Three years ago, I flew home after HSCT at Pirogov Hospital in Moscow with high hopes and dreams. I still have high hopes and dreams but they are more realistic now. The struggle continues and I’m still fighting Primary Progressive Multiple Sclerosis. PPMS is an unrelenting bully, but I’m not giving up. I still experience overwhelming fatigue and I can’t walk very far without my legs giving out. My left hand is limp and mostly useless. I can’t help with household tasks unless my mind or organizational skills are needed. I joke that my mind is the only thing I have left, but it’s pretty much true. Life is so difficult, so extremely difficult. But, I’m still able to walk short distances, feed, bathe and dress myself. I don’t take anything for granted anymore. These could be the good old days I look back on. It’s hard to imagine, but it’s a reality I have to accept. I have dear friends who have continued to progress post HSCT and progression is sneaky and unrelenting. If and when I reach the next step in the progression of my disease, I’ll know I’ve done everything in my power to stop it. Right now, the worst thing that I can experience is stress. I do my best to stay calm & positive, and I don’t let small things bother me. However, stressful situations are sometimes forced upon us. My body reacts strongly and my walking deteriorates even further. My legs turn to jelly and won’t hold me up. I’ve always only wanted peace and hated conflict. Now I have a physical reason for wanting everyone around me to try their best to get along.
I had my last of 4 Rituximab infusions in February. It can take up to a year to know if my progression has stopped once again. Right now, I think it has stopped. I joined the HSCT Non-Responders Support group after my HSCT was initially successful, and then my disease started to progress. I’m hopeful that the combination of the extra Rituximab infusions and superior guidance from The MS Gym will be enough to stop my PPMS from progressing. Time will tell. The Non-Responders group is extremely supportive, but it is a sad group to need to join. It’s a group of people who have not responded to HSCT or have had their autoimmune disease progress after initially responding well to treatment. 20-25% of people treated with HSCT will benefit for a few years, before their disease begins to progress again. Some receive no initial benefit at all. Our group is eclectic and small. So far there are only 34 of us.
Somehow this summer, my right leg has been clearing stairs often and I can move my toes on both feet! It’s still surprising to me, but it has been fairly consistent. I’m not sure why. I exercise daily and I’m trying to correct both muscle imbalances and weakness. A friend told me about The MS Gym on Facebook. Trevor Wicken started The MS gym a few months ago and I joined when there were less than 300 members. Now it has over 3500 members! He is a talented and caring trainer from Denver, Colorado who has a lot of experience helping MS patients with various levels of disability, including those in wheelchairs. Trevor and his wife, Misty, are both extremely supportive and motivational. They’re filling a big void in the MS community. MS patients all over the world now have access to a knowledgeable trainer. If you know anyone with MS, please tell them to check out The MS Gym!
I made significant progress with my physical therapists when I was in Maryland. I practiced my balance and worked on improving my gait under their careful supervision. Much to my amazement, I successfully balanced and did mini squats on a Bosu. I moved from a cane to two trekking poles to help improve my thoracic rotation. I got to try an anti gravity treadmill a few times too.
I am back at the beach in Delaware this summer. For a few years, I’ve been saying this year could be my last. I’m looking into installing additional handrails, grab bars and maybe an elevator or a lift. I still use a beach wheelchair and push it to the beach. I also tried something new this year – trekking poles on the sand. Trekking poles on their own don’t have enough surface area for me. I had my son modify them by adding a piece of foam noodle to the tips. Success! It’s still very challenging, but it’s a good challenge.
modified trekking poles
Charlie was watching me :- )
Walking is more difficult as the sand gets softer.
It takes a lot of energy and concentration. BGB (butts, guts & blades) – The MS Gym
I purchased a beach wheelchair off of eBay last summer. I push it to the beach and back.
I practice walking with my trekking poles on the sand and exercise in an outdoor pool. My friends and neighbors at the beach are wonderfully supportive. I truly hope I can keep coming back to enjoy the ocean breeze and these special friendships.
I’m extremely grateful for my husband and son who help take care of me on a daily basis. God only knows where I’d be without them! Charlie, our sweet rescue pup, continues to delight us. Although he’s pretty much given up skateboarding, he’s learned to fetch and play with a ball! He’s the best therapy dog ever! I’m forever grateful to Dr. Denis Fedorenko, Anastasia Panchenko, & all the staff at Pirogov Hospital in Moscow for HSCT and for giving me hope. Unfortunately, HSCT is still not available in the US. Knowing what I know now, I would definitely do it again!
July 4th, 2014, I was getting preparing to go into isolation at Pirogov. July 4th this year, was spent celebrating with family, friends, neighbors & Charlie at the beach!
Today I was able to celebrate the 95th birthday of my next door neighbor, Muzzy!!! Last week, my great nephew, Arlo James, was born and I’m so excited to meet the little fellow! Congrats to his proud mamas, Annie & Hilary!!! I’m looking forward to more celebrations of life this year.
My last post was almost a year ago. It’s a whole lot easier to post positive, upbeat blog posts. It’s been a rough year, and I’ve done a lot of questioning throughout. Did HSCT halt my progression? Would additional treatments help?
When I started researching HSCT for PPMS, I connected with as many other PPMSers who had undergone HSCT as I could, but there were not many others who had gone before me. I was only the 45th international (non-Russian) patient treated in Moscow. At that time, only Moscow and Tel Aviv would treat primary progressive patients. The results for the PPMS patients were mixed, and it was still early in many of their recoveries. I made the decision to pursue HSCT and told my family and friends about my decision. I was thrilled that there was something I could finally do to try to alter the course of my disease.
Roughly two years later, PPMS patients can now be treated in Russia, Israel, Mexico and the Philippines. Russia has treated 255 international patients! The most exciting news is that there is also a PPMS patient currently being treated at Northwestern in Chicago, by Dr. Burt. I’m hoping she’s the first of many! Dr. Burt’s Phase III clinical trial, the final stage, will be competed this year. There will be a 5 year required patient follow up, ~1 year to write and publish a report for peer review, ~1 year to write an FDA submission, ~1 year of committee review. Hopefully by 2022 the FDA will finally recognize HSCT as an option for MS patients in the USA!
My first year post-HSCT was a practice in patience and I learned to expect the unexpected.
I had hope for a stable future, an end to my progression, and an increase in the quality of my life.
My second year was more difficult and I started to question if my progression had really been halted. I struggled with balance, walking, strength and overwhelming fatigue once again. Dr. Fedorenko sent out a post HSCT questionnaire in January 2016 which helped me clarify my concerns. In February 2016, I made the decision with Dr. Fedorenko’s help to pursue additional “booster” treatments to halt my progression.
The additional treatments to stop the progression are Rituximab infusions. Rituximab is a monoclonal antibody drug that is used to treat diseases with overactive or dysfunctional immune B-cells. It binds to the protein CD20 on the surface of B-cells, which helps other cells locate and eliminate the overactive B-cells. Rituximab was part of my initial treatment in Moscow. It’s not a big deal to get extra Rituximab infusions. However, it IS a big deal to convince insurance to pay for it. There are some insurance companies that will pay for it, but the process often involves a great deal of effort by the patient and their doctors.
I had my first “booster” Rituximab infusion last Thursday. Everything went well and I will have three more that will complete my HSCT consolidation therapy. I’m still hoping to definitively stop the progression of my disease.
I’ve been working with a new physical therapist for the past 3 months. As a neurological PT, she’s been able to explain to me a great deal about balance and gait that I never understood. She’s had me focus on exercises that all have practical applications for my movement. I had a little epiphany when I noticed that the way I was shifting my weight for a balance exercise mimicked the motion of a “normal” gait. She has me practicing walking with a Lite Gait, on a rubber mat with a cane, and around obstacles. I’ve learned how to safely use a cane for short distances and stairs. Yesterday, I walked 300 feet (less than 100 meters)with my cane! She also took the time to give me an exercise plan that breaks down what I should do each day. In the past, I’ve always felt frustrated that I was unable to complete all of the exercises that I thought I needed to accomplish daily. Now, I have a manageable plan.
PPMS is a horrible progressive disease can easily rob us of our dignity. My family members that live with me help me with daily activities, take care of 100’s of daily tasks that seem insignificant individually but add up to an enormous amount of time & effort and are my lifeline. I feel fortunate that my son, Adam, and my husband, Fred, are still available to help me. I continue to need their daily assistance.
I’ll be heading back to the beach soon. Every year, I wonder if it will be my last – if I’ll be able to continue using stairs and walking the 50 steps to the beach walkway. For those of you who have followed my HSCT journey, it’s important for me to reiterate that I have no regrets. I was incredibly fortunate to have received this treatment from the kind and devoted people working in Moscow’s Pirogov Hospital. I’m so grateful to have the support of other post-HSCTers around the world. We are a small group of individuals, but our numbers are growing.
I recently met a man with PPMS. He’s the only PPMSer I’ve met outside of Moscow – and he lives 15 minutes from my house! I hitched a ride with him and his lovely wife to my first informal MS gathering – a La Casa Internationale Del Pancakes.
Charlie is so smart and full of love. We are all grateful that this sweet pup is part of our family.
Charlie is so smart and full of love. We are all grateful that this sweet pup is part of our family.
Summer is here! The weather is warm but life is still extremely challenging. I’m finally at the beach and so happy to be back! I stayed in Maryland longer than usual to successfully finish off my physical therapy. My physical therapists were impressed with my progress. We’ve been working a lot on my brain-core connection. I’m improving much slower than I would like, but I am definitely stronger than I was before. I’m often asked if the treatment was successful. I believe my progression has stopped, which is the goal of HSCT. So, yes! It was successful; but unfortunately I started out with a high level of disability. That has not changed. I continue to struggle with my mobility, but my core is stronger and finally connecting with my brain! My therapists tell me my balance and dorsiflexion have improved and my movements are much more fluid. I have to continue exercising daily or one of my body parts feels left out. It’s a constant battle to do enough, but not too much. Too much knocks me out for a few days to a whole week. I’ve stopped pushing myself to exhaustion and I’m planning on starting poolates or my version of pilates in water.
New Life Birthday card from my sister!
Today is the one year anniversary of my New Life Birthday in Moscow! I’m so glad I was able to have HSCT when I did. The waiting lists continue to grow as more people with autoimmune diseases from all over the world learn about it. There is a facility that has recently opened its doors to international patients. It’s in Puebla, Mexico. They’ve been treating patients for over 10 years, but the first group of international patients have recently come back home to their families! Moscow, Tel Aviv and Puebla all treat progressive MS patients. There are many more places that treat relapsing remitting multiple sclerosis. It’s really wonderful that PPMSers have more options available to them :- )
I wish I’d made more progress by now, but I’m glad that I’m not worse than I was a year ago. I still have time for further recovery. I’m expecting more improvements during the next two years with continued physical therapy, exercise, good food and good mood!
Sweet little Charlie has been a member of our family for 6 months and continues to be a devoted pup. He’s come a long way from his early days and has stopped barking at every household noise. He’s always by my side and is a very good listener. He enjoys beach life, and many of the pups he encounters every day.
Charlie gets a kiss from his favorite snowball guy!
Shopping at Home Depot
Dancing for treats :- )
Happy New Year to all!
Yes, I know 2015 is well under way, but I’m still slow at most everything I do. However, I’m still moving forward. I got sick for the first time since HSCT. I had the flu a few weeks ago and have recovered from the illness, but my recovery from HSCT took a sharp nosedive. Although I know this kind of setback is not unusual after an illness, it is still very discouraging. So many others have gotten sick, been hospitalized, fallen or had other setbacks after HSCT – I’ve considered myself very lucky. I also had not fallen since April, and was pretty damn proud of that too. I fell while I was sick, but it wasn’t a “bad” fall. I’m lucky I did not get hurt. Collapsing in a heap on the floor is much easier on the body than taking the full brunt of a fall. My strength, ability to walk unassisted and my balance suddenly disappeared. I had no idea how long it would take to start regaining some of what I had lost. So many fears crossed my mind. What if I haven’t been doing enough? What if I’ve been doing too much? What if my old symptoms improve, but I get new symptoms? My mind was going all over the place with ‘what ifs.’ These thoughts are also not unusual for any post HSCT patients. I just try to keep reminding myself – Full recovery can take up to two years!
It’s been an incredibly rough week, but a few days ago I started to feel a bit stronger. I took a 10 minute walk in the snow in our backyard. I had an arm to hold onto the whole time and I lifted my legs as high as I could. It felt wonderful and exhilarating – until it didn’t. I have terrible, old snow boots and those boots were not made for walking. I still had a good feeling about pushing myself a bit and tonight I was able to walk on my own again! I’m slowly getting back what I lost. Thank you Sari and Adam for your unending support and encouragement!
I’m expecting to be back on track gaining strength, increasing my mobility, balance and working hard with my dedicated physical therapists and occupational therapist. Thank you to all the love and inspiration from our large and always growing post HSCT family.
Soon we will be visiting my sister, Marian, and my brother-in-law, Robert, in the Poconos. I’m excited to see them and have them see how I’ve progressed. We were supposed to go visit a few weeks ago, but that’s when I got sick. They both accompanied me to Moscow and stayed a few days while I underwent the testing and was accepted for HSCT treatment by Dr. Fedorenko. They were really happy to have met Dr. Fedorenko, Anastasia and the other patients. Then they flew home and went back to their family and jobs. They returned to Moscow a few days before my departure to help me safely get back home. I’ve only seen them once since then, and that was that their daughters wedding.
Yesterday, I had an MRI of my brain, cervical and thoracic spine with and without gadolinium. I was delighted to hear that I have no new lesions and my previous lesions had not changed at all. My MRI was compared to the MRI I had in Moscow and the last MRI I had before Moscow. I will share the report from my radiologist with Dr. Fedorenko as soon as I get a copy!
Other exciting news is our adoption of Charlie. We got him the end of December. He’d been found running on a highway in October and had been ‘on his own’ for a long time.
He was brought to our local animal control, cleaned up and groomed. He stayed with the family who found him for 4 months and they brought him back. We read about him and went to animal control to see him. We arrived just as he was leaving in the arms of one of the volunteers. He was so frightened, he was shaking. We met him the following day and decided we wanted to adopt him. We visited him again with our other rescue pups, Lucy and Desi. Desi likes everyone, but Lucy is definitely picky about who she likes. Charlie growled at both of them while wagging his tail. Lucy and Desi both liked him anyway. He’s been with us for almost two months and he is so sweet and smart. He’s gotten over a lot of his fears. We’ve been training him and he’s doing really well. He still growls at Lucy and Desi, but it’s definitely less. He loves to run in the backyard with Desi! This is Charlie now.
Learning to shake!
His first trip shopping.
Charlie’s first photo shoot!
We all adore him and are forever grateful to everyone who has helped Charlie along the way.
I’ve been home from Moscow for four weeks. Although I’m not overflowing with energy, I haven’t had severe fatigue. I’ve been told that approximately one month after coming home the steroids would totally be out of my body. I should expect to be really exhausted and may not may not be able to make it out of bed for a few days. I keep waiting but it hasn’t happened yet. Mornings are harder for me, but once I’ve been up for a while and stretch, I’m able to move better.
I’m also prepared to expect a roller coaster ride for my recovery. My old MS symptoms can leave and come back again. It is unpredictable, and there’s nothing that I can do to change this. I need to make sure I get plenty of rest and stay as stress-free as possible. It is definitely easier said than done, but I’m doing my best. So far, I’ve been less fatigued and I’m walking better (not good, but better) than before the treatment. But the spasticity (tight, tight muscles) is back in my calves, and stretching doesn’t have an effect on it.
Since my immune system is still not very strong, my whole family is taking infection control very seriously. We have a bottle of Purell at the bottom of the entrance stairs and at the top of the stairs. Everyone who comes uses it. I wash my hands frequently, carry hand sanitizer with me everywhere I go and wipe down the kitchen counters with Clorox wipes often.
The biggest change involves my husband. Fred loves fruit. He especially loves serving it to other people. He is famous for bringing a huge bowl of cut up watermelon, no rind, to the beach and serving his family, friends, renters and people he’s not yet met his delicious watermelon. At home, he also likes to serve fruit in very large bowls. In the past, he encouraged everyone to use their fingers or toothpicks to get the fruit. He’s been serving fruit like this for many years. This year, he’s using smaller bowls and serving the fruit with plates and forks. I explained that I need to be very careful right now with everything I eat and touch.
This weekend, I saw Lucy and Desi (and Dana & Greg) for the first time since I left for Moscow! I was careful after touching the pups too : )
I’ve not gone out to eat at a restaurant since returning home. We typically don’t go out often.
When my friends Harriet and Joan visited, we had take out from Matts Fish Camp. It’s a wonderful restaurant in my neighborhood! I only wear a mask when I go out to a public place. Although I’m allowed to go out to eat at a restaurant, I can’t imagine wearing a mask and lifting it up to take bites of food. Continuing to enjoy Fred’s delicious home-cooked meals is my preference. I’ve also eaten at friends homes a few times and that was wonderful!
A few Sundays ago, my neighbors had a special surprise event at the beach for me. It had been raining for a few days and this was a beautiful clear night. There were 100 luminaries that were lit and sent up into the sky. It was a huge gathering of love and support with friends from my neighborhood. It was a magical night and everyone who was there loved it.
I want to thank everyone again who planned, contributed and came out to enjoy the evening with me, my family and friends!
Miles, one of my neighbors took most of these photos that captured the spirit of the evening.
It’s still mind boggling that the cost for the Stage 3 HSCT clinical trial at Northwestern is well over 3 times the cost of HSCT in Moscow. While I was not eligible for Northwestern’s clinical trial, I’m still glad that many people do qualify and are able to get treated in the US.
We are still fundraising to pay for the cost of my HSCT in Moscow. I’m trying to stay positive even though we have not reached our goal yet. I am grateful for all the contributions I’ve received so far. Thank you all for your support and prayers.
I’ve been on a plethora of medicines since I’ve been in Moscow. I’ve had no problems with any of the medicine or testing…except the MRI bothered my lumbar spine and was easily remedied with 800 mg advil and an ice pack.
There was no problem with the neupogen shots, steroid drip, chemo, or chemo rinse. Constantly using the bathroom was an inconvenience and disturbed my sleep, but it was insignificant in the big picture.
I’ve been taking:
Flucouazole 200mg/day which is an anti fungal
Ciprofloxacin 1000 mg/day which a broad spectrum anti bacterial Bactrim 960/mg/day 3x/week which is synthetic antibacterial (used in the treatment of various bacterial infections)
I eat extremely healthy all day, but at night due to the steroids, I snack like I have not eaten for days! I talk to myself occasionally (often : ) and still try to fundraise and help my family from afar. I’ve had mostly good days. There was one night that I was not able to sleep well at all, which is very unusual for me. I finally fell asleep at 5 am, and was gently woken by nurses at 8:30 am for my morning testing. I am always able to get back to sleep for a few hours if I need more rest. But, I was awake for the day! It was a miserable day for me. But, it’s only happened once. I typically don’t take naps, but I expect that will change upon my return home to begin my recuperation. I’ve been fortunate that the whole procedure has not been as difficult as it has been for others. I’m still expecting a longer, more arduous recovery than most because of PPMS and my level of disability upon my arrival in Moscow. I’ve written down every inspirational message from friends, family acquaintances and strangers. The one that I think about most is Go! Fight! Win! This just sums up my plans perfectly. There is nothing more important that can be done by me to improve of the quality of my life and that of my family than to restore my daily independent functioning and to gain strength.
Today, July 12, 2014, when Dr. Fedorenko came in for his daily visit he had some delightfully surprising good news. After less than a full week in isolation, my bloodwork showed promising results. Although, all our medical information is in our official chart which we’ll be given a translated copy before discharge, Dr. Fedorenko always brings in a hand written copy for us to discuss.
July 12, 2014 – Hemoglobin 83, Leukocytes 2.4, Platlets 199
I was exercising when he came in. Hairnet is to control ALL the strays hair that are finally coming out! Always try to take photos by my daughter’s fish art!
So, the good news was, I was no longer in isolation! I could leave my room wearing a mask, take a walk down the hall, even visit friends on the 2nd floor : ) I did not want to go outside my first day, having fallen out of my bed the night before. I did not get hurt, just bruised a bit. Was trying to retrieve a paper that I dropped. Still dropping many things : (
Since the door with the ramp is closed on weekends and after 5, I did not want to take the risk of the stairs by myself just yet. But was so delighted to see some friends I’d not seen for a week and meet some new patient arrivals!!!!!! BEST. DAY. EVER. maybe?
I can not stress enough how much Dr. Fedorenko cares for all his patients. He is a brilliant, caring, warm, thoughtful, loving man and hematologist who should be cloned as soon as possible. There is no personal, medical or procedural question that I have ever asked that has not been explained fully and at length to me. He had initially asked me to write down any questions I had for him. He did not care if they were not well worded, small or inconsequential or extremely important to me. He answered questions that I was just curious about as well. He always took the time to make sure I understood what I was trying to ask. My handwriting unfortunately has gotten extremely poor during the last few months due to PPMS. I was writing down my questions, had trouble reading my own handwriting and my responses from Dr. Fedorenko. Light bulb finally went off and I started typing all my questions with the date above it for him. He lets me take the time to type his answers. I can read them now : ) He answers questions from me and from my family. He is a gem. It’s also really easy to make him laugh which delights me. With not much of a body that functions well, my sense of humor and being able to make people smile is pretty much all I have going for me….FOR NOW!
Still furiously fundraising, but ready to go home in ONE WEEK….
GO! FIGHT! WIN!
Thank you, Anne! I think about you every day and how much you always inspire me. I can’t wait to see you!
Thank you EVERYONE for your donations and support. There is no way we could have done this on our own! Hugs and love to all of you ❤
*** not edited, just written***
I had an interesting bunch of days here in Moscow. So absolutely delighted to meet everyone from all over the world who are here to improve the quality of their lives. I’ve never met anyone with Primary Progressive Multiple Sclerosis in person EVER. There are 4 of us here. One I have actually not met. I was already in isolation when he arrived; New friends from Australia, New Zealand, Norway, Canada, and the US is represented by MD/DE me : ), Indiana, Georgia, Texas and Montana. All different stories and backgrounds to learn about which is so interesting for me, who does not get ‘out’ much at home. We have a variety of different autoimmune diseases, one patient did find out she had a 2nd autoimmune disease until after complete testing. We are a variety of ages, maybe 34 to 64 years old, many varieties of disabilities and pain levels that we all started out with and have had for various lengths of time. 100% of us know that this is where we need to be to improve the quality of our lives. Many more able bodied patients have been able to go sightseeing as they go through their testing and ever afterwards for a bit. Unfortunately, my rollator and I have only gone outside on the hospital grounds to seek some sunshine. Once, a dear friend, Ali rolled me all over the hospital grounds in one of the hospital wheelchairs. I am grateful for that experience!!!
I can’t stress enough that all I’ve read and learned about HSCT through the various facebook groups, phone conversations with previous patients and Dr. Fedorenko have been invaluable. There is a support system in place in case anyone who had HSCT anywhere in the world can reach out and ask questions. Dr. Fedorenko is also available by phone or email. Anastasia, his liaison is the best person for the job. She gives so much extra time to also works tirelessly to ensure everyone is well cared for on all levels.
There is a language barrier for sure and I’ve been learning more Russian daily, Recently, if there has been anything that’s not extremely simple to communicate, I’ve used google translate.
Anastasia and all the nurses can contact Dr. Fedorenko at any time day or night. He also comes in on the weekends to check on all his patients. Anastasia goes to the airport with a driver on any day a new patient arrives, so she can greet them personally. She does this on the weekends too!!!
Any fears or concerns that family or friends brought to my attention were not warranted at all. I know everyone had my best intentions at heart, but it did cause me unnecessary stress. I wanted to arrive as strong as possible, but instead my stress level caused my disability to further decline. I did extensive research, I was not ‘catfished’ or scammed in any way. I’m not the smartest person in the world. But as a retired/disabled dentist, I was perfectly capable of making an informed decision.
I’ve been extremely fortunate during my treatment. Besides some intense lumbar problems that were extremely painful during my MRI testing, I had absolutely no problems. I ‘d done so well with all the other testing, I asked if he MRI could be done the same day. No idea if I would have had the same problem the following day. For anyone not familiar with lengthy MRI’s, you are placed on your back, call button in hand and mechanically rolled into a long machine. Some are open, some are closed. This one was closed. It can be noisy and I was given headphones. You still hear strange noises, but the sound is diminished. So, I needed a brain, cervical and thoracic MRI. Midway through the procedure, ALL my extremities got numb, burning and uncomfortable. But, I wasn’t done yet. I was rolled out and given a routine injection of gadolinium to check for enhancements and rolled back in for the second half of the MRI. I just kept breathing in and out and knew I was halfway done. I finished the MRI and was glad I did not press the button for the tech to stop. I was in miserable pain and got freezing cold. After being wheeled back to my room, I was really glad Marian, my sister and Robert, my brother-in-law were there. They asked for an extra blanket. Dr. Fedorenko was called and he agreed I could take my own 800 mg ibuprofen (advil) and an ice pack for my lower back was delivered quickly. I fell asleep and was better in a few hours.
That was my total discomfort during the entire chemo/HSCT procedure. So many people experience more severe side effects that can be painful and exhausting. From what I heard, the sooner you ring the nurse that you are in any kind of distress, it will be handled ASAP. I know everyone will not fair as well as I did during treatment. I WISH my lack of difficulties would mean my recovery will go smoothly. I know for a fact that there will be extreme fatigue, ups and downs with symptoms and patience, good food, good mood and family support are essential. If/when I have a terrible day, week, month etc, it’s all part of the roller coaster recovery that I’ve learned is normal and appropriate. I will, in time, have more good days than bad days and that is my goal. Please be as patient as I will be and be as encouraging as possible! I have real hope….not to be an able bodied person, but to be able to finally strengthen muscles that will actually respond to hard work and dedication : )
I know this is not my typical blog. It’s too wordy and not enough of the photos that I love to add!
Here goes some of the highlights before my isolation started.
I know this must not look too exciting to most of you, but I eat extremely healthy at home. This was a tasty, flatbread/cracker from Gro Larson. Full of fiber and love and she gave me more before I entered isolation.
I don’t even remember what it’s called. Thank you, Gro!!! She also brought yummy treats for all of us : )
This was taken on Friday July 4th, but after 5pm. After 5, the easy door with the ramps is locked. There is a convenient alternate exit, but there are a few stairs. There is a railing which helps. I’ve done this with Marian and Robert and after they left with other people nearby in case I needed help. This was the first time, I was alone and I felt ready. I love my lightweight Euro Rollator, made by Drive Medical and comes with a basket for water, sunglasses, light jacket in case the sun goes down etc. The small pouch was added on right before I left for lipgloss, tissues, reading glasses. It’s perfect for little essentials.
Anyway, I locked both wheels and easily manage both myself and the rollator easily. This time I was meeting Brendan who had been out with his dad. The hardest part for me is pushing open the heavy door.
I met Brendan outside. He found a lovely sunny spot and we got to chat about our lives for a long time while we enjoyed the gardens, statues and beautiful sunshine. And of course a selfie. Brendan’s hands are much more stable than mine! I always appreciate his company, his insight and his wisdom too!!!