Home Sweet Home

WE ARE HOME!!!
My husband, Tim, and I boarded a flight from Frankfurt this past Sunday to head back home to Boston (Duxbury, MA). It was a beautiful sunny Sunday morning! I felt God’s caring spirit bidding us a safe trip home! This past month has been a challenge for me to say the least but I survived it just fine. And the million dollar question: Toni, would you do this treatment again if you had to? My answer to this would be an emphatic YES!!!

I owe you an apology for not staying in touch this past month. My waves of sickness were relentless and unfortunately for all of you, the last thing I felt like doing was battling the inconsistent hospital internet service while my dreadful sickness decided to keep a strong hold of me so please forgive me for not staying in touch!

There is not a single day that passes that I continue to feel grateful for our Lord’s blessings and all that he has given me and my family during this journey. I will never forget all the exceptional care that I was fortunate to receive in Heildelberg, especially during this challenging month.

As you remember from my last posting, I received an aggressive week of chemotherapy and seemed to get through it just fine after my initial allergic reaction on the first day. After the week of chemotherapy, things did begin to turn into more of a challenge. Soon after my new stem cell birthday, September 17, 2013, a few annoying but painful reactions arrived and decided to settle in for awhile. First, the aggressive nature of the chemotherapy I received created complications with my gastrointestinal tract. This post chemotherapy complication (Mucositis) and is quite common and is graded #1–#4, with #4 being the most severe. Unfortunately, my oncologist shared with me that my case was a confirmed grade #4 and that it would take a few weeks for me to recover. Regardless of how terrible I was feeling! my walk each day and my daily visit with my physical therapist helped me focus on staying positive and to ride out this stomach…….Oh, did I mention how fabulous the medical team of doctors and nurses were with all of this????

The additional post chemotherapy complication I have been dealing with is an itchy rash that has basically wreaked havoc on sleeping each night. The rash may have been a reaction to the many drugs I received and I am hoping that it will not continue much longer!

Ok, enough with the complaining! This past week, while waiting for my approval to head home, I continued to take daily walks each day after breakfast but It took me awhile to get in the routine of walking. Getting myself out of bed each morning was a real struggle but I was determined to keep getting some exercise each day. While still at the hospital, I had started on a stationery bike with my Physical Therapist and then was able to transition into walking 15 minutes each day. It is still a challenge to me but I continue to make it a priority as it has continued to keep my spirits high. Here I am with my Physical Therapist, Andrea!

One thing that continued to keep me motivated to walk each day was seeing the bikers that I would greet! These Germans do get their exercise rain, or shine! What’s remarkable to see here is the designated bike path that greets you everywhere you go! Gosh, wouldn’t a bike path be great to have in our neighborhoods?

I’m sure all of you, those with MS and those without, may be wondering what’s next, Toni. Did your treatment work? It all depends on how one defines “work”. I can only speak in terms of what I know as far as the treatment I received. The intense chemotherapy coupled with the return of healthy MS-free stem cells, has allow my body to hit the reset button. I no longer am at the mercy of MS relapses or those dreadful drugs. I will receive confirmation of my state of my MS at my next MRI appointment with my neurologist this coming Spring!

Currently, I am desperately trying to keep the virtue of “patience” front and center in my life, I will need to keep reminding myself that this recovery will be a long and arduous one. You should all know that the aggressive chemotherapy I received will continually remind me that there will be days that I am able to go for a walk and other days, that it will not be possible. I’ll need to remind myself that my new immune system will require months to recover and become operational again. I feel this limitation now and although very concerned about it, I know the wonderful medical care I will be receiving now that I’m back will keep focused and on track to my journey for wellness. I will need months to heal from all the damage that occurred from my MS disease and will also need months of healing from the chemotherapy treatment that I received. I have God’s grace and guidance helping me through this from the beginning of my journey and I know he will be there now for me!

Here, I am posing enthusiastically this past Friday for a picture before I head into my final medical check with Dr. Blank. My visit was a great one with Dr. Blank and he gave me all the confidence to proceed with my flight back home on Sunday! Also pictured here is my my stem cell birthday, September 17, 2013 🙂 A day I will never forget!
God Bless You!

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Let’s get down to business!

I’ve finally arrived here at Heidelberg University Hospital! I was admitted on Monday, September 9th and things have all fallen into place EXCEPT for the sporadic internet service here. This is why you haven’t received an update from me until now. And also, my IPad is doing some strange things like its inability to load pictures and place them exactly were I want them so please bear with me!

After settling into my hospital room on Monday, it finally hit me! This was going to happen! I am getting the chance to halt this dreadful and unpredictable disease! Regardless of the outcome, I can look in the mirror and tell myself that I did everything humanly possible to stop this aggressive illness and try to push it into remission. I am so very blessed! To be blessed with the opportunity to change my life for the better….to be blessed with a better life for me and my family.

With my hospital admission past me, I now needed to get myself mentally prepared for what would be required of me to receive treatment. This meant the infamous catheter placement near my carotid artery in my neck that would routinely and accurately deliver the chemotherapy to me while here in the hospital. All my sleepless nights thinking about this darn catheter prior to my admission were all a waste of time as the procedure was not bad at all! I made it through just fine! I was not at all surprised to be so impressed with the nursing staff and the doctors in charge of this step of my journey! After a quick chest x-ray to confirm proper catheter placement, I was told that things were looking great and I was now prepared to receive my first round of high dose chemotherapy on Tuesday morning. Lucky me!

I awoke on Tuesday ready for the challenge! Unfortunately, Tuesday did end up being quite an eventful day for me as I had an allergic reaction from the chemotherapy drug called Carmustin …Who would have thought the first dose and only dose of the day would make my blood pressure drop and have droves of nurses and doctors rush to my side? After quickly receiving an antihistamine, a bedside EKG and a blood pressure cuff monitoring my vitals, things did subside pretty quickly! There was no doubt in my mind that I was in the best of hands…. and all the activity wiped me out…! I fell soundly asleep!

On Wednesday, I had two rounds of chemo (AM and PM) but what was great about it being Wednesday was that all the Hospital’s Physical Therapists make available a great exercise room to patients on Mon.,Wed.,and Fri.. At their invitation, I was able to use a stationary bike and do some weight training as well. Despite the fatigue, I was feeling good!

The daily double dose of chemo will continue until today (Saturday). I was doing well after my treatments thus far and I even ventured out walking to get some exercise in between doses. As I walked around the hospital, I was reminded of how fortunate I am to be getting treatment here….a state of the art hospital with an amazing staff of top notch nurses and doctors! Does it get any better than this?

Outside of keeping fit, my only other duty here is to stay hydrated and continuously increase and record my fluid consumption in an effort to keep these kidneys and liver happy! Only sparkling water is recommended here! Fortunately for me, I have always been a sparkling water kinda gal so this was a breeze…!

Since Tuesday morning, I along with the nurses and doctors have been at work teaming up with our diligent “chemo agents” and letting them do “their thing”….So now we are here Saturday morning ….. About to receive a stronger dose of treatment but am empowered by the fact that I made it through yesterday’s Friday the 13th with no problems at all! There is never a time that I forget to count all the blessings that I receive each hour of every day! I continue to feel blessed by God’s everlasting grace and encouragement as I proceed through this challenging part of my journey.

You know the old expression… Time flies when your having fun? Well, this week has gone by incredibly fast and it’s not because I was having fun but because I just wanted to keep busy and move quickly now h with treatment and get it behind me. My chemotherapy will continue until early Monday morning, September 16th. And then, the highlight of my treatment will be on Tuesday, September 17th when I am given a new chance at life without MS. With God’s blessings and grace, my collected/harvested stem cells will be returned to me on Tuesday, September 17th…a second chance…a new birthday! Stay tuned!

The week ahead is both an exciting one and a physically challenging one. Exciting indeed to have my stem cells given back to me but it will be just in time for when the effects from the chemotherapy I received will start taking its toll! My promise to you is that I will continue to maintain a positive approach throughout. I am overwhelmed with emotion and right now, there are not many other words that come to mind….only a vivid image of my two daughters, Kate and Claire several years ago. Picture this: It is early Sunday morning and they are already up and ready to take their early morning ride to Brook School in Andover, MA for their weekly club team lacrosse practice at 6 a.m. but with their initial practice warm-up beginning at 5:45 a.m., they’ll need to leave home by 4:30 a.m. It is dark, cold and damp and they are usually both tired at this time…who isn’t? Without a fuss, they welcome the challenge so early like they do every Sunday and know that a lot will be asked of them today. They will not complain or make excuses. They will smile with confidence when they are reminded of their responsibilities…..they will know what is expected of them from their coach and more importantly, what their teammates expect of them as well…..They will only settle for a 100% commitment of themselves. And now years later, they are past their club team commitments but still bring what they’ve learned from their experience back then to each day of their lives now. They have taught me well! I have learned so much from them as I go through this journey to wellness! And its now my turn….no excuses…no second guessing… no complaining. Its time to get to work and time to get well. With God’s grace and guidance, I will do just that!
Stay well! God Bless You!
Photo Caption:
Photo #1 Chemo drug cart! Let’s get this party started!
Photo #2 Me…post catheter insertion euphoria
Photo #3 Loving that sparkling water!
Photo #4 & 5 My wonderful girls! (L-R) Kate & Claire 🙂

Hawaii

A Blissful and Blessed Existence

A Blissful and Blessed Existence!

I really don’t have much of an update “yet”…..but wanted to touch base with you even if its just to let you know that I am doing well so far EXCEPT for the waiting game that’s in play now! In an effort to keep positive and keep the unknown demons at bay, Denise and I decided to continue on with experiencing this wonderful city with further sight seeing, some shopping and eating at some local restaurants…What a blissful and blessed existence!
As I mentioned to you in my previous post, the hospital will be in touch with me tomorrow to confirm what the admission date might be this week. Notice the word “might”… Sooooooo we wait and wait… in the meantime…. We keep on keeping on….with playing tourist!
Here we are at a wonderful restaurant, DaVinci….Denise and I were in a state of bliss as the waiter, Fausto spoiled us!

For dessert…Yes, you guessed it…We went back to our favorite place for ice-cream, Capri. I finally convinced Denise to join me! Here she is relenting…I don’t think I had to do much convincing…I had the owner on my side…here he is pictured in between us…A jolly fellow!

This week, I was fortunate to meet some wonderful new friends. Pictured below meet, Suzzi Barlin who plans to seek HSCT treatment soon. An attorney and loving mother to her young daughter, Suzzi needs to get her life back for herself and for her family!

Also pictured here is Nzinga and Ayo…..a wonderfully gracious mother and daughter from Baltimore Maryland who is devoting her time to teach here in Heidleberg. It was wonderful to speak to them in English and to hear about their journey!

In an effort to keep in check all the lunches and ice-cream we are eating, here we are getting some walking in too!

I continue to feel so very blessed thus far with my journey! Not a day goes by that I am not thankful for ALL that our dear Lord has given me! I attend weekly catholic mass service at St. Anna Church here in downtown Heidelberg… Each week, this has become a very special place for me as my mother’s name is Anna. I feel my mothers peaceful spirit and strength when I am here and ask her continued support.

I am grateful to all of you for your patience and prayers! I promise that I will check in with you as soon as I hear what my hospital admission date will be! Once I receive admission, I will be moving quickly into the a three week hospital stay which would consist of: the week long chemotherapy phase of my treatment, stem cell rein-fusion (my new birthday) and then the recovery phase…It is my hope that your prayers will continue…hope that my treatment will be tolerable and hope that my journey for wellness will be blessed with remission and God’s grace and guidance.
God Bless You!

We all scream for ice cream….and flowers, of course!!!

My doctors appointment this past week went well! I’ve been given a tentative hospital admission date of Monday, September 9th! It is “tentative” for two reasons…bed availability and the health condition of the patient being admitted. Since my medical case is not considered “life threatening” (yet?), I will need to take a back seat to those not fortunate enough to be in my shoes…..I support this 100%!!!

My doctors visit was met with tests and more tests…EKG, oodles and oodles of blood work AND the infamous 24 hour urine test!!!! Here I stand with my lovely urine collection bottle and test tubes…pretty funny…!

Oh, I forgot to mention my hair or lack of it! Here I am in full view. Would you believe that I am loving it this way and never thought I would be getting used to it??? …NO blow drying no hair strengthening….just wash and go!

To celebrate my tentative hospital admission date and another wonderful week of sight seeing coming up this week, Denise and I opted to do some shopping and ice scream eating…Although I was the one doing all the eating and she was doing all the watching!

Denise …. Watching!!!

Toni….Eating!!!

More important, would like to send my sweet dear friend Brooke Slick a HUGE Hug and Kiss and thank her for the endless support she has given me while seeking treatment here in Heidelberg…AND for these beautiful flowers!!! YOU Rock Girl!

Let’s Dance

Let’s Dance….! Yes! The actual dancing may need to wait awhile but I am happy to report that I danced right through the harvesting of my stem cells yesterday! I was able to provide a total of 8 million stem cells to support my HSCT treatment. Dr. Anita Schmitt, the hematologist who oversaw my stem cell harvest yesterday was thrilled at the quantity of stem cells harvested as the required amount to support my transplant is 2 million so I’ve got another 6 million to spare! The harvested stem cells have been collected and safely stored now until they are needed to restore my immune system.

I was thrilled to have the harvesting of my stem cells behind me now. All the excitement left me weak and dizzy but a nice afternoon nap was all I needed to get me back on tract again. A week of recommended rest will begin now and then a meeting of the transplant team will take place on Tuesday, August 27th. It is at this time that a finalized schedule of treatment will hopefully be confirmed. This final schedule will include a week long regimen of chemotherapy and the reinfusion of my collected stem cells. I am expected to be hospitalized during this time. I continue to remain impressed with the doctors and nurses who have provided care for me during this time. I am so grateful to them.

Pictured here is my nurse, Renata, Dr. Schmitt (in blue) and another great nurse thrilled at the outcome!

Here again is Renata….an amazing nurse and cheerleader!!!

Last pucture is me with Renata. An amazing nurse and cheerleader to boot!

Since I’ve entitled this post, Let’s Dance…..here is one of my favorite clips…I send a special thanks to a dear friend Rita for this! Love, Love, Love the dancing……does it get any better???

God Bless You!

http://www.youtube.com/watch_popup?v=mz3CPzdCDws

It’s a Wonderful Life :)

During certain times of the year, I take a moment and listen to the birds each morning outside my bedroom window as I awake and thank our Lord for another day. With their pleasant melodic songs, I am convinced that the birds too sing thanks to God for their blessings each day and I thank them for reminding me of this!

I have lots to be thankful for this past week: My wonderful nieces Sonia and Denise arrived from Italy! Sonia, Denise and I are the same age and grew up together! I used to summer in an Abruzzi village called Lettomanoppello. This quaint little town is where both my parents were born and grew up and where my brothers were born too. The three of us, although born in America, always tried to keep our Italian heritage front and center in our lives and shared our experiences about summering in Italy with others. Currently, Sonia and Denise live in Abruzzi with their families and it is a gift to have them visit with me while I’m in Heidelberg. Sonia needed to return back home but Denise will remain with me while getting treated in Germany. I am so very grateful to Denise for being here with me through thick and thin!!!

Pictured here are my two nieces: Denise and Sonia

After helping my nieces settle in, I headed off to the hospital on Thursday and Friday for my two day outpatient doses of Chemo. I sailed through just fine and was thrilled to have this “first” over with. I was given anti nausea meds and this was what did the trick as I experienced very little nausea. Here we are over the weekend having fun out in the sun!

Oh! forgot to mention my hair! It will be inevitable over the next month that I will be loosing all my hair when I receive the week long chemo regimen to reset my immune system. To hedge this inevitable “event” a bit, I decided to get a serious hair trim in preparation…. Here I am with the hairdresser who was in charge of this lovely deed! Talk about BEAUTY and THE BEAST!!! Here with me is Sandra…:)
!

On a more serious note, I should share with you that I’ve been keeping track of my MS symptoms and deficits and am determined to rise above the highs and lows of this challenging treatment. The most difficult part of all this treatment is the use of high dose chemo which is the key to my achieving wellness (remission). This chemo may cause issues with my current MS symptoms and deficits. I may experience worsening (hopefully temporary) of my MS while I receive and recover from the chemo. I’ll need to stay focused on the end result (REMISSION) and keep reminding myself to be patient! I take comfort to know that God is holding my hand tightly through this now…I am strengthened and overwhelmed with gratitude! And YES…It’s a Wonderful Life! God Bless You!

Amen!

Before leaving for Heidelberg, I had shared with you how grateful I was (and still continue to be) about your well wishes and prayers as I move forward with my treatment. As I mentioned in a previous post, my journey to wellness was one to seek remission for my progressive MS but to seek spiritual wellness too! It was my plan to seek out a Catholic Church as soon as I arrived here in Heidelberg….this goal seemed simple enough, right? Well, it has not been as easy as I thought as it has taken me over a week to figure out that Catholic Churches in Heidelberg are not open routinely to the public over the summer months!

After visiting several churches and finding them locked, a wave of panic set in! Several people back home reassured me that there were many catholic in Germany so finding a one would be an easy task! Being so far away from home, this was a priority with me as it was my hope to connect with a local church and priest in an effort to feed my faith in God as he has held my hand so tightly up until now! I eventually discovered that during the summer months here in Heidelberg, the churches did take turns being open to the public throughout the week and would publish which churches were open and what time they provide mass to the public. I found this vital information in the nick of time for this past Sunday as Tim and I attended a Jesuit Church in Old Heildelberg. This cathedral like church was very inspirational and so beautiful. My picture did not do it justice so I hope to post another picture of this great Church before I return home. God Bless You!

It was another glorious Sunday and as promised, I wanted to post a few more pictures of the wonderful church I attended last week and post some from this week too! Endless thanks to Karina Grunwald Berant of Chile for sharing these pictures. She had HSCT in Heildelberg 8 months ago and doing well with her recovery. Thanks Karina for these great pics!

Let’s keep the party going…at least through this weekend:)

Let’s keep the party going..at least through this weekend!

The approval to receive HSCT for my MS has begun to settle in with me…..and I’ve been having mixed emotions about it. I know that this journey will be a tough and long one. But, I also know that I have been given a chance at a life without the threat of this progressive and insidious disease!

All my pre treatment testing was completed early this morning. I am looking forward to the weekend free from all the poking and prodding for the next several days. So this means that a little site seeing and restaurant hopping are in order! I am really fortunate to have a dear friend, Soula from Australia who is just three weeks ahead of me with her treatment and has been so kind to pave the way for me as we both receive an autologous HSCT 🙂 Soula too hopes to push her MS into remission and looks forward to her future with her husband and three sons! Here is me and Soula after meeting for the first time here in Heidelberg! Her positive attitude is contagious and I want to catch as much of it as I can from her!

I was also fortunate to find a great health club in Heidelberg. A must for me as it will continue to keep me in shape and in good spirits! I was so thrilled to meet a few trainers of the health club to show me around to get me started on a weight training program.

After this glorious week off, I’ll need to begin treatment on August 8th-9th as an outpatient to receive my first two doses of chemotherapy. I will then be asked to begin daily injections of Neupogen to stimulate and release my stem cells from my bone marrow into my blood stream. I’ll require a minimum of 2,000,000 stem cells for the transplant. During this time, my blood values will be monitored and once the stem cell minimum quantity of 2,000,000 is reached, my stem cells will be harvested and stored safely prior to the week long chemotherapy that I’ll receive. I’ll keep you posted on when all this will be happening…..Stay tuned!

My husband Tim and I are sitting very comfortably under a grapevine arbor after just finishing a wonderful lunch at Da Claudia’s, an Italian restaurant in downtown Heidelberg. This was already our second time visiting here….so given that I had an amazing Italian mom who was a fantastic cook, the food here must be pretty good!

One Step Forward

I want to apologize for keeping all of you in the dark these last few days. I had every intention to post a detailed update this morning but accidentally deleted my post to you. This is the only bad news!

The last few days have been filled with high activity both in trying to settle into our apartment and in navigating through wonderful Heidelberg. The experience thus far has been terrific as the people here are extremely friendly and their willingness to help us is just amazing!

My last few days here have been spent at Heidelberg University Hospital for consultation and testing…I thought this time would never get here! I wouldn’t be honest with you if I didn’t share that I did not sleep much thinking about my hospital visit in particular with the head of Neurology, Professor Platten. In my earlier post, I referred to him as the “gate keeper” as he would make the final decision about my acceptance for HSCT treatment here at Heidelberg. I am happy to report that Professor Platten was a dream come true! His kind, compassionate and positive demeanor put me at ease immediately. It was obvious to me that he had spent a considerable amount of time to review my medical history in great detail and was able to speak with me about my MS and its progression without burying his head in his computer or my medical files. It was reassuring to hear from him that he believed that with my disease history and progression, he considered me to be a good candidate for treatment and believed that it would give me a chance to push my disease progression into remission.

Today, I had the opportunity to meet two other doctors (oncologists) that will oversee my care while here in Heidelberg….I had such a great feeling after meeting with them! I am confident to be in such great care with them in charge!

I stand here with Professor Platten (he must be at least 6 1/2 feet tall!). He assured me that he will approve my HSCT here at Heidelberg!!!! I am also pictured here with Doctor Katharina Lisenko and Doctor Norbet Blank (Oncologists) overseeing my care:)

Your priceless gift….

Your priceless gift…..

I have heard from so many of you these past few months. I am so grateful to all of you for your support through emails, FB posts, cards, phone calls/texts, invites, a meaningful book or DVD, a warm reassuring smile or hug, your willingness to follow me on my blog or your gracious willingness to provide a meal or two for my family.

I am so thankful to you for your support but I am MOST thankful for your prayers. Your priceless gift of prayer has strengthen me beyond words and I am so grateful to you! My Blog entitled “My Journey to Wellness” has a double meaning for me. The obvious meaning is that it is my hope that this treatment will move my progressing MS into remission and to seek wellness for me and my family. The other “Wellness” I refer to is a spiritual wellness as I begin my journey. It is my hope that we may achieve this spiritual wellness that I speak of together as we move through these next few months.

My catholic upbringing has had it’s ups and downs over but it is over the last few years that I’ve been blessed to experience the power of prayer and the reassuring feeling of God’s grace. Last Saturday, I invited many of you to attend Mass with me at Holy Family Church in Duxbury. I was touched to see so many of you at our Saturday mass as you offered your prayers for me. Also, there were many others who expressed their support through their prayers in their absence on Saturday and wished me well for my upcoming journey. There is no doubt that the power of your prayers were felt that night and I left knowing that it was God’s grace at work through all of you! I am at peace to move forward now with my journey and have faith in God’s plan for me.

It is my hope to find a Catholic Church nearby when I settle into Heidelberg, Germany this coming weekend. I know that your priceless gift of prayer will continue to sustain me throughout these next few months! God Bless You!