Zip-lining Across Niagara Falls, Day -4

I haven't had the chance to sit down and write up a post in the last few days. Mom has started chemo and I've been busy helping her out.

She started cyclophosphamide three days ago (chemo). Today is her fourth day. She has been handling it very well, up until today. Today she experienced a fair amount of vomiting and hot flashes, and a loss of appetite. Today was the last day of chemo, the next three days she will receive antithymocyte globulin. The staff administers anti-emetics to prevent nausea and vomiting, although today she didn't hold up well.

Yesterday we were shifted from the 6th floor to the 5th floor, into the new BMT (bone-marrow transplant) ward. It has been built to assist bone marrow transplant patients and is very new. I didn't believe we were actually moving at first, as we've been told a few times before we were going to be moved but it didn't pan out. We were told about the new ward awhile before coming here.

The new rooms are very similar to the one we had on the 6th floor. You can tell they are brand new as there are some paint marks on the furniture and some little touch ups here and there. There are a separate set of doors you walk through when on the 6th floor to get into the ward. The room we were given was a fairly large room, a bit bigger than the last one we had. Everything seemed to be going well other than having issues acquiring an IV pole for Mom to maintain mobility, up until bed time. Mom was worn right out from the chemo and was woken up at 5 AM yesterday morning, so she really wanted to get to bed. I got her all set up and turned off the lights, only to notice that it sounded like a theme park outside our door. The room wasn't set up very well in terms of keeping sound out, also keeping in mind that our door is directly in front of the nursing station's desk. Asking to keep quiet wasn't exactly an option - they tried their best, but I understand that nurses need to talk to one another, it's part of their job. An hour later a cleaner came into our room and flipped every single light on, and began cleaning. Mom was livid. Understandably so, since she was so tired out. 

I spoke to Dr. Kharya and his team today about the noise and explained that the room would not work out, and thankfully we were able to be switched to a room at the end of the hall, away from the nursing station. It's odd to me that the noise is such an issue on this floor, as our room was right outside the nursing station on the sixth floor as well, but it was never a problem. The room we moved into is about 1/3rd the size of the one we had before, so I had to sacrifice my working desk for homework. The bathroom is the same size and the room has almost exactly the same furniture in it. That is quite alright with me though, what matters is Mom's treatment and ability to get a good rest. It's more cozy this way, anyway!

So it is apparent that there are some things to be fixed on this new floor, but that is to be expected as we are the first patients to be here. The new bathrooms have better hand rails for people who need them. The new flooring doesn't like to cooperate with the IV pole wheels though. We made an attempt at using different IV poles but none of them seem to roll smoothly across the laminate yet.

A few nights ago Mom and I were sitting down watching a movie when she turned to me and randomly said, "when I get better, I want to go zip-lining at Niagara Falls." It caught me off guard as it was such a random thing to say. I asked her "where did that come from?", and she said "because I'm excited to live and be able to do things again". I teared up a bit but didn't show her. For the last few years I've asked my Mom to do different things with me, but she wasn't able to. From my high school graduation to the night of my prom, she wasn't able to participate in normal activities, and to many this was confusing. Her disease has been mostly cognitive decline, so although she is mostly physically able, she has great difficulty processing things and carrying on regular social interaction. She had to sit at the back of the room for my graduation because being in large crowds made her extremely anxious, and she was careful who she spoke to, because all too often she could not keep up with the pace of regular conversation. She would leave events early due to fatigue, and she would have to cancel on plans because she didn't feel like she could mentally process the thinking required for an activity. Knowing that my Mom is looking forward to trying things again brings me hope. Some days it feels like my Mom has gone missing, because the woman I'm speaking to can't understand what I'm saying and her brain can't form the words she wants to speak. 

For now it's some more rest and antiemetics for Mom.

Harvest Time, Day - 8

Today Mom had her stem cells harvested! They collected 1,209,000,000 stem cells, or 13 million per kg of body weight.

The day started early with some blood work and preparing to be moved to the transfusion unit of the hospital on second floor. Once we were downstairs, we had some breakfast and Mom's PICC line was set up.

A peripherally inserted central catheter was inserted on the right side of her neck. They had me leave the room for this part, and at first I didn't quite understand why, because I took precaution to make sure I didn't bring any potential bacteria in. Once I came back in I figured out why. There was a fair amount of blood on the pillow and her hospital gown, and I have to admit, I am slightly queasy at the slight of blood! So I am glad I wasn't present.

She said it wasn't painful, (as they administered local anesthetic first) but that it was uncomfortable. The funny thing is, my mom is poked at least twice daily with IV's or needles/injections, yet she has always had a relatively severe phobia of needles. I realized how far she was willing to go to treat her MS when I watched her take her first IV here like a champ, not even freaking out.

After the line was inserted, there was some vital checks and an x-ray to ensure that the line was in proper place.

Once everything was ensured, we met Dr. (Brig.) Anil Khetarpal, the director of the Blood Bank and Transfusion Medicine unit. He was a very humble and respectable Doctor. He made the procedure easy to understand, and we felt very confident in his capabilities. Naturally I'm a very curious person, so I question everything out of the sheer sake of knowing more about the world. I asked him how the apheresis machine worked, since there was a million tubes and different moving parts. He brought me over to the machine and happily explained from beginning to end how Mom's stem cells were collected. Basically there are two tubes connected to the PICC line. One takes blood out, while one puts the blood back in. The tube bringing the blood out draws it out using pumps, and then the blood is separated into different components using centrifugal force (spinning really fast). The needed components of the blood are collected into sterile bags, and the unused components are returned to the donor via the return line. It was fascinating. I really appreciated the opportunity to hear about the details of it all. His two assistant doctors stayed the entire duration of the harvest watching over the apheresis machine, explaining more of it to us.

One thing I love about Artemis is that their website has a directory of all of the doctors in their facility, their qualifications, and their title within the staff. Dr. Khetarpal's assistant physician was telling me about how he has so much experience in his field, and how he was actually a high ranking official in the Indian army at one point. Upon looking at his profile on the Artemis website, I was floored. He has over 29 years of experience in the practice and teaching of pathology in various military hospitals. Here is his profile: http://www.artemishospitals.com/about-artemis-hospital/for-patients/list-of-doctors/doctor-details?ID=14 It feels good knowing we are in very capable hands.

While I'm at it, here is the fabulous Dr. Gaurav Kharya's impressive profile as well:
http://www.artemishospitals.com/about-artemis-hospital/for-patients/list-of-doctors/doctor-details?ID=202

It only took a little bit over two hours for enough of Mom's stem cells to be collected. Typically they expect the procedure to take anywhere from 4 hours or more, but they were pleasantly surprised at how well the harvest went with Mom. She collected more than needed for transfusion, a whopping 13 million stem cells per kg of body weight.

Once harvesting was completed, they disconnected the machine and kept Mom for a few hours for monitoring. We had some lunch brought to us and then went back to our room.

Tomorrow Mom will start the cyclophosphamide (chemotherapy), and continue for 4 days when her immune system has been ablated. She will also be given ATG later in the week.

She feels really pleased with the results of her harvest, and in general feels strong still!

The final product!

On our way down to the transfusion unit, bright and early at 5:30 AM.

Mom waiting to meet the Doctors.

Getting set up.

This is Mom's PICC line all wrapped up. 

Nervous, but still smiling!

The team, including Dr. Khetarpal and his assistant physicians.

You can see the two lines that connect to Mom's PICC, one drawing blood out, one bringing it back in,

This is the apheresis machine used to separate the components in the blood. Super cool to see,

Some of the stem cells collected during the first cycle.

The final result - what we came here for!

Waiting for Harvest - Day 18

Today Dr. Kharya confirmed to Mom that her blood counts are very well, so we're looking at potentially harvesting tomorrow. Harvesting involves having a PICC line inserted (peripherally inserted central catheter) into the side of Mom's neck, with a tube that leads down into her chest.

They withdraw blood through one tube and it flows back into Mom's body through another. As the blood goes through a machine, the stem cells are collected and the rest are sent back. Dr. Rishi said it's similar to "skimming the top of milk to get cream".

After the stem cells are removed they are cryo-preserved until it's time to re-introduce them to her body. After harvesting has completed, Mom can begin the 7 days of chemotherapy to ablate her immune system. I'm a tad nervous about potential infection, but she's not worried.

Yesterday Mom experienced some moderate lower back pain. Bone pain is apparently fairly typical in GCSF injections, as it encourages the bone marrow to push the stem cells into the blood stream. Some Advil quickly helped relieve the discomfort.

Yesterday we finished watching The People vs OJ Simpson: American Crime Story, and then started watching a documentary called Cash for Kids, a story about a judge in Pennsylvania who was convicted of accepting money for sending juveniles to detention centers over minimal crime.

Mom's been spending some time getting to know the nurses here better. She likes asking them about their aspirations and why they enjoy being a nurse. There is one that is particularly sweet, shes very petite but nonetheless takes care of Mom well. There's always a smile on her face. Many of the nurses look quite young, but they've told us about how they went to school to pursue a 4-year Bachelors of Science in nursing. All in all, the staff here is very nice.

Mom is planning to head to bed early tonight, to make sure she's well rested for the day ahead, in the case that they are prepared to harvest her stem cells.

Not much else is happening, other than our typical daily routines. We're both missing home though.

Trying to locate an Indian Tim Hortons - Day 16

Mom's been doing well, she doesn't feel bothered during the daily CGSF injections. Today is day 6 of the daily cell-growth factor injections.

This upcoming week, sometime between Tuesday and Friday, Mom's stem cells will be harvested depending on her blood counts. For now we're just working on getting lots of them floating around in her blood stream.

Yesterday I went with John (an attendant of another MS patient here) to the foreign registration office. Someone from the hospital took us there and helped us get the paperwork together. Mom just has to go to their office at some point after discharge to give them her signature in front of a witness. You know, bureaucratic things. If you have a medical visa, regardless of the length, you apparently have to go register at the FRO within 2 weeks of arrival.

I came back to find Mom worried, as she had thought they had deported me because I took a few hours longer than expected, LOL. 

She finished watching a documentary called 13th, about the black lives matter movement. I caught the last few minutes, it sounded really interesting. Then we watched Forrest Gump, and then a documentary called The Internet's Own Boy, a story about a young man named Aaron Swartz who had a large role in the politics of technology but was sadly convicted of a cyber crime. It was really good. 

Our typical day consists of the nurse coming in at 6 AM to take a blood sample from Mom, and then they check her weight, temperature, and blood pressure. Yesterday I decided to check mine while she was at it, and I was surprised to find that I've lost a little over 15 pounds since leaving Canada. I can't believe that, since all I do is sit in a hospital room and eat fruit! 

After that Mom sometimes has a shower, and someone comes to clean the bathroom and floors. They change the bedsheets and give her a new hospital outfit. The doctor visits at some point during the middle of the day to make sure everything is okay, and the dietitian pops in to go over what the meal plan is for the day. A separate person comes to take my order for the day's lunch and dinner, and the following day's breakfast. 

Mom and a few others were allowed to go out for a brief while yesterday as their immune systems are not yet compromised (still within the hospital though). They had some coffee or tea in the cafeteria and chatted about each other's experiences so far. We have a group chat with all of the HSCT patients here and a few of the attendants, and boy are they funny. They keep the mood light with humour and it's nice to have a small community where you understand what one another are going through.

A physiotherapist has worked out a plan for Mom. She plans to visit her for a half hour to an hour per day to do some strength exercises to help her balance. She noted how Mom is still relatively strong. Many of the doctors and assessments here have noted that Mom is in a good position to be receiving HSCT. A lot of MS patients are required to do a wash-out period if they've been on MS medications, which can hinder their possibility of treatment. Mom refused to take MS medications as they made her extremely sick and were crazy expensive, and while people thought she was nuts for refusing MS medication at the time, her resistance to accept what she was handed has proved extremely beneficial. She was also diagnosed with MS a relatively short while ago in comparison to most HSCT patients, and generally has no other health complications.

What some people aren't always aware of, is that some times when you go off of an MS medication you can have a relapse in response to the withdrawal. This is what happened to Mom. She had to stop taking Aubagio because her neurologist deemed it ineffective in stopping her disease progression. She went off of the medication and soon found herself barely able to walk, and she could no longer comb her hair or have a shower on her own. She didn't want this happening again. In her own words, she knew that she was declining by not being on medication - but the likelihood of being taken off of another MS medication was high, and she couldn't stand the idea of declining even more rapidly once being taken off of it. She was determined to receive HSCT, and she did so.

Mom is so excited at the idea that if she sees improvement from HSCT she might be able to go back to work one day. She's told me before that if she's doing well in the next few years, she would love to pay it forward and help other people who are fundraising for HSCT. She knows how important this is for MS patients, and she is forever grateful for everyone's help in getting her here.

The other day we were discussing how she really misses her Tim Hortons coffee every day (I know, she talks about Tim Hortons a lot, it's a life-long love of hers). I thought, well it doesn't hurt to try finding it. So I googled "Tim Hortons New Delhi", and was excited to find the address of a Tim Hortons in Delhi. I said "MOM! There's a Tim Hortons in India!" and she said "REALLY?" I double checked the address only to find that the address was in fact, for a Tim Hortons located in Delhi, Ontario (pronounced DELL-hye), not New Delhi, India. She quickly retreated to her state of longing for her favourite coffee. She knew coming here that she would likely be without Tim Hortons, but she's already requested that when my Dad comes to pick us up at the Toronto airport, that he have a coffee in hand for her, haha! I swear if there was a Guinness Book of World Records for the most-consumed Tim Hortons in one lifetime, my parents would win it hands-down. No joke, they typically drink 2-4 Tim Hortons coffees per day, and we are also currently missing out on Roll-Up-The-Rim! Many of the workers who are employed at the various locations in their hometown, Woodstock, Ontario, have my Dad's voice recognized immediately when he orders over the intercom. Only a few more weeks until she can be reunited with her daily large coffee with 2 cream in it.

If you have any questions about Mom's experience here in India, feel free to comment with questions and let us know what you'd like to hear more about, we can answer in the next blog post!

 Pam, Linda, two of the head nurses from Dr. Gaurav's team (I'm so sorry I haven't memorized your names!) Mom (Janet), and myself.

 People watching out the window, lots to see.

 Mom and the physiotherapist working on some length strengthening exercises.

 Receiving her CGSF injection for the day.

A Recap of the Last few Days - Day 14

A lot has happened in the last few days. A lot of mixed emotions, some boredom here and there, and some bouts of homesickness (for myself at least, Mom handles being away from home very well).

We found a way to finally connect the laptop to the TV, luckily I brought an HDMI cable. We've been watching some shows on Netflix and trying to keep occupied. Mom's had her CGSF injections daily, along with some other things to prevent viral or fungal infection.

Mom and I have learned of a new phenomenon - "sitz baths". When we were first told that Mom would need to take these "sitz baths" we thought okay, no problem. Baths are no big deal.

Sitz baths are not what you'd think. It's a small basin, a big bowl rather, that you have to bathe your derrière in. Not fun. But apparently it's to prevent potential infection. 

There was some confusion from the nurses regarding Mom's other autoimmune illness, ulcerative colitis. She took some laxatives not knowing what they were, and ended up very fatigued from the issues it caused her. This was quickly cleared up with the doctor and now everyone is informed of her condition.

In regards to her diet, we've spoken to multiple people about her dietary needs, such as a severe intolerance to dairy (again, from the colitis) and to kidney beans. Alas, at each meal there is a cup of yogurt, some cheese, and a glass of milk.

Mom's been eating a lot of toast to try and recover from the accidental dose of laxatives. We've met with the head dietician and the other staff of Dr. Gaurav, and hopefully this will all be cleared up soon. The food here is good, but it will take some adjusting to suit Mom's dietary requirements while also trying to maintain the neutropenic diet. We realize it isn't easy, so we are trying our best to be patient while she enjoys her multiple pieces of toast. 

Besides all of that, Mom is feeling rather well. 

The internet unexpectedly blocked any social media site including the blog last night, so it's been difficult to get the next post up. It has since been fixed, and hopefully there are no more issues. We are just grateful to have WiFi so we can share all of this with you!

I'm continuing to add things to my list of recommendations and tips for those who come to Artemis later in the year. Another important note I should add, is that I recommend you bring a good quantity of conditioner and body wash. There is shampoo and bars of soap provided here, but if you're picky about your conditioner then be sure to bring some.

I asked Ms. Meenu about whether or not it would be possible to have a table and chair added to our room, as both Mom and I's backs hurt from sitting on a couch/bed all day. It would make doing my school work a lot easier as well, and Mom misses eating at a table. They were able to bring in a nice desk and chair for us, and a nurse was able to ask for a small fridge for our room. With a tiny ice cube tray, Mom can now have some ice cubes in her water, which helps her drink more. If you let the management here know about your concerns, they do their best to try to accommodate you. So far our only issue has been the diet containing too much dairy, but that opinion will likely change when her food comes later today.

A new doctor has joined Dr. Kharya's team. Unfortunately I do not remember his name, however he is very nice and made Mom and I both feel more comfortable because he had a better understanding of her colitis. The more knowledge involved in this operation the better! We are glad he has joined.

A psychologist came to visit Mom to evaluate her mental state and see if there was anything she needed to talk to someone about. She was deemed to be in good mental health, so he will only be coming on a requested basis. A physiotherapist has also visited us and discussed where Mom's issues are, such as balance and walking. She is going to come for half hour visits and work with Mom on strength training so that she can develop better balance.

Mom's test results were returned to us yesterday. It's nice being able to keep them so that in the future we can compare her current state to how she was prior to treatment. It's also interesting to actually SEE the MS, as the lesions on her brain and spine.

There are a few more days of CGSF injections for Mom, to get her stem cell count up. Once they're high enough they can harvest them and begin the chemo to ablate her immune system. See ya MS! (Hopefully. Although Mom is pretty optimistic 😉)

 This is one of her MRI's. You can see the small white patches in the middle of her brain, on the three images in the middle row.

Another MRI showing some lesions as cloudy looking white areas.

Naps, naps, and more naps!

CGSF and Documentaries - Day 11

Today Mom had her injection of CGSF, cell-growth stimulating factor. This stimulates her bone marrow to produce more stem cells and release them into her blood stream. Dr. Kharya explained that typically only 2-3% of a person's blood consists of stem cells, but before they harvest them they try to get them up to around 30% at least.

They give her the CGSF as an injection, in two spots on her stomach. She's feeling pretty good other than some fatigue and a fever here and there. As usual she is monitored very closely to  make sure her fluids are high enough and that her temperature is fine.

We were supposed to be moved into the new BMT ward today, however they need to re-fumigate and make sure the ward is entirely clean before we go in. So it will be another 5-6 days until we are moved. Better safe than sorry. We are happy with our current room anyway, although I have requested a table and chair so that Mom can sit at the table to eat and I can sit to do my homework. It's tough eating on a couch or bed.

We watched a documentary today on Netflix about the Amanda Knox case. Pretty interesting stuff.

Other than resting and trying to stay hydrated, not much happened today. Mom's spirits are up despite the fatigue.

Stem Cell Mobilisation - Day 10

Today Mom started treatment with cyclophosphamide, some mesna (to prevent damage from the chemo on her bladder), and lots of fluids.

She felt pretty tired after the chemo treatment, but otherwise she was relatively well. She had a minor fever, but that is common during HSCT treatment. They check her temperature often and make sure she is taking in, as well as outputting, a lot of fluid.

She didn't have much of an appetite and she received some hot milk with her lunch, which was the final tipping point. After that she made sure the dietician was well aware that she did not want her milk served to her hot. It hasn't been served hot since. When you're in a bed 24/7 and you don't get much of a food choice, hot milk is enough to send you over the edge.

We headed to bed early around 8 PM, and it's a good thing we did because every 20 minutes a nurse had to come in and reset the IV machine she's using. Mom didn't get much sleep because of the interruptions and the light needing to be on, but hopefully tomorrow will be a better night.

Mom has noted how well the nurses here are able to insert an IV. When she was undergoing her MRI testing she noticed how painless the IV was, and again today when she needed one for fluids and chemo. She's had many IV's in her life because of her health problems, so she knows her fair share of those experiences. I should mention that she also has colitis (without a flare-up in 4 years), rheumatoid arthritis, and she has been investigated for lupus several times throughout her life. HSCT has been studied in treating these health conditions as well, so maybe this procedure will also help with those.

I read an article from a medical journal today that discussed the psychological impact of HSCT. I'm aiming to try and better understand how I can be there for my Mom, and what I might expect from her in terms of change in mindset during and after treatment. The article focused on "the psychological impact of the transplant on quality of life including: physical, psychological, social, and spiritual for the patient and caregiver, and to discuss the nurse’s emotional labor of caring and compassion fatigue for such an intense vulnerable population." Mom's first day of treatment proved to be an example of how it effects both her and I. I have to admit, it is tough watching her in her weak moments. She is doing very well right now, but today when she was too exhausted to wash her hair on her own, I could tell she felt slightly disheartened at the reminder that she has lost some of her independence. After everything she has done for me, I'm honored to be there for her. Some of my blog posts may sound a little depressing, but I'm trying to be as honest and truthful about what the patient as well as the attendant go through during treatment. There are no blogs written from the attendant's perspective that I know of, so I hope this will be useful to both groups of people.

This afternoon Lis stopped in for a visit. She brightens the day with her funny jokes.

Tomorrow we are supposed to be moved to the new BMT ward. Overall, things are pretty decent and tomorrow Mom will receive the CGSF (cell-growth stimulating factor) to help her stem cells grow and move into her blood stream for harvesting. She's eating lots of bananas for potassium!