The Chemo Room

When I was first diagnosed with Breast Cancer, I went for a consult at a fancy clinic attached to one of the major hospitals here in South Florida.  I was terrified.  I remember sitting in the car, literally shaking and not wanting to go in.  I had all these visions in my head of a waiting room filled with sad, sick women, with scarves on their heads and no hope in their eyes.  When I got in there, I was pleasantly surprised.  The waiting room was decorated in warm, soothing colors, and it didn’t feel as depressing as I had imagined.  After meeting with the Oncologist, who was very young, but whom I liked, I was given a tour of the rest of the facility.  They had a mini-spa for massages and facials, a salon for trying on wigs, and, of course, the chemo room.  The chemo room was a large space, with chairs set up behind curtains and flat screen TV’s attached to the chairs.  I saw women hooked up to IV’s, most with a family member or friend sitting with them, but no one was talking or interacting. I left with the plan that I would get chemo once a week, for about an hour, starting with one medication, then switching to another after about 8 weeks.  The whole process would take about 16 weeks.  As news spread of my diagnosis, I was encouraged to get a second opinion.  The name of one particular doctor kept popping up as highly recommended.  That doctor was Dr. Elizabeth Tan-Chiu, and I firmly believe she, and her chemo room, saved my life – although I almost didn’t give them the chance.

When I first walked into Dr. Tan-Chiu’s office, I was disappointed. It was a far cry from the comforts and high-tech amenities they had at the first clinic I went to.  The waiting room was small and white, with no pictures on the wall or anything decorative. I started to have my doubts.  When they showed me the chemo room, I almost turned around and left.  It was a large room, freezing cold, with several women sitting in recliners, hooked up to IV’s and covered in blankets.  The chemo nurse introduced me and everyone said hello and gave me words of encouragement.  The nurse, Cathy, explained that the chemo room was also a therapy room of sorts.  This is where women came to be healed and to help heal each other.  She said I would get to know these ladies very well throughout my treatment.  At that point in time, I was horrified.  I didn’t want to be out in the open where anyone could see everything happening to me and where I would actually have to talk to people.  I just wanted to get my chemo and be done with it.  Then, I met with Dr. Tan-Chiu and she changed my mind.  She had a different, more aggressive treatment plan and didn’t sugarcoat my situation, the way I realized my first Oncologist had.  After some discussion with my partner, I decided to pursue treatment with Dr. Tan-Chiu.  It was the best decision I ever made.  Dr. Tan-Chiu is amazing, and that chemo room, the one that so horrified me, became a safe haven for me.  I found strength, love, hope and happiness in that room.  Things I never imagined when I peeked in that first day.  I spent a lot of time there – some days from 9 in the morning until they closed after 5 in the evening.  We did become a support group for each other. The ladies I had the honor of sharing that room with gave me inspiration, information, support, and acceptance.  I looked forward to being there and seeing everyone.  Don’t get me wrong, it wasn’t all hugs and happiness.  There were tough times and tears, scary moments, painful moments, and heartbreaking moments.  Crazy as it may sound, I miss it sometimes.  So, here’s to the room where I was healed, and most importantly, here’s to the ladies who healed each other.

Zen and the art of Medication Management

I have been on one medication or another for most of my life.  When I was a teenager, I was diagnosed with Juvenile Rheumatoid Arthritis. What followed were pills, pain killers, shots, and side effects.  And thus began my love/hate relationship with meds.  Medication has literally saved my life, but it has also made my life miserable at times.  Since my teenage years, I have been diagnosed with 2 very serious illnesses – Systemic Lupus and Breast Cancer.  I’m blessed to be able to say that I am cancer free now, but I will have to deal with Lupus for the rest of my (hopefully long) life. I could go on and on about other side effects I’ve experienced, but that would take up way too much space. So, here are just a few highlights: Taking pain killers post-surgery and for chronic pain gave me constipation, the steroids for chemo made me shake like a leaf, gave me insomnia and made my face as red as Rudolph’s shiny nose.  The anti-inflammatories and steroids for Lupus upset my stomach and made me gain weight.  Post-cancer medication made me cry all the time and made my legs swollen and too tender to walk.  And, probably the most “fun” side effect from chemo was becoming anemic.  That was horrible.  Some side effects I’ve had to just put up with, while others I was able to address with my doctors, who made adjustments and fixed the problems.  Now, after a long back and forth between my Rheumatologist and my Oncologist, I have added Methotrexate to my other Lupus medication.  Initially, I didn’t want to take it, because I was sick of being on so much medication and I couldn’t fathom adding another one. But I became desperate when the pain and fatigue became intolerable. I had a rough start with it, getting nauseous, headaches, and light-headed, but have since built up a tolerance.  It seems to be working, now that I am able to take the recommended therapeutic dose. But, it was a struggle to get there.  My doctors disagreed about putting me on it; my Oncologist was worried about adding a chemotherapy drug to my medicine regimen after just finishing chemo for cancer, while my Rheumatologist was concerned about my skyrocketing labs that indicated increasing disease activity.  Finally, after trying steroids for almost a year, my doctors came to an agreement and started me on the Methotrexate.  I feel the difference and am grateful to be taking it.  However, I take so many meds now, that sometimes I feel hung over.  I’m trying to find the right times of the day to take all that I need to so my little body doesn’t get hit with all the side effects at once.  Some make me drowsy, some make me achy, some make me cranky, some make me pudgy.  Still, I’ll have to be on medication for the rest of  my life and will have to continue to practice the fine art of medication management to be able to enjoy my life, side-effects and all.

Happy NOW Year

I wish I could take credit for my catchy title, but truthfully, I stole – er, I mean, borrowed it from a Facebook post.  It instantly struck a chord with me.  Living in the now is something I strive to do, but find  difficult for various reasons.  I struggle with focusing too much on the past or looking too far in the future in terms of my health (being that I’m a cancer survivor and someone also living with active Lupus).  I recall attending a support group at Gilda’s Club when I was going through chemo and the topic came up about  ways to cope with fears and anxiety.  The group leader talked about how important it is to focus on the present as a way to diffuse panic and worry associated with cancer or any other of life’s challenges.  She had us do an exercise where we closed our eyes and focused in on our environment.  We had to describe the temperature of the room, the texture of our chairs, etc.  It helped to ground us and get our minds off of scary things in the past and possible scarier things in the future. We just had to focus on right then, nothing else. When I returned to work after a 6 month absence, I immediately taped up a handwritten note that reads “Be Here Now” next to my computer.  It’s still there two and a half years later.

One of my goals for 2015 is to make the most out of the “now.”  I want to do as much as I can with the second chance I’ve been given and not get stuck in the past or ruin the present with future fears.  But I don’t want to get complacent either and forget my experience with having cancer, because I need to do all that I can every day to reduce my risk of recurrence.  I also have to work hard to live as healthy and happily as I can with Lupus, which is also a daily struggle.  It’s scary to know that I have something that other people have died from (Lupus), but empowering to know that I also survived something that other people have not (breast cancer).  So, I will continue to work on finding a balance between remembering the past, but not getting stuck in it, looking forward to the future without fearing it, and making the most of the present.  Happy NOW year, everyone!

Pink Butterflies Update

Got the call from my Oncologist today -my labs came back fine.  Still Cancer-free, that’s me!

Pink Butterflies

Happy 2015 to all!  I started this year with my 6 month visit to my Oncologist yesterday. I love Dr. Tan-Chiu, but I always have mixed feelings when I go there.  Even the smell of the medical building where her office is located can bring back a flood of memories from my early diagnosis and days of chemo.  I feel a twinge of fear, a rush of gratefulness, a sense of disbelief (still!)that I even had breast cancer, and all sorts of other bittersweet feelings and memories.  When I walked in, I saw my surgeon, who was there seeing other ladies prior to their surgery.  The women were in the waiting room, sitting nervously with their mammogram films in the big x-ray folders on their laps.  Some alone, some with their significant others, all about to undergo a life-altering experience.  I felt some butterflies as I thought, “that could be me again…”  I think of the other women that I’ve met there and especially the ones I spent hours with in the chemo room.  Some of them I run into during my visits, and others I never see again.  I like to think that I never see them anymore because they are healthy and cancer-free and try not to think of the alternative.  It’s a bit surreal when I look at my surgeon and think, “that’s the guy who chopped off my breast” – then, I look at my Oncologist and think, “that’s the woman who saved my life.”  Pretty heavy stuff.  I’m a 3 year survivor now, and the fear is always in the back of my mind that I’ll have a recurrence.  For some reason, I was really nervous about it yesterday, but only when I got into the waiting room.  Now, I just have to wait for the bloodwork to come back and hope I get the phone call saying my tumor markers are fine and all is well. Until then, my butterflies and I will try our best to stay positive and stay healthy, one day at a time.

WordCamp Tampa 2016

September 10-11, 2016

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