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