An update from Sherri

Dana, Richard's son, has brought his computer to the hospital and he's letting me borrow it for a minute. We've had quite a week....crazy....busy....scary.....but today it has seemed that Richard has turned the corner and he is feeling better. We probably won't be home until Monday....because of setting up a visiting nurse to help us with the twice, daily infusions of antibiotics.

Richard didn't get out of the ICU until Wednesday evening.....that was a long time for us. The pain he was experiencing was sosososo horrible....they really gave him alot of medication in order to control it. In addition, there was alot of swelling and they were trying to decide if he needed to have a drain put into his head in order to drain off excess liquid that was collecting from the surgery site.....so it was very tense.

Since we have been on the main floor, he's been experiencing a temperature which has added to all the complications......lungs were crackling, head was hurting and basically he felt really bad. But....today it seems like all of the medications are working right together and we are making progress.

The type of infection he has is a epidermal staph infection which is one of the easiest to treat...so we will go home with an infusion set up and I will be hooking him up twice a day for his on-going antibiotics.....six weeks of that. Then after we're sure the infection is gone, we will come back here and he will have a plate surgically put back to cover his sweet, little brain. He's very excited....because until then he will have to wear a darling helmut whenever he is standing up (He looks like a gorgeous skateboarder...........). Yes....my artsy friends....it is just asking to be altered majorily.

So that is my update..... We have felt all the precious prayers and blessings coming our way. This has been ssososososo frightening......he was in tremendous pain. Thank you to Joanne and Kevin Swiss and Betsey for being there for us when we were at St. Joe's. Joanne actually drove us to the hospital as I held Richard's head (It was awful!!!!). Betsey and Janelle have been awesome.....such treasures..... Both of our families have been amazing. We are so very blessed.

Until my next chance to post this will have to be it!!!! We love you all!!!

Blessings,

Sherri

Richard's Update

I'm writing this post for Sherri and Richard, since they have been at Swedish Hospital in Seattle for the past few days. They wanted everyone to know about the recent events that have unfolded. On Saturday, Sherri had to take Richard to our local ER becuase he was experiencing a high level of pain in his head. The doctors there could not find the cause and felt he should go back down to Swedish Hospital where he was originally treated. By the time he arrived, it had become apparent that Richard was developing a serious infection. Within two hours he was in emergency surgery. The surgery showed that the infection had made its way into the bone above his right temporal lobe. The bone was removed and cultures were taken to determine the cause of the infection which they are still awaiting the results for. Richard is now in intensive care recieving a number of antibiotics to treat the infection as well as medication to try and control his pain. The hope is to return home later this week with IV antibiotics for the next six weeks. In about 2 months he will have to undergo another surgery to have a metal plate placed in the same spot from where the bone was previously taken.I will continue to keep everyone updated on Richard's progress as I recieve more information. Please keep both Richard and Sherri in your prayers during this difficult time...

Update By: Betsey

Celebrate!

Ahhh. looking forward to today.. Sherri, Alex and I spent yesterday scrubbing the deck, mowing the grass and collecting things (chocolate cake, beer, etc.;-) that we will need for the party today. It will be fun to have everyone here, cook some food on the grill outside and relax and have fun on this beautiful day. Costco was selling these wonderful vegetarian hot dogs made by Tofurky and we have collected a supply for today, My Mother is bringing her excellent potato salad, and along with other assorted picnik food and drink that shows up, we will all have a summer BBQ dinner.

The disraction will be welcome for us. As Sherri mentioned, it has been hard this time. As much as we try to stay positive, there are moments when that is really difficult. I have had constant pain the last week requiring Ibuprofen which helps. I am woken frequently by the light sound of gurgling of the subcutaneous fluid over the surgical site. Not sure if it's gurgling in or out.. but the swelling IS getting smaller day by day.

We are scheduled for two appointments this week in Seattle with the Oncologist Tuesday and surgeon on Thursday. So we will of course keep you updated.

The kind and loving words and thoughts are so appreciated. Sher and I are learning so much about the power of Love through this experience. You are all our most beloved teachers.

With Love

Richard

Happy Birthday Dear Richard!!!

Yesterday was Richard's birthday.....and it was a "you can do anything you want" kind of day...where we mainly took care of business, took the dogs swimming and then ended with dinner with Emily, Jason and Betsey. It was the perfect day.....the sun shining, warm, easy to be outside.....

This weekend promises to be a big one for our family. Everyone is gathering to formerly celebrate Rick's birthday on Saturday afternoon. We're planning a barbecue.....and it looks like most of our family will make it.....even his sister, Pam, and her husband from Everett are coming and also Rick's Dad from Wenatchee will be joining us for a few days. All the kids will be home too!!!!!!! And.....I can't forget our Mothers.....they will both be in attendance. Richard is really looking forward to it. I'm wondering, a little, how we're exactly going to handle the whole thing but I think we'll be OK. I know we will be OK.

Of course....everyday seems to bring new issues, challenges, and, thankfully, some beautiful blessings. Honestly....I see my husband struggling a bit and that is horrible to watch. The helplessness I feel and also the fear, at times, can be so intense....breath taking in a way.....He seems to move away from me....very far away.... Yesterday afternoon he got very tired and he stopped talking pretty much....just looked at me as if he had something to say.....but he couldn't collect it all together to put it into words. He'd mumble, "tired" or "hurting", and then just stare at the TV as if that was about all he could muster. Even dinner out seemed exhausting and when we got home I put him in bed, took his temp. (normal), rubbed his little head, and began my prayers to the Universe.........then I called my dear sister and she helped me sort it all out. Phew!!!! This is such a damn trip!!!!! Brain tumors, surgery, cancer, chemotherapy, brain trauma....none of it is easy for the patient. It is a shame....such a horrible shame.

What I know is that we have more moments of grandeur then we do of being lost. What I know is that together we are amazing. What I know is that we are learning to "live" with ALL of this, maybe not fighting it as much, but learning to live with it in a wierdly peaceful sort of way. What I know is that my husband is beautiful and grand. He still is surrounded by such a golden hue...twinkling as he walks, emitting love, joy, compassion. What I know is that he is gathering it all into a very deep space.....to his spirit.....and that he is healing and trying desperately to remain present for this part of the journey. What I know is that we love each other and that it is that love that we are giving others....opening to others....it is way big love....way beautiful love!!!!

Sometimes I know that we are grasping at each other and at the world....hanging on with a fierceness that is exhausting. I'm learning that it isn't necessary to do that.....that lightly touching the world is enough right now. We won't fall away and go to scary places. We are surrounded by hands that are holdinng us, warm that is protecting us from falling away forever. I am sad. I am still in awe that this is happening. I am aware that I am part of a miracle somehow.

Happy Birthday my beloved. You are loved by so many. People are out there watching you in total amazement.....wanting to sit by you and just be with you.

My love to all,

Love Sherri

Finally...a moment!!!

Richard is all tucked into his favorite chair watching the news...and I'm finally able to collect my thoughts a little bit. My fingers are having a hard time working because my hands, wrists and elbows are pretty sore from knitting non-stop for the last few days. I think I have to take a break from that activity for a while since arthritis hates repetitive movement when it is done in a compulsive, frantic way!!!! The knitting has been a wonderful activity for all the sitting I've been doing....I have to keep busy somehow.... I'm moving on to Soduko however!!!

We really are doing very well considering that my husband just had brain surgery and has six chemotherapy wafers in his head....oozing continual chemotherapy directly to his brain. He's on lots of medication....all aimed at keeping his brain as stable as possible.....things to help with swelling, things to help with pain, things to help control possible seizsure activity, things to help his stomach because of all the other things....Just keeping up with the medicine delivery has been a challenge for me but I think we are doing pretty good.

The hospital experience was amazing. I am so thankful for the support of my sister-in-law and my wonderful step-son Dana. I am also deeply touched by my two beautiful nephews, their wives and children who provided food, wonderful soothing tea and visits that were warm and sosososo lovely. And.......the delivery of the most beautiful cupcakes from Pam's friend Peggy....Oh my gosh that was sososo awesome!!!!! Those cupcakes were worth the extra shot of insulin I had to take!!!!

I continue to be in total awe of the doctors, nurses and other medical professionals that we were working with down at Swedish. Dr. Foltz, Richard's surgeon, is such a warm, loving man....while at the same time being a total genius. We have been so blessed in finding both him and Dr. Mayberg and their staffs. They are all amazing. Richard was tenderly cared for through the entire experience. A couple of times I caught myself tearing up when someone was particularly loving....well to be honest it happened all the time...... All of them were so wonderful.

I have to also comment here on my step-son, Dana. What a wonderful man!!! Prior to Richard's diagnosis Dana has always talked about his weak stomach regarding blood and hospitals. I have had the priviledge of watching this young man face his fears with such courage and grace. During both surgeries Dana has stood beside his Father and I through every scary step. He has been calm, loving, tender, funny, willing to do anything.....but most importantly he has been present with his Dad and with I during some very difficult conversations and procedures. I know how frightening this must be for him....but he is letting himself feel the pain, the fear, the sadness....and he has become one of my heros!!!! I can't thank him enough for being there during the past few days.... He just left this afternoon to return to Seattle and his job....but I knew he was hesitating until the moment he got on the bus..... I promise Dana we will be O.K.......but we will miss you until next weekend!!!!

I am thankful to be home in our little house. We both love it here so much. We have created a haven here and it is the perfect place for Richard to heal.

Thank you everyone for sending your prayers and special thoughts. We felt every one of them.

Love Sherri

Home.. at last

We made it how about 3:00 PM on Saturday afternoon. Dana served as the driver which gave me a wonderful break in the back seat to snooze an listen to the delightful chatter of my loved one's coming from the front. We were checked out and home in no time after a stop at the Swedish pharmacy for my medications. Dr. Foltz was wonderful stopping by sometimes twice a day to check on us us and admire his stitching job on my head . of which he was VERY proud! This photo was taken while I was in the ICU the evening of the surgery.

I am feeling great.. as you might imagine, the right side of my head feels puffy and sore and I have trouble hearing out that right ear.

I want to thank everyone for the kind and thoughtful words and energy you have sent my way. It really has helped me helped me make it through this experience.

My deepest love and gratitude to all.

Richard

The Day Before We Leave!

We just heard from Swedish and Richard's surgery is schedule for some time around 12:00 p.m. (high noon...or close to it!) on Thursday. No matter how badly I want time to slow down time just moves faster and faster and I feel like I'm hanging on with all my might as the wind challenges me to stay connected. These last few days have been excruciatingly long and painful as we anticipate this surgery. Richard keeps saying, "It's just brain surgery" but even those words feel pretty awesome to me. Brain Surgery sounds so ominous. I remember Dr. Foltz telling us, last time, that brain surgery really isn't that hard??????? Oh my gosh....how can that be?

I'm trying desperately to provide a little calmness and sanity here at home for Richard. I'm beyond knowing what else I can do when I know that he is feeling so sad about this turn of events. I really think we both thought we would be the exception to how Glioblastomas "usually" act and that Richard was going to fly through this disease with just a blip on our radar. To have a recurrence so soon has been very difficult for both of us....but especially for him.

I keep reminding both of us about the wonderful quality of life that we still have. That seems so worth fighting for. Sometimes cancer is so huge...especially Glioblastoma Brain Cancer but our spirits are huge and together with our families and friends we can continue fighting. I know how hard it is to keep it up.....I see it in his beautiful eyes and in his shoulders as he holds the weight of this so bravely. I try, feebly, to help and to take care of the details...but sometimes that just doesn't feel like enough.

I don't know what will come with this surgery....I mean I'm envisioning my beautiful husband opening his eyes and smiling widely at me...immediately saying that he is OK. I'm envisioning him wiggling all his fingers and toes on command and making his usual request for something cheesy and for a triple tall Starbucks Americano with half & half. I'm envisioning grabbing his beautiful hand and holding it softly.....rubbing his arm....and feeling him squeeze my hand with assurance and warmth. I can't wait to rub his head....he loves that now... I can't wait to look into his soft eyes and see the wisdom and love that always is there. Then I will be O.K. Then we will be O.K. and we can start healing from this phase.

I feel everyone thinking of us and wishing us well. Thank you!!! So many of you have stuck by us through the past eight months.. We have been so blessed with tremendous support and love. It has meant a great deal to both of us. This journey has taught us so much.....but especially about the value of true friendship. As I sit quietly...trying to calm the many thoughts in my head....I often feel a warmth and peace begin to cover me. I know that that is all my beautiful angels sending us well wishes and prayers. It is such a treasure to have all of you so very near.

Love, love, love Sherri

Realization..

As I said We found out Tuesday that I need another surgery.. no big deal really.. just brain surgery.. ;-(.. Actually, the doc's said that it was much easier the second time.. "just take out a few screws, lift off the plate & I'm there.." I think this means it's easier for him.. don't you think? Actually, it wasn't that hard the first time.. I was only in the hospital for two nights… this time prob.. 1.

It's so hard to believe!!!

I'm really having a difficult time wrapping my head around preparing for another surgery. If I'm having a hard time, I can only imagine what Richard must be feeling. Since we have been through this once.....one would think that it would be easier......but in actuality......I think because we've been through it once it may be more difficult the second time.

Since our appointment with the neurosurgeons....Foltz & Mayberg (I like to think of them like a well trained vaudeville act....I can just see them with their canes and top hats, doing a little tap dance, singing to Richard as he drifts off to sleep)...I've been working on getting everything lined up and ready to go for next week. I felt a little anxious about doing something different than what the oncologist (Dr. Congdon) had suggested....and I finally spoke to him today and went over the plan. He thinks that since the Swedish team sees surgery as the best option it is an opportunity to see exactly what the abnormal tissue is.. He also agrees with the use of the Glidadel Wafers (scary to me!!!) that will be left laying on the tumor site. He explained that it is the only way to get chemotherapy directly on the active area. In addition he said that chemotherapy is delivered 24/7 for about six weeks and that that is an amazing delivery rate. Apparently there are very few side effects and the wafers just dissolve over time. Hmmmmmmmm. Sounds kind of spooky to me for some reason.

Actually I think this all is pretty alarming right about now. I hate it that Richard has to go through another surgery. I hate it that all of our hard work at creating a tumor free scenario did not work. And I'm really disappointed that we all have to be more afraid and shakey. We can do it...and we'll do it well....but I hate it!!!!

There's so much that I want to share....but I lack any sort of emotion right now. Also it seems that my creative button has been turned off today. I know that this is the Universes way of taking care of me....putting me in "efficiency mode" and letting me avoid the pain for a while. I'm glad that the weekend is here. Richard and I need some time to "let go" and relax. That will feel so good.

A side note is that Richard and I are thinking constantly of our friend Helen whose 32 year old daughter died this week. What a horrible thing....I can't imagine. We are keeping her and her family in our prayers. I love you Helen. I am sending you strength, peace and hope. I know that Jen was a very special woman. I am so sorry.

Namaste my friends. I truly love you all.

Love Sherri

Surgery May 8th

Sherri surprised me with a night at the Heron B&B in La Conner for our 3ed Anniversary. Here is a pic of our great room with it's giant jetted tub. The next morning we ventured to Swedish to talk with Dr. Mayberg and Dr. Foltz about their reading of my most recent MRI.

We were hoping of course for better, but we returned scheduled for a second surgery next Thursday.

1 in 3 chance it is radiation necrosis, for which they will just sew me up & send me home. 2 in 3 chance it is tumor re-growth, .. they,.. Gregory Foltz will be the primary, and Marc Mayberg will be assisting, will remove the tissue, and place Gliadel wafers on the resection site.

Sherri and I have things planned out up to the surgery date.. and help and support is in the plenty.. for now.