Chemo News!!!

We've had beautiful snow this week!!! But before it hit it was bitterly cold. On Saturday we took the dogs out for a walk and we all had a blast. Richard throws the ball for them and they run back and forth about 100 times, never tiring of the chase. Mali, of course, is on the constant hunt for water and when she finds it she just wallows in it. At one point she layed in this huge mud puddle and she was totally covered with brown, gooey mud. On our way back to our house she took a much

needed swim in the creek and got all cleaned off. I think you can
see how cold Richard was. That little bald head of his loses alot of heat. He was a trooper though. He and I walked about 2 miles. The dogs must have walked about 10. Oh to have their energy.

The second picture was of a fairy place. I think we probably interrupted some fairy loving because it was still warm. Doesn't it look cozy? I love finding these little fairy places in the forests of the Pacific Northwest. It's quite magical! (Come on everyone; let me have my little fantasies!!!! Richard plays along with me. I love that about him.)

Richard has been off of his chemo since Saturday; however I believe that the side effects have been more troublesome as the week has gone on. The fatigue is bad and very uncomfortable for himn. He had stopped taking the anti-nausea medication because he thought that without the chemo he wouldn't need it.....but it has become obvious that the chemo is still in his system because he is experiencing some nausea. Today we met with the clinical trial coordinator (Cheryl...our Angel). At the end of every 21 day round of chemo Richard will meet with her and fill out a questionaire regarding how the chemo is affecting his daily living. I think our talk was very beneficial because Cheryl was able to spend alot of time talking about Richard's concerns and answering his questions.

They, of course, think Richard is amazing (I could have told them that). They are amazed that he is able to work as much as he is; however can see that that is about all he is able to do right now and she expressed concern that he may be working too much. I believe that after their discussion today Richard will be looking at his work situation to see if he can cut back a little. He is very tired and has little energy for those things that he knows are good for him and that he loves (physical exercise, tai chi, seeing friends and family, messing around in his "he-barn" etc.). I anticipate that he will be constantly reviewing and adjusting his work schedule as he feels he should. He's so good at taking care of himself.

According to the clinical trial's protocols Richard will be INCREASING his chemo this month to a dose that he will stay on for the remaining five months. I'm not sure if he and I are happy about this. I think we're cautiously happy...but worry that the side effects may get worse. We believe that he is so strong and that he's doing everything right. We believe that the "icky stuff" will be manageable.

In other news, I've started teaching again.....and that feels wonderful. I believe, strongly, in the power of creativity in people's lives. I feel so honored that I get to help people learn to play with images, colors and textures. I literally get to watch people's spirits soar with expression. It is so fun!!!!

I hope all is well with everyone. Your warmth, love, thoughts and prayers are so appreciated. We love you all!!! Be happy and healthy!!!!

Love Sherri

Baby, It's cold outside!!!!

We've been having some really cold weather here in the Pacific Northwest. This afternoon when I took the dogs down to the lower portion of our property to play ball much of the grass was still frosty. The dogs love to go down there and play. Our lower field is huge and they could chase the ball all day. I've gotten quite proficient at using the "tosser" and can throw the ball way out there. Usually, when Mali is able to catch the ball, she runs wildly for the creek with Jazzy following her, barking and yipping all the way. Today, even though it was freezing, Mali still headed for her beloved water. She even layed down in the creek and rested for a while!!! BRRRRRR!!! Jazzy will follow her into the water reluctantly and only to steal the ball in order to bring it back to me. I think the pictures are darling. Jamaica simply goes outside to go to the bathroom and then races back to the door. It is way too cold for him!!!


An update on Richard is that he continues to do pretty well on the temador. His last dose, for this round, will be on Friday and then he has seven precious nights off of it. His biggest complaint so far is that there is an increase in his fatigue. He's also is experiencing some wierd symptoms that are difficult for him to explain (maybe more flu-like symptoms???) but he seems to be hanging in there. He does more blood work tomorrow. According to the results of this bloodwork they will decide whether to increase the chemo dose or not. I don't know whether to wish for a dose increase or not.


We both remain very confident that this is exactly what we should be doing. We are still so blessed to be working with the team of doctors that have truly been brought to us. I know that Rick is getting tremendous medical care and that we are stomping the HECK out of any cancer cells that possibly could have survived major brain surgery, intense radiation and a 6 week round of temador chemo therapy.

His little noggin' is still hairless in spots and he has chosen to keep shaving it. I think he looks darling. He looks sosososo awesome in his hats and has taken to rubbing his head all the time. It must

feel good to him. I love rubbing his head. To me it is a treasure!!!

Thank you for your continued support and well wishes. We feel your positive energy and prayers. I hold my friends and family so very close. I don't know what we would do without all of you.



Blessings and love,



Sherri

A trip to Seattle!!!

Today I took a break from everything and went on the train to Seattle with my 89 year old Mother. We went to meet my sister and her husband (Richard!!!) and then to go see my new Great Niece, Nevina Faline. The train ride was pretty magical. Just being able to spend 2 1/2 hours with my Mom with absolutely no interruptions other then the beautiful views was a treat!!!! We chatted and really enjoyed the scenery as the conductor did the driving for us. The train is a wonderful way to travel.

We were met at the station by Jodee, Richard and my other great niece, Ruby (age 3). Ruby is darling and she and I are getting to know each other. I, unfortunately, don't ge to see her often enough. When I do it is always a very special time for me. I love her pure joy and twinkle. I think she and I are kindred spirits somehow. She gets me!!! I love that!

Seeing my nephew Chris and his wife Kim was such great experience. The baby is beautiful. Such a gift to our family. When Chris walked out with her my breath was taken away. She is a beautiful baby....peaches and cream complexion, beautiful eyes and little "rose bud" lips that are so sweet. Our family does make gorgeous babies. I couldn't believe that she was just four days old. Kim looked absolutely beautiful too!!!! She was so positive about the whole experience of giving birth and of now being a mother. She was sosososo gracious in welcoming us. Chris and Kim are both going to be awesome parents. Here are some pictures of my Mom with Nevina and also my Mom with my nephew Chris. In the first picture you can see a little bit of Ruby. I wish I had gotten one of just her. She is quite a treasure.

I've always been so proud of my nephews, Chris and Anthony. They are wonderful men. It has been such a blessing for me to be able to watch them move throughout life. They're actually quite incredible...... They are now working together, along with Anthony's wife Andrea, at their tea shop called Remedy. I love it there and I love the concept that they have come up with. They are amazing.

After we saw Kim and the baby for a while, we all went out for lunch and met my other nephew Anthony (Ruby's Daddy). We had such a good time during our meal. I tried to get caught up with Anthony......and I loved watching him as a parent with Ruby. Wow!!!!! He is incredible with her. So loving and warm, always reaching for those teachable moments, so proud of her.... He is raising a wonderful little girl and I can see him throughout so much of her own personality.

We also stopped at the tea shop to enjoy a cup of my favorite tea (Red Satin) and to see Andrea (Ruby's Mommy). Oh my gosh!!!!! She is such a gifted woman and I was so glad to see her. She is sweet, compassionate and sincere. I love her smile and her confidence. I wish I could be as comfortable in my own skin as she is. She is amazing!!!!

I was thankful for the day. I'm sosososo proud of my family and love them deeply. Sometimes my love for them literally brings me to tears. I can't explain it....but they all are so important to me and don't think I have yet found the words to express that to them. They have all been a wonderful support to Richard and I. I love them so much!!!!

Blessings,

Sherri

A Special Day in January!!!

I wanted to write and let everyone know how Richard is doing on his chemotherapy!!! He began the regime on Saturday evening. I am pleased to announce that he is doing quite well. He has no nausea (with the anti-nausea medication) and has been able to work full-time!!! He is the miracle man for sure. I've noticed that he seems more tired but so far that hasn't interrupted his life in any way. He is amazing! (How many times have I said that since this roller-coaster ride began????? Not enough...that I know for sure!)

Richard went to see Dr. Congdon (no!!! not Condom!!!), his oncologist, this week. The doctor went on and on about how wonderful Richard is doing. I missed the trip (a sick tummy) but Richard's Mom went in my place. Pam also joined them for the visit. She is such a blessing! Dr. Congdon is definately one of our favorites. He is so kind and gentle. I guess Rick's Mom instantly had a crush on him!!!!

I wanted to include some pictures of our Holidays. I know these are very late....but they are so precious to me; I wanted to share them with you. Pictures and memories have a whole new meaning for me now. I need to have pictures of everything to the point of obnoxiousness. It feels sosososo important!

When we arrived at my sister and brother-in-law's house for Christmas Eve Richard (my brother-in-law...I know it's confusing) had his collection of baseball caps on the table for my Richard to choose from. It was the most touching thing!!! Richard Arnold has been collecting these caps for years and wanted to supply my Richard with as many as he wanted for his sweet, little bald head. Richard and I were very touched. Of course one of Richard's choices was the hat with a stuffed Husky Dog Head on it!!!! Do you like my Richard's Santa robe????? He looked quite festive!

Our new house looked so beautiful with all of our Christmas decorations! It truly is "home"!!!

Here we are on Christmas day!!! That's Jamaica in my arms! Doesn't Richard's unhair look great!!! He's so cute....he rubs his head all the time....I do too :)!

Alex has always loved dogs and I think he and Mali have an amazing bond. She's such a little puppy. She loves it when her brothers and sisters come home for a visit.

On Christmas day we had a wild game of "Taboo". I'm pleased to report that Emily and I won the game!!!!!

Here's the Family. What a lovely group we are!!!! Richard looks so happy. I think he is most happy when he is surrounded by all his family.

On the Friday of the week of Christmas Dana bought us tickets to the Omni Cinema at the Seattle Science Center and the Underground Seattle Tour. It was a fabulous day. We all had so much fun!!! It was such a thoughtful and perfect Christmas present. Dana is the head you see between Richard and Emily. He got the short chair!!!

Well....I guess that is it for now. We are anxiously awaiting the arrival of a new great niece. My nephew Chris and his wife Kim are having a baby very soon. She is in labor RIGHT NOW!!! Oh my gosh!!!!!

Our News!!!

We just got home from the doctors....and I wanted to let everyone know the results of the MRI that was taken yesterday!!! First of all...may I say that Richard has the most beautiful brain in the world. The doctor showed us the pictures and I was totally in awe of the sparkles that I could see dusted throughout all of his "matter"!!!! The doctor reported that Richard's brain shows NO SIGN OF TUMOR GROWTH!!!!!! It's clean and shiny and the only things there are the things that are suppose to be there!!!! ALLEUIA!!!!!

We were also told, at this appointment, that Richard will be on the experimental arm of the Temador trial. That means that he will receive chemo for 21 days and then will have 7 days off. On this arm he will actually be receiving more chemo but it will be spread out over 21 days. The first month he will be on the same amount of chemo he has been on....during month two they may bump him up. This regime will last for six months. At that point they will re-evaluate and he could take six more months if it is needed. His next MRI will be at the end of March.

Because he is no longer receiving the radiation Richard will be able to take his chemo at any time during the day. It is recommended that he take it at bedtime with a Zofran (the anti-nausea medication). Hopefully, that will take care of most of the nausea. Our insurance company has OK'd two Zofran a day so if he does have nausea he can have more medication. The rest of the side effects of the chemo are the same as before.

Richard really wants to work full time. Of course that has me worried a little since I know that he struggled with fatigue when he took the Temador before...but my husband is amazingly determined. We'll just have to see how he does. He knows himself very well and I trust that he'll be smart about the amount of work he does.

I am feeling so happy!!!! Again.....an affirmation of the power of collective, positive thinking and creation. I felt you all with us yesterday and today (actually I've been aware of a warm, glowing precence throughout this whole experience)! I know that together we are creating this miracle. Thank you for remembering us and for holding us close.

I believe that Richard has so much left to do on this Earth. He is such a teacher. His tenderness and sensitivity makes him such a powerful leader. His unassuming precence helps people approach him, tell him their own stories and then listen to his words. His belief and faith are incredible. He is smart. He is sososo funny. He is creative. Everything that has happened in his life has prepared him for this experience and through this experience he continues to be a leader and a model.

This evening I am full of joy....joy for Richard's health. I'm going to light candles everywhere tonight....seeing each one of you in their glow.

Love Sher

No convincing evidence of recurrent tumor!

I am at work, but just had to share the good news!!!

From the radiology report of the MRI yesterday

"Decreased enhancement about the margin of the resection cavity of the glioblastoma multiforme in the right temporal region. This indicates resolving postoperative changes. No convincing evidence of recurrent tumor at this time."


Love to All..

Richard

Today is Richard's MRI!!!

I'm taking some time out this morning to write a little entry regarding Richard's MRI which is scheduled for today. We will get the results tomorrow at an afternoon doctor's appointment with his radiologist. We are anticipating absolutely no problems....however.....I know....by now, I feel like I know it intimately, the power of thoughtful creation....and so I would like to invite everyone to join us in creating a positive result from these tests. I've been seeing his brain full of healthy brain tissue and the place where the tumor was is full of twinkling stars...fascinating in their shimmer and beauty. I've also been seeing his body as warm, filled with bright beautiful colors....a place where only "good" can be made. When I look in Rick's eyes....I see such strength and courage. I wish you all could have that quiet strength living with you.... It is an awesome experience living with a man who moves with such an amazing faith. He has no need to question anything.....He just believes!!!!

I have joined an on-line support group. In some respects it has been an answer to prayer for me because I have found a community that really understands the journey of a caregiver of people with GBMs. However, daily, I am also reminded of the ugliness of the world of GBMs and the devastatinng affects they can have on people and their families. Being the caregiver of a brain trauma patient can be very different from caring for patients with other illnesses. When the brain is involved there are many nuances that are there....that many wouldn't even notice....but that are glaring for the patient and the caregiver. Assisting the brain trauma patient is an art (I am learning!!!) and I'm so relieved that I have found a place where I can ask questions, gain knowledge, receive support for my struggles and talk openly with people who understand.

After reading so many testimonials from the caregiver group I have become aware of all the many miracles of our own journey. Most GBMs truly are not so limited to one chamber of the brain....and typically, after surgery, there is tumor left or there is significant brain damage where the person must recover from many serious deficits. Richard was so blessed in many ways....his tumor was isolated to his right temporal lobe, they got it all, plus margins all around it, he came away from the surgery with minimal deficits, we found an amazing surgeon and subsequently a fabulous radiologist and oncologist, he qualified for a great clinical trial, and he tolerated the radiology and first round of chemo with only some complications. All those things put him in an excellent, statistical place.

Our job now is to face this next round of tests and then move into the heavier round of chemo with the same strength and determination.....but mostly with the same mindfulness and thought. We can do it!!!!! At times it feels daunting....but then I remember the MANY blessings that have come to us, the things we have learned, the grace that seems to blanket our home and the beautiful angels that have stuck by us....and I know we can do anything.

Thank you again......you are our light!!!!! Keep shining and loving!!!

Love Sherri