🙂

We landed in freezing Chicago on Wednesday and things have been looking up since. What a welcome change in 2019.

I had been so terribly careful the past few months to ensure I do not get the cold. Again. I was so terrified of the common cold being a party pooper again. Our kids have been shipped off to a cousin’s home for a few months, since we all know it, kids are the most competent germ carriers in existence.

This is what I looked like flying in to Chicago. See the paranoia?

Not only did the mask keep germs away, it also kept people away 🙂 Win Win !

Thank you sweet Becki for this gift.

Also, this is a little endorsement for Southwest Airlines, for very kindly giving me priority boarding 🙂 Again…the power of the mask.

So Chemo therapy has started. Yesterday was DAY -5! Here is the schedule with days counted -5 up. The 0-th day is the Stem cell transplant day.

HSCT is not a cure for MS. It only aims to halt progression. But since ‘I’ am the one here risking ‘my life’ with this, I have decided to think of the halt-of-progression as a cure. I know that several HSCT veterans think along the same lines and I can absolutely empathize. I have had MS for 9 years now. Chemo therapy is the step to kill my old immune system, the rouge system that attacked my own body for lack of better work. So going along the lines of my ‘cure’, I am calculating that today, after 1 day of chemotherapy, I have 1/5th of the cure flowing in my veins. Do the ‘mathematics’ (not math, see? I’m sticking to my very Indian roots):

1/5th of the cure means that I have only had (9-9/5) 7.2 years of MS. Too geeky?

Okay never mind. Important take away is that I am feeling hopeful.

 

To anyone who reads my humble blog I wish you a very happy 2019!

Tomorrow I travel to Chicago for phase 2 of the treatment. Yes finally. I am praying to every planet/star/rock in our universe to vibrate just right so there are no bumps this time.

I have been resting and perfecting the Smitha shaped depression on my bed and I do not have the cold. So this is a good sign. Correct? I sure hope so.

Lets hope this is my year. Also this happens to be the year of the pig. oh well.

 

I had a nurse come home and reach for my brain through my nose. In her defense she was only doing what she was trained to do, and she did give me fair warning. But my brain was not ready. Before anyone imagines too much, she just took a nasal swab to then go determine if I had any of the viruses that could put my chemo on hold.

So apparently I have RSV – medical terminology for a bad cold (is there any such thing as a good cold? I wonder….I diverge) and a bad cold is bad for chemo. So…Chemo is postponed to January 😦 😦

This just drops a spanner in my otherwise busy life’s machinery. Do not laugh, I did have a lot of my next steps worked out.

Oh and I am no longer -6 days old. My new dates are this:

Thursday, January 3, 2019

Triple Lumen PICC Placement

Friday, January 4, 2019

Admit to hospital

Days -5 to -1 – Chemotherapy days. Wiping out the immune system to create way for stem cells and then a brand new immune system

Day 0: Jan 9 2019 – STEM CELL TRANSPLANT DAY (STEM CELL BIRTHDAY)

Day +1 to +8 – Neutropenia 

Hope these dates stick 🙂

 

 

 

Ideally I am supposed to fly out to Chicago this evening (12/5/2018) But I have a cold. Yes the common cold has become the barrier to my leaving.

Chemotherapy is not done when you have a cold since it could potentially mean any number of infections. I have been given one extra day so we can reassess tomorrow to see how I am feeling and if all is good I can go to Chicago and all will be right with the world. If not, then my treatment will be postponed a whole month, because there are no more dates in December. Because Christmas.

I am trying to get a test done that will check for infections (called RVP), but since Austin is a ‘Small’ city, I am having trouble finding labs here that will give me results in a day. I will update this page with what actually transpires soon. But for now, I just get to wait to feel better for another day.

I have 21 days remaining till my stem cells, all 4.8 mil of them, are returned to me. This will mark my ‘Stem Cell Birthday’, basically touted as a rebirth. Sure why not. My age right now is -21 days. If nothing the most important take away from this blog post is my age 🙂

After my ‘Mobilization’ chemo (Oct 16th) and ‘Harvest’ of stem cells (Oct 26th), I was told to watch my health like a hawk and NOT get sick until the next set of chemo and stem cell re-introduction. Well while I have no real say about getting sick, I like to believe I have done a stellar job of keeping myself healthy. All this is thanks to rigorous exercise and a well researched supplement regimen. OK okay okay that was a lie. All this is thanks to my husband and my parents taking over the reins of the household and not letting me do anything that requires me to move more than an aggregate of 5 muscles at a time.

I’ll be back in freezing Chicago on Dec 5th and until then I’ll continue being well and by that I mean I’ll continue being a lazy but a happy soul. I’ll leave you with a video of me attempting to walk heel-to-toe (who ever does that??) and *hopefully* a year later I’ll link another video of me doing the same thing, only that time I’ll blow everyone’s mind with my wonderful balance.

https://photos.app.goo.gl/mWrTRYDJG4YjWmd38

 

 

 

Hair fall is expected after chemo. My nurse told me to expect hair fall starting on the 28th of October.

Didn’t happen.

But I would rather not wait. So I went to my favorite hairstylist and got me a buzz cut. I am not sure if it is liberating or freeing or any of that. What I am sure of is that I love it.

My husband wanted to get a buzz cut as well. I think it was meant as a sign of solidarity BUT I do believe he was jealous of my haircut 🙂 So I gave him a buzz cut at home. We did manage to confuse our kids proper. They were convinced we were not who we claimed to be. What a riot it was 😀 😀

Anyways, here is a fun little game for you. Spot At-least 6 differences.

After six Neupogen shots it was time for stem-cell harvest.

We had a few hiccups, but it is done and over and I am back in Austin!

Like I mentioned previously, my White Blood Cells and Platelet count took a hit. Low WBC meant that I was “Neutropenic”. This for me translated to stricter diet restrictions, No going out in crowds, Wash hands A LOT, Rest A LOT. For this protocol, the medical team expects to harvest at least 2 mil stem cells. But low WBC had the team worried that I might end up needing a second day of harvest to be able to get enough.

The low Platelets was another challenge. The way the harvest is done is this: The patient is hooked up to a blood centrifuge. The blood from the patient makes its way to the centrifuge which then separates the stem cells based on molecular weight. The remaining blood then simply snakes back in to the patient. Now, platelets happen to have a very similar molecular weight to stem cells. The worry was that my platelets would deplete further through this process and then I would end up needing platelet transfusion. The one good thing for me is that my blood type (O+ve) can receive platelets from any other blood type. The second good thing for me was that this never came to be. Whoohoo! My platelets held steady.

This is a picture of me sporting the vas-cath through which the harvest was done. That was a catheter placed in the jugular vein. Queasy? Don’t be. While it was not something I fancied, it was not too bad.

Something I never realized before. White Blood cells are actually ‘White’. Duh! I know, but it never occurred to me before this. So ideally, the stem cell collection bag should look almost a dark burnt orange in color. But thanks to my low WBC, this is what I got…

Not complaining though because I got a stem cell harvest of …wait for it… 4.8 million !

Okay to be honest that is not such a high number. Many people end up with upwards of 20 million cells. But I felt like an overachiever nonetheless. I was thrilled to have that vas-cath removed and have it be a thing of the past.

Now the first part of the treatment is over and I am back in Austin. Back home. So relieved.

The next part of the treatment starts in December. Till then I have to rest and recover in Austin and be ultra careful to not fall sick. Not even the common cold. Because this will postpone the next chemo steps and I do not want that for sure.

Here is how I understand this first part of HSCT

One dose of chemotherapy that calms down the immune system, followed by a week of daily Neupogen shots to entice the stem cells from the bone marrow to the blood.

The immune system is my enemy right now and the unwanted effect of Neupogen shots is to get the immune system overactive. So maybe the chemo round now makes sense?  Chemo counters the overactive immune system.

Then the ‘Harvest’ day is when the stem cells are picked out of the blood and frozen for use in part 2 of HSCT.

I am currently in the middle of the Neupogen shot days.

These are daily injections that are given to a fatty layer of skin. I belong to the majority population with no dearth of fatty tissue, so the shots have been easy so far. Lets hope the neupogen is doing it’s magic.

BUT things to note:

The first round of Chemo was a big hit to my White Blood Cell count. The hit was expected, except maybe not to this degree. So wash hands, stay away from sick people, eat only cooked food (no salads), wash hands (did I say that already? Never mind, it is important)

Another thing the chemo has done is that it has depleted my platelet counts. Google will give you all the colorful side effects of that, but for me this has meant fatigue. I now have a fancy new cane to walk around with. No more saying “Oh it is just a twisted ankle” while hobbling around with my hiking pole. Also since a low platelet count can mean easy bruising I have been tasked by my family to not move a muscle. You know how you want to do the opposite of the doctor’s orders sometimes? No? Well, I want to go for a jog.

My next update will be on harvest day and hopefully when all that is done I get to fly back to Austin to my little-big-boys.

Technically day-2 because a night has passed (I should know, haven’t slept a wink), But really the drips were set to take 24 hours, so Day 1?

Either ways, mobilization chemo is done. I am not bald yet in case you were wondering.

Dr. Burt came for his rounds along with all the nurse practitioners just to check on how I was doing. Thanks to the steroid high I was doing just fine even with the total lack of sleep the night before.

Not an ultra eventful day otherwise. Which is a good thing, I think.

 

It is real! Treatment started this morning 🙂

This journey has been unexpected to say the least. I first heard about this trial on BBC, then a mad rush to raise funds and now sitting here hooked up to medicines. Yup it was crazy.

One day before all the craziness began, my dear high school friend took me around Chicago. It might be expensive but I have to admit it is a beautiful city.

Back to my current residence 🙂

For those that are interested in HSCT: I have so far been given Saline, steroids, Mesna, Lasix, Anti-nausea meds, and the all important Cytoxan (Chemo drug) – all on IV so it goes straight to where it counts.

I got done with the chemo in 2 hours. Now I am left with the saline and mesna which drips down slowly till about noon tomorrow.

So for the next 16 hours I’ll polish my skills of ordering people around (the husband man), while the good stuff continues dripping.