things i have learned

It has now been a full month of chemo. I still feel like I have more questions than answers...

My chemo is on a three week cycle, always on a Friday.
Week 1) Two drugs lasting 3.5-4 hrs hours (begins at 10am) usually
Week 2 & 3) One drug lasting 2.5-3 hrs (begins at 10am) usually

Then the cycle starts over at week one

I was told today that the tumor marker in my bloodwork was in the normal range. What??? 1) there is a normal range of ovarian cancer tumors in your body?? 2) if it is normal why do I have to go through 3.5 more months of this? Unfortunately, questions like this have to wait until I see the Dr again before my next round of treatments. (three more weeks as I just started week 1  of round 2) Which brings me to lesson 1

1) ALWAYS carry a small notebook and pen with you. As questions pop up write them down. Chemo brain is a real thing and you will forget to ask important questions. I may or may not have first hand knowledge of this. My chemo brain would make me forget...

2) The people you meet in the chemo pods become instant family. You share stories, supplies. Learn about silly questions others have been asked and chime in with a few of your own. The silliest question I have heard from a friend: "Are you sure you don't want to freeze some of your eggs? You might meet Mr. Right!" Yeah... I am a 41 yr old widowed lesbian. I don't think childrearing is in my life plan. I love kids, but circumstance did not allow me to have them. And that is ok :) It just means I get to spoil yours, load them up with sugar, and send them home to you. You are welcome!

3) Alopecia is annoying. Can't you just wake up one morning bald? This having a head that looks like a chess board is ridiculous! Repeated shaving of you head adds insult to injury.  And eyebrows!!!!! Seriously... losing eyebrows in chunks? Can't they manage to fall out at once?

4) ALL plans are written in the softest pencil markings possible and a huge eraser is kept at hand. I have had to cancel more things that I can count at this point. Everyone is very understanding, but I feel terrible about it.

5) Decadron is my mortal enemy. It is a steroid that I get with my chemo. Side effects include: Insomnia, anxiety, and increased appetite. Clearly three things I need in my life. sigh... it is about LIVING. I know I should suck it up and quit whining. I'm sorry...

6) Knitted hats are AWESOME for the outside and most of the time inside, but when a hot flash comes, honey you want to run outside and stick your stubbly bald head in the snow. Scarves will play a bigger part in this that I ever imagined.

7) Coloring books. You guys rock!!!! I have several coloring books and sets of pencils. I now have my chemo buddies color with me. At the end of all of this I will have a collection of beautiful artwork from my chemo buddies thanks to you! It will be a warm reminder of how many of you supported me. I am getting to know the people who get chemo the same time I do... they will be my next additions :) You guys have no idea how much this means to me. There is a verse in the Bible that God makes beauty out of ashes. These contributions (books and pencils) and the work of my chemo buddies are a huge part of the beauty He is making. So from the bottom of my heart. THANK YOU!!!!!

8) Be careful where you play cards against humanity and who you play with.  I think that is self explanatory.

9) A port does not stick out of you skin. They still have to stick you with a blimmin needle every week. Small price to pay yes, it was just a bit of a shock. I expected two lil tubes to be hanging out of my chest... one for putting things in (chemo) and one for taking things out (blood) NOPE a plastic piece of mesh like substance on my carotid... i may be over simplifying, but i was a lil frustrated when I woke up from that procedure.

10) Thank you all. Thank you for reading, for caring, for the gifts, the love, texts, emails, pms, dms, ... carrier pigeon... that was inventive. I love you guys. People from HS, college, more productions over the years than I could ever recount here. I am truly awestruck by your words and acts of kindness and love

Did I mention insomnia was a side effect of Decadron. Check out the time stamp on this entry. I took ambien at 10... it has been as effective as a life saver. Blergh. Whining again. Time to sign off...

WAIT one last thing I have learned. this one doesn't get a number it gets a ton of asterix

***********Awesome conversation starter with someone with cancer (any chronic illness really) how are you TODAY. Yesterday might have sucked, tomorrow is uncertain, but today, let's talk about that. With prognoses hanging over you head that can change in a blood test, you have to focus on getting through today. Fighting with everything you have today. Same goes for talking to a care giver. They are so used to answering  how their wife, husband, partner, friend, is doing they forget to even think about themselves. If you can do this for a caregiver... for just a few moments they are a singular person again and can speak freely about what they are going through (and it is hell too) You may be the moment of sanity that keeps them going the extra ____ hours they need to do until their loved one is asleep.

Come to my pod... seat 16... i'll show you what I mean. It is a very magical place.

How to help

My dearest friends,

Over the past few months so many have asked how they can help. I have never been the best at verbalizing what I need and I honestly have been at a loss for words. I am staying so far from most that getting a meal to me has been unrealistic. After doing some research and having my orientation to the chemo suite today I now have a better handle on ways that you guys can help. I feel so awkward asking, but I am doing as one friend challenged and just putting myself out there...

I'm putting together a chemo kit that will be used over the coming months. I start weekly treatments next Friday, but as I said these things will be useful for the next 4-5 months, so there is no rush to try and get them before next week.

1) Warm socks with tread on them
2) Amazon gift cards
3) iTunes gift cards (movies)
4) Gas cards (any station in w. mass or a generic visa - we travel approx an hour each way to Springfield)
5) Mom could use a heating pad for her back as she has spinal stenosis and the "guest chairs" are not super comfortable  Supplied!
6) Biotene mouthwash  All set for now :)
7) Burt's Bees chapstick
8) Soft tissue - I will be losing my nose hair too so will need a healthy supply on hand during a New England winter-- this will be a forever request. Bloody noses are nonstop.
9) Square Scarves silk especially needed. I will pay whatever sseems fair for you handy dandy sewing ladies.
10) Chemo buddies - people to relieve Mom every now and then and sit with me / give me a ride to and from. We can set up a meet point in Noho so you don't have to come all the way to Montague.
11) **** Most important a daily request for prayer. Please pray that I can be a blessing to the staff and other patients around me. That I can see beyond my present circumstance and share His love. ****

My chemo is on a three week cycle, always on a Friday.
Week 1) Two drugs lasting 5.5 hours (begins at 9:30am)
Week 2 & 3) One drug lasting 2.5-3 hrs (begins at 1:30 pm)
Then the cycle starts over at week one.

Finally, feel free to weigh in on the debate of what kind of wig I should get. Current suggestions range from Farrah Fawcett to a purple mohawk. Hoping for a happy middle ground.

If any one asks how they can help please pass this along.

Please email, text, or PM if you need my current address.

Thank you all for loving me through this so far! The next few months will not be fun, but the dr believes it will be a cure, so I am incredibly blessed!

Love to you all,
Lesli