June 30 – Third day of Chemo – Day 15

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!

This is  Adam when he was in Australia.

This is
Adam when he was in Australia.

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!!!

Not a typical photo of these two...but it was Dana and  Greg's wedding day!!!

Not a typical photo of these two…but it was Dana and
Greg’s wedding day!!!

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 : )

Sheila came for a visit.  We both had much needed showers : )

Sheila came for a visit. We both had much needed showers : )

Sheila loves the hat!

Sheila loves the hat!

Hatice brought delicious goodies and her family too!!!

Hatice brought delicious goodies and her family too!!!  We are so glad she is here ❤  Tom will be so proud of Nicky, Al and Hatice!!!

 

 

 

 

 

 

 

 

 

Advertisements

29 Comments on “June 30 – Third day of Chemo – Day 15”

  1. Alan says:

    Hi nancy its alan ali I know your locked up and cant have any visitors Is there anything you want or need i can get it for you and the nurse can bring it in for you

    Sent from my iPhone

    >

    Like

    • Alan, you are so sweet to me. So far so good. Please give Hatice and Nebashat a big hug from me! Saw some of the pre wedding festivities! I promise, if I run out of anything, I’ll let you know! Cheese, crackers! coffee, yogurt, all good : ) So glad you’re here…just in case I’m going through a withdrawal from an essential!
      Hugs to you too, of course!!!! ❤

      Like

  2. Donna Roozendaal says:

    Hang in there Nancy….xx

    Like

  3. Kristen says:

    As my dad would say, give Em hell Nancy!! Stay strong and determined and eye on your health!

    Like

    • Thanks so much, Kristen and for helping Adam. It’s been a lot for him to take on alone.
      Love all your kids photos as usual.
      I love Anne’s quote too, “Go, Fight, Win! She asked how I knew it was her?

      Like

  4. Pammi says:

    Hi Nancy
    Great to read your blog. Thinking of you and sending our strongest wishes and energy. I am Glad that Murray’s pointers were helpful. I will let him know.

    Like

    • You know how much his input helped me. He really came through for me! I feel your love, best wishes and energy! I am meeting lovely Aussie’s here who are treating me like family!!!
      My love to you both. < 3

      Like

  5. judisjourney says:

    Nancy, I promise God will provide. It might ebb in in cents and dollars, but he will provide. Keep your sweet spirit shining.

    Like

  6. Fundraising was so stressful. I had many mini breakdowns. Stay strong what is meant to be will be. Chad checks in on Monday look for a bald guy with s Canadian toque on. See you soon. Wendi

    Like

  7. Barbara Gewirtz says:

    After a difficult yesterday….
    I want you to know that MS cannot cripple love, it cannot shatter hope, it cannot destroy friendship, it cannot suppress memories, it cannot silence courage, it cannot invade the soul and it cannot conquer the spirit of community, so evident here, that is rooting for you. xo

    Like

    • Oh yes it can, MS sucks! I’ve lost a lot of dear friends over this crippling disease. We have to reinvent our lives and our relationships. It takes quite a toll. But, we have hope and 15 years of studies on our side to show that we can take actual steps to a better quality of life….and that is what it is all about!

      Like

  8. Thank you my dear friend! I had to track down Melissa Schwartz from Florida. Sometimes it so hard to thank people for being so kind, making donations and staying so positive! xoxoxo

    Like

  9. Joan Rhoades says:

    OH NANCY…You are so loved by so many…we see and hear and know the real you…PPMS can’t take YOU away…It’s a disease…and it’s a bitch of a disease…and it can’t take away your soul or your mind or your beautiful face. Those of us who have known you “before” see the same wonderful loving, kind, thoughtful, beautiful, caring, accepting (of our flaws), pizza loving woman…who has had so many challenges in her life and this is yet another. You will look back and see how today and the rest of the journey you’re on was a blip in time…and you will see your healing and the progress you made…and you will see the bills paid and you will be helping others with your information, experience and many gifts. No one wants to see you in pain…and we can see beyond it…remember when Fred was sick…you stood by and supported and helped him heal…if your kids need you you are there and would move mountains for them…so be grateful (I know you are) and rest and sleep and heal. That’s all you need to do right now. Listen to Adam!!! ❤ ❤ ❤

    Like

  10. msedita22 says:

    Hang in there Nancy. You are doing awesome. Although I have never met you in person,I feel like I have come to know a strong determined lady who will not take no for an answer.
    I am proud to call you friend.
    Best wishes, hugs and prayers.

    Like

  11. brookeslick says:

    Nancy, what a lovely and telling story you’ve written today. There are so many MSrs who can relate to your descriptions of day-to-day life pre-transplant. What really caught my attention was this line ” I wish all of you would have known me as I was and not who I am currently.” That one brought a tear to my eyes, as I’ve often thought the same thing. I want to say “I’m still in here! Please don’t judge my book (me) by my cover (body).” Good things are coming to you, Nancy. Keep that “wicked sense of humor” and you’ll do just fine.

    Like

  12. Janine Brown says:

    Hello my beautiful friend,
    If only love and prayers for your health and recovery could be redeemed for dollars. You’d be a gazillionaire by now! I admire your courage and tenacity. The funds will come! Continue to have faith. You have the love and emotional support of your friends and family behind you!

    Like

    • I’m having so much trouble replying to your comment. All my words keep disappearing. Third times the charm. You and Scott have been steadfast friends since we met by chance on a strange small bus as traveling companions. You kept Fred and I laughing the entire time, inappropriately mostly, but I loved it. Your encouragement and love means the world to me and you know it. Please ask Scott how long he thinks it will take me to grow a proper bun like Ann : ) Love you both and one day I expect to be well enough to travel to visit you both. PS not staying at a hotel!!!
      Phone is missing. I can Facetime, if the timing works out!

      Like

  13. Barbara Gewirtz says:

    I am 110% backing you. I wish I could do more. When you’re back in the states, perhaps I can be more of someone to lean on. I’m sorry for your tears. I would do anything and everything for you.

    Like

    • The work I’ll have to be doing after I recuperate will be pure strength training combined with rest. I’ll be needing to build up my muscles once again but without my body fighting against me maybe you won’t be quite as difficult. I’m ready for the challenge and up-and-down roller coaster that I’m sure will come with my recovery. I have a wonderful team of supportive people that have gone through this before during the last 15 years and will give me their help advice and expertise. I do lean on you and I do appreciate your support at all of your positive energy, it’s been very helpful. You’ve never doubted my decision to pursue this procedure as soon as I made the decision, and I thank you so much for that. Your amulet from Brooklyn never made it to Moscow. I use the delicious lipgloss even though it’s a hand challenge to open it each and every time. I love you lots and thank you for showing mom the pictures from the blog. I’m not sure Marcy made over yet, but she had a volunteered. love you bye.

      Like

  14. Adam Rashidi says:

    The funds will come. It is unfortunate that we lost so much time attempting to convince the few skeptics. The past is past and we’ve got to focus on doing the best job that we can in our specific roles. You need to focus on your body, and I need to focus on fundraising.

    Liked by 2 people

    • Adam, I love you so much. You have been so helpful to me every day that you’ve been home from school I really appreciate. From your fundraising team (Allie and her entourage), your making me breakfast every morning before work, so I could continue to exercise, to taking me to physical therapy even though you had to go right back to work after you dropped me back home, to helping me with anything that needed to be done around the house, to helping me with the blog even though we had to call Brooke Slick constantly for extra help, to give me hugs everyday and understanding when I was full of tears and still making me laugh every day. Next step is bringing the family back together, so we can appreciate what we have to offer and forgive and forget anything from the past. We can do it!!! ❤

      Like

  15. Melissa J. Goldberg says:

    I am sorry for all the troubles you are going through. I know it is trite… but you really look good.

    Like

    • I’m really doing well. Still trying to gather more funds… But I’m an optimist. Could still fundraise what I need for treatment and related costs!!!
      Thanks so much, Melissa!

      Like


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s