When I was young, I always hated gym. I was never good at it. The running and the throwing of things was just never my bag. I was always short of breath and sometimes even came close to fainting. I always chalked it up to being a fat little kid who was grossly unathletic.
I lived for ninth grade because I only had to take a semester of gym and then it would be over forever, or at least until I got to college. I finished 9th grade and gladly went on my merry gym-free way.
Fast forward to 2007.
I had been out of high school and was in my third year of college. I began experiencing back pain, the likes of which I had never felt. I finally went to the doctor, and while the Nurse Practitioner was listening to my heart, she looked up and asked “You have a heart murmur, don’t you?”
I had never heard such a thing.
After tests, including one where they sedated me, shoved a “probe” down my throat, and looked at my heart (after which I cried for want of a cheeseburger), I was diagnosed with a regular heart murmur with Mitral Valve Regurgitation (which I described to people as “my heart pukes”) and Sub-Aortic Stenosis.
Some time later (2010-ish) my dad, who has CHD, began having Atrial Fibrilation episodes.
He eventually got in to see the doctor his brothers go to, and we loaded up to see if he could fix my dad’s bum ticker.
The next phase of the story I wrote about earlier in this post. During this time I was re-diagnosed with a condition called Hypertrophic Cardiomyopathy or HCM for short.
All of the things that I had experienced as a kid, all of the shortness of breath while running, all of the blacking out in PE episodes – they all made sense now (granted, they still don’t account for my athletic abilities or lack thereof).
After my diagnosis, I was scared. I began taking my drugs like a good little girl and prepared myself. I scheduled an implantable cardioverter-defibrillator (ICD) implantation for July, the month after my dad got his. I recovered just in time to return to work for the school year, and I am feeling better than ever.
After all of that worry and fear I have come to realize some things.
Not every 25 (almost 26) year old can say that she is battery operated.
Before any of this happened, I used to tell my students that I had a plastic heart; now I (sort of) have a metal one.
I tell people that I am part computer, or even bionic.
I make sick jokes about being shocked all the time.
My dad and I even joke about starting a doo-wop group with 2 of his brothers who have ICDs called The Pacers.
I never knew that having HCM and an ICD could be such a source of amusement. I even love to freak people out by letting them touch it under my skin. There is nothing better than the slightly horrified look on someone’s face when they touch the hard, metal rectangle on my chest.
In the end, the laughter and the jokes far outweigh the fear and uncertainty that I had before I got the surgery.
Plus, I hope that in the 6-10 years that it will take for me to need a replacement, they will have integrated an MP3 player into the device.
Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
Amanda’s Baby:
Jamie, 4/6/2010
Angie’s Daughter:
Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
Ann’s Son:
Orion, stillborn May 8, 2004
Beka’s Son:
Benjamin, September 4, 2012, stillbirth.
Beryl’s Daughter:
Bella Rose, stillborn on September 9, 2009.
Brenda’s Son:
Emerson Allen Behrends, July 10, 2001, stillborn.
Danielle’s Baby:
Micah Rachel
Debbie’s Son:
Jonathan Edward, June 4, 1992, stillborn.
Debbie And Jeff’s Daughter:
Chloe Eva, September 12, 2008, stillbirth.
Heather and David’s Daughter:
Clara Edith, July 1, 2012, Stillbirth at 42 weeks, 3 days due to meconium aspiration and uterine infection.
Jill and Mark’s Baby:
Haven, November 26, 2003, stillborn at 38 weeks gestation
Jolene’s Daughter:
Ruth, January 3, 2013, stillbirth
Leslie’s Son:
Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
Pippa, born still on February 13, 2011 from listeria infection.
Lillie Belle:
Stillborn, born still 2017
Lisa’s Daughter:
Kaitlyn Grace, stillborn, born still, May 13, 1995.
Louise and Joseph’s Baby:
Alice Mathelin, born still on February 25, 2011, at 36 weeks and 5 days from Abruptio Placentae
Martha’s Twin Boys:
Owen died March 8, 2008 because his cord wasn’t properly attached to the placenta.
Joshua died one month later, April 6, 2008 because he couldn’t live without his brother. Both were born still on April 8, 2008.
Melanie’s Daughter:
Summer Lily, born still March 30, 2011.
Mel’s Daughter:
Jordan Ala, stillborn on November 13, 2006.
Melissa’s Twins:
Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
Nikki’s Son:
Sam, 1997, intrauterine fetal demise
Sarah’s Daughter:
Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
Stephanie’s Son:
Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
TiaMaria’s Daughter:
Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Prematurity:
Amy and James’s Babies:
Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM).
Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Baby Helen: Born July, 1993. Passed from prematurity.
Celeste’s Son:
Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
Chantel’s Daughter:
Emily, prematurity born 19w 5 days – was too small for the equipment.
Christine’s Son:
Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Aaron’s Son:
Aodin R. Hurd, October 7, 2007, born still due to premature rupture of the membranes.
Jenn’s Son:
Kevin William, prematurity, 2005
Kate’s Babies:
Baby S, March 2008, Miscarriage
Evie, December 14, 2009, Triplet Prematurity
Jack, December 22, 2009, Triplet Stillbirth due to Prematurity
Will, January 13, 2010, Triplet Prematurity
Baby M, May 2010, Miscarriage
Kristin’s Baby (Mama KK):
Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
Leleisme’s Babies:
Ayla and Juliet, October 20, 2009 at 20 weeks.
Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Matthew Chase Sims:
April 25th, 2006 due to prematurity.
Melissa’s Son:
Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
Melissa’s Daughter:
Hope, 1993
Nicky’s Son:
Samuel, August 8, 2001, prematurity.
Nina’s Son:
Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
Paula’s Baby:
Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
Qudija’s Babies
Mikel Azariah and Willamina Azaria born August 12, 2019.
Mikel was stillborn,
Willamina was premature at 22 weeks 6 days
S & T’s Son:
William, November 2, 2013, 24 weeks, 3 days, prematurity
Vickie’s Son:
Collin, complications from prematurity, 2009
Yvette’s Son:
Erik Richard, July 29, 1981, prematurity.
Birth Defects:
Aaron and Kristine’s Son:
Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
Amy’s Babies:
Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days.
Mateo was born still.
Anthony passed away from Transposition of the Great Vessels.
Ian passed away after a short stay in the NICU.
Amy’s Babies:
Nathaniel James, August 24, 2001 – August 29, 2001, Citrullinemia
David Henry, May 11, 2010 – January 24, 2011, Citrullinemia, passed away after becoming sick post liver transplant
Baby Khalil, born August 14, 2009, stillborn, born still from birth defects.
Baby Kober
Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
Beth’sSon:
Ethan Connor Brockwell, May 3, 2006 – August 17, 2006. Born with Hypoplastic Left Heart Syndrome.
Christopher: November 4, 1979, due to pulmonary atresia, a congenital heart defect.
Christopher’s Son:
Aidan, born with brain malformation on December 16, 2008 and passed on December 19, 2008.
Cora Mae McCormick:
November 30, 2009 to December 6, 2009 from a congenital heart defect.
Ellen’s Son:
Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
Julie’s Daughter:
Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
Kathryn’s Son:
Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
Raquel’s Son:
Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
Ruth’s Son:
Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
Shannon’s Baby:
Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
Suzy’s Son:
Starbaby, born still February 2008 due to Trisomy 18.
Venita’s Son:
Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
Wendy’s Baby:
Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
Liberty Ann born March 30, 2011 and died on April 19, 2011.
Ally’s Son: Collin
Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
Amy’s Baby:
Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
Claudia’s Son:
Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
April’s Daughter:
Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
Colleen’s Babies:
Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
Jenny’s Daughter:
Addison Leah, June 13, 2008, accidental death.
Jessica and Mark’s Daughter:
Hadley Jane, born October 9, 2001 and died October 11, 2007.
Julie’s Babies:
Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
Lanie’s Sons:
Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
Leslie’s Son:
Cullen, September 11, 2010, stillbirth.
Mindy’s Son:
Brian Vitale, accidental death, September 4, 2007 – June 3, 2010. We miss him more and more each day.
Nancy’s Son:
Patrick, born April 10, 1977, Adoption
Pharon’s Daughter:
Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
Suzie’s Son:
Nathan Michael King, died from SIDS November 2008.
Vanessa’s Daughter:
Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
I have had 10 miscarriages – just saying that is hard for me
For so long I have tried to sweep it under the rug – once my number became larger then three I became numb to it all. I’m not really an emotional person, but this topic always brings up memories as if it all happened yesterday.
I have been through 10 miscarriages in 6 years.
I am 28 years old – I have been pregnant 13 times – and have 3 living children.
I can be a very private person, but I think miscarriage and infertility have enough secrecy surrounding it that I do not want to perpetuate it. The more it is talked about – the more women and families can feel supported and listened to and important – not embarrassed and ashamed like I am struggling to not feel. I am opening up the door to talk about it – so here is my long story:
My first two miscarriages were kind of a blur to me. We were not trying to get pregnant and basically found out we were expecting the same time we realized we were miscarrying. I had always heard that having one miscarriage was ‘normal’ and so I honestly didn’t put too much thought into it. They were still very painful and devastating to me but I thought once we were actively trying everything would be OK – that no one would have more then 2.
My husband and I decided to start trying for a family and we actively began trying to conceive using basal body temping as a guide. We became pregnant again in November 2004 after the first month of trying. I was about 6 weeks pregnant just around Christmas when I miscarried (#3). This time it hit me – hard. I mean I have never heard of someone who has had 3 miscarriages ever – let alone in a row.
Basal Body Temperature Chart using Fertility Friend
I began feverishly doing my research.
With my basal body charts I had noticed that my luteal phase was under 10 days (according to research the shortest it should be for a successful pregnancy) so I began to take vitamins B6 and B12 to lengthen it. I went to the doctor and his thought was that my progesterone was low and that is why I was not able to hold on to the pregnancy past 6 weeks. So a new plan evolved. I would stay on the vitamins and go on a progesterone supplement the moment I found out I was pregnant. This made the basal body temping so important – I needed to know the exact date.
We began another month of trying to conceive (TTC). Thermometer in hand and a plan in mind we became pregnant again in June and I was on the progesterone medication. The plan was to stay on until 12 weeks pregnant and then to slowly wean myself off. When 12 weeks came along we lowered the dose of progesterone but I began to bleed so we quickly went back onto the medication. The baby was doing fine and the new plan was to wean off at 20 weeks. 20 weeks came and I was successfully weaned off with no further complications. I had my first full term baby (Big P) in December 2005 – a healthy boy.
Big P – 8lbs 1oz
My husband and I had always wanted to have our kids close in age, so we starting TTC again relatively quickly. I began the basal body temping again and got pregnant pretty quickly. When I got the positive I went to the doctor to get a prescription for the progesterone and started taking it again. I miscarried #4 shortly after 7 weeks. My doctor and I both thought it was because the progesterone was not started soon enough so I was given a prescription for the next time to begin the day I had a positive test. I got pregnant again and started the progesterone but miscarried #5 at 6 weeks 5 days and I was starting to lose hope. I went back on the vitamins and we began TTC again. Thinking back it probably would have been better to give myself a few months to heal physically and emotionally but I was determined and had the okay from my doctor.
In July 2006 we got pregnant again and everything was going smoothly. I was on the progesterone and we had an ultrasound that showed the heartbeat and the baby was growing. I was on bed rest again for the first 20 weeks and was weaned off the progesterone at 20 weeks. Everything was going smoothly. At 8 months pregnant I awoke with vertigo – fell and cracked my wrist. I was taken to the hospital and without going into too much detail I was diagnosed with possible stroke and they ran a large amount of tests and I was hospitalized.
In one of those tests they discovered I had a blood disorder called Factor V Leiden. Everything was going relatively smoothly with the pregnancy. I was having some weight issues – having only gained 10lbs and was 8 months pregnant they were checking to see if the baby was growing -which she was. I was being induced just over 2 weeks early because of the vertigo and possible stroke. Our healthy baby girl (Princess R) was born in February 2007.
Princess R – 7lbs 14oz
This is where the story starts to get a bit crazy. I had 2 more miscarriages (#6 & 7) due to failed birth control. We were not trying to have an other baby yet – however these losses were still quite painful.
In May 2007 I was diagnosed with Celiac Disease and was on a strict gluten free diet. We had wondered if that was an underlying cause contributing to the miscarriages and we’re hopeful that was the answer. I still had the constant vertigo that started in January 2007 and was seeing a neurologist for possible causes. During one of our meetings she mentioned Factor V Leiden again. That was the first time I had heard of it since back when I was pregnant with Princess R. The neurologist thought that could be the cause of my possible stroke when I was pregnant. I was sent to other specialists for that.
My husband and I were ready to expand our family again. I went off birth control in the beginning December 2007 and we began TTC again. I became pregnant the first month but lost miscarriage # 8 at just over 5 weeks. We didn’t take any breaks between that loss and trying to conceive again and we became pregnant again the next cycle at the beginning of January.
I was back on the progesterone and everything was seemingly going okay – baby was perfect. We had made it past 8 weeks of pregnancy and thought everything was going to go smoothly. We had told extended family and friends and had begun taking daily photos of my growing belly – our kids were excited.
Big P and Princess R telling the family about the growing baby
A phone call came to me a few weeks later that shattered me. The baby (Triton) that had made it to 13 weeks was “no longer viable” and he had passed away (miscarriage # 9). I was confused – I had done everything ‘right’ – I was on the progesterone, was on bed rest – everything. I was scheduled for a D&C because I did not want to deliver at home.
The OB who was going to be doing the surgery turned out to be a lifesaver to me. Another miracle that Triton brought into my life. My OB had read over my chart, talked to me for a long time about my history and pegged that I had been diagnosed with Factor V Leiden, a blood disorder that predisposes me to making blood clots.
The surgery was scheduled for April 24, 2008 and I was able to get the answer I needed. When the pathology came back it showed blood clots caught in the umbilical cord cutting off the supply to Triton. He had given me the answer and we had a new plan and a concrete diagnoses for all my losses – Factor V Leiden.
Recovering from surgery, my husband and I were not trying to conceive yet. I did become pregnant (seriously it’s like he just has to look at me to get me pregnant) the next month but miscarried again (#10) likely because I was not healed up completely from the surgery. We were both ready to start the process of adding to our family and met up with my OB again.
The new plan – because Factor V Leiden predisposes me to throwing blood clots normally and any pregnant woman’s risk of blood clots increase anyway – my chances were pretty high. This is the reason for my miscarriages, my possible stroke at 8 months pregnant – but luckily there was something we could do. I was still going to be on the progesterone for 20 weeks because I did have an issue with low progesterone – it was just not the whole story.
I continued with the basal body temping and this time added low dose aspirin (it’s a blood thinner). Once I got that positive pregnancy test – I went on the progesterone and was put on another medication called Fragmin. This medication is a needle that I inject into my lower abdomen – it is a blood thinner that is safe to take while pregnant. This medication was designed to thin my blood enough to stop me from making clots and putting me and baby at risk for miscarriage or still birth.
I injected myself with this needle every day – I was covered in bruises but everything was working. It became second nature to me. Since it is not safe to go into labor while on blood thinners I was placed on bed rest at 36 weeks because I had begun to dilate. The plan was to induce me again just over 2 weeks early – I had to be off the blood thinner to deliver but could not go over 12 hours without the medication or I would risk another stroke. So, the safest thing to do was a planned early induction.
In February 2009 our third full term baby (Baby E) was born perfect and healthy. I was put back on the Fragmin blood thinners and had to continue giving myself the injections for 8 weeks postpartum.
Baby E – 7lbs 13oz
Now, if you are still with me – thank you. It is hard to condense this story into a few paragraphs. I don’t really have a ‘moral’ or ‘message’ to this story except this is my story. It has been a very difficult and extremely painful journey.
It has taken me a long time (and I am still working on it) to accept what has happened and to begin to digest it all.
This type of cancer affects your blood, your bone marrow and then… everything else. Know what sucks even more? The chemotherapy treatment for leukemia. It is so long, so complex that the medical team taking care of Katy wouldn’t even give her the whole plan at once – they had to wait to see if she responded.The first 4-week phase actually lasted for five weeks.
She received two types of IV chemo: an oral chemo, and a spinal chemo. To check the progress of the treatments, she underwent regular bone marrow biopsies and ended up in intensive care more than once.
During the first treatment, Katy asked for palliative care to begin as she wanted to stop all treatment. She’d never really wanted treatment – she had seen her grandpa die of lung cancer and didn’t want to be sick like he had been.
The doctors pulled out all the stops to convince her to continue – brought a therapy dog up to her intensive care bed and let it get up on the bed with her. She got involved in art therapy, music therapy, and had a psychiatrist, psychologist and a pain management team.
She continued with the treatment.
During the first few weeks that she was in the hospital, I developed cellulitis in my ankles that was spreading up my legs and I popped into the ER twice to get treated. During my second bout, the doctors wanted to admit me for IV antibiotics. I needed to be with Katy and declined. Instead, I just put my feet up whenever we were hanging out in her room.
Too weak to walk any real distance, she was pushed in a wheelchair while we roamed the halls, often popping outside to have a smoke. Katy, of course, made two great friends in the smoking area – a transsexual who had heart problems and a pregnant woman, just like she’d made friends on her leukemia floor.
The ICU nurse became a friend of the family and after a particularly nasty side effects of chemotherapy – the lining of her colon separated and shed, leaving her to poop blood for a week. Katy was then put onto a liquid diet, and being my food loving child, our old neighbor made her “stringy roast” which Katy happily ate.
Katy hated that doctor and refused to speak to her, so he and I had conferences in the hallway. Thankfully this doctor was only rotating through the leukemia ward and she wasn’t stuck with him.
When Katy was discharged the first time into her husband’s care, this doctor ordered the removal of the PICC line without discussing it with us which turned out to be a major pain..
When we returned for her first outpatient treatment, they, of course, didn’t get a vein and she had to be readmitted to the hospital. The PICC line became permanent to help treat the leukemia.
The staff at The Clinic was great! Originally, one of the nurses who had a strong personality (and Katy didn’t like) started her chemo treatment but they began to open up and bonded.
The medical assistants were also good friends of Katy’s, and once, her favorite aide (who wore a wig like Katy did), so the medical assistant put on one of the wigs while Katy put on the other. They giggled and took pictures that night.
The same aide on another night made a video of the clocks turning back and Katy wanted to see it. She asked to see the video, but he misunderstood (haha!), so we had to spell out c.l.o.c.k video.
Because nothing comes easy, my husband was diagnosed with throat cancer, living in an AirBnB near The Clinic so that he was able to complete his seven week outpatient radiation treatment. He had been taking care of Rae while we were in the hospital.
While he was away getting his treatment, Katy came home and we decided that we could take care of Rae ourselves. With the neighbors help, we could go to Katy’s long treatment appointments without worry.
My stepkids saw my devotion to Katy and her treatment and felt that I should be there for their father, my husband. I felt that he wasn’t nearly as sick as she and could spend time alone while Katy couldn’t. We’ve only recently mended bridges.
More and more, Katy caught infection after infection and had to spend more time in the hospital. Her beloved PICC line was replaced she got a port placed instead. Unfortunately that too became infected and it had to be removed.
Pain was a major issue for her and while she was in the hospital, she had a morphine pump and a fentanyl patch. I was the one doling out her meds and occasionally she overdosed, necessitating Narcan.
She was in the hospital during Thanksgiving weekend and my brothers (her uncles) came to visit, which she loved. I’d given her a pain pill before they got there and was nodding off. The Sunday after Thanksgiving, my husband brought Rae – who was now ten! – to see her as well.
After that visit, the nurses administered Narcan again after questioning me – and lecturing me – about giving her extra pain medications. They were very nice about it but I felt awful.
Katy then developed a serious fungal infection and was moved from the leukemia unit to intensive care.
One of her ICU nurses made friends with her and visited when she could. That night, when her favorite nurse came by to visit, she told Katy, “see you tomorrow!” to which Katy replied, “you’d better!”
Those were the last words she ever spoke.
Her brother came up for a visit and while he was there the medical staff had to remove her port. Hospice stopped by as they were putting in another line which was very painful, but I’d told hospice that I’d given the go-ahead so that she could get some pain medication.
We spoke to hospice and the hospice staff said it would be hours to days before she passed.
We asked that she could move to a room down in the leukemia unit, where the staff began to say goodbye. We saw them often as they came in to administer medication to make her feel more comfortable.
A sign was put on the door to see the nurse before entering the room; I always wondered what those signs were for. My son and I slept in the room, talking to her and holding her hand before we went to sleep.
When I got up in the morning, I said, “Good morning, Katy” and went down for coffee and a smoke When I returned. I could tell she was gone.
She was so very still.
And like that, she was gone.
I was so glad that our relationship was good during the months that she was sick, but I am devastated that she had had such a rough life and such a tough struggle with addiction.
I felt everything. All of it.
Later, I had to go home and tell Rae that her Mommy died.
Since March 2019, my loving friends, you’ve prayed, danced, fallen to your knees, helped us, looked for help, cooked meals, picked up meds or groceries, bought shirts, made bracelets, hugged, cried. Laughed. Sent positive vibes. Kept us your thoughts & hearts. We are so grateful,
You’ve sorted shirts, made posters, given rides, offered beds. You’ve arranged cow, horse, and dog petting.
You’ve helped my son by being there, taking him places, or letting him hang out. I am forever grateful.
You’ve answered the late night calls.
Deciphered my illegible texts.
You’ve heard the screams, sobs, panic, and silence. You’ve hit every emoji Facebook has to offer. You’ve followed along, shared posts, sent links, looked for help, given directions, suggestions.
You’ve donated your hard earned money, time, friendship and love.
THANK YOU is not big enough.
GRATEFUL is am understatement.
We simply could not do this without support of EACH any EVERY ONE of you.
Through the multiple hospitalizations, close calls, bad news, car accidents, weekly travel to and from Houston Texas so my beautiful daughter could participate in a trial to save everyone after her diagnosed with TNBC.
Last week when we arrived for our weekly chemo on Wednesday, they told us we had to stay. A lot of tests everyday, all day.
Today we “OFFICIALLY” received the news: Dr Twong informed us that Samantha has had a reduction in the tumor they have been tracking. The tumor that grew on A&C chemo [ the red devil]. The invasive, aggressive, metaplastic cancer invading her body has reduced in size.
There could not be better news or better timing.
Yes we still have a very long road ahead, but now there is a a clearly defined road. A brightly lit road that she is paving for everyone after her.
We have three new types of doctors to meet and consult with: Surgical, Radiation, and Plastics. We are so grateful.
This Wednesday she will receive her chemo in Texas and by Thursday we’ll be making our way back to Mississippi. Next Tuesday we’ll return to Texas.
Then we won’t return until a couple days before surgery – probably the first part of October to complete pre-op testing and surgery.
That’s IF all goes well.
In mid to late November, she will start daily radiation at home, on the Mississippi gulf coast.
So my loving friends, you wonderful people. No matter what. Every single second was worth it and we could not have done it without you.
Stay with us.
There’s a lot of, “if this goes this way” type tests and procedures. Please keep doing exactly what you’ve been doing; we still desperately need you. I wanted you to know that you’ve made a major difference in our lives and the lives of every family who hears the diagnosis of Triple Negative Metastatic Breast Cancer.
Having addiction run in your family is one of the hardest thing to shield our children from. Sometimes, we just can’t help our children.
This is part one of a three part series from one of our amazing Facebook friends.
If you want to submit something to us and would rather use email, please email becky@bandbacktogether.com or stacey@bandbacktogether.com. Remember, your story matters too.
My daughter Katy was always a challenge – she’d not left the Terrible Twos – and when she got older, she was diagnosed with bipolar disorder and oppositional defiant disorder (ODD). As much of a challenge as she could be, she was also very pretty, smart, and funny. One of my favorite memories is how she loved to eat so much that she’d eat in her sleep – sometimes she’d fall asleep and wake up and continue chewing. No one came between her and her food.
My very favorite Katy moment was right after she was born, they laid her on me, and she lifted her head and looked right at me. Crazy, right?
I still hold that moment close to my heart – has gotten me through a lot of tough times.
Addiction runs in the family, her father was an addict, and by the time she was five, we divorced. He was a terrible, mean person, but never did anything that kept him from seeing his kids. One of my biggest regrets is that I didn’t just pack up the kids and leave.
By the seventh grade, Katy had begun doing drugs and skipping school.
We fought a lot and when Katy was 16, she told me that she wanted to go live with her dad. Instead of my usual, “you can go when the judge says so,” I said,
“You can go and you can come back if you change your mind, but if you do this again, you cannot come back to live with me. I can’t keep doing this back and forth.”
And that was exactly what happened, she stayed a few weeks and came home. Her father moved in with Katy’s grandfather, who was dying of cancer, and Katy helped out with him and the problems caused by cancer. She decided to stay with her dad and go to school there.
Morphine turned into methamphetamines and our relationship began to crumble.
By then, I’d gotten remarried and my new husband didn’t want her to live with us when she asked to move back in. I enforced my previous statement, telling her that she couldn’t come home.
Shortly thereafter, she moved back in with her dad.
In 2007, she married a nice guy; one who complemented Katy well. She was very manipulative and he was able to deal with it. Unfortunately, after he joined the Army Reserves and was deployed to Egypt, which left Katy alone with my newborn granddaughter, Rae. Her daughter’s birth, of course, was crippled with complications; she developed a uterine infection and a week after discharge, her uterus burst.
After her major surgery, the doctors told Katy that she probably couldn’t have any more kids.
Katy was a fierce mom. She was a good mother – very firm but fair. Rae still has excellent manners and is very well-behaved because of her amazing mother. During her ten day hospital stay, she fought the nurses to make sure she could nurse Rae. Once home, she was in huge amounts of pain. This is when I believe her addiction to opiates began.
With her husband away in Egypt, Katy got involved with an old friend and with her pain pill prescriptions used up, she turned to heroin. Our relationship was still very shaky – when I told her she wasn’t allowed to come to Easter, we didn’t speak for over a year. Even still, she let me see my granddaughter.
Drugs had rotted her teeth and beautiful smile. The poor thing had to have them extracted and get dentures. I was with her and it was gruesome.
For my own mental health, I had to distance myself from her. I couldn’t deal with the drama in her life – especially the drama with her father. He, and I believe Katy as well, had borderline personality disorder. She was a difficult person – always talking, needing help, wanting something, craving love, starved for attention, and it drained my husband and son. I’d try to avoid getting drawn into her drama, but she’d sense me pulling away and she’d draw me back in.
When Mike, her husband returned from Egypt, Mike began using heroin as well and the three of them moved in with my ex-husband.
Both Katy and my son, Chris were very relieved when their dad died because he was so cruel to them. Katy replied to someone who said that “he was in a better place” by saying that “no, he was in hell.”
In 2017, Katy began the process of getting clean and sober and had moved to a city with a friend to get away from her husband who was still using.
She’d gone to the hospital for something and called me afterward, stating that she’d been diagnosed with lymphoma – a kind of cancer.
I didn’t believe her.
I thought she was faking it and using the lymphoma as a way for us to take her in. We had a huge blowout and she turned around and left my house.
Thanks to the heroin, her husband Mike had a bad heart valve and needed open heart surgery, and, being a caregiver, she moved back in with him.
That summer, she ended up staying with us in our cabin in Pennsylvania and I noticed she was tired. Always so tired. She slept so much and so often that I wondered if she was on drugs.
Concerned, we took her to a hospital in Pittsburgh on Father’s Day 2017 where she was diagnosed with Acute Lymphoblastic Leukemia (ALL).
I remember staring at those three awful words written on a whiteboard in her room. She had been within days of dying. Days.
And I hadn’t believed her.
The hospital started her treatment and we had her transferred to the Cleveland Clinic closer to our house. From then on, I was on auto-pilot.
I was a caretaker too: my mom was bipolar which meant that I had to take care of her when I was a kid.
I was the oldest of four and my parents divorced when I was 15, so becoming her caretaker fell into my lap. She’d made numerous suicide attempts and was in and out of the inpatient psych ward multiple times a year.
My dad had a stroke 12 years ago and was in and out of the hospital and nursing homes for seven months before he died. I went multiple times a week to visit, it was nice to spend time with him.
I was raised to be a caretaker.
I stayed with Katy constantly from the moment she had been admitted until the day she died. There were a few nights that her friends would spend time with her so that I could rest. Otherwise, I slept on a chair that converted to a bed. I showered in the family showers and drank coffee from their family lounge
Katy’s first treatment course lasted five weeks and she was stuck in the hospital for the entirety of it. The staff was awesome. They didn’t even mention the track marks on her arms or asked if she’d done drugs.
