Plan is back on track.  Dad took me to Rush get additional mammogram screenings this afternoon.  The doctor showed me that there were some nodules she wanted a closer look at but that everything is clear and they were able to get the baseline pics they needed since it was my first mammogram.  She was able to give me the form I needed so that I could get that turned into Northwestern so they can request Cigna approval.  I’m planning for that next week…..let’s hope Cigna agrees.

On Monday dad took me to the neurologist as a follow up appointment from the steroid infusions.  The timing was good because I have been steadily declining.  I can’t remember the last time I drove- I only remember it was to meet a friend for dinner a couple blocks away.  I can’t go out alone now at all- I used to be able to uber.  I now have to have friends meet me here for dinner.  My friend Kim and her daughter have been sleeping over on the weekend which has been a huge help.  They are also going to take my dog Zoe the whole 6 months during and after transplant so that will be a huge help.

I started using a 4-prong cane but need a walker- my friend Kim will bring me her dad’s next time she comes out.  My fatigue is overwhelming, my balance is at an all time low- I’m holding on to stuff not with one hand but reaching out with my other hand now too.  I feel like a bobble head doll.  I’m taking extra antivert for the vertigo.  The steroids have my muscles feeling loosey goosey when normally they are tight and hurt.  Just taking a shower is kind of scary and I need a chair in there for now- thankfully I have a huge walk-in shower.  Yet, even with all this….I know that I’ll be okay, this is temporary and the transplant will help.  May isn’t that far away I can hold on.  I just can’t decline further.  So the neurologist didn’t like the decline, but he said that this can happen with steroids during the taper period.  He said we can wait a couple weeks and see if I start to improve since I’m down to 1/2 pill now.  I agreed.  He said that if I don’t improve we can either repeat the steroid infusions or he can give me athcar injections for my adrenal glands to make their own steroids as kind of a more natural option….however that comes with a hefty price of $50k so it’s not a first course of treatment option.

Yesterday was the best day I had in awhile….I got in a whole 2500 steps which is really pathetic but when it’s been hard to get 1000 steps in a day it’s something.  I was starting to feel a little hopeful that maybe this was starting to pass.  This morning I had a very scary shower.  I felt like I was going to pass out and I had to tell myself “get out of the shower.”  I was able to get out safely and collected myself but it was a wake-up call.  My dad suggested maybe my blood pressure was low.  It may have been I did take it later at his suggestion and it was okay by then.  My goal today was going to be 3000 steps and it looks like I will be meeting that goal after all since I did all the walking at Rush today.  Usually I make little trips to get steps in, like one trip to the garbage chute, then another trip to get the mail, the end of the day I take out recycling.

I’m really hoping that this steroid coma I’m in lifts soon because I am anxious to get down to the workout room and push and lift some weights before transplant.  And I’m tired of “moon face” but more than that my neck is just so tender.  Sigh.

So for now…..I’m spending my time researching gluten free recipes and cooking.  I’m even growing basil.  And I’m finally able to tackle paperwork and get organized and focus totally on me and that feels great.   Still feeling very grateful and breathing better than I have in forever.

Hopefully my next update will be with insurance approval.  🙂

I went and had the mammogram done on Wednesday at Cigna’s request.  Of course, my first mammogram, I would have an issue.

The mammogram itself wasn’t as terrible as I was expecting…..but my  mobility has really declined and I found myself using the cane and holding the wall and it was the walking that really got me.

My plan was that I would get the results back quickly with an all clear, get that to Cigna, and get my transplant approval next week with no more hoops to jump though.

Well, my boobs had other plans apparently.

Yesterday afternoon I got the form letter in mychart from Rush that my mammogram screening showed one or more findings that require further imaging.

So I immediately contacted my PCP (primary care physician’s) office and the receptionist said she’d have my doc put in the order for the rest of the scans.  Of course nothing happens on a Friday afternoon so I’ll follow up on Monday but that office is really good at being on top of things.  Hopefully I can get in ASAP and get the all clear.

I’m not even concerned or considering the idea of anything wrong with my breasts I am just anxious to get this crossed off the list so I can keep going on my transplant journey.

I’m still on the oral steroid taper and that will be done in a few days so I’m hoping for some relief after that.  I’ll see my neurologist on Tuesday for a follow up appointment so we’ll see what he suggests in the meantime.  I can handle functioning like this for a little while….May isn’t too far away…..but I have had to make some adjustments.  I need a bench in the shower and I’m trading up for a 4-prong cane.  Normally I would be afraid of this rapid decline but I honestly feel like I’m going to be okay.

Emotionally I am in a very good place.  I am grateful to the universe for putting me here and being accepted to the study and for the first time in my life I am 100% focusing on me and my health and not work or school or anything else.

I’m back to being gluten free which feels so much better.  I’m enjoying trying recipes and preparing my own food.

As crazy as this journey is it’s truly the best thing that ever could have happened to me.

Hoping for an all clear update on the mammogram next week!

Oh…..and also….thank you to my friends and family.  My family checks on me daily and I have not socialized this much in YEARS.  I am truly grateful to have amazing friends who have come to visit, driven me, taken me to dinner, stayed the night…..words of encouragement, all of it.  Feeling the love.  Thank you.  🙂

 

Cigna my insurance company in reviewing the transplant request has requested a couple of records- one of them a mammogram which I have never done (I turned 40 last year…..yes I should have done it then…..) so I have an appt scheduled for tomorrow.  The other gyne record I gave them so hopefully next week I will get approval.   Of course they can’t promise anything over the phone, it’s a clinical trial, medical director has to review, etc and my transplant case worker tells me it only takes medical director 24-48 hours to decide so I’m anticipating a yes.  I’ve come this far.

In the meantime these steroids are killing me.  I haven’t been on a DMD (disesase modifying drug) since October so my body wasn’t protected and was acting crazy.  I had three steroid infusions the week before last done in outpatient settings and I’m on the 2nd week of oral steroid taper.

The neurological symptoms are largely improved on steroids but my balance, mobility, vertigo, gait, fatigue, confusion, and all of that are just increased.  I can’t drive or walk much or do much of anything and that is very frustrating.  I’m eating clean making my own food with my delivered groceries and feeling good about that.  I would like to increase my physical activity but it’s very difficult.  I put on my fitbit yesterday for the first time since August and took a whopping 2500 steps which actually took some intention to do.  I’m going to try some chair exercises.

I’ve also applied for disability which is something I never thought I’d do.  I know it can take years to go through but hoping that my case will go smoothly.  I made a good contact at the local office who seems supportive.  I also have a disability policy I took out several years ago that’s only good for 6 months but that’s totally fine with me for now so hoping that will help.

So life in the meantime is about surviving your symptoms, trying to get your household affairs in order, being as healthy as you can, planning and being a full time patient.

 

 

 

I received my test results back this morning from Friday which surprised me!  I wasn’t expecting them for a week or so.  They looked good for the most part but there were a couple of things that were slightly off so I added those to my list of questions for the meeting today.

Dr. Burt is extremely quick…..he came in went over my history when I was on which DMDs (disease modifying drugs) Avonex, Aubagio…he thought I started tecfidera and I told him I had not and he asked why and I told him because Rush was trying to push me to use their pharmacy and I didn’t want to and it was some back and forth and he asked about my new doc and I told him I love Dr. K and he asked what he is doing for me in the meantime and I told him about the steroid infusions that I started because I’m declining and he asked what’s going on and I told him cognitive issues and my walking is worse, balance, vertigo, etc.  Then he watched me walk, he asked me to do the heel to toe and I told him only with a wall and he said he will be there and put out his arm and I did one step and he had to grab me and he’s like “okay this isn’t going to happen is it.”  I could do the toes thing and the heels thing okay but not the balance stuff.  Sigh.  He told me again about risks including death and I told him I understand.  He asked if I had questions and I told him a few and he said like what and I named a couple and he said Betsy could explain it.  He also talked about the charcoal drink for the Aubagio washout and said the nurses would explain more.

Then he left and I met with Betsy and she pulled in Kim to talk about the Aubagio removal/charcoal drink and since i was only on it for less than 2 months they suggested they do a lab to see what level it’s at so they know whether to have me take 4 or 8g of charcoal drink TID.  I forgot to ask how many ounces that is.  Ugh.  They will email me the labcorp requisition.

Then I met alone with Betsy again and she answered my questions.  Which were:

1. H0w do are my new cells not affected by MS?  She explained basically because they are baby cells and haven’t had a chance to acclimate with the old autoimmune cells that they are removing.  That’s what I thought but I didn’t know how to explain it better to those asking and I guess there really isn’t a better way to explain it- if someone has a better way please advise.
2. Do I anticipate early menopause?  She said yes but not necessarily.  Since I’m 41 I guess that makes it more likely.  I told her I went to an endocrinologist a year ago who said I was no where near menopause but that doesn’t matter apparently.  Great.
3. What are the most difficult times that I’ll need caregivers?  I explained to her I have different people with various degrees of experience and my BFF Michael and his husband will be coming and since they have healthcare experience I want to line them up for those toughest times.  She said she would “pull out the big guns” for first dose of chemo and mobilization and that time following with injections, etc.  That’s when I’m thinking I’ll have BFF Michael out.  After I’m discharged from the hospital she said I’ll be needing help too so I’ll try to have BFF’s husband come out and then my parents and whoever else I can line up.  🙂
4. Do I have to worry about flushing the Vascath or PICC lines?  She said no, that I will have them put in before admission each time and they will care for them there and remove before d/c so I dont have to worry about that.  The old handbook mentioned something about flushing but I don’t see that in the new one.
5. Do I need to worry about slightly abnormal labs?  She said for their purposes no but she did recommend for me to see endocrinologist (again) about T4 for hypothyroidism.

So next step is insurance approval then I’ll go back to meet with her again and go over everything.

Can’t wait for that approval!  I’m hoping for end of next week but most likely the following week.

Thank you everyone for your support!

 

 

I went to Northwestern for Pre-transplant testing.

My first appointment was with Dr. Zuskar the psychologist.  First- her office is NOT attached to the hospital.  Maybe that was obvious to others but it wasn’t to me.  I live in Chicago so maybe they assumed I would know this but I figured McClurg Court was a hospital wing like Galter Pavilion or Arkes Pavilion. So it took some for me to find it and the staff at the hospital didn’t seem to know where she was.  They looked me up in Epic (the software system) and didn’t see that appointment so I figured she isn’t associated with them and I will truly have to go back outside and ask the girl in my phone, Siri, for help.  When you get off on her floor, it’s apartments.  I wasn’t prepared for that.  The instructions said to go in and have a seat in the waiting room but I felt weird opening a private residential door so I knocked.  She answered and let me in and I saw there is in fact a waiting room there.  So for those of you who go there feel free to open the door.  🙂  She said that Dr. Burt believes in mind-body connection and she asked a few questions mainly about any fears, coping mechanism, support system, etc.  She gave me her card in case I should want to call her.

Next I went back to the hospital to do labs and EKG.  The phlebotomist took 11 vials of blood!  I don’t like to look so I turned my head but I asked her how many and she told me.  She told me she would also need urine and I was glad I had brought a bottle of water to drink with me because that wasn’t listed on the tests.  She also did the EKG and that was pretty easy.  I did the urine sample and was on my way.

I did the chest x-ray next which is fine….if you have a larger chest like me you have to really hug that machine so it gets close enough to your lungs.

The pulmonary function tests were okay.  I think I’ll be hearing the lady say “blow, blow, blow, blow, blow, blow, blow!!!! in my sleep tonite.  You’re in this little booth thing and she has you put your mouth on this tube thing and puts a clamp on your nose and tells you when to blow, how fast or slow and when to take a deep breath, etc.  At one point she closes the door to the booth and warns me that I won’t be able to take a deep breath in which made me a little nervous but it was fine.

Lastly, I did the 2D Echo.  That was fine too.  Was kind of cool to see my heart.  She said my heart is beautiful so that was reassuring.  The only part that was uncomfortable was the gel stuff gets wet and yucky and I toweled it off but I was glad it was my last test so I could come home to shower.  Oh and she pushed the wand against my ribs at one point a bit and that was a little uncomfortable but necessary.

The staff at northwestern are great.

Here are my take-aways…..

1. Don’t go alone, try to bring someone with you.  I wish I had someone with me I was tired and got turned around and it’s a long day and a lot of walking for us MS people.
2. If you drive…..which I rarely do these days but I did today….make a note of where you park your car in the garage.  Not just the floor you parked on but what entrance you came in and which row.  Look to see what your car is facing.  I thought I was fine knowing I parked on the Frank Sinatra floor but I didn’t realize there were multiple entrances to that floor.  I found myself walking too much before I realized I could use my keychain to make my car beep and finally found it.  It wasn’t far I was just out of it.
3. Bring a bottle of water to drink for the urine test.
4. Charge your phone before you get to there and take your charger inside with you just in case.  I had to go back to my car to charge my phone during the time I should have gotten something to eat for lunch so I didn’t have a chance to grab anything until after 2pm.

 

I got THE call from Northwestern today.  Betsy the study nurse called and wanted to go over my testing schedule for Friday.  She also suggested that I bring any questions to Dr. Burt for our appointment on Wednesday because it may be my last chance before the transplant.

I asked her about next steps and she said that it will take about 2 weeks for my test results to come back and they need to submit to insurance and it can take up to 2 weeks for insurance approval.  She also said I will need to do the washout for the Aubagio and I asked her if that’s inpatient or just by mouth and she said I will have to drink stuff for 11 days and then they will do labs to make sure it’s out of my system….but I may have to do it again.  I asked her why and she said some people have problems tolerating the washout drink but I told her I will do it the first time and plug my nose and do whatever I have to do to get that stuff down.  She said after that they will schedule my chemo and mobilization and it’s looking like May because Dr. Burt is out of the country on vacation for the month of April and he can’t have anyone in process at that point.

I am truly grateful.  🙂

I got a call from Mayra this morning asking about my availability for the next couple of weeks.  I told her about my dentist appointment on Monday…one of the requirements is the dentist blessing and a cleaning….and she said she’d coordinate around that.  I figured I’d hear back next week.  It’s a lot to coordinate but I heard back from her within hours!

Next Friday I meet with the psychologist, then get the EKG, Chest X-Rays, labs drawn, pulmonary function test, and an echocardiogram.

Then the following Wednesday I go back to meet with Dr. Burt.

Starting to feel real.  🙂

 

I received great news this week- Cigna approved the first phase of the stem-cell transplant which is pre-transplant testing.  Apparently they approve each phase.  Pre-testing, pre transplant procedures, transplant, then post-transplant care.

Then today I received the email below from Northwestern:

Hi Ellie,

I just heard from our financial liaison that you have been approved by Cigna for a pre-transplant workup, which means we can schedule you for pre-transplant testing. That includes an echocardiogram, EKG, chest x-ray, labs, psychosocial eval and PFTs (breathing tests). We will then submit the results to your insurance company and they will respond based on the pre-transplant testing with an approval or denial.

I’m attaching a dental evaluation form. You will need to have a dental checkup/cleaning and please have your dentist fill out the clearance form.

You should be hearing from Mayra or Kim Bracy in the next week or two to start scheduling your pre-transplant testing.

Once we have a decision from you insurance, we will plan the Aubagio washout.

Thank you,

Betsy

She doesn’t mention here about the study neurologist or when randomization occurs so I’m still keeping everything crossed.  One hurdle at a time.

At the suggestion of my friends on the HSCT Facebook page I met a new neurologist today…..Dr. K.  He was GREAT.

He told me the treatment I choose is MY decision….that was so refreshing.  He also looked over my MRI disks with me on the computer and showed me several additional lesions that the radiologist didn’t report.  He said “if it feels like your MS is active it’s because it is.”  Well duh I’ve been trying to tell Dr. S. this.  So nice to be validated.

He also noted that my hands are weak as are my legs.  I didn’t think about my hands as weak but I have noticed difficulty in opening things and not dropping things.  My legs I knew became weaker and he pointed out that my left leg swings out when I walk.  I hadn’t noticed that but I told him P/T did tell me my left leg was weaker.

Dr. K said he would inform Dr. Burt that I am under his care and that he supports my participation in the study and to email the nurses at Northwestern.  So that’s exactly what I did tonite.

The story continues.  🙂

This week has been awful.

Sunday I cut off a part of my thumb while using a mandolin cutting potatoes- and apparently, myself too.  Thankfully it will grow back but it’s pretty traumatic and gross.

Monday I called Northwestern to follow up on my appointment with Dr. Balabanov.  Kim said she was just asking Dr. Burt about me and that he had said he was going to talk to my neuro, Stefoski.  I told her I had a feeling he already had as I was getting a weird vibe from his nurse.

Dr. Burt called me to inform me that Dr. Stefoski is a very good doctor but tends to be conservative and will not agree with the study and he will not come between me and my doctor so he has to put me on hold.  I was devastated.  I asked him if I convince Stefoski can I come back then and he said he can’t be involved and I told him I understand.  Of course, just my luck, that out of the 3 neurologists in that practice at Rush mine is the one who won’t agree with HSCT.  I called Rush and for a call directly with Stefoski to call me back.

I immediately went to the HSCT Facebook pages and posted an SOS that I was in need of a neurologist in Chicago who is not affiliated with Rush or Northwestern.  I got several responses that Dr. Katsamakis is the one.  I left a message for his new patient registration people at his practice.  I also called another neurologist affiliated with UIC who my aunt connected me with and got an appointment with him for March.  I figured all specialists are going to have long waiting lists so I’m going to just have to convince Stefoski.

Tuesday, yesterday, I brought my MRI disk to Stefoski’s office and gave it to the receptionist to give to him.  I told her I hadn’t heard back from Stefoski and that I needed to talk to him for just a few minutes and needed an appointment or at least a phone one.  She said he was busy and would have him call me.  I then asked her if I could talk to his nurse and she said she may be with a patient and I told her I could wait.  I had a seat in the waiting room which was pretty full.  I overheard a couple behind me talking about Dr. Burt’s study so I turned around and told them I apologized for interrupting but I overheard them talking about the study and they told me it was for their daughter.  I asked if she sees one of the neurologists there and they said no.  I explained I was there because of the study and my doctor refusing to agree for me to participate and their daughter said “oh you’re the one from the facebook page I gave you my doctor’s info!”  I went and sat next to her and we started talking and I was very happy to hear she was there for her evaluation with the consulting neurologist, and my neurologist’s partner, Dr Balabanov.  Then my doctor’s nurse Haley came out and got me so I said goodbye to Courtney and explained to Haley we all know each other from the study facebook page.  I told her I brought the CD of the MRIs so Stefoski could measure them and decide how to treat the lesions but really I also wanted to beg him to reconsider.  She said she could try to talk to him but his mind was made up.  I reminded her that when we talked initially and I asked her about how he would feel about it that she said “I’m sure he’ll be fine with it since his partner is involved.”  She said she knows but he thinks tecfidera is more effective for me at this point.  I asked her if he has agreed for other patients for HSCT and she said no that he doesn’t agree with it now but used to in the beginning.  So I don’t know what happened but it sounded like I really didn’t have a chance with Stefoski.  I again voiced my concerns about tec with the JC+ virus and again she said I was confused that it’s Tyfabri and again I told her I looked it up and it is both.  She said she’s have him call me.

I received a call yesterday from Stefoski that he understands I’m upset.  I told him I really want him to support my decision for the HSCT study and he said “I will not agree to drop a nuclear bomb on your MS.”  Well that is exactly what I want…..a fucking nuclear bomb dropped on my MS!  That’s the point!  He said tecfidera should be fine for me and that the study doesn’t want people like me, they want them worse off, and I told him that is untrue I meet criteria they specifically want people like me.  I asked him if he agreed to the study for anyone else and he said that he has and that he was involved in the study.  Honestly, I believe his nurse.  Maybe he was interested in the beginning but clearly he is not now and yes he has 40 years of treating MS and he seems happy to do it conservatively.  I told him respectfully it’s been over 12 years with him but i am going to get a second opinion.  He did agree that if I’m staying in his practice that he will allow he to try Gilenya instead of tec.  I agreed to try that.

I was still devastated….but….then I got a call from Dr. Katsamakis’ office with registration and got an appointment for January 4th!  That’s less than a month away.  I can wait.  Doing my best to keep the faith that everything happens the way it’s supposed to for a reason.  I feel good about my chances with him.

Meanwhile, I’ll have my thorasic spine MRI tomorrow and get my blood work released to me so I’ll be walking in with lots of info for my appointment next month.

Fingers crossed!