Christmas 2008

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


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

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

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

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

I Believe!!!

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

Our days without Radiation and Chemo!!!

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

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

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

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

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

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

You are all very close. I love you!

Blessings,

Sherri

Holiday Break

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings,

Sherri

Radiation Done!

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

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

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

He's SOSOSO cute!!!

Have I told you how darling my husband is with just a teeny weeny bit of hair? Oh my gosh! He is sososo handsome!!! Who would have thought? But I swear he should have been shaving his head a long time ago! And yes...this morning I rubbed his head and made a big wish!

He says his little noggin' is freezing! I think when he's at home he should wear a bandana or a soft, knit stocking cap...and when he goes outside he has always worn a hat!!! I hate him being cold. So I will be on the hunt for warm "inside" hats....(Oh boy!!! Something else to shop for!!!)

Anyway...I just had to tell you that I'm living with a very good looking man.... We are constantly discovering the "blessings" of this brain tumor experience!!!!

You are all in our hearts....as always!

Sher

New Doo

Decided that with the radiation making large bald spots, that I would just take it all off. I have a small beard trimmer that set on the shortest setting worked great. I would have used a blade, but worried about shaving off the lumpy incision line. Have to say that for a guy that was a real hippie in the 70's with hair down to the middle of my back, this is a real contrast! ;-) I kind of like it and I am getting lot's of compliments on it already.

This is Betsy, one of our dearest friends trimming the few spots that I missed after my audition. When you have a legally blind wife, it is good to have friends wit good vision! We had fun! Thank you Betsy!

I have only a few radiation treatments left with Dec 10th being the last. Should be a good cause for celebration! I am still working 4 - 6 hours, 5 days a week. Some fatigue, but generally the challanges there keep me moving and focused.

The Holidays!!!

Since Thanksgiving is over....I've found myself at a very puzzling place......... How do we do the Holiday Season with this brain cancer experience smack, dab in our lives? My feelings flucuate, dramatically, between thinking that all the hoopla is so trivial and stupid....to trying, desperately, to make this the most meaningful Christmas ever. Most of the time I just walk around in a total fog...looking at all the Christmas stuff in the stores, listening to the beautiful music, unpacking our favorite trimmings and feeling pretty numb and lost. I'm really trying...but I'm finding this all pretty difficult and I'm searching for a way to have it all make sense.

My usual pattern, when I am feeling confused, is to just move frantically....filling up every minute with activity, projects and plans. But brain cancer has been far too life altering for me to let myself get very far in my usual maladaptive solutions to "uncomfortableness". I tried today.....offering to work again, contemplating teaching a class, thinking I should join the "Y", getting many art projects lined up to begin.....but the minute I got home and got quiet I realized that "busy-ness" wasn't going to fix this situation at all.... That for once in my life, I could maybe run real fast....but I couldn't hide!!!! I'm very disappointed that the solution isn't that easy. Tears are very near tonight as I realize that this time I can't ignore what is happening in my life....and that nothing but "sitting with it" is going to fix it. DAMN!!!!!

The truth is....I'm really not doing very well here...and I'm worried that that seems selfish to all of you in comparison to the HORRIBLE things that Richard is going through. Please don't worry....I haven't forgotten, for one minute, the gravity of his situation and the tremendous courage he is showing. I know that he is awesome and amazing. But at this particular time I am finally feeling the subtle, damaging, difficult strain of this very emotional journey that we have been on. And though I look OK on the outside....I'm a trembling mess if you look really close. (Please don't look too close, however! I hate for my weaknesses to show!!!)

I don't really know what else to say about all this.....but it feels important to tell people what it is like. It's such a huge part of the experience.

In drastic contrast from the above.....We're doing Christmas, of course!!! We put up our village and our Christmas tree and it was so much fun. I kept telling Richard to stop and take in the "specialness" of our time together decorating. It was a perfect thing to do and we were both so happy. We were decorating for ourselves, for our children, for our family and for our friends.
And it looks so beautiful!!!! Richard was so happy while we were doing it and couldn't wait to show Emily. He was sosososo cute!!!!

This is a picture I've wanted to include of Richard's Dad, Leo and his Dad's wife Angie. I took it when they were visiting the week before Thanksgiving. Leo and Angie had just gotten done making some delicious peanut brittle (my very favorite thing)!!! I have the most wonderful in-laws.

Blessings to all of you! We love you!

Love Sher

Happy Thanksgiving!!!

I've been trying to post all day.....but the preparations and fesitivities of the Holiday seemed to take precedent over everything else! Finally, Richard is snug in bed, sleeping away, and I have a free moment.

I've been thinking about the many angels in our lives. This experience has brought me so many awarenesses...the most significant has been the awareness that my life is richly abundant with beautiful, compassionate, giving people. I am so thankful for our family and friends. We have been touched, over and over, by the generosity and love that has been shown to us. Often, I have felt such "awe" by the grace of all of you. You have truly taught me so much that I will carry with me for years. Mainly...you have shown me how to care and love people at times when they are struggling. I will never forget this gentle lesson that you have demonstrated for me....and I promise....I will "Pass It On".

Of course....I am thankful for Richard's amazing strength...both physically and emotionally. Eventhough he has struggled with his treatments....I am very aware that he is doing remarkably well considering the acuteness of his illness. To say I am proud of my husband seems so silly.... He truly is the most amazing person I know. He has given me so much and I am blessed to be able to stand with him through this experience. He, too, is a gentle teacher....very kind and patient. What seems particularly special, is that he truly sees only the "good" in me....and makes that part of me only stronger.

We were surrounded today by our beautiful children and our Mothers. It was a perfect Thanksgiving!!! I hope that all of you experienced a wonderful and yummy day.

I love you, always!!!

Sherri

Hair Doo

The radiation treatments are starting to catch up with the hair follicles at the areas of entry. This photo shows some of the obvious spots. Good news is that I am over half way through the treatments now. An occasional mild headache and some tiredness from the internal brain swelling are the only real noticeable symptoms from the treatments. Everyone is being so supportive and encouraging. THANK YOU. Have a nice holiday everyone! I have lost an appetite for sweets related to the chemotherapy, but thank goodness I still am loving the salty, fatty foods!.. Bring on the Turkey and dressing!

Love to All!

Richard

Day 12

Today was day 12 of the 40 radiation / chemotherapy treatment schedule. Starting to feel it's effects a little with some headache related to the swelling caused by the radiation and tiredness which comes suddenly. Sherri has been so great encouraging me to slow down, take a nap, rest.. I really love her an am so lucky to have her in my life and here at my side.

I have been working for 3 - 5 hours a day for the past couple of weeks which has been great as I have had time ti pull things together there. I have been there so long and I honestly feel like so many of the staff are practically family!

A Wonderful Weekend!!!

We had a wonderful weekend!!!! On Friday it was Emily's 21st birthday. That is a huge birthday for our young folks and one she has been waiting for for a long time. We started the celebration at her favorite restaurant. There were nine of us in attendance. The food was yummy and it was really fun to watch our "little girl" order her first margarita (mango!)!!! After dinner we came home and had Richard's famous chocolate cheesecake and opened gifts. Then the young people left to take Emily to all the bars in town.

Dana came up for the birthday celebration. I think it is so sweet that Jason (Emily's boyfriend) and Dana accompanied all these giggly girls on their night on the town. I see them as the Protectors!!! Dana reported that Emily had a BLAST!!! Phew....I'm just glad that it is over. As a parent....I really worry about the drinking thing....but so far everyone is safe!!!

For me, the most wondrous part of the evening was eating Richard's yummy chocolate cheesecake. It was delicious.....the kids told Richard that they thought it was the best one ever. He was beaming. It felt significant because he still has the magic touch...and was "able" to make the cheesecake with perfection. I was worried that maybe the cheesecake making part of his brain had been removed in the surgery....but it is still all intact. The cake was awesome!!! He continues to amaze me.

The rest of the weekend was spent eating breakfast with my Mom, spending lots of time with Dana, shopping, seeing Dana's friend Chris, watching TV (a Netflix sit-com that we had rented), and hosting my monthly art group!!! In amongst all this Richard was able to rest and nap and rest some more (he is requiring more resting time). There was a lot of laughter and love surrounding us all weekend.

It means so much to Richard to have his children around him. I, too, enjoy their visits. I love watching their total adoration of their Father. Richard has done such a wonderful job raising his children...and continues to be such a great role model for all our kids (including Alex!!!!). He is an unassuming teacher....very patient, kind, compassionate...yet such a strong leader.

I hope you all have a joyful week. We are beginning ours with a wild wind storm. It's been fun to watch it from our warm little house.

Blessings to all of you,

Love Sherri

The Machine

I am feeling better this afternoon. I worked for 5 hours today which felt good, but a feeling of shakiness continued to follow me around for most of the day. Difficult to describe the feeling.. weak, tired, fuzzy... shaky. I went home at 1:30 and took a nap which helped a lot, then off to my daily encounter with The Machine. This is what I have come to call the radiation machine at the cancer center. It really is am amazing marvel of modern technology that is able to target a radiation beam of prescribed dose and density to an area within a millimeter to the inside of the body. I have also compared it to what it might be like to be captured by the BORG from the television program and movie, "Star Trek". I cannot see with the mask on, but can hear the Machine moving around my head with lots of buzzing, and whirring of micro motors, laser beams crossing my closed eyes, the smell of ionized air.. a very strange experience. I am thankful that the Machine is killing any residual cancer cells that may have been left behind in the area of inflammation around where the tumor was located. I was told though that the treatment would have cumulative side effects.. probably what I was feeling today.

Love to all!

Richard

I still can't believe that CANCER has become part of our world!!!

I am sitting here still in awe of this word Cancer and of how less than two months ago it was not a part of my personal experience whatsoever! How can that be? How can this be happening to such a blessed man? How can this be happening to all of us? We haven't been married long enough. We have not been able to co-parent our children for long enough. OH MY GOD!!! I still have such a hard time believing that this is really happening to us. Isn't that amazing? I'm still in total shock and denial regarding this whole, awful thing.

This journey is so hugely painful for everyone. Tonight, as the darkness settled around us, I could tell that Richard wasn't feeling well. I could see it. I could feel it. I could even smell it. Not that Richard smelled bad....but his "not right" smelled bad. His voice was different. He moved differently. I've learned to just wait....and watch.....and move slowly and quietly.... Sooner or later, as I watch him struggle physically, he always comes to me and lets me know what is happening. It seems like it takes him a while to figure it out and then to put it all into words that I can understand. I'm able to wait for this now. I'm able to respect "his time". It's much different than "my time"....but I can wait.

Tonight we were at Fred Meyer. I could see that he was really tired but he really wanted to go shopping for a few things that we needed. I thought we should go early so we could get home before dinner and then settle down for the evening. He agreed. We shopped. We held hands. But then I got him a cart to hang onto, thinking maybe that would be less tiring. I still was doing all of this in my head, trying to just let Richard be. (I find so much comfort in just being with him. That sounds wierd....but just regular things like shopping with him feels like such an honor. Doing some of our normal things has begun to feel HUGE!!!)

Finally, after a while, he told me he thought we better pick up something for dinner because he was feeling shaky. Then he apologized (he apologized!!!) and said he thought we should get through the check stand and go home because he was feeling shakier. Poor guy...I put my hand on his, as he pushed the cart. We methodically went through the paying ritual and then went home.

It was hard not to scream at all the people who were motoring around picking up things after work....moving quickly and with great determination. Couldn't they tell that my beautiful husband had brain cancer? Couldn't they see how tired he was and how hard he was working? Couldn't they see him struggling to just do something as simple as shopping? God....I just wanted to scream at all of them....like a crazy, raging, mad woman......but I didn't. I moved calmly and carefully....holding Richard's arm the whole time! AMAZING!!!

We finally got home and he ate a little dinner and then just sat in his chair...looking totally lost. I asked him to tell me about how he was feeling. He tried to explain.....shaky, cold to the bone, so tired, so not himself. I covered him up. I rubbed his little shaved head. I took his temperature. I held his beautiful hand. I sat beside him and read a magazine as he closed his eyes. I read my e-mail....checking on him periodically. I sat and read some more. Then at about 8:15 he asked me if I thought it would be OK for him to go to bed. Oh my gosh...my sweet husband...yes.....you can go to bed.......and I helped him take the heavy comforter off the bed and put on a lighter blanket.

I don't think I can ever allow this to become real. I think as long as I treat the cancer as an unwanted visitor I can than keep it from overtaking our lives and taking total control. Richard and I have had to redefine our normal....but redefine it our way....so that cancer doesn't control who we are or who we will become when all this is over with. I know we are both incredibly strong and I know we will get through this....but I'm still in awe that we are the central players in this story...that Richard is the main character and that I am supporting him...using a new language, new props, new backgrounds, new rules. I really can't believe it!!!!

I've rambled on enough for one night. I can hear my family saying that it's time to wrap this one up....but this THING is so powerful.....I just needed you to know. We are totally prepared by the medical folks for nights like these. Richard can't be taking the chemo and radiation without avoiding some horrible side affects. We are ready....it's just the awful part of the journey. No matter what...we continue to be thankful and strong....together.

We love you all!

Blessings,

Sherri

Sometimes it feels like our days get away from us....and by the time that I sit down to write in the blog I realize that I am all "thought" out and that I can't "think through" one more thing. The bottom line is that this chemo/radiation schedule that we are on seems to keep both of us busy and at least I am a little stressed and so writing often doesn't happen. I know there are many people who want to hear about how Richard is doing....I'll try to be more up-to-date with my blog entries. I promise.



It should be no surprise to any of you that Richard is doing fantastic on his chemotherapy and radiation regime. He is feeling great so far (since he started taking Zofran), still has his hair, so far doesn't have any burns or even red skin from the radiation and isn't struggling with fatigue or lethargy. He continues to be smiling, laughing and amazing everyone with his attitude and faith. He is back to work for at least four hours a day and seems to be flourishing with all those supportive, loving people surrounding him.


We both continue to feel blessed by the support of everyone. We have been moved to tears many times as people's kindness touches us. It's hard to believe, sometimes, that so many people care and and are so willing to help us in such beautiful ways. We know that the loving vibrations that continue to surround us will help Richard remain cancer free. We are so thankful for all of our angels.

Thank you Zofran!!!

What a difference a day can make.

Yesterday....poor Richard was sick again with his chemotherapy and was getting no relief from the compazine that had been prescribed for the nausea. We met with Dr. Thompson and he agreed with our research, stating that Zofran was a marvelous drug, but it was VERY expensive ($50 a pill!!!) and often wasn't covered by insurance. He told us that he would ask his nurse to call our insurance company and see if they would cover a month's worth of medication and that she would let us know. Later that afternoon I was able to walk up to Rite Aid and pick up a new script for one tiny Zofran tablet, every day, for a month. Alleluia!!!

Richard had already taken compazine for that day so we decided to begin the Zofran today. Last night was miserable for poor Richard. To put it bluntly....the only thing he ate all afternoon was an apple......and he preceded to throw up that one apple for about six hours. He was horribly sick and angry....and I was horribly aching for him...

But today.....was total heaven!!!! First, Richard returned to work finally after seven weeks. He was warmly welcomed by balloons, presents, his favorite chocolate chip cookies and lots of hugs and well wishes. When he got home he was all smiles...... So happy...... So relieved to be able to do something normal like working for a few hours..... And mostly sosososo touched by all the beautiful angels that he has worked with for many years. He was like a little boy who was sososo proud of a HUGE accomplishment.... And it was huge after everything he has been through. He was at work for just a few hours but it symbolized so much for him...and for me.... It was a step in his recovery and it was wonderful!!!

Soon after he got home we had to begin preparing for the schedule of our chemo/radiation regime.....and frankly.....even after just three days of it.....we were dreading it with very heavy hearts. But I told him, as he took the Zofran, that this was going to make everything totally different and that we had to expect that today was going to be a wonderful day....and guess what?????? It was!!!! He took his chemotherapy, we went to radiation and he did his treatment and he has felt marvelous throughout our entire afternoon and evening. We're both so excited....we just can't believe the difference. We are both doing the Zofran dance!!!! We LOVE this new medication!!!!!

We are feeling very happy tonight. We spent part of the evening with our daughter, beautiful Emily. Richard was so present with us, so tender and sweet. I was so thankful that he was feeling well enough to lead us in a beautiful conversation. The specifics of the conversation isn't important.....but what is awesome is the depth of feeling and love that was shared by the three of us. In the end....we stood together and just hugged for moments....way past normal...and it was a precious time for all of us. Another blessed moment...that maybe without cancer having happened to us...may have just been skimmed over.

Today my sister pointed out to me something very important....She told me that through this experience we all have to remember that it's imperative to make every moment count...... Thank you Jodee for reminding me of that. You were my Buddha....my teacher!!! I love you!!!!!

I love you all!!!!

Blessings,

Sherri

Forty More Days and Counting!!!

Well.....here we are on the second evening of chemotherapy and radiation. Because of the clinical trial aspect of Richard's treatment the timing of the anti-nausea medication, eating, taking the medication and radiation need to be pretty exact. It is taking Richard and I, together, to be absolutely sure that we are following the schedule. But.......we are making it.

Yesterday morning we began the regime that ended with Richard's first radiation treatment. Betsey came and drove us, since Richard started taking compazine for nausea and we weren't sure how that was going to affect him. I think I was more nervous than Richard (which seems to often be the story through this entire experience). They took him back for his treatment and he came out about a 1/2 hour later smiling and happy. He said that he felt it a little (Wowzers....how horrible!!!), like a tickle inside his head. He also saw a flashing blue light which I guess is expected because the radiation beam stimulates the optic nerve. I can't imagine!

After we got home he preceded to get very nauseated and lethargic and spent the rest of the afternoon in bed. He felt and looked miserable. I did alot of pacing, moving from activity to activity, tried to be very quiet and played many games of Free Cell. I tried not to just stand over him and stare....that probably would have been defined as way neurotic! However, I really hated watching him suffer and I felt so helpless.

Today his radiation treatment went really well.....he felt nothing (Thank God). The radiation tech. (a young, tall, beautiful, blond woman whose name, I'm sure is Veronica Gorgeous Blond...no.... we can't remember her name, but anyway......) took me in to see the room and the HUGE machine that they use for the treatment. I tried to see it as a "healing apparatus", but in reality it looks very big and frightening. Richard, however, was all smiles and loved showing me how it works.

This afternoon has been another time of nausea and lethargy. He's actually throwing up today (oh my gosh!!! I really hate that for him) and is eating very little. (This may be way too much information for some of you...but it is our reality right now. Sorry if I gross anyone out.) I guess we have truly entered the chemotherapy zone. I was hoping we could avoid this part.

We've gone on-line to all the Brain Tumor groups we have each joined and have asked for help. We've gotten tons of advice. Tomorrow we see the radiation doctor and we'll see what he thinks. Also we can meet with the woman, Cheryl (our beautiful angel), who manages the clinical trial patients and maybe she can contact the oncologist and talk to him about some ways that will make Richard more comfortable.

So I've caught you all up. We have forty more days (phew!!!). Richard is strong and I trust the doctors so much.....I know we will get him to the point where he can tolerate the medications better. It's sososososo important that he keep taking the chemo.....it is our assurance that all those nasty glia cells will be taken care of for good. He continues to be absolutely amazing.....absolutely!!!!! I LOVE THIS MAN!!!!

Blessings...as always,

Sherri

It's been a long time!!!

We've had a very busy few days since we have last posted. On Thursday my two sisters, brother-in-law and Mom took Richard and I on a field trip to Bow, WA where we visited a dairy farm where they make delicious cheese. It was sosososo interesting! After that we went and had a delicious lunch at a cafe in Bow that we all love. The food was marvelous and it was wonderful to be with my family. They have been a constant source of support for us. Thank you to all!!

Friday we spent a wonderful day out at a friend of ours....Marge Forest. Marge is a magical person in my life....a wonderful potter whose work I collected for many years. After I quit working she began teaching me the craft of pottery. She has remained a precious friend of ours.

Richard has always talked about the possibility of his working in clay. The art has always intrigued him. I contacted Marge and asked her if she would be willing to spend some time with us....introducing Richad to clay. She, or course, opened her studio and her home and invited us out to her "haven" for the day. She made us lunch and then we spent some time in the studio. Richard is amazingly artistic and like many things....he sat down, listened for a few moments and preceded to create a beautiful "burnng bowl" that he wants to use for little ceremonial fires. It was awesome as I quietly watched his hands work and mold the clay. The piece he made was truly beautiful. I have found clay to be so healing. I hope that we can do more of this.

Friday night was a true night to remember. Richard is in love with the cult film "Dune" and he has found two friends who also love this classic (I am not included here.....when we first started dating Richard shared the movie Dune with me and I truly thought I wasn't going to make it through it....... I in turn, showed him my favorite film, "The Best Little Whorehouse in Texas". I believe he was equally as horrified with my choice!!!!). Friday night he carefully planned a Dune Fest with his friends Jason (Emily's boyfriend) and Kevin (our Chemist friend, husband of my friend, Joanne). Joanne and I went out to dinner and made candles as the boys watched Dune and ate Dune related treats and pizza. Below is a picture of the Dune group (with Joanne). The worms are significant and related to the film. Hmmmmmmmm!!!

The highlights of our next two days was the time we spent with Emily, Dana and Jason. It feels important right now to gather our children very close to us and to spend quiet time with them talking, remembering and planning for our futures together. Richard is an amazing Father. Our children are amazing. All of us being together is incredibly special.

In anticipation of the chemotherapy and radiation, which is to begin this week, Richard has been talking about shaving his head (he had a difficult time imagining his hair with big clumps of hair falling out). All of us were hesitant to have him shave his head. Maybe we were frightened that he would look like a cancer patient....but he is a cancer patient....and it became obvious to me that doing this was an important step in acceptance for all of us. I suggested that he have Dana and Emily help him with this task and they indicated that they were up for it.

We all were pretty hesitant to begin the process but once we got going it became such a healing event. And Richard looks absolutely handsome with his new shaved hair. I can't believe how darling he is. Dana and Emily were so excited by how with every stripe it became clear that the essence of their "Dad" still remained and in some respects his looks even became more congruent with who he really is. It was a wonderful experience. (Thank God!!!!)

So...........our life is continuing as we deal with this new "blip" in our experience. I think both of us are dreading Richard's first dose of Temador and his initial radiation session. I feel anxious about him suufering with nausea and exhaustion and also can't imagine how scary it must be to face radiation. We have talked alot. I am so thankful for our ability to communicate and share with one another. That has made all of this so much easier. I love him sososo much.

Thank you, everyone for your kind thoughts and prayers. Your encouragement has meant so mcuh to us. You continue to be by our side as we move through this experience.

Blessings,

Sherri

Dr Congdon

Quick update for Thursday, October 25th

Here I am with Dr. Jim Congdon at our first meeting on Oct 23ed. A really wonderful and again optimistic man who was willing to spend as much time with us as needed to answer all the questions we had. As you can see from our heads, we have something in common. ;-) He was in favor of the clinical trial and will take a big role in it's administration and monitoring. The following day, Sherri and I had a busy day in Bellingham meeting with the Clinical Trials Nurse at the cancer center, setting up my initial appointments for radiation and taking a few cognitive tests in order to set a baseline for future monitoring.

Next step is the start of radiation and chemotherapy on Monday. I am planning on returning to work part time as well next week depending on how the treatments effect me. It was suggested by Dr. Thompson that I try to create as much of a normal routine as possible during the treatments depending on how I feel.

Sherri and I continue to focus on health, and try to walk a mile or two every day. We have started a mindfulness meditation practice and are sincerely focusing on the gifts that this experience is bringing into our lives.

Tha Mask

Looks like a facial with grandma's old pantie hose! Let's pretend OK! It was fun and did feel like a facial as the warm, wet plastic was stretched over my face then locked to the table. Soothing.. Actually, I had just come out of the CT scan machine and was being fitted for my "mask" which I will wear each weekday for 6 weeks during my radiation treatments. After it stretched and was formed to fit my face by Tod, the tech, it hardened. I can't wait to bring it home after this is over and have Sherri paint it in her fun and festive colors!

Sherri and Pam and I are heading to Monroe tomorrow to meet with Dr. Congdon who will be the physician in charge of the chemotherapy drugs. Dr. Mayberg told us a couple weeks back the Dr. Congdon will be my "quarterback". Interesting.. we have heard from several health care providers that he is "wonderful". Future visits with him will be at his Everett office, but tomorrow, he is in Monroe.. We have some important questions regarding the Stage 3 clinical trial which I may be participating in. Please see Kevin's comment on http://richardandsherri.blogspot.com/2007/10/day-of-decisions.html for an explanation of these clinical trials. Thank you Kevin!

P.S. it has not escaped Sherri's dirty mind that the name Congdon is very close to to the word "condom". She is now living in fear that she has inherited Nana's (her mother) habit of name switching! (Oh, the embarrassment!!)


Dr. Condom, here we come! ;-)

How we all do "self-care"!

Hello Family and Friends!!!

Just a short note to show you how we are ALL taking care of ourselves (Self-care seems to be an important part of this journey!!!). Pam couldn't wait to show us how she was taking cqre of herself. Last weekend, she and a really good friend went to a day spa and she had a facial and pedicure!!! Her toes were so pretty that Richard had to take a picture of them.

I, on the other hand, do "self-care" a little differently. I spend time out in the art studio making beautiful candles!!!! It was so nice to focus on the magical process of making these little chunks of glowing color.

Richard has spent the weekend relaxing and spending time on the Internet. He is learning so much about the world of brain tumors!!! He has met so many supportive, loving people on line. He seems to be comforted by their dialogues. I am so glad.

Thank you for keeping us in your thoughts and prayers. We feel your beautiful light.

Love Sherri

Day of decisions

Friday, Oct 19th was a day of decisions. Sherri, Pam and I went to meet Dr. Ian Thompson for a early appointment (9:00 AM) . What a sweet guy! We have been so blessed to have wonderful physicians come into our lives!. It has made this experience so much easier. Dr. Thompson did a quick assessment and then told us that I was eligible for a stage 3 clinical trial. Now, in the past, I have heard of clinical trials through different sources and through some support sites, I have heard of other cancer patients being involved in them. He said that a nurse who manages these trials would give us the whole story. He went on to explain what the radiation process involved, and what we might expect... and again, like physicians must feel obligated to do, he reviewed the statistics on survival rates in months.. In the end, I felt that we all really like Dr. Thompson and felt comfortable with every one there.

More on the Clinical trial.. These clinical trials are done in order to advance treatment. They must go through many different committees and boards in order to advance to stage 3 trials where they are working with real patients who are eligible. Stage 1 and 2 are the testing stages where the do the animal studies, laboratory studies, and are reviewed by the many different boards and panels in order to advance. This clinical trial I am eligible for is involving the dosing regimen for the temazolomide which is the first line, standard chemotherapy drug now used for glioblastoma brain tumors. If I choose to participate in this study, I will be randomly chosen to receive either the standard dosing and treatment, or an experimental dosing.. these different dosing regimens will be analyzed through the trial to see if the experimental dosing helps in the treatment of this cancer.

We spent close to an hour talking and asking questions about this trial, how it might benefit me etc.. Chemotherapy has a bad reputation of course as being toxic and making patients very sick, so this is a concern. I spent some time later last evening of course consulting with my Friend, Kevin Swiss, Ph. D. who is a chemist, scientist and very smart man whom I am blessed to have as a friend. After a very head heavy evening of reading the 100 plus page description of the clinical trial, talking to friends and family and doing some research on the Internet, we decided that participating in this trial would do nothing to harm me, and would very possibly help me. We are going to talk to Dr. Congdon who is the chemotherapy Dr. about this Trial next Wednesday. This will be our first appointment with him and again, several people at the radiation center here in Bellingham said to us, "You are very lucky to get Dr. Congdon, he is fabulous!".

An Early Morning!!!

Yes...it is 4:45 a.m. and I am up....I guess for the day??? I've been tossing and turning since 3:00 and decided that that was stupid and have gotten up and layed on the couch, listening to the weather outside.....rain, rain, rain....and the comfoting house noises that you can only hear deep into the night. Often. having trouble sleeping (it's a family issue...my Dad had difficulty sleeping and I have one sister who also struggles) I have learned to LOVE the little house noises that happen only during the darkness of night...it's almost like our little home sighs with ooohs and aaahs....finding joy in the simplicity of watching over it's family...keeping us safe and protected. Sometimes I know our house is truly alive....with such a strong purpose...to keep us warm and sheltered.

After a tough couple of days, with increased pain levels, I decided to resume my weekly injections for my rheumatoid arthritis. I got my injection earlier this evening. It was a difficult decision....there are some troublesome side effects...but when I "heard" myself complaining outloud about my aches and pains it became apparent that I needed the medicine. I'm disappointed that I had to do this...feeling the side effects may complicate things here a little...but I'll just have to see how things go. My own illnesses are very complicated....one tends to feed off the other...when one flares, everything seems to go crazy (increased pain levels.....then high blood sugars and all that goes with that). So back on the medication wagon again!!! A note here.....I know I have to keep healthy....in order to be strong during this somewhat critical time in Richard's treatment....also....I know that there has been a HUGE change here...life isn't just about me anymore (SLAP!!! Hello Sherri....welcome....finally....to how it should be). My own medical decisions that I am making are made with all of that in mind.

As I lay there tonight....I keep going to the radiology appointment that we will be having this morning. I am dreading it!!! I think it is another step in making this whole horrible experience more of a reality. The radiation part feels very unknown to me. It feels very scary for Richard. It feels HUGE. It feels potentially dangerous. It feels dark. And I picture myself watching my husband through a window, laying there helplessly as modern medicine "looms" over him, around him, through him. I am imagining that both of us are going to experience such a helplessness. I'm questioning whether I can bear it...but knowing deeply that the only place I want to be is right there, as close to him as I can be.

My poor husband!!! This is so awful. I watch him sleep (even that has changed....he sleeps deeper... It feels like he goes "far away" from here as he sleeps. Sometimes I just have to wrap my arms around him so that he doesn't disappear all together) and feel so sad that this is happening. The tears often come as I watch him sleep. He seems vunerable then...and I become the sentry on patrol. It can be bad...really bad!!! But in an odd way it can so perfectly intimate and beautiful. My purpose, at these moments, seems very clear.

I know....I probably shouldn't put this "icky" stuff here....Richard reads my entries...I don't want to make him feel bad...but we made a committment to one another that we needed to tell our WHOLE story. He wants that...in some ways more than I do...... This is my truth...I really don't know how to walk through this without sharing this part too!

I believe that all of this...ALL OF THIS...is leading us to that place of a long life together. I believe that we will achieve that. I see us watching our children mature, dancing at their weddings, tending to our Grandchildren, traveling to our dream locations, creating a beautiful yard together, eating really good food, being with our families, continuing our spiritual walk together, laughing with one another, making photo albums and more photo albums of all of our wonderful experiences together....I know it will happen....I believe to my core that it will happen. And I know that what we are doing now, all the things, are leading us there.

But part of what we are doing to get there is having to walk through these terrifying moments of discomfort. It's part of it...DAMN!!! Tonight what keeps going through my mind are the words, "I am strong and capable" and "What would love do?" These mantras seem to be my best tools right now.

I honor my angels out there. I feel your light. I know you are struggling with me and sharing my pain. I couldn't continue this journey without your support. I know, way down deep, that this is hard, unbelievable, for all of us....ALL of us. I'm just so sorry that this has to be part of our experience together.

OK...it's 5:30...one more hour until Mali and Jazzy wake up Richard and we get started on our day. I can't wait to give him a big, old bear hug and tell him how happy I am to have him in my life.....I am sosososo blessed.

Love, love, love Sherri

Being Home!!!!

Oh we ALL had a wonderful day!!! Our dogs are loving having us home together!!! They've never had it so good!!! Jamaica gets to sleep all morning and have both of us giving him pets and kisses when we walk by him. His life is wonderful these days.

We went to see our Naturopath, Mark Steinberg today. It was a great visit. I've been seeing Mark for years and therefore he knows Richard pretty well. In Richard's and my review of GBM trreatments (especially treatment plans forwarded to us from GBM patients) we have noticed that those individuals with a more "Holistic" treatment plan seem to have a longer survival rate. Given Richard's and my background and experience in alternative medical care we both feel strongly that Mark's expertise can only enhance the treatment protocols of Western Medicine. I know that with Mark's help, Richard will have the strongest auto-immune system possible and that some of the problematic side effects of chemo. and radiation will definately be minimized. It was such a great visit!!! We both feel really good about his adjunct ideas.

We are both prepared for some questions from our western medical team providers. We have both had experience having to justify our beliefs in adjunct therapies and are prepared to smile, nod our heads, listen carefully and then leave ready to make our own decisions regarding what our entire treatment package will look like. Our goal will be to always work toward keeping Richard as healthy and strong as possible throughout this experience. This step will take more courage....because some may disagree with adding this component but Richard and I are in total agreement. It feels right for us!!!

The rest of the day was great!!!! I, of course, have to maintain my "cuteness" and tendency toward the eccentric through this cancer interruption.......I had a fun time getting my haircut and my eyebrows and upper lip waxed (ouch....I kept thinking, as she yanked my little eyebrow and upper lip hair out by the roots, that surely this can't hurt as much as Richard getting 12 stitches without any numbing!!!!). Today I also put on ALL my bracelets, necklaces, cool earrings and fun make-up. Don't ask what got into me.....just a little "self-care" on my part.

While I was out I met my beautiful friend Tracy (who many of you will know because she has driven for me for years and years and years) for a yummy lunch. I love her so much. She and I have been through so much together over the past twelve years. It was wonderful seeing her and I only thought of Richard about 10,000 times during our outing. I felt so warmed by her just listening to me....she is an amazing listener. Thank you Tracy!!!

So tonight we're waiting for Pam, Richard's sister, to arrive from Everett for the evening. She will join us for our radiology appointment tomorrow. Pam is our other ears.....she's very smart, warm and supportive. We have loved having her and her husband be part of our decision making process.

I'm off to make the guest room all cozy!!!!

Blessings to you all!!!