In the past week, of the six people living in my house, four have come down with the flu. The flu has now become a family event, one that I hope is not annual. So what does someone like me do? (New born baby immunity, but lacking newborn baby cuteness) Well I went into hiding. A cousin of mine has graciously hosted me the past week so I can stay away from my family 😦

But I do have to say I am being treated like a queen.

I watch my husband, my kids and my mom on video  like I am watching reality TV. My dad who is also visiting us has somehow managed to evade the flu even with 4 virus factories around him. Iron man (I think)

While I am hiding at my cousin’s home, I have started physical therapy with theMSgym. Maybe it is cooler to say I workout 🙂 But so far I feel great getting some movement everyday. I even had workout pain in my legs after the first day. And that hasn’t happened to me in years. Pain never felt this good, I promise. I have been going through the physical therapy sessions for 6 days now. I even finished my day 7 video, just because I could. I did not want to post anything about my ‘workout’ till I was sure I was being regular and not just a one-day-warrior. I would think 6 days is a good indicator that I will continue, don’t you think?

 

 

 

 

My numbers are still climbing albeit slow. But It is moving. That is all I ask. But the numbers are still not high enough for me to comfortably mingle with the world. That is not a problem since I am not really a social butterfly BUT one of my sons has the flu and I cannot and should not go care for him 😦

I’m sitting in my bedroom with the door locked. It’s heartbreaking when occasionally he knocks on the door and says “I love you amma”. He is 3, so you can imagine the heartbreak. Meantime my other son (also 3) suddenly wants to be held like a baby. Small pleasures 🙂

My stem cells have been busy. They have been making the new healthy blood cells as planned. This particular event is called engraftment. Consider me engrafted 🙂

I have to get weekly blood draws per my discharge instructions to see how my body is healing. But since my platelets were low during discharge I had to get an additional one in the middle of the week. I think now I am out of spots on my arm where they can use me as a pin-cushion. But the good news is that the numbers are in-fact going up 🙂

My outlook on life has just changed from B&W to Eastman!  The cape is now flying 🙂

I was discharged on day +11 🙂 🙂

My WBC and Neutrophils came up enough to have me walk out of the oncology ward and that is exactly what I did. I am thrilled to be back home, needless to say. But it is a little scary to not have the experienced nurses and doctors available at the push of a button.

My Platelets are at a scary low (9K when discharged), so basically I am living life in slow motion. Terrified of any bumps and bruises. Even after all that, I have blue and black patches on me like I was in a bar fight. No idea when or how I got those 😦

But I am back. I will continue to update this blog page with my recovery. Wish me luck!

Here is a little collage of pics of all the wonderful nurses that cared for my every need. They are so selfless, you have to love them.

Here is a picture with Dr. Burt and NP Jackie. I cannot even begin to explain how kind this team has been to me.

It is Day +10 and I am still in the hospital. Usually most HSCT veterans are discharged around Day +9, but since my numbers are still not where they should be (Or they really like me in the hospital), I am still here.

I have been getting platelet infusions everyday because the numbers just don’t seem to want to improve. It is like my daily cup of coffee, I get a daily bag of OJ. 9 transfusions so far.

Also I have gotten 3 bags of Red blood cells as well. I am thinking maybe now I should not go out in the sun…maybe? My husband has promised to invite me in the house when we go back. Just to be safe.

By the way here is the segment that CBS aired about the successful publication of results from the previous clinical trial comparing HSCT with DMD. I had a celebrity crush moment when this was aired because just as the segment started on TV, Dr. Burt came by for daily morning rounds. So I got to watch his interview with Dr. Burt himself. How cool is that?

Dr. Burt said that he was interviewed for 1 hour, but only 15 seconds was aired 😦 I wish they quit calling it experimental. These are proven results. Maybe once they stop calling it experimental insurance companies will start to cover the procedure without requiring the patients to jump though all the hoops.

DMD = Disease modifying drug

This morning was a significant milestone for HSCT. Dr. Burt and team’s hard work has been recognized and he was published by JAMA. There was never any doubt this would happen.

Here is the link to the JAMA publication:

https://jamanetwork.com/journals/jama/article-abstract/2720728?fbclid=IwAR0M_5zZM_kjiYVtdW3E4q5UQkadvGYEXRCRbpCLcv6hjJ3dFnDx-efSVOs

This particular trial concluded in January 2018. The trial I am a part of will be published in 2023 and I cannot wait. Feels like I am a part of significant History and I am so super thankful to have gotten this opportunity.

It is amazing to me how everything worked out. It is safe to say that I have been aggressive with treating my disease. Constantly keeping an eye on what comes out next that is approved by the FDA. I even jumped on the Lemtrada bandwagon even with all it’s infinite side effects. But there was my fault – ‘FDA approved’. None of that worked. I am glad I figured out that clinical trials were the way to go. The humongous amount of help I got with the fund raising so I can be a part of this trial was nothing short of a miracle.

Now I just hope the medical insurance companies are taking note that this is no longer a random experiment. Fingers crossed that this is the cure 🙂

Oh almost forgot. Tomorrow (Wednesday 16th January 2019) Dr.Burt is being interviewed on “CBS This Morning” 7-9am EST. I have a feeling it is something I wouldn’t want to miss.

The good docs here have ordered that I get a blood draw every morning 1-2am to check on the usual culprits – WBC, Lymphocytes, Platelets etc.

This morning we found that the platelet numbers were at 14,000 (should be a minimum of 150,000) and they usually order a platelets transfusion if the numbers go lower than 20,000. And so that was exactly what happened. I got a platelet infusion at 3 AM this morning. The platelets look a lot like orange juice 🙂 This was unexpected.

We hoped that this bag of gold would increase my platelet count. But that was not to be. The count was at 12,000 when checked at 2pm 😦

So, I have now just completed infusion of my second bag of OJ.

And the numbers this time came back at 23,000. Since this is only barely over the cutoff of 20,000 there seems to be a good chance I will need more infusions tomorrow.

Now to wait for the next 1 AM blood draw.

 

I cannot believe it has been 4 days since I got my stem cells returned. I sure do hope they are busy at work. I have also been busy the past four days. Really 🙂

Day +1 proved to be so tiring. I felt like I was hit by a truck. Actually more like I was made of lead. Barely moved, only napped. Napping is hard work 🙂 I pull down my trusty chemo cap over my eyes and away I float to dream land. Another thing that happened was that my Hemoglobin tanked enough to warrant a blood transfusion.

I thought I’d feel a little weird about getting blood. You know, someone else’s blood, someone else’s diseases. But I didn’t have to worry of course. My Hemoglobin counts sprang back to safety the next day and all is well.

Day +2 started to look like I might need a platelet transfusion. The good doctors checked my blood twice through the day and so far my platelet count has held steady at the border line. So still dodging that ball.

Day +3 was a memorable day. I finally got out of my room and walked the hallways. 🙂 🙂 I managed to get in 2 laps of the rooms around me (~1.5 min per lap) and I cannot describe how powerful this makes me feel. Like I just ran up the 16 flights of stairs to my room here. The protocol here though is pretty strict about how I dress for said walks.

Gloves, an N-95 mask and a full gown is the mandatory requirement. No socializing with other patients and no crossing any double doors. Very very X-files but all this gives such a sense of security. The air on the oncology ward here is depressurized compared to regular air and so feels dry, but apparently this prevents a big percentage of air borne illnesses from spreading. I am so fascinated with all this science here. Truly humbling. But here is what I looked like 🙂

Also it snowed almost all day in Chicago on this day. While there is something so comforting to watching snow from inside a warm room, I cannot imagine living in this weather long though. I need the sun, I need the heat.

Today is Day +4. And I did NINE laps today! Yes that is right. Of course I spread it out through the day, but I am totally acing this. Today also marks the day I re-started on my Neupogen shots. The shots this time are expected to help increase my White blood cells count and my Neutrophils count. Right now my blood report shows these two candidates as TLTC (Too Low To Count). From what I understand once these numbers go up to 1, I am eligible for discharge.

 

I slept and slept some more all of yesterday. So… my Hemoglobin count is tanking (as expected) so that just makes me so sleepy and dull and not a particular joy to be around (my husband disagrees). But we know that this will last a few more days. We will keep the end in sight and in the meantime I will enjoy napping and being absolutely still and happy.

A little fashion advice in the middle of all this, chemo or not, this chemo cap I found on amazon is a perfect cozy eye mask when you just do not want to be disturbed.

Today is 1/9/19 – my Stem cell birthday. Happy birthday to me! Most people treat this as a second birthday since the immune system is reborn today, much like a newborn baby. While it took 8 hours to collect 4.8 mil stem cells from the bone marrow back in October, it took all of 11 minutes to infuse it all back into me today. Anti-climactic much?

The cells were brought into my room in a liquid nitrogen chamber. Very X-files like. The lab personnel then thawed them out in hot water.

 

The Actual infusion:

 

Upwards and Onward.

Tired. so tired. I have been napping a lot. I used to be the kind that could absolutely not sleep during the day. But I am so tired now that I close my eyes and it’s lights out. It is a welcome change really.

I have been getting blood work done everyday per protocol and my immune system was at a grand ‘0’ after one day of chemo. That is earlier than most patients and could explain the tiredness, but then again chemo is supposed to make you tired anyhow. The cocktail of meds being pushed into me is dizzying to remember, so I have lost track of what is being given. Just being a good patient, taking all my meds, with please and thank you.

Today is the last day of chemo ! YAY ! this means all my rouge cells are gone. Gone and goodbye and please never come back.

Tomorrow will be one more day of rATG. And maybe I will start to feel less sleepy. It almost feels like I am watching static on TV and I could definitely use some color tomorrow.