hospice

And God Laughs

stickit2stage49 Comments

I should be sleeping. It’s 2:33am. I have to be up in four hours.

I am in Albany as part of a campaign for New York’s Medical Aid in Dying Act. The campaign, 50 Reasons by Compassion & Choices, highlights 50 stories of real people and their reasons why they support the bill. Its genius. The people included aren’t just terminally ill patients; they are members of the clergy, doctors, caregivers, loved ones. They all have personal stories; reasons that provide their perspective.

Today is my day to share my reason.

Normally, I can do this with my eyes closed. I’ve been coming to Albany and have been involved in this advocacy for years. I’ve blogged about it in the past. My reasons then were very clear. I didn’t want my son to see me actively dying, lying in bed for who knows how long and remember me that way. I was working hard to create special memories for him. I wasn’t going to have the end of my life strip that all away. While that’s still true, he’s much older now. There is another reason that has moved to the top of my list.

(This is the most unnerving coincidence – I know God is laughing)

Exactly one year ago, I published a blog What The Fuck Is The Reason. My dear friend Melissa died the night before from metastatic breast cancer. I had sat with her family, her best friend Chrysta, and watched countless others come and go as they checked on her or said their goodbye’s. There were a few nights I stayed with her Aunt and close family friends so Melissa wasn’t alone.

Facebook Memories Suck

Melissa lingered for nine days. There were times she was in pain but unable to communicate beyond calling out. She was visibly restless, and fluid was building up in her lungs. It was incredibly frustrating for those of us sitting there bearing witness. We were mad. We were upset. We felt helpless. I can’t fathom how Melissa felt being trapped in a body shutting down and not being able to communicate what she needed.

Death is not how it is in the movies or on TV. It’s not a natural, peaceful, falling asleep death. If you’ve never sat bedside for anyone while they died and thought that’s what it was like – you’re greatly mistaken. Cancer patients who have been on pain medications for a long time have it the worst. There is a level of tolerance that develops. A false understanding exists that with the right ”formula” of morphine, any pain can be managed. That may be true for some, but not everyone. The line between palliative coma and death is razor-thin.

Those days and nights I spent in Melissa’s hospital room gutted me; not to mention how it impacted her family, those that loved her and her sweet daughter. I don’t ever want to be trapped in my body like that. To put my loved ones through that. Those nights reinforced to me how important it is that there be Medical Aid in Dying laws in every State. Everyone with a terminal illness should have access to this option if they want it.

It’s not a religious issue – It’s a personal choice.

It’s not suicide (OMG It’s NOT) – I want to live. Cancer has other plans.

I think I always knew about the correlation in dates between yesterday/today and last year. I just never let my mind REALLY go there until it forced me. Always the middle of the night. Thanks, brain. While it will be familiar, it will also be different as I see staffers and lawmakers. The tears I know will come will be about Melissa.

I’m livin’ the dream, Melissa.

Livin it for you babe.

Two hours until I have to be up…..

What the Fuck Is the Reason?

stickit2stage421 Comments

I am so sick of hearing people say to me that I’m still here for “a reason” or I’ve outlived my prognosis for “a reason.” If there is in fact “a reason,” then please tell me, what the fuck it is.

This week has been especially difficult. A close friend of mine who I see on a regular basis and talk to daily, took a turn she unfortunately wouldn’t recover from. Her Mom called me this past Monday to let me know Melissa was going into hospice. I don’t care how prepared you think you are; you are never prepared to hear those words about someone you love. As I hung up the phone, it felt like someone pulled the world out from under me. I don’t remember a time when I ever sobbed like I did on Monday. I wasn’t crying for me. I was crying for Stella; Melissa’s 6 yr old pint-sized-version-of-herself, daughter. What kind of sick joke was the universe playing?

Melissa & Stella

I went to see Melissa Tuesday evening. In true Melissa fashion, her room was packed with family and friends. To know her, that was it, you had no other choice BUT to love her. Her no nonsense, tell it like it is attitude combined with a je ne sais quois and dimples gave her an unmatched power that would evoke a response of “Thank you, Hope to see you again.” after telling someone to fuck off.

My visit turned into an all nighter. I stayed with her Aunt’s Marie and Kathy. Of the three of us, Marie slept. Kathy and I talked all night and kept an eye on Melissa. Even the night nurse Vicky spent a good chunk of the night chatting with us.

Tuesday was the last time I would hear Melissa speak any words. By Wednesday night she stopped taking any liquids.

I returned to the hospital Thursday night. I was certain that the next time I walked out of the hospital to go home, Melissa would be leaving as well. Headed where she would be reunited with loved ones from her past and friends who had arrived ahead of her who were waiting patiently for her. Kathy and I again talked all night long while Maria slept on and off. By morning, the general consensus was she was waiting to see Stella one more time. No one could ever tell Melissa what to do and she wasn’t about to let anyone pull that crap now.

While all of this was going on, I was going through periods of anger rage. White hot rage. Serious question: Why Melissa? Why not me? Before anyone freaks out, I’m thinking this because I reached my “please God just let me live long enough to see..” goal. IF something were to happen to me, I know my son would be OK. Melissa, on the other hand, is 36 yrs old. She has milestones to reach with her daughter: Kindergarten graduation, first lost tooth, first sleep over, first crush, first boyfriend…Stella needs her Mom for this – all of this. There is no good damn reason to explain this unfair bullshit.

Then I encounter stupid people on social media (by proxy) and I may have had a rage tantrum. I read in a Facebook post that someone said they felt having cancer was a gift and that comment was offensive to the person who’s now talking about what she read. What-the-what? A cancer patient, who is actively living with cancer NOW feels it’s all a GIFT?? Now I have to give my two cents, which is more like a dollar fifty in pennies.

I said my last goodbye to my all-hours-of-the day-or-night-chat-buddy, my Indian food loving, CheesecakeCake binge eating, classic moving addicted, fabulous friend at 9:48am, March 1st, 2019.

Yesterday was a blur. I slept. A lot. I forget that I can’t keep up the pace that I think I can. My body gets exhausted and I shut down. Two all nighters in 3 days was cake in my 20’s but 20+ yrs and a cancer diagnosis later – forget it.

My phone rang at 10:49pm Sunday, March 3rd. It was Melissa’s mom. I knew before I answered. For a split second I wondered if I ignored the call, could I change the outcome? I answered and heard the words I didn’t want to hear: Melissa had passed.

Part of me feels very selfish being upset. My sadness is a little about me; but mostly for Stella. As sad as it is, Melissa is no longer in pain, she’s not struggling to make it through the day while being so exhausted all she wanted to do was sleep. She’ll never be nauseous or sick at the drop of a hat. Melissa will never have to endure another scan, treatment, or side effect.

I’m still pretty fucking angry. Death didn’t have to be what gave her that freedom. We should have better treatments. We should have medications that keep us going without the worry of impending death. There’s no good reason for children like Stella to be growing up without their parents.

So, I guess I’m just going to have to use whatever extra time I’m being given and take it up with those that failed Melissa and Stella.

Maybe, just maybe, I figured out what that “reason” is after all.

Melissa DePalmo ~ March 26, 1982 – March 3, 2019

15 Days In And I Already Want A Do-Over

stickit2stage47 Comments

I’m not going to lie. The end of the year was rough. There was what felt like, an unprecedented number of deaths in my circles. So, when January came a knockin’, well I was all too happy to close the books on 2015.

But it didn’t stop. The deaths and bad news just keeps coming and it’s becoming too much. I’m afraid to open my Facebook or Twitter because I know that there will be more bad news.

image

I’ve been feeling very much like I’m in a similar situation as the movie The Hunger Games. Any one of our names could get called for the last fight of our life. It’s just a matter of when – not if. Every time I hear another beautiful, strong advocate had her name called I wish the same wish – that I could give them more time. More time with their children. More time to give hugs and kisses. More time to read stories. More time to say “I love you”.

Then I begin to wonder when I’ll hear my name called out in the crowd. When will my time come when things go sideways and I have to be stronger than I’ve ever been and make decisions I’ve been hoping I’d never have to make. It scares me because I’ve watched the health of my sisters go from NED (No Evidence of Disease) to being out of treatment options and taking their last breath in a matter of months.

When will people notice? When will people begin to care? When will there be outrage and anger for all the children that will grow up without their Mothers?

image

Every day I yell and rant hoping that someone listens. Hoping that someone helps us. It can be very discouraging when the bad news keeps coming but I won’t stop. I can’t stop. I will keep yelling, ranting and making noise until someone hears us, until someone listens

The Meaning of it All and Other Questions

stickit2stage43 Comments

My heart is so heavy right now. Several women I know, that I have corresponded with are having such a rough time and there isn’t anything I can do about it.

Two are struggling with the treatments they are enduring. They are not able to walk or do simple day to day things we take for granted. Its difficult to read updates because normally these women are so vibrant and active.

Most of the time, the treatments that are meant to help actually make things worse for a period of time before they get better. Its not like taking an antibiotic for a sore throat and 24 hrs later you feel relief.

Another woman has been moved to hospice and the end for her is imminent. She has two young children that want their Mom with them but instead have to say goodbye.

Its just all so overwhelming. We form special bonds with women in similar circumstances over Social Media. We give advice, offer support, joke around, discuss treatments, side effects. Sometimes we are lucky and get to meet face to face. All the while, knowing one day it might be us that needs the prayers. Its just not fucking fair!

Some people think I should be thanking God it’s not me, but I can’t. I can’t do that because I don’t want ANYONE to be going thru this and one day, this WILL be me, and I can’t hide from it. I can’t hide when I have reminders like this week when I woke up having trouble breathing and in so much pain. It was very difficult to wake my husband and let him know I needed help. I had such feeling of guilt. I felt guilty for not ‘sucking it up’ and waiting until morning. I felt guilty for waking him up knowing how hard he works during the day. I knew by waking him up it was guaranteeing a trip to the Emergency Room.

image

Why is this my life now? Why is this any of our lives? Why are some of us being robbed of just living our lives? Being robbed of watching our kids grow up? These are wonderful people that have things to offer. It just isn’t fair. None of it.

image

On Monday, a large group of us (women living with Metastatic Breast Cancer and others) took over Twitter and Facebook in order to give a face and a voice to metastatic breast cancer. The purpose was to trend certain hashtags and educate people of the breast cancer truths many are never told. The Twitter goal wasn’t realized as it had been intended to but we did on Facebook (at least I think we did). Every time I posted or sent a tweet I did so with these women in mind. In fact some even included their picture. Bottom line, on Monday we made an impact and let our presence known.

I don’t have the answers to my questions and I probably never will but one thing is true: We will never be forgotten. None of the women that have passed from this disease will be forgotten and those left to scream and shout about MBC awareness won’t be forgotten either when its our time.
Even though this disease is a son of a bitch twatgoblin, I couldn’t be in a better group of company. I love these women and I’m proud to stand beside them.