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March 23, 2016

I am back from Germany


It is so good to be home! It was quite the journey up to the very last moment. Curtis and I arrived home Monday morning at 4:00 am, we were exhausted from our journey as you will quickly learn of our unexpected adventures.

 
Friday after treatment Mr. B. drove me straight from Infusio to the Couva boarding house, to pick-up Curtis, and all our luggage. I did not desire to do a double check of the flat to insure I packed everything the night before, I just wanted to leave. I was done with treatment and ready to move onto the next chapter. Curtis and I had booked a room at a hotel attached to the Frankfurt airport, this would be our drop point for Mr. B. It was the craziest drop-off ever. There were absolutely no signs leading to the hotel; we could see the hotel but couldn't figure out how to get there! Through a series of events we found ourselves in a parking garage, lost. Our bags were on a luggage cart and the three of us were wondering around, clearly lost. After asking a few people for directions, this kind man began escorting us through a series of hallways, elevators, more hallways, and elevators; at times I was running to keep up with his fast walking pace, until we finally found the entrance to the hotel! As I was checking us in, the nice man was asking Curtis for money - a finders fee of sorts. Curtis was a bit pissed but I was more than happy to pay the guy. With a final squeeze of Mr. B and a friendly wave goodbye, he left us and we were on our own. We settled into our hotel room had a few minor issues, but the hotel was extremely accommodating. YES, finally, American regular sheets - so delightful. Above are a couple photos of the airport from our hotel.

Departure day was here, Sunday - time to travel back to Oregon. A gentleman from the hotel loaded our luggage on a cart and took us directly to the Condor gate; as the woman checked our bags, she asked how long we were in Germany and if we enjoyed ourselves. As she was reviewing our passports I shared that I was getting cancer treatment - she exclaimed "oh shit!" in her British accent, it was quite funny. Bags were checked, no problems and the nice woman offered to get us a cart to scoot through the airport as it is huge. We loaded into the cart and were escorted in style to the front of the line. Security double checked my computer and then went completely through my carry-on bag. At the other side of the security was another cart waiting to deliver us to a travel lounge by the departure gate. We grabbed a quick bite to eat and then headed to the gate when boarding was scheduled. We stood in the crowd when all of a sudden we were surrounded by police and security. That's when I thought "oh shit". We were escorted to a secondary security site searched, scanned, and questioned. We were let go - thankfully. Shortly after that we boarded the 12 hour flight from Frankfurt to Vegas. The flight was uneventful. Curtis slept for a few hours - I was wide awake; it was the middle of the day. By the time we landed in Vegas, I was pooped and ready to go to sleep, it was 11:30 pm Frankfurt time, well past my bedtime. 

We knew we had a four hour layover and thought that was okay because we had to go through customs, pick-up our luggage, re-check the luggage, and then head to security. Rounding the corner to go through customs we were shocked by the lines of people. We quickly scanned and figured out that we did not have to wait in the "visiting" line, we promptly went the the US Citizen line, there was only one person in front of me. The man questioned me, why I was wearing a mask "so you are wearing it because of germs or what?" Matching his tone, I stated "well kind of, I have terminal cancer". The questions stopped. We then headed to claim our baggage - which took forever to come out. One more potential hurdle with the baggage, getting out of the customs area. I quickly removed my mask as to not draw additional attention. The woman smiled and said that she liked my hair. We then rechecked our bags without incident and headed to security. The cattle line was amazingly long; that created an incredible illusion, just when you think you have arrived, you have not. When we got to a point in the line where I could flag down a TSA agent, I explained I could no longer stand in the line so we were able to jump the line! Cancer Benefits! By our measurement people were in the line for about 30 minutes. 

We grabbed a bite to eat and found a spot where I could lay down on the ground and maybe go to sleep. By then the flight was scheduled to leave in an hour. I laid out my blanket and laid down, closed my eyes, and then heard Curtis say - the flight is delayed. The flight continued to be delayed. We were originally scheduled to arrive in Oregon around 10:00 pm, we did not land in Portland until 2:00 am, we both slept during the 1.5 hour flight. By the time we arrived home it was 4:00 am. We were met by beautiful potted flowers outside our front door compliments of Elaine. When we opened the door Junior met us - he was so happy to see us and seemed a bit pissed that we had been gone for so long. Jackson and Cole had made a welcome home sign along with some flowers; there too was a card with flowers and a balloon from Elaine. I gave both my sleeping kiddos a squeeze and Curtis and I headed to bed. Surprisingly, Curtis and I both awoke at 9:00 am and started our day. It took me all day to unpack and I did not finish the laundry until the next day. 

Here are some photos from the trip that I did not have a chance to share yet. 
Whole new meaning to peeing cheek to cheek!

 

Pictured above are my new friends Sonya (L) and Jeannie & Joel (R)


The big question now is - was the treatment successful. This is going to be a wait and see kind of thing. While in Frankfurt, I did monitor my tumor cell markers; at first they continued to increase but at a slower rate then prior to treatment. By the end of treatment, one tumor marker continued to decrease while the other one was within points of when I first arrived. While this may sound discouraging, it is just the opposite. The treatment clearly slowed tumor activity. I expect this will continue as the months progress. I am giving myself shots every four days for 16 times. I have done a lot of research on this treatment and I am super excited about the possibilities; the injection increases the macrophage, cancer cell eating army, in the body. This medicine is not available in the US and is said to cost $1000 a vial, for 8 shots. If this injection proves to be successful in my body, I will be finding a way to obtain more so I can continue treating this cancer until it is gone. There is a large tumor that continues to grow under my arm; its pretty uncomfortable. I am using an infrared light at least one hour a day on the tumor area site - at home hyperthermia along with using an infrared sauna every other day for as long as possible; I am going to have to work my way up to 60 minutes - I am at 17 minutes right now. Of course I am doing a whole host of other things with my diet and supplements.

Today, Curtis and I went to see my oncologist. The appointment was quite devastating and I was not prepared for what I learned. We went there with two action items, first to follow-up on the death with dignity process and obtaining the prescription and the second,  to see the PET/CT scans taken after chemotherapy back in December 2015. Although I had received the written report, I wanted to see the images. When the doctor pulled up the scans, I was pretty sure he clicked on the wrong date, but he had not. I was shocked to see the images. I then asked to see the pre-chemotherapy images. When he presented those, I started to cry. Although I had read the reports, the images were much more telling - the amount of black areas, noting cancer, was marked. It literally took my breath away. He then went back to the post chemotherapy images and asked what do you think when you see these images. My response "oh shit". What I didn't tell him was the rest of the sentence, I am going to die. He asked if I wanted to discuss treatment options, I told he there is no way my body can take chemotherapy again - it nearly killed me last time. He shifted the conversation to my Germany treatment. Curtis and I both left a bit stunned. I couldn't contain myself. We had planned to eat at Kylo's but I said no. We continued down the coast line traveling back home, I stared out the window looking at the ocean, tears flowing uncontrollably. I asked Curtis to pull over, I had to get out of the car. I walked to the edge of the cliff and stood on a rock overlooking the ocean. I cried. I wanted to scream, but I couldn't. I breathed in the cold, fresh, ocean air. I felt the wind whisper, it is going to be okay. I felt a peace cover my body. It was very cold and windy. Curtis joined me on the rock, I was shivering so he took me back to the car. I turned up the heat, rolled my window down, opened the sun roof, and watched the waves. I don't know how long we were there. I had just experienced feeling desperate and hopeless, something I never wanted to feel and when I did - I had to get out of the car. The ocean air calmed my mind, soul, and body. I was able to refocus and find that peaceful place. I was still crying, but the tears were not of desperation and hopelessness. As I type this, the tears are flowing - how can they not. I am reminding myself that I just underwent an intensive month long treatment and the next 60 days are critical to healing and ridding my body of this cancer. Patient, be patient. 

Bottom line, I feel pretty good, much better than when I left. My energy is increasing which is awesome. I am just going to keep looking forward while remaining hopeful. Please keep me in your prayers and sending positive healing energy my direction. Thank you to everyone that is rooting for me and who continue to be a part of my journey. I am so fortunate to have many around me that love and support me - I am a lucky girl, I am choosing to live in gratitude.

Today, I am hopeful~   

March 13, 2016

March 13, 2016 - Monday marks my last week of treatment in Germany


Rough day; tears and lost eyelashes.
It has been an interesting third week of treatment - but good. Life would be incredibly boring without some type of something going on to work on, deal with, and grow from. Last week started off tearful, feeling broken and in pain; feeling as though my body was failing me yet again by not producing veins to carry my IV treatments comfortably  and expeditiously. It made for incredibly long days and painful infusions. Monday, I was just happy that Nadine found a vein! The infusions were dripping slowly and a bit painful but I made it through, then Tuesday came along and the pain was unbearable by the third infusion - it burned going in so we had to shut it down. Thankfully, Nadine was able to tap into one of my "blood veins" as I call them and we were off and running. My tears made my fake eyelashes fall off which made being an ugly crier even uglier! I was comforted by the staff and my new friends; all was well.

I could tell you about Curtis having to help give me an enema so I could poop, late evening trips to the market for prunes, lighting small wish lanterns, getting salmon from our favorite restaurant, funny treatment moments, oh and how I shit myself, and all our other outings, but I shall keep some details to myself to share in person upon my return! 

One outing I will share is when Curtis and I returned to the footbridge to place a lock on it to symbolize our love and commitment to each other. After placing the lock, we threw the keys into the river.
Our lock is the bright yellow one, we attached it to a heart lock.

 

 I have posted many updates on FB as it was easier and I was tired and still wanted to keep everyone in the loop. So this posting may seem incomplete to some. I am so excited to return home! Today, I pulled out all my suitcases and lined them up - getting ready to leave this treatment phase and start this next phase of my life. I am so ready to be done with treatment that Curtis and I have decided that after I leave treatment on Friday, we are going to leave this apartment and stay at a hotel by the airport for two nights until our flight leaves. Added bonus, fresh towels and American sheets!!! I can't wait. There has been a disappointing saga surrounding our apartment accommodations or lack thereof. I have authored an extensive letter that I plan to present to Infusio Wednesday morning -  I will share after I send it to them.

Last night was pretty scary for a fellow patient. She called asking if Curtis could get her some special water from the store, she was very weak, stomach swollen, and her spirit broken. Her husband had to return home to the states as she entered her second week of treatment. Each day when I saw her, my concern grew for her. We all visited for a while but as we said goodbye, I had a feeling she was going to need additional care. When I awoke Sunday morning, I sent her a text and learned she had gone to the hospital only a couple hours after we left her. The good news is that after a blood transfusion and additional treatments, she is feeling a little bit better and her husband is scheduled to return tomorrow. 

FaceBook Posting:

I want to express my gratitude to Mr. B (Bogdon) the driver from Infusio that came to a fellow patients' aid late last night; she was very ill and needed to go to the hospital. He provided the most compassionate service by personally taking her to the Emergency Room, which is not a simple process here in Germany. This patient is a US citizen, staying alone in Germany and does not speak German. I cannot imagine trying to navigate an emergency not knowing the language! Mr B, you ROCK!!

Today, because he has a loving heart, Mr. B picked my husband and I up at our apartment and accompanied us to the hospital to visit our friend; to let her know she is not alone! I truly hope Infusio sees the value of Mr. B's act of kindness and properly reimburses him for his time as well as recognizes him for his outstanding patient service at Infusio. Mr. B truly lived up to the meaning of his name "God's Gift".

As we arrived at the hospital, Mr. B began speaking to the bright eyed young lady in German, her response "do you speak English?". Oh my gosh, I was so so excited I actually raised my hand high into the air and exclaimed "I do!!" We then were provided directions, in English, to another building where there was a patient information desk. Mr. B nudged me and said "you do your English". I laughed and started rambling questions - pretty quickly it was clear this woman did not speak English so I tagged Mr. B back in. We laughed and started walking toward the elevators; talk about small - literally four people could comfortably fit in the elevator. When it stopped for another person, I raised my hand up signalling HELL NO while saying a firm German accent "No". I was thrilled to arrive at floor 8- I burst through the doors. We found my friends room and she looked better. She was sharing a room with a German woman, I think it was nice that she had some company finally. My friend recounted the nightmare of Michael who ripped the hoodie from her body and the repeatably and feverishly stabbed her over and over trying to get a vein - she was making the stabbing motion. My friend was laying there is tears, alone. Finally he found a vein and she was able to get a blood transfusion. My friend told us that later she saw Michael who walked passed her and waved to her in a creepy fashion. What a nightmare for her. Later I was texting with my her and I had to admit that the hospital freaked me out - I didn't tell her this (but she will know when she reads this) but the setting reminded me of an insane asylum, so blank, quiet, doors closed, and creepy. I told Curtis and Mr. B, never take me there, just take me to the airport! LOL 

As I enter this last week of treatment, I am hopeful that my health will continue to improve and that my life will be extended. Being away from my son, doggie, and creature comforts for over three weeks time as of today, has been one of the most difficult things I have done. I am going to be BEYOND excited to get back on American soil, surrounded by all my wonderful family and friends. This week will go fast, I am counting on it. I too am channeling good veins as I end this journey in Germany. 

You know, tonight I looked at Curtis and said, I am so lucky - it is because of all these people that believe in me and love me that I am able to be here getting this treatment, what a lucky girl I am. I am so grateful to each one of you that has joined me in this journey, endlessly believe in me, and love me so deeply. 

Quilt drawing is nearing; don't miss out!


For every ten dollars you donate, you will get an entry for a chance to win the quilt pictured here, called ‘Rebel’. We will draw the winning ticket on March 21st, the day after Christina and Curtis return from Germany. We hope to dig through many tickets to find that winning entry. Maybe it will be yours!
Thank you for your support, and good luck!
The Nielsen family has started an aftercare fundraising event where each $10 donation gets your name entered into a drawing for a beautiful quilt made by Lisa Nielsen.





Additional Ways to Donate:


Preferred way to Donate by Mail: 
Christina Garrett
PO Box 192
Philomath, Oregon 97370

Selco Credit Union Direct Deposit:
"Team Christina"



Today, I am hopeful~

March 6, 2016

Rebel With A Cause~ By: Eric & Lisa Nielsen



Our friend, Christina, has been fighting an aggressive form of breast cancer for nearly five years. In December, she was told she had only six months to live. Now, she and her husband, Curtis, are in Germany for a month of treatments she can’t get in the US. When they return home, Curtis will go back to work, life will go on, and medical expenses will keep coming. Even with the generous support they’ve received from so many, their resources are depleted and they need more help.

To help Christina continue her extraordinary life, please donate on the link provided or if you prefer, you may send a check, payable to  Christina Garrett: 

Christina Garrett Fund, c/o Nielsens
1537 SW Birdie Drive
Corvallis, OR  97333

For every ten dollars you donate, you will get an entry for a chance to win the quilt pictured here, called ‘Rebel’. We will draw the winning ticket on March 21st, the day after Christina and Curtis return from Germany. We hope to dig through many tickets to find that winning entry. Maybe it will be yours!


Thank you for your support, and good luck!
The Nielsen family has started an aftercare fundraising event where each $10 donation gets your name entered into a drawing for a beautiful quilt made by Lisa Nielsen.




Additional Ways to Donate:


Preferred way to Donate by Mail: 
Christina Garrett
PO Box 192
Philomath, Oregon 97370

Selco Credit Union Direct Deposit:
"Team Christina"

Today, I am hopeful

March 5, 2016

March 5, 2016

Friday March 4, 2016 - Video of the day: https://youtu.be/y-BZNZ0AiMk

My new friend Violeta a patient at Infusio - She is amazing!
After returning home on Friday from a marathon session of treatment, 7.5 hours, I was beyond exhausted physically and emotionally. The scheduled treatment was not unusual, it was the vein my IV was placed in that brought my treatments to an extremely slow crawl. Sure, I could have agreed to have a new IV placed, but my veins are in short supply so I need to make the most of every vein willing to provide an avenue for treatment delivery, even if it is slow. Although slow, things were going okay until the last infusion was placed - it is a bit of a sensitive one, especially with a small vein. As 5:00 pm approached and the last patients were completing their treatment, I said "enough". There was a small amount of the infusion left, but it so was not worth it! I had already taken a Morphine, Xanax, and Zofran about three hours earlier. I was done. I was excited to have the IV removed for the weekend! Free at last. By the time I arrived home, I was very hungry and tired. I had a chance to make a short video, in which I broke down; shortly after I ate some food I fell asleep. I slept through the night until I awoke around 8:30 am Saturday morning. 

On Friday, I had a lovely conversation with Dr. Joe as I call him, my mouth cannot seem to say his proper name -lol. I learned that he is trained to provide some Ayurvedic treatments, he studied in India. This made me happy especially after he offered to provide me an Abhyanga massage next week. As we spoke, it was clear we both struggled to understand each other; the language barrier is a real issue, especially considering the medical setting. Collectively, the staff at Infusio does their best with understanding and speaking English yet there are moments when I think, it would be so helpful for both parties to fully understand the other. For example, there was confusion over the word hurt and heard; two entirely different words, yet when you think about it, they sound similar through the ear of a non-first language speaker of English. 

This is Pia, the office manager - she is always smiling. 
I have been thinking a lot about Infusio, how we were gently dropped in this foreign land, and how we have navigated the unknown. As new patients arrive, especially from the states, I learn of similar patient struggles, some more impacting than my own.

The aforementioned situation of heard vs hurt made me think of a current issue occurring between patients and staff - perhaps issue is too strong of a word, yet I will leave it. The clinic does not provide patients a specific treatment plan of services and infusions that will be delivered during the duration of the four-week cancer program. We do know that we will have access to all the treatments listed under the cancer program listed in the Infusio brochure, it is just not specifically laid out before the patients - like in the US, I am not sure how other countries programs traditionally work. The current protocol of Infusio, as I understand it, is that at the end of the treatment, each patient is provided with an accounting of all treatments received, including the dates. How I mitigate the Infusio protocol is that each day, I ask what treatments I will be receiving and keep track of it myself- this works for me. As the treatment progresses, adjustments to the program are often made to fit the current needs of the patient - for example, I am getting hyperthermia treatments daily to address two different tumor areas on my body. Most patients get hyperthermia every other day.

What is getting lost in translation and why are there unhappy patients? From a therapist perspective, I would offer that most patients are terminally or chronically ill; because of this, there is little control over anything in our lives. Being able to understand and know, as much as possible about the treatment being delivered will provide a sense of peace to many patients. Infusio needs to understand that many patients that seek treatment outside their country of origin, have ran out of options and want to be in control of what is happening to their bodies. We too are researchers -so knowing what is happening is critical. Several of the patients I have met have questioned and gone against Western and European modalities and recommendations at one time or another, acting in what was in their personal best interest. Therefore, it is even more common for “us” the patients to question what is happening with our treatment at Infusio – it is not a bad thing, it is simply the patient desiring to garner additional medical knowledge of current treatment, this is imperative for the psychological, emotional, and physical health of patients.

Infusio’s response is to tell patients not to worry about treatment, that they [Infusio staff] are there to take care of us, make us feel good, and that we need to concentrate on being healthy and getting well. While this is true and quite noble, there are two sides - from a patient perspective, we want to understand what is going into our body, what each infusion is doing, what the side effects may be, and how this is healing our body. Having this information will then provide psychological stability thus allowing for healing. I am not sure if this situation is a cultural conflict or institutional programming issue. Regardless, I truly hope that Infusio grows to have a greater understanding and will consider how patients experience treatment. It is a growing and learning process. My experience is that Infusio is open to patient feedback; systemic change takes time and is typically not immediate. Despite all the challenges, I maintain that the staff at Infusio is wonderful; the environment is bright, positive, loving, and healing.

Although my body is still tired, Curtis and I set out Saturday morning to walk to the center of town. We stopped at Starbucks - they were out of Chai Tea to make a Chai Tea latte, that was a letdown for me. We then set-out in search of eyelashes. After asking several individuals, we successfully located a store called Douglas, that did carry eyelashes! Yippee. I will wait until Monday to try to put these lashes on - they are synthetic not human hair as I am used to. 

On another note, after returning home from my morning walk, I lit a candle and then fell asleep. When I awoke, there was wax that formed on the side that looked like a bald-headed person cloaked in flowing clothing was praying. I thought it was pretty cool. I have not felt very well today; I’m not sure how to describe how I feel other than to say I feel “off”.  I am really glad tomorrow is Sunday and I can rest another day prior to undergoing treatment again. I remain homesick and am so ready to come home! I am halfway done with treatment. 


Today, I am hopeful~


March 3, 2016

March 3, 2016

Save a Vein – Use Your Ass. 

Well this was the theme of today, that along with my wonky eyelashes, that began popping off early in the day landing in the rubbish bin.  I slept okay last night, a bit restless. I awoke ready to take on the day, took a shower, popped on the fake eyelashes that are more like plastic than hair, and bounced out the door.  I entered the treatment center with confidence, that Nadine would find one of those plump veins I have been channeling. One stick – nothing. So we moved to the back of my hand and found success. The first treatment is Ozone Therapy; your blood is drawn out, ozone added, and then blood reinserted back into your body. My blood crept slowly out, we quickly knew this treatment was not going to be possible. We decided to abandon that treatment and I began receiving my first infusion of the day. Nadine then looked at me and says, “you know there is another way”. I thought-  why the sly smile and another way for what? Apparently, Ozone Therapy can be delivered rectally!  I smiled at her and explained I don’t have a problem going up the backside:  Save a Vein – Use Your Ass! Nadine laughed. It was so much easier to have this treatment in the backside and an added bonus; I was able to poop soon afterward. LOL

All the treatments went well and I had a successful day of treatment. I am looking forward to an IV free weekend and only four treatment days next week. Having said that, week three is said to be the most difficult yet I am hopeful I will walk through it with grace and strength. I received a bit of bloodwork back today. The good news is that although the tumor makers continue to increase, they have slowed the rate of increase after only one week of treatment. My blood will again be drawn on Monday, marking two weeks of treatment, I am hopeful for some radical shifts downward in cancer cell activity.

Well, as you can see from my photograph, the eyelashes were placed on as wonky as all get-up, but that was okay. I left them on for as long as possible and just went with it. Perhaps I will find some real lashes this weekend. And if you are wonder, heck yes I am going to attempt to throw another set of plastic lashes on tomorrow morning.  Having a good sense of humor is always helpful and healthy. 

When I arrived back to the flat, Curtis had purchased me a beautiful bouquet of flowers. It was just perfect. I have the best husband.



Today, I am hopeful~

March 2, 2016

March 2, 2016

FP post from March 1, 2016

Things are going well choosing to FB rather than blog, it's quicker. Turn on your Cyndi Lauper music because...well look below. Been sporting this lovely IV protector the past two days. Monday they found a single tiny vein that has lasted two days and hopefully Wednesday as well, then it's time to come out and look for a new spot to start on Thursday.

For some reason my top eyelashes have been coming out, although there is new growth underneath- not sure what that's about, it started prior to coming to Germany.
I can feel my body wanting to rest a bit more as the time goes on. Next week (3rd) is said to be "the toughest" week therefore there is only 4-days of treatment. I'm just focused on getting through each day- right now as I enter the middle of week 2 of treatment. So grateful Curtis is here, I could not do this without him!!!

There is a window by my bed. I often stare out the window watching for a departing plane; I visualize myself flying back home on the plane. I'm homesick.


Today, I'm hopeful~



March 3, 2016

Tonight I was taking a hot soak, shaving my legs as to not be too European when I swiped across the tattoo adorning my left ankle, a lotus flower. I smiled. You see, a lotus flower can only grow out of muddy bogs, but when the flower blooms, it is a delicate perfectly clean beautiful lotus flower. This reminded me that despite all the mud that may be in my pathway - I too shall continue to bloom perfectly beautiful as does the lotus flower; if not for the muddy bog, the flower could not bloom so glorious. We all need some muddy times in order to develop our higher selves and grow into more compassionate, loving, giving, and understanding people. You see I choose to see the mud as my playground for growth. I strive each day to live with a heart of gratitude, to acknowledge my pain and suffering, to let this move through me, to give of myself while living authentically.


You see today was a bit bumpy. Treatment started off painful, with an IV that was ready to give out but my little vein held in there for three days! I became tearful and just needed to cleanse myself.

Tears of sadness.
Tears of pain.
Tears of homesick.
Tears of frustration.
Tears for no reason in particular.

This is okay. A doctor tried to comfort me, but you see, sometimes those around you need to be okay with you not being okay. Let the person have their moment. Check in with them, but then give them space to cleanse their soul. It is okay. At lease for me -  I do not need someone to tell me to hold onto hope or be strong. That's not my issue - I am very hopeful. I am very strong. I am very determined. I just needed to cry.

This is a photo of my Infusio Team - totally planning on rocking out this treatment, finding complete health and beating the odds.

I declare that I shall return to the US from Germany with health and a renewed sense of hope.

Today, I am hopeful~