Sunday, June 10, 2012

Return of the tingly hands

Not quite time for my next check up yet, but I had something weird happen yesterday so I thought I'd jot it down. My neuropathy came back in my hands and less so in my feet. It wasn't painful. I still had full range of motion and wasn't dropping things. It just felt numb and tingly like my hands had fallen asleep. I'm not sure what caused it. I did miss my medicine for a couple days, but nothing I'm taking has anything to do with my nervous system. I was also out in the heat for a while (it is open house season, after all!), but I removed myself before I started feeling ill. It was still there but much better when I woke up this morning, but I think I'm going to call the cancer center tomorrow and see if they've heard of this and see if there's anything I can do about it.

Sunday, May 13, 2012

When? What do you mean WHEN???

It's been about 6 weeks since my last post, so I figure it's time for another update.

Tomorrow is Mother's Day. I know some folks probably think I'm overly sentimental about this, but every holiday I do get very emotional. That one little niggling thought pops up every single time - "I almost wasn't here for this." And then I lose it. I'm hoping it will pass eventually, maybe with a few more holidays under my belt. I just know that every holiday, every special occasion, every day for that matter, is precious to me now.

I had a quick check-up with Jessica at Dr. Gold's again. At a visit with one of my other doctors recently, he told me "And when the cancer comes back..." Yes. He used the word WHEN. No, he didn't misspeak. He said it again when I called him on it! I told Jessica about it and let her know that I was glad I was warned about his bedside manner, but that it still worried me. She was appalled that he said that and did a great job reassuring me about Dr. Gold's work. She even triple-checked me during the exam to ease my mind. I love going to their office!

My tummy troubles have been a lot better since I wrote last. I tried to go off the Prilosec once my prescription ran out again but it didn't work out. I may just have to accept the fact that the chemo messed up my stomach and that I'll have to take medicine for it to be "normal". At least things are starting to taste good again. I'm still on Ativan for the time being. The hormonal ups & downs from the Tamoxifen were causing some depression, so my doc has me taking it once a day to even me out.  Other than that, I'm taking supplements and eating more things with probiotics to improve my overall health - Ginko Biloba to help with the chemo brain. Kefir, kombucha tea, yogurt and homemade sauerkraut to help with my digestion issues. The new foods taste great! Time will tell how they are working.

I've recently been taking my mom to diabetes nutrition classes. One of the classes covered the medical side of the condition and one of the things I noticed was how many of the side effects of diabetes were so very much like being on chemo. One of the side effects mentioned was autonomic neuropathy. I had neuropathy of my hands & feet while I was taking chemo, but I had never heard that term before. Unlike the kind of neuropathy that I had, this can affect the heart, lungs, or stomach. Not that I'm self-diagnosing, but I think it might be worth asking if something like that could be the cause of some of my tummy trouble. The side effects are very similar to what I'm experiencing! If so, how do we test for it, and is there is any therapy to correct it?

Next Saturday is the survivor ceremony & breakfast at our town's Relay for Life. I really enjoyed the experience last year and I may this year as well but.... Part of me is really hesitant about going. I'm not big about putting my emotions on display. I have no difficulty writing about my feelings, but I don't cry pretty. There's a reason I don't go to chick flicks or Disney movies in public anymore! I think the Relay is a wonderful way to raise funds for cancer research. I know that many folks get great therapy from relating their stories and listening to the stories of others. I'm just trying to move myself past this and I'm really scared that going will be more like picking the scab off the wound for me rather than the healing that others get out of it. I keep going back and forth about it. I guess I'll just have to see how I'm doing the day of the event.

I guess that's about it for now. I'll post more once I go to my next doc appointment and get a chance to ask some questions. Love to all! <3

Sunday, April 1, 2012

Happy April 1st! No, it's not a joke...

Today is April 1st, 2012. For those that don't know or don't remember, today is my one year anniversary of my diagnosis. I thought I'd wait a bit after my last post to update my progress and today is as good as any, right? There's been both good and bad things to report. I'll start with the rough stuff first.

After my last radiation treatment, the sore spot turned into a pretty bad burn, blisters and all. It was expected though. The doc did brief me that it could happen, so I made sure to be prepared. I used a mixture of hydrocortisone and Silvadine creams to cool the burn and to promote healing. I have so much more empathy for burn victims now! Once it started healing, the skin turned to a Arizona/Florida leathery tan texture and began peeling, even the black spot which is now my normal color. I used Aquaphor to keep the skin moist so it didn't itch as much. (It also works fabulous for tattoos, just so you know!)

I've had a hard time with the Tamoxifen. You'd think I'd be better at it after taking all those chemo meds for so long, but it's been difficult for me to remember to take the darn things. My head still isn't quite straight, I've been suffering some depression, and my energy levels are still low. I'm thinking it has to do with my estrogen being non-existent now. (As a reminder, my cancer is an estrogen eater. So I have to take the Tamoxifen for 5 years to shut down my ovaries.) My doctor said that even if I try, I might not be able to lose any weight because of the medicine.

My appetite has been a problem too.  Things taste ok when I eat them, but never seems to satisfy me or take care of a craving. My tummy has been upset constantly for the last couple of months, even though I'm taking prilosec daily.  I called the chemo center other day because I was getting so frustrated about it. They started asking me all sorts of questions about whether I'm able to keep my food and liquid down or if there was blood involved. I know what they are worried about and it terrifies me. What if the cancer has traveled? I have burst into tears so many times the past few days because of this phone call.

But then there's the good... They put me back on the Ativan, in addition to the Prilosec, to help with the depression and my stomach. They want me to check in with them in a week to see how I'm feeling. If I still feel bad, they want to run some more tests. Better to catch it early, right? Besides, I always wanted that tummy tuck.... :^P  As of today though, I thought I noticed some improvement. Not as much nausea and things actually stayed tasting good for a little bit! I'm keeping my fingers crossed!

I'm also as determined as ever to lose my extra weight. I just have to show myself more patience. I tried going back to karate, but I think it might have been a little too soon. I got exhausted too easily and kept losing my focus enough that I worried my partner. So I think I'm going to take a step back, work on my endurance and strength training a bit. Let my body get used to this new chemical balance. I said it before and I'll say it again... I lost 30 pounds just so that I could go flip a jerk of a doctor off. Nothing will stop me from obtaining my goal. It just may take me a little longer to get there! :^D

It's been one year, Baby!!!! YEAH!!! Much love to all! :^D

Wednesday, January 25, 2012

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!!!

Monday, January 16, 2012

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

Friday, November 11, 2011

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

Wednesday, October 5, 2011

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!