MORE KIDS vs. NO MORE KIDS

I was never that woman who felt that she wasn't complete until she had kids.  I mean I always wanted kids, a couple, ok several maybe.  But you know what I mean.  Don't get me wrong, when I found out I was pregnant, I was all on top being a mom.  And a mom of twins no less.  Well, you can just imagine what this did for my multi-tasking, organizing efficient, micro-managing self.  But I knew from the moment my GYN said, "Well, this is interesting," that I would return to work after my three months of maternity leave.  I know what some of you are thinking.  I worked at home during my maternity leave - negotiating contracts, writing and signing checks, updating budgets - all while handling twin newborns, and sometimes while double breastfeeding.  Seriously. 

 

So before chemo started, when my medical oncologist asked me if I wanted to freeze any of my eggs (since a major side effect of chemotherapy is the onset of pre-menopause and infertility), Graham and I thought about it for a mere minute and opted not to. We did discuss it before we entered the doctor's office, and had decided that we have two beautiful little girls. If for some reason we did want more, we thought, 'There are lots of kids who need homes. We could have a kid in so many ways. Why burden ourselves with just one?' The oncologist made the notation in my folder, as if it was a requirement.  I mean, she was the one that made a couple of snafoos.  I'm sure there's been a lawsuit somewhere, at sometime, in which a woman wasn't told that the Red Devil poison would make her sterile, and thus could not fulfill her life long dream.  Ever.

 

I stopped having my period prior to my third of six treatments (about a month and a half), and immediately the hot flashes started. I was thankful to have a bald head, since it emanated so much heat I literally felt I could fry an egg on it. Over time, I appreciated not having to worry about 'that time of the month,' but could be found at home, the office, the subway dripping down to a mere tank top and yoga shorts no matter the negative degrees outside - all in the blink of eye. And with another blink? I'd be fully clothed again.

As I ended chemotherapy and went through the six weeks of radiation, I grew accustomed to my new normal.  No menstrual cycle, hot flashes that felt as if everyone had an inner bipolar thermostat, and my hair started to come in.  But right when you feel you've figured it all out, it turns upside down.  Once I completed radiation, I went back onto the daily dose of Tamoxifen, the estrogen blocker. It's known that estrogen is an inhibitor of cancer growth, another curse of being a woman, as if we asked for it - yet again. The side effects of this hormone therapy are, as similar to the chemo, hot flashes and onset of pre-menopause - hence, infertility.

 

But over the course of a couple of months, I started to realize I wasn't having any more hot flashes, as if I actually had to try to remember when I last had one.  Was that it? Was that my menopause? Is that all it took?   When I went in for check ups, each doctor (remember, there are four of them) over and over again showed a glimpse of surprise when I said 'no' to the question of hot flash side effects. (I'd also say no to any achiness, cramping, mood swings, although who was I to say anything about that last one.)  'Is this normal?' I'd ask.  'Everyone's different,' they would respond with a tinge of bewilderment. Then again, what is normal in the midst of all of this madness?

Then, on august 7th, exactly eight months after I had my last cycle, it returned. Not much to get excited about, especially the cramping.  I mean, if you had to choose, which would it be?  Cramping or having to deal with tampons, pads, panty liners, etc.  You see, when my period returned after breastfeeding, it was pretty much insanity.  Like it was on the schizo cycle.  And the same happened now.  Like clockwork, I had my period for the next two months.  I thought, wow, maybe I'm that lucky woman who is spared.  Maybe, I can in fact have more kids! 

 

I return for my medical oncologist follow-up, which is every three months for the next two years.  I get weighed, have temperature & blood pressure checked, and wait for the doctor.  As always, the mildly obnoxious assistant comes in first, and I amuse her as I can so that I get in front of the doctor as fast as I can.  Done.  She leaves to get the doc, I remove my shirt, put the robe on, and mount that butcher paper covered table.  The oncologist, with her assistant in tow, enters, and examines me.  As I tell her the lack of side effects, and the good news that my period returned, there's no confetti.  No noise makers, balloons, or fireworks.  In fact, she goes on to mention how she might recommend an additional estrogen blocker via a monthly injection, as is the norm in the UK.  You see, being so young, with so much cancer, so many lymph nodes affected, apparently, the doctors are a bit worried for the cancer returning.  So blocking as much estrogen as possible that could further that along the better.  I take a pause.

 

'So I can't have anymore kids?' Now at this moment, from the corner of my eye, the mildly obnoxious assistant (who I might as well call MOA from now on) emphatically shakes her head 'no.' I quickly turn to her without hesitation.  'That is not acceptable.  That does not help a patient.'  She's stunned, as she should be.  I mean, no matter what, a patient doesn't need the opinion of a doctor.  One needs the information, all of it.  Then, you can make whatever decision is best for you.  My oncologist calmly looks at me and says, 'I recommend that you stay on the Tamoxifen for at least two years before considering to go off it and try to have anymore children.  Look at your options then.  If you want to have any kids again, you shouldn't take the additional estrogen injection.  You had alot of cancerous lymph nodes, and advanced tumors in your breast, all at a young age.  You have two beautiful children, and should be there for them.'  I politely thanked her, and wanted them to leave the room as soon as possible.  She continued to tell me that if I wanted to have a PET scan once a year or two years, she'd authorize it for me in order for me to officially feel being 'cancer free.'  We extreme pleasantries, they left and I dressed as fast as I could.  I still had to go to the Blood Draw room, to get my blood tested for varying levels in my liver and iron, signs that would indicate the return of cancer.  Then I left.

 

You never know quite what you want, until you can't have it.  Right?  I know that I should be thankful, and I am.  It doesn't help that Penelope keeps talking about wanting a sibling, twin boys in fact, one for both she and her sister.  I'm trying not to hold onto baby things, as I had done before.  Hurricane Sandy helped with that.  As for my period, it hasn't returned this month.  It's probably for the best.  I mean, what's the purpose of it, if it can't give you anything in return? 

 

BRING YOUR ADVOCATE

Now that I have a little more time on my hands, I'm going through some older blog postings that I never published.  This one should have been the first on my list.  It isn't just for grown ups.  I found myself as the advocate when Sophia when through her initial complex febrile seizures at the age of 2 1/2.  They nearly discharged us from the ER, before she had a second seizure (stopped breathing) and then third seizure (cleared CAT scans).  The next day in the pediatric neurology unit, with 30 wires stuck to her head and on EKG all night (all clear, no signs of epilepsy), they nearly discharged her again, until I forced the doctor to look at her motor skills.  She couldn't grab things out of my hands, sit up on her own, and since she was imprisoned in a caged crib no one realized that she could no longer stand up.  It took her three more days to learn how to walk again.  As a two year old, she couldn't voice her needs, say what was wrong, or even comprehend what was happening.  I, as her mother and advocate, had to speak for her.  Little did I realize, exactly one year later, I would need an advocate to speak for me.  I wrote this during my third round of chemo, in December 2011.  As I'm approaching the one year mark of starting my chemo treatment, I still to this day don't think I would have gotten through it had it not been for my advocate.......

Along with the adage, you hear what you want to hear, your advocate is there to fill in the blanks, and also to be your back up. For me it is Graham, and there couldn't be anyone better. As much as you think that I fight for myself, Graham is my warrior right alongside me, during the entire battle. He is there to ask questions, ones that we prepare but I somehow can't get past my lips. He is there to keep me present. There to hear things, phrases, terms, orders of procedures. There to understand the surgery, the pain, the healing. There for me, because even though I could do it if I had to, no should go through this alone.

It was most evident when my oncologist set my chemo start date, and gave me my prescriptions for anti-nausea and codeine for pain. Imagine, you are preparing your mind and body as best as you know how a full week before you have poison drip and injected into your system over the course of several hours. Not something you're necessarily looking forward to, but definitely something that you're building up to. When the day arrives, the oncologist, with her assistant nearby, says, "Did you take your steroids yesterday and this morning?" Um, what? "You didn't give me any steroids," I reply. "Of course I gave you steroids," she answers, actually starting to make me feel as if I had made the error. I start to second guess myself. Did she give me a prescription for steroids and I forgot to get it filled, pick it up, didn't take them? But before I could utter another word, there was Graham. "No, not once did you ever mention steroids, nor did you provide a prescription for steroids." She was caught. And before she could have a chance to turn me away to delay the start of the poison drip, he adds, "You can't turn her away today." Yeah, that's right! "I have nothing to do all day so take as long as you need to figure it out." Now in hindsight, I probably should have waited, after hearing horror stories of the effect that that the one chemo drug has on people while in the chair (burning of the skin, severe spinal pain and possible permanent damage, and more) that the steroids are supposed to protect you from. Then again, it's probably better that I didn't know. Mind over body is an incredible force, especially when you have your advocate standing beside you along the way.

And there are just so many other things that happen throughout all of this. Having your advocate there with you helps you keep on track. Not only is Graham my fact checker with the doctors, but he is also my coach, pushing me along the way.   And by pushing, I mean telling me to get my ass up and stretch my body.  He makes sure I'm on top of my medicines, appointments, doing my necessary exercises. Tough love isn't for everyone, but he definitely knows it's exactly what I need to stay ahead of this.  He is what makes me able to get through all of this. I knew before that he was my best friend, my husband, but never advocate. Another checked box next to the mountain man that I love with all my heart.  Seventeen years together and counting.....

 

 

KNOW YOUR PATIENTS BILL OF RIGHTS

Sometimes, as patients it's easy for us to sit back and let someone else take care of us.  But being a patient isn't that simple.  You have to be on your toes now more than ever, and there are things that you should know in order to ensure that you receive the best care possible.

You have the right to demand all copies of your medical records for your own personal keeping.  Don't rely on one doctor to openly share it with another.  They require your approval, and then the reliance on someone in an office to actually send them.  If you have your own copy, you can simply make a copy yourself and take with you.  But it also helps to read through the jargin yourself, to remember the terms, the condition, and also not feel as if you are alone in the dark when the specialists are communicating in the room as if you're not there.  I make sure that I know the terminology so well that I can repeat it back to them if necessary.  I am able to finish their sentences, correct them on the terminology.  If anything, it makes them stay on their toes around me, making sure that they know as much about my diagnosis as I do.   Also, feel free to talk through all of your results with the doctor, with the pages there in front of you.  Know that no one knows your body better than you. 

See, I have a high threshold for pain, which I inherited from my mom.  I don't bruise easily, and when I do I usually have no idea how I've gotten it.  So when I do have pain, I know that I have to keep it under control and managed or it will become unbearable.  After my double mastectomy (otherwise known as a bilateral right modified radical left prophylactic mastectomy in the medical field), I describe my exact pain to my breast surgeon (my pectoral muscles feel as if I've done a massive bench press workout), and I remind her of my threshold (basically that I need the good stuff).  Being the professional that she is, she tells me that when I check out to tell her assistant that I need Percocet and Valium. Fast forward to two hours later when I'm checking out an entire day earlier than expected (because if there's one place you can't get any rest it's in a hospital),  I tell this to the young doctor to be, who's dismissive and tries to tell me that codeine will be enough.  I hold my ground.  I know my body, not her, and tell again exactly what I'd need per Dr. Estabrook and that if she isn't going to provide it that I will just walk over to her office upon my departure.  Needless to say, she pulled out her pen and started writing.  Ok, so a little threatening on behalf of your own health goes a long way too.

It's very easy to simply allow the doctors to 'do their jobs.' But think about it.... You are one of dozens of patients that a doctor must keep track of.  And, even though it's hard to believe, a doctor actually has a personal life.  Who knows what's happening with his kid, or her spouse or even if the doctor is dealing with medical condition of her own.  Not to mention all of the medical terminology that one has to keep straight.  I mean I know it's a doctor's job, but that's a lot to keep in one brain.  When it comes to your own health, or that of a loved one you're an advocate for, there is a no holds bar on the amount of information you are privileged to know.  And the last thing you should be worried about is making sure you don't hurt the feelings of or step on the toes of your doctor.  You are not there to make her/him better.  They are there to make you better.  Be sure that they do.

TONIGHT's LESSON: always ask questions

So when it comes to being told that you have Stage 3 Breast Cancer, or any disease for that matter, it is better to have it repeated to you over and over again, at least it is for me. I know that sounds a bit morbid, but the more I heard it the more it became easier to cope with and then treat.  Whenever I meet with a doctor, I become that anal patient that has a list of questions, feeling like a reporter doing an interview, at times becoming a bit on the offensive.  'How do you know this will work?' in which the response was, 'we don't.' or when Graham asked the plastic surgeon, 'how many times have you done this operation?' in which Samson replied, 'unfortunately, we do almost a dozen a month.' We would sit at home, and think through every possible scenario, circumstance, possibility, and write it down to ask the doctors.  No question is ever too stupid, simple, frivolous.  This is your life, your body.  So when I empowered myself with all of the knowledge I felt I needed, it then became easier to know what I would do when given any opportunity.  I had a battle plan, and with that I was able to move forward, full steam ahead. 

IT'S BEEN ONE YEAR...

It's been one year today.  Exactly one year since I've been told, 'You have cancer.' There are times when  it seems like just yesterday, times when it seems like ages ago and times when it seems like it's all been one long dream.  I do remember the feelings of 'how will I ever get through this.'  I especially remember the feeling of how will I tell my parents, as if I had done something wrong.  I didn't hesitate telling Graham, I can tell him anything, and I had to.  He's been my sounding board through all of this, my rock, never wavering. But it has been one year, and I can honestly say that I have no regrets.  

I started this all, the writing and blogging that is, because I didn't want there to be any worry of what was happening to me.  I wanted my family, mostly living far from me, to be able to go through their daily lives without having others question my diagnosis or treatment.  I wanted my story to be told my way, with my words, and not anyone else's.  Little did I know what it would turn into. The writing has helped me more than words can say, literally. And I'm glad it's been able to help others, to either cope or understand or even to put perspective on one's own life. I do however feel there are precursors that should have been stated at the beginning of this, but I would never have realized had it not been for having cancer.  Over the next weeks I'll be posting them as I continue this next part of my life.

Funny thing though ....., this morning I put on a dress which I haven't worn since my exchange surgery, and though it beautifully fits or so I thought, there is something a bit, well, off.  As I leave my building and start the three block walk to the subway, I feel it, a breeze I never felt before.  I look down and realize I am on the verge of pulling a Tara Reid.  SERIOUSLY!  I start brainstorming, do I have time to go back inside, can I hold it together until I get to Duane Reade?  (cue lightbulb) My dry cleaner!  On the way to the subway, my Korean friend waves her daily good morning smile, and quickly detects the worried look on my face as I dart inside.  'Can I have a safety pin?' I hastily ask.  Before I can finish the request, she holds one out over the counter, and laughs. 'They nice, but you don't need brag about them!' Ah, the things I can look forward to.  However, I'm a bit relieved....I felt something, which means the nerve endings are trying to reattach. Things are indeed looking up, or at least my new breasts are!

Check out this blog.

http://inshanesbrain.blogspot.com/

Great blog by Shane Morgan.  Thanks for the shout out Shane, and sorry that it’s taken me 8 months to see it!

tribute to ERICA ...

I honestly can't remember the first time I met Erica.  Seriously.  It's only because we were so young when we first met.  I was maybe five years old, she a year older.  We were on the same softball team, and her dad taught me and many others how to play the sport.  The CATS, that was our team name.  What I do remember ever since I've known Erica, is her smile and laugh.  She was always the pillar of optimism and fun, and an even better athlete.  As we grew up, she may have gotten older, but she never changed.  Everyone that ever met Erica feels the same way.  Go ahead, ask them.  There was just something about her.  We were cheerleaders together and spent many weekends traveling to sporting events.  After high school, I didn't hear much about her only because I moved away.  It happened with almost everyone I knew growing up, until the invention of the internet and then Facebook. 

She graduated high school in 1992.  She then went on to study and graduate from Southern University in Baton Rouge, LA.  She married her love Kendrell, and has two boys - one who will graduate high school this year and the youngest will start kindergarten.  She became a teacher and continued to share her happiness.  For the past twenty years, she lived her life, as we all do. 

She was one of those that were slow to get on Facebook, this past January to be exact.  She turned 38 on May 5th.  I reconnected with her soon after.  See, Erica was diagnosed with cervical cancer.  Her treatment was complicated due to her living with Lupus.  She was only able to receive one round of chemotherapy.  But, as with some treatment, more complications arose.  She developed a blood clot in her leg and treatment had to cease.  She remained in the hospital where they put stints in both of her kidneys, drained fluid out of her abdomen.  Her blood levels were so low that she required blood transfusions.  The community came to her aid.  They held blood drives, several in fact, to give her what she required.   Hoping that it would all make her better, she was scheduled to be transferred to MD Anderson by the end of the month although her family was fighting to get her there sooner.  As her dear friend Christy put it, sometimes all we get is 38 years.  She held on as long as she could, but those that loved her most knew that when there was no laughter left, that her time come was coming to an end. 

Erica passed away last week.  Tomorrow, she is being laid to rest.  When you read her Facebook page, it's filled with the same sentiments that I mention above: 

• "Your smile and laughter will be truly missed!!!"
• "I will never forge that big smile and loving personality!!!!!! I love you friend!!!!!"
• "Thanks for putting a smile on my son's face everyday at school. We will truly miss you!!! You were such a loving person."
• "Oh how I will miss my friend Erica!!! Our hearts will always be filled with love and great memories that we shared together."
• "Words can not express how I feel right now. I've been crying and smiling all day. Crying bcuz I will miss my friend Erica so very much! But as I sit and think about her I can't help but to smile. She has touched so many with her energetic personality and bright smile. I love you dearly Erica and will miss u so very much."
• "I will always cherish the time I've spent with you. Such a beautiful and loving person. I will miss you, your smile, and your laugh."
• "One of the hardest parts of life is saying goodbye to a dear friend. Erica you were like a ray of sunlight to all the lives you touched..always supportive and willing to assist."

The time we have is precious.  Erica lived the best she knew how, by giving laughter and love to everyone she came in contact with.  Nothing hurts more than losing someone who deserves to have everything, including living a long life.  As I've said before, cancer knows no prejudice.  It doesn't care if you're a man or a woman, a grown up or a child, black or white, or even if you are an amazing person who's done nothing more laugh and love. 

So my wish for all of you this weekend is to take time to be thankful.  Whatever your beliefs, we are all here on borrowed time, and it's what we make of it that matters.  Nothing else.  Be kind to one another, volunteer, give blood, donate goods.  And if you can't think of anything to do for others, simply smile, because it does in fact go a long way.

Erica Joseph-Rapp (May 5, 1974 - July 28, 2012)

A wife, mother, daughter, sister, and dear friend.