I Get Knocked Down…But I Get Up Again…Your Never Gonna Keep Me Down

Remember that song by Chumbawamba? Here's the link to the video http://www.youtube.com/watch?v=2H5uWRjFsGc  Great song! But I don’t think they meant for people to sing it to cancer but I do. Oh how I got knocked down. But I got up again and still kicking this cancer’s ass. It’s been a while since my last post and I have a lot to say so I broke it down into sections.

Sick…Sick…Better…ER Visit…Better…Sick…Better – Stupid Round 9
What a rollercoaster ride the past few days have been. Friday morning I woke up and felt fine. My sister and I had planned all week to take Kaia and Nolan to the lake to swim and picnic. Around 9 I started feeling a little achy. No big deal though. I just thought it was the normal aches and pains of chemo. Usually, I can just carry on about my daily activities and it works itself out. Oh foolish Crystal. We had a great time at the lake and it was actually very restful and relaxing because really all we did was float in the water so I didn’t do much. But when it got time to leave I started feeling worse. I was freezing cold and drank several bottles of water already. I just couldn’t get enough water. As we drove back home I went downhill quick. The aches were horrible and I had big time chills. As soon as I dropped off Doodle and Nolan I called Kevin. He was home shortly after we got home and I showered and went straight to bed. My temperature was at 100 degrees, not enough to warrant a call to the doctor. Saturday I woke up still feeling miserable but no fever. I took Tylenol throughout the day for the hideous pain I was in. Sunday I woke up and felt tired but good. No aches, no fever. Great! I’m better. Not so fast, there was more sickness to be had. I didn’t take any Tylenol and by mid morning my aches and pains were back along with an excruciating headache. I didn’t want to take Tylenol though because I didn’t want it to mask any fever that may come back. Fever is your body’s way of fighting infections and my doctor needs to know if I develop a fever. So I toughed out the pain. And by toughed out I mean I laid on the couch and moaned and groaned and complained about how bad I felt. Sure enough the fever came back. It still wasn’t high enough to call the doctor but since I had chills and it had been around since Friday, I called anyway. The on call doctor called in an Rx for a strong antibiotic and told me that if I still had fever in 24 hours to call back. Then my temperature started going up. It got to 102.5 and I decided I just wanted to go to the ER. I was miserable and just didn’t feel right about waiting 24 hours. Kevin loaded up the kids and Doodle meant me at the ER. They got me right in and we didn’t have to wait long at all. By this time my temperature was 102.7. I had the same doctor and chest x-ray tech from my last visit a few months ago and they both remembered me so I was relieved to have folks there who were familiar with my situation. (And the fact that they are both good looking helped too!) During the examination there were about three nurses in there and they are going over their usual billion questions. Then they come to, “Do you have any scrapes or cuts on your body.” Yes, scrapes on my knee. A nurse looks at it and says, “Oh, bike accident.” I say yes but it’s not as exciting as it sounds because I was just standing there and fell off. I see my sister shaking her head as they laugh. “Any more?” Yes I have a cut on my right foot. “What’s that from?” I cut it with my toe nail from my left foot.” Doodle says, “You really need to come up with better stories.” Anyway, after being there for a few hours and getting blood work, pee work, fluids, chest x-ray, having to keep Doodle away from the equipment and buttons on my bed, they tell me there is no sign of major infection so it is either a virus of some sort or just the damned chemo. (I threw in the damn, the doctor really didn’t say that but it would have been cool if he did.) So alternate Motrin and Tylenol for pain and fever and rest. Back home I go. They actually gave me the option to check in but everyone knows you can’t really rest in a hospital and there are sick people there, I can’t be around sick people. Plus, there was nothing they could do for me that I couldn’t do for myself at home.


Monday came and I still felt like crap. The meds were taking the edge off the pain but it was still there. No fever though. I laid around all day and then started feeling better. All right. Good deal. Which was great I was able to get off the couch because Caleb decided to walk for the first time that night!  I would have done some serious cussing had I missed his first steps. Went to bed feeling good. Then Tuesday slapped me in the face. This I think was right there with Sunday. I was miserable once again. Crying, moaning, miserable me. Called the doctor as soon as they opened but didn’t hear from them for a few hours. My oncologist is on vacation so another doctor was taking her patient calls and of course he has his own patients and was super busy. In the meantime, I tried to sleep because I was just so exhausted but the pain (and Kevin and Doodle texting me every 20 minutes, you caring bastards) didn’t allow that. When they called back I was told to keep taking the Motrin and Tylenol. My fever was at 101 something but since I was already on an antibiotic that wasn’t a major concern. Once you start antibiotics they look for a temperature .2 degrees over what the highest was before you started them. In other words they would be concerned if mine went to 102.9 or higher. They would consider that a new infection and that would be cause for alarm but this was just that same stubborn fever. I already had my round 10 chemo scheduled the next morning so unless anything changes, they would see me then. Right on. I can go back to sleep, I really didn’t want to go anywhere. On to round 10.


Round 10
Woke up Wednesday morning feeling fab! Not 100% myself, still weak but certainly much much better. I even felt well enough to drop the kids off myself. That was something I hadn’t done this whole time. Yay me! So I meet with the physician’s assistant and we are going over all of the past few days’ events and my symptoms. Then we get on the subject of the neuropathy. I’m currently taking meds for it 2 times a day and it is controlling the tingling. I mention I still get tingling but not that often but that yesterday my feet started freezing. I thought it was part of being sick but it was still there. They are so cold they hurt. She informed me that was actually worsening symptoms of neuropathy. No bueno. So she tells me on average most people only make it through 10.8 Taxol treatments before they have to quit due to neuropathy. Don’t want permanent damage. She needs to confer with the wonderful and fun Lisa (the person I normally see when doc isn’t available) to see if I can even continue chemo. She walked out of the examination room and I totally panicked. I so don’t want it to end like this. WTF? Kevin and Doodle are supposed to be there, the nurses are supposed to throw confetti at me and I am supposed to ring that bell! I’m texting Kevin like the crazy woman I am totally freaking out. You would think I would be happy to end it and I will be but this was just a shock. Kevin sent me a text that said, “Go ring that freaking bell anyway!” That made me laugh. Mainly because I had visions of the them chasing me as I ran toward the bell and them tackling me and escorting me out. They would never do that. In fact, they did tell me they would have let me ring the bell anyway but I have a very active imagination. The PA came back in and said what we will do is up the meds to 3 times a day and see if that helps so you can still have chemo today. YAY! “But we are still waiting on your blood work. Go ahead and go to the infusion room and they will get your results over there.” Off to the infusion room.


I sign in, wait a few minutes and get called back, fill up my water bottle, pick out a chair by the window and start to settle in. As I’m pulling my lap top out of my back pack Derrick (one of the nurses) yells at me from across the room, “Don’t get to comfortable woman, your white count is low, I have to check with the doctor.” Well balls. So a few minutes later he comes over and says the doctor ok it. A count of 1.5 is required and mine was at 1.4 (I have been in the 3s since I started Taxol) but since I was already on antibiotics they were comfortable with continuing. Just wash my hands often and stay away from sick folks. Done and done. Let’s get this party started, bring on the Benadryl. Another nurse comes over and starts to hook me up. Her name escapes me now but she is freaking hilarious. Always announces to everyone that I have been pole dancing when she has to come untangle the tubes from the pole that holds the bags of meds after I have been pushing it around to get more water or stretch my legs. She gets me hooked up and nothing. No drip. The tubes are broken. I say, “I think the universe is trying to tell me not to do chemo today. This is the third obstacle.” She shakes her head and says, “No Crystal, this is the universe telling me this tube is a piece of shit and needs to me changed. “ See, love her! Tubes changed, meds started, play on computer until I can’t see straight and then sleep.


Today is Thursday, almost one week since the sickness began and I feel great. Still a little tired but I’m taking it easy. I have two more treatments left so I’m keeping my fingers crossed that taking the meds three times a day will keep the neuropathy at bay.

Upcoming Surgery
Since chemo is almost done it is time to schedule the bilateral mastectomy. I meet with my breast surgeon on Monday to discuss specifics and should know more then. She does the demolition part and then another doctor will do the reconstruction part 6 months to a year after I am done with radiation. I’m starting to shop now for clothes and pjs that I can wear after surgery. I won’t be able to lift my arms for a while after so I need stuff that I can either slip up over my fat ass or that buttons up. I’m also planning a trip soon to Petticoat Fair here in Austin for post surgical bras and prosthesis. I’ve talked to some folks who have gone through it and have done some online research but if any of you have been through it or know someone who has I welcome advice. Especially about products or clothes that are “can’t live without” or “don’t waste your money”. I will update you guys after my appointment on Monday.

On another note, my hair is growing back.  I look like a fuzzy duck.  But my eye lashes are almost gone and mostly white.  Very odd.  And I have tiny white hairs all over my face.  Seriously?  Why?  I still haven't shaved my arm pits.  It's like baby hair so I'm going to leave it and see how long I can get it.  :)


Lots of hugs and a very special thank you to my fabulouso sister/best friend and my fabulouso husband/best friend for all of their help and care during this round of yuck.
Love to all!

My Date with Round Eight

Whoohoo! Round 8 is done! The cloudiness and fatigue seem to increase more and more on the actual day of chemo but with a great husband and his understanding work folks I am able to come home and rest well while he takes care of the kids after school. He's been working so much lately that his time with them as been limited so I thought of this as a little gift I would give all three of them today.  Hehe!  :)  They are doing excellent by the way. Kaia had some kind of illness this past weekend and early in the week but seems to be fine now and Caleb, well, he’s our little mischievous chunky monkey that gets into everything. What a lucky and blessed family we are!


The neuropathy still comes and goes. I was told today at my appointment to start taking two of the pills for it a day. I am going to have a practice round tomorrow after I drop the kids off at school. I normally take one at night right before bed but they may or may not knock me out so I will test them tomorrow when I am at home alone to see how that works. Stupid side effects. “May increase appetite.” Yep, that’s just what I need. I’ve already gained weight (yeah, yeah, I know better than having cancer and losing it. Whatever.) As a matter of fact, Texas Oncology just got a new computer system and is switching to a paperless system and this new system thought that it was necessary to point out that I have had a 5% weight gain since I started. I have a very great relationship with the PA and I didn’t hold back the few choice words I had for that POS computer. She of course thought that was hilarious (I was not joking). It’s not bad enough I have cancer; the computer has to taunt me with “fatty fatty two by four”? She then mentioned how unfair it is that most breast cancer patients gain weight (I looked it up when I got home and she wasn’t just saying that to make me feel better as I originally suspected.). I told her, “lost my Kaia weight, got preggers with Caleb, lost that weight and got breast cancer.” She asked how much weight I gained with my pregnancies. 50lbs with each. Yep, you heard me 50lbs. She said she can guarantee me I won’t gain 50lbs with cancer. At the rate I’m going, I just might. But I don’t think she said that as a challenge. Bastard cancer. I know it’s due to the drugs and probably has something to do with the chemo induced menopause but all of that is because of the cancer so it gets the blame. So what do we tell that cancer, Steph? SUCK IT!

So a few posts ago I briefly mentioned my beef with the phrase “lost his/her battle”. If you use this phrase please don’t feel like you need to stop or you will offend me (only big mouth computers offend me). It is simply a personal thing for me. The reason I don’t like it said that way is because I think the only way cancer ever wins is if a person lets it to break their spirit. If cancer is allowed to take over your life then yea, it wins. And I don’t mean getting sick or having sad days, I mean allowing it to break your spirit on a regular basis. We all have days when we cry, scream, cuss and get pissed off at the cards we have been dealt but then we realize “it’s how we play the hand” (Randy Pausch) and we pick our asses up and move on. And people can keep that spirit through their dying process. Many people do so on a daily basis. When my cousin’s grandmother passed away from cancer she said something like “gained her angel wings.” (Sorry if I misquoted and I am not giving this person credit because I didn’t ask if I could use her personal experience before I posted this. But trust me, she is a very wise and strong ass woman.) I like that saying and I am looking for more ways to dignify someone’s “loss of battle”. So if you have your own, please share, either in comment or a personal message to me. However you feel comfortable if you want to share at all. Below is a poem that is posted all around Texas Oncology and I am sure many cancer centers around the world. Many of you may have already seen it but it is always good to read again. I reread it every time I get off the elevator on Wednesday mornings, just as a reminder. If you have never seen it, I hope you enjoy. And I think you can substitute many of life’s bummers for the word cancer and it still works. As always, love to all.

What Cancer Cannot Do

Cancer is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the spirit.

Just Tingling with Excitment (Not really, its just neuropathy)

Round 7 is done! I’m still doing really well. My fingers, hands, arms, toes, feet and legs started tingling last night but it was gone this morning. It is a common side effect of the Taxol so we knew it was probably coming. I started noticing last week that I had trouble typing and turning pages in books so I figured it was on its way. It kind of feels like you feel when a part of your body falls asleep. That pins and needles feeling. At first it was a pretty cool feeling but after about 5 hours, it sucked! It wasn’t too terribly painful but I did notice my feet started to hurt after a while. I called the oncologist this morning like the good little patient that I am and they prescribed some meds for me that should help. The worry with the neuropathy (fancy word for the pins and needles) is that it could be permanent if not controlled. It could cause issues with doing regular life events like driving and walking. So we will test out these meds. If they don’t work we will either lower the dose of Taxol I get weekly or stop the treatments early. While stopping the treatments early sounds mighty fine to me, I hope the meds work. I want those little bastard cancer cells to die a miserable death and I don’t want them to get excited if we quit early. So if you see me stumbling around and fumbling when I am trying to pick things up, I promise I’m not drunk. Well, no, I don’t promise that but I do promise I will blame it on the neuropathy.


Love to all!