It's Melting

The snow is melting....you can hear the drip, drip, drip of water as things begin to thaw. This is the part that I dislike....it seems like such a hard process to get rid of all the snow. I guess I'm always a little sad to see it go.

Richard is having a difficult day today. He is very weak and sleepy. He's been in and out of bed for most of the day....and he keeps asking me what I think is wrong with him. I think that it is the new tumor growth and swelling that is making him more tired. Sleepiness is one of the most prevalent symptoms among many. He also seems confused and agitated a little (which could be the increase in steroids). I guess this is how it is going to be for now. Acceptance is my mantra right now. I'm still numb....having a hard time believing that we are at this point.

Our insurance company did O.K. the new chemotherapy which is such a blessing. We go down for his first infusion on Monday and I can't wait to see Dr. Congdon so that he can assure me that this is what is expected. I hate feeling so alone in this...having to make decisions, assuring Richard and the kids and his Mom......trying to appear strong and unphased by all the new symptoms....when actually my stomach is shaking and I feel almost sick. The doctor has told me that there is an increased risk for seizure. I've told the kids and his Mom and it's like we are all just sitting and waiting.

As Richard's partner I have to accept where he is at. I have to go to where he is instead of trying, desperately, to drag him up to where I am. I have to accept the changes in him and stop expecting him to help me make decisions, deal with household stuff, help me take care of my own illnesses. His ability to empathize with me is very limited and that scares me alot. He's been my partner in my own disease care. I'm on my own now and I really feel afraid sometimes. This is just the beginning....I have so much work to do in order to accept what is happening.

Blessed things continue to happen. Richard, Emily, Dana and I had about three hours alone last night where we just talked. It was a miracle what happened. So much love and respect were shared. Misunderstandings that are part of all families were cleaned up, all the questions that the kids had were answered and Richard talked about his death and his sadness to leave us but his belief and faith that the transition will be awesome and that he is not afraid. We cried, we laughed, we told stories, the children asked questions. It was an amazing time.

Today Dana said that last night almost felt unreal....maybe like we went to a very different place for a few hours and learned a tremendous amount. I asked Richard alot of questions during this talk...especially about things that I knew had been confusing for the children...regarding the divorce between he and their Mother, when he began dating me, what it was like for them to initially meet me, how they are feeling now about all of this. He found out how deeply his children love and respect him...what an awesome thing for a Father to hear. He found out that his children held no resentments regarding his decision to leave their Mother. He heard that over their adult lives both of them have thought about taking on the Estes name....prompted by no one....just realizing that they wanted both their parents represented. We talked about things that we all wanted to happen. Emily wants us all to sleep in the same bed. Richard talked about what he wanted before he died. I talked about my fear of doing life without him. It was a beautiful evening for us all.

I will post our Christmas pictures later. Right now I don't think I can look at them. We did have a joyous Christmas and we had lots of fun. It was perfect....absolutely perfect...accept that Alex and my Mom (who got a cold) weren't with us. But today even that seems unreal and hard to hang onto. I just need to sit where I am......and be by Richard. Right now that seems like the most important thing I can do.

We love you all. Please keep Richard in your prayers and thoughts.

Love Sherri

Oncologist's report

We had beautiful drive back from Everett this afternoon. The way the snow hangs on the trees is just so beautiful! It was a nice ending to a difficult day. My Oncologist, Dr. Congdon after reading the MRI report, and going over the MRI scan with us, admitted that with all the new spread of the cancer, our course of chemotherapy does not seem to be working and that he feels it is time to weigh quality of life against quantity. There is another chemo agent that has a low (5%) success rate, that I will try if my insurance will cover it. It has a low incidence of side effects, so should not have too much effect on my quality of life. Even with the side effects I have had, I feel my quality of life has been good. Mostly due to my wonderful family and friends who continue to encourage and support me in this strange journey. I feel that stopping chemotherapy would be like just giving up on fighting this. I am definitely not at that point. Every extra day that I have left in this life, hearing the "I Love you's", and seeing your smiling faces is worth fighting for!

" All this joy, all this sorrow, all this promise, all this pain. Such is life, such is being, such is spirit, such is love."

From John Denver's song, "This Joy"

With love to ALL!, Richard

A Snowy Day!

O.K. This picture is a perfect example of what living with brain cancer can do to someone...all you caregivers out there will totally get this....all of you that have spent any time with me lately will also totally get this..... I put these boots on Friday afternoon and went shopping all over with Emily....then she and I picked up Richard and went out for a nice dinner....then we came home and just spent the evening together. I noticed that my toes were hurting a little and couldn't figure it out....until I looked down at the end of the evening and noticed that I had gone around all day with my silly boots on the wrong feet!!!! That is crazy!!!! Emily, Richard and I laughed until we cried......

It is still snowing in Bellingham and it is very cold. It is beautiful but I feel so sorry for all those folks who have to get around in this stuff. Richard and I have the priviledge of just watching the beauty and being in the quiet. We have plenty of food and our various activities and we are perfectly happy. Emily has been an amazing Snow Driver and she's been needing to be very close to her Dad. We are so blessed to have her with us. She makes us laugh, keeps us very busy and helps out in any way that she can.

After our appointment in Seattle last week, we met Richard's Dad and his wife, Angie, at his sister's in Everett. They brought us home and spent a short couple of days with us. It was wonderful to have them. I love both of them so much. My Father died many years ago. I feel blessed to have such a wonderful Father-in-law. And.....he and Richard are so close. It is beautiful, as I have said many times, to watch their tendernesss for one another.

Leo makes fabulous peanut brittle. He shared with us his recipe and we all made a batch together. Richard and I love peanut brittle. He makes it in the microwave and it only takes a few minutes...it's messy but boy it is delicious!!!! Richard has to hide it from me because I can't stop eating it. I literally hear it "calling my name".

Friday, while Emily and I were shopping, we both were feeling so awful....absolutely not in the Christmas spirit. We found ourselves wandering the stores, crying and boo-hooing together. Then we boo-hooed through dinner and then at home that night. Even Richard did his share of crying. It felt good to be honest about how we were feeling. We allowed ourselves release the pain and sadness that seems to build up so easily.

We hardly ever let this happen. Really...most of our days are spent in a very positive way. But I don't look at this "group cry" as a horrible thing to do at this point. I think this is just part of the journey. It is vital to be honest about how we are feeling and to allow our children the time to grieve with us. Being sad is another important skill that parents teach their children. It is just as important as courage, love, responsibility.

There are other things that are happening within our family that also have made us feel sad. Emily has just moved into her own apartment and has decided to change her relationship with Jason. It has been such a painful transition for her and for him. We love Jason. Richard and I feel sad and miss him horribly. He is a special man. Richard and I also really miss Alex and Dana. Alex is still working on Orcas but he won't be with us this Holiday time at all.....today is his birthday.....He will be working through Christmas. Dana has been in Mexico for the last week and we have really felt his absence. They'll both be with us soon but we really missed them on Friday night.

It is a hard time for us right now. We are in libo until we see Dr. Congdon tomorrow. What I know is that we still can't believe this is happening. Friday night we met at the end of our bed and just held each other. We had just gotten done brushing out teeth, etc.....our usual bedtime routine....and we just stood there, hanging onto one another. I said, "I still just can't believe that there may be a time when we are not doing this routine together every evening". Richard said he was struggling with that disbelief also. After a year and a few months....and so much in between....you think it would have sunk in. But it still seems so unreal.

However....it has been a year and some months of wonderful blessings and wonderful times. Richard and I have been together almost every day during this time....and we are continuing to make memories. I've gotten to know him so much better...his wisdom, his grace, his compassion, his love, his goodness. I have fallen so much more deeper in love with him. Any time that we spend with our children, our family, our friends is truly surrounded by a golden light. We are full of such joy just to be with all our loved ones. I believe we have learned what it means to be grateful for every minute. That is a wonderful gift.

We love you all so much. I will write as soon as I can after our doctor's appointment tomorrow. We are sending you love and blessings.

Love Sherri

The MRI

I'm taking a few moments away from Richard, his Dad and his Dad's wife in order to fill you all in on what we found out yesterday at the Doctor. I'm very sorry to report that the news is not good. The MRI showed two areas where cancer cells of infiltrated Richard's brain. In addition, there were two tumors that we could clearly see but that at this point seem to be inoperable. Richard, Pam and I were immediately in shock. We had all been working so hard on being positve and believing in our collective power of prayer.....but this type of cancer appears to be very cunning and persistent in its attack.

The Neurologist will call our oncologist and discuss these findings. We are scheduled to see our oncologist on Monday morning at 9:00. We are anxious for that appointment. The Neurologist indicated that there were other chemo. combinations that could be used and that he felt confident that one would be available to us. So we WAIT until Monday.

I will write more later.....but now I am needed to help plan our day. Please hug one another and know that we love you deeply.

Love Sherri

This is very to the point.....but I'm trying to stay in that mode for a while......protection I believe?

Another sleepless night!!!!

Again....I woke up and tossed and turned for a while and then gave up....and got out of bed. I walked around our little house. I've been doing this alot recently. Waking up and just looking at the treasures that we've collected and gathered. I spend alot of time gazing, with wonder, at Richard's rock and marble collections. What a perfect thing for Rick to collect....beautiful rocks in various forms and magical marbles; that when caught in the light shine and sparkle. I love to touch his books...you can glean Richard's spiritual core by looking at his many books. I believe you can truly know us by looking, carefully, at our home.

I am anticipating the MRI on Tuesday with dread....not that I believe the results will be negative....not at all. I have just come to dread the process of traveling to Seattle...waiting, waiting, waiting....then a stranger coming and taking Richard away from me as they shoot him full of dye and scan his beautiful head. I wait for him patiently (usually) trying to imagine what it must be like for him. Then we wait and wait and wait for the afternoon doctor's appointment. Richard's beautiful sister is with us...and we talk, laugh, eat hospital food, drink far too much Starbucks coffee and wait and wait some more. It is always an exhausting day for us...no matter what the results of the MRI are.

I have seen Richard grow more and more exhausted. At times he seems to enter a place that I can't be a part of. I imagine, in my own mind, that this is where he goes to learn how to cope with this amazing thing that is happening in his life. I honor his time of quiet and reflection. It seems a vital part of this journey he is on. But I also know that I can't join him there. It's almost as if this is a spiritual time where he gathers information that allows him to move forward in his daily world. I have to trust that at this time he is surrounded by spiritual beings that have already taken him into his arms and are slowly preparing him for what lies ahead.

He isn't moving away from me...we are as close as ever...but we are tired very tired...and our weariness is the kind that others cannot understand. Sometimes we fight it...with mighty force but it is usually much bigger than us...and it is often easier to give in. There are times when we have to talk about difficult things. It's come to the point where we are still fighting this cancer; but yet we have to talk about things...all the things that must be addressed and understood between us so that any rest that is to be had can happen in peace. It's so hard, so painful....so difficult....but we push through all that, knowing that it is vital to our continuing in a redsponsible way.

These sleepless nights are filled with unease and fear. I listen to his rthymic breath, I feel him totally relaxed and I rejoice for that time for him. I often reach out for him...just to touch softly, just to feel his warmth. I look at his little dented head and I am reminded of the miracle of him doing so well. But then I usually grow restless where the possibility of laying there is seems futile and I have to get up and hold the touchstones of the world we have created.

My heart is breaking, I believe, slowly. But it is happening in a way that is subtle and that leaves me with enough strength to hold my children, parent them and guide them that even at their ages is needed so much, I can still find my words of comfort for my Mother and Ricard's Mom. I can love them without holding back....touching them, hugging them and saying my "I love yous" with honesty and committment. I can still take care of business...the bills, the insurance, the phone calls, the many appointments and the rides. Thank God this process is kind at times....surrounding me with an assurance and clarity that is vital but I sometimes feel is just a facade.

Well, my nightly vigil must continue. I just wanted to check in and ask that everyone pray for my precious Richard as he faces the next treatment step in this journey. Take time to imagine Richard surrounded by light, a healing light. We have grown to understand the difference betwen healing and curing....we want to learn and understand all the information we are given, we want to make solid decisions and treatment choices and we want to remain peaceful and strong as we move through this process. Pray for a beautiful brain with no spots, hazes or suspicious areas. Imagine us remaining strong no matter what the outcome.

Thank you, my friends, for your continued support. We love you all deeply.

Blessings,

Sherri

Chemo. tomorrow!!!

We just got home from a wonderful dinner out for Dana's birthday. There were seven of us in all and we had alot of fun. Dana turned 26....his girlfriend, Amy, Emily and Chris (a friend of Dana's) were with us, along with Lisa (Emily and Dana's Mom). I love listening to the twenty-somethings as they talk and laugh. They really are sweet. The three "aged ones" look on in fascination.....we are so blessed to have these young folks in our lives, looking so beautiful and happy and being willing to spend an evening with all their folks. It was a great night.

We are headed to Everett tomorrow for Richard's chemotherapy. We're both dreading it (I am at least....and I can feel that Richard is too). We just never know how it's going to go. The effects of the chemo seem to be different every time. I guess I feel like we're always ready for surprises and new symptoms..... Living on Edge! I guess that would be a good title for a book about coping with chemo. How depressing!

I woke up last night and couldn't get back to sleep. What I've noticed is that when I wake up now I don't have a moment anymore where I forget that cancer is living with us. I wake up knowing that it is part of our lives....almost like a constant drone in the background....no matter what we do to try to mask our awareness of it. Cancer will not be ignored....and as you live with it longer and longer it seems to never let up. It just gets comfy in your world and seems to settle in and sort of ooze everywhere throughout our lives.

I've learned to accept its presence....but I refuse to become O.K. with it totally taking over and becoming the main star in our lives. Our lives are about so much more than just cancer. Richard is so much more than a man with brain cancer. I will not let cancer define who we are and I will always fight the way it tries to make us forget our colors, our textures, our words, our joy. It's so easy to become complacent....and learn to sit companionably with cancer, letting it settle in, dulling us to what is outside...and actually dulling us emotionally until we are surrounded by nothing but gray. It sounds dramatic...but sometimes I feel like our home is covered by a shroud....a haze.....and that reaching through the haze is getting harder and harder.

I feel badly....because I think I've grown so tired and in some respects very weak. I've been whimpy....the fight has felt very hard for a few weeks and my caregiving has been less than satisfactory. I'm not putting myself down.....I know this must be part of the journey. But I badly need to refocus, rejuvinate and rededicate my spirit and energy to our fight. Richard deserves to be standing beside the best "fighting partner" that he can have. Neither one of us can afford to be in less than perfect fighting form.

I love my husband so much. I see him growing weaker, more listless, seemingly far away at times. Sometimes it's so difficult to know what the best "fighting" style should actually be. I try to listen and watch. I try to "feel" what Richard wants and needs. I never assume I know. I never take the power of this vicious beast for granted. I try to know when I should accept the changes but also know when I need to stand up and just try harder.

But I do get tired.....so tired. I can only imagine how tired Richard gets. Our lives have changed so much. It's easy to forget to laugh and to talk. It's easy to take things for granted. It's easy to push....without even really knowing what you are pushing against. It's as these times that I have to stop and breathe and take time to remember the sparkle and joy that comes when two people love one another. It's at these times that I need to just hold Richard's hand and kiss his lips and hold him and let our hearts touch.

I know we are strong and we are mighty. I also know that we are wise. Don't worry....the fight will continue after I get a better night of sleep.

To our angels, our families, our friends.....we feel your continued thoughts and prayers. We are both really focused on Dec. 16th and our appointment with Dr. Foltz and the MRI. We continue to imagine a brain......a beautiful brain that is clear of all tumors and all suspicious areas. We are thinking about Dr. Foltz coming in and telling us that things are good....I'm feeling my heart swell and my eyes moisten with relief and joy. Please join us in thinking the same.

Blessings,

Sherri

December.....Oh My!!!!!

I can feel the hustle/bustle in the air.....the hurry, hurry,, hurry pace that comes with the Holiday Season. And, as usual, I am fighting it with all my might. I am trying not to make any To Do lists, no HUGE meal plans, to shoulda, woulda, couldas. I am trying to hang on and just "be" with Richard, our family and our friends. This year it feels important to throw out all of the usual expectations.....and to bask in the glorious parts of the season.

We had a wonderful Thanksgiving. No matter how I do it....it always seems to be exhausting, but we had a great time with the Kids and the Mothers around us. I planned on Richard feeling sort of "icky" during the Thanksgiving week due to his chemo on Monday and was prepared to do most of the cooking by myself with Emily and my Mom's help....but he ended up being able to help and be part of the festivities quite a bit.

I think that we all knew that Thankfulness was not something that any of us would ever take for granted again. We knew that being together as a family was something to rejoice about. I loved the whole day. I cooked many new recipes that turned out delicious. I kept thinking, "This is a way to tend to my family. This is a way to love my family. This is a way to be a Mother to my children. This is a way to love my husband."

After I tucked Richard into bed on Thanksgiving evening, Alex and I stayed up and talked and talked and talked. That was probably the biggest gift he could ever have given me. My son is such a wonderful man....and I got a sense that he is making good choices for him right now. It was awesome to be able to sit there and listen and understand and not judge......but realize that my only responsibility is to love him with all my heart. It was an evening I will always cherish.

Richard and I are very aware of the next MRI on the morning of December 16th and then the subsequent appointment with Dr. Foltz on that afternoon. We are very anxious to see where we are at in this journey. We ask all of you to join us in creating an"improved" MRI that clearly shows that the chemotherapy that Richard is taking is working. We are picturing the two areas of suspicion to be smaller and less dense and that the defined tumor is still gone. Please take time to think of my beautiful husband and to help us design a picture of health. We both believe strongly that this can occur.

I wanted to let you know that our amazing Dr. Foltz has gotten a lot of "press" lately. I am including a site which has an article that was featured in the Seattle Times. I know you'll be able to understand just how special he is to us after you read this article. He, truly, is working miracles in the area of glioblastoma brain tumors.

http://seattletimes.nwsource.com/html/localnews/2008431867_braincancer25m.html

I wanted to download pictures of our Thanksgiving....but my camera and computer are not getting along very well. I will have them for you for the next post. Until then....love one another and remember that you are always close in our hearts. Rest and find peace during these busy times.

Blessings,

Sherri

A Rainy Fall Day!

The perfect day for an entry!!!! Alleluia! Yesterday I saw the twinkle in my husband's beautiful eyes. It was a glorious day!!!

It's been a very long few days since his last chemo.....and of course I've been so worried. When you're in the middle of it (the days, usually about 9, after chemo.) it is so easy to forget that there is a light at the end of the tunnel...that there will be good days before we start all over again. But the amazing thing is....when he starts to twinkle again...we immediately forget the days of nausea, extreme fatigue and fogginess.... We begin to celebrate again...the beauty, the magic of our lives.

Richard and I have entered a cyclic pattern. I know it, I see it, I feel it I don't want to call it a rhythm because rhythms seem unable to be interrupted. I don't want this pattern to be a permanent part of my beloveds life. I am still very resistant to the power that this chemo therapy regime seems to have over everything we do. I don't know if its good or bad....but I am still battling with the suffering that I see Richard facing during those rough days. I refuse to become complacent with its becoming any part of our lives.

During the suffering...it's so hard to describe how Richard responds. I guess he "settles in to" the reality and tries to just "be" there. I see his response as incredibly courageous. He continues to show his amazing grace and strength. He seems to go to a place where I am not part of....very far away...maybe it is the "Land of Coping"... He seems comfortable there, almost as if he is willing to stay and rest and not be with me anymore. I know, in my head, that this isn't true...but I have an inkling that this is a Land where a special invitation is required.

I guess that that is my fighting spirit and yes, my fear. "Don't you dare make that place of coping more comfortable than the place I can provide!". "My place is much more loving (I hope) and full of the magic of marriage, family and friends". "My place is the place we have created together". "It's a good place". Why would he want to be anywhere else????? Why can't I provide him the place to rest? Why does he have to become part of this other world? Why can't I join him there? Why does he have to suffer at all?

I know why.... My love for my husband and my desire to fight this beast called brain cancer is way too much emotion and power during the times of physical struggling that comes with this journey. I am humbled....but....the fight is better set aside when the suffering is present...and it is a time when I have to "give care" and love and have that be all. It is a time when I have to stop trying so hard....and the worst....it is a time when I have to become quiet and stop talking. "Care Giving" does not mean fixing the problem.....it means sitting with the problem and trying to make it as comfortable as possible. It's the hardest, scariest thing I've ever done....but for absolute sure....I would not want to be doing anything else.

And I guess, that this is the blessing. I am learning to be quiet and just sit. To open my heart, to breathe, to pray.....most important....to watch and listen. And I am learning to stop trying to fix Richard. I am learning the lesson of just sitting beside someone as the struggle with core issues, beliefs and feelings continues on. And the most important.....I am learning to let it all be OK!!!! Oh my gosh...it is painful and hard...but it is a blessing.

Today it seems like a little of the suffering has waned and I see a twinkle, again, in his eyes. He's wearing my favorite hat...an African hat that I bought him last winter. He's organizing bills ( a sure sign that he is feeling better) and has his to-do list all lined up. My heart is open and feeling much more light and at ease. I guess this is the ebb and flow of this amazing journey we are on.

I don't think I've been appreciative enough regarding the continued thoughts, prayers, cards, meals and visits that keep coming our way. We love visits. With Richard not driving I believe that sometimes he feels really home bound.....even on his not so great days....visits are good for him. You are all our earthly angels. I include you in my thoughts and prayers too!!!! I'm trying to make quiet time a part of my day (self-care) and during those attempts (sitting, doing nothing is almost impossible for me), imagining all of your faces seems to help settle my mind. Thank you....for being such a huge part of my life.

Blessings to you all!

Sherri

Autumn

Walking, walking, walking. It is something I do for myself and our dogs. I do it often...maybe just to clear my mind....but mostly to clear my spirit. One day this week as I walked in the park across the street, the dogs running off leash, scampering everwhere, doing their doggie thing, I had a blessed moment. I looked up and I saw a beautiful maple tree....shining with a bright yellow glory. It's leaves were spread out perfectly so that they canopied over my head and I could see each individual one. This bright golden yellow lace was set in front of a huge everygreen tree. The contrast between colors caused me to pause and look up at the magnificence of the pallette that surrounded me.

I became breathless....and then the most amazing thing happened....I felt tears come to my eyes. I was so moved. For many moments I stopped and let the tears flow. I felt like I was being bathed in the wonder of nature. I could still experience the gentleness of it's finest stroke against the bolder stroke of the evergreens. I could still smell the beauty of the cool air as everything prepares for winter's coming. I could still feel my heart beat as I was surrounded by the wisdom of the changing seasons. I could still experience my own inner rythym that automatically matches that of nature. And I could feel my spirit soar as it danced with all the beauty.

Having illness always around me...all the time...sometimes I feel like being hopeful and tending to my family is all I can do right now. It's hard to find my own colorful pallette, my own warmth and whimsy. But, I learned during my walk, that all I need to do is pause and look. I can easily find the glory again.

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