helpful information
Tips & Advice:
- Moisturize like crazy. I had terribly dry skin on my face.
- Cut your hair short. I cut my hair for many days in a row, everyday, a little shorter. I started losing my hair at my second chemotherapy appointment, 14 days after my first treatment. Once it started, it took weeks for it to all fall out. It's a mess, even when it's short!
- If you need to give yourself injections at home, reach out to SHARPS. They sent me a free SHARPS container for my used needles. All I had to do was fill it up and then return it to them in their pre-paid postage box!
- If you can afford to take off work, do it. Miraculously, I had picked up personal disability insurance the year before this diagnosis hit. IT SAVED ME. If it wasn't for my disability insurance, I wouldn't have been able to take off work, and I honestly don't know what I would've done. I am currently insured by my employer, but my disability insurance is separate, and I can keep it if I ever move employers. It's through Colonial Life, and it only costs me around $50/month. It paid out at $2000 for the first 3 months, and then $1000/month for the subsequent months (up to 9 months, since it's considered short term). It's not as much as a normal paycheck, but it got me through! I know no one ever thinks they'll need this type of coverage, but obviously that's not the case! It it totally worth it. I will most likely keep this insurance for the rest of my life, just in case. I highly recommend it. Also, I'm certain the reason I maintained such "good" health throughout this process was because I was a lazy bum for 6 months and rarely saw other people or their germs. When I first started chemo, I was still working, caught a cold and was sick for 30 days! That was the only time I was sick. Plus, the rest was so important for my brain function, as well as, my healing!
- Try to continue your work out, or do simple things to keep the blood flowing, like walking.
- Don't go crazy preparing (easier said than done). Trying to prepare for everything made me feel better in the moment, but then I ended up with 4 wigs, tons of bandanas, headbands, clippes, etc. Most of it I never wore and then I felt bad for wasting money. Try to tackle one or just a few things at once.
- Learn the difference between tumor STAGE and tumor GRADE. Essentially, the stage is the size of the tumor and whether or not it has spread throughout the body. The grade of the tumor explains how abnormal the cells of the tumor are and indicate how quickly a tumor is likely to grow and spread (agressiveness). My tumor was stage 2-3 and grade 3. The reason the stage was uncertain in my case, is because doctors don't stage the tumor until it is removed from the body. If you have neoadjuvant treatment like I did, they cannot accurately stage the tumor, because chemo shrinks it from its original size.
- Neoadjuvant: chemo before surgery/removal of tumor
- Be open to other's opinions without judgement. Who has time for judging anyway? I am not religious at all. Throughout my journey, the vast majority of people told me that they prayed for me, or would speak to me about God and his ability to make everything right, etc. I appreciated every single prayer and conversation. I truly felt a sense of comfort knowing how important faith is to others and the strength they feel from that is contagious!
- Write down EVERYTHING. Keep a running notebook with Q's & A's. Don't throw away your lists, because you may forget something and need to return to it. Record conversations with your doctors using the voice recorder on your phone. My mind was always running a mile a minute, trying to understand everything they were saying, as well as, ask all my new questions. As soon as you get home, listen to the convo again, and jot down any important notes.
- Organize all your paperwork into folders or a notebook in case you need to reference it again later.
self exam hints:
Personal experiences:
Eyelashes & Eyebrows (They fell out differently than my head hair) My eyebrows and eyelashes seemed to slowly thin out over the months of chemo, but it wasn’t until about 6 weeks after my very last chemo that they all went. ALL of them. For several days I was able to count on one hand the amount of eyelashes and eyebrows I had. Losing your eyelashes and eyebrows is weird. You just don’t look right. Either accept it, or learn do draw them (eyebrows) on and perhaps wear fake eyelashes. Within about 2 weeks, they both started growing back, so it was short-lived, but then I had a short time with stubby eyelashes and eyebrows, which also looked a little silly. Losing my eyelashes was worse for me than losing my hair! This was really the only point of this journey when I felt like I actually “looked sick.” All throughout this process, people would say “Oh, you look great!” But when your face is totally devoid of hair, you just look a little bit non-human. I found comfort in wearing breast cancer shirts. Not that anyone else deserves to know your business, but for me, it validated WHY I looked like I did and with that confidence, I rocked the shit out of no hair/eyebrows/eyelashes.
** I "re-lost" my eye lashes a second time, after they had grown back once. This happened several weeks after they grew back, so it was months after my last chemo.
Hospital Visits The biggest reason I hated going to the hospital was seeing other sick people, wondering if they were going to make it, what step of their journey they were on, or how they were dealing with their disease. I was heartbroken every time I saw someone alone, old or very sickly looking. I did my best to smile, say hi, or start a conversation with them. I tried to give and take as much advice as I could. It is a very sobering and helpless feeling walking the halls of a hospital. I’ve never really noticed it before, but it seems like everyone in there is fighting for their life just as much as I was and since I felt physically well for the majority of my “sickness,” my heart literally ached for those who were not as lucky. There was several instances where I would be sitting in a waiting room, wondering what was wrong with the people sitting there with me, thinking to myself “I wonder if that person is going to die” knowing they were just as helpless and reliant on the doctors as I was. Ugh.
Continual Issues/Frustrations- I'm still wondering what caused it. “Is it the preservatives in this food? Is it the aluminum in my deodorant? Is it because I just breathed in that person’s second-hand smoke?” I’m slightly paranoid and now take heed to things that are known/thought to cause cancer. It’s very mind-consuming, I know I will chill out a little bit over time. I know there's not anything I can do to change the past or what caused my cancer, and trying to prevent it from happening again is partially a roll of the dice, so to spend your days trying to avoid carcinogens is just exhausting. Also, if my cancer was handed down to me from my genetics, there’s nothing I could’ve done differently to prevent it anyway.
-Worrying about it recurring- I’m assuming all cancer patients and survivors have lost their sense of freedom regarding their mortality. It’s really hard to explain. Someone once described it to me like this: you wouldn’t stop driving your car in fear of a fatal car accident, so you can’t live your life fearing the inevitable, right? Wrong. It’s not like that. It is a weird sense of betrayal from your own body and something I need to spend some time trying to work through. I’m sure time will help calm the anxiety, but when you are faced with your own mortality, it will change the way you think about and enjoy living.
** I "re-lost" my eye lashes a second time, after they had grown back once. This happened several weeks after they grew back, so it was months after my last chemo.
Hospital Visits The biggest reason I hated going to the hospital was seeing other sick people, wondering if they were going to make it, what step of their journey they were on, or how they were dealing with their disease. I was heartbroken every time I saw someone alone, old or very sickly looking. I did my best to smile, say hi, or start a conversation with them. I tried to give and take as much advice as I could. It is a very sobering and helpless feeling walking the halls of a hospital. I’ve never really noticed it before, but it seems like everyone in there is fighting for their life just as much as I was and since I felt physically well for the majority of my “sickness,” my heart literally ached for those who were not as lucky. There was several instances where I would be sitting in a waiting room, wondering what was wrong with the people sitting there with me, thinking to myself “I wonder if that person is going to die” knowing they were just as helpless and reliant on the doctors as I was. Ugh.
Continual Issues/Frustrations- I'm still wondering what caused it. “Is it the preservatives in this food? Is it the aluminum in my deodorant? Is it because I just breathed in that person’s second-hand smoke?” I’m slightly paranoid and now take heed to things that are known/thought to cause cancer. It’s very mind-consuming, I know I will chill out a little bit over time. I know there's not anything I can do to change the past or what caused my cancer, and trying to prevent it from happening again is partially a roll of the dice, so to spend your days trying to avoid carcinogens is just exhausting. Also, if my cancer was handed down to me from my genetics, there’s nothing I could’ve done differently to prevent it anyway.
-Worrying about it recurring- I’m assuming all cancer patients and survivors have lost their sense of freedom regarding their mortality. It’s really hard to explain. Someone once described it to me like this: you wouldn’t stop driving your car in fear of a fatal car accident, so you can’t live your life fearing the inevitable, right? Wrong. It’s not like that. It is a weird sense of betrayal from your own body and something I need to spend some time trying to work through. I’m sure time will help calm the anxiety, but when you are faced with your own mortality, it will change the way you think about and enjoy living.