Dream Scenerio Come True

~ Colleen ~ Leave a comment

I am a couple of days late in posting, but after reading you will hopefully understand why.

Friday – I am at work when my cell phone rings.  It is Chicago and my heart just about stops. It’s too soon, they changed their mind, insurance denied right away…. Well. It ends up that it was the billing department. They needed my social security so they could submit the request to insurance. OK, I calmed down a bit and went on with my day knowing it should be a month or two before I hear.

Monday AM – Rosemary has been running a fever for 2 days now and I make an appointment for her to see her pediatrician. Fran (my MIL) and I are driving her there when I get a call from Aetna. I return the call knowing that she needed some information. My caseworker (who is now referred to as my Fairy Godmother) said she was just calling to tell me that I was APPROVED FOR A STEM CELL TRANSPLANT! What? Fran and I burst out in tears utterly confusing this poor woman. I swear I made her repeat it like 5 times. Then she tells me that my plan will cover up to $10,000 in travel. WHAT??? My parents are in Las Vegas, yet I’m the one that hit the jackpot. How can this be? We get to the pediatrician and call my parents. Rosie tells them I was approved. They freak out, I freak out, Fran freaks out and now we have to go into the doctors office. We make it, but poor Rosie has a virus and it will most likely be a long week for us. I get home and call The nurse at Dr Burt’s office. She thought I was only approved for the evaluation. So she went back to the finance team and I sent her the approval letter. She calls back and says we are a go for pretesting. I ask the dreaded question… When will I know if I will be treated off trial (go right to transplant) or on trial (randomized.. 50% go to transplant after pretest and the remaining 50% go to the control arm and are treated with medication. The control arm patients will get transplant WHEN they show signs of disease progression). She said I would hear after pretesting. Both are good, but obviously, I want to get the transplant as soon as possible.

Monday Afternoon – The nurse calls back about scheduling. Tells me she is going to get me in ASAP, but needed some info about my medications. We talk for a while and I ask her if I pack assuming I am going right to transplant. She was confused and I said.. If I go to pretest and then get control arm, do I just go home. She says “Colleen, you are off trial. I thought I sent you an email”. No, but who cares. It is happening. I will beat this disease that has crippled me in less then 2 years. I am going to Chicago…. And probably soon. I asked her what timeframe we are looking at and she said she was still trying to coordinate so she would email me Wednesday. Dream scenario come true.

There is no medication washout period for Copaxone and IVIG, so I will get treatment right up to travel in the hopes I stay flare free. It is so surreal. I am overwhelmed at all the love and support my friends, coworkers and family have shown me. It is so comforting when dealing with the unknown. I am blessed to work for and with people who truly care about me and my health, that makes a world of difference.

For now, I wait for a scheduler as I recover from a very hard IVIG treatment this week. Those of you who are my adoption friends know, we can wait like no others!

Colleen

That NES is a YES!!!

~ Colleen ~ Leave a comment

I boarded the plane home today. Crying through my swollen shut eyes. Pushed through the headache and anxiety and boarded the plane. I watched Downton Abby. Paid the $8.00 for Internet so I could see if the doctors office may have emailed me. They didn’t. The 3 hour flight went rather quickly. As soon as we landed, I turned on my phone and saw a voice mail from Chicago left at 8:58. I took a deep breath and listened. It was Dr Burt’s nurse Kate. She was calling me to tell me that he reviewed my file again and wanted to offer me the treatment. She said she wasn’t sure if it would be on or off study, but wanted to get the ball rolling with Aetna. I didn’t even listen to the whole message. I think I screamed I GOT IN! I don’t know, but when I looked up, half the plane was crying and after I got off randomPeople were hugging me in the airport. I got off the plane, quickly called Kate and gave her the ok to get going. So. Here goes it! God has been very good to me.

Colleen

It’s a Nes

~ Colleen ~ Leave a comment

Well, Chicago was very different then I expected. I had a very long MRI on Tues and Wed at noon I met worn Dr. Burt and Dr. B. The main doctor was very short and almost rude in that way that doctors can be when rushed and doing very important work. He was concerned with my neck, said I have buldging disks (who knew) pressing on my spinal cord. This could be causing the neck, back and leg issues. He really wanted to compare MRIs and have me meet with his neurologist. I think he saw the tears forming in my eyes because he tried to talk about my jewelry and ease me a bit. I held it together, but did not get the feeling a yes was in my future. As soon as he left the room, I burst into tears. It is hard to explain why. He made it seem like the MS on my brain was not to the degree he has seen in others. This is normally a good thing, but I can’t tolerate the existing medications. I am nearly out of options and the fact that all my future hopes were pinned on this was and still is completely overwhelming. To my horror, his nurse came in and caught me in the middle of my ugly cry. Oh well. We left his office and found our way to Dr B. The whole trip is a blur. I barely remember getting there. I remember using a ton of tissues and trying to hold back a nervous breakdown. I will say I loved the neurologist. I loved his nurse even more. He was amazing with me and his nurse was so compassionate that she asked the doctor if she could stay with me for my appointment. He actually asked me about my MS. I asked him about the disk. He said the neck down could be from the disk and the arthritis in my back (both are news to me), but the eye, cognitive, vertigo and all else is MS. He still had to review the disks with Dr Burt and they will get back to me. He said clearly I have MS issues and clearly I have back issues. Both need to be addressed. It’s just so hard. He left me saying, It is not a no and it is not a yes…. For not is a NES. So I wait and see. Should hear within a few days. I leave my life in Gods hands as always and pray he had a cure for me in His plan.

Colleen

We landed in Chicago

~ Colleen ~ Leave a comment

Yesterday, my parents and I landed in Chicago.  We made our way to the hotel where I immedietly took a 3 hour nap.  😃. After waking up, we decided to tour the appointment locations so we would know where to go.  This proved to be genius since it was a bit confusing and I nearly ended up in gynecology….  After that we got a quick bit to eat and went to one of my favorite places Eataly (yum). We came back to the hotel to fill out paperwork for my MRI and get ready for today. Today’s agenda:

11:00 – hotel tour for long visit
12:30 – MRI of brain and back with and without contrast
3:00 – another hotel tour for long visit

We are trying to find a good hotel for my parents to stay if WHEN I get the transplant.

Well, that’s all fot now, I’ll keep you posted!

colleen

It’s been a while

~ Colleen ~ 1 Comment

Well, it’s been a while since I have posted. Haven’t published this site to anyone (with the exception of one of my BFFs Mary). I received my appointment date in November. I was to be in Chicago by 1/27. That seemed a world away…. It still does, but in fact, I will be there in less then 48 hours.

I continue to be amazed everyday by the love and support of my family, friends and coworkers. I get emails, texts and Facebook messages from friends all over the world pulling for me. I can’t express the overwhelming sense of optimism it has given me. I won’t lie, I am nervous. This appointment(s) is an event that could WILL permanently change my life. That is a big pressure to put on 2 small days.

So, if WHEN I get the news that a stem cell miracle is in my future, I will publish this. I will document it and I will pray to help even one person the way that those who have already had HSCT have helped me.

Until Monday… Wish me prayers and luck!

Colleen

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Unrealistic Expectations

~ Colleen ~ Leave a comment

Apparently the doctor was correct and I had/have a brutal case case of bronchitis that brought on a nice flare in my optic nerve. So a shot and some oral steroids later and I am feeling much better ( I sound like a man and can taste pennies in my mouth) . But the important thing is the optic flare just left me with a case of blurred vision and not total vision loss.

I spend most of the past 2 days refreshing my email waiting to see if my Evaluation appointment in Chicago has been scheduled yet. I received an email Wednesday saying that all was in order and they would be contacting me to schedule. I know better then to assume that I am the only person they have waiting, but I can’t help but obsess over the email. I replied, obviously, and said that I was available as soon as they can get me in… Seriously..l I will get there if they can get me in. Please get me in. Ugh!

I know the odds I have of getting accepted to the trial. I know the odds I have of getting stem cell replacement if I do get accepted. I know what to expect if this happens (thanks to my now Leukemia free best friend – really Jen, there were other ways to help a sister out). I know my optimism is unrealistic. I know this is unlike me and my expect the worst attitude… I KNOW. I just can’t help it. I want this. I want to be cured (sorry, in remission)! No matter how unrealistic that is, it’s realistic to me!

Colleen

PS- just checked again, no email.

I Failed Web MD Medical School

~ Colleen ~ Leave a comment

So today I cancelled the short term disability I was on because of the Tecfidera side effects. I was feeling better and thought…. Let’s get back to work. It was really nice to be back. I have such an incredible support system there. I am very open about my MS and I know people have mixed feelings about that. For me, I knew it was right. Anyway, at about 3, I hit my wall and started coughing. It was like I drank lighter fluid with a sandpaper chaser. I went to urgent care… Already diagnosed by Dr. Me.

Dr. Colleen – Hi… I have the URI my daughter had last week, I’m just being cautious because I have a compromised immune system. I also have some chest pain, but I’m exhausted and it is the MS Hug.

Actual Doctor – You have Acute Bronchitis.

Guess he told me.

Colleen

Adoption Process Flashbacks…

~ Colleen ~ Leave a comment

It’s funny, the last time I blogged was when I was adopting my daughter. I feel the same sense of overwhelming anxiety waiting to hear about when I will go to Chicago for my stem cell trial evaluation that I did waiting for each step in the adoption process. It all consuming.

I never cried when I was diagnosed with Multiple Sclerosis. I never once doubted that I would beat it. However, with each failed medication, a tiny part of my self imposed wall has crumbled and the emotion I try so hard to keep out is breaking through. I think the past 16 months of fighting and feeling so sick has started to beat me down. I feel like half a person… half a mother, half a daughter, half a worker and half a friend. I want to be whole again. I try so hard to stay on these drugs no matter how sick they make me. I feel like a failure when I am taken off them. Every well meaning person that tells me of their friend who has had MS for years and is In remission makes me feel like even more of a failure and I know better. This disease is not cookie cutter. It is so different for each person yet I still ask myself, what’s wrong with me that I can’t get there? That is why I am so anxious to move to this next leg. I want to feel like I am making progress for my future… More importantly, for my daughters future. I have a chance of stopping this disease in its tracks. I don’t want to lose it.

The paperwork my father sent to Chicago will be there tomorrow. I am “carelessly” optimistic that I may hear something this week on an appointment. The first and most critical step is getting evaluated and God willing accepted to this stem cell trial with Dr. Burt. That is what I pray for.

My favorite saint, Padre Pio is known for his saying, Pray, Hope and Don’t worry… worry is useless. I need the strength to practice that line I love so much.

Colleen

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Up until now…

~ Colleen ~ Leave a comment

Where did it start…. Truly, I have no idea. I know that I have had my fair share of stress in my life so to pinpoint the exact time I had my first MS symptom is virtually impossible. I can start when I was diagnosed. Most people. You talk to tell you it takes years for Multiple Sclerosis diagnosis. For me, not so much. To me it was a shock.

In June 2013, I lost hearing in my right ear for some weeks. I was given steroids by an urgent care who attributed this to an inner ear infection of some kind. A week later, I went to my loved ENT who said although my hearing test showed a definite decrease in hearing, my ear looked fine. He sent me for an MRI. That MRI showed multiple lesions in line with demyelinating disease. He referred me to A Neurologist who specializes in MS. I expected months of testing or other diagnosis, but by the end of the appointment, I was diagnosed with RRMS. I began my first injectable drug Copaxone within 2 weeks.

Very shortly after beginning copaxone I had a flare of optic neuritis which caused severe pain in my left eye and the loss of nearly all my vision. I started IV steroid treatment for this. I continued the Copaxone and in September of 2013 had another episode of ON. I went on IV steroid treatment again and within 6 weeks had a 3rd. At this point, the doctor suggested that I begin IV infusions of IVIG with the copaxone for 6 months hoping that would keep things at bay. I continued this treatment until May of this year.

After my MRI in June, My doctor and I discussed the copaxone/IVIG and decided to switch to Betaseron. I was on that from May until September at which time my blood results came back with elevated liver and kidney function. I went off the medication and had blood test done 2 weeks later. This showed that they were back to normal and I began Tecfidera. This is a fairly new oral drug that my body, could not tolerate. An ER visit, some morphine and a few miserable weeks passed before that medication was no longer an option for me.

All was not lost, because at the doctors appointment in September. We discussed a trial that is occurring in Chicago. It is in its 3rd level and the results have been amazing. The doctor in charge of this study was also it’s pioneer. He has done thousands of stem cell transplants and the ones he has done for autoimmune disease have shown remarkable results. My neurologist gave me the doctors information and I sent in a letter asking to be considered. Friday, I received word that they would like to see me in person for an evaluation to see if I qualify for the study. My father quickly ran all over town gathering medical records and CDs of MRIs and we fexexed it to Chicago. I now wait for my appointment.

The first and most important hurdle is to qualify for the study. This is where the prayers are needed. If I qualify, I will go for further testing and then I will be randomly placed on one of two legs of the trial:

Stem Cell Replacement leg -this is what we want. It is hard. It will involve chemo and long hospital stays, but I want it. I want my life back.

Control Arm – this leg is still good. I will be sent home to my amazing neurologist who will monitor me on the medications available to me as part of the study. Every 6 months to a year I would go back to Chicago and get evaluated. If I progress, I am switched to the stem cell leg. So this is still a great option.

So here is my very edited MS history until today. We now wait to hear from Chicago to see when I can go. I pray to God it is soon and brings us the answers to our prayers.

Goodnight

Colleen – my MS insomnia is nearly passed and I will hopefully see sleep soon.