Paul's Heart

Life As A Dad, And A Survivor

Stephanie’s Words


Today is the final day of National Lymphoma Month. But for those of us who have battled lymphoma, every day will always be Lymphoma Month, because we have to live with it every day, even after the treatment ends.

My final post of September in recognition of NLM, I wanted to share with you one of the most inspirational stories I have ever heard. I am going to “split” this post with her original words and my commentary.

I first learned about Stephanie from her mother who had learned about me from a lymphoma support web site. Of course, I will always believe that some of the most important support you will have when facing any cancer, is the support from family. There will never be stronger support, than from that of a mother. That being said, when her mother had reached out to me, Stephanie had already completed her treatment, but was struggling getting back to living life. That is all I knew of Stephanie at that point and I encouraged the mother to contact me. After all, who knows more about surviving cancer than someone who has done it for decades?

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Soon after that, I heard from Stephanie. And while we did not really discuss her days fighting Hodgkin’s Lymphoma, we did talk about her emotions and struggles with getting back to a “new normal”.

I have known of Stephanie for well over a year now, following her survival, her advocacy, and her “new normal” as she has moved forward with determination as she returned to college to become a respiratory therapist, quite appropriate for her. I am proud to know Stephanie and her family. And I hope as you read, from Stephanie’s own words, that what was once a horrific and challenging fight with cancer, you will be inspired to overcome any obstacle, cancer or not, and to never give up hope.

I give you, “Stephanie’s Words.”

“I was a sophomore in college at West Chester University and was 19 years old when I found out. I had started to get deep coughs constantly and summer colds. Antibiotics barely phased me.

I went along to school and forced myself out of bed for each class because I was determined to succeed this semester. But each day was getting harder and harder to focus and go to class. I was still coughing, I couldn’t sleep, heart was constantly racing, I couldn’t breathe right walking to class, I had terrible night sweats for some odd reason because me and my roommate made sure our rooms were a cold temperature every night, and a rash all over my stomach that I swore was bed bugs. Creeped me the hell out! Also, sleeping at night on my back felt like I was suffocating. My heart would race fast constantly. I went to the health center at my college 7 damn times. 7 times. Of course again, I had bronchitis or an allergic reaction to something, they told me. I was once again loaded up with antibiotics. It wasn’t bed bugs by the way…

There was one point where I couldn’t even stand in the bathroom to do simple things as brushing my teeth or doing my make up. I couldn’t stand for more than 2 minutes without feeling tired.

I developed a few different skin irritations, which consisted of a yeast infection on my leg and ring worm on my arm. We thought (and doctors confirmed) that this was an allergic reaction to laundry detergents or something in my college dorm. I was, after all, a typical college student, living in the dorms, with every other typical college student from all over.

I started losing weight, I didn’t eat normally. I was getting weaker and weaker each day and started not caring about classes anymore and just rather lay in bed then go anywhere.

Winter break comes along finally and I get to go home and relax for a month. A couple days into break I realize I am really not okay and finally go to the hospital.

Me and my mom went to just get examined and get the hell out of there, but obviously that wasn’t the case. The X-ray revealed a mass that spread approximately 18-20 cm across my entire chest and into my shoulders. One doctor stated, “I’ve never seen anything this massive before.” My family’s world completely stopped as we all struggled to grasp the news.

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I was completely frozen from that point on. I remember them talking, my mom crying with black mascara down her face, the doctors asking if I’d like to see what the x-ray looked like and me responding with ‘no’ because I was so scared to face reality.

I was admitted and the hospital ran more tests to identify the nature of the mass. A thyroid issue? Lymphoma? Something else? We didn’t know for sure, but deep down inside our hearts, we knew it was cancer.

I ended up getting transferred to University of Penn Hospital, which I might add is a wonderful hospital. I got my biopsy there the next day. I died on the table, they brought me back. There were complications during the biopsy due to the size of the tumor and the pressure on my airways and that I was put in the Intensive Care Unit (ICU) on life support.

Next thing I remember waking up to a tube shoved in the middle of my throat and being highly medicated.

I was there for four months after that. I was on an ECMO machine, a ventilator, emergency radiation, a medicated coma, then chemo, then blood clots in my ribs from too much heparin then given lasics, a bed sore, I couldn’t walk, couldn’t go to the bathroom normally, I had pneumonia so many times, My hair was falling out so much I eventually had to shave it, and I was throwing up and drugged up so much you wouldn’t believe it. I’m sure I had more problems, but it all seems like a blur now that I am reminiscing. I mean you’re reading this from a girl that was so drugged up and delusional that I was afraid of the computer screens in my room in the ICU. Apparently I was a tad bit nutty. Oh did I mention no food or water for two months? Two months. They placed a feeding tube in my stomach to survive. They gave me mouth swabs every time my mouth was dry. I remember a nurse left a damp rag near me and I grabbed it to try to suck every last drop of water from that towel to get a least a little satisfaction. She wasn’t too pleased with me after that…

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I had a stent and tracheotomy surgeries to try to open up my airways, but was still unable to breathe on my own and was on a ventilator, unable to speak so I mouthed words and phrases. Recently, the doctors have discovered fistulas on my trachea. They realized that when the chemotherapy did its job and shrunk the tumor, it also caused the tumor to rip 2 holes out of my trachea. This makes me susceptible to even more infections while I continued with chemotherapy and with the hope is that it will eventually repair itself, as there is currently no medical solution to correct the holes. The doctors at University of Pennsylvania Hospital have been researching cases like this in the US and around the world, and have never seen anything like this before. This made their decisions in treating me even harder to make.

When I was put in a coma, they didn’t move me as much as I was supposed to. When I woke up, I had a huge disgusting bed sore on my butt and dropped foot on my left foot. I felt the numbness starting in my right foot as well at the time but the more I moved around it went away, in my right foot at least.

I was forced to get up out of bed for physical therapy. Can you imagine just walking 5 feet and have to sit down because your’e tired?? Yeah, that was me. It was very depressing. I gave those nurses such a hard time for having to get up, but it was such a damn struggle all I wanted to do was rest and be left alone. I quickly learned if I wanted out, I gotta do what they say whether I like it or not.

I remember the most anxiety I had was weening me off the ventilator. I relied on that to help me breathe everyday and the first time I got off it was such a struggle breathing on my own. Learning to breathe to keep my body going sounds so ridiculous now but it was no joke on how scared I was. They would put the oxygen lower and lower trying to trick me and I knew it every time. I’d yell at them to stop because I felt I wasn’t ready but obviously I had no choice.

You know, hospital life wasn’t so bad sometimes. I mean I couldn’t go anywhere so I was forced to make the best of it. I made a lot of friends. The nurses were my supporters. The doctors were my supporters. I was the best case they’ve ever seen and I felt pretty special every time I heard I was making progress. Anyone would feel that way but you could actually see how much they care for their patients and it makes me smile. I heard their life stories, I even gave my own advice to them. The nurses were my main buddies. I will always love them. They delt with me and my crazy italian family? Seriously, kudos to you guys because I can barely take them sometimes!

I feel like living in the hospital strips your dignity in a way though. You can not make your own decisions. You are literally relying on people you barely know to make you better. I think that was the worst thing about being there. I had no voice. I couldn’t wash myself, go to the bathroom with out a bed pan, drink, eat, sleep without someone coming in the room or the machines constantly beeping, forced to go through every chemo, every walk, every surgery. I think my whole family saw me naked several times, not to mention the nurses and doctors. I had no choice.

Around Easter, I remember I wore my first wig. My mom came in and did my make up and dressed me up in my best sweats and T-shirt. Haha then she would leave to go get my grandparents to have Easter dinner with me.

I actually made friends within and outside the hospital with fellow cancer patients. That helped me get by knowing I wasn’t alone. I was the youngest patient in the MICU and that didn’t help too much to boost my confidence.

When I was finally moved to the ‘healthier side’ of the building in Rhodes 5, that was the highlight of my life. I was finally moving forward and away from the MICU.  I had more freedom to move around! I actually had my family take me outside in a wheelchair to breathe I the fresh air and the sun on my face. It was cold out but god, if felt so amazing.

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When I finally was given the chance to finally go home in the middle of April, I was so incredibly happy, but I also had a major fear of my own home. If I were to slip and fall, I’d be done for. My body was still thin and frail, I could seriously harm myself. We decided to get a bed in the middle of my living room since I couldn’t walk up the stairs too well.

I spent a week home and then went in to get chemo for three days. I couldn’t wait to get back home right after I was done my third day so I had my dad pick me up. That night the chemo finally hit me and I threw up and never stopped throwing up till morning. We had to get a nurse to come and help us set up liquid zofran to help me with the nausea. She didn’t like that my pulse was so weak and told my mom to immediately send me back to the ER. Everything I drank, ate, smelled, was making me throw up over and over again. So that was my first trip back to the ER while being home. I spent a couple more days in the hospital until I was free of nausea. That was the worst time going back. I threw up in the waiting room, in the hallway because they were too full of beds, then consistently in the room and finally in my room in the hospital.

When I returned home I was back at watching tv and continually eating more. I’d get chemo again and then go home, thinking I’d be fine again now that we had a full supply of liquid zofran. I was wrong. I had another trip to the ER not as bad as the first time though. I waited it out there and then was discharged home.

Bathing at home was a challenge. I had to go up 15 steps to get to the tub and then get into the tub without slipping and sit on a stool on a rubber mat to wash myself. It was embarrassing to have my mom sit there and wash me because I was unable to do so myself. I couldn’t dress myself after either. I needed help with just about everything besides going to the bathroom.

When I was getting healthier, I was told my a friend of the family that she raised money for me to get a real haired wig in Cherry hill. Dyed to my liking and all. I cried. I finally looked a little more like my old self.

A couple weeks after that, I went to a graduation party for my friends brother and actually met the guy I’m dating now! I remember telling him that my name is Stephanie and I blurted out that I had cancer. He wasn’t phased a bit. He had his issues in the hospital from a car accident 6 years ago, so we had a couple similarities, one being that we are both miracles.

In July, the words I was waiting FOREVER to hear, was that I was finally in remission!!!!! Cancer free, tumor dead, but still unfortunately in my chest.

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So the next step was to collect my stem cells in case the cancer did come back, I’d use them and go through a high dose chemo and be in the hospital for a couple weeks.

After that, radiation. Now the whole process of radiation was very difficult for me. I was in a cold room, topless, and forced to wear a hard mask for 45 minutes and to not move an inch. Every single day for a month. It was absolute torture. I cried so many times because all I wanted to do was move that stupid mask off my face that kept me secured to a cold hard table. I had good days, I had bad days in there. On a good day, I was in and out and no waiting turns for the beam. On a bad day, the beam was in another room and I had to wait longer. I’d fidget, move around and then they’d have to reposition me which made me lay longer with the mask on. It was extremely difficult sometimes.

So after radiation was done on my last day, I had a proud moment with my family and rung the bell I’ve been waiting to do since I got there the first day.

From that point on I have had many ups and downs. I still continue to struggle with nausea, mucus build up overnight, physical and emotional issues with friends and family. Sometimes they can be understanding, sometimes they can’t. It can be very hard for someone who finally had their life together to have a rug pulled from under them and to pick themselves back up again.”

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I will post Stephanie’s entire story as a “page” on “Paul’s Heart”. There are a lot more details and it is quite graphic. But all the more, to hear and see everything that this young woman has gone through, to witness her triumphs today, you have to be inspired.

Stephanie, her family, and friends participate in the annual Light The Night walk for the Leukemia & Lymphoma Society. This is the link to Stephanie’s team page as they will be walking again in late October:  http://pages.lightthenight.org/epa/BucksCo14/TeamSteph.  Myself, I will be walking in our local Light The Night Walk next week.

 

Near The End Of National Lymphoma Month


Tomorrow will mark the end of National Lymphoma Month for 2014.  But just because the month ends, those of us who have to deal with Lymphoma, do so every day.

My goal this month was to do something that is difficult to do, bring awareness to a rare cancer, that honestly gets little attention.  It gets little attention for a couple of reasons.  Lymphomas are a rare cancer.  And the blood cancer I was dealt with, Hodgkin’s Lymphoma, only makes up 1% of all cancer diagnosis.  It also gets very little attention because of its high cure rate of over 85%.  Medicine does not see an immediate need to pursue alternative and safer treatments.  But this is unacceptable for the 15% of Hodgkin’s patients who do not survive like Michael in “Meet Michael.”

Funding for Lymphoma and other blood cancers is difficult to raise because it does not carry the notoriety and effort as the major cancers like breast and lung.  Whereas hundreds of millions of dollars are raised for the big two cancers… this year’s national annual September drive made just over $300,000.  As a lymphoma patient and survivor, that is really sad.  But then again, I believe this to be a result of the lack of awareness.

Dealing with any cancer is complicated both physically and emotionally.  Cancer affects the patient and everyone around the patient.  Cancer involves more than just the treatment.  There are so many issues that come along with a cancer diagnosis:  money, fertility, employment, the future, relationships, health, and more.

I want to end National Lymphoma Month on a positive note.  Tomorrow I will publish a very special story, about one of the strongest Hodgkin’s/Cancer survivors I have ever known.  From her diagnosis to her remission, to the life that she is building today, I hope that you will be as inspired as I am, when you read her story.

Beginning October 1st, I will get back to alternating my stories between cancer and single fatherhood.  The challenge to myself will be complete tomorrow, thirty posts in thirty days.

Reefer “MADNESS!!!”


In 1936, a FICTIONAL documentary was released about the addictive nature of marijuana.  It was called “Reefer Madness”.  I was unaware, as probably most people, that the alarmist anti-pot propaganda was re-released as a movie musical in 2005.  Admittedly, I could only tolerate watching even the original movie for about ten minutes, which was ten minutes I would never get back in my life.  Over my lifetime though, I have seen plenty of films using marijuana, pot, hash, cannabis, whatever you want to call the plant.  And I had never seen anyone smoking pot in these films as anything more than just real happy.  One of my favorite movies is “The Breakfast Club” and there is a scene where the students, who are locked in the library on a Saturday morning for detention, the “stoner” in the film invites all the others to partake in his stash.  It was one of the best scenes in the movie, because for one brief moment, the walls separating all of their differences with each other were brought down, allowing them all to enjoy that moment laughing with each other, without any form of discrimination.

I do not want this post to be about recreational use of marijuana.  I am forty eight years old and in my lifetime I have never heard of anyone dying from using marijuana.  While I do not smoke pot, I am not against anyone wanting to smoke it.  I know I would rather inhale second hand pot smoke than second hand cigarette smoke and die.  At least I will not get cancer from marijuana.

Over the summer, I moved to Florida.  One of several states that has yet to legalize medical use of marijuana.  There are some instances that Florida will allow it, but in general, it has not been legalized in Florida.  There is a proposition, called #2 on the ballot for this Fall’s election.  I fully support the medical use of marijuana, and I want to encourage anyone reading this post to share it.  And if you live in a state that has not made that leap to medicinal use of marijuana and is waiting for an election to do so, it is time to get over the false stigma of marijuana use to allow needless suffering of patients.

Cigarettes kill.  Alcohol kills.  Texting while driving kills.  But this is tolerated because it benefits big companies like Tobacco, Alcohol, and of course the big telecommunication companies.

Chemotherapy has the ability to kill.  Depression meds have the potential to make you suicidal.  Blood pressure pills can kill.  Pain medicines can lead to death.  And then of course there is the overdosing of sleeping pills.  But this is okay because big pharm companies only care about the health of the patients that take the meds and want you to trust that their drug is best for you.

But marijuana does not kill.  Hmmm… what big companies have a stake in marijuana?  Well evidently, now some pharm reps are recognizing the national movement to legalizing medical marijuana and want to be first in line to build their plants.  After all, big pharm stands to be the biggest loser in the legalization of medical marijuana because many patients would no longer need the pharmacy company’s overpriced drugs and would need to replace their revenue with something.  And of course, with approval and success of the medicinal marijuana companies, I agree, it probably would not be long before we followed Colorado and Washington state and legalizing recreational use because once the factories are already established, in theory they would have the biggest jump on mass production.

There is a problem however.  The United States has not legalized the use of medical marijuana.  Instead, they simply allow each state to make the decision, and then the Feds are encouraged to concentrate on more severe issues.  So if it is prescribed, in theory, you could face Federal charges for medical use of marijuana, but not likely.  And if your state approves the medical use of marijuana, that should be the end of the story.  But now it is coming out, well in advance of the election, communities are passing their own regulations, regardless of what the election results are.  Local politicians suffering from NIMBY (not in my back yard) are already passing regulations to deny any medicinal pot shop to open within city limits.  They hide behind the “we don’t need the element that marijuana will bring to our community” attitude.  They totally do not mention the issues with illegal pot use for people who just want to get happy.  But they are against a drug that would benefit patients who are suffering from severe and painful maladies (physically and emotionally) such as ALS, cancer, Alzheimer’s, MS (multiple sclerosis), and other maladies.

So how bad is marijuana?  I have already stated that it is nowhere near as deadly as the big three I listed earlier, cigarettes, alcohol, and texting while driving, and none of those are illegal for recreational use and provide no medicinal benefit.  But let us take a look at some classes of prescription drugs and compare their side effects to that of medicinal marijuana.  You be the judge of which would be more beneficial and safe, and most importantly, improve the quality of life for a person suffering with their morbidity or mortality.

Treating Nausea, Loss Of Appetite, Vomiting, Weight Loss, Muscle Atrophy

The following side effects of common drugs to treat these issues are listed as follows (from Drugs.com):

Less common

  • Bloating or swelling of the face, arms, hands, lower legs, or feet, blurred vision, dizziness, headache, nervousness, pounding in the ears
  • rapid weight gain, slow or fast heartbeat, tingling of the hands or feet, unusual weight gain or loss

Incidence not known (this means that you won’t necessarily be told about these issues on the warning label of the drug)

  • Abdominal or stomach pain, agitation, black, tarry stools, bleeding gums, blistering, peeling, or loosening of the skin
  • blood in the urine or stools, chest pain, coma, constipation, continuing vomiting, convulsions, dark-colored urine
  • decreased urine output, depression, fainting, fast, pounding, or irregular heartbeat or pulse
  • general feeling of tiredness or weakness, high fever, high or low blood pressure, hostility, increased sweating
  • indigestion, infection from breathing foreign substances into the lungs, itching, lethargy, light-colored stools
  • lip smacking or puckering, loss of consciousness, muscle twitching (MS sufferers have enough problem with this)
  • no blood pressure, no breathing, no pulse, numbness or tingling in the face, arms, or legs
  • pain in the stomach, side, or abdomen, possibly radiating to the back, pain or swelling in the arms or legs without any injury
  • pain, tension, and weakness upon walking that subsides during periods of rest, pinpoint red spots on the skin
  • pounding, slow heartbeat, puffing of the cheeks, rapid or worm-like movements of the tongue
  • rapid weight gain, recurrent fainting, red irritated eyes, red skin lesions, often with a purple center
  • seizures, severe constipation, severe headache, severe muscle stiffness, severe vomiting
  • sores, ulcers, or white spots in the mouth or on the lips, stupor, sudden severe weakness
  • swelling of the face, ankles, or hands, total body jerking, trouble with speaking or walking
  • troubled breathing, twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
  • uncontrolled chewing movements, unusual bleeding or bruising, unusually pale skin
  • vomiting (HEY!  Wait a minute!  If you are taking this to reduce vomiting and nausea…)
  • yellow eyes and skin

The list actually continues.  Call me a silly goose, but if I am already suffering from side effects, why would I risk taking something that could actually make it worse for me, when all I would have to do is pop a pill, or even pack a pipe, or eat a cookie with the medicinal marijuana?

Let us take a look at another drug class, for depression.  The object is to make the person not sad anymore right?  Here are some side effects of common antidepressants (according to Drugs.com):

Depression

 

  • agitation, chest congestion, chest pain, chills, cold sweats, confusion, difficulty with breathing, dizziness, faintness, or lightheadedness when getting up from a lying or sitting position
  • fast, pounding, or irregular heartbeat or pulse, muscle pain or weakness, absence of or decrease in body movements, bigger, dilated, or enlarged pupils (black part of the eye)
  • convulsions (seizures), difficulty with speaking, dry mouth, fever, inability to move the eyes
  • incomplete, sudden, or unusual body or facial movements, increased sensitivity of the eyes to light, poor coordination
  • red or purple patches on the skin, restlessness, shivering, sweating, talking, feeling, and acting with excitement and activity you cannot control
  • trembling or shaking, or twitching, back, leg, or stomach pains, blindness, blistering, peeling, or loosening of the skin
  • blue-yellow color blindness, blurred vision, constipation, cough or hoarseness, dark urine
  • decreased frequency or amount of urine, decreased vision, difficulty with swallowing
  • electric shock sensations, eye pain, fainting, general body swelling
  • headache, high fever, hives, inability to move the arms and legs, inability to sit still, increased thirst
  • incremental or ratchet-like movement of the muscle, itching skin, joint pain, light-colored stools
  • lockjaw, loss of appetite, loss of bladder control, low blood pressure, lower back or side pain
  • muscle spasm, especially of the neck and back, muscle tension or tightness, painful or difficult urination
  • painful or prolonged erection of the penis, pale skin, puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
  • raised red swellings on the skin, the buttocks, legs, or ankles, red, irritated eyes, sensitivity to the sun
  • skin redness or soreness, slow heart rate, sores, ulcers, or white spots on the lips or in the mouth
  • spasms of the throat, stiff muscles, stomach pain, sudden numbness and weakness in the arms and legs
  • swelling of the breasts, swelling of the face, fingers, or lower legs, swollen or painful glands
  • tightness in the chest, unexpected or excess milk flow from the breasts, unusual bleeding or bruising
  • unusual tiredness or weakness, vomiting, weight gain, yellowing of the eyes or skin

The list continues on and on.  But also includes “may create or increase thoughts of suicide”.  Isn’t that why you take an antidepressant so that you do not have those thoughts in the first place?

No matter the class of drugs that are supposed to help ease our pains, help us sleep,  keep us calm and happy, make our heart pump properly, every drug carries with it a similar list of things that could go wrong taking it.  We are willing to risk our lives taking big pharm’s prescription drugs.  Marijuana is not without its risks, but nowhere near the level of prescription drugs or the way marijuana has been demonized.

I did not have the option of using medicinal marijuana when I was dealing with nausea back when I dealt with my cancer.  I had plenty of friends who were willing to help me with this if I ever made the choice to do so.  I did not have the option of using medicinal marijuana when I was recovering from my heart surgery, or dealing with the many painful issues of my long term survival.  But I am sure that would have been better than taking all the opiates and other addictive pain killers to control my pain.  Do not get me wrong, I needed my pain controlled and I am thankful that those meds did their job.

But as I watched my brother-in-law whittle away to nothing but a shell from the ALS that would take his life, as I watched my father fade away in extreme pain to lung cancer, I cannot help but wonder, how much more humane the ends of their lives would have been, had it been legal to give them medicinal marijuana.  My father towards the end had been given Marinol, a form of the medicinal marijuana which was meant to increase his appetite which had dwindled down to nothing.  It did help with the appetite, but was not enough to deal with the pain.

It would be a shame to deny another humane option to treat those who suffer from painful debilitating and fatal issues, just because someone else is suffering from NIMBY when in reality, the majority of us already have it in our backyards currently illegally.  But where are the people screaming about enforcing the law on illegal pot smokers (I do not suggest that because I believe our system is bogged down enough on this particular war on drugs)?  And if you do not support medical marijuana because you are afraid of the seeking and approval of recreational marijuana, then you are unnecessarily making people with ALS, cancer, MS,Alzheimer’s and many more suffer from their diseases.

It is my hope that Florida residents do vote “YES” to Prop 2, legalizing medicinal marijuana.  There are just too many ill people who would benefit from its use.

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