Wow! Not at all what I was expecting. I had a wonderful day first day OUT after being inside for one week. I enjoyed the sunshine, letters from home, talking to friends face-to-face and once again being outside. I was surprised that I needed help getting up the four stairs, when it had not at all been difficult in the past. I just figured it was just one of those things. From now on I will only go outside before 5 o’clock during the week when the door with the ramp remains open. Carol and Ellie had volunteered to take me all the way to my room but it wasn’t necessary once I was on flat ground. I decided to visit Sheila, my New Life Birthday buddy and her wonderfully supportive husband, Dan because she was now out of isolation as well. I was planning on visiting for about 10 minutes. Sheila was watching a movie, and Dan was ready for a nap. Well, my jelly legs did not cooperate and I stayed chatting with them for over an hour until legs were ready to walk the TWO doors down while still using my rollator.
The next morning, Sunday, July 14th, I had a visit from both Anastasia and Dr. Fedorenko. They both stressed the importance for me to REST, REST AND GET MORE REST. I stayed in bed the entire day and only got up for meals. I also realized that I had not been getting as much sleep as all the other patients. I stay up too late thanking people for their donators, support, prayers and love. I am also continuously fundraising to help meet my goal.
One of my first official sponsors was Erin Cassell, of Roll Up’Dye. She so generously volunteered 200 shirts, her skills her dyes and her time. I’ve been searching unsucessfully for a venue, inside or outside and 200 adults/kids willing to participate for over 4 month. I could be a camp, a church, boy scouts or girl scouts, a swim club a family reunion. Any possible gathering of people who enjoy tie dye!
The event can be indoors, outdoors, hosted in a back yard, etc. The variables are endless! If the shirts will sell for $18 each, my fundraising goal would be closer to my goal : ) Please help me find a group who might enjoy tie dyeing!
So, I will follow Dr. Fedorenko’s orders, sleep more, delegate more and get tons more rest. My body has gone through a lot and now I need to help it recover. No more late nights and I’ll even try to take naps
Time to solely concentrate on myself. My latest thought was that everyone who knows me, used to know me or wants to help fundraise can ask their friends for a small donation – $5/$10/$15 if it’s a good day. If they have already donated, they are just the collectors I take a much needed rest from fundraising and who knows – it could actually work. A small amount can add up and help me with the remaining treatment costs. However, this is not for anyone who has previously donated any amount in the past. Just please encourage your friends and family to make extremely modest donations if they can. What do you think? It could help a lot!
***Already received a donation from my sister’s friend, Karen, from Sacramento! It works : )
So, these are my thoughts for today:
Take care of Nancy. I did not know I had done too much. But that was fatigue like I’ve never experienced before and I will certainly take notice of what I do every day and how my body feels later and the following day. I’ve been advised that this level of fatigue will be normal for the first 3 months after coming home. Good to have an idea about what to expect!!!
This is a breakfast that made me so happy when I was in isolation. Oatmeal, coffee, yogurt and thinly sliced apples made very soft in the microwave. Today, I made tuna with cumin, turmeric and yogurt and that was so tasty too! The food is healthy and excellent here, but a little homemade variety is fun too!
One more is an older photo of Dr. Denis Fedorenko. Some how, I love this one of him : )
Last shout out of the day is today is Stevie and Carol’s 25th Anniversary! Stevie was so sweet to loan me his ‘new’ macbook charger. It was compatible with my 2008 macbook and mine decided to quit working last night! Thank you again, Stevie!
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 ❤
Dr. Fedorenko visits patients every day, even on the weekends. I explained what happened the day before and how I really needed just an hour of sunshine. He agreed it would be a good idea, but that I must wear a mask until I returned to my room. I was so happy. I masked up and entered the elevator to go down to the first floor. My first elevator selfie, wearing my mask, of course!
I was going to meet Brendan, but the timing did not work out well. Had to take my favorite stairs, because the ramp door is closed on the weekends. I was still going to be thrilled just to sit outside by myself for a bit of sunshine! Much to my delight, Nebahat and her husband Ali, Hatice’s family was just arriving for their visit.
We all enjoy spending time together and they did not mind having Hatice wait a little bit more to see them. I had a feeling that Hatice would be ok with it too.
I had been so excited that I was allowed outside, I left my room quickly. I was wearing my same clothing as the day before. Everything needed a solid washing, but I did not care. I did not even attempt a scarf to cover the catheter tubing. I was outside!!!!! We took a few more photos to remember my last day outside for a long time!
Then Wayne showed up. We had not yet met. But, I had met his wife, Misha a few times. She was staying on the second floor, in a hopefully spacious room ( have not actually seen it), whose window opens for fresh air!!! By the way, I did not remove my mask for the photos….not so vain. One of the earpieces popped off.
Also, not a vanity photo of me, but a lovely smile on Nebahat. Just an up close look at my hanging, jugular catheter with some lovely tape : )
Sunshine allotment time almost complete, Ali and Nebahat went inside too to visit Hadice. I decided I still had time to stop off on the second floor to have my last face to face visit with Brendan. I did grab a new mask, so we were not actually face to face : ) His dad, Bob was visiting too. So, I had double the fun!
We took the time to share some photos. His from his laptop and my two photo albums that my daughter, Dana had assembled. This lovely sign was in the elevator!
I arrived back on the 3rd floor ready for my isolation, I took some photos of how ISOLATION doors look. They have a bright green notice on them for no entry without full coverage from head to toe.
Got to see Gro one last time before isolation : )
My isolation period started Saturday, July 5th. It was two days after I received my stem cells back. It’s been fine. Daily intensive cleaning – Linens changed, room cleaned from walls to floor and I have cleaning routine for my entire body and get help to accomplish it and get dressed.
*** 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!!!
Not sure what day 3 of Chemo will bring, but the bathroom is my constant companion. Urinary urgency has whole new meaning. We’re all looking a bit weary. And those with family members don’t have much down time and still find the time to check in on me! It was a rough day for me. Not enough sleep and playing the role of a “Betsy Wetsy”, a childhood toy that would drink liquids and instantly pee.
Thoughts for the day: I was 100% sure that I was ready and convinced to commit to going to Moscow and receiving HSCT under the expert supervision of Dr. Fedorenko and was accepted for treatment on February 2, 2014. I had to spend many extra hours convincing some of my friends and family members that it was in my best interest to seek HSCT in Moscow. Just because there was nothing else offered to me in the United States, this was not a decision I jumped into lightly. I was sent numerous articles disclaiming the data that HSCT would be beneficial for PPMS. The most useful came from a friend in Australia who highlighted the important points for me to view. Thank you, Murray!!! That saved me hours and hours. I had already looked into every clinical trial in the US for PPMS. I felt that my research should have been enough. No one really understands how extremely difficult daily life is for me and for my family. Simple things take me at least 4 – 5 times as long as a healthy person. I trip, I fall, I bruise and I stopped counting how many things I drop every day. I am fortunate that I can still feed myself, shower and get dressed by myself, but these were luxuries soon to be taken from me by MS. I was so grateful that Dr. Fedorenko saved my date of arrival for me while I was attempting to elicit the support of family and friends. He is a firm believer that family support, good food, good mood and therapy will help with recovery. When I finally realized that I would never get the support, fundraising or daily living support that I was looking for from a few of my loved ones, I made my leap of faith that I would do the best with the little support that I had and booked my flights almost two months later than when I was ready. I was really hoping to get more fundraising help and that continues to be a challenge for me. Strangers, acquaintances, friends and family all donated numerous times. I was naively confident that I would be able to raise the money I needed before I left for Moscow.
As difficult as the treatment is here, every day life at home was dismal and I had very little help with daily tasks. I don’t know how I would have made it here without Adam’s help. He spoke to Dr. Fedorenko, George Goss, Brooke Slick, and helped me set up this blog and is continuing to fundraise with good friends from Bethany!
Thank you so much for helping him Kristen! Adam is doing all he can to try to stop me from worrying. The hospital has been very patient and knows I’m trying my best to raise funds to pay my bill. Everyone encourages me to stop fundraising and get more rest. Current patients undergoing treatment, former patients and future patients have made donations.
Everyone who is considering HSCT – do your research. Decide what is best for you and get on a list ASAP. Please don’t wait for support that may never come. It’s hurtful to be constantly be defending our decision, especially when time is not on our side and our disease keeps progressing. Gather your true friends and family who believe in you and would do anything for you, like you would do for them if the situation was reversed.
This whole process of research and fundraising took a great toll on my strength and daily exercise routine. Sitting and responding to numerous emails was detrimental to my health, stamina and endurance. Within a few short months, I progressed from walking wobbly to needing a rollator for most of the day. I know my recovery will be much more difficult with my current level of disability. I am ready for the work it will take to regain some quality of life that I have been missing for so long.
My world was small and getting smaller. I can’t do what I used to do. I really don’t ask for help for unnecessary help. You have no idea how difficult every movement is for me. I’m really not a lazy person, I just have to constantly balance movement and rest.
Friends have helped me with my few fundraisers, donated $, packed and sorted my household goods and even had a team effort to set up our new tiny kitchen! I am forever grateful to all of you for your prayers, donations, support and love. There is no way I can ever repay you for your trust in me that this is the best option to stop the progression of my disease. Sari drove 5 hours even when Jonathan was away for the weekend to help with the auction. Fred, Jonathan, Adam and Sari did the moving while I was ‘away.’ Jonathan just told me that the old house is nearly empty. Sari and Jonathan are still at it now!!!
I hope I can be more positive tomorrow!
Thank you so much for your continued love and prayers. I wish all of you would have known me as I was and not who I am currently. I still have my wicked sense of humor, although today there were extra tears. I look forward to being able to make Willie Franklin giggle at my inappropriate jokes : )
This was farewell to my dear friend Tom. He was here with his niece, Hatice and her husband, Kemal. He needs to go back to Melbourne for his son’s wedding in July! He was a good friend, shopped for cheese, chocolate, fruits and vegees and made a lovely donation to my hospital bill. When, I’m able to travel, I’ll be visiting his beautiful family in Melbourne!
Hatice has also been a great help to me. She visits, makes me tea and heats up yummy food her husband picked up! She will do fine with HSCT. I think she’s on the same schedule as Kellie and Judi 🙂
This is Allan and Nicky who just arrived to take Tom’s place. I’ve been told to ask them for anything I need..but my fridge is stocked : )
The highlight of today was an extremely festive tea party in the doctor’s lounge area.
Dr.Federonko and Anastasia has been working so hard collecting videos from past patients and organizing this 5th year anniversary. The videos were heartfelt and full of humor and depicted how lives had improved for the better, There were previous many previous HSCT patients there, the food was delicious and the conversation was lively. Many of the Russians spoke English and were able to translate for the rest. It was a living tribute to Dr. Fedorenko’s dedication to his patients. The staff had a lovely gathering for current & past patients today! Anastasia made a delicious surprise cake for Sheila’s birthday. I loved hearing the successful stories from people of all ages and types of autoimmune diseases. I was fortunate to be sitting across from Tatyana I. Iovona, PhD. She works for the European Hematology Association, Scientific Working Group for the Quality of Life and Symptoms. Geraldine Padilla, PhD will be so happy to be in contact with Tatyana again!!! I believe they worked together in 2006.
First Day went well. It could have been an easier day because I took a break from fundraising and slept from 7 PM until 9:30 AM. I still have to thank those that donated in the last two days. Please leave comments if you can. I want to know how to thank you, or where we’ve met – or not yet met!! My dear friend, Sigrid from Norway is fine with her fundraising. She told her cousin that I was still in need of funds. I asked her cousin if she lives near Sigrid in Norway. NO, she lives 10 – 15 minutes from me and I can thank her in person!!!
No chemo or treatment concerns so far. Stevie and Andrea are one day ahead. Sheila and I are on the same schedule and it’s always good to have a buddy. About 4 hours for the morning chemo.
About an hour and a half for the afternoon chemo.
No major ‘accidents’, no minor ‘accidents’ either : ) I got a bit cold, so I put on Adam’s warm, fuzzy hat.
Notice the beautiful tomatoes that Hatice delivered!!!!
I even got dressed and took a short walk. Nurse made sure I knew the last bottle would be delivered by 9PM. It was a short half hour and I’m done for today : )
Biggest question is how should we celebrate Sheila’s Birthday? No vodka shots mid chemo : )