Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.
I was at odds with myself about writing this post, but the more I watch my neighbours in the US trying to destroy each other every day with an onslaught of barbs, jabs and hate speech, the more I felt moved to offer up my perspective….
I am a gay man. I was born this way – it is not a choice we make, so never let anyone tell you that it is chosen. Those who profess to be cured (“ex-gay”), were never gay to begin with. I am a loving, caring, soulful, spiritual man – an active member of society: I volunteer, I work in my church, I support my friends fiercely with their causes, and they know I will always be there for them. I strive to excel in my workplace and I am respected for both my work ethic and my contributions to my communities. I hold my family in the highest regard, and they bless me with the same love. I love my God and I am blessed in return with more in this life than I could have ever imagined myself. I am respected for “who” I am, for what I contribute, for this person you see before you.
But I am not – to cut through the stereotypes – promiscuous, into children, ready to marry my dog nor do I expect “special” rights. Nor am I a child of Satan, as “Michael Bresciani” has deemed gay people. I wish for the same protections, rights, freedoms, respect and benefits as everyone else. I have no hidden agenda, no secret recruitment scheme, no conversion tactics, no ulterior motive. I am not broken, misguided, evil, sick or less than.
I am exactly as I was created.
I want the same things as everyone else – to find love, to cherish each other for our similarities and our differences, to be respected, to be heard, to be treated with dignity and to make a difference in whatever way I can. For so long, gay people have been labelled as promiscuous, and I will agree that many are – just as many heterosexuals are. Hit any bar/nightclub on a weekend and the behaviour you witness is not so different in either community. However, to then deny us the opportunity to show that we are in committed, loving, respectful relationships or marriages, removes our opportunity to show that we function just like the majority. We too want stable, loving, beneficial partnerships to enjoy.
Same but different is not equal.
I have never understood the argument that “Same Sex Marriage” cheapens traditional marriage. How? How does my love for my partner – wanting that to be something beautiful – cheapen anything? How does it change your bond that I am blessed to live in a country that granted us the right to marriage equality, and have been married?
I was once asked by a friend, quite sincerely, “What does it feel like to be in love with another man?” I simply told her that my feeling of love felt exactly the same as it did for her. I watched as she sat for a couple of minutes – the look on her face changed, the light bulb went on and she apologized for the question. She proclaimed, “I had never even considered that it would be that simple.” I can only speculate as to why she had never considered that the emotional connection would be the same for me as for her, but her one question and my openness changed her life that day.
I am not going to wade into the religious argument – the mud-slinging in the name of God is fodder for numerous other posts – other than to say we were commanded to love each other. Judgements and hate-filled speech in His name don’t fly with me, regardless of which side of the issue you are on.
We seem, as inhabitants of this planet, to have a need to vilify each other on an ongoing basis. Pick a segment of society that has not been targeted in history: Blacks, Jews, Mexicans, Japanese, women…what is our flaw? Why do we have the need to take down that which we find different from ourselves? What if you were next?
Whatever your beliefs, let us remember that we are all “people” – flesh and bone, full of dreams, wants, needs and the deep-rooted desire to be accepted and nurtured. We are “all” special, we are all worth something, we are all valuable. We are “not so different” from each other.
Temper your words, lead with love, speak with kindness; we are all bothers and sisters of humanity.
Go out into this great world, love your neighbour, and most importantly, love yourself.
My son has taught me how to live, love and grow in ways I could have never understood before. His very being keeps me going and gives me purpose. It is a love like no other.
My only sunshine
After nearly three years of trying to get pregnant, (including an ectopic pregnancy, surgery and infertility) in June of 2009 I successfully conceived. I didn’t allow myself to get too attached while I went for weekly blood draws and ultrasounds to monitor my early pregnancy.
As the first trimester passed and we saw our tiny bean grow into a perfectly formed tiny baby, the hope in me stirred and I began to let myself feel joy. Anxiety continued, however, as I underwent frequent fetal echocardiograms to evaluate the baby for a heart condition he was at risk of developing.
The second trimester came and went and his heart remained perfect; we were in the clear.
In my third trimester, at 32 weeks, I started having contractions, followed two hospital visits for pre-term labor. At home, I remained on bedrest, and made it to the 37th week.
My labor was quick and my beautiful baby boy was born perfect and healthy at 6 lb., 1 oz.
I felt the biggest relief in my life when I saw my newborn baby. This joy quickly dissolved when the OB began the repairs. I began feeling very funny. I was trying to communicate how weird I was feeling when I found I was unable to speak. Ringing in my ears drowned out the sounds and I slipped into unconsciousness.
This is it, I thought. My baby was born healthy, but I’m paying for it by dying in childbirth.
The next thing I knew I woke up on the Mother-Baby Unit. The nurses there cheerfully told me I had experienced lidocaine toxicity and my baby was with my husband in the nursery. I ached to see his face and hold his perfect body. When they returned, I instantly felt a jolt of joy and energy as I acquainted myself with my new family.
Two days later, we were discharged and went home as a new family of three. Our families had camped out at our house but we sent them home to have the space to figure out what we were doing.
The next few days were quiet but things did not feel right with the baby. I couldn’t shake the feeling that something was wrong with him. My milk came in late and my son became dehydrated and difficult to arouse.
After that crisis resolved, we received a concerned call from the pediatrician. The results from A’s metabolic screen were positive for a rare but potentially fatal disease. They cautioned us that there are many cases of false positives, but I went into panic mode. We stayed on alert night and day to watch him breathe. We had to wait for a week for the news that it was an error. He was fine.
You make me happy when skies are grey
The weeks after were full of relief, bliss and love.
I managed through the marathon feedings and fell more in love with my son each day. Parenting seemed to come naturally to my husband. I finally had everything I dreamed of. Then at 11 weeks, A did a remarkable thing: he slept through the night.
Usually a cause for celebration, this milestone marked the beginning of my downfall. I felt as though this gift I had dreamed of for so long was a mirage and could be taken from me at any moment. The lines between fear and reality became blurred.
First, I stopped being able to sleep. I felt the need to rest my hand on the baby’s chest to feel the reassuring rise and fall. I started having the most disturbing images in my head. These horrifying images tortured me relentlessly. I felt constantly nervous and on edge. I felt so agitated I couldn’t keep my body still. When I lay in bed, my legs wouldn’t stop moving.
I had the most intense feeling that sometime terrible was about to happen to my son, A. Something that I had to stop. Soon, I was having stomach problems and I couldn’t keep anything down. I started going days straight without sleeping. I stopped eating solid foods. I lost twenty pounds in a month. I became weak and fragile.
The images I’d seen before were now coupled with horrifying phrases in my head. They all involved seeing my baby hurt. I had urges to do things like bang my head on the shower wall to stop them. These urges were like the most intense itch you know you should never scratch. I felt if I didn’t give in to them, I would jump out of my skin or explode.
During the day, I had panic attacks where I felt like I was dying; my arms went numb, my heart raced, I became sick to my stomach and felt paralyzed.
At night; the baby and my husband tucked safely in bed, I started having these urges to disappear. I wondered how fast I could pack everything up and drive off before they awoke. I thought if I disappeared, my baby would be able to grow and thrive and would be better off without me.
My husband did not understand what was going on and became very angry. We fought constantly. I had to ask him to stay home from work or leave work numerous times because I didn’t feel safe alone with the baby.
Soon, I found myself unable to get out of bed. I wondered if I was dying or losing my mind. I didn’t want to live anymore. I pictured milestones in A’s life without me present. I became obsessed with planning A’s birthday party because I had the distinct feeling that I wouldn’t be around by then. The day came when I couldn’t take another second.
That was when I reached out to my Mom.
You’ll never know, dear, how much I love you
I’d always wanted to get better. For my son, for myself and for my family.
I didn’t want anyone to know what a bad mother I was so I tried to stop visitors and kept phone calls brief. I’d been refusing to take the medications I needed because they were not compatible with nursing. Having to suddenly wean my baby was like a final blow of failure to me.
After my urgent phone call to my Mom, she left work in the middle of the day without packing a thing, got on the highway and talked to me on the phone until she arrived three hours later.
She took me to the midwife, who sent me to the ER to be admitted. But because I told them I had no imminent plans to kill myself, they wouldn’t admit me. They gave me sleeping pills and the address of an urgent care psych center.
Problem was, the place was a partial-hospitalization program, which my insurance did not cover and would require me to be away from my son during the day. I felt helpless and desperate. I didn’t have any hope of anyone being able to help me. I was taking the medication, but it didn’t seem to be doing anything for me. Things escalated at home with my husband and I really feared hurting myself, so I packed our stuff and we left.
After my Mom and my sister helped me get settled in, things started to turn around. I moved in with my sister who was a huge support to me. I had family and friends around me constantly. I had the help I needed to care for A while taking care of myself. I sought help at a local center devoted to postpartum mood disorders and began to see a psychiatrist and therapist regularly.
I was given a name for what I was going through: Postpartum OCD. I joined a local support group that meets monthly and I met the most amazing and inspiring women who really get it and have been there. Their strength was contagious. I starting believing that I could get better.
The horrible thoughts in my head started to disappear. I felt more connected with my son. I still had some panic attacks where I felt myself regressing and dark thoughts would again invade my brain. Sometimes, I felt like I wasn’t getting better at all and there was no point to struggling through it.
But I learned to reach out to those who cared about me when I felt this way. During my darkest days the phrase “this will not end well” would repeat itself in my head, this mantra was now replaced by “this too shall pass.”
Please don’t take my sunshine away
Time, therapy and medication have given me my life back. My recovery has been full of ups and downs; good and bad days. I am still working on mending relationships. But as the autumn came, I felt my old self emerge.
I will never be the person I was before I had a child, but I am a stronger, wiser woman. I have found I am strong enough to make it on my own, but that the support of others is essential. I am learning to enjoy the moments without obsessing about what will come next. I am learning to let go of complete control and let my son explore and experience with my guidance.
It’s a new way of living, and it’s very freeing. I am able to enjoy every day with A. He amazes me on a daily basis. I don’t know what challenges or heartaches I might face in the future, but now I am healthy and strong enough to face them head-on. And if I’m not, I will still be okay because of the support system I have.
And in February, I will be at my son’s first birthday party, celebrating his year of thriving and mine of survival.
Recently someone came back into my life. This person was my whole entire world for about three years. They loved me. Completely. All my flaws.
This person made me feel whole. This person calmed every single negativity I had going in my life.
This person held me when I needed to cry. They listened when I needed to yell.
This person sat behind me and picked head lice out of my hair for eight hours when I cried because no one else in my life would help me.
This person was so beyond good for me. Then I started letting the negative creep back in, I let the people who were supposed to care talk me into believing them instead of this amazing person I had in my life. You see, I always knew I was a failure. I always knew I would never amount to anything. This person believed in me and my worth and well… I really don’t know. I have no excuses except I was young and dumb, and influenced easily by people who should have been supporting me, but weren’t. I longed for THEIR approval and love, and if I didn’t have that, why should I deserve anything else? I left this amazing person with a heavy heart but headed in a direction I was being basically shoved into for many years.
I married, had kids, was verbally and emotionally abused before I finally left. Even after I left I tried to make it work. After all, no one else would want me. During this time I searched out my person from before. They were far away in another land. They seemed happy and from what I could see across a computer screen, didn’t want me anymore. I did reach out, I called, I emailed, I basically stalked this person. But they had moved on. I was just a memory to them. And that was okay. After all, I didn’t deserve them.
Fast forward a few more years. I still watched my person from afar. I was friends with their family but still had not contact with my person. That was okay. I was happy knowing they were happy. I met someone, dated for a few years, got married again. And I am finally HAPPY! At least most of the time. My old thoughts are all still there but I try and push them away, and am mildly successful.
A couple weeks ago, my person showed up in my life again. Like a whirlwind. They have never been far from my thoughts. I still watched. But here they were in my inbox! We have been talking and it’s like the last 20 years disappeared. And I am right back where I was, where we were. My person and I. And I am so much in love. I always was.
And I am torn. How can I love two people this much? What do I do? I need this person in my life, it’s like a part of me has been missing for so long. Literally, it feels like I got my right hand back. I need them to know I love them. Because I do. But we can’t be together. I love where I am in my life. I love the person I have chosen to share my life with. I love my home and my job. There is a half a country between us, and 20 years and a life.
But I still need them in my life.
I find my mind wandering a lot lately. The what ifs. I find myself wanting to wake up in one of those stupid romcoms where everything is different, but it just seems right. I want to find a damn Delorean. I want to go back and not be a stupid kid.
When you comment on my posts that you understand, or you’re sorry, or that you love me? That may be the only positive experience I have that day. I know I SHOULD live for myself, but I can’t. So I live for you. To tell my life experiences. The things that made me who I am.
Dealing with PTSD, childhood sexual abuse, suicide, prematurity, abuse, horrible (now-dead) parents? Is a load of fun. (Sorry, sarcasm is my primary language.) By sharing stories of my mother’s suicide and my own self-hatred, your love and support makes my life a little more bearable. Every single one of you.
The Band, each and every single one of you is awesome, and I love all of y’all!! Thank you for sharing your stories. The ones that we all smile reading. But especially the ones that make us lose our shit. Because you’ve been there, survived, and lived to tell the story. Thank you, Band.
Your love is the only unconditional love I’ve ever received.