Amazing

I know that most of you have read Richard's post from this morning...but all morning I've been hearing our blog calling out and I felt like I wanted to post...but also felt a little frightened to post. Right now, I'm trying desperately to keep my wits about me because I know that we will be continually analyzing lots of information over the next two weeks....and I have to be clear and organized. Also...I know that I want to take loving care of my beautiful husband...be totally present with him, savoring every moment of our time together. That will take alot of emotional energy...energy well spent....believe me....it's an honor to stand beside this man through this experience...but I have to remain strong.

The news, yesterday, was truly devastating for all of us. Listening to the grim details of this recurrence was difficult but the worst part was, of course, telling our children, our families and our precious friends. We were able to move through it....together and we are doing O.K....one step at a time.

As we lay in bed last night....we finally cried. It was so wonderfully horrible.....so perfect. We had kept it together until we were safe...and then finally we were able to hold one another and let our hearts open with the pain and agony that has to be controlled most of the time as we march forward in this war against brain cancer. I don't know if my heart, my mind, my soul, my spirit has every hurt that badly. Now as I write this I really don't know if this pain can even be described at all. But laying, safely, in my husband's arms...I knew that I wanted to be no where else on earth. Even though the pain and sadness was horrible, I knew that by doing this I was going to be fine.....

Humorously....I know I am strong and capable...amazingly so....and I try to be BIG and TOUGH. Sometimes I can get pretty cocky about my strength through difficult situations. But I always have these barometers in my life that seem to keep me in check. I just went in to check my blood sugar before I eat lunch and it was over 400 (normal is 75-100)....oops. In my haste to get to the cancer center this morning...for our last appointment with the clinical trial nurse.....I forgot to give my long-acting insulin injection.....that and the stress make my blood sugars very brittle. HMMMMMM....I can pretend....but I always have reality smacking me in the face. I guess that on some level that is good.

My love today is so very close....love for Richard, my family, my precious friends, my dogs and the cat that really doesn't like me much.....I'm just full of love. I am touched by the care and warmth that is being sent our way....I can literally feel it, deep in my soul. Please take a moment and touch the ones you love this weekend....do it for us!!!! Let our experience remind all of us about the importance of love.........

I am holding you all very near.

Blessings,

Sherri

MRI report , new challenges

It was a difficult day. The 4/22 MRI does show findings consistent with recurrence. Dr. Congdon is hopeful and says there are some good options for treatment. His office is setting up appointments with Cyber-knife and neuro-surgical offices at Swedish in Seattle. I will need different chemo-therapy and will be dropped from the RTOG 2025 clinical trial. It apparently was not working anyway.. The Temador does prevent tumor growth in some people, but apparently not all.

We thank you all for your continued prayers and support and will keep you posted on developments as they arise.

With Love

Richard

Today is MRI day!!!

I have been suffering from a horrible case of PMS (pre-MRI-syndrome)....which means...not sleeping well, having trouble with motivation, very emotional, craving fish-n-chips, spending long moments staring at Richard, spending long moments doing absolutely nothing and participating in lots of household wandering. I know it will be over soon....but right now soon can't come fast enough. Richard's MRI is at 3:30 followed by some more bloodwork and then an evening, home together staying as busy as possible.

What a ride!!! That's all I can say. This past month has been more difficult than the others which I know is due to the "enhancement" on the last MRI and the concern that has followed. Richard has been, I believe, feeling more down.....well.....I know he has because he has said so. Maybe we have come to a place of acceptance...especially the acceptance of what a "long" journey this is going to be and an acceptance of the challenge to keep moving forward in the manner that we both want to. Looking back....it has been absolutely exhausting for both of us....but especially for Richard.

I wish that "loving" was enough....if that were so...we both would be sailing through this with ease. But sometimes the fear, the lack of clarity, the inability to make plans, the way this has made us sosososo different from other's....sometimes our love isn't enough.... I've come to accept that nothing will make these moments of struggle easier.....just trusting that it will pass is what gets us through.

Richard is so tired...from the effects of the chemo, the radiation and even,,.still...the brain surgery. He is weak, has lost weight, is mentally weary...and seems to cherish those moments of quiet. But yet I feel his frustration with his lack of stamina...his inability to do all the things he use to do. I try, desperately, to help pick up the slack...so that maybe he won't notice the things that have gone "undone"....but I, too, seem limited these days in the area of energy. He still remains such a teacher.....He sighs...and then reminds me how important contentment is as part of this journey. We've done enough, we have enough, we are enough.......

Pray for Richard today....as he travels into that scary machine....and has his picture taken. I feel you loving us....that is what truly is giving us strength to continue. We love you all....so much......

Love Sherri

La la Monday, Monday!!!!

Look at these precious pictures. My nephew Christoper and his beautiful wife Kim stopped by on their visit to see my sister in Blaine. They brought Nevia...our great niece...and Emily, Richard and I ooooohed and aaaaahed all over her. It was a magical visit. My nephew and his wife are such awesome people. I am very proud of them. I know how busy they are. It meant so much to have them take the time to bring Nevia to see us. My heart was so full the entire time they were with us. Watching my nephew tend to his family was quite moving and his wife is a tender, sweet Mommy who so is refreshing, calm and confident.

And the baby...I cannot tell you how magical it was to have a beautiful, wise baby in the house. She is amazing (I know...all babies are amazing...but this one is pretty special). I can't even begin to share with you the emotions I felt when Richard picked her up and began playing with her. It was as if I was watching one wise soul speaking to another. She saved all her grins and giggles for Uncle Richard and we all watched in awe. Emily was the photographer....and I think she caught the absolute miracle of the moments with Nevia. It was a blessed afternoon with them.

As most of you know....I spent four days away at an art retreat called ArtFest! This is a huge event (600 in attendance from all over the world) and I had made reservations to go way before Richard got sick. I won't write about the details of the time there (Maybe I will write all about it on my other blog) but I must tell you about "the going", my reasoning and my feelings while I was away.

I am learning the importance of taking care of myself as we progress through this journey. To that end I felt like it was almost mandatory that I go to ArtFest. I felt like I needed to immerse myself into something totally different than what has been going on in our lives recently. The decision to go was not an easy one.......and up until we left I still was feeling unsettled.....but at the same time I knew it was important for Rick and I to spend some time apart. The message to Rick was such an important one...."I believe that you are well....and that you can take care of yourself, our home, the animals, etc..... I see you as capable and strong." That message was equally as important for me.

I had a blast at ArtFest. I was surrounded by loving friends the whole time and I met many amazing people. But....whew.....I missed Richard, our home and our family. Dana and Emily were with their Dad (thank you guys....I love you both so much!!!!) and when I spoke to Richard I could tell that he was having a great time.....but oh my gosh....I missed him, them!!!! I loved my time away. ArtFest is known to be life changing and exhausting. I came home very tired but very anxious to put my arms around my husband. The homecoming was heavenly.

I will write more later.....lots to share....but for now the sun is shining.....Jamaica is barking at the door and I want to get this posted.

I love you all! Blessings!

Sherri

Scary Visit with Dr Congdon

Friday was a little scary, as we reviewed the MRI results with my Oncologist. In the report, as Sherri noted in her last entry, there was an area of "enhancement" noted in this MRI which was not noted on the previous MRI report in January,.. Dr Thompson, remembered that the same area was noted on the post-op MRI last October, so he had an addendum added in which the current area was measured and compaired to the post op.. and it is smaller and less enhanced now than in the Post-Op MRI.. However, Dr Congdon does want monthly MRI's done for at least 3 months to monitor this spot..

Both physicians, Sherri and I all feel feel that it is nothing to worry about.. just some scar tissue from the surgery or .. now enhanced because of ??????.

Live On! Love On! Happy Spring!

P.S. It snowed 3" here in Bellingham Saturday.. March 29th.. !!!
Love to all

Richard

MRI Results!!!

Richard and I just got home from seeing the head of the clinical trial manager (Dr. Thompson, Richard's radiologist) and his assistant (Cheryl....who is really the manager :)!!!). We were given the results of yesterday's MRI!!! The MRI looked very good...excellent in fact!!!! The area of enhancement that was noted in the last MRI looked even smaller and there is no new tumor growth. We are breathing a huge sigh of relief and total joy!!!!

We both went into this MRI feeling like everything was going to be stable and fine....but no matter how strong our belief is....I think we both still worry.....I know we both worry. Faith is such a hard thing to maintain...even when your belief is so clear and strong. And....as our journey continues (now almost seven months) the worry is always close.

Yesterday, as they took Richard through the door to the MRI machine, he turned around and looked at me, an eye piercing look, for just a moment. I smiled back trying desperately to send him positive assurance as he again entered that big, noisy tube and went through the procedure. It's amazing...how I still get choked up as he bravely faces each of these hurdles. I have such pride and admiration for him as he continues through this journey. He is my warrior.

Todays blood work showed some concern regarding the lymphocyte levels. This is what they really watch over the course of the chemo. He's having to go back in and do some more bloodwork.....He says, "Oh well....another poke". We see the oncologist in Everett tomorrow so we will have more news about all that then. They really watch all his bloodwork very closely. I am sosososo glad. We have an amazing team. I am so thankful.

Richard reported to the doctor today that he was feeling more tired. He also said that the nausea levels have required two anti-nausea pills on some days. He has loss around ten pounds....his appetite has definately changed. He's only working about 30 hours a week at this point...which is incredible compared to other chemo patients. On the whole he is quite the specimen if you ask me.

So...we march forward....gleaning as much from this experience as possible. We are thankful for so much. I think we are getting better at "living" with our situation and we're both making good choices in honoring our committment to loving one another, being in the present moment, getting rest, exercising, eating well and remembering, at all times, our many blessings.

Thank you for continuing to hold us in your thoughts. Everyone's prayers and beliefs in Richard's total recovery are working miracles here on East Maplewood. We carry your light with us daily.

Love Sherri

RV

Sherri and I decided to take a little get away trip in our RV (Thanks DAD). It was the second time that we had used it, the first being last September just a couple weeks before my diagnosis. This did not enter my mind throughout the entire weekend and we, along with Sherri's sister, Jodi and her husband, Richard enjoyed a real RV weekend at Padilla Bay. Padilla bay is across near Anecdotes (and an oil refinery) and jut 30 miles from our home in Bellingham. We are lucky to live in such a beautiful part of the country. We also saw several eagles, one in a tree about 30 feet away, and a family of five soaring high overhead. We had wonderful walks on the beach and to a nearby wildlife preserve. We ate delicious food and are looking forward to many more get aways this summer. Here are some photo's from the trip.

Love

The days and weeks go flying by. It's so hard to believe that it has been almost six months since Richard's diagnosis. It seems like yesterday when I was sitting in Dr. Goodman's office hearing that my beloved husband had a brain tumor. I think, maybe, just a little bit, I may be coming out of the shock of the news and the events that followed.

It has been such a hard time....so challenging in so many ways........... Yet....it has also been such a blessed time. How can that be? And is it those two extremes that make me often feel like I am not part of this world anymore....as if I can't relate.....as if I don't fit in? My main teacher has not been the brain tumor....or the removal of it....but my Teacher has been Richard and also my own inner heart....the tumor has only given me a reason to listen and pay attention to every detail.

Richard is a natural teacher. He teaches by example....always..... He moves and acts with an awareness of humanity that is absolutely amazing. He truly is always asking....what would love do in this situation...and given that parameter he moves, makes decisions, acts with "light". I am often standing in awe of his depth of compassion and sensitivity....and in the congruency between his beliefs and his actions. To say I love him seems like such an understatement.

I have learned, too, that I am strong and capable. I'm not afraid of loving anymore....not just Richard....but truly moving through my days taking risks, listening, looking people in the eye, letting myself feel their own struggles, triumphs, happiness and fears and trusting that I have an inner wisdom that I can trust and rely on. All my fears are slowly growing smaller....and my ability to be genuine seems to be taking over. It isn't easy.....sometimes I am so overwhelmed and frightened I feel totally frozen....but if I find my heart, my soul, my "being"...I find the way...just for me....no one elses way....but my own. And I have to believe that that is right.

My favorite times, of course, are times when Richard and I are together...feeling easy in our experience.....talking, laughing, telling stories, making plans.....but mainly I love listening to him and being moved by his wisdom, his true loving nature, his committment to creating a reality of love, nuturance and health.

There are always the moments where my breath is totally taken away by the thoughts that someday I may have to experience a life without this man. I become frozen thinking that I may not always have him beside me. The fear is huge, dark and cold.....and so intense. And I don't believe that those moments will ever grow easier or even lessen in their occurence. I'm coming to accept that they are part of this total journey that we are on.

Sometimes these thoughts make me afraid that I'm losing my focus, my strength....but I'm learning that it is because of the depth of my strength and love that I am led to these places and that I will be OK. I'm learning to let myself "feel" it all....the good and the bad. I guess I'm learning to believe that you can't have one without the other. My breath seems to get me through these times....I can't run fast enough to get away from these thoughts....but I've become aware that sitting with them is not all that bad.

I love "tending" to Richard....the little things....getting him water, helping him take off his shoes, bringing the covers up around his neck when he has the chills, pulling his little hat down over his ears so he stays warm. I need to touch him....just simply.....my hand on his cheek, reaching out and touching his arm at night...not to wake him....but just to feel his warmth and his presence, holding hands, sitting in the chair with him as we watch TV, nuzzling his neck with my nose taking in his wonderful smell, rubbing his little bald head, rubbing my foot along his leg. It's these moments that my hands are the most tender....loving, nuturing, speaking...saying I love you. I've never been aware of that language....I am thankful I am learning it now.

We are doing well as we become more familiar with this journey. We are learning how to live with chemotherapy, bloodwork, anticipated MRIs, antibiotics, lots of pills, wierd food cravings, a new quietness in our lives. We continue to be so thankful for all of you.....we feel you thinking of us....you are part of our strength.

My love, Sherri

Another day.

A quick update for you.. I thank Sherri for keeping up the blog, her writing is so good. I am now in my 3ed cycle of Temador, 200 mg day for 21 days. I am scheduled for a MRI on the 26th of March, and feel very confident that it will be clean with no evidence of regrowth.. seem that with most GBM patients, they are fine as log a they keep taking the Temador.. I am getting a little carry over nausea during the days sometimes, by my Zofran works excellent for that (as it should for $25.00 a tablet. I nap in the afternoons, and that along with walking if helping the fatigue.. (Sherri and I and our dogs did 4.5 miles on Saturday)

My love to all and keep those positive vibes coming.. they really are working!


Richard

The second round of chemo is over!!!!

Hello Everyone!!! I hope this post finds you all healthy and happy. The sun has been shining and that seems like such a blessing. We've all made it through another winter in the Pacific Northwest. I noticed tonight that it was still light out past 5:30. Oh....I felt so happy!!!!

Richard finished his second round of chemotherapy last Friday evening. This time, during his week off, he continued taking the anti-nausea medication and he has done much better than last time. However.....he still is extremely tired and suffers some of the other side effects of the chemo.....cold chills, foggy brain, lack of appetite. He and I still feel so confident that this regime is the right one....and so when we start feeling down about how he feels we just remember the little "pac-men" (our chemo visualization that we've come up with) traveling around his brain searching for and chomping up any little cancer cells that may have survived through surgery, radiation and chemo.

Because of his suppressed auto-immune system (another chemo side effect) Richard has now caught a nasty bug that has morphed into strep throat!!!! I just can't believe it....chemo AND strep throat!!! That just seems so wrong. Our doctor immediately (today) put him on huge antibiotics....the big guns....so hopefully he'll be feeling better soon. People who take Temador (his specific type of chemo therapy) are very prone to lung infections and so he's been on a low dose antibiotic ever since he's been in the clinical trial.....but apparently those nasty little cold/strep bugs weren't deterred and were able to infect him anyway. Boy are they sorry now!!!!

The hardest part for both of us is to maintain our focus. Given our belief that our thoughts create our reality we try desperately to continue to believe that Richard is going to be a long term survivor of this brain cancer. However....we both are very aware of the seriousness of his disease and of the sad statistics that are published. We definately hold each other up....as daily we read about sad cases of glioblastoma, level 4 brain cancer. We remind each other of the successful surgery that Richard had where ALL of the tumor and margins were removed. And we remember the fabulous team that has put together the radiation and chemo therapy protocol for Richard's specific case. In addition, we hang onto the words of all of Rick's doctors who have told us that he is in the best possible statistical group. And then we look into each other's eyes and remember how much we love each other and how we have so much more to do here together. Three short years of marriage is not enough. We constantly assure one another that truly our hearts tell us that Richard will be a long term survivor!!! That's exactly how we get back on track. Exactly!!!!!

This week has been particularly difficult because we heard about a well known neurologist who lost his battle with GBM. This man was on the cutting edge of glioblastoma research, working on a new type of chemo therapy that is looking at using vaccines in treatment. Amazingly and sadly after years into his research he was, himself, diagnosed with a GBM three years ago. He had two years of tumor free MRIs after a vert aggressive treatment protocol of surgery, radiation and chemo therapy. During the past year he experienced tumor regrowth. After a valiant fight he died earlier in the week. This news hit us hard. It has given us time to, once again, evaluate our decisions and our tactics and again we have resumed our "walk in faith", holding one another's hands tightly.

My angels.... please continue sending Richard prayers of healing light. He is treasured by so many.

Love to you all!

Love Sherri

A sunnny day in Bellingham!

The sun is shining brightly and the skies are an amazing blue!!! It seems as though Spring has arrived. That is exactly how people in Bellingham react to our first sunny, warmish day. Everyone goes outside, puts on their cropped pants, dusts off their gardening gloves and gets ready for Spring. It's quite disappointing when the sunshine is just a tease.....but for right now we are all playing outside, spreading our arms wide and letting the rays sink into our pale, white skin. It truly is beautiful!!!

Since the weather man forecasted Sun for Sunday Richard has been planning a short motorcycle ride. He's been so excited about it and I've been praying all week that he would be able to take one. I got a huge catch in my throat as I watched him come up the driveway on his bike....with this huge, beautiful grin on his face. A few short months ago I was so frightened that he wouldn't be able to ride his bike again......but today he didn't skip a beat. He was gone for about a half hour and he came in the house smelling of fresh air and leather. He is my miracle man for sure.

We went to see Dr. Congdon (the oncologist) on Friday. Richard had a particularly rough week with the side effects of the chemo. He seemed to really struggle with fatigue and cold chills. He spent alot of time resting.....and also talked alot about how to do this chemo thing while still maintaining some control and normalcy.

I chose to stay close to home during the evenings and even canceled my journaling class. He didn't really need me....but the side effects, at times feel huge. There's absolutely nothing I can do but remain close by, trying to feed him, getting water, blankets, and just being there if he wants to talk. Those are the moments I treasure....the times we just talk. I will never tire of our conversations....about creating our new normal, about our plans for the future, about house projects, about how to cope, etc. Those times are when I know we are a true partnership.

We continue to feel the prayers and thoughts of so many people. Thank you for thinking of us.

Love Sherri

Time goes on and on.....

Before I know it....weeks have gone by and I realize that my writing has been ignored totally. I feel so strongly about keeping everyone informed of Richard's situation....you have all done so much for us...I feel like I want to communicate with everyone as much as I can. But then glorious life seems to happen, time seems to fly and my days get all lumped up. It's such a busy world....even fighting and beating brain cancer can't seem to slow it down!!!

I sit here, at my computer, listening to the rain and also listening to my precious cat's purr as she sits next to me nudging me to keep working and to take intermittent breaks to pet her and take a deep breath. My animals seem to remind me of the important things...stopping, attending, breathing, looking into eyes not just looking at whole faces. They often seem to be my best teachers. I am grateful that they don't lose patience with my stubborness regarding learning to slow down and do the important things.

Richard is laying down....he takes lots of time during our weekends to rest. I am so pleased that he feels well enough to work as much as he is. I know it is sosososo important to him. I support him everyday as he walks out that door because I know that at work he feels successful, important, needed, valued. All of that is so wonderful for him right now. But I am also so thankful for our time at home together. I keep myself busy in my studio while he rests....but his spirit seems to fill the house....I can touch his presence.....it means the world to me to just have him near.

I feel teary today as I write this...I don't know why...honestly...the tears don't seem to have a logic or a predictableness to their arrival...they just come. When I'm home and alone...I let them come. I've never let that happen before. But this time, now, it seems so important...that I even welcome my moments of reflection, tears, fullness, emotions. Slowly, over the past five months, I have learned that the tears will stop and that often I will be left with a re-welling of strength and focus. That is good. That is something to not be afraid of.

On the whole I think Richard is doing fabulously with his chemotherapy. He is starting his second week of his second month and the side effects seem to be tolerable. The fatigue is the hardest thing for him to deal with....mainly because it is such a different type of tired for him. But he is learning that resting, napping, sitting does help....and so he is letting himself do that. His appetite has also been strange lately...nothing seems appealing at times. But I can be a very creative cook....and his Mom tempts him with her precious comfort foods. Between the two of us....Rick is eating!!!!!

The biggest news for Richard is that he's joined a motorcycle group called, "Bikers Fighting Cancer". At first Richard was hesitant....but he was invited to one of their meetings and he has continued to communicate with some of the members. They are so beautifully supportive...I can't believe it. I am so thankful for their tender e-mails and words of encouragement. They're wonderful people and would drop everything if Richard needed them. They've asked Richard to take a motorcycle trip with them in August to a HUGE motorcycle rally in Sturgis, North Dakota. I believe that Richard is planning on joining them. I think that is sosososo awesome!!! (No I will not be going with him......I've ridden across Montana once on a motocycle.....my butt and I will NEVER do that again!!!! Anyway....this feels like a guy event!!! I'm thrilled for him!)

Here is a picture of our sweet cat, Mia. As you can tell....our life here on East Maplewood is pretty comfortable for all of us!!!!

We love you all!!!!

Blessings, Sherri

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

Christmas 2008

Richard and I spent the week before Christmas suffering with the Noro Virus!!! Man.....that was a meaningful experience for a husband and wife to share. I am way too cute to have something as ugly as this virus. Richard, of course, handled it with grace while I had to whimper around for a number of days....whining and extending the virus further than most. It seems that with my diabetes any kind of "illness" hangs on with me. Noro and I got way too close, however...Both Richard and I were very glad to see her go!!!!


Our son Alex turned 24 on December 21st!!!! We were able to go over to Orcas Island (such a beautiful place) to visit him for the evening of his birthday. Since we had to bring Noro too, our visit was short.....but we had sosososo much fun with Alex. We were able to take him and his friend Will (a wonderful guy) out for a fabulous dinner at Deer Harbor and then just spend the evening with Alex....seeing his new computer shop and the house where he lives. He seems so happy and centered. He has a new job at the Orcas Market and is settling in to all those new responsibilities. It was a wonderful visit.

Christmas Eve and Christmas were very special. This year it felt sososo important to have a GREAT Christmas....which can often lead to a lot of stress. Being sick helped me realize, once again, the importance of relationships, family and friends.....and how trivial most of the things I worry about really are. We didn't bake cookies, go way out on food preparation, decorate beyond belief or buy tons of gifts. We just didn't have time. And....guess what? We had a beautiful time with our children and our families....even without all the silly trappings. What a wonderful lesson for me.....Again.......I am being blessed, constantly, by lessons and love.

Richard and I have spent a lot of time, during this Holidays, remembering all the beautiful people who have helped us during these past four months and even more time being thankful for so much. We both share a new warmth which is a result of the discovery of true family and friends. We often sit in awe of the light that has surrounded us. Sometimes I look at Richard and he seems to be glowing....I understand that luminescence as pure love....within him, of course.....but also given to him from others. He is at his most beautiful at these moments.

I know this is short....but we have very early bedtimes here....and Richard has already started the nightly routine. I love to join him and "snuggle" close......but I did want to at least check in and let you all know that we are doing fine and loving everything and everyone with passion. We hope you all had a Merry Christmas and that you are preparing for a special New Years celebration. I promise.....I will write more very shortly!!!!

I Believe!!!

I just read a beautiful entry from a mother on my on-line brain tumor, caregiver support group. Her son (in his thirties) was diagnosed with a brain tumor in 2000. Today was the day of his six month MRI. She's been posting, prior to today, about her anxiety and fear regarding this test. Many have written her back, assurring her, encouraging her, sympathizing with her because waiting for the MRI results, I guess, can be excruitiating. She just wrote the group and told us that Kevin's MRI was clear...no reoocurrence of any tumor growth. I immediately was brought to tears....with joy for this courageous family...but also with such hope and belief for my own husband who is bravely, fighting this battle. I believe that Richard will be one of those survivors!!!! I believe, I believe, I believe.

Our days without Radiation and Chemo!!!

These past two days have been very interesting for Richard and I. Since chemo and radiation have stopped we seem to have sosososo much more time on our hands. We're also in the thick of the Winter Darkness here in Bellingham. That means that basically by 3:30 it is dark and pretty unsafe for me to be outside doing anything by myself. It's at this time of year that I always begin to feel a little claustrophobic! Obviously...I need to get ALL my inside projects lined up! I have many!

Richard is feeling pretty good. He still complains of being tired but he is working six to seven hours a day and seems to be plugging along. Work is so terrific for him. I know, that while he is there, he is surrounded by people that love him dearly and that they are watching out for him. Richard is so darn lovable. He is very close to many of the people at his job. I am so thankful that he is able to continue doing as much as he is.

I'm doing O.K. too!!! I'm settling into a new rhythym here and asking myself what my near future may look like. I think from the moment that I heard Gittle (our doctor) say the words brain tumor, life as I knew it, changed forever. I, myself, changed dramatically. I never want to forget the importance of this experience and I want to give it the attention it deserves. I've always had to learn things the hard way....well I believe this brain tumor has been the boulder that I needed to make some positive moves in my own life.

This is all still unfolding and I'm not sure, yet, what the changes may look like. I suspect that to most they won't even be noticeable but for me it is time to move in a more purposeful, thoughtful direction. I have learned so much since this all began....maybe I was learning all along...but this experience definately solidified a great deal for me.

People ask me what I have been working on, creative wise, during these past few weeks. I wanted to show you some pictures of some jewelry I've been doing. The colors, twinkle, and movement brings me great joy. With my eyesight, people who have seen the bracelets have asked me how I do it. Between my numb hands and my fuzzy eyesight it can be difficult...but with lights, etc. it works out and I'm having a blast. The model is Emily. She has beautiful hands and shows the braceletys off beautifully. I hope that you like them.

This is a busy time for all of us. I love the Holidays but it's so easy to get totally overwhelmed with all the shoulda, woulda, couldas. We have so much to be thankful for. This seems to be the perfect time to count our blessings. That's what's really important.

You are all very close. I love you!

Blessings,

Sherri

Holiday Break

Break time from the chemotherapy comes with the finish of the radiation today. It will be a relief to not have to time my day around the chemo / radiation routine. Dr Thompson told us that the effect of the radiation will continue for a couple weeks after treatment.. we'll see. In January, I will re-start the Temador for 6 months with the start of the Clinical Trial after a follow up MRI on January 2ed.

Blessings to you and I wish you the brightest of holiday spirit and love.

BRRR!!!! Baby it's cold outside!!!

It is sosososo cold here!!! Winter is fast approaching (technically on the 21st...my sweet boy's birthday.....but it feels like it is here right now!!!!)! The best part about the cold is that my dog poop picking-up duty is much easier when everything is frozen (probably TMI...sorry).

I wanted to catch everyone up on some important happenings during these past couple of weeks. First....it was Dana's 25th birthday this past Tuesday. We all went out to dinner last weekend (during the big snow!!!) and had a fabulous meal at Nimbus. Then we came home and continued the celebration with a confetti, boxed, birthday cake (Dana's choice) and ice-cream. It was a special time for all of us. The meal was amazing!!!! Here's some pics.

This is a picture of Dana, his Mom and I. Isn't Dana the cutest thing? I am so proud of the kind of wonderful man he is. He has been an amazing support for his Dad and I. I am so blessed to have him in my life.

O.K. Here's precious Jason chowing down on a raw oyster!!!! Yes....I said a raw oyster!!! We all watched in fascination as he chewed this puppy with great delight! He's always willing to try anything!
Emily and Jason are such a great looking couple! And what's so great about them is that they are so nice! I'm always touched by their sweetness.

Yesterday we went down to Everett to have dinner with Richard's sister, family and friends in celebration of her 50th birthday. We had a wonderful time and dinner was yummy. I worried about Richard driving down there after a long week....but as always, he was a trooper, and we had no problems. It was a nice evening for us. I love these pictures of Richard showing off his bald head. It was darling watching him and his Dad.

This is a picture of Richard and Pam with Vicki and Don. These four have been close friends since childhood. I love listening to stories about their escapades. It was nice that they could all be together for Pam's birthday.

As Richard has told you, Monday is his last day of radiation. It's hard to believe that 6 weeks have already gone by. Last week we saw both the radiologist and the oncologist and have now been prepped for the next phase of Richard's treatment. He gets a month off....which we have been warned may still be difficult, physically, for Richard since the effects of radiation will continue for quite a while. But we're both looking forward to no appointments, no chemo., and of course, the holidays!!!

I will miss the Cancer Treatment Center (that is so wierd but I will!!!). They have been so wonderful to us. Last week I went in and watched Richard's treatment. That was awesome!!! My poor baby!!!! It looks so scary. They tried to explain everything they were doing and then took me to the master computer as they did the treatment. They have Richard on camera the entire time and he didn't move a muscle. I don't know how he has done this for six weeks with such courage and grace. He trully is my hero.

The treatments (both chemo. and the radiation) have had their physical affects on Richard. The nice part about the whole thing is that it's all been cummulative so it's been slow; however he has struggled. What I notice is that when he gets tired, usually in the afternoon, he becomes very quiet and listless. He seems to get easily confused and has difficulty putting his words and thoughts together. A couple of weeks ago I expressed my concerns to the radiologist and he increased Richard's steroids (which the doctor said was typically needed during brain radiation). That has helped immensely with all of the negative complications; although it has caused some issues with sleeping, anxiousness and the "hungry horrors"....but he's absolutely a total miracle.

Looking back, I am still so shocked that all of this has happened to us. We often find ourselves talking about how amazing all of this has been. But....there have been many blessings and so many very special moments...especially between my husband and I. I am so thankful for this time together. We are so aware of the preciousness of this awakening. Truly, I leave nothing unsaid. I never stop myself from touching him. I never hesitate to look deeply into his beautiful eyes and I never stop thanking the Universe for such a beautiful partner. On the day we were told about Richard's brain tumor my life totally changed. I am walking with a new view and with a new sense of my own clarity. That has been one of the many blessings.

I am thankful for all of you. I feel you out there! Thank you for standing beside us.

Blessings,

Sherri

Radiation Done!

Here it is, Thursday evening, and I am realizing that I have only 2 more radiation treatments left! How great this will be!. Not that they have been terrible, in fact, I have been pleasantly surprised at how well I have seemed to tolerate them. I have had moments of extreme fatigue, some Minor skin irritation, an hair loss at the sites, but generally it hasn't been bad. Everyone at the radiation center are SO nice, it makes it kind of nice going there just to see them.

After this phase, I will continue on the temador for a 6 month cycle. The dose will be determined by which are of the clinical trial I am selected for.. It will really be simple with the need to take only a few pills a day. I will find this out next week. It will be either 5 days of high dose chemo followed by 23 days off, or 23 days of lower dose chemo with five days off.. So this experience is in no way over, but the gravity has lifted, I have healed and I look forward to the future with optimism and strength.

I have so much thanks and appreciation for all the wonderful friends, family and co-workers that have been here to support me through this last couple months.. I would especially like to thank all the wonderful women that have been a pert of Sherri's art life and the Stampadoodle crew. All the members of the SAS group have been SO wonderful and generous I can hardly find words to express my gratitude. I do have a strong spiritual faith, and I know that you are all angels come here to lift my spirit and the spirit of those whom I love above this darkness that seemed to swirl in from nowhere. you all have been a light in the darkness for Sherri and I during this time.