I turned 30 and my hair is growing!
Hi guys!
Right now all three kids are napping and I'm laying down next to an open breezy window on a sunny warm day. This is when I nap or read or make myself something yummy, but I thought I'd get my laptop out and see what I have to share. I'm kind of "in a mood" which isn't the best time to write out my thoughts and feelings, but here we go! I want to apologize for two things. First, sorry for not updating anyone on anything for 4 months and second, sorry my blog's layout is super boring. Honestly, every post I have written I never reread or edit. I just posted and closed my laptop. I wasn't even sure what this blog looked like. I'm seeing it now and sorry! Sorry for a third time because I also don't plan on "improving" this blog. No one's got time for that!
Being my "cancer blog" for friends and family, I want to update you all with what's going on with me cancer-wise. Short answer...Everything's great! Little things here and there and definitely some life adjustments, but it's doable and we're doing well.
Long "real" answer...ugh. It's so hard. Being an oncology patient is the pitts. Harder than I thought. My life is hard. Wah! (insert a million dramatic whiney noises).
I've come a long way. During the first few months of chemo last year I would see old people and think "good for you, you're old and didn't die of cancer! GOOD FOR YOU!" and feeling negative and bitter at the injustice of it all (so dramatic, I know, but I have cancer, so...)
It's hard to remember what I knew about cancer before I had cancer, but I'm positive I didn't know much. I know I shouldn't assume everyone knows what I know now. It's been well over a year since I've been diagnosed and I still read articles and journals and "new findings" everyday. There is so much to learn and understand. It's not as overwhelming to me anymore, but it is a huge part of my life.
I think the biggest part of my update the past few months is just that-incorporating cancer to everyday life. Cancer is like, so normal, you guys! I have cancer. I will always live with this cancer. It's a part of me. It's never going away. I will be on some sort of treatment for the rest of life. I have no end date/surgery to remove my port. I can say the longer I go with my cancer....not growing (?) I can spread out scans and appointments because we know how the cancer is behaving. Does this make any sense? I have responded well to treatment, I am responding well to treatment and therefore I'm currently thrown into a "chronic disease" category.
Stage 4 breast cancer is terminal. Did you know that? "Terminal" is the scary word, not "cancer". I don't feel or think of myself as terminal so I don't use that word. I feel like it's disrespectful to those who are doing hospice or who are suffering in more ways than I can imagine. But I say terminal because I've been told this disease will shorten my life. How short? No one knows. No one knows when they're going to die, right? So I don't dwell on it. I'm not dying today, tomorrow, next week, next month. I'm very much alive! So I go back to not using the word terminal (again that feels dramatic for someone like me who is doing well living with this disease). I've met women with stage 4 breast cancer, metastatic breast cancer, who've lived 3 months and some who are living decades with this disease. Cancer isn't just one thing. Each cancer is different, each body is different. We learn more about this disease everyday and are improving treatments and quality of life.
I have a hard time explaining this to people who ask, because almost everyone that knows my journey thinks I'm done. "YOU DID IT!" "YOU'RE DONE!" "AREN'T YOU HAPPY?!"
Yes I did do it (it being the active tri-modal treatment of chemo, surgery, and radiation), so yes I am done with those things, and yes I am SOOO grateful I responded so well and I am NED (no evidence of disease). As far as I know of today, my cancer isn't growing as quickly as it was. I am so grateful and feel so lucky. Yay!
So what's with the attitude, Lisa?
Do you ever have a bad, grumpy day? That's normal, right? It's not just me? Well, I try my best not to use my cancer as an excuse, but it's hard. I feel like the side effects from my cancer treatments makes trying to do the minimal in my life extra hard. Pre-cancer Lisa had so much energy! I could multi-task 20 things and get everything done and then go for a run. I was a machine! Lisa post-cancer takes a week to do one thing. And if I try and step it up and accomplish more in one day than I'll be out for a few days.
Everyday is different. One Saturday I was so productive and felt so good! I had an appetite and I exercised and cleaned and enjoyed my family. The next day I could not get out of bed, literally. I stayed in bed until 3pm. That day I had like 800 steps on my fitbit. Yesterday I had 11,000 steps. See? How annoying is that?
This is fatigue. Real chronic fatigue. This is why we shouldn't judge others who don't look sick but are sick. It's real and it's frustrating. Do you think those who suffer with fatigue enjoy being in bed all day? Someone like me who feels the teeniest bit of energy uses it! Something I wish I would have done sooner was see an occupational therapist. I have vertigo/meniere's disease as a side effect of bad luck. It happened in November and has RUINED my recovery. I'm learning how to manage this awful thing thanks to my occupational therapist. After meeting with my OT several times for vertigo, she began to help me with my fatigue and chemo brain. Ah, I learned so much! Mentally, emotionally, and physically are the three areas that I need to relearn and build up endurance. I have to learn to think and feel again thanks to chemo and radiation. I am learning how to distribute and prioritize certain things. This is tricky because remember how I have 3 little kids? I used to be super-mom and now I need help with mostly everything. It's so frustrating. But I am able to watch and take care of the three kids by myself everyday. I'm doing more and more productive things during the day. I'm doing all I can to serve others and only ask Matt for help when I really need it. He hates when I push myself, but that's how I get better. I'm moving up in weights at the gym and I'm able to push the double stroller and go for a little run. I'm less nauseated now so I can eat more a variety of raw healthy foods than I could before and I'm really tackling a lot of "to-do" lists I haven't touched in over a year.
Ok so I think I hashed out fatigue enough. The herceptin and perjeta targeted therapy infusion treatments I've been getting every 3 weeks were going well. Really minimal side effects. Because these drugs can cause heart damage I have been getting an echocardiagram to check on my heart. The ejection fraction is what we look at, to make sure my heart is pumping at the normal percentage which is anywhere between 55-70%. I started at 65% and then hovered around 59% all last year. After my echocardiagram in February we found my ejection fraction dropped to 53%. Not too dangerously low, but still a big drop. I called and talked to my nurse practitioner to find out what I could do or what could be done and there were a few options. We decided to skip one herceptin/perjeta infusions (which was scheduled for today, ha!)
We have a fun spring summer planned. A california beach trip, yellowstone, boating, camping, we got lagoon passes, signed the boys up for sports, we are getting our backyard all set up for lots of time outside including my very own veggie garden! Life is so good. Even though I complained up there, I feel like having cancer gives me a fresh perspective on everything. I've learned to let things go, there's no time to hold grudges, who cares if the house is messy or we don't look perfect? What memories were made today? How have I made an impact or shown love to someone else? How do my kids feel today? Do they feel safe and loved? It's so easy for me to focus on those things now. Not only because I'm metastatic, but because I was "gone" during my 9 months of treatment. I missed out and so I know what that feels like and I feel like I know what I should focus on in my life now. I enjoy the mundane, the silly and what may seem insignificant, because I've learned those things are not insignificant! It's living. It's life.
I have another CT scan (chest, abdominal, pelvis) on April 5th as well as another echocardiagram to see if my heart function improved. I meet with my doctor on the 6th to see the results. I have no symptoms of cancer so my doctor expects to see another clean scan. I'm worried my doctor will want me to stop the herceptin/perjeta infusions if my heart hasn't improved. I was hoping to get 5 years out of these drugs and not just one year, so keep me in your prayers. Prayers my heart will recover and I can get these drugs again without affected my heart anymore. And especially prayers for a clean and clear scan!
Thanks for all the love and support, you guys. I know I have so many cheerleaders and people who really love and care about me. I'm glad I opened up a little on this blog. There's really a lot to this lifestyle, and I should be more open to sharing more. But one thing at a time. Keep me and my family in your prayers :)
PS. I wanted to add I turned 30 years old last month. THIRTY! Matt took me to Oahu, Hawaii. We were there 5 days and that was enough to explore a different part of the island everyday. I was proud of myself for doing so much. The only thing I couldn't do was hike, but that motivated me to go back and visit and do ALL the hikes. Grateful for the chance to go and have a carefree and relaxing vacation with Matt. Don't you think it was well-deserved? ;) We had so many fun adventures on this island, Hawaii felt like a home away from home.
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| I was so happy every time I saw a sea turtle :) |
