Tuesday, August 30, 2011

you don't know what you got 'til it's gone

I knew I had an amazing friend. I knew I had a cheerleader. I knew I had someone I could laugh with. I knew I had a travel companion. I knew I had someone who would call it like she sees it. What I didn't realize was that I had the best mentor long before I needed it.

Today would have been my grandmother's 89 birthday. She was the best! She taught me so much about life and about being independent. She taught me about hope, how at even in your 80s, you can experience good new things in life. She was a treasure to me. Tough as nails, yet delicate and precious as she grew more frail later in life.

I'll never forget one of the last things she said to me was that she is coming back as a guy because we women get the short end of the stick. Little did we know then that I too would end up with a "girly cancer".  I wish I was smart enough to keep a note pad with me when I sat next to her bed in her last days. She was spry enough even in her last days that she could have told me all her best tips. But I didn't know that I would walk the path she walked. Don't get me wrong, I don't regret the time I spent with her. I soaked up every bit of joy that I could from her. I guess I just still wish she were here to tell me how to do this. I'm doing the best I can learning from her example.

You never know what it's like to undergo treatment until you do it yourself. Even watching someone you love with your whole heart doesn't give you a real clue. I pray that no one reading this experiences it. It's just not fun. It will be ok in the end. I know that, but the road it takes to get there is frustrating, bothersome and exhausting. About the only thing you can do is keep on walking, and take a nap when you need one. If you keep walking, and distract yourself in the meantime, you make progress without realizing it. For the journey of a thousand miles starts with a single step.

Monday, August 29, 2011

weathering storms

We all encounter storms in our lives: figuratively and literally. Many of us did so in the past few days. I personally went into this weekend terrified: chemo and a direct hit hurricane did not sound like a good combination in my book. Either one on their own was probably doable, but throw them both together, and daunting wasn't sufficient enough of a word to describe it.

But I am grateful to say, I survived.

There are many of my loved ones out there who struggled through various storms this weekend as well. I am saddened by the fact that I can't be with them to help them through, but I hope they know in their hearts that I love them.

At the end of the day, we will all persevere, but sometimes the ride gets crazy, and it feels impossible to keep hanging on. Sometimes, when it rains, it pours. Literally. We keep digging deep for our strength and we usually can find it. Being strong can get exhausting, especially when we fight multiple battles on multiple fronts. We just have to remember that no storm lasts forever. The sun always finds its way through the trees, and sometimes we even see rainbows. But the only way you will see them is if you keep your chin up.

Friday, August 26, 2011

Round 3: ding ding ding

I'm thanking God that I was well enough to receive my third infusion today. I didn't want to delay because I want this all behind me, and I also want to maximize my chances for success. Keeping them two weeks apart typically has the best results. I am all about that.

So I am happy to report that the bloodwork cleared me for treatment. And the best part is, I only have one more round of AC to go. Oh how I hate that combo! My doctor looked at me sympathetically and said, "Don't worry, you will like Taxol much better. Hang in there." Oh I am hanging alright, by a thread, but I'm hanging.

Today, when I realized I only have to watch them pump that crazy red poison into me one more time, I felt like I'm finally making progress. There is a light at the end of the tunnel. I think I can, I think I can.

Wednesday, August 24, 2011

Not all side effects are bad.

A quick medical update: while I had another fever last night, it stayed low-grade which meant that I got to stay home. We'll chalk that up as one in the win column. Today, I heard that my blood cultures are all still negative which means it was either viral or just a random side effect of the neulasta shot. Either way, as long as it gets better, I don't care. Fingers crossed that the fever stays away again. Tonight is the first night since Sunday that I am completely fever free! Yippee! 

It's getting too close to treatment now to screw around with complications. They will decide on friday if I am well enough to have treatment. I know that the treatment is most effective if I can stick to the every two weeks cycle. So I'm just thinking healthy thoughts and praying for the best.

One nice side effect is that I am noticing my son is learning compassion and kindness at an early age. Today, he wanted to look under my hat. I told him that I cut my hair to look like Daddy's and let him look. He rubbed my peach fuzz and smiled. Then he gave me a hug amd said "I really love you Mommy". I am hoping this whole experience leads him in a positive direction. I hope that he learns to be kind when others aren't feeling well. I hope that he learns not to judge others by their appearances. I hope he learns to never quit no matter how hard things get in life. I hope he learns to love what's inside people, and not worry about hair or other such superficial things. I hope he just grows up to be a wonderful, compassionate, strong person. Now that would be a worthwhile side effect!

Tuesday, August 23, 2011

chemo rocked my world

Ok, maybe that was the earthquake. You know you have been through a rough road when your first thought while experiencing an act of God is "wow, is this another chemo side effect?" Yes, that happened.

The last few days have been challenging to say the least. 

Sunday night started the latest craziness. I have been in hospital twice since then due to fevers, including one trip in that monsoon sunday night. I have had lots of bloodwork done that give us very little clues as to what's causing my fever and extreme fatigue.  But here's hoping it's under control now. Time will tell. Waiting to see how tonight goes since it seems to happen later in the day. 

I was at my wits end going to the hospital, especially the second time. I was scared, tired, and felt crappy. Not a pleasant combination. But, I was able to go home both times. The good news is that my blood counts are staying strong. That's the main concern. They keep checking to see if they drop because then infections become more dangerous. The sucky part is, you can't take tylenol or anything when the fever comes on until they assess you. I know it would make me feel better to take it, so it's frustrating to know I can't. 

However, as always, Steve and I did find things to laugh about, even in the ER. For example, the fact that we were watching wedding crashers, and the nurses only seemed to check in at the most ridiculous scenes, like when the crazy brother sneaks into the bedroom. We found it amusing to watch them try to keep a straight face, with the movie in the background. We eventually took it easy on them and muted it when they came in. 

Here's one nice plus about being a cancer patient. When you get sent to the ER, you get a private room. Trust me, that makes it much more pleasant! They want to isolate me because of the compromised immune system, and we get a much more peaceful experience.

Truth be told though times like this are so trying. The second round of the chemo was much harder than the first. The odd complications were harder to manage. I hope we have a handle on them for round 3. Oh how I long for Taxol. Isn't that a sad statement? 

I was planning on returning to work yesterday. That didn't happen. It's so very frustrating to be limited. I look forward to the day when I can be myself again. I miss my normal life, being strong and feeling well. 

I have been brushing up on the book of Job lately. Much like Job, my faith is rocked and I question, but I still have that faith. I pray that doesn't mean I am going to keep getting tested. I have had quite enough, thank you!

Friday, August 19, 2011

new directions

(Yes, the title of the post today inspired by Glee. Steve and I never paid much mind to it until lately, now we are junkies.)

I have always felt held that positive outcomes can come from the most dire situations. This week has been a reminder of that. Chemo weeks are truly dark. They are demoralizing. They are frustrating. They are uncomfortable, and they are painful. Needless to say, this week met the expectation of each of those. It's a roller coaster of sorts. You know to expect the nausea and fatigue, and eventually, you get past that. Then the other funky side effects pop up: the hair loss, digestive issues, pain, and the frustration of having to live with those effects.

Mid-week was particularly dark for me, chemo-wise. I dealt with a lot of physical challenges that wore me down. But several things happened. First, a new life. My precious nephew joined the world. A beautiful new beginning, full of promise and hope.

Then someone posted a comment on by blog (remaining anonymous, although I have my suspicion as to who it was). The comment was unbelievably timely. After having spent a solid 16 hours feeling hopeless, and struggling with why God has challenged me so, the comment came through. This is what it said:
"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access to this grace in which we stand, and we boast in hope of the glory of God. Not only that, BUT WE EVEN BOAST OF OUR AFFLICTIONS, KNOWING THAT AFFLICTION PRODUCES ENDURANCE, AND ENDURANCE, PROVEN CHARACTER, AND PROVEN CHARACTER HOPE, AND HOPE DOES NOT DISAPPOINT. Romans 5:1-5" To that person, I say thank you. The timing of your comment came when I was running thin on endurance and very much in need of hope myself. 

The third thing that happened was perhaps the most personally fulfilling. I received an email from a manager at the Cancer Support Community, the parent organization of the Wellness Community. I had recently registered with the organization as a breast cancer patient for their research on how the mind affects the physical in cancer treatment. As such, I shared with them some of my experience thus far. The reason they contacted me is that they want to spotlight me in the Everyday Health's Cancer Care newsletter! They want me to tell my story about my experience with breast cancer, as well as how the Wellness Community has affected my treatment. I have to admit, this is such an amazing opportunity for me. From the beginning of this journey, I have felt a calling to help others, to inspire them. To have a formal outlet recognize this and want to share my story is truly an unbelievable compliment. I am truly grateful for this blessing. Perhaps this is just the beginning of a new purpose in life for me, a new chance to turn what I have been given into a chance to make someone else's life better by giving them hope. To have that opportunity to do so on a broader scale is just an amazing feeling. 

I close today's post with this thought from Ralph Blum: "The obstacles of your past can become the gateways that lead to new beginnings."

Tuesday, August 16, 2011

volumizing? I think not.

It's amazing to me how well-studied my cancer is. The treatment protocol is practically routine. And of course, it's also reassuring how well my medical team knows what to expect and has prepared me for each passing hurdle.  

For example, they knew to the day when the major hair loss wave would hit. Before I even started chemo, my nurse told me today would be the day. She was right. I was fairly ready for it to happen. First of all, as it was starting to loosen up, it hurt! She warned me of that too, and she was right. It was horribly uncomfortable for the past few days. It feels so much better now. While this might sound twisted, I was cracking up in the shower today. I found it wildly ironic when I realized the shampoo I was using to help scrub out my short pathetic hair from my scalp was a "volumizing" formula. I was literally laughing out loud at the ridiculousness of the moment. I thought about sending the company a picture and telling them I was going after them for false advertising! Could you imagine? Ok, I'm not that cruel, but the thought made me chuckle.

All joking aside, it was a bit of a tough pill to swallow. Having no hair makes me look sick. But that's why I have my hats and wig to cover that up. I just have to remember it's not the end of world. As it was all coming out and flowing down the drain, (sorry mom and dad, you might need draino) I just keep thinking "This is how you beat cancer. This is how you win". If it kills cancer cells the same way it attacked my hair, cancer doesn't stand a chance. I am finally starting to feel cancer-free. My mind is starting to believe that the demon is packing. As awful as chemo is, it's worth it. 

I'm not going to lie, chemo is hard. It's exhausting and demoralizing. I cried in the doctor's office yesterday for no other reason than because I just felt worn out and beat down. In that moment, I just didn't have the energy to be strong anymore. But that wave eventually passed, and life goes on. 

I have to repeatedly to get my head around how important it is to regroup and drive on. It's an uphill trek, but on the other side of that mountain is a gorgeous view and a beautiful life. So I keep on going, hard though it is, because I am a survivor and I don't have a choice but to win. I am a mom and a wife, a daughter, a sister, a cousin, a niece and a best friend. I am doing this for all of them and more selfishly for me. I am determined to beat this and to continue to inspire others. In my mind, there is no other option. 

Sunday, August 14, 2011

Surviving Round 2

Today is the tired, useless day, so I figured I would get the post in before my energy completely hits the floor. Yesterday was good. My energy was decent, I was mostly able to manage the nausea.  During the night, my stomach was a bit off, but not terrible.

On top of all of this, my hair is really starting to come out now. I am so glad I buzzed it when I did. Makes it a lot easier for it to come out in short pieces than if it were long ones. Now I just walk around, feeling like Charlie Brown's Christmas tree with the little pine needles sprinkling down. I am wearing hats to help collect it. Ah the fun.

I'm finding though that I am making it ok. I am surviving it, and can still laugh and smile. There is hope in cancer. Especially as I take down more and more milestones.

Friday, August 12, 2011

2 down - 6 to go

Infusion 2 is complete. It went well. I feel hung over. Too bad I didn't get the good party first. My blood work was great. It showed that I tolerated round 1 very well. Always the overachiever, what can I say? I am too tired to post much else tonight, but I will leave it with this thought (which is my Facebook post for tonight.

‎"Do not pray for easy lives. Pray to be stronger. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle but you shall be a miracle" - Venerable Solanus Casey

Round 2

Bummer that it's on Mom's birthday, but I kind of see it this way. I know that as a mom all she wants is for her kids to be happy and healthy. So, in some ways, maybe is a good thing. I am spending my day getting healthy, so I can celebrate many more of her days with her. 

Love you Mom! I wish there were enough words to thank you for everything. But I know you already know. I hope your day is as beautiful as you are. 

After today, I will have received half of my AC part of the regimen already. I have a feeling this is all going to go by so quickly, and soon it will be a memory. More like a crazy dream. 

Please say prayers for me that all goes well and that the weekend is about the same as last week. I am going in sporting my pink butterfly baseball cap and wearing makeup. I will face chemo with my head held high. I won't let it get the best of me.

Wednesday, August 10, 2011

G.I. Jane

Well, I did it. I took the plunge and buzzed my hair. As Jackie called it, "I embraced my inner GI Jane". Rather fitting for a girl in battle, a warrior in pink.

Carol came down this evening to do the deed for me. We both handled it well. I didn't cry until much later when I was taking a shower. Having so little hair for the shampoo stung my heart. It was one of the times where I really allowed myself to shut down the strength for a bit and just let the emotions pour forth. It was time to mourn the loss.

It's amazing the dichotomy of emotions that came along with tonight's activity. On one hand, I feel embarrassed and self-conscious. On the other hand, I feel empowered and like a goddess. I am angry and hurt that I am forced into this hair loss situation, yet I am proud of myself for taking the bull by the horns and not leaving it to happen on its own. This is truly one of the most devastating parts of cancer because it's the one that forces me out of anonymity and into the spotlight as a cancer patient. There is no denying it now.

There are a few interesting discoveries that come with having no hair. First off, I really look like my brother Frank. I had no idea, but I have his same head shape and hair line (well, at least for now until it all comes out). Secondly, my eyes are kind of cool. They can stand out on their own with their warm brown color, and don't need hair to bring them out. Thirdly, so far, my little ski cap is the currently the most comfy of my head covering choices. I need to stop crocheting that blanket and get to work on some cute little hats. And finally, I need some cute dangly earrings to help spruce things up a bit. Time for a little shopping I think.

In all honesty, this was one of the toughest hurdles emotionally to date. But I did it. Now it's time to move on and not look back.

Tuesday, August 9, 2011

Feed your faith and your fears will starve.

I found this quote last night while reflecting on my situation. It resonated so clearly with me that it inspired its own post. It's so easy to get caught up in the rip current of fear when you are fighting cancer.  One negative thought fosters another and it's slippery slope. I have been working on controlling the thoughts as they were running away fast and furious lately. It is so counter-productive, but apparently very common in cancer patients. Someone told me yesterday that it is ok to view my diagnosis is a trauma. She's right. I often overlook that it's a big deal, but in fact, it's a huge one. However, becoming a cancer survivor is a bigger deal, the very thought inspires me.

What I have found about treatment is that it can push you to your limits. It is equally taxing physically as well as mentally. The best analogy I can use to describe the treatment is to compare it to the dementors in the Harry Potter books. It literally feels like it is sucking the energy and happiness right out of you. The only way to combat that (much like the book) is to drum up your very own patronus charm. It's not easy, but you dig deep and pull out every happy thought you have, and you can defeat that demon. It takes strength to remain positive. I find it odd because being positive is something that usually comes so easy for me. So I guess this is much like "Advanced Placement Positive Thinking". Well, if could handle Sr. Ann's AP History, I guess I can handle this too.

There is much hope in cancer, especially breast cancer. It's certainly well-studied, and very often treatable. And new developments are happening all the time. In my case, according to my oncologist, I should be just fine. Given that, there is no logical reason for me to be afraid. Unfortunately, cancer doesn't dwell in the land of logic, so it requires extra effort. I have made it through enough of a chemo cycle to know what to expect and to know it's something I can survive. Radiation should be a walk in the park compared to everything else, so my real focus is getting through the next 7 rounds. When I think about it, I have to believe the worst is behind me. There is a bright pink future ahead!

I have to remember there are so many wonderful survivors in my world. I am believing and hopeful today that I will beat this. I have my survivor shirt. I am just waiting for the right time to wear it.

Monday, August 8, 2011

What cancer can do.

I have seen a verse called "what cancer can't do".  I'm not going to include it here but I want to take the idea and bring it in a slightly different direction. It's beautiful and I encourage you to look it up.

In my experience, here is what cancer can do. It can help you realize what's important in life and what's not. It can make you savor the little moments you might otherwise not have noticed. It can make you take care of yourself because you realize how fragile, yet important good health is. It can make you realize how lucky you really are. It can make you appreciate all of those who were science-minded and pursued either research or medical studies because they are the cure.

Cancer has made me appreciate every day. It has turned me into a fierce fighter. It has made me add even more pink to my wardrobe. It made me a writer and future patient supporter. It inspired me to take up crocheting, which is incredibly therapeutic and apparently something I am good at. It sparks creativity in me as well as in my co-survivors (p.s. co-survivor is the friends and family who go through the hell with you. Who would have thought that Chris would be a song writer?). It has inspired me to "pay it forward" and find ways to help others in whatever way possible. It has reawakened my long-sleeping charitable side. It has made me learn things about myself that I might not have really paid attention to. It has given me another real reason to be proud. It has made me aware of my strength, and taught me to tune into my weaknesses so I can work to bolster those as well.

Cancer can help families realize how special and blessed they are to have each other. It can make parents realize how strong their children are. This goes for me as a parent too. It can help friends remember to appreciate one another, and can even rekindle old friendships that have drifted apart, swept away by the current of life. It can make people reassess their lives and even provoke them to reconsider paths they have chosen, and realize it's never too late to change direction. After all, who knows, I may just become a published author one day.

Cancer can make you fight like a girl. Have you ever seen a girl really pissed? It's brutal. And I, for one, will keep on fighting. There is no other way. I have too much to live for. 

Sunday, August 7, 2011

a good day.

Today was the first true all around good day. I think (ok, I hope) I finally got a handle on the stupid little side effects. Took a little over a week. It's funny how minor things seem magnified when viewed through the eyes of cancer. 

Having spent the weekend amongst friends and family was a huge lift. It does help to surround and distract myself. Unfortunately, the "pink elephant" in the room inevitably comes up in discussion these days, but it isn't all about that. 

On that topic, a huge thank you to my friends and family for your support especially this weekend. Thank you for listening to me talk about weird topics. To my personal case manager, thank you for going above and beyond the call of duty in helping me with problem solving. You have gone beyond what any sister-in-law should ever have to do. Please know how much it's appreciated! 

Also, thank you to Steve for never making me feel badly for putting a damper on your birthday weekend! You are unbelievable. I'm very lucky.

And thank you to my sweet boy for just being an angel (ok aside from the haircut debacle. Sorry again Carol!). He fell asleep in the car on the way home. When I carried him into his room, he woke up just as I was putting him in his bed. He then said to me "you're the best, mommy!" and gave me a kiss goodnight. Ah my precious child!
As for what lies ahead in the near future, I am likely buzzing my hair this week. I only have a week or so before it all goes, and it's just easier if I take matters into my own hands. That's not going to be fun, but I just have to get through it. It's just one of those "rites of passage" for cancer patients. I know at some point in the near future I will be ok with it. I just need to bite the bullet and charge ahead. It sucks, but there's not much I can do about it.

Aside from that, here's hoping and praying God takes it easy on me this week. 
 As of now, no other doctor's appointments scheduled for this week. We will see how long that lasts. Round 2 comes friday.

Then there will be 6 to go!

Friday, August 5, 2011

Unexpected boosts.

It's funny how sometimes we get the boosts when we need them the most. And even more funny how they appear to come at random times from random places. There are some that come from obvious places on a regular basis (such as my family and closest friends), and while those are so important and very much appreciated, the random ones sometimes have an even greater impact.

Today, I had two random events that lifted my spirits on a day when I really needed them. Although I am certainly feeling better than last weekend, I am still living with the havoc chemo wreaks on my body. There are so many little odd effects that linger, and they are frustrating, even if they aren't the major, notorious ones. I was struggling with feeling like I will never feel like myself again. I wonder sometimes if I will ever feel completely well. That was the overwhelming emotion of the day. (Which sucked because it put a damper on Steve's birthday. I owe him big next year).

So this morning, my DZ big sister forwarded me information on "the pink daisy project" (funny enough, another dear friend sent it to me as well an hour later). What a great organization! I highly encourage you research it. Anyway, she said she forwarded it to me because the founder reminded her of me, with her attitude and approach. You have no idea what a huge compliment and a boost that was to me! Thank you Stace!

Then, tonight I received an email from a friend who I met through an online wellness community years ago. She lives hours away and while we have chatted on and off over the years, we have never met in person. She told me she is doing the Komen 3 day and wanted my permission to do it in my honor! She talked about how she is impressed by how I am fighting the battle, and wanted to use the walk to represent me. I cannot tell you how much this meant to me! Here's a girl who doesn't know extremely well but she was just moved by my fight. How inspirational this? I wish I could explain it to you. Think of the warmth filling a hot air balloon to lift it off the ground. That's probably the closest decription I could give.

Sometimes, when you feel just beat down, God surprises you and sends you angels to lift you back up.

Thank you to everyone who has been so supportive, loving and kind! You have no idea how much impact it has on a girl who just gets plain old tired sometimes!

Thursday, August 4, 2011

Coming out of the fog

The last few days have been a bit of a fog. Chemo just messes with you in many ways. Even though it hasn't been a long period time since chemo started, sometimes I start to feel like I am never going to feel normal again. There is some good news though. I figured out that I can survive it, which is good. I don't like it, but I can survive it. At the end of the day, I know I will look back and it will be worth it, but it's not fun in the meantime.

Before I go on, it bears mentioning that my personal case manager was diligent enough to point out a flaw in my original post. I not only survived my first round of chemo, I did so without throwing up! She said I should take props for that. I had a few near misses, including me screaming at Steve to park the car in the Bertucci's parking lot before I threw up, but I was able to regroup and keep the contents of my stomach in place. 

A few tips for any future chemo sisters regarding nausea management:

  • Never leave your house without your zofran. Nausea can sneak up on you anywhere.
  • When in doubt, eat something bland and carby. 
  • Do NOT eat anything spicy or highly acidic. This will result in no sleep due to severe heartburn. 
  • Make friends with pepcid. It will save your life and your insides.
  • Don't think you can run on an empty stomach. You can't. It's a different ball game now. Eat small frequent meals or you will feel like crap.
Ok, enough about the stomach issues. I had the neulasta shot on Monday. Contrary to chemo, I barely had any side effects which was a pleasant surprise. Even better than that, I had blood work done on Wednesday that showed it was working because my blood counts were great. Let's hope it stays that way. Let me explain about neulasta. Chemo attacks all rapidly dividing cells which includes good stuff like white blood cells. Neulasta helps replenish them which is important since they play a critical role in keeping me healthy and fighting infections. Needless to say, the fact that it is working is very good news!

On a positive note, I channeled my boredom of being stuck with zero energy into something productive. I am teaching myself how to crochet. I have to say my first project is coming along swimmingly. And once that's done, I bought "pink camo" yarn! I need to make myself a cool "pink warrior" something. Maybe a hat since my head is going to be cold soon.

Tomorrow will be a happy day. It's #1, Steve's birthday and #2 a friday without chemo! Two fun things to celebrate!

Fifteen weeks to go!