Category: OPRAH’S YOUR LIFE IN FOCUS

A funny thing happened at Chemo!

Again I have to say, “it has been awhile”. So let me catch you up. Since we last spoke I switched my chemo protocol (twice). The last one was a combo of Tencentriq/carboplatain/Etoposide. This was a 3 day protocol every 3 weeks. I hated it. It was harsh on my system, I had some unfriendly side effects and frankly didn’t do much shrinkage wise. So I was happy to end that. For the last 6 weeks (I started Sept 8) I have been doing Radiation (let the Glow Jokes commence) + a Taxol/Carboplatain combo (both chemo) and that has had some results in the positive column. And luckily very few side effects. Monday is my last radiation treatment. Because of my previous history with radiation, the Dr.s say my body will not tolerate any more – so this is a 6 week and done option. I will get scanned in 1 1/2 weeks and then I go on Maintenance. Sounds a bit like a Diet Plan. Maintenance consists of an Immunotherapy (TBD) and maybe a support drug called Avastin. I will not learn the deal until after the Scan results are in.

But let me tell you about the weird side effects I had from the Taxol/Carbo protocol. My husband wanted to film it every time because he said it was so funny. I cant say that I remember any of it. I was told it lasted about 1 hour. It was caused by the “premeds”. — Two of which are drugs many of us take on a regular basis – but because they are given intravenously they often cause different reactions. The Drugs involved Benadryl, Dexamethasone, Eloxi (like a Zofran). The first time, I began to tell the nurse of the side effects next thing I remember is Scott saying Hello sleepy head.

I guess that was what I really learned from this go round (more so than the Breast Cancer Chemo in 2010). the nurses made my treatments (no matter how bad) have times of laughter, and smiles., and not scary. I don’t think their could be any higher praise for a scary, not fun period in ones life. Dare I say it has been the best experience of all 3 of my cancers. We also got Scott special approval to sit with me through treatment. Admittedly we fibbed a bit. Most of my treatments I had to do alone. And then on the advice of one of the nurses, we mentioned to the Dr. that without him there I was suffering form terrible anxiety, and while not exactly true the Dr. wrote a note giving him permission to be with me. He had to be masked and couldn’t leave the bay I was in during treatment but that was ok.

Scott and I would arrive. First was checkin, then weigh in, then off tho the seat I was assigned to Sit in. Once moved in to my bay, we began to set up for the next 3 hours. We both got our computers out and plugged in, Telephones out, and lunch box with my snacks for the day. Once settled in, my port is accessed and blood is drawn. First step was to hydrate me so I was hooked up to a saline drip until the meds arrived. We needed to wait about an hour for the blood results, so we called the homeopathic relief team — I would get weekly foot massages and Reiki. Isn’t that just so “boujie” that they offer that to all us going through treatment.

Then we would start the Layering process. As the meds were being given, I would begin to get cold and begin to shake. So the nurses would start layering me with warm blankets. I looked a little like an eskimo — head to toe cloaked in white hospital blankets. Getting up from under all that to go to the bathroom was a 2 person job. After that we turn on the TV and watch my boyfriend (I would joke with Scott). Jim Cramer of CNBC and Mad Money. I never watched this type of show before but something drew me to it and frankly he makes me laugh (and I learned some stuff too). Maybe the drugs or the tumor is turning me into a secret financial geek…..No chance of that – Just ask my brother.

So as the drugs were “pushed” (the medical term for adding them to my IV) I began to get Loopy (these is Scott’s version of what happened). He would say that I would start talking gibberish. Then my right leg wouldn’t stop moving (it turns out restless leg is a side effect). So now envision me moving and shaking my leg, talking gibberish all while sleeping. I can only imagine it is a bit like Steve Martin when he did the “Wild and Crazy” guy routine. Other side effects included itching in areas I will not disclose. Oy! Even the nurses had a good laugh at my expense – and if I didn’t revere them all so much, I may have gotten annoyed. But the nurses that take care of me are group of Super humans. They deal with illness and death and emotion and medicines and reactions and they remain positive, calm, helpful, positive, and connected to everyone of the patients they work with (could be up to 8 at a time). Scott and I could not thank them enough but we did bae them cookies every week — which they really seemed to enjoy. Well except the Rolo cookies that I left 2 ingredients out of. they were hard and tasteless I think —

Anyway, this is my round abut way of saying that this experience of horror has not been that at all. Of all the treatments I have been through, this experience (with moments of extreme fear, occasional pain, and quite a bit of tears) has also been complimented by laughter, caring, friendship and smiles. Not a usual way to describe Chemo and Radiation. In a week and 1/2 I get a scan, in a week and 1/2 I will learn something new and, hopefully, something positive. I learned to look and listen for the good news. It is easy to focus on bad, and hard to turn it into good and positive….Cancer, Chemo and Radiation make it hard to find the positive, yet finding the good, the funny and light is my way and I find that easy. So I guess it’s true Something happened on the way to Chemo – and I am positive it is something good.

ALL THINGS BEING EQUAL

TOGETHER SEPRERATELY!

All things equal today is a great day.  Even if I woke up this morning (Saturday of Memorial Day Weekend 2020) still living in quarantine.  Even if I woke up this morning and I still had Lung Cancer and even if I woke up this morning feeling uncertain about what is in store for the next few weeks, months, and years.  None of that matters, because I am certain that with All Things Being Equal I would still have woken up today feeling positive about the future, hopeful about life, and willing to make choices that consider all rather than one.  That’s my way.  Sometimes, I don’t always get my way, but that never stops me from trying.

Today I participated in an intimate zoom call with 40,000 other people and OPRAH – so I guess 40,000 and 1.  The topic centered on relationships during self-quarantine and social distancing.Before it started, I thought I had a pretty good handle on this subject – with regards to me, but it turns out – Not so much. 

I am a social animal. I love people.  I can talk to anyone.  I usually find a connection of some kind (my friends’ joke that while it maybe 6 degrees of Kevin Bacon it’s usually only 4 degrees of Carol).  I can find interest in something someone is saying almost always; though, I am not Gandhi – I have had a few times in life where I was in a place, event, or gathering, and I just wanted to run screaming from the monotony or the boredom or, worse, both.  But, when all of the Quarantini parties started, or re “zoom” ions or Friday Night Cocktails and Chats started, it wasn’t easy for me to get on board – it seemed to highlight that we were isolated.  Don’t get me wrong, I participated for a bit, but I felt the absence of presence.  Scott was my only presence 24/7.  Excluding our Honeymoon – I don’t really think we have ever been together that much EVER.

At the beginning of the quarantine, all was fine – it was new, and our underlying belief was that it wouldn’t last that long kept us moving forward easily.  After the 3rd week, I got that there was going to be a lot of Scott and I.  I didn’t always feel great (the chemo did that) but I did my best to hide that.  I still wanted to be social.  Go to the store.  Social distance on a walk; but my needs to be social were equaled by Scott’s desire to not be social. He and I were at odds over this.  I have since learned that this opposition in feelings is shared by many.  Couples everywhere were dealing with this same E-quotient divide.

In this group of 40,000, 1 couple openly shared their experience on this exact topic.  It was as if they were talking directly to me. Before the virus hit, they were a couple, a unit, a team, a partner, and a spouse.  They were all of the things couples are supposed to be – but what they weren’t supposed to be is those things 24 hours a day 7 days a week.  We are all supposed to get breaks, moments to recharge, moments of separation, and lives where all boundaries don’t keep overlapping on all sides.  This was what I needed, what I wanted…from Scott, and I didn’t know how to tell him.

By early April my irritation, impatience, and flat out annoyance began to appear in not always so pleasant ways – though, admittedly, I didn’t see it.  I found a way to pick at Scott for just sighing the wrong way. I was feeling the effects of solitude – but hadn’t acknowledged them yet.  Going through cancer during Coronavirus made me feel isolated on a visceral level.  On treatment days I had to be alone – arrive alone, wait alone, and be treated alone.  It was hard work keeping my s**t together – which sometimes I couldn’t but worked hard to wipe off any signs of unsteadiness by the time I was home.   I am not willing to show anything but optimism.  That is as much for him as it is for me.  I know how nervous he gets when he has to go out.  He fears that he will bring something back into the house that could make me sick, which is sweet – but I wouldn’t allow l myself to think that way.  Sometimes I just needed a break from the togetherness.  Neither of our personalities were very supportive of what the other needed at this moment.

Very soon after this, I reached the pinnacle of my annoyance. I needed a roadmap to help me help us off this path.  At this very moment I realized I needed to take a step back and see that we were both going through this together, just in separate ways.  Just because our reactions are different doesn’t mean that one of us is affected less than the other.  ALL THINGS BEING EQUAL, we are both internalizing and externalizing our feelings in our own and very different ways: As it should be, since our personalities are very different.  And on any other given day – this is what I would want because this fact is what makes us work so well together. 

It was an eye-opening realization.  I am always so willing to share my insides with those on the outside.  It is a part of me that I am so proud.  But my insides got a bit jumbled being home. My feelings had been isolated as well and they are not used to that.  I have always had an outlet for them, but zoom didn’t seem like the right medium for me, so they stayed inside me and inside my home.  Tucked away in a corner closet so to speak.  But, “you can’t put Baby in a corner” and eventually they came spilling out.  But as with so much in my life, I learned from it.  And today, as I listened to the Oprah’s Your Life in Focus: A Vision Forward Webinar – I was able to put all of this into it’s correct compartment in my mind.  Here is my take:

Oprah talked about the importance of I AM and what I AM’s can do.  What can they do you ask, well, I AM’s can set you on a path towards a goal.  I AM is the first step (or the first words) in moving towards being who we are in the best way.  Oprah used an example – “when you say I Am something…I am giving direction to an action.  We often attached it to a negative action like I am tired, I am mad, I am moody, I am overweight.” But what if we change the action to a positive one?  What if I say I AM working on gaining more strength, or I AM taking positive steps towards my own sense of purpose?  We are setting out on a path towards beneficial outcomes and ALL THINGS BEING EQUAL that is a better path to take.  I mid-April Scott and I began to work on changing our I AM, and I am happy to say it seems to be a good direction.

I AM still trying to be the “Lamp” in the room or the “ladder” by which I climb when trying to help others!  I AM still choosing to be more positive, encouraging, and assured as I can be because that direction makes me feel less shaken and stirred by the world events (and my illness).  I AM ready to emerge from this isolation softer, stronger, and more solidly united – though still physically apart.

The good thing is (you had to know there would be a good thing) that while this may not be a perfect world right now, ALL THINGS BEING EQUAL, I AM confident that we are heading towards one, and none too soon.

ALL THINGS BEING EQUAL is a good place to start!  Happy Memorial day