Crossing the Finish Line

So, today was my last radiation treatment. Going in, my emotions were all over the place. Cancer has been front and center of my family's life since April 1st of last year. I was happy, sad, uncertain about what I'm going to do with myself now. Add the fact that the tamoxifen is now working and I'm hormonal... I was a complete mess by the time I pulled into the cancer center.

I took a few minutes to pull myself together and went in. Treatment was quick and easy, as usual. The nurses were so happy for me that I was finally done. I lost it a bit again when they hugged me, but I managed to hold it together, for the most part, until I got back out to the car. I called Aaron & Pop and cried into their voicemail. :-P

I've been doing well the rest of the day. I stopped by my gas station and was talking to the gal I usually get my coffee from about it being my last day. Everybody in the shop stopped what they were doing to congratulate me. It was unexpected and so sweet of them. Aaron took me and the kids out to dinner at Sagano to celebrate. I've been tired and the radiation burn hurts but it's a small price to pay in the scheme of things. I was told that it will take a couple of weeks to feel better and to rest for the next few days until I do.

I. AM. DONE!!!!! Woo HOO!!!

Two steps forward, one step back

I've finished chemo and am close to being done with radiation. I know that I haven't updated here in a while. It was probably pretty clear with my last post that I'd had it with the whole cancer scene. A bit self-centered and angry? Maybe. I've been focusing on just trying to get my treatment done. 

The end of Taxol was really rough for me. My stomach rebelled a lot, enough so that I couldn't go off of my meds for a couple weeks after I was done. I was weak, both in body and spirit. I lost the toenails from both big toes and have partial nail lift from most of my fingernails. It's not horrible, but not exactly comfortable either. Playing guitar has been out of the question because my fingertips have been so tender. I couldn't risk getting blisters on my fingertips because of the risk of infection. But they are starting to grow out and the new growth seems to be coming in normally and once they do, I'll again be mangling songs on my dreadnought. So YAY!!!

I ended up in the hospital for a few days before Thanksgiving with something called Celluitis. Basically, it's a staph or strep infection that gets into your bloodstream. Most people don't have an issue with this because their lymph system helps to fight it off. Because I had some of my lymph nodes removed during my surgery, that system is a bit compromised and couldn't fight the infection effectively. The infection was traveling up my arm and the doctors were afraid that it would reach my heart. They had me in the cardio ward for four days, pumping me full of fluids and antibiotics, before sending me home to be with my family just in time for the holiday.

The radiation treatments have been relatively easy in comparison. I was originally scheduled for 28 sessions. I had to get a couple of tiny reference dots tattooed on. I go in daily five days a week to get my Hulk on and as of today, I've had 22 of them. Only 6 more to go...

However, today was one more step back. Radiation is also cumulative. I woke up with my skin irritated. You know that owie feeling when your shirt rumples up while you're sleeping and puts wrinkles in your skin? It felt like that. Only, hours later, I realized the feeling was still there. I had Aaron take a look to see if it was red and he asked why I was black and blue!!! I looked in the mirror and by golly, there it was. The entire left side, where the radiation hits, is red and swollen with a dark spot about the size of a half dollar. It's not a bruise, it turns out, but a discoloration caused by the radiation.

So talking to the doctor's assistant about all this today, I also found out that I have 5 more additional treatments once I'm done with the 6. They are called a "boost" and are supposed to be more targeted than the ones I'm getting now. I'm bummed at the addition, but no sense in getting mad about it. I'll do what I need to do to keep the cancer from coming back.  I got a prescription for silvadene and hydrocortisone to put on the burn and my skin is already feeling a little better.

I have to get the kiddos to bed, so that's enough for tonight. I'll try to get back here soon.

Much love! Nik

Forgetfulness and ribbons

I have a lot on my mind lately. I know I should blog more often to let it all out, so that it doesn't become this big *thing* in my head. Maybe I should break this up into manageable chunks... Make it a little more palatable maybe? I'll just start writing and we'll see where it goes, ok?

Let's start off with where I'm at with my treatment. Next week will be my final Taxol treatment and with that, I will be all done with chemo! Woo HOO!!!! Part of the reason I haven't written is that the Taxol was cumulative for me. It was just as easy for me to write a quick note on Facebook to let everyone know I was ok.

I have gotten some of the "chemo brain" effects... Forgetting things easily. Words that I would want to use in conversation would evaporate before they reached my tongue. I sometimes forget people's names, even though I've known them for ages. Subjects that I think relate to a conversation (but end up not) come flying out of my mouth. It's so scary. It's hard sometimes to put on a smile and brave face to make sure your loved ones don't worry while you're grasping at straws yourself.

I will admit, with this going on, I used my kids going back to school as well as cold/flu season as a good reason to step away from people for a while. Granted, my immune system is weak. One of the kids brought a cold home from school and I couldn't shake it for three weeks! But beyond that, I was and still am embarrassed by my brain's occasional and ill-timed betrayals.

At the same time, I get lonely. Part of me misses the huge rally when I was first diagnosed, folks coming out to wish me well, to make sure I was ok. I'm not an attention whore by any means, but it was nice to feel that love. Now that the ruckus has died down, I get a call or a visit every once in a while. I'm not angry about it and I really don't blame anyone though. I'll bet it gets tiring hearing about cancer when you don't have to live with it. I'll be so happy when it's not in the forefront of my life anymore.

Which brings me to this tale... A few weeks ago, I was having a low day. I had recently received a couple of gifts of pink ribbons from people very dear to me. I appreciated the thought and the love that went into these gifts. I have gotten many of them since I was diagnosed. It was on this low day that I came to the realization that I hate pink ribbons. I felt guilty for that feeling and started to cry. Connor happened to be in the next room and came to check on me. He asked why I was crying. Trying to explain it to him was hard. The best analogy I could come up with is equating cancer to stubbing my toe. Everybody knows that I stubbed my toe, keeps giving me presents for and asking about my stubbed toe, and that there is a whole month dedicated to the fact that I stubbed my toe.

Please don't think that I mean to minimize all of the tremendous work that people do to raise awareness and the funds for research to fight cancer. It's not about that at all and I'll be doing what I can to help, for sure! But please don't think less of me when I say that I hate the ribbon and what it stands for. I hate that companies are using it to increase their own profits. I hated that everywhere I turned for an entire month, I was reminded of my disease.... That my daughter had to point out the pink ribbon on every product we passed in the grocery store.... That I will have to live with this reminder for 31 days of every year for the rest of my life or until they either conclude the campaign or find a cure.

I asked about this when I went for my checkup at Dr. Gold's last week. I had tried talking to a couple friends about it beforehand and they seemed surprised by my feelings. I was beginning to wonder if maybe there was something wrong with *me* that I couldn't get behind the ribbon. I got to talk with Jessica again and she explained that I'm actually in the majority here, at least among breast cancer survivors. She said that because of the campaign, there is spotlight on us and we are labeled, when most of us just want to move on and live our lives, as survivors of other cancer types get to do. I like Jessica. I feel like she gets it, ya know? Needless to say that I'm rethinking my next tattoo design.

Anyway, it's late and I'm tired (finally!). There's a lot more that I want to talk about, but it will have to wait until another day. Hopefully it will be sooner than last time.

Love to all! <3
Nik

Howdy! It's been a bit!

It’s been a while since I’ve written, I know... But for some good reasons for a change! I finished with my AC treatment and started the Taxol treatments. I didn’t have the side effects right away like I did with the first set, so I decided to enjoy what was left of the summer. I spent my time hanging out with friends, getting some much needed chores done around the house. I even managed to can a couple of things. Just a couple little treasures of summer to open this winter. I didn’t have enough energy in me to do much more, unfortunately. I’m just thrilled that I got to can something! :^D

My diet is improving a bit. It was pretty much all carbs and meat before. It was all my stomach could handle. Lately, I’ve been able to eat more veggies and fruit and have small amounts of coffee. I’m still drinking milk as a buffer for my pills, but it’s more as a safety precaution than a “have to”.

Over the past couple of weeks, I’ve finally started to get some side effects but they are nothing compared to what I had with the AC. I made the mistake of getting overconfident at one point and slacked on taking my medicine like I was supposed to. This resulted in a majority of a night spent in the bathroom losing it from both ends. I reported it the next time I went in for treatment and got chewed by both the nurse and the doc (which I totally deserved!). Needless to say, lesson learned and I won’t be doing that again! Other than that, a portion of some of my toenails dying, and my eyebrows and lashes thinning out. Neither of those are painful nor permanent.

There are some other effects that are rearing their ugly head. I felt sick to my stomach while I was getting my treatment this last time, but crackers & water helped significantly. I’m starting to get hot flashes. While not painful, they are surprising and come very randomly. About twice a week for the past couple weeks I’ve been getting some bloating in my midsection. Gas is a side effect of Taxol, but it’s like it doesn’t want to go anywhere. My tummy gets really hard and tender when it happens. Aaron has taken to saying, “Burp, Charlie! It’s the only way!!!” and “Better out than in!” when it finally does escape, which always makes me smile. The kids have finally gathered that Mommy doesn’t have to say “Excuse me” every time now, but it doesn’t stop them from giggling about it. Hehehe...

My sleep patterns have been a problem lately. Early on, my insomnia was gone as my body tried to deal with the harshness of the chemo. The fatigue has been something else. Sometimes I have to really push myself to complete a project, even something small like folding a basket of laundry. I’ll fall asleep at the drop of a hat during the day. Now, I think my body is compensating a bit and the insomnia is starting to come back. What to do about it?

As 9/27/11, I am officially halfway through the Taxol. Only 5 more weeks to go as of yesterday!!! I go to see my doc today for my check up and to see what I can do about the bloating and insomnia. Hopefully there’s an answer for that. What’s one or two more pills, right?

As always, my friends and family are helping me and keeping me upbeat. I’ve had some low points too, but it’s amazing what a hug during those times can do! I just keep on keeping on. Only 5 more treatments to go, 6 weeks of radiation, then I finally get my implants 6 months after that. Keeping my eyes on the prize!!!!

Love to all!
Nik

My Rough Days

Throughout most of this blog I've tried to write lightheartedly with humor and still get information out. Sometimes this is easy and sometimes not. A couple days after my treatments, I try not to write at all because those are my "rough days". I've decided to make an exception with this last AC treatment. It's only fair that if I'm going to write about my experience, I need to write about all of it, not just the parts that I can crack wise about.

So yes, this will probably be a downer to read, but it's important all the same.

I usually feel ok on Monday, after treatment, and for most of Tuesday. I'm trying a new anti-nausea patch*** because my doctor was concerned with how long I stayed sick after my last treatment. It takes a couple of days to kick in so I put it on Tuesday morning. My Aunt Kathy is here to help me with the kiddos and the house stuff. My pop had a trip this time around. She leaves Tuesday afternoon because I would rather spend my rough days alone than have anyone there to watch me be sick. By Tuesday evening, I begin to feel like I had a meal that was a little too spicy. That's when I know to stay on the ball with my medicine.

When I wake up Wednesday morning, I take it slow. My mouth tastes like ashes, even though I haven't had a cigarette in over 15 years. My bones hurt deep down from the Neulasta shot I had the day before. The glands in my neck are rock hard and ache. It's hard to swallow. My stomach is sour.

I have to get up and get moving. My friends are coming to take the kids for the day so that I can recover. I still have to get them up, dressed & fed before they get here though. My kiddos know the drill by now. They don't fuss or have a fit anymore. They don't argue with what I've picked for their breakfast or complain about how slow I move to get it to them. I let them pick their own clothes. We make sure to indulge with hugs, kisses, and very gentle cuddles before they leave. I miss my babies, but I don't want them to see me in pain like this. I want them to remember having fun during their summer. I thank the Goddess every day that I have friends kind enough to take them on these days.

I take my first medicine cocktail of the day: Claritin. Vicodin for the pain. Tagamet, Zoloft, & Tigan for nausea. Ativan for my nerves. Valtrex & L-lysine, because chemo can cause extreme cold sore flare-ups. A stool softener, because so many of these pills cause constipation. I have to take some mixture of these pills four times a day, everyday, but on Wednesday & Thursday is when I have to lay it on thick.

I take my morning pills with milk, usually whatever is left from my cereal. My beverage choices have narrowed considerably. My stomach is extremely sensitive. Coffee has been off the menu for more than a month now. I miss it, but I know I'll get to have it again when this is all over. Juice is pretty much a no go because of acid content. Drinking pop of any kind burns. I pretty much just drink milk & water now though. I'll add some chocolate or strawberry flavor to my milk or a little smidge of koolaid to the water to change the flavor once in a while. I know I'll probably get another kidney stone down the road from the amount of milk I've been drinking, but for now it's a great buffer. I can eat more things because I'm drinking it. Sometimes I can manage iced tea too. The cold feels good. I make sure to drink a lot during the day to keep hydrated.

Now that the kids are off, my tummy has something in it, pills are taken.... I can try to relax. The vicodin helps twofold. It not only dulls my bone pain. It helps me sleep and the more of the day I can sleep away, the faster this rough patch seems to go by.

I wake up to take my lunchtime pills and get some food on my stomach, even if I'm not hungry. Some of the pills I take can cause ulcers if I don't eat. I make sure that I eat something soft, in case I have to lose it quickly. I have to consider that for all of my meals right now. I spend a little bit of time online, usually on Facebook, saying hello, thanking people for their kind thoughts (I really do take all of them to heart!), seeing what the world is up to before I get sleepy again.

About the time I wake up, Aaron is getting home with the kids. He makes us some dinner, omelettes for him & the kids this time, plain scrambled eggs & toast for me. This is the hard part for me, emotionally. I know that Aaron is so tired after working all day and I feel horrible that I can't help. The logical part of me knows that he doesn't resent me for this, that neither of us have any control over this part of my treatment. I know that it's not forever. That doesn't stop me from feeling useless though.

We spend a couple of hours watching tv together, cuddling as a family. I give the kids goodnight hugs & kisses in the living room because I can't go upstairs. I get dizzy & nauseous. Aaron makes sure they get to bed then he falls asleep in his chair. He's had a long day. I stay up long enough to get my last round of meds in, then get us both to bed.

I end up waking up every other hour to use the bathroom because of all the fluids I drank over the course of the day. This is good because it's flushing the poison out, but I'm so tired!

We do it all over again the next morning.

I'm glad that the kids are excited to go see their friends. It's easier than arguing with them, Connor especially. He's still having a hard time with this sometimes and doesn't like to leave me. He's making it easy on me today though. :-)

I stick with my routine.... Eat, drink, take meds, sleep, do it again times three. I actually ate a whole potato with sour cream & bacon bits for dinner tonight! It's a little early to say for sure, but I think the patch is doing it's thing! Hopefully, it'll be all uphill from here. But now we have to prep for the next set of chemo meds. The doc said the Taxol should be easier than the AC treatments, but everyone is different.

My fingers are crossed and I'm hopeful.


(Many, many thanks to my Aunt Kathy, the Cox Family, & the Markel Family for their help this week! And also to all of the other families who have helped and are helping us through this! You have all been such a blessing to our family. There just are not enough words or ways to repay in kind.... With much love in my heart -Nik)

*** The Sancuso patch is what was prescribed. You can read up on it here: http://www.drugs.com/sancuso.html

Love & Coping

Ok, folks... The photoblog is still on the agenda. I'm just not well enough yet to sit in front of the computer to manipulate the pics yet. This third round has been a pain in the heiney to shake. I even got sick for the first time last night and I *hate* getting sick with a passion that knows no bounds. I'm hoping the rest of today I'll be on the upswing. *fingers crossed*

So today, I thought I'd write instead about something that is important and affects both the Cancer Survivor and everyone that surrounds them.

We are all born with a sense of self-preservation. For the Survivor, that means getting the cancer out of us, getting it treated, and hopefully getting on with our lives without it ever coming back. For those around us, it's a bit different. Self-preservation isn't just about survival. To break the word down, it's about preserving one's "self".

I warned Aaron when we first started down this road that our friends and family will react in a few different ways to our news. Some will feel a need to jump in with both feet and do what they can to help us out. (Thank the Goddess for these folks!!!!) Some won't be comfortable and will pretend like nothing big is going on in our lives, but will still interact with us on a limited basis. Some others will extract themselves from our lives altogether until the crisis is over.

Some of you may read this and think, "Dang! That's mean!" or "Some people are just so selfish!" But I totally get it. Each reaction is meant to protect that person from harming their own psyche. I understand all of these because I have been guilty of each of them over the course of my life.

We do the best with what we're given at any particular point in our lives. And with life experience and depending on the result or lack of that experience, we are given different coping mechanisms. If someone has never dealt with cancer before, has heard all the bad stories, could you really blame a person for shutting down out of fear? I can't.

So, I guess the whole point of this is to my friends and family... Go with your comfort level. I know that I am loved, even from a distance, and that I love you guys too. We'll still be good when this is all over. *hugs*

Knowledge will set you free, or at least make you feel better!

Hey Gang! I'm sitting here getting my third round of AC. Only one more of this combo to go!!!! Yippee!!!!!!

The Red Nair, as my friend Emilie calls it, finally kicked in after my last treatment and my hair started falling out. We had some fun with it. I took some silly pictures of the funny 'dos I had after pulling out the loose stuff.. I'd put my baseball cap in my lap and the kids would see how fast they could fill it with hair. We're discussing what I'm going to be for Samhain/Halloween: the Borg Queen from Star Trek, the blue chick from Farscape, Dr. Evil (or Pop can be Dr. Evil and I could be Mini Me). If I lose a lot of weight by that time, I could be a Bic roller pen! Hehehe... Connor keeps asking me every other day if it's time to shave my head yet. I told him that he & Shawni can help cut it off when the time comes and he's so excited about that.

(***THIS PART IS TMI. PLEASE DON'T READ BETWEEN THE SQUIGGLES IF YOUR SENSIBILITIES ARE EASILY OFFENDED***)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It's easier when we keep it fun, but there were some rough times too. Things were particularly rough on Sunday the 17th. Aaron had taken the kids with him to a friends house for a Poker game. No, the kids went to play with the other kids there, not to be part of the stakes! :-P

Anyway, while they were gone. I went to use the bathroom. You can imagine my surprise when I found the entire area "downstairs" was swollen and felt like it was on fire! The area up front burned like hell, felt shredded, and had blisters, while the backside was extremely swollen like I had a bunch of hemorrhoids and was bleeding pretty profusely.

I started to have a panic attack but I tried to keep some sense about me. I didn't call Aaron because he wouldn't know what to do and he was keeping the kids occupied so they wouldn't have to see me panicked like this. I did text some local girlfriends that I know, anyone who had medical knowledge, for help. Jen P just happen to be right down the street from me and she zipped right over. She helped me calm down and we looked some stuff up because she hadn't heard of this happening either. Evidently, this is caused in some cases because of all the chemo toxins leaving the body and that area's tissue being super sensitive. I hadn't seen this mentioned in any of the books I'd read. I would think that this is kind of important information, wouldn't you?

A lot of sites we looked up recommend using a sitz bath with epsom salt, but I don't have one of those. Instead, I managed to find my cleansing bottles from when I had Shawni. (Sometimes it's good to have a touch of pack rat!) I rinsed with water as cold as I could get it out of the tap and it helped with the swelling. The next appointment with Dr. Nagpal, I mentioned what had happened. He seemed kind of surprised and prescribed a cream to help (name of cream to come). It seemed to help ease the pain of the blisters and stopped the bleeding.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On the 21st, I went to Dr. Gold's office for my checkup. I got to see Jessica again and it was a lot more laid back with her this time. I think the last time she was giving me so much info and I was just so stressed with everything that I was rubbed the wrong way, ya know? She is a bundle of energy though! Wow! So, we were talking after my exam and she asked, since I was losing my hair, when I was going to be getting my wig. I told her that I was making hair pieces because the HealthPlus policy we have does not cover "cranial prosthetics". She got so mad about that! She stood up and said, "That's bullshit!!! Wait right here...." and walked out of the room. She came back with a wig for me. She handed it to me, telling me that it was a display sample that the company never came back for. I asked how much and she said it's nothing and to just bring it back when I was done with it! I put it on and it's so cute. Not my usual style or color, but fashionable! I was ecstatic!

Also, a friend of ours, Edie B, made dinner for us last week: meatloaf with green beans and rice. YUM! She even gave Aaron an extra meatloaf for the freezer for my rough days. As I recently posted similarly on Facebook, everyday I have to reexamine just how lucky and blessed I am. I have family and friends that love me, that I love just as much. I have always been willing to bend over backwards to help my loved ones. The damaged part of me is just amazed that people would be willing to do the same for me.

I planned to post a photo blow-by-blow of my second chemo treatment, but I thought that the above info was more crucial to know. I'll still try to get the photo blog up when I'm feeling better, as well as add some pix to past posts that I'd been meaning to put up.

Love to all!
Nik

*** I wrote the squiggle part, not to be gross, but because I felt it was very important stuff to know. If you are a cancer patient, please don't assume that this is going to happen to you. I just want you to know and be prepared in case it DOES happen. Everyone seems to have different things happen to them on chemo. I heard a gentlemen talking today that he couldn't handle eating Ritz crackers, but he could handle Town House crackers just fine! Dealing with Cancer and chemo can just be weird sometimes.