Day + 54

I had my first Rituximab infusion this morning. It  went well with no reactions like I experienced with the first larger dose I received before leaving Mexico. The infusion took about 2 1/2 hours. Next time, it will take about half that time. Since I had no problems with the smaller dose, they can speed up the drip next time. I will need four more infusions to complete my treatment... one every other month. Insurance refused to pay (not a surprise), and the out of pocket cost for the drug is $2,500 per infusion. Genetech, the maker of Rituximab, has a program to supply the medication for free if insurance refuses to pay. We qualified for the program! What an enormous Blessing!

I've been working hard with my exercising, and I walk a little bit with the rollator every day. I also stand on a vibration plate. I'm up to 7 minutes per session now. Before HSCT, my record was 3 minutes on a good day. I'm definitely gaining strength. The most profound improvement is with my bladder, I used to get up 5 to 7 times per night. Now I only get up 1 to 2 times. So I'm getting better quality sleep. And fewer bathrooms trips during the day is nice, too. I no longer need a nap every day... only on days when I'm extra active.

My blood work is back to normal, so I can start getting out and about more. I just need to use common sense and stay away from sick people. I will be cleared to swim after June 13th in our own pool... no public pools for a year. I'm excited to exercise in the pool, because I can work on balance without the fear of falling. I hope to see more improvements in the future. That's all for now.

Thank you again for all the support and prayers that got me to Mexico. Dave and I will be eternally grateful. 

Day + 25

It's been 25 days since my stem cells were transplanted. I've been home from Mexico 2 weeks. I caught a cold, possibly at the airport on our way home, even though I wore my heavy duty mask. I ended up sharing my cold with Dave a couple of days later. I'm finally over the cold and feeling a little stronger. Dave is feeling better too. I was exhausted my first week home. I slept a lot. I have a little more energy now, but I still need naps. I've been doing some exercises every day. I'm a little weaker than I was before going to Mexico. Chemo was hard on my body, and it will take time to recover. I miss seeing the friends we made in Mexico. And I miss hearing British and Mexican accents. We're keeping in touch through phone calls, Facebook messages and we hope to Skype soon too. 

I had an appointment with a hematologist in Effingham today to see about getting my retuximab infusions. I was so happy that he agreed to work with me. I had my first blood draw today, and scheduled another in 2 weeks. He also took care of my Bactrim and Acyclovir prescriptions. I feel very fortunate to be able to do this within 10 miles from home. What a Blessing! 

Day + 10

I have officially completed my HSCT treatment!!! Yay!!! The last couple of days have been rough. I started getting sick with all the signs of a UTI on Tuesday night,,, fever, chills, nausea, couldn't pee. We called the clinic staff to see what meds to start on to get through the night.  Wednesday morning, I was admitted to Hospital Angeles to receive IV antibiotics. It's a beautiful hospital with outstanding care. Having a catheter for the duration of my stay at the hospital gave me a rest from frequent bathroom trips, but insertion was a nightmare. It seems that a bladder sling that I received at the same time I had a hysterectomy altered my anatomy making insertion very difficult. After several attempts, lots of tears and various doctors called in to try, a urologist finally succeeded. I didn't get much sleep that night. because I was pretty sick. A translator provided by the clinic was with us off and on, but for the most part, we communicated through "google translate". Most of the hospital staff spoke little to no English. But everyone was so compassionate. I was released last night about 7 PM. This morning, I slept in till 7:30, because I didn't need to be at the  clinic till 10:00 for my retuximab infusion. I sat in the comfy recliner for 3 hours with only Dave and nurse Paco to keep me company. My daughter, Lindsay, messaged me through the Marco Polo app, showing me our dogs returning home from boarding. When the infusion was completed, and paperwork done, Dave put a pin in the world map showing where all the patients live. It's a fun little ceremony to mark the end of this journey. We are back at the apartment now doing a little bit of packing. We will meet the van at 3 AM to drive to Mexico City. Our flight to Atlanta leaves at 7:55 AM. From there, we arrive in St. Louis at 4:08 PM. I can't wait to be home. This was a phenomenal experience, and I'm so Blessed to have the opportunity to come here for treatment. Thank you to everyone who helped me get here and all who prayed for me and encouraged me through the difficult moments. Love to you all! Adios for now...

Taking a snooze during my infusion.

Day T + 8

Not the news I wanted to hear today... I'm still in neuropenia. Three out of five of our group had counts above 4000, the needed number to be considered "recovered". Karen was at 2000, and I had 2600. The recovered three will have their retuximab infusions tomorrow. It's another filgrastim and blood draw for the American girls. We'll have another hematologist consult to check our numbers in the afternoon. I'm unsure if we get to join the others for our infusions (if we pass) or wait until Thursday. I guess we'll find out tomorrow. I'm a little bummed. Dr. Ruiz assured us that this is not unusual. He said he felt sure we would see the results we want tomorrow. It would be very unusual to stay under 4000 for a longer period of time. We returned to the apartment, and I took a long nap. I woke with a headache, back and leg pain. That's actually a good sign that my body is working hard to produce more cells. I'm sure everything will be resolved before we are due to fly home on Saturday. Four more "sleeps", and we'll be on our way HOME! Adios Amigos...

Day + 7

Yesterday was  shot, blood draw, hematologist consult day. My white cell count continues to go down. Wednesday, it was 1300. Friday, it was 1100. Yesterday, it was 500. The doc says it should start rising by the next blood draw tomorrow. All in our group are feeling tired and weaker. We should bounce back after our counts rise. Once the count gets to a certain level, Filgrastim  shots will end and the rituximaub infusion can be scheduled. That could be as soon as Wednesday. That will be the final medical step in this HSCT journey. Then we will all be released to fly home on Saturday! 

I have been lightly shedding my hair for several days. This morning, I found quite a bit of hair on my pillow. Then after breakfast, a lot fell out when I tugged at it. Dave and I decided it was time for the clippers. He buzzed me with the number 1 guard. I was the last of Group 3 to lose my hair. We all match now. 

Every morning, a man in a pickup truck stops in front of the little gated housing complex across the street. He blows a high pitched horn to signal his arrival. He is delivering fresh milk in metal milk cans! The women come out of the houses to meet him at the truck, and the milkman ladles the milk into their pitchers or buckets. We look forward to watching this scene from our little balcony each day. 

We are planning to meet our group for a visit this afternoon in the apartment courtyard. We are allowed 20 minutes daily in open air, in the shade, wearing our masks. Kind of sounds like prison, huh? Lots of restrictions about food, contact with others, cleanliness... all for the purpose of keeping us safe while we grow our baby immune systems. 

The milkman is here!

This afternoon, we willgo down to the 

Day + 5

Today is another quiet day. I received my daily shot and am enjoying the rest. Dave and I visited with Lorraine and Ian in their apartment earlier. We returned their Marmite. We tried a little bit on toast at breakfast. We are not fans. I am glad we had the opportunity to try it, though. I've always wondered what it was like. Now, I know. "Ewww." We're told, "it's an acquired taste". I would describe the taste as very salty, liquid beef with a syrupy texture. Although the Marmite wasn't enjoyable, our visit with Lorraine and Ian was very much so.

I want to talk about carers now. Dave is a great carer, husband, friend, etc... We muddle through life dealing with this disease as best we can. I am grateful to have him as my partner, and I try very hard to make sure he knows how much I appreciate all he does. This experience here in Mexico has allowed me to see others in our similar situation as an outsider looking in. I've learned that we are extremely Blessed to have carer/partners who truly love us and do their best to make our lives as normal as possible. The carers in our group are all phenomenal! Observing the struggles of these couples makes me even more grateful and appreciative of my Dave. None of us signed up for this. I know of several relationships that didn't survive the stresses that this disease brings. This is serious stuff! In many cases, there is much role reversal. Dave has taken on lots of things I can no longer do. I used to enjoy mowing the lawn wearing earphones, blasting my music while singing along. It was relaxation for me. Now it's become Dave's job... a chore he has to do after a long day at work, or on a weekend when he should be relaxing from his paying job. That's just one example of how life has flipped. We used to garden together... planting, weeding, harvesting. Now, he gardens on his own, plus he's learned how to pressure can all the produce! He does nearly all the cooking, the grocery shopping, vacuuming, etc.. He tolerates the addition of new family members (pets) because he knows how much I love them (he's grown to love them too), even though it adds to his work load. I have observed great love between the partners in our group, but I know they also suffer the horrible inconvenience that disease brings into our lives. It's made me see (by observing the other carers) how Dave also works hard to preserve my dignity in some very undignified situations. When I was diagnosed with MS seventeen years ago, I tried to push Dave away. I gave him every opportunity to run. He was even encouraged by some to run. I knew exactly how tough our future could be, because my sister had already been in a wheelchair for many years suffering from MS. But Dave didn't run. He's stuck by me every step of the way. We're not perfect. We have our cranky moments and can get "ugly" with each other, but we both appreciate that stress takes over if we allow it, and breaks are a necessity. It's helpful that he has a great sense of humor and doesn't allow me to take life too seriously. We also rely heavily on our Faith. It's been wonderful this month for Dave to be able to share with the other carers here in Mexico. They have bonded quickly and have become a support system for each other in a club no one would choose to join... and they'll be life long friends, I'm sure. So I want to take this opportunity to thank Dave for all he does, and to thank God for bringing us together and sustaining us. I love you, Dave! And I salute all the carers who give so much of themselves to make our lives as easy and enjoyable as possible. Thank you!!!

Day + 4

Yesterday was another rest day where nothing was required except for the once now daily shot and always some pills. I had a very restful day... Netflix and naps (and frappes, of course.) This morning, I got another shot plus a blood draw. Group 3 met again this afternoon for our hematologist consult. We are all in neutropenia now. I think all of the girls' counts were lower today. That will probably be the trend through Sunday. Hopefully, counts will be on the rise by Tuesday. We've been assured that this is normal. I am the only one in our group with no hair loss. I could be one of the lucky ones who get to keep their hair. It's early yet. Some don't lose their hair until they return home. 

Dave went for a visit with Mr. Diaz at his shop. I think a couple other carers from our group and a carer from group 2 are meeting too. I'm glad that Dave has made friends here. He's never met a stranger. While he's out, I'll get a nap after I post this entry.
We've tried a few more packets of the dried food the clinic has provided. So far, everything has been quite edible. Dave adds a few enhancements, such as bullion cubes and spices to help it along a bit.  

I've seen some tiny improvements in the last couple of days. Firstly, my legs are not cold to the touch anymore. I never knew they were cold, but Dave assures me that they were. Also, my feet have gone from a purplish tint to normal color. My circulation must be improving. Every day further away from chemo, I feel a little stronger. I was able to get into the van easier today. I'm doing more exercising in the apartment too. By the time we come home March 25th, I hope to be as strong or stronger even than when we arrived. I've been told to expect a roller coaster ride in terms of my recovery. It could take many months to see big improvements. The most important thing is that progression is stopped, but I intend to do everything in my power to give this body a chance for some recovery and reversal... a healthy diet, lots of exercise, positive attitude, and Prayer. 
Nap time! Adios...

This is our bucket of dried survival food and a jar of Marmite that our UK friends, Lorraine and Ian sent over for us to try. We'll spread some on a cracker, and report what we think about it. We're told we'll either love it or hate it.