A toothy kind of day!!!

Hello my beautiful friends!!!!

You would think that someone who has had three craniotomies and two chemotherapy regimes in the past year would be safe from anything else bad that lurks in the world....but my poor Richard has a horrible tooth ache and I just can't believe it!!!! Dentists aren't real excited about working on people who are on chemotherapy....because of how susceptible they are to infection....but...... On Monday when we were down in Everett for Richard's chemotherapy he spoke to his doctor (yes, Dr. Congdon-no not Condom) about his suspicion that he had a bad tooth. Dr. Congdon gave him the go ahead to see a dentist since his blood work looks so good (his white blood cell count is normal!!!!). I immediately called our dentist and she saw us today (fnally...since the pain seemed to be getting worse daily). After x-rays and an exam we've decided to pull one tooth (since it already has had a root canal and a crown) and fill a big cavity on an adjacent tooth. YUK!!!! So tomorrow we are seeing an oral surgeon and after the tooth is pulled and somewhat healed then our dentist will take care of the cavity.

It's such an amazingly normal thing to happen to someone our age (don't you hate that!!!) but I really think that people who are dealing with cancer, especially brain cancer, should be exempt from needing dental work at all. I mean a tooth ache happens in his head....close to his blessed brain....and I ask you how much more can one little head handle?

What I must tell you is how sweet Richard was with all the staff at the dentist office. He just shines...glows....and you can tell that people see his specialness immediately. Whenever he meets someone he gently takes their hand and just holds it and then really looks at them. I stand back and just watch. People, who are usually so busy and hustling around, just stop and look at him....it seems like a pause in time. I am awed by his spirit and of how he envelops people in his warmth. He is such a blessing to so many.....even so many who he hasn't met yet.

Sometimes I wonder how such a beautiful man came into my life. I have to admit....initially I didn't see the glow...but I had a yearning to keep seeing him....that was clear to me....very clear. As time has gone on I have slowly learned of his many gifts. When we decided to live togather I knew that there were many differences between us...but I sensed and had experienced that with him beside me I could truly discover "my best self". It was a clear expectation that we both were done making relationship mistakes.....we were sure of that. I knew that Richard truly loved me and that I truly loved him.

Cancer has deepened my awareness of the miracle that "he and I" are. Cancer has given me the moments to stop and just watch. It has taught me to be quiet...to listen...and to observe. These have been struggles for me before...now they are my blessings. Richard is truly my teacher. Watching him elegantly travel through the maze of serious illness has been an awesome experience. I watch people pause....in his genuine warmth. It's really beautiful....really, really beautiful.

I rubbed his head today as we waited for the dentist to come in. He closed his eyes and leaned into my arm and just let me touch him. I never knew that that would be enough....that that few moments could speak volumes in my heart....and that that would be love. I am so blessed.

Blessings to all of you,

Sherri

A HUGE sigh of relief!!!!

I'm sitting here with Richard and his Dad.......listening to Emily chat, chat, chat on the phone. All is well here at our house.

Yes....the last few days have been very hard in so many ways. I know that witnessing my husband going through a seizure is very traumatic. I lost alot of sleep for the next few days and it seemed like everytime I closed my eyes I would see Richard's eyes.....his stare and lack of focus during the seizure and his intense fear when he started coming around. I cried, cried, cried and then cried some more...I think my world was so shook, finally, everything that I have been stuffing and keeping in check for the past year (most of the time) came pouring out.
Also I was so afraid regarding what caused the seizure. It was a frightening few days....I lost my way for a while...set my strength aside for a while...and I guess, looking back, it was good for me to be whimpy for just a few days.

Two friends....Betsey and Christy....told me not to lose HOPE!!!! When they said that it hit me hard.......I had lost my hope....and I really needed to sit back, pray, open my heart and ask the Universe to help me. It's so true....when I lost hope and my focus...it became so difficult to "live" with cancer. That's horrible...but so easy to fall into.......so much during the past year has been hard....so much has made me feel powerless....so much had been taken away.... I lost the warmth in my heart, all the lessons I have learned, all the blessings that have come our way.

Sunday night we stayed in The Inn at Swedish Hospital because Richard had such an early MRI appointment on Monday morning. Dana, Richard and I went out to dinner and then Richard and I spent some quiet time in our room just relaxing and thinking and "being" together. I shifted, took very deep breaths and tried to find "my spirit" again. I also asked Richard to join me in finding our hope.

I can't tell you how wonderful it was on Monday afternoon when Dr. Foltz walked in and told us (Richard, Pam, Dana and I) that Richard's MRI looked absolutely free of tumor. I jumped up and hugged the man and let out a little squeal "how embarrassing" and then hugged Richard...held on for an extra long time....just basking in the good news. He took us out and showed us the beautiful MRI pictures.....I had no idea, really, what I was looking at....but I could tell and feel that there was nothing "icky" in there....especially with Dr. Foltz taking us on a tour of pictures of slices of Rick's precious brain. It was awesome.

The next day we walked into the Cancer Partnership building in Everett and proudly handed over copies of the MRI....so that the amazing Dr. Congdon (no silly, not Condom) could see Richard's amazing brain. He was at his other office in Woodinville that morning.....but I know when he looked at the discs....he sat back and took a deep breath and smiled from ear to ear. The chemo is working!!!! Believe me....it made yesterdays chemo session totally different than the ones before.

We will see him in person during Richard's next chemo. appointment. We will ask what lies ahead in terms of continuing the chemo and future plans. Until then, Richard continues to struggle with the chemo side effects....along with the effects from the anti-seizure medication that he was initially put on (we are currently weaning him off that and starting a new one), but we are not worrying....not waiting for the "other shoe" to drop....we are basking in the glow of a tumor free brain.

Thank you.....everyone for your prayers and kind thoughts. The food that was delivered has been wonderful.....yummy......and your words of encourgement have helped us find our strength again.

Blessings to you all!

Love Sherri

A Full Pot of Relief!

Great news! Monday took us from a early morning MRI to a afternoon appointment with Dr. Foltz. He greeted us with congratulations, and showed us the last two MRI Images, Mondays, and the last one done 6 weeks ago side by side. Mondays Image showed "NOTHING!! Dr. Foltz marched into the room and whizzed through the newest image saying "There is nothing there! No sign of tumor" He explained that the seizure was related to the past trauma, radiation, and chemo that my brain has endured over the past year. We celebrated tonight with a pot of Remedy Relief tea and My Dad's Carrot cake. I an restricted by law because of the seizure from driving for 6 months! And will be taking Keppra, a anti-seizure med indefinitely.



I do want to thank everyone for the support given during this last horrible and scary episode in this journey. Our refrigerator and freezer has swollen with wonderful food which helps sooo much with all the company here.

My Love to ALL!

Richard

What can I say?

I had such great plans for this post......Wednesday night Richard and I had just gotten back from a beautiful two day retreat at the Whidbey Island Institute for cancer patients and their caregivers. We felt so strong and so loved. We felt rested and were so excited to get home. Richard took some beautiful pictures while we were there and I couldn't wait to share them with all of you. It truly was two heavenly days of total renewal.

But......how rapidly things can change. I am so sad writing this to all of you tonight. I know how close you follow our journey. I feel you all sending prayers and positive thoughts. I feel all your wonderful support. I have watched you all hold us....embrace us with love and caring....and tonight.....I am overwhelmed and so sorry that I have to write this post. Please....after reading this....take a moment to breathe and get centered again in your world. This is hard and I want you all to be O.K. Then please hold my beautiful husband closely in your heart.

We arrived home last night at around 7:30 p.m. Emily, who is living with us now until the middle of November, met us at the door with such a huge smile and warm hugs. The three of us were so happy....just being home. After a quick dinner and a facial (I know...where does this fit it? It just seems important because Emily and I love doing them together) Emily, Richard and I had settled down to read e-mail......the fire was going, the dogs were asleep and we were just quiet....peaceful.....

At around 9:30 p.m. Richard didn't answer me when I was sharing something that I had read in my e-mail. I called his name....and looked over.....and........................I'm sitting here not even knowing what to say..........................I am at a loss for words........................deep breath..... Richard was having a terrible seizure!!!!! Every time I close my eyes...I relive the next 30 minutes in detail....and it is a total horror story. I am too tired and the details too painful and gruesome to describe what happened...but 911 was called, they arrived, and we arrived at St. Joseph's ER breathless and scared beyond words.....all of us.....Emily, Richard and I.

The story continues over the next seven hours. Right now, I want you to have the most important facts. Maybe more details will come later but I don't think this is going to be my best piece of writing. Please bear with me.

Seizures are part of brain cancer. I have been so grateful that, up until last night, we had not had to experience one. Through my own reading, more reading and even more reading....I knew that the possibility of this complication lurked out there. I was totally prepared to deal with it....and frankly I think I did O.K. My only regret is that I had not told our children of the high incidence of seizures with brain cancer. Emily was totally unprepared for this. You can only imagine how frightening it was for her to witness such a terrifying event....to have it be happening to her Father....and to have to play such an important role in the next 24 hours. She was amazing!!!! I am sosososo proud of her.

One of the common complications of the chemotherapy regime that Richard is currently on can be an increased chance of internal bleeding....usually in the brain or in the stomach. That was our biggest fear. The second fear was that new tumor growth and swelling of the brain could also cause a seizure. And the third fear.....was that we may not ever know what caused the event other than the trauma of the last year on his poor brain.

Quite soon I felt like I needed support in making some very crucial decisions that I knew were coming in the next few hours.My first call was to our dear friend Betsey (actually I called her as we headed to the hospital)...who has walked beside us through this journey, seeming to be beside me taking every step I have taken. She miraculously arrived at the hospital and took her post in the waiting room....helping me initially with calming Emily and then supporting me by making necessary calls as I was back with Richard and the doctors. I mainly felt like I needed Richard's sister and brother-in-law with me to help hear the doctors and to assist me in the process of getting Richard the best care possible. Betsey got hold of them and they immediately got in the car and drove from Everett in record time. After a while I encouraged Betsey to go home....I knew one of the front line needed sleep. Emily called her brother. I suggested that he stay in Seattle...because initially I didn't know if we were going to end up there right away or not.

I also made the decision not to call anymore family or friends until morning. I felt strongly that I would badly need a group of people to be clear minded later........ None of these decisions, at this point, are ever easy. I immediately start worrying about hurting people's feelings, insulting family members, etc. But during this past year I've gotten really good at quickly slapping myself around until I get out of that head space. All I could think of was immediate decisions....and clarity for what may come later.

It was quickly determined, after a CT scan, that Richard did not have a brain bleed. We were so thankful. But unfortunately other than that nothing conclusive was shown. The ER doctor did call our neurologist in Seattle and conversed with him about what needed to happen next. It was decided that immediately we needed to make sure that Richard didn't have another seizure. He was given a loading dose of dilantin (1000 mg. infusion) with a plan to start a daily dose given orally (300 mg) until we are able to meet with our Neurologist. Being given this amount of anti-seizure medication significantly reduces Richard's risk of having another occurrence in the near future.

The additional plan was for us to contact Richard's Oncologist and the Neuroscience folks at Swedish Hospital as soon as I could in the morning. It was decided that the most imperative thing was that we get Richard down to Seattle to have an MRI at Swedish and also have that MRI and Richard's physical health evaluated by his Neurologist, Dr. Foltz.

After the dilantin infusion and also a typical response to a gran mal seizure Richard was very shaky, woozy and extremely tired. He dozed on and off over the next seven hours, but also seemed to become a little more oriented as time went by. Thankfully he wasn't remembering any of the seizure or what happened immediately before or after (What a blessing that was for him!!!! I am praising the Universe for that!!!) but he was VERY puzzled regarding why this happened (quickly blaming the tomato soup we had for dinner!!!) and of course very afraid.

Pam and Scott left the hospital at around 3:00 a.m. and found a motel room for the night. Emily and I were able to take Richard home at around 5:30. Getting him in from the car was very interesting....but we made it. He immediately fell into a peaceful sleep. Emily was also able to sleep. Again, I said a prayer of gratitude. Of course I, Ms. Hyper-active, had a difficult time settling down. I think I slept about an hour and a half.

Today Richard has done fine. He's very tired and "wonky".....my term for walking real funny, slurring his speech and having hooded eyelids all due to the huge dose of dilantin. He is mentally intact....slowly putting time back together and remembering more details of everything as our day has moved on. He took naps but most of the time was with us...being his usual self...taking notes in his tumor timer, using his cool white out pen, and wearing his helmet again. This was a unanimous decision.....for now when he's walking the helmet is on!!!!

I've called all the doctors and so far it looks like Dana will take us to Swedish on Sunday evening where Richard and I will stay at the Swedish Inn (at the hospital). Monday morning at 7:15 we will check into the radiology department for an MRI. We will see Dr. Foltz at 1:30 that afternoon. Dana and Pam will be with us. That evening, hopefully, we will go to Everett with Pam and spend the night with her and Scott. Richard has his chemo on the next day. His Father is coming on Tuesday morning from Wenatchee to take us to Richard's chemo appointment and then he will drive us back to Bellingham that evening. He will stay with us for a couple of days.........which is wonderful!!!! Phew!!!

However....all of the above paragraph may change.....because the Oncologist's office called me back this evening to make sure that Richard was being seen immediately by the Swedish team. When I told them we couldn't get in until Monday they indicated that that was unacceptable. So........they are calling the powers that be and we may be heading to Swedish sooner than Monday. Poof!!!! Good planning shot to Hell!!!! Oh well!!!

Dana is on his way home tomorrow for the weekend. Alex has called and offered to come home......but I wanted him to wait.... His strength will be needed next week as we know more. Pam and Scott, my beautiful brother and sister, are tucked back into their lovely home in Everett after a long night and morning with us. Our parents are all safe. My sisters are waiting to help in anyway they can. Betsey has been calling the friends list, Janelle has been writing e-mails to everyone and helping with phone calls, my sister Jodee came by and made us lunch and gave her little sister big hugs and guidance, Jody McNamara delivered a wonderful Thai dinner from our favorite restaurant....and I know there are lots of other things going on in the background....other people who are helping and rallying. Please forgive me if I've forgotten anyone.

Richard went to bed around 8:00 p.m. and is sleeping peacefully. I just heard sweet Emily turn off her light so she is on her way to slumbering. And Jamaica and I are here........trying to relax and thinking about going to bed. So far sleep is not part of this girl's experience...but I trust it will come.

Well...My Word!!! You must all be exhausted!!!! This is VERY long. Sorry......but on little sleep and with high emotion running through my veins....I just couldn't be succinct. I promise that I will keep you all informed as things progress.

My gut feeling is that the Universe wants us all to experience the "full-meal-deal" of the brain cancer journey. A seizure is part of that. Now that it is over....we have done the WHOLE brain cancer thing and I'm sure the chemo is working, the enhanced, suspicious areas are shrinking, and soon Richard will join the ranks of "the long term survivors". None of us can give up Hope. Nothing can take Hope away from us. Hope continues to give us strength to continue this walk.

And Richard would want me to remind everyone....that one of the many lessons to be learned from our experience is that Love is it!!!! Loving each other, living in the awareness of love during every moment of our day....giving and receiving love....AHHHHHHH!!!! That is bliss. Please live in juicy, glowing bliss.....with us!!!!

Blessings,Sherri

I promised.....

I promised everyone some pictures of our past couple of weeks..... Here they are!!! Enjoy!!!

SAILING

Emily and Jason took Richard sailing around Bellingham Bay. It was an event put on by the Bellingham Yacht Club. They really had fun!

CAMPING IN OUR LITTLE TOY HOME

These pictures are from a short camping trip that Richard, I and the dogs took to Deception Pass. We had a wonderful time. We met our new RVing buddies, Helen and John there.

SILVER LAKE

The most excitiing part of our camping trip was that Richard got to put his new canoe in the lake. He loved it and it was a blast watching everyone enjoy going around the beautiful lake. Richard was grinning from ear to ear as he rowed his two kids in the canoe. The last photo is of Alex and his girlfriend, Brianna.

Everyone enjoyed their time on the lake. Jazzy and Mali got to swim!!!! That is their favorite thing!!!

Of course the most fun was the time around the campfire....just talking. It was surprisingly cold at night.....and we needed the fire to keep us warm. We have such a wonderful family. This was such a celebration.....a celebration of just being together.

Here they are! The whole gang!!! Jason, Alex, Emily, Brianna (Alex's girlfriend), Dana and Amy (Dana's girlfriend)!!! Aren't they amazing?!? It was so awesome having the whole gang together. Guess who staged the kissing shot?

Of course......I can't let the chance for a kiss go by!!!!

We are full of joy!!!

Well......I've had such a hard time writing recently. We've been so "full" of making so many decisions lately.....but we are seeing everything coming together and expect, soon, to be feeling more settled and less worried about the choices that have been made. In a way, brain cancer has put Richard in a situation where he is forced to stop and ask questions like.....What is really important to me? What do I want my life to look like? Where do I want to put my energy? What does living with health and awareness really mean? Am I making decisions which reflect my priorities, my beliefs and my true desires? These are such important questions. Ones that we all should answer periodically but choose not to because they are so hard and affect so many.

Richard turned in his resignation last Monday........ His decision was excruciatingly difficult and took patience, compassion and love to peel back all the layers that go into such a life changing event. He needed to talk.....talk to family and friends.....talk about his feelings, his thoughts, his dreams, the loss of such a wonderful job, the money, the fear of medical insurance complications, his true medical condition....what he can and can't do as a result of this horrible disease...his fears, his desires....and he needed me to be quiet....and listen (which many of you know is sosososo difficult for me!!!!!).....but on this side of the process....every day he seems more peaceful and settled with his decision. We still have many decisions to make regarding my own health insurance, how to best use what funds we have.....even how to "live" fully....but it is all falling into place.

We are approaching our year diagnosis anniversary..... For Richard and I it seems like it's been so much longer than a year....but for others it seems like very little time has gone by. Regardless, we are all approaching a year with GBM brain cancer with a new sense of who we are, a new appreciation for each other, a new idea of what is important and a strong commitment to live each day fully with love and grace. We have been touched by so many...and continue to be so grateful for all of our friends, our angels, our families,...the medical teams that we have worked with....We are grateful for so much. We live in awe of so much love and support.

I have had the privilege of standing beside an amazing man as he faces such a difficult/scary thing. I have learned so much through this journey and amazingly I have a strong faith that we are "living" a bountiful, full life..... And Richard and I have grown together and have learned to keep walking through this. We've learned a new rythym together...an ease that only comes when you face such a challenge. We've slowed way down, we're way quieter, we're so aware of appreciation, we've learned to notice the details of our life...realizing that for so long we had missed so much.

We've also grown as individuals. Living with something like this cannot help but change your thinking, your beliefs, your priorities, the lens that you see everything through. I believe that I am slowly learning who I really am. I know I am learning how to listen and be more reflective. I know that I have become a better partner....maybe that would have happened without my husband having cancer...but I'm afraid I may have continued my life with the complacency that had settled around me. Looking back, I had become pretty "safe". I had allowed myself to become comfortable....no risking, no challenges, no trying to better myself. Standing beside Richard, being a Wife, a Mother, a Daughter, a Sister, a Friend has all changed dramatically...for the better in so many ways.

Believe it or not....Richard and I laugh so much. It's amazing to me that we can drive down the road and sing at the top of our lungs TV theme songs and giggle like two little kids when we screw up the words. It's incredible that we laugh at each others"wit" and silly comments...at our stories (even ones we've heard a hundred times)! We laugh with our children, with our family, with our friends. I am thankful that humor is still with us.

The past few weeks haven't been ALL serious. We've camped alot in our little R.V. We've seen friends and family. Richard, Emily and Jason had a fabulous sailing experience with the Bellingham Yacht Club and had a blast. And this past weekend we took all three kids, their various boyfriends and girlfriends and our three dogs on a camping trip to Silver Lake. What a gift that was for us. We basked in the glow of these wonderful young adults. They were all amazing. It was a beautiful time, for everyone, but especially for Richard and I. (I will post pictures later this week!)

It's time for bed....We have chemo tomorrow and that is always a long day. Love to you all. At night when I can't sleep I've stopped counting sheep (it never worked for me!!!). Now I imagine all of your faces.....surrounded in bright light....you are smiling and are full of a knowing strength. You are all my blessings. Thank you for being there for us.

Love,

Sherri

"Dramatic decrease in edema and enhancement"

MRI reports: "Dramatic decrease in edema and enhancement" and "findings consistent with substantial response to therapy." So.. great news that the chemo appears to be keeping the tumor from growing or spreading. Dr. Congdon and I both congratulated each other after he read us the report. Pam an Sherri said it was very cute and wish they could have gotten a photo of us shaking hands. In the final report "Impression", there is a area of enhancement in the "Left centrum semiovale" which the report and the Oncologist say is probably related to post therapy changes. We do trust their opinions and believe that they have seen enough post therapy changes to give an accurate determination.

We will continue with 4 more treatments over the next 2 months and continue to moniter! So, keep thinking.." "Dramatic decrease in edema and enhancement"!

Love to ALL!

Richard

On Our Way!

Well.....Today is the day for the MRI!!!! We're leaving at about 1:00 since our appointment isn't until 4:00. We are going all the way down to Swedish so that the MRI is done on the same machine as the last one in order to compare results more accurately. This is always a difficult time for people in the cancer world. So much rides on these results.

As I've said before, we call this time Pre-MRI Syndrome (PMS) since stress levels for everyone seem to increase. It can be seen in a variety of behaviors...eating way a lot before you know it, having two glasses of wine instead of just one, inability to remember one's name, moving from one task to the next without finishing the first, asking your beloved every five minutes, "How are you feeling?", and having difficulty staying away from scary thoughts. It's difficult, but like everything else on this journey, we get through it.

Unfortunately we probably won't hear the results until our next chemo appointment on Tuesday, September 2. That seems like forever away!!!!! I've deliberately left many chores for the next four days in order to keep myself busy. That seems to be the best way for me to get through the stress.

Richard is just incredible with this whole thing....or maybe he's just good at not letting his worries show. He's still suffering with side effects from the chemo. so I believe that is in the forefront of his mind right now. He's very achy and has frequent chills that are almost immobilizing. The muscle and joint pain make walking very painful....and he seems the most comfortable sitting in his chair with all his books, daytimer, phone and T.V. available. He is able to handle all of this with such beautiful grace. He hasn't lost his beautiful light....it still surrounds him.....letting me know that his soul is at peace with what is happening...reminding me that his faith is unfaltering. He continues to be my teacher. I often stand in awe!!!!

We know that we are surrounded by angels.....angels on this earthly plain and angels that surround us that we cannot see. We believe that somewhere this challenge makes sense...... All of our angels help us with the "how" of living with this disease. We are touched daily by so many acts of kindness.... Our hearts are full of love and thankfulness for all that we have. Thank you for continuing to keep Richard in your thoughts and prayers.

Love, love, love,

Sherri

It's raining....it's pouring!!!!

I am up early....again. Sleeping has been difficult for me.....but....duh....I have A LOT on my mind.

I woke up this morning (3:55 a.m.) having a dream-nightmare-horrible thought. I woke up seeing Richard lying in bed, looking across the room....And he said, "Oh-oh....I can't see!!!!". Oh my God...my mind began moving quickly and my heart beat raced as I started going through all the things it could be, the thing it probably was and exactly what we should do. It all worked quickly....the phone calls that needed to be made, the people who have volunteered to drive for us, our support people (OMG my sister is leaving for a trip....should I even tell her or just wait until I knew for sure what was going on?), how would I tell the kids, remember ALL my medication this time and take enough.... All this immediate planning was done in less then 60 seconds as I sat up and looked at my beautiful husband. My heart was heavy with sadness and fear....and that, now familiar, "here we go again"!

But then the AHHHHH came!!! He's not awake, he's snugly cuddled in the blankets and is breathing with a slow, steady rhythm....his eyes are closed and he is calm...thankfully sleeping away. Oh....I am also lying snuggled in our bed and Jazzy is safely tucked behind my legs, settled in our warmth. OMG!!! I was having a dream. It wasn't real. AHHHHHHH...breathe deeply and rejoice.

And then, as always, instead of going back to sleep like I wish I could, my mind went to those scary places. I began to see images....horrible, scary images....but the worst was one where I clearly saw myself standing with our three children. The four of us were all alone in a dim room. My arms were stretched around the three of them, holding these beautiful treasures, trying desperately to protect them from all this fear, sadness and darkness. All of our heads were bent together, our bodies trembling with emotion. I could see my helplessness. I could not stop their pain. We were bent over, sobbing, letting our tears gather together as only family can do. I looked up to grab a breath and I saw so clearly the four of us.....and as I looked up I saw my face bathed in light and warmth......the light continued down to the tops of my arms...down to the tips of my fingers..... as I embraced these three beautiful, young adults.

The image left me....as my unsettled mind moved to something else......but as I sit here now I am still holding that picture in my mind......seeing everything else with that image as a backdrop. No, I won't go back to sleep for a while. No, I won't take any medication to help me do so. That is because I have learned that this is all part of the journey.... The fear, the agony, the feelings of sadness and unfairness are part of the whole thing. I have learned that by walking through it...sticking with those feelings....I am honoring what is happening here. I'm not running or frantically trying to fix all the many things that are part of it....but I am sitting, breathing, letting the process "be" rather than fighting with what energy I have left. This seems like a kinder, gentler way right now.

The truth is that we've had a very tough 48 hours....mentally.... We've again been forced to unfairly have to do some financial shifting of funds to help us continue paying doctor's bills and some other expenses. I've begun my research about going back on full Medicare coverage with some supplemental insurances to cut down on our medical insurance costs. I didn't sleep last night as I entered the tangled web of Medicare (which brings up HUGE, SCARY issues for those of us who have two expensive, chronic illnesses). And we found ourselves huddled together, holding on tightly as we face the next looming MRI and results which will happen soon. It's been a lot. But you know..........I think we're O.K.........I know we're O.K.

I feel your warmth and love. I know that all of you continue to hang in there with us. Thank you so much. I am so touched by all of your kindness and prayers. You are all beautiful points of light. Shine on!!!!

Blessings,

Sherri

5th Chemo

Today was my fifth infusion of the Avastin / CPT-11. The Oncologists office has made the appointment for the next MRI for August 28th in the afternoon. A little scary.. Sherri call's it PMS (Pre MRI Syndrome) It will tell us how well the Chemo has worked so far. It was also nice hearing Dr. Congdon say that the severe chills and joint pain that I have had the last 2 weeks are "classic text-book symptoms of the Avastin" Feels a lot like Flu / Fever to me. Thank God for Ibuprofen which helps.

Sherri and I had a small private infusion room this time which allowed me a 2 hour nap in the recliner and Sherri a opportunity to finish "A Change of Heart" A book she has been reading.

With Love a ad Thanks to All of you.

Richard

O.K......I know.....it's an interesting look for me...but we were working around the house and I thought I needed to see what we really looked like on a day that we PRAY that no one stops by. I mean.....I'm trying to get my hair a little longer and phew...in this heat it drives me nuts and sometimes I have no other choice but to tie it up in a rag! Very interesting!!!! So now I've posted it to all of you so if you accidently stop by when I'm all a mess...I won't scare you off!!!! But...the important thing is that I think you can see our happiness and love for one another. I LOVE THAT...it even shows when I'm not too attractive!

Well.....it's been a long time since I have come here to write. I guess this past two weeks have been a little more difficult than others for us......not horrible....we've just been sosososo busy with family events and then this past week neither one of us has been feeling great. Time keeps flying.....I'm having a hard time prioritizing and getting things done.

Last week was my beautiful Mother's 90th birthday!!!! My niece, Kamee, her husband and three of their six children came up for the week. Kamee is only four years younger than me and we're very close. We always have packed weeks when she is here.....visiting, going to the beach, eating way too much, shopping, sharing, laughing. We ALL had a great time!!!!

We had my Mom's birthday party at our house and it was really fun......very hectic....lots of people....but lots of loving too!!!!! My nephew and his wife and their little girl Ruby were able to join us....all of my sister's and their husbands were here, a friend of my Mom's also came....it was a full house. But it was so joyful to see ALL the generations together and we all loved watching the kids playing and laughing. It was a celebration!!!! Thank you to both of my sisters for helpng sosososo much.

Richard's "feeling crummy" from chemo has worsened this past week. His joints and muscles are aching so badly he can hardly walk. He's also been experiencing terrible episodes of "chills" that make him so uncomfotable. So far ibuprofen has been the best thing for all of these "ickies" and lots of rest!!!! He hates having to take little naps all day.....but we are learning to go with it. It's been very hard on him for sure!!!! I feel so helpless and of course worried. When I see him shuffle in pain I get scared that it's something beyond chemo effects...but I do alot of "self-talking" and stay as calm as possible. I don't think either of us will ever get use to this walk we're doing. Everything....every ache, bloated feeling, lapse in memory, moment of agitation....all feel scary and out of control for both of us.

I hate to complain....but my own health issues have flared up this past week too!!!! I get these horrible mouth sores as a result of some of the medication I take for my rheumatoid arthritis. They are so incredibly painful.....I just can't even explain it!!!! They are huge and make everything very difficult...like talking, eating, drinking, smiling, breathing......you get the point!!! Anyway it's been a very difficult few days with these and I'm still struggling. I use a mouth rinse that has been suggested by my doctors and pain medication but it just wears me down. I still struggle with how to "do" my own illness while living in the middle of Rick's horrible illness. We're quite a team....that's for sure.

In spite of all of this we went camping for a couple of days. We decided that we could feel horrible in our motorhome just as well as we could here and that maybe a change of surroundings would be a small diversion. We went to Deception Pass and we had a wonderful time. Our friends, Helen and Jon Campbell met us there for one night and then we had one night alone. It was beautiful!!!!!!

See Mali being a camping dog. They love going on our trips. I love having them although it is like having three two year olds around!!!!!!!!!!! Look at that motorhome/toy house!!!! It's so cute!!!!!

Jamaica is actually the best little camper we have.....just put his bed down and he is cozy and ready for a nap!!!

My gosh!!!! I love this man so much!!!!!!

Well I hope that this post finds you all happy and peaceful. Rick and I know that we are surrounded by angels. Thank you for sharing your light with us. We LOVE you!!!

Blessings,

Sherri

Love and Angels

It has been a rough week for me as I have been experiencing some chemo effects combined with side effects of the Nulasta and a minor infection in my throat I picked up somewhere. It has moved into my ears and given me a few difficult nights feeling chilled and feverish.. But, now that I am nearly a week out from the Avastin and camptosar, the symptoms of lethargy and aching muscles are fading and I am finding more energy to do things around the house.

I have been visited by my Angels several times recently and been given WONDERFUL gifts of healing energy. The first was from two Dear ones from my work who delivered a light quilt covered with words, poems, and words of encouragement and love from most of the staff and some residents. When I wrap up in it for a nap, I can Literally FEEL the love and healing energy that was intentioned in it's making.. Here is a photo of me napping that Sherri got.

My white blood cell counts were boosted successfully with the Nulasta after the third session. I am scheduled again for Aug. 18th for chemo, then will be sent to Swedish for a MRI..

We have had also had a busy and fun week helping Sherri's Mother celebrate her 90th Birthday! She is a wonderful woman who still lives independently and drives herself to Seattle. Being with her and her family is a Joy. We've had visits from family from out of state. Today will be the final big party honoring Nana!!!

I thank you everyone again for the food, cards and gifts I have received. It is my belief that what you give out to the world, you receive back again and again and again! Your joy and giving are your true gifts to the world.

With Love to All

Richard

Third Chemo Session!

Yesterday Richard had his chemo and he did great! We drove ourselves down and back and he did a great job. We brought some of our favorite CDs and were moved by the music and the views. We were reminded of the fact that we live in such a beautiful spot. During our drives back and forth I focus on that. It helps the time go by.

Dr. Congdon (no not condom....you silly) was so excited regarding how good Richard looked and by Richard's news that ALL his vision is back and perfect!!! That is our miracle right now....and hopefully a huge sign that that nasty tumor is shrinking, shrinking, shrinking!!!! The next MRI will be after Richard's next chemotherapy. Waiting for that is always a little nerve racking...but we believe that the tumor is loosing this battle....for sure!!!!!

Here is a picture of Richard during his chemotherapy. It's a huge place and very busy. We always sit by the window and get to watch a ball field down below and then also have a view of the Cascades. They do everything to make both of us very comfortable. We're getting amazingly good at the whole process. It takes about four hours total and we've learned what acitivities keep us busy....me....reading and crossword puzzles....Rick....reading and writing in his tumor timer.

Richard's tumor timer is a daytimer that his sister and I bought him during the first week of his diagnosis and it became known as his TUMOR TIMER. Since, at times, confusion is part of this whole journey....the tumor timer helps him keep EVERYTHING straight. He has worked for months to get it perfect....so that it covers all his needs (Phew!!!) He has incorporated a journal into it and writes often. I, mistakenly bought him a cool package of various sized sticky notes and the man is sososososo happy!!!! Those are meticuously glued into his timer. I find notes all over the house and special love notes in my own daytimer....but he is very busy making lists and more lists and more lists!!!! Grocery lists, to-do lists for me, for him, for us, project lists, etc....I never knew one person could have so many lists in his brain....and he doesn't even have a whole brain. It's just another example of Richard's giftedness!!!! I don't know what will happen if he ever looses the tumor timer. It will be a very sad day. I think some may say that he's a little obssessed with it...but I love it...and it really has helped both of us. Sometimes I have to giggle when I see both of our day timers laying side by side. They seem like very good friends.....maybe they're lovers....???? OK....now I've gone too far!!!!!

Yesterday we did find out that Richard's white blood cell count was low (a pretty common side effect of the chemo). It was so low that the doctor ordered an injection, to be given the day after chemo, that will spur the bone marrow to produce more white blood cells. OMG...we picked the medicine up today and we found out that it costs $3,900 an injection!!!!! Is that not absurd???? As we walked home from the store I really hung onto the package. I felt like I was carrying gold!!! He's already given himself the injection...now we wait for the side effects...... Apparently the marrow can grow at such a fast rate that his bones may ache pretty severly. YUK!!! My poor husband....what an amazing man.

After chemo we went to Pam and Scott's house for a delicious dinner. Pam is quite a cook. She always provides great meals and then a wonderful dessert!!!! We love our time with them. They have been so supportive. I feel very blessed to have them in my life. Richard truly loves his sister. It's awesome to watch and feel their closeness. I love it when we can all get together.

Im also including a picture of our new swing. Richard and I put the 1,000 pieces together this weekend and we had a blast. We are such a great team!!!! We actually had moments hooked together (maybe 15 or so) where we forgot about Richard being sick. It was amazing! I've teased him that maybe we should get a couple huge lego projects so that we could put them together to give our minds a rest!!!! Just kidding...TOTALLY kidding! Anyway...the swing looks great and I love just sitting in our yard swinging back and forth. It's so relaxing.

Well....I guess that's it!!! We're doing great! We walked 2 miles today, at a fairly peppy pace and Richard felt great! I'm so relieved that he is slowly feeling stronger. The doctor, yesterday, reminded Richard that healing is really hard work. For the first time he got no argument from Rick. We are focusing on our moments together......living life fully and with passion. Thank you EVERYONE for thinking about us.

We love you sosososo much!

Blessings,

Sherri

Hello to ALL our ANGELS!!!

Man....our days totally seem to fly by!!! I feel badly that I don't get to the blog more often but we seem so busy and by the end of the day when I have time....I'm often "spent" and drained. Such is life with a brain tumor (however we both feel like we are living with a much smaller brain tumor these days...ALLELUIA!!!! Our positive thinking has returned). Sometimes...well actually often....I feel like asking CANCER to move over just a little bit or at least squinch down to a more manageable size. Right now it feels like living with cancer is like living with the Good Year Blimp in your living room. It's just so huge...I sometimes wonder if there is room for Richard and I and it in our house. Cancer also seems to make clocks move faster. Our days are spent totally taking care of the details that cancer brings with it....and phew...it can be exhausting. But the good news....We ARE learning to LIVE with this horrible disease... slowly...one step at a time!

The big news this week is regarding our decision to apply for Social Security Disability. I've walked through this same walk with my own health issues (another "hit" that the Universe had been preparing me for this experience way long ago....hmmmmmm!!!) and I knew that it was a horrendous process. Our decision to apply came during the last three months of hospitals, doctors, bad news, Richard beginning a new chemotherapy regime and his worrying about returning to work and when. We decided that we needed to at least apply and give Richard some options. Applying for disability has felt like a part of the journey that we needed to responsibly do. Our goal remains to be that Richard will return to work as soon as the oncologist says that he can. Until then....He is practising patience and moving through the process (not an easy thing for this hard working man). The next MRI is scheduled to be in a few weeks. At that time, we will see how he is doing.

About two weeks after our interview we were notified by Social Security and told that Richard had been awarded full Social Security Disability. I guess brain tumors are an automatic for those folks (so is blindness......). It can't begin until five months after his last day of working.....so Richard has some time to think about what he is capable of doing. But NOW he has options and options feel good.

Even facing this decision regarding returning to work seems like such a possible loss for us. Richard absolutely loves his job and hopes that he will be able to return. We both love the people who work there and they've been Richard's support group for over 16 years. Initially he nursed nights and then currently he is working as the Medical Records Director. He finds all parts of his job fascinating and misses it horribly. I don't think he has even begun to figure out how to wrap his mind around the idea of not working. Thank God we have time on our side right now and no absolute decision needs to be made.

We were both very sad initially....but as the week has gone on we are trying to face this part of the journey without holding onto too much bitterness, anger and fear. That's the hardest part. Each new thing feels so horrifyingly strange. It feels like a huge gut wrenching shift in our reality and we become breathless and overwhelmed. But we are strong....and we are learning that grieving is O.K. and part of this whole thing. AAAAAGGGGGHHHHHH!

I wanted to share some family pics from last weekend...just to show you that everything isn't dark and serious around here ALL the time. Dana, Emily and Jason spent some wonderful time with us and we had a blast. Richard and I both love having our children near us. We miss Alex....he can't come off Orcas very often to see us......but he's always is with us in spirit. Friday evening we had a wonderful dinner and on Sunday we had our traditional peanut butter pancakes for breakfast. Sunday afternoon some of Dana's wonderful frends came to visit which was really great. Richard loves just hanging out!!!!

This other picture is of Richard and Alyn (a man who bought Richard's bike). Alyn's wife bought him the bike for his 60th birthday. We first met them a couple of weeks ago. When they first saw the bike they both got tears in their eyes. Richard truly loved that bike. He loved every trip he took on it....especially the ones with his Dad. His various rides were always special and gave him such enjoyment. Initially I was so sad about him selling this big toy....but he explained to me that it had very little to do with his brain tumor. He just felt like he was done with using it as much as he should. He wasn't nterested in doing anymore long trips....and so he felt it was time. After we met Alyn (a nurse) and his wife, Colleen....we just knew it was the right decision. It felt wonderful!!!!!

Well......that's it from our house. Thank you to everyone who has visited Richard and I this week. It means so much to us to have company....and it is so good for Richard to have people, physically, in his life. I'm darling and everything.....I can even be quite entertaining.....but he must get a little bored with just me all the time. We love company.....just call first to make sure that he's feeling O.K. We love you all.....all of you!!!!!! I feel your light shining all around us.

Until next time....blessings to you and yours!

Love Sherri

Nightly things.....

I remembered some things regarding my previous sermon that I had forgotten. I woke up remembering....don't you love that when your brain keeps working as you sleep...now that is a miracle!!!! I promise....this will be short(er)!!!!!

I don't think that we get the "why" this is happening thing until we have a true understanding or grasp of the huge picture. I suspect that that may occur after we have left this earthly place (gasp....breathless.....already feeling the huge loss). I think it takes the understanding of the beyond to even begin to see and truly understand why some of these horrible things happen to such wonderful people like Richard.

But we both can see how our entire lives....things have happened which have prepared us for this moment. There seems to have been a gentle hand guding us in so many ways toward this experience. I don't believe we chose this moment....NO WAY....but I do believe that in such an loving way....we've been acquiring the necessary tools to possibly get through the "how" of this part of the journey....(me being challenged by my own health issues my entire life has given me an unique understanding of the medical end of all of this ...hospitals, talking to doctors, understanding medications, procedures, caregiving..., meeting one another when we did and coming together with a strong yearning for a deep, meaningful relationship, having our wonderful time in our magic house on the hill...but being able to sell it when we did and finding our true wonderland here on East Maplewood, coming together and co-parenting with a strength and love that I believe has given all of our children a solidness...a strong core, our similar beliefs and spiritual foundations....arrived at in totally different ways....and mine is still developing...but our beliefs are strong.....etc.......). Richard told me once....that whether I understand it or not my entire life has prepared me for this moment. As Cancer unfolds in my life I'm beginning to see that I am prepared for what it brings. I may be kcking, screaming and crying all the way....but I am ready.

And lastly....the only way that I can believe any of this is because of trust and faith. I trust my spiritual being and my beliefs because I see them working throughout every moment of my day. It is only with trust that I can hold Emily in my arms as she cries with sadness about what is happening to our family that I can promise her that we will make it and that we will be OK (I'm still learning about the "how" we're going to make it....but I believe we will be OK). It's only through faith that I am able to hold my husband, feel the way our bodies fit together, feel his heart beat with mine, and believe that we will make it through this. It is only through trust that we have decided to face this horrible thing head on. Through trust and faith we have begun to, during our sane moments, that we have begun to let go of the "why" of all of this.

OK...ENOUGH.... Now maybe I can go crawl back into bed for a few more moments of sleep beside my beautiful husband. Thank you for hanging in there with me.

Things to be said.....

Tonight....like many times.....I was struck by this thought that totally rocked my world. "Richard!!!! Oh my gosh!!! You have cancer!!!!! Can you believe it?". He responded like he always does....."God.....I know!!! Isn't this a trip?".... This is followed by moments of silence where we just stare at one another.....sometimes reaching out for each other...most times just staring. This is still so hard to believe. Brain cancer has left us breathless...totally breathless. It is making us walk through experiences that we were not ready for. We have been given no specific training in our lives that has even begun to prepare us for how to do this; but we are being forced to march forward and "live". How overwhelming is that?

I've talked with so many of you about the "why" of this experience. Initially I was desperately trying to figure out why this would happen to us. Why were we hit with this? What did I do wrong to bring this upon us? Why is this happening when the two of us have finally found one another and when we have just begun to create our life together? Why is this happening when we have just begun to create a family for our children? Why? Why? WHY? Through talking, through listening to Richard, through talking some more, through thinking so much, so hard for so long.....I still don't know why......And what I've decided is that I probably never will!!! But what I've noticed is that the "why" seems so much more less important than it use to. It's amazing but the diagnosis hasn't changed our core beliefs or our spiritual essence. If anything....maybe we have both become even more sure of what we believe. What we struggle with now....is the "how"....and daily we are learning all too well about "how". The "how" , I believe, is inevitable.

What we've come to believe....what we together have figured out.....through our spiritual beliefs, past experiences and our "truth" is this...... Our vision of our world here, at this place, at this time, is very small. Our idea of the big picture is in reality teensy compared to all that encompasses what is The Universe. We here can't begin to understand the vastness and the scope of all that is. That is why in our experience here when bad things happen it is almost impossible to truly see the "why"..... We are unable to see the big picture as it truly is. We are unable to see all that we need to see to make any sense of some of the things that happen during this earthly experience.

What Richard and I believe, though, is that within this new reality that has been given to us...the challenge is really about the "how". The challenge becomes how to live within this set of circumstances that has been handed to us....and to create what life looks like as we are faced with Cancer.

We are not powerless. We feel powerful....because of many reasons...but mainly because we are choosing to live surrounded by peace, love, compassion and respect. We are loving each other, our children, our families, our friends with intense passion. We are paying attention to details and moments....and breathing deeply. We are continuing to make memories. We are continuing to count our blessings and constantly finding moments to celebrate and rejoice. We are living "full" and "huge" and for now that is our "how".

What I know...is that I love Richard so much. I am such a better person because I met him, fell in love with him, have learned so much from him, married him and continue to create such a beautiful life with him. He has been tender with me and has always expected only the best from me. He believes in me. He sees my goodness. And he has given me the gift of being able to begin to believe in myself and my own worth. He has truly loved me. And I have truly loved him.

We will continue doing this for as long as we can. I want years with this man.....YEARS. I will continue doing this "how" for as long as it takes....because I believe in "us" and I don't want to do this life any other way.

Thank you for being here, at night, in the dark with me. You'll really think I'm crazy....but it's at times like these that I feel such a connection with all of you. The quiet of night helps me see so much clearer. I know you are all walking with us. Thank you!

Blessings,

Sherri

Great Weekend!

As you might tell, mostly due to Sherri's wonderful focus on what brings me Joy, I have had an amazing weekend with all the comforts that I could dream of. Like She said, the extreme heaviness that I get from the chemo has come less often over the past 3 days and I spend some time each day feeling close to normal..!.. Tommorow morning, it's back dowm to Everett for my secong treatment of Avastin / CPT-11. (Article about it in the Bellingham Herald today) No web link, article on A8, "Costly Cancer Treatmant Raises Questions". I continue to believe that as Dr Foltz told us, he has seen Avastin make these brain Tumors "dissappear".

We are looking forward to a quiet Sunday today , maybe dinnner out, and have re-dedicated to walking outdoors everyday which seems to help the fatigue. .

Thank You everyone for being in out lies! Cheryl for the Chemo ride tommorow early to Everett, Mark, for the most delicous blueberry pie I have ever eaten, Richard, Jodi, Don and Barbara for the Lunch and help in the yard yesterday. Lee for your sharing of the Motorcycle trip, and everyone who wrote and called. You are alll making this Journey so much easier for us. We have Angels All Aroud US! YOU!

LOVE TO ALL

Richard

What Will Make Him Happy?

Richard and I have had a wonderful weekend. We've done very little actually...but every moment, even the bad ones, have seemed to be wrapped in gold. Friday I asked Richard what would make him happy....He sat for a moment and then gave me a verbal list. I was determined to make those few simples requests happen for him.....and it was fun watching his beautiful face smile with joy as each little "event" happened.

He wanted a cheese omelet and hashbrowns for one of our breakfasts. Yesterday my Mom joined us and we went out for a yummy meal! The hashbrowns were perfect and the omelet was stuffed with lots of cheese and mushrooms. To top it off the waitress suggested that we try their bisquits instead of toast. OMG!!!!! They were delicious!!!!! Richard almost squealed when she brought him marionberry jam.

He wanted, badly, to feel well enough so that he could ride his "big man" riding lawn mower and mow his own lawn. I was really nervous about this request. He has been so weak...I just really didn't think we were going to be able to pull this off. But I hand mowed all the tight spots and the front yard and Richard was able to mow the rest on his riding mower. Amazing!!!!! He was determined...so determined.....and he finished and did a great job. I was a wreck....but I worked in the garden beds and kept my eye on him. Mowing a yard seems like such a simple task....but for Richard, right now, it is huge!!!! Yipee!!!!!!

I think today was the finale to his wish list. My sister Barbara and her husband Don came up from Seattle and they took my Mom, Richard and I out to Hearthfire for lunch. Richard had been wanting fish-n-chips forever and today he had them....and he said they were absolutely delicious. We all shared strawberry shortcake for dessert. As I watched him carefully eat a piece of shortcake, with the perfect strawberry, topped with the rich, homemade whipped cream....well.....I think the look on his face looked like true bliss.....Oh...my man was so happy.

When we got home my other sister Jodee and her husband Richard were busy working in our yard...pulling our eternal pile of weeds. My Richard went and layed down and my Mom went home.....but the rest of us worked in our flower beds together. That was amazing!!!! Our yard looks so beautiful and we actually had a great time. My family has been so supportive through this journey. I am thankful for their love and compassion. They truly see what a special man Richard is......they want to help as much as they can and they've known exactly what to do. I love them so much.

Anyway....I think Richard has had his "happy list" met this weekend. His requests were simple....but he enjoyed every moment and I loved being with him.

As time away from his last chemo session gets longer he seems to feel better, stronger, less confused and rattled. This chemo and everything before the treatment seems to have left Richard with an extreme fatigue that is almost intolerable for him. He tries, desperately, to explain to me how he is feeling...."lead in my blood", "like I can't even lift my arm".... It must be horrible. I try to encourage him....and tell him that the chemo is doing exactly what it should be....it is taking all of his bodily energy and it is attacking the brain tumor with a vengence...his body is working so hard at the attacking that there just isn't anything left. His job is to listen to his body, imagine the attack and the hardest part....let go and let it happen. His patience is being tested. It is so hard for him because he is such a hard worker.....always busy....strong. To feel so badly at times is so difficult. I'm learning what being a warrior really means. RICHARD IS A WARRIOR!!!!

Late at night....when I can't sleep.....I think of all our friends, family and loved ones. I imagine each one of you as though you are little stars in my spirit...... I hold you all in my special thoughts and prayers.

Blessings,

Sherri

Thoughts from Sherri

Of all things....I have a chest cold!!! I can't believe that something so normal like a cold has entered our house. In a huge way I am relieved....however....of course....I'm panicking about Richard getting it but we're being sosososo careful and today I'm feeling much better. Phew...could it go away without another catastrophe??????? I'm praying that it does.

I've been keeping some of the strangest sleeping hours....and so has Richard. For the first time in his life he is having difficulty sleeping!!!! He is so use to routine that nights of tossing and turning have really upset him. I'm sure that it's a combination of the medication he is on (steroids!!!) and everything he has been through. But....the darkness, the quiet, the space that night brings...it seems to give him room to think, to worry, to ponder...and I believe it's very frightening for him...like driving a stagecoach with a team of wild horses pulling it...wanting to take off and run forever..... When I get up with him, during these sleepless bouts, that is the feeling I get....he looks at me and I hear his mind saying, "Honey....do something.....I can't stop my runaway thoughts.....I'm scared....I don't know if I can hang on.....". All I can do is sit there and listen...and I'm listening hard, making mental notes of things he wants to happen in the future, assuring him when it's needed, opening my heart to his fears and his worries. As difficult as it is to sit there with him and not try to solve all his problems......As hard as it is to watch him mentally suffer.....I am aware that this is one of the gifts of being his partner through this journey. I am aware...that sharing these moments with him are truly priceless.

It is a fact now, however....I HATE BRAIN CANCER!!!!! Watching him deal with the chemo side affects, watching him face this abyss of deep thought, watching him change a little bit each day.....I HATE IT!!!! I realize that he is a very sick man. I know that now it is about making him as comfortable as possible and it's about surrounding him with love, compassion and tenderness. It's about giving him space when he needs it...and moving close when it is necessary. I'm on alert...but yet I'm learning to trust my inner spirit in terms of knowing exactly what to do and when.

We talked to the oncologist's nurse on Friday and she ordered some medication to help with sleeping, however, when we went to pick up the prescription...Walgreens had forgotten to ask how many pills they wanted in the script. By the time they noticed that....the doctor's office was closed for the weekend.....they called the emergency number....but no call back yet..... Another medical glich...that in the end doesn't give my husband any relief. I walked out of there totally disgusted............ Now I hate WALGREENS too.... It is time to change pharmacies. Well this paragraph wasn't very spiritual, was it????? Sorry!!!!

Well....I must get moving.....the day is beautiful, Richard seems steady right now....and I have to brush my teeth.....yes....self-care is important!!! I love you all....if you only knew how much. Thank you for your prayers and support. You give me so much energy and hope.

Love Sherri

Home again

Always feels really good to be home again, even after just one night at Providence in Everett. It WAS a very long one day and night, as we were told to be there by 6:00 AM for placement of a Port-a-cath into my chest for administration of the next step in this process, a new and powerful blend of two chemotherapeutic agents which are designed to cut off the tumors blood supply, causing it to shrivel and die away (Avastin and CPT-11). I will be going to the the Providence Cancer Center in Everett, WA every 14 days for this treatment.

The short version of the story is that The port was not placed until nearly 4:00 PM.. this was after us expecting it to happen early, and me fasting from the midnight before. With Sherri there loving me throughout, my sister and Father there too, we all made it through the day intact. My Dr. came in and said I should just stay there for the night since the Port was in, and My fist Chemo was scheduled for the next day.

Today, after sleeping poorly last night, I AM feeling some Chemo effect with some loss of appetite and generally fatigued. Looking forward to curling into bed again and sleeping sound tonight.

My Love to all. More soon.


Richard

Please send Richard good thoughts!!!!

I feel badly that I haven't kept everyone up to date during this past week.....but things have been very difficult....and time has been in short supply. I will tell you our story now....and apologize right away for how choppy it all may come out.

After our wonderful Father's Day I noticed that Richard started looking more tired and seemed very lethargic. On Monday I watched him very closely...it's funny....at first I always think I'm the one that is going crazy or that my artistic, dramatic spirit is taking over and making really big things out of nothing...but he definately seemed "far away". He went to bed very early that evening and as I tucked him in he told me that he just didn't feel right. (Oh Great....he was noticing it too!!!) In the morning, when he still seemed to be having a difficult time waking up and began slurring his speech a little...I called the surgeon's office and spoke to one of his assistants. We had an appointment in Seattle on Wednesday to see the infectious disease doctor and so they told me to bring Richard earlier in the morning and they would check him out.

Emily went with us...and Richard slept all the way down. The walk from the garage to the doctor's office seemed like forever. We saw the surgeon's assistant, she asked her one million questions and Emily and I tried to describe to her what our concerns were. Richard was barely talking...other then to say he just needed to sleep. She said she would talk to the surgeon and that he may want to take an MRI and that she would call us on our cell phones if he wanted to do a scan that day. I left the office feeling sort of stupid....and Emily was angry and frustrated.

Dana met us at the Infectious Disease doctor's appointment and as we were waiting for the doctor Richard again fell asleep and was totally disengaged with our conversations. The kids were scared and I was incredibly anxious. When we finally saw the doctor I told him that I needed an advocate and that I felt like something horrible was going on with Richard. Richard tried to talk to him but it was obvious that he was struggling. Dr. Cairins made some calls and within 15 minutes we were back at the surgeon's office getting some attention.

The minute Dr. Foltz saw him he suggested that Rick stay overnight and that they take an immediate MRI and so some bloodwork to determine what was going on. To make a very long story a little shorter....basically after running all the tests....we were told the next morning that Richard's tumor had gotten much bigger and that surgery, at this point was not an option because of one arm of the tumor that reaches into a critical area for motor movement. After an examination the doctor determined that the tumor had already grown into the vision area of the brain and that Rick's left peripheal vision was totally gone. The symptoms that Richard was experiencing was from the swelling around this mass and the doctor began Richard immediately on steroids that would help with the swelling.

Later that day Dr. Foltz met with Richard, Pam (his wonderful sister) and I and it was decided that the next day (Friday) we would go to our oncologist in Everett and begin Avastin/CPT 11 (a chemo used typically for colon cancers...but that have recently been used with great success for treatment of breast and brain cancer) immediately. We were scheduled to begin that chemo in early July beause of the staph infection.....but the infection looked like it was under control and the doctors were suggesting that we not wait.

We were all devastated. I really can't even begin to describe how we were feeling...mainly numb and in deep shock. None of us expected this sort of vicious attack from this cancer and we were totally shocked. Pam and I moved into our efficient mode and contacted family and shared the grim news. Richard got pumped full of the mighty steroids which almost immediately made him feel better. We sat and waited for the next attack to begin.

Unfortunately when we arrived at our oncologist's office in Everett we were met with the horrible news that our insurance company had not OK'd the Avastin/CPT 11 treatment. Dr. Congdon explained that even he had called our insurance companies medical director but no one was calling them back. Again....another moment of total devastation and let down. I immediately called Richard's work and told them about our dilema and they began attacking from their end while Dr. Condon's office continued their attack. Meanwhile Richard, Pam and I got our "chemotherapy counseling" and "infusion room" tour and Richard got yet more blood work taken care of. Dr. Congdon scheduled Richard for having his port-a-cath (a permanent port put into a large vein near his heart that will make it so Richard doesn't need to be poked every time they need blood or everytime they need to give him anything...the vein is also big enough and strong enough to handle the toxicity of the chemo he'll be getting) put in early Monday morning and then his first round of chemotherapy will happen that afternoon. As we left Dr. Congdon's office....Richard's work called and his boss had spoken to the owner of the medical insurance company and everything was OK'd and the doctor was being notified. Alleluia!!!!

Phew....What a story......and phew what a nightmare for my poor husband. We still can't believe that this is happening. I don't know what we've been thinking but basically I think we've been working so hard to "beat" the statistics of GBM cancer that we NEVER allowed our minds to really go there and stay with the negative thoughts for very long. It seems like now......we are being forced to look at the vicious strength of this disease and raise the fight even higher than we have been. Richard and I are prepared to continue fighting with as much resolve and energy as possible. We are also so committed to making each moment full with attention and being. It is time....time for us to gather our family and friends around us and to remember all the many blessings that touch us throughout our days.

This weekend has been miraculous. Friday night Emily and Jason came over and we sat and hugged and cried and laughed and then hugged and cried and held hands and talked, talked, talked. It was hard but even hard has it's gracious parts and those are to be treasured. I watched my step-daughter grow that night....as she described her feelings, her fears, her love for her Dad. It was beautiful.

Yesterday we had a band of angels show up to do yard work with us. Oh my gosh!!!! In just a few hours our yard was transformed into the most beautiful place for Richard and I to look out on. What a wonderful gift for us!!!! It was amazing to just be surrounded by such love and giving. It felt so awesome. Thank you so much!!!

Wendy.....our beautiful friend....brought us many yummy meals (she has been providing food since this whole thing began) for our freezer. Cooking has been so hard for me (I don't get why.....but even boiling water seems challenging at this point). Wendy has always provided us with yummy treats to eat. She is amazing....and a fantastic cook.

Richard's Dad, Leo, is here now. He will take us to Everett in the morning and will come home with us tomorrow afternoon to help me with Richard. He is a dear man. Richard's Mom, Fran,will continue to do pet sitting while we're gone. Both of these people are in so much pain watching their son struggle. They have supported us so perfectly. The love and tenderness that they have approached this crisis with is beautiful to watch.

Please send Richard thoughts of strength and healing. He is strong....but he is sososo tired. He needs all of us joinging hands and gathering around him....covering him with healing wishes. I feel you all out there...your energy has held me up....and has provided me with a calm place to rest. Thank you!!!!

Blessings,

Sherri

Father's Day

Happy Father's Day Richard!!! Emily and Dana came over to our house bright and early and we all spent the whole day together. It was so wonderful for both Richard and I (the only thing that would have made it more perfect was if Alex was there too...he was missed!!!!). The day began with yummy, fresh roasted coffee as the kids told us about their previous evening's adventures. Then, as their Dad gave detailed instructions, they made our traditional peanut butter pancake breakfast. It was delicious....even the dogs enjoyed their own plate of pancakes with syrup and peanut butter, served by fork no less!!!!!

The rest of the day was spent doing whatever felt right. Emily, Richard and I went to the Mall, quickly, to exchange some shoes that Dana had bought his Dad as a gift (they have been deemed the most comfortable shoes Richard has ever owned). The kids and I layed on a blanket and soaked up some rays as their Dad took a quick nap. We all sat on the deck and drank iced coffees, enjoying the warmth of the beautiful summer day. After Emily sadly went to work Dana, Richard and I finished a project down by the barn that Richard and his Dad had started a few weeks ago. Richard had thought up this amazing way of getting this HUGE tarp up over these poles that he and his Dad had put together in order to make a shelter for our motorhome/toyhome. Dana and I were in awe of the pulley system that Richard had devised with rope that unabled us to put the tarp over the poles and then tie it down with bungees, etc. Wow!!! The man is a genius!!! The day ended with hotdogs and Grandma Fran's famous potatoe salad and deviled eggs as we watched the basketball playoff game. Emily was back home by the end of the game and was able to partake in the hotdog feast!!!

When the kids left.....I looked over at my beautiful husband and saw a genuine smile on his face. He was exhausted.......but throughout the day he was good about sitting and letting us do things as he directed and he also took a nap and "rested his eyes" at times as we watched T.V. But still....I know that the day was long for him....but so important!!! He needed to "be" with his children. I think it was wonderful medicine.

I know that it was important for the kids too!!!! Our tendency, of course as parents, is to protect our children from experiences that are hard. But I am learning that "hard" can also have its own beauty and intimacy about it that is so unique and moving. We shouldn't always try to protect them from hard.....but maybe model what to do when hard hits and then stand beside them as they approach it and begin to experience it on their own. It's awful that this is happening to Emily, Dana and Alex...but as we've said before there are blessings that are constantly coming from this experience. These lessons are some of the many blessings.

The children need to make the same adjustments regarding their Dad's physical limitations just like Richard and I are having to do. I'm realizing how important it is to let them "take care" of their Dad, see his weaknesses, tend to his needs. They need to see Richard and I working together in this new reality of ours. I know now that we are teaching them, clumsily at times, about how to be compassionate and loving during difficult times and that this is a life lesson....a huge life lesson that they will carry with them forever.

You know...from our first date I knew that Richard was an amazing Father. When he spoke about his children his voice became soft and tender and his face glowed in a way that I had never seen before. His descriptions of his children touched me deeply. He was so proud of them and they obviously brought him tremendous joy. I could tell, without a doubt, that being a parent was, by far, his greatest joy and accomplishment. Before I even met his children I knew that they were blessed.

Over the years I have grown to know Richard as a parent intimately. I still feel so honored to sit amongst them as Richard shares advise, life experiences, suggestions and many lessons with his children. There is such love between the three of them....such admiration...such pride that circles all of them. I've never seen anything like it. They have a peaceful, easy rythym about them. They have been gracious in letting Alex and I join them.

I hope that you all had a fabulous weekend in the sun and warmth. We love you all and continue to feel your prayers and well wishes. Thank you for continuing to care about us with such dedication. It means so much.

Blessings,

Sherri