“Look good feel better” class at Northwestern

So Northwestern has this “Look good feel better….” class at Northwestern free of charge for patients undergoing chemo.  I really wanted to learn how to draw on eyebrows because that’s not something I’m familiar with as I hardly ever wear makeup and when I do it’s minimal.  One other girl was there from the HSCT group so it was good to see Whitney!  We were the only ones with hair (for now) as the rest were cancer patients.  She took the pic actually of me below during the class.  I would suggest if you’re going through this process to sign up for the class.  It will give you more confidence with being able to look more “normal” or whatever for when you lose your hair. At the very least you’ll leave with a bunch of cool new cosmetics!  🙂

Wow my hair looks dry!  Good thing I’m getting rid of it….more on that in a minute…

makeup class

Anyway, the class was really nice.  It was a great group of women and it was really cool to see their transformations from bald to eyebrows and eyelashes and color in their faces and you could tell they felt so much better.  The instructor went through all the makeup steps of how to apply the makeup including what I was interested in with how to draw on eyebrows.  They gave us each a kit with a ton of stuff that was donated from so many different companies!  When you sign up you just tell them your skin color….I’m the palest of the pale.

look good feel great

After the class I was able to visit my stem-cell sister Daniela as she was starting mobilization.  She’s doing great!

So as for everything else…..the hole in my neck from the vascath didn’t have enough steristrips on it so it didn’t close and it kind of freaked me out to see it.  But at this point it’s healing.  I’ll just be glad when I can’t see it at all anymore.

Other than that the norco hangover is over and I’m feeling a little more of my recent “normal” with just my usual fatigue and balance issues.

Yesterday my hair started falling out….not in clumps but in large groups of strands.  My head started to feel a little tender so I knew it was coming  I was prepared for it because yesterday was day 14 after chemo as others had experienced.  Today I’m losing a lot more hair and it’s coming in larger groups of strands and the amount that came out in the shower was a little unnerving but my sister will be over tonite to shave my head so that will be good.  I can already imagine how my vacuum is going to feel sucking up all this hair that’s fallen all over my condo.  Tomorrow we will go to Northwestern for the wig appointment as part of the Look Good Feel Better program….they give you a free wig and it’s by appointment.  They asked me what color and length and I told them brunette chin length to shoulder length and the lady said she will pull some styles for me to try.  I am guessing I will probably not wear it as often as other head coverings but it will be good to have when I can start interviewing and working again.

May 31st I’ll go in for my PICC line to be put in and then I’ll be admitted June 1st.

Big thanks to dad for helping plant more flowers and getting my patio together and staying with me this past week.

I’m sure I’ll post some of my bald pics tomorrow since I’m sure tonite will be fun with my sister and friend Denise if she still comes.  I can only imagine the styles my hair will be shaved into before it’s gone.

Be well!

Ellie

Harvest….

First of all, I spoke too soon with my last post about building stem cells.  Tuesday evening I felt a slight back ache and took some tylenol in an effort to prevent bone pain.  Tuesday morning I started to feel it and took a norco.  It helped a little but the pain just kept getting worse by the time 3 hours wore off of the norco.  It felt exactly like labor pain and although Drew will be 24 in July I immediately recognized that pain.  After I had a few doses in me by the evening the pain was okay and I was able to space the doses out more from the 4 hours in the morning and afternoon to almost 6 hours before I went to bed but I was more off balance and dizzy and frankly high.  Thursday morning Robert left- he was so sweet he was trying to move his flight but it wasn’t realistically going to happen and I told him I’d be fine after getting all that Norco in me.  Dad came over Thursday afternoon and I was able to space the norco farther apart so that was good.  Friday morning I woke up without pain so I took one norco in the morning with my other meds but didn’t take another.

Friday Dad and I were early at the hospital for my 730am appointment at the Rube Walker Center.  So we had some breakfast and walked around a bit.  I’m back to my walker for distance due to the extra fatigue and dizziness thanks to the norco.  So the nurse there collected a couple vials of blood to be tested to make sure I wouldn’t need a blood transfusion and then sent me to Interventional Radiology to have my vascath inserted.  They were running behind for some reason waiting on the doctor to come which kind of threw off the rest of the day but it was okay. They nurses were great and told me exactly what to expect and when and offered fingers to squeeze during the uncomfortable parts.  It really was not that bad it was more of a mental thing knowing it’s in my neck.  But it’s pressure and a little uncomfortable but the doc numbs the area so I think they do everything they can to make you comfortable.

So there are 3 lumens coming out of the catheter which is in a central vein that leads to my heart.  One of them was collecting my blood to put it through this machine to separate out my stem cells and return the rest of my blood to me, the other was for fluids and an anticoagulant and the third I don’t think they really used….maybe just to draw blood or maybe it was where my blood was being returned to me?  I don’t know for sure.  I was pretty out of it.  The tegaderm patch that covers it also pulls on your skin so it makes it hard to move your head….kind of like shrugging your shoulder and not being able to move it back down.  But hey it’s better than what we deal with in our diseases every day!  Not the most flattering pic of me (dad said I look like I ran into a vampire) but you can see what it looks like.

ellievascath

I had to wait for a patient transporter to bring a wheelchair to take me back to Rube Walker Blood Center because I was so tired and dizzy and wouldn’t have made it back there even with my walker.  So that took a little waiting too but then I went right back there and to my room at Rube Walker.  The nurse said my blood work came back they said predicted I would make 40 million stem cells and only 2 million were required!  He was a little worried about the time and I told him that there was a hold up with the doctor in IR and then transport and he said they would see if we could finish by 430 or not.  Then my transplant nurse, Michelle, from Dr. Burt’s office came and reiterated that my labs looked great, the 40 million prediction calculation and the concern about finishing in time for the lab to count.  She said that if I can’t finish by 4:30pm the lab would count them the next day but they wouldn’t admit me as they were sure I’d meet the 2 million minimum.

So my blood was collected by this Harvest Machine thing and separates my stem cells and puts them in that bag on the top right and the rest of my blood stuff like white and red blood cells and platelets are returned back to me.  It felt like there were a lot of tubes.  It’s a long process and normally they collect for 4-6 hours.  I didn’t have that much time because of my delay in IR.  I think it was maybe 4 hours at most.  So while you’re sitting there you’re attached to the machine so you can’t go to the bathroom but they offer to bring a bedpan (thank goodness I didn’t need it) and they offer food and beverages and pillows and blankets to make you comfortable in the reclining chair.  I could hardly keep my eyes open.  I wasn’t comfortable enough to really sleep but I dozed off a bit here and there.  I didn’t get any homework done that I was planning to do because it was too hard to focus but that may have been from the norco.

They decided to shut it down at 4:15pm to allow time for it to cycle out and give the lab my stemmies to count since they weren’t concerned about the number but they needed a number over 2 million so that the doctors order to take out my vascath could be followed.

machine

So at 4:25 pm the lab came and got my stem cells and had me sign off and the nurse wrapped my neck with ace bandage looking thing so I wouldn’t look so freaky walking around the hospital going to get something to eat.  Dad and I went for dinner and made a stop at Walgreens and got back early for our 6:15pm time back and the nurse showed me his pager that the lab counted 19.47 million.  Part of me was disappointed that this was half of the predicted 40 million but really they stopped early and it doesn’t matter!  I got more than 2 million!  The girl from the lab said he most she has seen was 70 million.

So the nurse then had to remove the catheter and line and the stitches.  It was uncomfortable but not bad.  Cleaning the wounds burned a little but it was necessary.  He then put steri-stips over the wounds and dressed it and applied pressure (which probably hurt the most but again necessary).  He then watched me for half an hour to make sure I didn’t bleed out.  The discharge instructions the nurse gave were to make sure that the gauze didn’t turn red because if it did I needed to go straight to ER.  He also said I could take tylenol for discomfort and gave me something to help remove the clear bandage thing in 24 hours.  He said to let the steri-strips come off in the shower after 48 hours, no strenuous activity, etc.

The clear stuff they put over the dressing still had my head in a funny position the way it was grabbing my skin but I was so tired I found a comfy position in bed (thanks to the sleep number bed from dad  I was able to adjust my head height….).  I didn’t take a pic of it yesterday but after sleeping it is a little looser so here is what it looks like the morning after:

vascath removal

So now my stem cells are being stored by a process called cryopreservation which according to the handbook is a freezing technique until I get them back for transplant.

Next steps for me are really to rest….and then next week dealing with some of the cosmetic stuff.

Monday I have an appointment at Prentice for their Look Good Feel Great program which is a free makeup class for chemo folks…..and after that I’ll be going to visit my stem-cell sister Daniela.  🙂

Thursday I have an appointment again at Prentice for a wig as part of the same program.  I told the lady brunette chin to shoulder length and she will have some wigs to try on.  Since I will have already started losing my hair by then my sister will be coming over to shave it Wed night so the wigs will fit.  My natural hair is crazy thick.

Then I’m admitted June 1st for transplant!

Thank you to everyone for your support….my parents have also been overwhelmed by the support they have received from their friends too.

Good luck to everyone pursuing this process or who are in process and for everyone else please support Kirk’s REGROW Act so we can make regenerative medicine available sooner to help with all kinds of conditions….one guy I met on a facebook page is now driving after previously being blind through a similar procedure!  All kinds of things can be cured and if your family doesn’t need it now….they will eventually.  So please help support the act by calling your senator/state rep as the bill is in both the house and senate.

https://projects.propublica.org/represent/bills/114/s2689

https://www.congress.gov/bill/114th-congress/house-bill/4762/all-actions?overview=closed

Ellie

Building new stem cells!

neupogen

So….since I’ve had my first dose of chemo last week and my immune system is suppressed this week has been all about building new stem cells.

Sunday morning at 7am Robert started giving me the neupogen injections so that my body can start making my own stem cells!  I’ll be getting them through Friday morning.  Since Robert leaves very early Thursday morning and I’ll have to do them myself Thursday and Friday I had to learn how to do them.  He asked me this morning if I wanted to try and I said “let’s do this.”  I did the injections myself and it was easier than I thought it would be.  The syringes are pre-filled and refrigerated.  They need to come out of the fridge 30 minutes before you stick yourself so that they get to room temperature.  The nice thing is you don’t have to tap out the air bubbles or anything too clinicalish.  You rotate sites on your stomach in quadrants.   The syringe has a thin needle so it doesn’t hurt when you put it in your skin and then when you push the plunger on the syringe after the medication has all dispensed this automatic closer thing comes down over the needle.  The side effect of the neupogen is bone pain which is supposed to be quite severe so they prescribe Norco.  I’m trying to avoid it by taking 2 Tylenol before injections and that has worked for me today and yesterday.  Today is when the bone pain is supposed to begin and I started to feel a little pain in my back and arm so popped 2 Tylenol and I’m okay now.  They also have me on anti-biotic, anti-fungal and anti-nausea meds to prevent any issues.

Dad will come on Thursday and spend the night and Friday early in the morning we will go to Northwestern where I will get the Vascath placed in my neck and we will then sit for several hours while my stem cells are collected.  Then they will send us to eat dinner while they get an estimate of how many cells I’ve collected.  The goal is more than 2 million.  If I have met it then we will go home.  If not, I’ll be admitted but my nurse Michelle says with MS patients it’s rarely a problem.

I’ll post more about that process called apheresis afterward.  🙂

Much love and thanks to my friends and family….especially Robert and Michael for coming out to take care of me to get this process started.

Ellie

Stem Cell Mobilization- complete!

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I was admitted yesterday for chemo for mobilization and discharged today after 24 hours of fluids.

First of all, Northwestern is a beautiful hospital.  When Michael and I checked in at the first floor desk at Prentice they said to have a seat in the lobby which is like a hotel lobby and a woman came to take us to our room.  Fancy.

The room was very nice with a couch that converts to a bed for guests.  They bring linens in the evening.

So my visit started with an introduction to the nurses and patient care tech on the first shift.  They are very systematic and organized.  I had brought my meds in their original packaging as instructed and they took them to pharmacy to be verified and then brought them back.  They still gave me meds from their supply with the exception of the ritalin because a hard script is needed for that so they gave me my own.

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Next came “Tushy Tuesday” which is a swab of your tushy to make sure you don’t have VRE.  I didn’t think it was as big as a deal as some posted in the forum….it’s quick not a big deal but I’m willing to do anything for this process.  We live with worse stuff every day.

They then came to take my blood and warned me they were doing a pregnancy test which was fine of course.

While we waited for them to bring the cytoxan (chemo) my stemmie sister Daniela stopped by with her husband.  The nurse asked me a bunch of questions and entered them into the computer after making sure I was okay with them hearing.  We laughed and told them we have no secrets we talk every day about our fun MS stuff as we bonded early on in the process when we met at our evaluations.

They also took my vitals- weight, height, temp, blood pressure in laying, sitting and standing positions.  Then they took a blood test including a pregnancy test.

So the nurse started the chemotherapy drug cytoxan through my IV together with mesa zofran and lasix and fluid.  The cytoxan was only for 3 hours but the other IV fluids were infused for 24 hours.  Mesma is a drug that protects the bladder from the chemo as it can break down the lining. The nurses said that they also sometimes include steroids but since I just had them they were leaving them out.  The zofran is to prevent nausea and I never got nauseous.  They said to expect it a couple of days after being home but I’m planning to pop a pill to prevent it as I’m prone to nausea anyway.

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I received my labs back pretty quick and everything was pretty close to being right in the middle of range.  The nurse said she hasn’t seen such perfect labs in a year. IMG_0967

The worst part of it was really the lasix making me have to pee every 15 minutes, then 20-25 minutes, and then less frequent but since I got the lasix every 8 hours it was not fun.  They offered a commode and I said I won’t use it, but thankfully the bathroom is pretty close.  They monitor your output so you pee in what they call a “hat” in the toilet.  The day nurses are great about coming to get it every half an hour to check your output in “the hat” and dump it but the night nurse was kind of annoying I had to call her her to come…Michael gave her the nickname “Lee Lee” but that’s not her real name.  There’s a reason she’s a night nurse.

However, when I repeat this in May for a few days I’m opting for the catheter because it’s very tiring.  This is my IV pole which became my shadow in and out of the bathroom.  I named her Lola.  Like Lola the pole-a.

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It’s not fun sleeping with this stuff in your arm but they do a great job of taping it to make it comfortable.

I was more dizzy than usual and definitely more forgetful.  I needed Michael to be my brain.  My suggestion for those of you in process of this is to have someone with you.  Even if they are just ordering your dinner or stopping you from taking off your IV bandages too soon or being able to report something to the nurses.

Also keep in mind you cant change your shirt 24 hours because you’re strapped in to the IV pole.  So make sure you’re wearing the shirt you want to sleep in.  I wore a tank top bra with no underwire so it was comfortable under a tshirt and shorts.

I found the bed to be comfortable but others stated they had to ask for an egg create to be comfortable.

Day #1 yesterday I had my protein shake for breakfast so I didn’t feel like ordering anything, Michael was able to get something from the lobby cafe. Lunch Michael picked up at aubonpain I had the mac & cheese  and he had the hot ham and cheese sandwich and we each had a cookie and it was a good lunch.  Later he want to Dunkin Donuts for the happy hour special the nurse told us about when he asked about coffee and they dont have it on the unit so he went to the happy hour which is open from 3pm-6pm where you can get a iced coffee any size for a dollar and he brought me back filled donuts at my request.  I ended up having the boston cream in the evening and the jelly in the morning.  Yum.  For dinner I ordered the grilled cheese and tomato basil soup which was good….they have a very nice menu.  Breakfast this morning I had the yogurt fruit parfait and breakfast potatoes and banana.  I didn’t care for the potatoes too much but generally the food is very good and there is a nice menu, you can even get snacks, I doubt anyone goes hungry there.

We didn’t get much sleep last night.  I got lasix at 9 which she thought I’d be fine around 1030 having to pee constantly but I didn’t go sleep until after midnight.  They warned me that the phlebotomist comes between 2am-4am and she came for me at a quarter to 4.  Then shift change with the PCT (patient care techs) happens at 6am and she came to introduce herself, asked if I was having pain and I told her I had a headache and I don’t remember exactly what else.  Then at 7am I met the next nursing shifts….they’re very good at transitioning and the last shift of nurses introduces you to the new nurse coming on and catches them up on your case in front of you.

Around 8:30am Dr Burt came to see me with his NPs as they were rounding.  His NP assigned to me, Michelle, came back to meet with me for paperwork and to talk about the neupogen injections and said she would have the RN bring them to be before discharge and to keep refrigerated.  She was very helpful, answered questions, said it was okay for me to bring my protein drinks when i return and they would keep them in the nourishment room for me.  She also gave me a norco Rx as the neupogen injections cause bone pain.

Were were able to leave as soon as my IV was up which was thankfully early because we were exhausted packed and ready.  We filled the Norco Rx at Walgreens there and ubered home.

I feel fine I’m just tired.

I’m going to let Michael type the caregiver perspective.

The role of the caregiver was a great learning experience regarding how everything was scheduled and also what to expect regarding medication and the effects it will have on my love one. It was my duty to continue to provide love and support emotionally but also to assist in anyway during our stay. At times when she was having to go to bathroom every 30 minutes i assisted her by unplugging her IV pole and standing by her as she walked to assure safety. I wanted her to be comfortable at all times so checking in with her periodically on how she felt or if she needed anything is important. The room temperature was an issue in the beginning but once that was figured out we were good. i wanted to make sure her meals were ordered and ready for her at all times so calling down to room service with her request,  they were very good with time only takes an hour from time food order was placed. I recommend that the caregiver bring comfortable clothes as well,  the coach bed is very comfortable. Most critical duty is listening to the instructions and information being given by clinical care team. In our case she has periods of forgetfulness so i had to be her brain at all times so that i could remind her or repeat what they had told us during the stay. Finally at the time of discharge it is important as the caregiver to really understand the discharge information that the team gives you and the monitoring that will be involved at home from dietary needs, potential side effects, what to do if she runs a temperature, when to give injections and how to give as well, and when the next appointments are and what to expect at them.

Hope this info is helpful….also if you’re going thru this keep your H.O.P.E. handbook out as it’s very thorough.

Thanks for support from family and friends!

Ellie

 

 

Almost time to start chemo…..

I’ve been doing really well the past week.  I think the good part of the steroids kicked in, or really, the crappy side effects went away.  I haven’t walked with the walker since last weekend and that was once for distance since my gait is off.  I’ve used the 4-prong cane but last night went out without any assistive device!  I feel much more steady and strong.  And even though my gait is still a bit off I’m more nervous about tripping over a cane than I am falling without one.  So I’m hoping to say goodbye to my 3 friends here….the collapsible cane my mom gave me, the 4-prong cane I had to upgrade to, and finally the walker that really became a major help when I needed it.

IMG_0958My other symptoms have been improving too.  I haven’t had confusion like forgetting how to use the microwave or any of the other crazy (and frankly scary) stuff from before….I still have some forgetfulness like repeating myself but one of my nurse friends said it’s way better.  The nausea has subsided.  I have way fewer spasticity problems and spasms.  I improved a great deal with P/T…..Brett, my physical therapist, said when I started my number or score or level or something was at like 43 and now I’m up to 52 which means I’m only borderline fall risk now!

My advice to people considering or going through HSCT….take the steroids if you need them.  No they’re not fun but they prevent further damage while you’re not on a DMD and decreasing the swelling in your brain and spine means your body can communicate better with itself.

Weather has finally been nice in Chicago the last few days so I was able to plant the flowers dad helped me to pick up.  I’m totally planning to rehab on my patio when I get home as long as I’m allowed to.  So many rules!  But I will walk on hot coals if they tell me.

So tomorrow morning Michael arrives and we’ll celebrate Mother’s Day with my family.  Hopefully we can have lunch outside if it’s a nice day.

Then Tuesday morning we’ll check in to Northwestern at 7:30am for chemo!

I’m feeling very positive, optimistic and calm.  But like I told one of the future HSCTers (you know who you are) the roller coaster of emotions about this thing is unpredictable.  I’m just very, very grateful that I have the opportunity to have this transplant.

I plan to keep my blog updated as I go through this process.

Thanks to everyone for the love and support.  🙂

Ellie

Ready to Start!

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It’s almost time to get a new immune system!

I got purple highlights in my hair to have some fun with it before I lose it to chemo in a few weeks.

At my last visit with Dr. Burt’s nurse Betsy they did some testing and I found out my EDSS (expanded disability status score) which is a measurement of disability.  It’s at 4.5.  This is significant because it shows my level of disability prior to transplant and I’ll be scored again at some point after….6 months maybe?  I’m excited to see how I improve.  Here’s a graphic of what the scale means-EDSS scale

I had another round of steroid infusions which was pretty uncomfortable last week with the side effects of steroids but this week I’m starting to feel much better.  I’ve been going to P/T twice a week and feeling stronger.  The last three days I left the house with my 4-prong cane instead of my walker which seems to be okay for getting to and from P/T with getting in/out of the taxi but when I used the cane to go to dinner last night my friend ended up just grabbing my arm because I was still holding on to the wall of buildings while walking with the cane to a restaurant.  But I’m optimistic.  I do feel less dizzy and nauseous but my balance is still off quite a bit and they use a gait belt with me at P/T.  I’m also taking a couple of courses toward my Master’s degree in Healthcare Administration- Gerontology and US Healthcare Systems so it’s nice to feel better to be able to better focus on school.  I can’t wait to be able to go back to work.

My dog Zoe is with my friend Kim and her daughter for a few months.  I have housekeeping coming on Monday to do a deep cleaning, I’m going to buy flowers for my patio and do some gardening before I’m no longer allowed to touch dirt after chemo….I’m planning to hang out on my patio while I recover.  It’s peaceful out there.  I looked up the type of chemo and it doesn’t say it makes me photosensitive so I’m hoping I’ll be okay outside but I’ll double check.

Michael will be coming on the 8th and I’ll be starting chemo on the 10th!  I’ll update the blog as I go.

This week Dr. Burt was at the Vatican speaking at the conference at regenerative medicine! I feel so fortunate to be in this treatment with the best doctor in the world for HSCT at one of the best hospitals.  Here’s some links for more info:

Richard K. Burt, MD

 

Thanks to my friends and family for the support!

Ellie

Pre-Transplant Testing…..done.

I can’t believe how fast time is moving.

Monday I had my “vein check.”  They didn’t actually look at my veins….they went over the vascath that will be placed in my neck for collection of my stem-cells.  It looks icky but I think that’s more of a mental thing because of where it’s located.  They will give me two stitches to hold it in place.  My understanding is that it doesn’t hurt and I’ll just feel some pressure when it’s inserted.

vascath

I also went to labcorp across the street to have my blood tested to ensure the charcoal drinks washed out my last DMD Aubagio.  The first time I drank this cocktail TID my level was still too high by like 0.01 something.  So now it should be out of my system.

Yesterday, Tuesday, I had my MRI completed and went to P/T (not related to the study just because I need it because I’ve been declining).

Today I went to meet with Dr. Burt and complete the other tests like the 25-foot walk and the 500 foot walk, peg test, the number test and I forget what else.  He said my lesions are enhancing and I need to get on IV steroid infusions again.  This is the 3rd time in less than a year.  I’m a little concerned about the effect on my bones and more weight gain but it’s better than risking permanent damage to my brain and/or spinal cord.  I haven’t received the MRI narrative yet so I’m not sure exactly where the lesions are or how many there are but I was expecting the lesions to be active since I’ve declined quite a bit.

Sooo…..next steps:

Friday I’m going with my sister to get my hair colored something crazy like purple since it’s going to fall out anyway from the chemo.

Next month Michael and his husband Robert will be coming for a week each to help me get started with chemo and then neupogen shots.  I’ll be admitted May 10th for first dose of chemo.

In the meantime I’m volunteering to help Senator Kirk’s office with the REGROW Act. If you are reading this you need to stop right now, and contact your senator and state rep and let them know to support the REGROW Act.  You can find more info here.  http://www.celltherapynow.org/

My other issue is advocating for insurance coverage equality for HSCT as most do not have insurance covering the procedure.  People are forced to sell their homes or raise money in order to have this procedure.

Please, tell everyone you know, in every state, they must contact their legislators.  This not only helps MS but any condition that can benefit from regenerative medicine.

Thank you in advance for reaching out to your state reps and senators!

Ellie

Revised Schedule…..and Sooner!

So apparently my neurologist’s request for me to get in sooner was taken seriously.

My new schedule is:

4/11 Outpatient testing- vein check and MRI

4/12 Outpatient testing- labs

4/13 Meeting with Dr. Burt

5/10 Admit for mobilization

5/11 Discharge after 24 hours IV hydration

5/15-5/19 Neupogen injections at home

5/20 Admit for Harvest of Stem Cells

5/21 Stem Cell Harvest #2

5/22 Discharge if cleared

5/31 PICC Line Placement outpatient

6/1 Admit for pre-transplant and stem cells

6/6 My stem cell birthday!

6/16-6/19 Discharge depending on my numbers

I’m relieved to get in sooner but am bummed that I’m not going to be with my stem-cell sister Daniela as I had hoped I would be.  😦

Also bummed I’ll miss my nephew’s 4th birthday but we’ll have to facetime.  🙂

Got my transplant schedule!

Yesterday was a big day……I went to the neurologist for a follow-up and received my schedule from Northwestern.

The neurologist asked how I’m doing and I told him I’m continuing to decline……he noted that when I first met with him I was walking, a couple weeks ago I had a cane and yesterday the walker.  The neurologist wants me to start Acthar injections.  I told him I’d think about it.  I’m not crazy about starting another medication and dealing with more side effects when I’m so close to getting in.  At the time of the appointment I hadn’t received my schedule yet so my neuro emailed someone at Northwestern asking for me to be scheduled for transplant ASAP.  He also said I should get labs drawn to have my thyroid looked at……I told him that I’m tired of doctor’s not wanting to treat it for it not being “bad enough.”  I also asked him if the symptoms I’m having (left nostril, left hand and right toes electric “zaps”, calf aches, spasms in arms and legs and feet, left hand shaking, memory impairment, increased confusion, trouble writing and gripping pen, lower lip numb, etc) and he said “yes it could be.”  i looked it up online when I got home and sure enough the thyroid does control neurological function.  Great.  So I will let him know I’m good with doing labs and will also ask him to have the iron level checked…..for the past couple of years my iron levels have been high which I thought was just a miracle since I don’t eat anything with a face and dont even drink milk anymore…..but it turns out there is this thing called hemochromatosis which is another issue I was supposed to have checked out but I wanted to deal with the MS first…..I forgot to mention it to him.  I’m just hoping a new immune system will eliminate a lot of these issues.

So….the dates….subject to change.  In fact, I’m hoping a couple of the dates change so that I can get in sooner in order to get some relief faster but also to be with my “stem cell sister” Daniela since we’ve been going thru this together ever since we met at our evaluations in November.

May 9th  Outpatient testing- labs

May 10th Outpatient testing- vein check and MRI

May 11th Meet with Dr. Burt

May 16th medical team reviews lab results

May 30th Admitted to Northwestern for mobilization  (Taken from the handbook- Mobilization and harvest refers to process of collecting stem cells in advance and preserving them until transplant occurs)  I’ll be receiving heavy chemo basically and will remain inpatient for 24 hours.  I’ll give more info on this process as it goes.   I will lose my hair about 14 days after this so I’ll be shaving my head beforehand to avoid the mess and hassle. I’m totally fine with it.

May 31st Discharged from hospital after 24 hours and IV hydration.

June 1st- start taking temperature twice/day until Harvest.  If my temp goes above 100.5 I have to go to the ER for IV antibiotics.

June 4th thru June 9th or 10th- I start taking neupogen injections (taken from the handbook- “G-CSF is used to treat neutropenia, or low neutrophils. It also helps mobilize stem cells into the peripheral blood system for collection. G-CSF is given as a subcutaneous injection. The needles used to give the injection are very small.  The medication will start five days after receiving the cyclophosphamide and will continue daily until the stem cell harvest is complete.  The dose is 5-10 mcg/ kg  Must be kept in the refrigerator until ready for use.”

June 6th Blood Draw

June 9th – Inpatient for Line placement and harvest- again I’ll get more into this when the time comes…..they’re taking my new stem cells and harvesting them.  🙂

June 11th- discharge if medically cleared

June 21st PICC Line Placement outpatient

June 22nd Admitted for conditioning medications and pretransplant IV meds through june 26th

June 27th Stem cells injected!

July 7th-10th Discharged sometime in this period depending on all my numbers…..

July 12th Weekly lab draw #1 of 4

July 19th Weekly lab draw #2 of 4

July 26th Weekly lab draw #3 of 4

I’m assuming the last one is a week later on August 2nd.

As soon as I get a final schedule I’ll be lining up my caregiving team and make arrangements to bring Michael and Robert here as well as lining up and scheduling my local caregiving team…..Denise, Jonathan, Roberto, and my family at this point…..

I’m grateful to be going through this process and will keep my blog updated as best as I can each step of the way.  I’ll also provide more information about each step as it occurs.  It’s a lot of info.  🙂

Thanks everyone for the support!

 

Cigna approved transplant!!! Happy Leap Year day!

I got a call from my transplant case manager- Cigna approved my transplant!

Such a relief…..I would have sold my condo to get this transplant done.

I informed my transplant nurse at Northwestern and she said as soon as her insurance people give her the all clear she will get the ball rolling.  I can’t wait to get my schedule so I can get my “team” in place and Michael can request time off of work, we can arrange for travel, etc.

Physically I’m continuing to decline so I couldn’t have gotten this approval at a better time.  I think the steroids are starting to wear off because I’m getting spasms- mostly in my left arm and leg but also my right foot. My left hand also shakes sometimes.  Cognitively I’m having some issues too, I have to set the timer so that I don’t forget I leave something on the stove when I walk away.  I also cut another finger (didn’t cut any of it off this time) because when I was pouring soup that I made from my ninja blender into storage containers I forgot to remove the blade and it fell out and grazed my finger.  Thankfully it was just like a paper cut this time.  By the way, that part of my thumb grew back it’s pretty amazing what the body can do.  Anyway, I go back to see the neurologist tomorrow.  I’m not sure what he will want to do, I really hate to do steroids again.  I’m thinking I can hold on like this until May for transplant stuff but it may get pushed into June as a lot of people have been scheduled already.

This past week I’ve been using my walker to go down the hall to the fitness room in my building and doing strength training in my arms and legs so my muscles get stronger and it’s working.  My balance is still terrible but I’m okay holding on to stuff while in the house and only use my walker when I leave my condo.

Feeling very grateful today and I’ll update the blog when I get my schedule!

Thanks everyone for the well wishes and support!