Saturday, February 6, 2016

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.

Friday, January 8, 2016

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,

Friday, October 30, 2015

So many questions so few answers

I have been inundated with emails, texts, phone calls, pms over the past few days. I thank you for those who have made me laugh and those who expressed your concern and love. To answer a surprisingly popular question, no i do not have prostate cancer... i'm not THAT butch. (yet, give me time) I have endometrial cancer, it has not been staged yet, it is graded 1 which measures aggression and is the lowest classification. My OB told me if I had to get cancer this is the one to get. I was waiting for the jazz hands to finish off the punch line. I see an oncologist, who will be doing the surgery, 11/13 in MA for a prelim meeting. Rusty and I just got into TN and are going to be spoiled for a couple of weeks before I head back to MA. Mom will follow when I have a surgery date. That is pretty much all I've got.

I am doing great, more nervous about the surgery than the cancer. Anesthesia is not my friend...

hugs and mushy stuff to everyone

Tuesday, October 27, 2015

Psychological leaps

It is odd to me... the psychological leap that happens between certain statements. Naturally, one event is jumping out at the moment... the leap from a dr saying there are cancerous cells along with precancerous to actually saying the words "i have cancer." it has barely been 24 hrs. a dear friend and mentor was speaking with me last night, trying his best to offer words of comfort and hope. my focus at the moment was the 90% cure rate with surgery if caught early. he went on to talk about the pain i must feel of knowing something that could kill me is inside of me. i hadn't made it there yet. i do not do well with anesthesia, so my current fears began and ended with a major surgery. now death is on the table. i have gotten messages of prayers, love, telling me i will kick cancer's ass. i appreciate all sentiments. truly. is it childish to say i don't want to kick cancer's ass... i just want the surgery to work and it be done? i can see a protective hand pushing me through each step of this and i find extreme comfort in that. it has been 24 hours... i still don't know what i feel... i do know that telling me how i am supposed to feel is not helping. part of me feels blessed beyond words that it was caught so early, another very real part is still stuck in that transition of understanding that i have hyperplasia with atypia meaning i have cancer. maybe this hesitation makes me weak, maybe it makes me human, i don't know... but i do know i am not ready for cheerleaders. one minute i am very upbeat about the whole thing then my friend/mentor's words come back to haunt me. the best of intentions are doing more harm than good. i have no idea why i am writing. thoughts seems to jumble in my head so getting even a few out here helps. to those of you who know and have reached out, please do not think me ungrateful. For those of you just learning, i am so sorry you found out in a blog. how do you share this information in today's world of social media?


Saturday, June 20, 2015

Fourth of July

Admittedly, listening to Sufjan Stevens is not the most uplifting sound tract for this particular entry. I woke up at 7am to a knock at the front door. No one uses the front door, and certainly not at 7am. My roommate came in, with a note scrawled in barely legible script with a name and phone number. Lani was hurt by a neighbors dog... the owner is taking lani to the emergency vet. I jump in the shower and the final haze of early morning ambien washes down the drain. My cat is hurt. Not my cat, my baby, the one who saw Sue though scary nights when I was gone on the road, the one who would lick Sue's face after a seizure, the little angel who would plop herself on Sue's lap whenever a seizure was imminent. After Sue's death she wandered in a haze. Finally with a new kitten in the house, she had something else to protect, and I was a mess, so I became her lap project. She cuddled with me at night, slept on my back the many days I refused to get out of bed. So, no, Lani is not just my cat. I don't remember the drive to the vet, save one phone call from the vet, if she fails, should we use extreme measures? Dear God, not this conversation again. I flash back to a panicked drive to Boston after the fire. Conversations with Sue's burn drs at Mass General... After talking about Lani's quality of life it was decided that no extreme measures should be used, even before I got there.

I arrived and the dog's owner is horrified. She apologizes ad nauseum. I want to give her the relief she is begging for, but all I can think about is my tortured little angel. I walk back into icu and see the saddest/scariest sight I have ever had the misfortune of witnessing. She sees me, lifts her head, mews, and buries her head in my hand. I never noticed that my hand envelops her entire head before. She rests comfortably. I begin to sob, thinking that I could not keep her mom safe and now I have failed her too. The dr advises euthanasia, but wants one more set of x-rays to be sure.

The dog's owner and i make small talk for what seems like hours as I wait my angel's prognosis. The x-rays are ready and I am finally called back... my worst fears are confirmed. She is paralyzed and it will take thousands of dollars of surgery to correct the joint damage... which was not guaranteed nor recommended. The dr agreed that the most humane thing was to let her go. How could I say no? The only other creature who lived day to day with Sue and I is gone. And just like Sue she is gone because I did not protect her.

I stumbled into lifegroup tonight in a haze. I think I yelled at one point. I don't remember much. I walked out at some point.

I just know my lil girl would normally be curled up, snoring in the small of my back, but now it is cold and empty. I am holding Rusty a little closer tonight.

Monday, November 3, 2014

Brittany Maynard

I am irrationally angry about Brittany Maynard's death. As a theoretical debate, I have always been on the side of death with dignity... until now. She said a few things in her video that ignited a rage in me that I cannot explain. I should feel compassion, I should respect her right to choose in her home state, I should say I do not know her and that it is none of my business. But, it is... as the widow of someone who battled a fatal illness for years, it is very much my business. What set me off? Two comments... she complained that she had gained weight because of the medications she had to take and that her seizure activity was increasing. As I watched these remarks I could not help but think of my precious Sue... the years she spent fighting seizures of every kind. A woman who would bike 20-30 miles a day reduced to someone who could barely walk across the room. I think of Sue in her "bubble" after the fire and the precious times she would be lucid and wink at me. I think of the woman I loved who fought for every last breath. Sue knew she would die... even worse she thought she would be in a vegetative state for the better part of a decade as her father and all of his brothers and sisters were. These thoughts plagued her. Yet, she FOUGHT for every last experience, every last moment, for time with me and those she loved. Those who knew her can vouch for the power of her smile, the infectious properties of her laugh, the way the light in her eyes would dance when she was excited. Her stories were legendary. You knew that the majority of them were voiced in hyperbole, but the passion behind the story made you not care and choose to believe it. She could have sold you the Brooklyn Bridge. I think of everything that made up my angel... and I weep for those Brittany left behind. Knowing that we lived every second to the fullest and cherished time as it slipped away is a huge solace in her absence.

Sue was taking upwards of 30 pills a day and like Brittany gained weight because of them. This was not easy for her. She was once a vibrant, active person and that was not the physical state she was used to. There was a song out at the time, that ended up being sung at her memorial service, entitled Moments by Emerson Drive. It is a man reflecting on his glory days, the things he used to be able to do. The song hit home for Sue. She mourned what she could no longer accomplish, but her indestructible spirit would quickly bounce back and celebrate the things she could do... we found new things... When she could no longer do pottery, or paint, or draw she took up photography. She adapted. She allowed those around her to find new joys with her. Those struggles and experiences are precious gifts to those of us who loved her and were loved by her.

If Sue had asked for an out... of course I would have honored what she wanted. I would have driven her to the dr and picked up the rx myself. That is what a marriage is all about, putting the other person first. I will forever be grateful that she did not. Signing a DNR and pulling life support plagued me for a very long time. I knew it was her wish and the right thing to do... I will never regret it, but it weighed heavily on me. I cannot imagine the crushing weight of being on the other side of death with dignity. I would have done it for her, without blinking. She was my heart and her happiness was all I cared about. I so wish I could thank her for fighting... for the extra time we had when she could have given up. She had enough meds here to end it at any time. She could have easily made that choice. She was stronger than I.

Saturday was the anniversary of Sue and I meeting and Tues I will see some of my in-laws for the first time in a couple of years. She is definitely in the forefront of my mind right now... maybe that has made me overly sentimental. Perhaps I am simply being selfish, but this bleeding heart left wing liberal just changed her mind. Brittany's pleading of her case convinced me how precious every single second with a loved one can be.

Monday, August 11, 2014

Robin Williams

Robin Williams suicide hits close to home. As someone who has battled depression most of my life suicidal thoughts are always floating around. The question is how close to the surface are they. This is true for more people than I think most realize. For those of us who experience such feelings, we lack the words to express the depth of dispair we feel. A call saying hey I need to hang out tonight may be all we can get out. As I look at pics of him floating all over FB all I can think is I get it... I have been there and I don't know what stopped me. A massive rejection lately and some tough situations upcoming move thoughts forward. Why are they there for some and not others? Can it be blamed on massive childhood trauma? Traumatic events as adults? DNA? All of the above? Who can say... I do understand his dispair. I get thinking that things will never get better... that you mean nothing. Unfortunately, it is hardwired in there. I recently had a conversation with two people to iron out some difficulties which lasted about an hour and a half. Much was said. I am sure affirmations were there. The one thing I heard... from someone I greatly respect and care about, is that I am not the "full package" and cannot be used at this time. My hardwiring. So I beat my head against the wall to be this package I know I will never be and the hopelessness sets in and there goes the cycle. I say this not for pity but to give you a glimpse into the mind of someone who leans towards such extremes. You get enough of these cycles going and the "why bother" button is fairly easy to push. I see all of these FB posts about him, but I wonder how frequently people actually reached out to him. I say this as I think of the silence in my own life. I had an emotionally rough day today. I reached out to several friends beforehand and told them it would be hard. They know my past. Crickets. Not even a text. Fortuatley today was an ok day, but in another head space today could have ended very differently. A dear friend who lost her husband to suicide very close to when I lost Sue explained that it is perfect set of circumstances on a given day. Thankfully today was not that day. You cannot single-handedly take on a depressed person and babysit them. It is too exhausting, you are not a mental health worker, and you have a life. Let's be realistic. But, you would be amazed what a simple phone call or text can do to simply let someone know they matter.