Tuesday, July 31, 2007

Thrush - It's for the Birds

Friday night, I realized that I have thrush again. I had it after my first treatment too. It is an overabundance of yeast. You know you have it if your tongue hurts and you can see white patches or lines on the inside of your cheeks.

I called and left a message for the oncologist on call, who called me back promptly which was nice. The doctor asked if I still had some Miles solution left, and unfortunately, I did. It was getting toward its expiration date, so now in addition to being foul, it was also clumpy. Oh joy. I had to swish and swallow this hellish mixture every four hours. There are three problems with this, first is it disgusting and I just don't want to take it, second it works slowly, so you keep enduring it while feeling like it is not making a difference, third it was making my stomach very unhappy. So I pretty much stopped eating and drinking over the weekend. Oh, don't worry, I nibbled and drank enough to keep myself going, but I didn't eat or drink as much as I should have or would have if I had been more comfortable.

I was willing to tolerate that for the weekend. But yesterday, I called right away to get something else. First they tried to give me Nystatin rinse. Normally, I hate pills and would prefer something topical so this would be great. But I tried that stuff last time. It is nasty and slow to work too. So I told the nurse, sorry, I flat out refuse to take that stuff. Is there a pill that I can take for this? She had to go back and talk to the doctor first, but it turns out that there is a pill that I can take. I don't know how fast it is going to work since I only took my first dose last night. But if you ever end up with thrush, I would highly recommend asking for the pill instead of the rinse. You are miserable enough already, you don't need to swish and swallow some sewage four times a day on top of everything else!

Saturday, July 28, 2007

Weebles Wobble...But They Don't Fall Down

Today is my first good day after having treatment number three last Monday. Thursday was the worst. I was nauseated, so I had to take medication for it, and the side effects of that stuff are not fun. I felt lousy and antsy at the same time. My processing was affected a lot this time too, so reading and watching movies really didn't work to pass the time. I did a lot of staring out the window (thank heavens it is summer, and there are lots of green things and birds to look at), and feeling fussy. Ooof. I'm glad that is over.

Today, I could tell that I felt better as soon as I woke up. My husband could tell right away too, he said my personality is coming back. That's an interesting observation. It is true, while I am coping with the effects of the treatment, my personality goes quiet. I spend all my time coping, instead of observing and wise cracking.

I woke up in the middle of the night last night. That isn't unusual. I often wake up because I'm having a hot flash or I'm just uncomfortable. I prefer to sleep on my side, but that does not work so well now that I have a portacath, so sometimes, I just wake up because I can't find a comfortable position. Anyway, I wandered into the living room with a book that a friend's daughter lent me. It's called something like "perks of being a wallflower". The first 45 pages were full of teen aged suicide, angst, and masturbation. I admit, there was a time when I set the book aside and asked myself "could I have picked a less comforting read?"

And of course, that set me to laughing, so I guess I did get comfort from spending some wee hours with that book after all.

Tuesday, July 24, 2007

Round #3 Down and the Frustrations of Being a Patient

I had my third treatment yesterday, and it went well, generally.

But I was reminded how hard it can be to be a patient. First of all, I have pre-meds that I take to help keep nausea at bay (Emend and decadron if you are interested). They are best taken an hour before treatment. I also have cream that I paid $50 for that I put on my portacath an hour before treatment. It is 4% Lidocain and it deadens the skin so I don't feel that hefty needlestick when they access my port. It worked great for my first treatmentk, so I know it can work.

I took my meds and used the cream at 12:30, since my treatment was due to start at 1:30. It didn't start until 2:30. Nobody kept me informed, I just got shuffled to the waiting room, where other folks much older and more fragile than me were waiting, so I was more than happy to be last in line, I figure I can tolerate it better. When the nurse finally came to me, she almost forgot to use alcohol on my port, and she took a while to cover it up after it had been accessed. Both of these procedures are important to avoid infection, and it was just a general indicator that her attention was somewhere else. She did do both these things in the end, so no harm done. And all these folks generally take good care of me, so I'm inclined to give them some slack any way.

Since my expensive cream had worn off completely, that need punch really hurt, only for a little while, so again, not the end of the world. But it is frustrating to take the right steps to avoid something, then have it happen anyway due to delayed timing. And this is the second of three treatments where this has happened.

She asked if she could get me anything, I asked for a blanket, she forgot, so my husband went and got when when I mentioned it to him. A nice lady who was there stocking the supplies got me a Sierra Mist when I wanted one, and sat around and talked for a while, and that was nice.

They did something new that I liked. Normally after treatment, I go back out toward the front door and wait in line with all the other patients so I can schedule my next appointment. That can be a little taxing if you have to stand there very long. This time, they brought me a card with my appoinment already scheduled and told me that I could leave by the back door when I was done. That was very nice!

At the end, they forgot to give me my "yellow sheet". That sheet lists the date of treatment, what all your blood levels are before treatment and the drugs and dosages that you received. You are supposed to keep a file of them, and I do. My husband went back to get it for me today. They gave him a copy of the bill. So he had to go back again with one of my other sheets for an example. I'm guessing he asked a desk lady, and maybe they never see the yellow sheets since they are done in the back by the treatment people.

This all reminds me of a lesson that I'm CONSTANTLY learning. It's kind of boiled down to be the one thing I hope to master in this life, and that is that communication is key. Communication with your family, with your friends, with your boss, with your customers, with your doctors, with everyone. Taking the time out to make sure you express your thoughts and expectations in a way that the other person understands. Taking time to make sure that if you need something from someone, you have given them enough information to go do that thing for you. Making sure that you let your boss and your customers know what you can do for them, and calming whatever anxieties that they may have.

So while I could look at the little slip ups at the doctor's office as horrible signs of the decline of our medical care in this county in general, or a sign of lack of care on the part of my doctor's support staff, or whatever general evil or malaise that I want to pick, I really see it as another chance for me to communicate clearly. And I know that I need these reminders, because this is an area where I still have lots of room to grow! :-)

Friday, July 20, 2007

Good Day, a Great Oncologist, and Be Careful What You Read

Yesterday was a good day.

First, I went in to work. I had meetings from 8:30 until 4. This is the first time that I've been back for such a rigorous day. I felt a little shaky a couple of times, but mostly, I just enjoyed sitting in a conference room with people that I like and admire, talking about work stuff. Not even thinking about how I feel or what I am going through. Sure, it was tiring and I'm having to take it a bit easy today to compensate, but that dose of normality and the wonderful distraction of it was totally worth it. My ability to keep working through my treatments has been a real lifeline for me. My boss lets me work from home and only come in when a I have meetings to attend. I still have my sense of purpose and the community that I have at work, and I have the glorious distraction of something to do that I am good at and it has nothing to do with my illness, my treatments or my recovery. It's just good old work, the same as it's ever been. And I am grateful for that strong connection to my old life and to my new life once my treatments are over.

On the commute home, (an hour), I got a little worried. I felt trapped by the stop and go traffic, and wondered what would I do if I started to feel sick or sleepy. But, that was just axiety talking, and I got through the trip home just fine. It helped that one of my friends from work called to make sure I was getting home OK. That human connection of knowing that other people care about you is so vital to getting through a health crisis.

When I got home, I had an e-mail from my oncologist waiting for me. Let me tell you why I picked him. First, he came highly recommended by my surgeon who I think walks on water. My surgeon was recommend by my OB who I have a long history with, and I also think that she walks on water too. Second, I like his manner a ton. He is passionate about what he does, and he sees part of his role as being there to support me. He is unwaveringly supportive, he doesn't sugar coat the reality, he was very clear about my choices, and side effects. He freely admitted that I'm a borderline case, and it would be a hard decision for me to choose to do chemo as "insurance" that it might stop a re-occurance, or catch any cancer cells that got loose and are circulating around right now, or skip it and trust that since the cancer wasn't in my lymph nodes, I'm OK without. He said that if I'm still doing great 10 years from now, we will never know if that is due to the chemotherapy, or if I would have been doing just as great without it. But he supports me by giving me all the information I need and want to make my decisions (and I want to know EVERYTHING), and by cheering me on when I need an encouraging word.

I had left him a long e-mail because I read another coping with chemo book, and this one's discussion of side effects scared me. I knew that I would need some higher doses of AC to catch me up to the levels that I need in three treatments, not four, and I was worried about the effect that could have on my heart. When I met with him before chemo #2, he planned to give me a regular dose of A for treatment #2, then boost the dose up for #3 and #4. I was starting to get worried that I am so tired now, how was on going to do on those two stronger doses?

Sometimes, anxiety overwhelms you when you are going through chemotherapy.

He replied back with a funny picture and many words of encouragement. First of all, he had changed his mind, I already got the highest dose of A that I need during chemo #2. He just didn't tell me. So #3, and #4 will be normal dose levels. So I've already been through the "worst" and didn't know it! I'm so relieved. I'm glad that he didn't tell me because it spared me the anticipation and worry. I know I can get through the next two easily because the last one wasn't all that bad. Sure I whine about being tired and shaky, that's because I went from being young and strong and doing anything that I want to do, to having to cope with my body suddenly being weak and having limitations. That sucks and I don't like it. But, it really isn't that bad, I can work with this, and it is light years better than all the side effects that I had with FEC. Then he assured me that my heart could easily take twice the highest dose that I have taken already. He also said that if I want to, I can take Ritalin to offset the fatigue. I'm glad to hear that I can take something if I need to, but I'll skip it for now.

So, the moral of this story is that you should still read all you want and research all you want as you go through this, but make sure that you choose an oncologist that communicates with you well and is very supportive. You will need him or her to guide you through this process, you will need to consult them often, and you will need to share your fears and worries. A great oncologist is there to help you and support you and you will need all the help and support you can get!

Tuesday, July 17, 2007

Girded Loins

Getting ready for next week which is dose number three.

I called my oncologist and Kroger's to get all my prescriptions ready. I had my sixteen year old son drive me there. He has his learner's permit and is delighted when he can get driving practice while I run errands. While I was at the pharmacy, another lady in a chemo cap walked up to get her prescriptions. My youngest son whispered to me "Look, mom, there's another chemo lady!"

I've also stocked up on rice pudding, ginger ale, Sprite, peppermint gum and frozen grapes. These are comforting foods that are easy to eat, help with nausea, and keep my blood sugar up. It is ironic that I am strongly against drinking soda normally, and now I'm rarely seen without a Sprite or a ginger ale. What else is gonna change in my life? Which other habits and preferences are going to get blown out of the water? While I know this stuff is temporary, and that I only have one more month to ride the chemotherapy train, I really resent all the changes that I've had to tolerate. Maybe that is a good thing, because my stubborness and will are fully engaged in getting my life back to normal as soon as possible. I've got plenty of will to live and determination working for me.

My cancer buddy said that she managed to avoid taking compazine by using peppermints and peppermint gum. She also fought off nausea by eating frozen green grapes. Huh. So one night when I wasn't feeling well at all (I felt so bad that I was flat on my back watching a movie with my eldest son holding my hand), I tried peppermint gum. Damn! That stuff worked instantly. Who knew?

There is so much value in talking to someone who has already been through this. My doctor is truly a nice guy, and he wants to help, but the reality is that he has not been through this, he cannot really understand what it feels like. Talking to others who have been through it gives me tons of hope because they have been through this and returned to normal for years afterward. They give you tips and tricks of things they tried that worked for them, sympathy from someone who really does know exactly how you feel, and hope because - look at them - they are fine now!

Other than that, I am drinking tons of water, exercising some (treadmill, yoga, and a tiny bit of Pilates), and trying to prepare myself mentally. I see a healer/energy worker who said that I need to stop seeing chemotherapy as a poison. I need to see it as something positive, something that is helping me, something that I want to do. I need to believe that my body takes what it needs from the chemotherapy and discards the rest. I am working on that, but it is hard to change my perception. I think she is right though, so I'll keep working on it.

Friday, July 13, 2007

You Sexy Thing

I went shoe shopping with a couple girlfriends last night.

It was so nice to do such a normal thing. We had a bit of a drive, so we got road snacks and we had time to just talk and laugh and catch up with each other. It was heaven!

It did wear me out so much that I got muscle cramps and the shakes in my legs, and I'm still dealing with that today - but, hey, the fun and the bargains were worth it.

One funny thing happened. I was in the size five aisle when this guy shows up and tells me that he is looking for shoes for his wife. OK. So I try a couple pair on, browse a bit. They he starts raving about my feet. How small they are, how much he likes my blue polish, how sexy petite feet are. He went on and on. When he left he said he had to get out of there before he lost control. That might sound creepy, but he really wasn't. He was funny. And I feel lucky to have run into the one guy with a foot fetish who could look at my bald, chemo ravaged self and use the word "sexy"! He was cracking me up and warming my heart at the same time.

After I got too tired to look any more, I found a chair and sat down to rest. I told my friend that I got a little sad when I had to pull my license out for ID because I saw the picture of me with hair. She was asking what was hard about losing all my hair. I was in the middle of telling her that the hard part was not being able to blend in in public. People stare and it just reminds me of what I'm going through, it doesn't let me just have a meal or run an errand without thinking about cancer and chemo and how I look because of it. And while I was saying those things, a lady walked over and asked me if I have cancer. She sure made my point for me. But she also reminded me of the good things that this illness brings you because the reason that she asked me is because she is a 6 year breast cancer survivor and she wanted to share her story and give me hope.

And that is what cancer gives you. It gives you all the outpouring of love and support from your friends, your family, your co-workers, and even strangers who feel moved to help and support you. It gives you hope, it gives you focus, and gives you daily doses of kindness.

Tuesday, July 10, 2007

Visit to the American Cancer Society

I already attended their make up program called "Look Good, Feel Better" a couple of weeks ago, and that is where I met a couple of great people who work for our local office of the American Cancer Society.

I went to their office today to get more doo rags. At the make up thing, they had brought some and I got a green patterned one, and my favorite one which has a pattern with strawberries all over it. I wear these every time I go out, so I wanted to get a few more. My son picked out three nice blue ones, and they also pointed out a nice green one with bamboo on it. I love these things. I wear them when I am out to protect other people from the shock of seeing my bald head, and I wear them at home occasionally when my head gets cold or needs protection from the sun.

But, when you where one in public, it does pretty much scream out "hey, look, I'm doing the chemo thing!" and sometimes the staring makes me uncomfortable. Not so much that folks are being rude or anything, it is just another reminder of what I'm going through. Sometimes, you just want to eat dinner out and not think about being sick at all, hard to do when folks are staring. So, I broke down and got a free wig from the Cancer Society today too. I tried on all kinds of things, from black bobs, to red to blonde. I ended up with a shoulder length chestnut job that looks a little bit like my old hair cut. It is an itchy thing, so I'm not going to wear it often, but it does give me a chance to go out in public without attracting so much notice, and I am grateful to be able to do that.

The other thing that these kinds folks give out for free is little cushions that attach to your seatbelt and protect your portacath. These really work. I am very short, so when I am a passenger, the seatbelt goes right across my portacath and it is very uncomfortable. Now I have two of these little things, one for each car.

Thank you to the American Cancer Society for all of their wonderful programs and support, and thank you to the wonderful volunteers to sew all the little caps and cushions.

These may seem like little things, but they sure make a difference to me.

Sunday, July 8, 2007

Busy Week and a Big Surprise

My brother came to stay with us last week. It was great to have him here. He added so much life to the house. The kids really enjoyed their time with him too.

On the first day he was here, we were standing in my bedroom, looking out of the window that I see from my bed. I was saying that my husband and a friend had planted three rows of flowers for me specifically so I could see them when I was resting. I love those flowers. My brother commented that they were on the small side. I admitted that I have not been up to watering them often, so they are not thriving. And thus began my brother's mission for the week. He set up a drip irrigation watering system for me. Not only did he put it on a timer so that I don't even have to go out and turn it on, but since he could not find the supplies that he was used to having at his home in California, he called his wife, who went straight out, bought the soaker hose that he wanted and Fedexed it to us.

What a lovely thing! Not only does the garden thrive when I am not up to caring for it, but I had the pleasure of seeing my brother, my husband, my kids, and my niece all out in the sunshine working together on this project. He also ran the system through all four of my vegetable beds, onto the planters on my back patio, and even up the middle of the patio table to water a container of snapdragons there.

A lot of my friends also made a point of stopping by to meet him. That was also very heartwarming. I have many memories now of a bunch of my friends and my brother all sharing a table and laughing.

Needless to say, I cried when he left, and we are very much looking forward to his next visit.

Throttle

My husband asked me to try to explain what it feels like to recover from a chemotherapy treatment. The best I could do is this: it feels like your throttle has been reset. Let's say you usually zip around at about 60 mph, going to work, feeding kids, doing all the things you do. Well, chemo acts like a governer that stops you at about 2 mph. Suddenly, that is all you have. You don't have the choice to exceed your new speed limit either, you just reach it and that is as far as you can go. You also feel brittle somehow. I feel like if I rapped my hand against the counter, instead of stinging, it would shatter.

Tuesday, July 3, 2007

Emend, and Decadron, and Aloxi, Oh My!

I had my second chemotherapy treatment yesterday. It was the new stuff, AC.

The first good sign was that I didn't have any reaction while I was getting the drugs. No itchy ears, no metallic taste. Nothing! I happily chatted with my brother the whole time. There was one downside, my brother and my husband came with me, and they would only allow one of them to be with me at a time! I understand they they don't want a disruptive party of ten people milling around, but I think that both my husband and my brother should have been able to stay with me. I was very disappointed about that.

When I got home, I was fine, tired sure, but not curled up in the tub with sever flu symptoms and unable to talk. What a relief! I'm doing so much better!

Today, I am very tired, but resting comfortably. I said comfortably!! I am so relieved! I have renewed belief in my ability to get through this, and that makes all the difference.