Stem Cell Transplant ~ Relapse and Hospitalized Part III

Dr. Testori approached me staring at my chart, he didn't care to see me, my pain, nor my name. I began trying to focus on the doctor as he came in, but I felt so confused from the vertigo...and being in a foreign hospital made me uncomfortable, scared and alone. I wished I was back home with my neurologist and near my kids.

"How are you feeling today Ms. Solimanto?"

I thought, how do you think I feel? And like you care how I feel! I felt like smiling and saying "great" just to be a smart ass, but I didn't.

"Fine, thank you."

"I see you are on a lot of medications."

"Yeah, I guess I am."

"Well, you may want to consider going off some of them before you begin the transplant process."

I thought, huh? What? How could I go off of any of my medications? They were prescribed by various specialists for my conditions. I thought I needed them.

I replied, "I don't know which medications I should stop...I thought I needed all of them?"

Dr. Testori replied to my question with a question, "You need all of this pain medication?"

My eyes opened big...what was he getting at? That I wasn't in that much pain? He's an immunologist, not a neurologist or a pain management specialist..Has he even seen my MRI? Does he know that I'm riddled with lesions all over my brain and spinal cord? Can he fathom the pain I was in? Or does he see that I look fine...like everyone else...? I thought what an asshole..what a typical response from an uneducated person..I began to get pissed and uncomfortable.

I replied defensively, "My doctors prescribed it to me...it helps with pain. Trust me, if I didn't need it all, I wouldn't be taking it."

"Well maybe you have too many doctors, prescribing too much medication.."

I thought was that a question..or was he implying I was a drug seeker? I wasn't taking these drugs for fun! My MS is not a joke...I put my head down and began shaking it from side to side...

"Are you implying I'm a drug seeker?"

"Are you?"

"No! Do you think I take 13 prescriptions for fun? Don't you realize all of the side effects and how they make me feel awful?"


"You have to remember that you will be on many more medications after the Stem Cell Transplant...I just want you to be aware of that."


"I know..I read the handbook."


"Lets begin you on Solu-Medrol for the relapse and coumadin to prevent clots from forming."


"Okay, but I'd like to begin physical therapy right away."


He walked out and didn't respond to what I said. I felt humiliated and degraded. I'd never been asked or accused of being a drug seeker, by any doctor. Why would he be thinking this? I've never abused any of my medications...and my doctors had prescribed it all. I didn't understand why he'd think that. After all, the pain specialist I saw a few months ago advised me to start taking methadone! Although I took the prescription he handed me, I never filled it. I researched methadone, and it came up as drug used not only to treat severe pain, but also for recovering heroin addicts. I didn't want to take such a powerful, highly addictive drug as methadone. Although I knew it would be more effective at managing my pain, I didn't care. I was more concerned with the side effects and its addictive properties. Should I have told the doctor that? Why am I defending myself and why am I so defensive? 


I began to feel very depressed...I didn't know what to think anymore. I thought, I wanted this Stem Cell Transplant, but I was becoming weary of the doctor's comments. If this was the second time meeting him..what was he going to be like in the future? I started to breathe deeply and tried to relax, but his insulting comments were running through my mind, over and over again. 


I knew Dr. Testori was only an assistant...but I began to worry and wonder, how many more conflicts would I have with him? 


I also began to wonder...Should I still have the Stem Cell Transplant....? 


Read the beginning of this story here.
Read the second part of this story here.

Beginning the Stem Cell Transplant ~ Relapse and Hospitalized Part II

I was admitted that night to Northwestern Hospital because I was having a relapse. I couldn't believe it...I had just left Albany Medical, came to Chicago to begin a Stem Cell Mobilization, and I'm back in a hospital because of an exacerbation! I couldn't wait to have the Stem Cell Transplant. I wanted to be relapse and hospital free.

The next morning when I awoke, my symptoms were much worse. I not only had vertigo, but I was having trouble walking once again. The muscles in my legs felt tight and hurt so badly, I didn't want to use them. I attempted to stand up, but my legs shook violently and my right ankle refused to drop to the floor, making it impossible to bear weight on it. I flopped my body back onto the bed.

My arms quivered fiercely and hurt extremely bad, and my hands torqued tightly into the shape of a claw. I could barely move them, much less open them.

I began to panic...I didn't know how I would be able to use a cane or a walker, if I couldn't use my hands.

I knew I had to begin physical therapy right away to help lessen the spasticity and keep my body moving. I needed someone to push me through the pain and help me use my hands so I could begin walking again.

However, another part of me, longed to be left alone. I wanted to draw the shades, lay in darkness and let the world fall apart around me. I didn't want to feel the "light" or "hope." I didn't need to feel anything anymore...I was in so much agony, I yearned for it all to end. I gasped for air... and choked down my tears. All I knew was I wanted to die.

Just then, I felt a severe migraine pain radiate over the left side of my head, and deep into my brain. I closed me eyes and my mouth opened wide to scream...but nothing came out.

I had been having migraines daily since I had brain surgery just 3 weeks ago, on February 15th, for trigeminal neuralgia.

The immunologist Dr. Testori came into the room...with my chart in his hands. He was one of the doctors which would be handling my Stem Cell Transplant. I felt my body shudder in disgust at his presence. I never forgot meeting him several weeks ago...He talked and looked at me with beady eyes and his words were dripping with disdain when he spoke to me. He treated me with as much sensitivity as a lab rat! He didn't care how I felt, what my symptoms were or what my name was because I was only an experiment. I was number 89 to him, and nothing more.

Tomorrow I will continue the story...with Dr. Testori
Read the beginning of this story here.

Stem Cell Mobilization ~ Preparing for Hell

It's March 6 of 2008, the day before I begin a clinical trial to treat multiple sclerosis. Tomorrow I will receive my first dose of chemotherapy, in order to have the Stem Cell Mobilization. I had no idea of the torturous months which laid ahead of me. I transformed from an independent woman...to a helpless, frail, human guinea pig.

I would begin with one dose of Cytoxin (chemo), then I'd inject myself with Neupogen for five days, which is actually E. Coli. The objective of Neupogen, is to help my body re-build red blood cells, which are to be harvested, the blood is then prepared for lymphapheresis (where lymphocytes are purified), then I receive 4 more rounds of Cytoxin over four days...which annihilates my immune system...then I'd receive more Neupogen and then re infused with the purified blood, from the mobilization. I had only read of the pain I would endure, in the Stem Cell Transplant Handbook, but I had no idea...how much I'd suffer.

I was on a whirlwind of emotions...one moment I was excited, happy, and full of hope. However, just a few minutes later I was frightened of the complications which could occur. It was strange...I wasn't afraid of dying...I was scared of what could and would happen to my children, and of all the new conditions I could develop from having this done. I couldn't imagine my life any worse then what it was. I was gambling with modern medicine and doctors who had a "God Complex," versus mother nature and what my body could handle.

I remember that evening I was in Chicago, it was cold, windy...and there seemed to be danger lurking all around me. I was paranoid...in the face of every stranger, I couldn't see humanity. I began to feel meek and humble, as I limped to the next city block. I was looking to waste time...I buried my face into my scarf, I tucked my hands into my coat, my neuropathy was burning from the fierce cold wind. I was trying to make it till tomorrow...searching for courage within myself to face the hell that lied ahead.

Beginning the Stem Cell Transplant ~ Relapse and Hospitalized

I couldn't believe it, I went to Chicago to begin the Stem Cell Transplant and had a relapse! In fact, I had just left the hospital back home in Albany because I was admitted for an exacerbation. I wondered, if this hell would ever end.


I felt fine and was getting ready for the Stem Cell Transplant Immobilization, where I'd begin with one round of chemotherapy (Cytoxan). Then I would inject myself for 5 days with Neupogen, which is actually E. Coli, to build red blood cells to be harvested.


However, before I began this I first had to deal with an unexpected relapse. This exacerbation was the most horrible and frightening yet. I was in Chicago, in my little kitchen in the Seneca Hotel, and began to feel very dizzy...I got weak in the knees, and the room started spinning. I don't know what was worse, being away from home and not being able to see anything, or not having any of my family near me because I was 1400 miles away.


I suddenly fell to the ground! I was shaking with fear...I didn't understand how this could be happening right now. What was happening? Where was I? I couldn't see what was around me because everything was spinning.


I took a deep breath and sighed...I knew I was the only person who could help me. I didn't want to scream like a baby..I was an adult having a serious problem. That didn't mean I could act like a child...and the situation wasn't life threatening and didn't require an ambulance. I thought, "be strong, you have to do this, there's no one else here, but you."


I got on all fours, and crawled into the living room like a dog. I found the coffee table and searched it with my hands to find my cell phone. I pushed the green button and it dialed Dr. Burt's office. I told the receptionist, "I had an emergency and needed the doctor to call me back immediately because the room was spinning!"


She told me I should call 911. I told her I didn't want to...this wasn't a life threatening emergency...just a scary one.


The doctor called me back in just a few minutes.


"Ms. Solimanto, you need to get to the emergency room right away!"


"I know, but that seems difficult considering I can barely stand...and the room is spinning."


"Then you need to call 911!"


"I will be arriving at the hospital shortly, but not in an ambulance."


"Okay, I will meet you there." Dr. Testori hung up, as did I.


I crawled over to what kind of looked like the front door, grabbed the door knob and pulled myself to my feet. I started praying..."Dear God please help me." I opened the door and went to the elevator right in front of me.


I put my hands onto the wall and started searching for the button to the elevator. I knew once the elevator reached me, I'd be okay. It was a five star hotel and had an elevator boy.


I scratched at the wall, until I found a button and pushed whatever I felt at my finger tips....


"Going up?" He asked.

"No, down. Could you please help me too...without making a scene? I feel really dizzy.."

I reached my hand out and he grabbed it, leading me into the elevator. I grabbed onto his arm and held on. I didn't want to fall. "You don't mind if I hold onto you?"


"No, not at all." He replied.


He led me out front and flagged down a cab for me. The bell boy assisted me into the cab and told the cab driver to take me to Northwestern hospital and to make sure I got help in.


I was counting on people near me, that I didn't know to help me. I wished someone I knew was there, I felt extremely insecure and frightened.


The cab ride was a blur...it looked like a stream of different colored lights. I felt as if I was extremely drunk, but I wasn't...and I felt like crying...


The cab driver arrived at the hospital, went in and grabbed a wheelchair...he helped me into it. I thanked him profusely, for being so kind...He wheeled me in and got help.


I remember the receptionist wheeled me to the corner of the waiting room....I felt alone...so alone...


I closed my eyes and felt the tears roll down my cheeks...and asked God, "Are you there?"


A link to a newspaper article describing my Stem Cell Transplant.
Another link to a previous post of mine, which also discusses the stem cell transplant.

The Beauty in Tragedy

Ever feel like everything in your life has happened for a reason? I do...I believe that every occurrence, regardless of how tragic, had a purpose. You may not agree with my statement, but I will show you how I have come to that conclusion.

When I was 16, I moved out of my parent's house because of the abuse I suffered. I moved in with my boyfriend, who became my husband when I was 18. I got married to appease my father because of our family heritage and our religious views. Shortly after I was married, I  had my son, James. I considered giving him up for adoption because I felt like a child myself.

A year later, I fell out of a moving car (as I stated in an earlier post). I believe this was to prepare me for the pain I would endure in later years.

Shortly thereafter, I had my daughter Veronica, and once I again I thought of adoption. My husband wouldn't let me consider that option. He stated at the time, "You can't put her up for adoption, I won't allow that." I was forced once again to take care of another child, and I had a premonition my husband wouldn't be there in the future, helping me raise these children. You may ask, why was having these children so young important? I believe that now, I may be sterile from the stem cell transplant. Besides, even if I was to get pregnant now, it could initiate a relapse with the MS. I couldn't go back to that disease and I am happy to have my children!

I continued on with college and had to alter my degree course. Before I became pregnant, I wanted to go to college to be a psychiatrist. However, I knew that wouldn't be possible after the birth of my son. I changed my degree to psychology because I figured I would have less collegiate years. However, I still continued with my English degree as a second major. I never could give up my passion for writing, as you can see.

Shortly thereafter, I encountered blindness (as I stated in a prior post) and was diagnosed with multiple sclerosis. After being diagnosed, I had to give up my business, my house, my money and learn to live a humble life. This prepared me, for the artist life I live now.

I was home more often after my diagnosis and I had the time to pay attention to what my husband was doing. I depended on him at this point to run my business because I was no longer able to. It was December, I was 22, my Christmas kiosk was in Barre, Vermont, and my husband was there so I could be home resting. However, I had a problem, the kiosk wasn't making any money as it did in prior years. I decided to drive out there, although I could barely walk, and see what the problem was. I learned Jimmy, (my husband), was cheating on me with several girls and the money was spent on wining and dining them! I couldn't believe it!!! When I needed him most....he was stabbing me, our children, our home in the back! Several months later, I filed for a divorce.

Not only did I lose wealth, but I got a divorce! How could a divorce be good? I know that if I never got sick, I would have never slowed my life down and could of never realized the animal I married. I was forced to evaluate my marriage and realize of its ill effects, on my children and I. I was too busy prior to my illness, to slow down and see the creep I married.

I felt alone, scared and isolated...and that's when I started dating a man, who date raped me! I still scream...and shudder inside at the very thought of this! It made me feel dirty, used, cheap, disgusting...and I wanted to crawl into a hole and die!!!

I'm sure you must be wondering what I could of learned from this? I gained strength....and I needed every ounce to annihilate my disease alone...and become as independent as I needed to be and face what lied ahead!

Then of course..there was Jarrett...my fiance whom died...in my home...the morning after Thanksgiving....
Although he still brings tears to my eyes....I learned from Jarrett the greatest lesson...He told me, "Never give your children up! You may not know it now, but they give you strength! If you lose them...you will regret it for the rest of your life!"

He told me this when my disease had taken a turn for the worse and I was considering of giving my children away. If I hadn't met him...I may have lost my children...whom are my heart...and my courage to have the stem cell transplant....

A few years later I had my stem cell transplant. This was the hardest thing I ever had to do! Not only did I spend 22 days as an inpatient by myself in Chicago, but I had to go through months of rigorous testing...to be admitted. If I wasn't prepared by every tragedy I was faced with prior to my stem cell transplant, I know I wouldn't have had the strength, courage, determination or will power to do it.

Even after my stem cell transplant, I still faced yet another mountain before me...trigeminal neuralgia. Trigeminal neuralgia is nicknamed, "The suicide pain." The medical committee considers it to be the most painful conditions in the world. I remember seeing countless doctors...from neurologists to pain management doctors....no one could help me. I spent as much time as I could withstand, reading about my condition and the options available to treat it. My option was simple...brain surgery. I read of all the risks associated with having the an operation preformed on my brain, but I didn't care. The pain was unbearable...and I came to understand its nickname because the thought crossed my mind. I remember seeing the neurosurgeons at Albany Medical Hospital and asking them to preform the surgery, which required drilling a hole into my head! The doctors refused because they were frightened by the risks associated with the surgery. I needed relief from the pain...which literally felt like a sledge hammer hit me in the left side of my face! I'm not exaggerating...the pain was truly that bad....I thought, the suffering and pain would never end.

I begged God to have mercy and to help me find a way...That's when I had read up on Gamma Knife. This surgery would have to be preformed by two neurosurgeons and a mathematician. I went to Syracuse, the nearest place which offered this treatment.

I had the Gamma Knife...and it worked!!!...I am pain free!!! Yay!!!

I decided to join my local YMCA and exercise my legs each day I could use them...and live life to the fullest.  To enjoy each moment...every breath of air...every second of every day...to notice every minuscule thing about everything..the way light looks when the sun hits a leaf...the gradation of shadows..the rainbow of colors in every element of everything...the reactions in every facial expression...I see, hear, taste, and touch everyday of life to the fullest! I am grateful of tragedy I endured because it has made me a stronger, wiser, loving, grateful, unique, creative and mischievous.

I know how hard life can be! That just when you think things will be okay...they're not. When you are facing yet another problem or task to deal with...you need someone most, but they aren't there for you.

Take heart, find the courage within yourself...To defeat everyday... And do everything humanly possible to help yourself.

Don't look to others...Look within yourself! For its in your weakest darkest moment of your life you will find the brightest light of hope.

All you have to do is try...and never give up...because once you stop trying..you have failed.

I am living proof, of light, in the darkness...

Going to Chicago - Feeling Dead Already

I watched the fireworks from a friend's rooftop tonight, in Albany. It was an amazing view! Every explosion from each firework, brought back memories and thoughts of why I'm so happy to be alive. How blessed I am to see the fireworks...to have been there...to breath. I once again celebrate life and feel as though I've cheated death.

I remember laying in the bed in Chicago, at Northwestern Hospital, for 22 days, when I got my stem cell transplant. The 22 days were long, exhausting, painful and heart wrenching. I felt as thought I was being torn from the inside out.

However, before I began this 22 day course at the hospital, I had to visit numerous doctors and receive medical testing, to see if I could be accepted into this clinical trial. The trial had many parameters I had to meet. The parameter I was scared of not meeting, was whether I was considered relapsing remitting MS. My disease was so bad at this point, I was admitted to the hospital every 2-6 weeks! I couldn't walk at times and I was in agony with pain. My neurologist was beginning to think I was entering the next phase of the disease, secondary relapsing remitting. After each relapse I was left with residual symptoms. For example, after one of my relapses in which I couldn't walk, the residual symptom was my right leg dragging behind me. The doctors were pressuring me to use a cane at all times, but I was so embarrassed every time I did. People would stare at me, and I felt so stupid, embarrassed and distraught because it was though I was screaming, I'm handicap! I was only 28 years old..

I had to meet the neurologist at Northwestern Hospital and receive an MRI to evaluate the stage of disease. My disability was obviously growing worse, and I knew entering the clinical trial could be a problem!

I was frightened, I needed this treatment. All of the other multiple sclerosis treatment options had failed. I tried Avonex, Betaseron and Copaxone, but never tried Tysarbi. Tysarbi had recently become available as a new drug therapy for MS. After researching this drug, I realized how bad it could be for me because when you stop taking the drug, your MS could become 3 times worse. I couldn't imagine my disease becoming that much worse! The other problem was I couldn't receive Tysarbi when I was receiving corticosteroids and I was prescribed steroids every time I was admitted to the hospital. Obviously this was not an option for me.

I discussed my treatment options with my neurologist, Dr. Lava. He understood my concerns and fears of trying Tysarbi and advised that I may want to consider my last treatment option...chemotherapy. I was scared of chemo because I could only receive it for up to 5 years, before I couldn't use it anymore because it quickly damages the heart. So as you can see, my options were slim, either I received the stem cell transplant or I got chemo.  Both options had serious side effects, which included death, and they both meant I was to use chemotherapy. However the stem cell transplant offered hope to my disease. I thought if the stem cell transplant didn't stop the disease, at least it could slow it down.

After all, I had two beautiful children whom have never really had the chance to do anything with me. I couldn't play ball with them, or draw, or take them to an amusement park. All I could really do was lay down, sleep and talk with them,...but that's not what a mother is. I was suppose to be there for them and help them grow...and I sure as heck couldn't do that from a sofa!

My children needed me, and I needed them...

I knew I could die from the stem cell transplant, but I felt like I was dead already!

I limped into the neurologist's office in Chicago....

Scared....frightened....but determined....I needed this...my kids need me....God help me...

I knew this was my last hope!

Life and Death Experiences

I was watching a movie tonight, at the Spectrum Theatre, in Albany, NY, and left half way through it. I felt as though I needed to be creating, writing, drawing, painting....I needed to "let out" an emotion within me. I have lived a story which needs to be told and which co-insides with who I am: edgey, gritty, witty, fantastical and beautiful. I can't remove it no matter how hard I try because something within me begins swell and  my emotions and pulse race. I can't control the creativity. When I feel the need to create I become anxious, distraught and distracted...my mind goes anywhere and everywhere. I lose control...one thought streams into another idea. First the idea becomes drawing then a painting. Then the painting manifests into sculptures and then an installation, sometimes with moving parts...with streams of words and an outpouring of emotion into every split second of thought.

Everything is well thought out, and if there isn't a preconceived thought...there's always a preconceived emotion. The preconceived emotion, is what I'm always harboring within me. They are the emotions I haven't painted or sculpted out yet in my mind. The emotion becomes more complex when I combine feelings of past, present or future together. These emotions have made me what I am today.

My past experiences are what lights my soul and sets it afire. To have been so close to death so many times in my life has made me more appreciative of not only the good in the day...but the negative, dark, crazy times we experience. I've always enjoyed the darker places because of  the light I find within them. For when we feel the light in the darkness, its always more rewarding and beautiful, then any other time. I think that's why I crave mischeif...I'm always looking for the unexpected spontaneous things which can occur. However, after life and death experiences we realize how easy it is to die...even if not physically, but mentally we can die. I use to deal with my disease and the prison it built around how I lived because I stayed in all the time, either of pain, paraletic limbs, facial pain (trigeminal neuralgia) and every other medical experience I suffered. However, now today...I live! I'm free of disease and pain, and I feel this is what allows me to appreciate moment of everyday.

Then of course there's the loss of a loved one....and anyone who has experienced the loss of someone whom was very close, and whom you loved dearly... knows how terribly this effects you. My fiance died in my house, on my sofa, eating a fentanyl patch. The transedermal patch was never meant for ingestion...but what does the ass do when I went to sleep that night?  He placed the synthetic narcotic patch into his mouth!!!!!!!!!!!!!

I remember the morning this happened....

I awoke the morning after Thanksgiving to my two children telling me, "Mommy get up...Jarrett isn't waking up..."

"What?!" I sat up quickly...

I hear Veronica's voice tremble..."Mom there's something wrong he won't get up... "

I jumped out of bed...and ran down my short hallway..and in those 2 seconds before I saw him..I could feel my heart punding and bursting in my chest....I felt a rush of thoughts run through my mind....I knew something happened with the drug he was fooling around with. I remember the night before I fell asleep arguing with him about the fentanyl he was taking. I was begging him to stop...telling him his voice was slurring and he wasn't even aware of it. I exclaimed, "He was fucking with the devil."

I turned the corner at the end of the hallway and saw him....slumped into the sofa...his head tilted uncomfortably to the side...his lips were blue and his palor bluish grey ...I knew he was dead...

AHHHHHHHHHHHH!!!!

I examined him quickly...searching for a pulse in his neck, placing my head against his chest looking for a heartbeat, pulling his eyelids open to see his eyes were rolled up into his head. I began to lay his head down onto the sofa becausse I needed to preform CPR...I attempted to postition him, but his body felt so heavy...so lifeless I could barely move him. So I pushed his body onto the  ground....opened his mouth and saw a piece of plastic in it...I put my finger into a "C" position and cleared his airway...out came a piece of plastic...the fentanol patch!!! I grabbed my phone, and called 911.

"Operator I need an ambulance now...My boyfriend he's experiencing a drug overdose."

"Mam, you need to calm down..."

"I need an ambulance now! I live at 508 London Square........NY...I need help now!"

"Mam you need to calm.."

"Calm down? No I do not need to calm down...My boyfriend is dead!!! I need to preform CPR!!! You have my address right?!"

"Yes mam we do...Someone is on the way now."

"Go downstairs and wait for the policeman..."I screamed at my kids...

I dropped the phone...and began breathing into Jarrett...trying to get his chest to rise and fill with air...instead I felt and heard liquid rattling ...and his chest didn't rise and fall...I began to get frantic...and become more scared...

I knew he was dead..my heart sank into my stomach and I began to shake....I climbed on top of his chest and began pushing with my palms..counting 1..2...3...4......10. Then I returned to his side to preform further mouth to mouth...I felt not one beat from his heart and his body felt cold...lifeless...dead....

A state trooper showed up within minutes and came in...He knelt beside me and told me to move...He pushed on his chest so hard...that after a few times, vomit and blood began to come out of his ears and mouth....I began freaking....

"Mam, you need to give him mouth to mouth..."

"I put my mouth over his and began to blow, but I wasn't getting past the vomit, blood and mucus that now filled his mouth....So I opened his mouth and cleared out his passageways and began again..smelling and tasting his blood and his vomit in my mouth...I could feel my blood curdle inside....How I wanted to cry....scream...and let out the emotion that was consuming my body...I was looking at the man I loved...dead...I could barely believe what was happening to me...

What was happening? was I going to awake from this nightmare? Oh, God please don't let this be true..please don't let this be true..."

The paramedics arrived after a few minutes....they immediatly took his O2 level and his blood pressure...they said he must have been dead for hours.

"Aren't you going to shock and revive him!?"

"No, he's dead...If we did that he might come back brain dead."

I started screaming, "No!  NO!    NOOOO!!!!     

Bring him baaaack!!!!"

The state trooper next to me..grabbed me, lifted me up and forced me into my bedroom....Where I began to scream...and cry...

I didn't stop crying day and night for 9 months, unless I exhausted myself into sleep......