Month 2 post HSCT (Day +63)

I can’t believe how fast the time has gone.

The good news is my MS symptoms just keep improving….the left side of my face and inside mouth was numb from a lesion on the transgeminal nerve and that has mostly cleared up…..a tiny part of my lip and tongue are still a little numb. My labs continue to improve and are in the normal and low-normal range and I had them drawn again today so I’ll be interested to see how they are.  I’m still forgetful and a little dizzy but I’m hoping that improves when my cold clears up.  I’m also having trouble concentrating and focusing and I’m taking 2 classes online toward my master’s degree so I kind of pick it up and put it down all day long while doing other things or resting.

My struggle in July and August has been catching colds and not being able to overcome them with my immune system of a newborn.  So I’ve been uncomfortable with sore throat, coughing, congestion, no voice, now hoarse voice, fatigue, all of it.  I did a zpack last week and it did help some but the cold is still here and uncomfortable.  I think I should have waited longer to go swimming after my “first cold” occurred….I think I got water in my ear and it’s done something to get the cold going again.  I’ll ask my transplant nurse this week what to do.

In the grand scheme of things….I’d much rather deal with rebuilding my immune system with a few colds than have an overactive immune system.

I received the medical alert bracelet I ordered today at the suggestion of my stem cell sister Daniela from  They have a lot of styles that don’t look too obvious.

medical alert bracelet

My eyelashes and eyebrows are starting to grow back and the hair on my head and body has too but not much on my legs yet which is fine with me!  I ordered false eyelashes and an eyebrow kit with stencils after seeing pics of my stemmie sister Daniela and the others in the group.  I’m not very good at it at all and I’ll need some practice but I had some fun playing with them tonite and added a wig I found at a local shop.  So here are my pics without hair and with hair:

ellie no hairellie brown wig and eyelashes

I’ve been too tired to hang out much on the HSCT facebook pages lately but I hope to catch up soon and see how everyone else is doing!

Thanks everyone for your support!


1 1/2 months post transplant

Today is day +44!

I returned to physical therapy yesterday after a 2 month hiatus and the staff were amazed to see me walking without a walker or assistive device and one of the therapists said I had “pep in my step!”  I was interested to learn what my assessment would show in comparison to my last one.  My BERG score, which is a balance scale to determine fall risk, was 55 which is barely a fall risk! 41-56 is considered low fall risk.  I was in the low to mid 40s when I was evaluated before I forget the exact number.  What was also interesting is that when I started P/T in April my left leg was weaker but now it’s actually stronger!   I was able to balance on my left leg for 12 seconds and my right leg for 7 seconds both of which I could not have done for more than a second before this transplant!  Originally when I was first diagnosed in 2003 my right leg was weaker.  It’s interesting because Dr. Burt’s nurse said the more recent stuff should clear up and it appears it has!

The vertigo is still an issue and I still have some cognitive issues but they are improving- I’m not repeating myself as often my nurse friend says.  I’m also pretty tired and find myself taking naps in the afternoon.  I also still have spasticity with spasms in my left leg but they are lessening.  The chemo side effects are there…my skin is very dry and itchy on my face.  I’ve lost more eyelashes and my eyebrows have thinned more and look like they’re getting ready to jump off but I’m okay with that.  The hair on my head has started growing in a bit. None of the cosmetic stuff matters to me anymore.  I’m just grateful to be getting better!

My labs are good and all in the normal range which means I’m allowed to swim!  We have a pool here at my condo association so it’s considered private not public so it’s less risky.  I’ve also been walking more!  Last weekend I took an uber to Walgreens to pick up Rx and walked around the shops and walked home.  I was tired but it felt good.

I have 2 more courses I just started toward my MHA and I’ve been spending some time working with the National MS Society to get them on board with HSCT.  Tim Coetzee is the Chief Advocacy and Research Officer and he sounds like he’s getting on board.  I was happy to see him participate in a webinar which I also dialed into at the last quarter.  I look like a mess in my PJs last month but I figure it’s worth sharing because it does provide some good information.  It’s amazing when I check out the analytics of this blog people from over a dozen countries are reading it!


Next steps….I’m now on biweekly labs and starting another medication, an antibiotic bactrim, tomorrow that’s 3x a week. I’ll call to schedule my 6 month follow-up appointment in a couple months.  I’ll keep going with P/T as many sessions as my insurance will approve and work on getting stronger!

Thanks everyone for the love and support it means a lot to my family too that their friends have followed this journey!


One month since transplant! Day +30


Time is flying.  I can’t believe it’s been a month since I received my new stem-cells and immune system!  I’ve been home 3 weeks now.

Here are the changes so far:

  1. I’m walking without a walker or cane or holding on to anything- I can even walk down the stairs of my building without holding the handrail (there are only a few stairs but still!)
  2. No nausea.  I stopped taking my nausea pill, valium, that I was taking everyday to try to prevent throwing up.
  3. No bladder problems.  I stopped taking detrol that was for frequency/urgency.
  4. Very few muscle spasms.  They’ve been decreasing steadily decreasing and now I only have them occasionally in my thigh. Much better than the constant spasms!
  5. My balance is improving I can stand up and get dressed instead of having to sit on the bed to put on underwear, shorts, etc.

Last week I went to the follow-up visit with my neurologist.  He suggested that I check out medical cannabis to replace most if not all of my medication.  I’ve never even tried a cigarette so I won’t be smoking anything but I can take it in gummy bear form!  I like the idea of getting these chemicals out of my body for something natural so I’ll apply for the card.

I’ve been struggling with a cold that I’ve had for a week and a half and it’s a little hard to get rid of it with a low immune system but I think I’m nearing the end.  I’ve been so careful I’m not sure how I got it.  I wear gloves when I go downstairs to the mailroom and to Northwestern for blood draws and I wear a mask in the elevator if it’s crowded, etc.

I’m still pretty tired but feeling better everyday.  I had my blood drawn again yesterday due to Monday’s holiday and am waiting for those results but my transplant nurse told me last week that I’m on track.  I’m allowed to “go out” but with my low energy I’m pretty content to stay around here.  I can’t drive anyway and I have to stay away from crowds because they have germs.  Plus I’m really behind on school work from being in the hospital so I’m playing major catch up. On the 4th my son (Drew), nephew, sister and mom came over and we had a nice lunch outside on the patio and mom and Drew  made hotdogs and hamburgers on griddle outside since I don’t have a grill (I’m a veggie).  Earlier my nephew and sister swam in the pool and after everybody went home in the evening I sat outside on the patio to watch the fireworks.

july 4 firework

I’m grateful to have friends and family who come to visit. I had several visitors this past week.  Marsha and Alissa came to visit and brought me a couple of additions to my inspiration tray on my coffee table.  They brought me a hamsa (I love hamsas!) and another stone that says TRUST.  I absolutely trust the HSCT process. They also brought me matzoh ball soup and watermelon.  Alissa told me about Dr. Burt’s study in 2003 or 2004 after she interviewed him for JAMA.  I’m forever grateful she told me about it.

inspiration tray update

Everyone going thru this wants to know….”when do you lose your hair, eyebrows, etc?”  I still have my eyebrows and lashes but have been told by a vet she didn’t lose hers until she was home a month so we’ll see if I still have them in the next week or two.  My son took this selfie of us on Monday.

el and drew

Thanks everyone from the love and support!


Week 2 Home (Day +18 to +25)

I can’t believe it’s been 2 weeks since I was discharged from Northwestern!

ellie with hat

Week 2 has been about dealing with pain and keeping my temperature down, regaining a little energy, and staying germ free.

When our temps go above 100.4 it’s time to call the transplant nurse to see if an ER visit is necessary.

Earlier this week it was constantly fluctuating while the past couple nights it hasn’t elevated much progressively later in the evening.

The pain felt like bone pain early in the week but has wore off.  But my right arm from the PICC line hurt all the way up my arm pit, neck and shoulder.  My transplant nurse explained that since the PICC was in the vein for so long it will take time to go back to normal.  It still hurts a little putting on deoderant but it’s almost back to normal now!

I’ve a got a small mouth sore which is a chemo side effect….the ones on my tongue from last week cleared up with the Rx and I’m using Biotene mouthwash as a preventative measure.  For those of you still in the hospital reading this, take the mouthwash home with you an the little cups too.

I haven’t much appetite since the beginning of the month.  I supplement with protein drinks.  I’m okay with that though as this past year I gained quite a bit of weight with all of the steroids both pills and infusions.  Nice to see it coming off finally.

The worst symptom is really fatigue…..but honestly all of these side effects are better than living with MS everyday.  The disease is on it’s way out of my body and it knows it and it’s fighting.

My blood tests this week were good, my hemoglobin is still low, some other stuff too but my transplant nurse said I’m where I should be and my numbers will climb back up to where they are supposed to be.

Today dad took me to see my neurologist for a check up and so I could get my Rx for Ritalin because I’m sooooo tired and he won’t mail it.  Ritalin requires a hard copy script so it’s not like he can call it in, etc.  He suggested I check out the medical cannabis card as it may be able to replace most if not all of my medications.  I love the idea of not having to take any more chemicals than I need to so I will look into it.  But I’ve never been a smoker so I’ll be taking it in gummy bears or something.  🙂

I also did my own manicure for the first time in a long time!  I did some research online for chemo safe products and found Zoya which is a nice line.  I also ordered a foot spa from and some sterilizing tablets for it so next I’ll try giving myself a pedicure!

Also, as a reminder to those of you going through this process, you need to throw out your makeup and get new stuff.  Can’t take a chance of microbes making you sick.  Plus if you saw the episode when Tyra Banks had her talkshow looking at old makeup under the microscope it’s just gross!  The other thing I did this week was take my makeup tools and sterilize them by giving them a bath in alcohol…tweezers, eyelash curlers, toenail clippers, etc.

My focus now is to wrap up the 2 online courses I’m taking as I’m running out of time!  i only have a week and a half to complete them.

Thanks everyone for the emails, facebook love, calls and visits!


Week 1 Home (Day +11 thru Day+16)

Today is one week since I’ve been home from Northwestern!

ID bracelet

It’s good to be home but I’m definitely tired, which, I was warned I would be for a good month or two.  I started taking naps for the first time in my life this week!  The last two nights I seem to be back to a somewhat regular schedule.  I’ve been very good with energy conservation- doing small loads of laundry and dishes, balancing time standing and sitting, etc.


It’s an adjustment being home, the first few mornings I woke up looking to see if I was connected to the IV pole before getting up to go to the bathroom….it wasn’t until a few days ago that I started waking up realizing I’m in my own bed.

I’m enjoying relaxing, having short visits here with friends and family.  My good friend Beth brought me these orange roses, (the MS color!) and a treat!

roses from beth


Physically I’m walking independently, haven’t used the walker or cane since before mobilization last month.  My gait is improving, and I don’t have nausea anymore.  Day +11 I had a zap in my foot, an “MS hug” and left knee spasm.  Day +12 my left thigh was having a lot of spasms but the second dose of baclofen helped, Day +13 my left big toe zapped, light spasticity in thighs, and maybe once or twice a day I see a circle of light with half of it flashing.  I know to expect some of my symptoms to linger for awhile but they are much better than they were. Bladder issues are still resolved and have been since before mobilization but while I was in the hospital I was using products to prevent an accident because I was peeing so much!  My skin was very sensitive to the touch until the last day or so and I’m starting to have minor spasticity return.  Also in the hospital through the first part of this week I couldn’t feel my calves which made walking weird.  I could feel my thighs and feet but not my calves.  Today my legs feel more normal but still a little weird.  I’m careful in the shower using my stick-on grab bar on the glass shower door to hold on to as I open the door.  I don’t have much appetite so I’m drinking Premier Protein drinks to replace one to two meals a day. My right arm hurts at the PICC site and the right side of my upper body does too from my neck through armpit.  Putting on deodorant is actually a little painful.  A few days ago I noticed I have a couple of sores on the side of my tongue- it made brushing my teeth painful, especially when trying to spit.  I looked it up and it’s a side effect of chemo.  So talking and eating and drinking have been painful but I started using the biotene my parents brought me in the hospital and it helped, but the Rx Dr. Burt’s NP Michelle called in is even better as it has lidocaine in it so it numbs my mouth. I feel another sore now inside my lip on the right side of my mouth but I’m hopeful they will heal soon.  I’m also still having some bone pain but it’s minor and intermittent and I can just take tylenol if it bothers me.  I think of it as my stem cells unpacking and getting settled!

On Monday, Day +14, in the morning I went to see my stem-cell sister Daniela get her stem cells back!  It was really cool to watch her have this done in my old room!  1676.  6 is my lucky number and my transplant was on 6/6/16 in room 1676.  I never really believed in luck before but I’m feeling pretty lucky now and am so glad she has my room as I believe it has good energy in it!  She has been a huge support to me since I met her at our evaluations in November.  I got to meet her kids and mother-in-law and see her husband again. I got my labs done and he drove me home.  I told them next time they go to visit her to bring their swimsuits and they can swim here in our condo association’s pool.  While I was waiting for her family to meet me to take me home I stopped in the gift shop and picked up one more item for my “inspirational tray” on my coffee table.  It’s a pebble that says “success” because I believe my HSCT will prove to be a success!

success stone

My lab results came back quickly on mychart and almost everything was in range, my hemoglobin and hematocrit were a little low but Michelle the NP called to review the results and said that’s normal and my numbers are climbing back up and I’m on track!

Today I wandered down to the fitness room and walked on the treadmill for half an hour at 2.2 MPH just to get some steps in….and then used the leg press which felt good.  Since my right arm is sore I decided to wait on the arm machines.  I can see Rush Hospital from the leg press machine where I was last June for that big MS attack that changed everything.


I’ve been spending my time outside when the weather cooperates on my patio.  I have a bag my friend Marilyn made me that I call my “patio bag” where I bring my music speaker, ipad, magazines, suntan lotion, chapstick, etc. outside and then back inside with me.  Very peaceful place to heal.

patio daytime

Thank you everyone for your continued support!


Day +6 thru Discharge (Day +9) and Day +10!

day 7

I took the pic above when I was finally feeling better evening of Day +7 !

Day +5 was the best day yet so I was not expecting to have my worst day on Day +6 and then even worse on Day +7!  But that’s the rollercoaster that is HSCT.  I was expecting the possibility of needing more platelets because my level that morning was at 31 and they transfuse below 20.

Day +6 sure enough my 2am blood draw comes back with platelets at 14 .  Time for a transfusion.  In the morning I saw blood in my urine that was more “dramatic” than we women would anticipate as routine so I alerted the nurse.  Dr. Burt happened to walk in for rounds as he was receiving a page from the nure with the info and read called her to the room and he told us both that 95% of the time it is just normal cycle and I told him I was a few days late so that was fine.  But it’s a little alarming so ladies who are going through this be forewarned.

I was so exhausted all day.  In the morning I had to sit in the chair next to the dresser to look through my clothes and dress and had to be very careful walking to the bathroom, holding furniture, using the toilet rails, etc.  I hadn’t felt so weak in my life.  The next blood draw results came back in the evening with platelets down to 12 which didn’t surprise me based on my inability to move from my chair.  So another transfusion.  But then I went to sleep feeling very peaceful and had the best night’s sleep yet.


Day +7

I woke up early at 4:30am before the PCT came in!  Normally they wake me up around 5am. I felt so positive and rested and grateful.

My platelets from the morning blood draw (2am) came back up to 37 but my hemoglobin dropped to 8 and they transfuse below 8.5. so I was expecting and actually hoping for some blood- last time I got it I think it was day +1 I felt immediate relief and I was feeling weak.

Around 9am Dr. Burt and team (all his NPs and PAs) rounded and Michelle, my amazing NP (nurse practitioner), said my hemoglobin was a little low and I asked her, “so does that mean I can have blood???” she said “well, yeah since you asked so nicely, I’m not really used to that reaction!”  She said they were going to give me 2 units of blood.  I was also orthostatic meaning my blood pressure was dropping quickly upon change of body position (lay/sit/stand) so Dr. Burt said “I don’t want you getting up without anyone next to you.”  I wouldn’t have felt safe doing that anyway.  So, I watched the clock to schedule my hourly bathroom escorts, allowing for a 15 minute wait because they’re busy on the unit.  Hourly may sound like a lot but at this point with all the fluids and stuff (transfusions require pre-meds in the IV in addition to the routine stuff we get) it was necessary and my body was really starting to get a lot of fluids off which was great but not fun when you can’t go to the bathroom by yourself because you feel like you could fall over and almost pass out.  The bed is only a few feet to the bathroom which is great but you still need help while you’re orthostatic especially when you’re connected to “the pole.”  15 years of running assisted living facilities and occasionally helping other people to the bathroom so this was a first for me to be on the other end with bathroom escorts but at least I was comfortable with it.

The 2nd bag of blood finished around 2:50pm (my texts to my nurse friend Marilyn really helped create a timeline!) but I didn’t really feel the immediate relief that I did the first time but I was feeling improvement.  But 3:51pm I sent my friend Marilyn a text “I just went potty like a big girl.”  Phew back to being able to function.

Dad came to visit around 4pm and brought my shopping list (cheezits, jelly bellies and lemonade) which are all 3 things I rarely buy in real life….but when you go through this process it’s also not like real life and your stomach isn’t the same and the everything affects you differently.  I didn’t have much of an appetite so I was only eating breakfast type food twice a day and one of my protein drinks (premier protein is great….30 grams protein, only one sugar) and sucking on cheezeits tasted good to me and kept my stomach from getting yucky.  Sucking on a jelly belly jelly bean really helped with the metal mouth taste from the IV and lemonade also really helped to get another taste in my mouth because water just starts tasting like metal.  Normally I only drink water so it was weird to want anything else.

Michelle, NP came and rounded before leaving (Dr. Burt’s assigned transplant nurse or one of the others always round before going home for the day and check in with us).  She spent a lot of time talking with dad and me and we really enjoy her- she’s incredibly sharp and professional and just plain cool.  She’s a rockstar- even Dr. Burt, the rockstar doctor, said so.  I told her I want to be home on my patio this weekend and she said that’s pretty likely actually as I may even be discharged before then as she thinks it’s only a few more days depending on the numbers of course.  By the evening I felt really good which is when I took that picture.

Of course the rollercoaster started up again that night after I got in bed with a little bit with bone pain which comes from the neupogen injections that started on day +4….so it was the night of the 3rd neupogen injection and when I was at home after mobilization with my friend Robert (Michael’s husband)  who was kind enough to stay with me that week, I started having bone pain on the night of the 3rd neupogen injection and I took a tylenol because I wasn’t wanting to start on norco but the next day I had major bone pain like labor pain so I wished I had taken a norco the previous evening to have a build up of norco in my system….so I wasn’t going to make that mistake again.  As soon as I started feeling the bone pain I took a norco before going to bed.  I hate norco though it makes me really high and I do NOT like that feeling.  Bone pain is also a weird feeling, to me it felt like my new stem cells were trying to unpack and move in….which is basically what engraftment is….so I’d feel a little discomfort in my hip, then it would jump to my forearm, different bones, etc.  Really strange feeling.


Day +8

In the morning I woke up not feeling too much bone pain more of an ache so I took a tylenol instead of the norco and I was fine.  Phew.

My labs came back great!  I told Michelle I have this fantasy that I leave tomorrow when my stem-cell-sis Daniela is admitted and I pass the torch to her….she said that is a very real possibility and we will see how the day goes.

Michelle came by later and brought me my discharge paperwork and I asked her my discharge questions:

  1. Swimming- the handbook talks about not using community pool for 3 months but my condo pool is private to the association, so how long?  She said maybe a month depending on my labs which will be done weekly so we will see.
  2. Mani/pedis- at least a month depending on labs and even then bring my own kit to the nail salon for awhile
  3. Massages- no wait.  I told her that I had asked Massage Envy about it and they said I would need a doctor’s note and she said that they are hygienic there is no reason for that.  I probably won’t feel up to going for one anyway for another week but I’m hoping they don’t see my bald head and stop me from getting one.

I texted dad “get the housekeeper scheduled I’m coming home tomorrow!”

What’s important to say here is that for anyone going through this- don’t compare yourself to me or anyone else.  I live less than 4 miles from Northwestern in Chicago and will be coming back weekly for blood draws so I’m sure they are way more comfortable with me leaving at day +9 than others who have to travel home.

An organization, Phil’s Friends, came by to visit and brought a bag of goodies.  It’s an organization founded in 2006 by two-time cancer survivor Phil Zielke and they reach out to people with cancer with packages and cards and have events.  If you know anyone who can benefit from their services you can even anonymously notify them and they will bring a “GIFT OF HOPE.”

I told them I don’t have cancer and felt kind of bad taking anything from them but they were so sweet.  They offered me a bible and I told them I’m Jewish and they said “well we don’t have any Jewish bibles I’m sorry” and I said that’s okay 🙂  but they offered to still pray for me so I said of course I’ll take any prayers….so they were sweet to do a non-denominational prayer for me which I appreciated.  Inside the bag are a water bottle, tissues, chap-stick, pen, notebook, card, Cuddl Duds socks, a knitted hat, Greg Ferguson CD, toothbrush, toothpaste, lotion, biotene mouth wash, crossword puzzle boo and a light ikea blanket. Perfect actually for homeless so I’m going to put it in the car and give it to someone who can benefit next time I drive!

phils friends

Day +9- DISCHARGE!!!

In the morning Dr. Burt and Michelle came early before 8:30am so I hadn’t had a chance to put on make-up for my Dr. Burt pic!  Or shoes as Daniela pointed out but I hate shoes!  Dr. Burt looked at my labs and said “yeah she can go!”  So I told dad I’m good to go!  I had already packed for the most part so I finished that up and had breakfast and waited for Daniela to be admitted.

michelle and dr burt pic

I definitely had “chemo brain” I couldn’t focus I was talking a mile a minute and making myself tired.  I’ve already warned my friends and family that I need time before phone calls.  I could also feel that I was still slightly orthostatic.

Daniela was admitted around 8:40am….next door!  But she got the “room without a view” with a tiny window.  That room is the last one they use because of that reason…so they move people right away when a new room comes open but they had a lot of admissions.  I went running around in the hallway trying to get someone to give her my room and they said of course it doesn’t happen that fast, I have to be discharged, they have to disinfect my room, etc but they would move her when she could to my room or one on the other side that was coming open.  I was running back and forth from my room to hers and brought her the unopened box of cheez-its, lemonades, and new york seltzer dad brought me since I was going home!  New York seltzer tastes a lot like Clearly Canadian both of which were great drinks we both liked that were taken off market years ago so she was really happy to have it!  Figures we would both like those.  🙂

So when I went back to her room to visit Tiffani was there visiting!  There is a facebook page for those of us going through this and it’s been a great support.  I had met Tiffani with some others for lunch a few weeks ago but it was before her pre-chemo hair cut…love the purple!  The pic below is of Daniela, Tiffani and me.  Wow I was tired that day but at the time I was so elated I was going home.  I also had so much fun talking and laughing with them.  As we shared our stories I kept thinking to myself…”I can’t believe people have to live like this….” and now thanks to HSCT- they don’t have to.

We are getting our lives back.  Amazing.  Then, I got kicked out by the nurse because patients aren’t allowed in each other’s rooms.  I technically was still a patient until my PICC line was removed and that discharge button on the computer got pushed.  Oh well.  I get it, liability, etc.

stem cell girls daniela and tiffani and me

So after getting kicked out I went back to my room and was working on my blog when someone from Gilda’s Club came by with a calendar of events in the hospital.  I told her I don’t have cancer (even though we’re on oncology floor) and she said “that’s okay we don’t discriminate!”  The calendar has  all kinds of things on it like crafts, yoga, etc.

I was lucky to be included in the “Look Good Feel Better” program which is also designed for cancer patients so I was surprised HSCT patients were included- I went to a free make-up class which I posted about earlier and also received a free wig.  I was appreciative but felt a little weird with everyone else having cancer and receiving a lot of chemo and hospitalizations while we as HSCT patients really don’t have to suffer as much with that process.  Yes, we are all fighting for our lives but to me it’s just different.  They actually discontinued the “Look Good Feel Better” program last week for us and really I’m okay with that.  We probably shouldn’t have been included to begin with but it was nice of them to do it.

The website for the “Look Good Feel Better” program for those with cancer is

leslie wig

My “Leslie wig” above which I haven’t worn yet I have to play with it a little.  I’m fine being bald or wearing a chemo cap or hat.  When I start interviewing for work I’ll wear it then or even get a new one.

So dad came around 1:30pm so while he was putting my suitcases in the car, the nurses removed the picc line. (Daniela and Tiffani the bed was up and tilted back with my head back and feet up again!!!!! )

Last pic of my board…Day +9….Thank you everyone at Northwestern!  The staff are very good there not just the nurses and PCTs but environmental services and dining services.  For those of you going through this please remember to point out the shining stars to their supervisors.  I had the opportunity to do that for the environmental services woman who my mom and sister and I enjoyed.  For her to hear me saying great things about her, all true, to her supervisor meant a lot.  From my experience in running facilites I really enjoyed when someone would take the time to compliment one of our employees….it’s tough work no matter what department you’re in and these staff are amazing.  I would ask them “how long have you been here?”  Northwestern is doing something right- most people were there for several years, the longest I met was there 18 years!

going home board

So dad came and collected me and now that I was discharged I could go to Daniela’s room and introduce her to my dad.  We’re going to have a joint stem-cell birthday party with our families next year and my family and friends have heard me talk about her a lot. More on her in a minute.  🙂

Dad and I walked toward the garage for him to drop off the rest of my stuff in the car on the way to Walgreens to pick up my meds.  Walking from Prentice  to the garage was really a lot on me.  I hadn’t walked for a long duration like that in some time.  We walk laps in the hallway but I didn’t build myself up to doing enough of them and I regret that now.  It’s just very hot and uncomfortable when you have to wear a gown, gloves, and facemask. Plus I spent so much time getting transfusions and IV stuff I was just plain tired.  Anyway I stopped to rest but it was extremely fatiguing.  It was very hot and humid yesterday in the low 90s and after being indoors over 2 weeks it really affected me too.  I almost passed out in the garage which was incredibly scary…but I remembered something that Michelle, the NP told me in passing about an O/T maneuver for orthostatic and I’m posting it here because it’s so important that everyone know what to do if feeling light headed because it really saved me.  Basically you clasp your hands and pull them apart like the pic below.  It’s a simple thing but so effective.


So dad took me home and I was pretty exhausted.  I had posted on my facebook page to please not call or send texts for a little while to give me a chance to recover.  My dad played gatekeeper during this process and I highly suggest everyone else do the same and appoint a point person who can share information….the level of fatigue is like nothing you’ve experienced at different points and it takes a lot on the body.  The phone is not something you want to deal with when you don’t feel well.  And talking on the phone is physically exhausting.

I came home to this beautiful orange lily on my patio!  Which is perfect because orange is the MS awareness color!

orange lily

After it cooled off dad and I sat outside for awhile last night.  It was beautiful outside and felt so good to sit outside with my flowers under the sky and fresh air.   I originally was insistent that I would be okay at home alone but after all that walking I was a mess so I caved and let dad stay.  I really had no business being alone that first night.  I went to sleep in my own bed around 10:30pm.  By the way….if you are a family member reading this of someone going through HSCT and you can afford to….the best gift is to get someone a sleep number bed or another bed that has the reclining head/feet.  Best gift ever from dad.

Day +10

I woke up at 5:30am and looked to the right to see if I was connected to the pole….and then realized I was home in bed.  No IV pole, no morning vitals check, I was home!  But I was so used to waking up early I just laid in bed a little while and then got up at like 730 am and saw the note from dad he went out for coffee.  I went outside and sat on the patio.  It was really overcast but still so nice.  Dad came home and joined me on the patio and we sat outside for awhile and talked.  He set up my umbrella which I’ll take a pic of later so I’m looking forward to having some extra shade when I’m out side.  They actually make “1/2 umbrellas and bases” so that they are flush against the building and take up less space.  Brilliant invention.

patio today

I also had dad shave those annoying little hairs on my head finally!  Dad said my Wahl’s clippers don’t come as close to the head as his so he he will bring his next time.  Here’s dad playing barber:

shaving head

Also, I noticed my eyebrows are thinning.  It’s like they threaded themselves so the stray hairs are gone but I’m thinking I’ll be losing my eyebrows soon.  Which I am totally fine with I learned how to draw them on….so we will see.

So dad went home and mom came to visit.

I set up my medications in my med cassette and set medication reminders in my phone for morning and afternoon.  I still need to update the MAR I made for myself.  There is a medication I will be starting later that’s only Mon,Wed, and Fri so I want to make it clear for myself as I’m still a little out of it.

medication cassette

These are the medications as taken from the HOPE Patient handbook:

meds for home

Mom brought me some goodies and I added one of her gifts to the inspirational tray I have on my coffee table:

inspirational tray

Birds book from mom, Jewish Tales of Holy Women from dad, the hands on the tray are of me and my son the summer before his 5th birthday, the Be Brave candle from my friend and former boss Colleen (one of her “Colleenisms”…she has all these sayings she used to tell me!), purple butterfly from Auntie Marcia that she included in her package with the cut-proof glove to prevent me from cutting off part of any more fingers….(thumb is all grown back now..), Good Health angel from my stemmie-sister Daniela who brought her to me at mobilization, and today I added the harmony stone from my mom wishing my new stem-cells harmony, and a candle-holder that was given to me from my best girlfriend that belonged to her grandmother and she wanted me to have it because my last name is on the bottom of it!  Her family is incredibly strong and I think of them everyday and they have been very supportive to me while in the midst of their own difficult time.  I’m not naming her intentionally to provide her and her mom with privacy- if you’re reading this I love you guys and thank you for everything!!!

Michelle, the NP, called to check in and reminded me to go on Monday for labs.  I told her I will be there AND I’m excited to see my stem-cell sis Daniela for her stem-cell birthday transplant!  She said “no hugging, and if you’re sick we don’t want your germs, etc…” I told her I’m not sick and I won’t hug her no problem I have lots of time to hug her.

Mom and I had lunch and I was actually hungry and ate the whole thing!  We watched the new episodes of Devious Maids on the couch and then she was on her way.

I actually took at nap from like 3:30pm-5:30pm!  I never nap!  I guess that may be my new normal now we will see.

So today I had one meal and two protein drinks as I wasn’t hungry for dinner.

Right now I’m feeling stronger than yesterday but still tired which will be the norm for a 6 months to a year.  My skin is also sore to the touch so I don’t know if that’s a chemo thing?

Next steps   

I’ll be going weekly for blood draws to Northwestern, then I’ll see them in 6 months for a follow-up appointment and then once a year for the next 5 years.  My MRIs will be done and we hope for no new lesions to show that the MS is in remission.

I’ll also call my neurologist to have a follow-up appointment.

About my Stem-Cell sister Daniela

We met on the facebook Dr. Burt page in November and realized we had our evaluations for the same day close to the same time so I told her my friend Denise and I would look for her.

We immediately clicked….she told me she is originally from Macedonia and was surprised I knew about her country.  My cousin Monica worked there for awhile helping their government with their legal system after graduating law school.

From that point on we have been pretty much inseparable texting everyday and supporting each other through this process….acceptance, insurance issues, doctor issues, symptoms issues, life issues.  Nobody really understands what this is like and it’s very hard to describe.  I had dinner with her and her husband who is also a doll, and we also all got together with a larger group a couple months ago.  Daniela came to see me during mobilization when she was at testing or another appt at northwestern, and her husband came to see me after I was admitted for transplant while Daniela was having her stem cells collected.  We decided to have a joint stem-cell birthday party with our families next year to celebrate.  We have become sisters.  Daniela said she always wanted a sister and she always wanted a summer birthday….well HSCT has given her both!  And here she was just looking to cure her MS.  🙂  So yesterday, Daniela was admitted to the room next door to mine for transplant and I passed the torch to her as I left.  And today….she was moved to MY room!  Dr. Burt didn’t like that she was in the “room without a view” and waited while the nurses moved her to my room.  How cool is that.  So Monday before/after labs I will go to my old room and watch my new sister get her new stem-cells.  🙂

I think that brings everything current.  I’ll probably make weekly updates or less often from here on out as I recover.

Thank you everyone for the support and love it’s really appreciated by me and my family:)




Post Transplant Day +3 to Day +5

Today is the best I’ve felt so far at Day +5.  Still fatigued, low appetite, vertigo, balance not great, being careful….but it’s the closest I have felt to “normal” in a long time.  I’ve been walking in the hall a bit these days but it’s not very comfortable because we have to wear gowns, gloves and masks.  I’ll have to take a pic of myself all gowned up tomorrow.

I thought I would take some pics of where I’ve been staying.  This is the view from my room today- I’m actually now looking forward to seeing the inside of Water Tower Place as I haven’t been there in years but am suddenly motivated to go.

room outside view

The hospital has a nice lounge room with computers, a TV, and a recumbent bike.


This is the view from the bike which I have enjoyed riding a couple times today.  I find it’s easier than walking around because that mask keeps fogging up my glasses and at least I can take off my glasses while I’m on the bike!  It’s also a beautiful view of the lake and the boats.

bike view

There is also a family lounge which has areas to hang out and quarters family members can use to shower, etc.

family room

This side of the family room has coffee and a microwave I think?  I haven’t spent any time in there really other than to just look around and then take pics.

family room 2

So now we wait for my numbers to fall in line while my new stem cells engraft.  It takes the body 9-12 days to engraft so my discharge date is anticipated somewhere between June 16th and June 19th.  Looking forward to being home on my patio next weekend….let’s hope the numbers agree!


My family and I have been very touched by the outpouring of our friends’ well wishes, prayers and inquiries on my health.  Thank you!


Stem Cell Transplant (Day 0) thru + 2!


So June 6th I received my stem cells back into me.  I was pretty wiped from the chemo the days previous but it was exciting to see them roll in this whole contraption where they had been frozen. That packet in the salmon color is all 20 million they collected.


Dad was there to do the blessing over them as they reinfused into my system.  Not a long process but it’s cool to see your brand new cells coming home.


The nurse is infusing them and the staff are very sweet and love doing transplants.


The next day, yesterday, day +1 I had a blood transfusion which is common.  It was a strange feeling the blood seemed to perk me up with some nervous energy but all I could do really still was watch tv and lay in bed.  Strange feeling as the body comes all back together.  No appetite and been dehydrated just uncomfortable in general but all worthwhile.

Today at day +2 drinking more fluids, still poor appetite, I agreed to try some kind of fake ice cream nutritional product for dinner….so we’ll see how that goes!  I’m not worried I’m sure it will return when it’s supposed to.

I am sitting more more today in a recliner for the second time today when I can get unplugged!  The bed constantly inflates and deflates to prevent pressure ulcers (standard, everyone hates it) but for me with pre-existing motion/nausea issues it’s been a bit of a nightmare.  So it’s been great to be able to get unplugged from the IV and sit in the recliner and watch TV and take the time to finally update this blog!

So now we wait for my white blood cell count to rise and whatever numbers they’re looking at I’m sure I’ll post later.

Not really up for phone calls it’s a lot with staff here checking on you every few hours, taking blood, etc.  It’s nice to be quiet.  But I’ve had a visit with my parents this week, dad for infusion of course and today dad and Gail.  My sis and mom may also come by this week.

My advice to those of you who will be going through this is to appoint a point person to prevent an influx of phone calls and texts and all that stuff.  Well intended and received of course but when you’re exhausted you feel guilty that you can’t really respond.

Also having my own pillow here with me has been great!  Highly recommend.  And this is a very individual experience and though those of us on the “HSCT facebook page” compare stories it’s important to remember as much as this is a snowflake diseases of no 2 cases being the same recovery is the same way.  🙂

I think that’s all I have to update for now!

Thanks to my friends and family for their support and I’m excited to see what each day holds.

PS. Oh wait the best news!  Nurse said I will only have to be hooked up to my IV 3 times a day for infusions and am then free inbetween!  I can’t tell you what joy that brings me.  No more beeping in the middle of the night because I rolled over….sigh.


PICC Line and Hospital Admission…..

Yesterday dad brought me to Northwestern for an outpatient procedure for my PICC line to be placed.  It’s in my upper arm and looks a little gross with the blood in the dressing.  The procedure itself wasn’t bad  at all.  My arm was a little sore yesterday but today it’s better today.  The nurse said she will be changing the bandage.  The PICC line has 3 lumens used for IV hydration, medications (steroids, antibiotics and chemo), blood draws, stem cell infusion and blood infusions if my platelets are low which I understand from the nurse is common with women.


I’ve had the pre-medications and completed day 1 of chemo with another 3 to go.  I also got a catheter which is fine with me because the lasix had me going to the bathroom so often during mobilization.

I had a nice visit with 2 HSCT vets and the spouse of one of them who were in town for their 4 year and 2 year checkups!  One of them was paralyzed from the ears down and she can walk and jump now!  Both of them are doing great. It’s so good to see that!

This evening I’m starting to get bone pain in my forearms which they say is not a normal side effect so we’ll see how bad it gets and I’ll take tylenol if it gets worse.  And my lips are also numb….more than usual….which I thought was maybe from this mouthwash stuff you have to gargle with 5 times a day to prevent mouth sores but they said no and again this is an unusual side effect.  Leave it to me to be unusual!

This is what I’m in for the rest of my stay.  I’ll update my blog every few days.

Stem Cell Transplant Admission (from HOPE Handbook)

Conditioning Regimen  Admission through Day -1
 Period when chemotherapy and immunosuppressive drugs are given
 Length of conditioning regimen 5-8 days depending on disease protocol
 The days leading up to the stem cell infusion are negative days and the days after the transplant are positive days

Stem Cell Infusion Day 0
 Stem cells are thawed and infused through the PICC line in hospital room
 Takes approximately 30 minutes
Post- Stem Cell Infusion
Day +1 to engraftment
 White blood cells, red blood cells, and platelets will decrease
 Blood transfusions may be required
 IV antibiotics given
 Daily lab draws

Engraftment Day +8 to Day +12 
 Engraftment occurs when cells begin renewing
 Absolute neutrophil count/ white blood cell count > 1

Hair loss and free wig program…..

As I stated yesterday in my post my sister came over to shave my head.  She brought a bottle of wine and I had my Wahl’s clippers ready.  We had fun doing different cuts but I won’t post them here because they were mostly inside family jokes and my sister did a great job with the shaving but cutting….well she should stick to communications.  🙂

So last night this is me with my newly shaven head:

bald ellie

I like it more than wearing those chemo caps actually.

Today we went to northwestern and did the “Look good feel better….” wig program where they give you a free wig!  After trying on a few I chose “the Leslie” wig because it laid the best on my head and looked the most natural.


I’m doing fine with the loss of my hair I think it’s kind of freeing.  In fact I am actually looking forward to the rest of it falling out!  My family thought I’d be more emotional about it but I’ve been ready and looking forward to it for some time because it means I’m getting closer to ridding myself of this disease.

The rest of the hair on my body is getting ready to fall out I think….I can pull on it and it just comes out.  I’m looking forward to not shaving this summer!

Getting closer to the main event….dad will come back on Tuesday and take me to get my PICC line put in and then I’ll be admitted on Wednesday for 2 1/2 weeks.

Thanks for the support!