good.

Dr. Onwere

Friday, January 14th, 2011

My appointment with Dr. Onwere, the on-call doc that needs to learn some phone ettiquette skills for sure. I am in the hunt for another oncologist for my one in Corvallis is leaving at the end of January, and my one in Portland is out for maternity leave for awhile and I need someone to follow me. Who will prescribe more drugs when I need them? Which is the most important thing. Everything else I can google and find out information.... oh the internet.....

Well, long story short, he is a good doctor and very knowledgeable, talks over me some, but we will work on that. I did have a severe allergic reaction to Taxotere, one of the chemo drugs, but we should continue with the two more to go. Stopping now really doesn't help my chances of a "cure" and they are "loading" me up on drugs to help combat another reaction. So I am antihistamines and steroids and hope I don't have the same adverse reaction as before. I am practically in tears, but there really isn't another option. Anthomyacin is one of the drugs, but being young they don't like to give it, and the chances of Leukemia are much higher after taking it, and I refuse. There is a conconction called CMF, but that is a waste of time and so we really need to stick with Taxotere....wonderful :-(

I walk out with the premise that is going to talk to Dr. Lee, my other oncologist that is still in charge right now before Wednesday when I meet with her so they are all on the same page.

Thank you and good-bye.....

Chemo #2 is NOT Done

All I can say is, "What a reaction....."

Friday, January 7, 2011
Today is going to be a great day, I can feel it. I get up earlier than I had been, walk the dogs with Jeremy, have breakfast, and jump in the shower to get ready for work. While in the shower I start to feel a little light headed, maybe unstable, just weird. Shut the water off, get out, towel off, stand in mirror.

"WHAT IN THE (you fill in the blank)!!!!!"  and then...
"JEREMY!!!!!!!!!!"

Jeremy comes flying in the bathroom, not knowing what to expect. And he looks at me. His face was scary. I had welts on my inner thighs, up the outside and around to the backside. We are talking welts, people, not just some little rash that goes away with a little benedryl, WELTS. Like I had been attacked by a nest full of wasps. It is 9:00 in the morning.

I call my oncologist immediately and speak with her nurse, Corey. She doesn't sound too concerned when I explain what is going on. I have no fever, no shortness of breath, no other issues. Just welts and intense sensation to itch. She will check with the doctor and call me back. She calls back about 10:00am, and she sounds quite a bit concerned. She says I am having a reaction to the Taxotere (one of the chemo drugs) and she will call in a prescription of Prednisone (steroids) to the pharmacy and I need to start taking it immediately and finish it out in the next five days. Also I will need to take benedryl for the itching. She says to call back if my symptoms get worse.

So much for Jeremy's relaxing day at home, he is off to run my errands. He gets back with everything by 10:30, I take my first dose of steroids and benedryl and wait.

11:30am the welts are getting worse, as in painful now, not just itchy. My body at this point feels as if it has been thrown into a fire and my skin is burning from the inside out. I am still managing, but am not comfortable. My doctor checks on me about 2:00pm and I am absolutely miserable, the welts have traveled to my face, my forearms, my hands, I am burning all over. We find that wrapping me in ice gives some relief, so picture that, literally, bags full of ice, wrapped around my body to cool off my skin. Comfortable until the ice starts to melt. I stay in bed the entire day and try to sleep. Jeremy goes to the store yet again to find anything he can to make the itching stop.

11:00pm everything is worse. My chest feels as if someone is sitting on it, my throat feels closed in as if something is lodged in there and can't get out. The welts have now traveled to the bottom of my feet and I can barely walk. I call the on-call doctor and the receptionist takes my info and tells me to call back in 20 minutes if I have not heard from the oncologist. I am miserable, practically screaming for relief, begging for the pain and itching to stop. Jeremy is dealing with me the best he can, but I am sure from his vantage point he is thinking I have gone crazy. Oh just wait.....

11:25pm no call, call back, they page again. Same routine, call back in 20 minutes if I haven't heard from the doctor. So imagine that while I am waiting (oh, how I love to wait), I am searching the internet for anything that may relate to what I have (I love the internet), bingo, lets Google 'Taxotere and Welts' and there is a forum of someone elese that has experienced the same thing, and it lasted for SEVEN DAYS! Are you kidding me, and blankety, blankety, blank. I wasn't about to put up with this for that long, there has to be relief.

12:00am the pain in my chest is awful, I can't swallow, my breathing is fine, I can't lay down for the pain is worse, my body is burning, that's it, ER here we come. Jeremy helps me to the car and we are off. In this time, no phone call from the on-call doc. Call back the number and tell him I still haven't heard from him and we are on our way to the Corvallis ER.

12:10am Phone rings and Dr. Onwere is calling. The conversation is quite funny now, looking back, but not at the time. His phone skills need ALOT of help....

"This is Stephanie," is how I answer the phone.

A voice says, and I am not exaggerating,"Uh, you called the on-call line."

Confused, I say, "Excuse me?"

"Uh, yeah, you called the on-call line, how can I help you?"

This is where I remind him what his name is, in case he forgot, "Is this Dr. Onwere, the on-call doctor?"

"Yes, it is."

Good, glad we have that established. I continue with explaining my symptoms and end with, "We are headed to the ER in Corvallis now."

And he says,"Oh, good they will be able to help you there."

"OK," I reply.

"Thank you... good bye," as he is hanging up.

He was helpful wasn't he. Get to the ER, get checked in and they get me to a room immediately. By this time, I am hardly able to walk, my legs look like hamburger, my hands are so raw from scratching and my arms are bright red. My left eyelid is covered in a welt, and my head is covered in them too, and I have landed in hell.

Doctor comes in to see me in no time and asks the normal questions. He has read my chart so he knows quite a bit about me already. I start crying and tell him I am scared, terrified really and so afraid my infection is back, and that is bad because my immune system is down and can't fight it. The tears won't stop, I am itching like mad, and I know he is thinking I am crazy.

I get an IV, they draw blood immediately and get it to the lab. He gets the breathing specialist and I do a treatment with Abuterol to see if that can help with the tightness in my chest. It doesn't. Labs come back and all my blood counts are down, I mean way down. Day 8 and they have dropped drastically. Why this is a shock, I have no idea, I mean they did tell me this happens, but to see it for yourself and knowing are two seperate things. Still shocking. the doctor still is puzzled why I am having these welts so far out from chemo and he doesn't think it is chemo at all, but I tell him it is, my oncologist said so, and the many internet forums I have found say so. He gives me another steroid, 20mg (you can have 60mg safely of prednisone in 24 hours), and decides to get an x-ray of my chest.

Saturday, January 8, 2011
3:00am I am worse since when I got there. The welts are bigger, the itching is more intense, the burning is even more intense. All my tests are coming back inconclusive but he doesn't want to send me home because he sees my agony, BUT he doesn't want to admit me to the hospital either because of my next to nothing immune system and it will harm me rather than do any good. He wants me to stay there for a couple of hours, try and get some sleep so they can monitor me. I look at Jeremy, and he is tired beyond belief, supposed to go fishing in a couple of hours, and all he wants to do is get some sleep. They give me a Zanex, and he goes to the car to try and sleep.

5:45am Jeremy comes back into my room, I was able to sleep a little, but my bed was completely up for laying down made my chest pain hurt even worse. The doctor comes in at 6:00am to check on me and things have not gotten any better. These welts are everywhere and I am in so much pain it is awful. He sends me home, and says that it should get better, but if you find you can't breathe or short of breath you need to come right back.

6:30am We leave the hospital

7:00am Get home, Jeremy takes care of the animals, and gets ice. I lay in bed, and he wraps my feet, from my knees up, my butt, and both arms in ice, gives me pain pills and some other sleep aids and apparently I zonked out, but only to wake up to more burning and itching.

10:30 Jeremy calls his parents to see if they will take the dogs so they are able to run and be paid attention to. They say yes, of course, and Jeremy leaves to bring them out there. I get up and soak in the tub with some Aveeno Oatmeal stuff. I was so on fire by this time and nothing had changed, my feet were killing me so much that I wish I could have flown to the tub. I sat in that tub for over an hour, it finally stopped, the pain was soothed, but it took awhile to get here. I did not want to get out.

12:00pm out of the tub, dabbed off the water, and put on some loose fitting clothes, and laid in bed. Jeremy got home around 1:00, and I wasn't itching yet, and decided to go to the store with Jeremy to look for more itch aids.

5:00pm we go over to some friends of ours and have pizza and wings and watch a movie. We finished the rest of one of NFL play-off games and started the movie about 8pm. I am sitting on the couch, ice on my bottom, ice wrapped around my feet, and holding ice in my hands so the itching and burning will stay at bay. And I start wheezing, gasping for air almost.

10:00pm I text Yukari, she works in the Corvallis ER and tell her what is going on, and ask if I should go back. I don't want to look like a crazy if I go back to the ER. She tells me to get there right away.

10:30pm head back to the Corvallis ER

11:00pm Get to the ER, my breathing is way worse, I am having a really hard time breathing. They get me in a room immediately while Jeremy gives all of my information, doctor comes in, orders the breathing treatment, I take one puff and it is a miracle, I can breathe. I still can't believe how amazing this stuff is. I now have an inhaler. Again, the nasty drug Taxotere is what causes all of this mess. Once the chemo is done I shouldn't need the inhaler anymore, lets hope. Yukari comes to see me and we chat awhile, and I thank her for getting me in so fast and seen.

11:30pm I am leaving the ER. And that is a record my friends. Who gets in and out of the ER in a half hour? I do.... thanks to good friends. It really is all about who you know.....

12:00am Home and in bed. More ice, things look better for sure, but I don't feel any better. Everything burns like crazy. More pills to get me to sleep. It helps and then...

5:30am That's it somebody shoot me PLEASE! This is the worst. The burning sensation is incredible. Jeremy is planning a crabbing trip and is leaving at 7am and so he is trying to get me comfortable before he leaves for the day. Um, yeah, about that, didn't happen. He was angry, as if I had begged the gods to yes, please make me miserable so my husband can't go crabbing. I want to make his life awful too. NO, why would anyone want this to happen to them. You would have to be crazy. Well we run water, I sit in the bath for a long time, then towel off, and I spray myself with medicated poison oak spray, that was a good fine.... It helps in the very short term but any relief is good. I pull on some clothes, Jeremy wraps me in ice everywhere and I litterally am focusing on NOT MOVING! Jeremy made breakfast and came in to literally feed my face so there is little movement. I take a ton of pills to just knock me out, and I sleep. I slept very well.

Jeremy kept checking on me, changing my ice, helping me into dry clothes to just get them wet, AGAIN, and I laid there all day. I got up later, took another bath, and did the whole process again. Monday was so much better, I still itched quite a bit but the burning was less...... thank you jesus! By Tuesday I was practically back to normal just sooooooooo exhausted. I still stayed in bed to rest.

My thought is NO MORE CHEMO..... my doctors have other opinions.

Tuesday, January 4, 2011

Chemo #2 is Done

Well, had chemo number 2 last Thursday, and it went OK, my veins weren't cooperating, had to stick me twice. Most people get to have ports in their chest, but oh no, not me. Since I have the possibility of an infection, there will be no port placed in my chest because of the closeness to my heart, and I will get an IV each time I go in - terrific, I say!

When you go to chemo you may as well just sign the day away. It takes forever and when I need to get an IV, it takes longer. I arrive, get comfortable, and we prepare the veins. Then once the needle gets started they draw blood to make sure you are "ready" for chemo. Seriously, is anyone ready for chemo, really? The only way you would be ready for it is if you loved the after effects of it all. The blood gets drawn and sent to the labs and you wait, and wait, and wait for the results to return.Yeah they came back and we can move on. My white blood cell count did drop to 6.5 but we are still good to go and let the chemo begin......no, not yet, really..... right, there is all the other pre stuff before chemo.

Now we have to put in the Dexamethasone (steroid for nauseau), Pepcid AC (again for stomach issues), Aloxi (anti-nauseau), and good ol' Benedryl (for any kind of break out that might happen - allergic reaction). Now mind you, this doesn't just go shooting in, oh no, there is a method and it is very slow. If you shoot it in fast you could have a reaction too, so everything is a waiting game. Thank god the chairs are comfortable. So, about an hour later we can almost start the Taxotere - the first chemo drug. That goes for about an hour and then we start the other one, Cytoxan, which takes an hour too, since going fast could give you "wasabi" nose (that is what the nurses call it because it is like when you have wasabi and your nose runs, hahaha).

So went in and was out six hours later. What a great way to spend the day.

The issues don't start right away at all. Friday, Jeremy and I got up and it was such a beautiful day out that I wanted to take the dogs for a good long walk. We walked down to Allan Brothers, had breakfast and went home - about two and a half hours later. It was a great walk, and I was exhausted, but a good exhausted. Friday night was New Year's Eve, so I went to the bull riding at the fairgrounds here in Albany and had a really good time with friends. No real issues at all, just tired, but it is an early night considering other things that we could have done. Then Saturday, I felt a little off, but really just tired. Sunday is when it hits..... your stomach is tore up, and you don't really feel the nausea, but the diarrhea is unbearable. And it is still lasting in to today, Tuesday. I tried to take the dogs for a walk and had to get straight home for my stomach wasn't having it. That is the worst part. And I know it is the food probably going right through me, but I have to eat, and so I deal with this. I think tomorrow it will be a ton better.

I am experiencing the body aches, the numb tongue, the sore fingers. This week all of the hair on my body is due to really fall out. My head still just has a buzz cut, and there is hair, but soon it will be smooth as a baby's butt - can't wait. I have also put on about 15 pounds since this started and that stinks. Fit in to nothing I own, and refuse to spend money on clothes, so it will go away once I am done, but the question is, how long will it take. The steroids cause you to bloat right up I guess, and that sucks. I walk every day, at least an hour and a half with the dogs and husband and don't stuff myself, and now I have just started back at a gentle yoga how do I gain that much?! Its common, and I have to deal with it. Lucky me.

Only two more treatments to go....... can't be over soon enough.