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!!!

Oh-Oh!!! It's dark out AGAIN!!!

It's amazing that today marks ONE MONTH since Glioblastoma Multiforme Level 4 came knocking at our door. Can that be possible? Oh yeah...it must be true....my shoulder's ache and my neck is as hard as a rock, I can't speak in complete sentences, my eyes are scratchy from not only the shed tears...but also from the tears that I have held back so that I don't upset anyone, it's nine o'clock and Richard has finally wandered off to bed after sleeping in his chair for the past two hours and I haven't had to cook for four entire weeks (the food has been outrageously delicious too!!!). Definately....this is what a life looks like when it is totally shook up by the horrible cancer of someone you love deeply.

I must say, however, that I can see ways that cancer has only made me stronger and more sure of what is important....more clear about who I really am and the things that I have to continue to work on to be a better person. Cancer has humbled me and has clearly told me that to join this fight I have to change for the better. Cancer has also given me the unique opportunity to see my own truth and the truth of my husband and to see the perfection in our union as a couple.

It's odd to realize the good parts of something that has also been so devastating. I think that that is the complexity of this disease. There is a transformation for all those who touch cancer in some way...nothing can ever be the same. We have a choice regarding whether the transformation has purpose and empowerment or whether we face the challenge as passively as possible. These past four weeks have been so difficult and frightening; yet for me it has also been a time of confirmation.

And through it all Richard and I are having remarkably good days. As I reflect at day's end, I can always find moments of laughter, times of sweet closeness, stollen kisses and hugs, sick humor, peaceful times and lots and lots of love. That is the miracle...really!!! Life continues....and we try to ease into the flow without too much disruption. It is truly amazing!!!

On our months anniversary (yes....I think we will add "The Arrival of Cancer" as a poor excuse for a Hallmark moment) I am reflecting on all the beautiful people who have supported us with such grace and love. We have been so blessed!!! Thank you to all who have kept us in your thoughts and prayers. I am so touched by all the special things that people have done for us. We couldn't have made it this far wthout you.

Blessings, Sherri

Only a month? The "WHY" arises again.

Up at 6:15 Am as usual this morning. Funny how much routines play a part in our lives.. I sit down with a cup of fresh roasted coffee, look at the calendar and surprised to see that it is the 17th... a month since the diagnosis.. seems like yesterday and forever at the same time.. Difficult to fathom how much has happened in the last month.. more difficult at times is to keep the question of "WHY" from my mind.. Funny how it keeps popping up for me.. I know that on an intellectual level, the question does not have an answer, but spiritually by beliefs lead me to the concept of "everything has it's reasons on a grander scale outside our mortal realm of understanding".. The teachings I have encountered in my life have led me to ideas like this.. of looking at life and it's issues not as tragedy's or accidents, but as events that we have chosen on some level in order to bring us closer to who we really are.. closer to "God" whoever that is to you. Hard to imagine that there would be a reason for anything like watching your wife, parents and children cry at the same time. This has been the hardest part of this for me.. being the caregiver and provider always.. to watch the pain this has brought into the lives of those I love.. I tell myself that even though pain is sad, it can bring forth feelings and emotions that we have not yet experienced and can grow from their experience and understanding.. they can bring a new level of closeness into our experience. Yet, things seemed to be going so well... WHY did this have to drop into my my life?? crap, there I go again..

Donuts!

Ended up the afternoon today with a treat.. Betsey and Gail stopped by before their big trip to Art Fiber Fest with a box of assorted Rocket donuts AND a package of TJ's carrot cake muffins! Here I am with a sample of each and every doughnut in the box!! Itwas a celebration of sorts as Sherri and I took the reign's and called this morning making appointments with the MD managing the Chemotherapy AND were referred to Dr Ian Thompsn here in Bellingham for the radiation. We have initial appointments with both coming up.
Here is a shot of my three beautiful donut angels delivering the goods! Just FYI, believe it or not, since I have tapered off the steroids, I have already dropped 6 pounds! Hard to believe considering what is on the table!

Stay Tuned!

Love to All! Richard

Day of waiting

Today felt like a day of waiting to hear from Dr Mayberg and the "tumor table" discussion which occurs every Monday at Swedish Neuroscience. Sherri and I waited somewhat anxiously not wanting to leave the house in case the call came.... which it never did.. so what I learned today is to have faith that the call will come when the time is right.. I am believing this evening that Dr Mayberg was spending the afternoon reaching the radiologist he mentioned whom he wanted to do the radiation treatments for me. He had told us that he knew that this associate had moved north and that he would reach him and put us in contact.. Tomorrow! ;-)

I heard from many of my wonderful Angels today.. Thank you!!! You words are like wispers from above and bring me strength.. also, I did find a wonderful and encouraging email list / group through MIT, "BRAINTMR".. I have received SO MUCH encouragement so far today and heard many stories of long term success.. like this one I received only minutes ago.. "When I was diagnosed with the GBM in June 2000, they told me I would only live 1 year. It has now been 7 years, the best of my life. So keep up the hope."

I am finding new strength every day.. I feel the love and energy you all send and am GRATEFUL! I thank God you are in my life!

Richard

The morning after!

We've just had our morning cup of coffee and spent some lovely time talking. It was a rough weekend for me...full of "everything". That sounds dramatic (which some of you would expect no less from me) but by "everything" I mean that this is really such an emotional rollercoaster....I seem to be hanging on with all my might....as my thoughts move up, down, around sharp corners, over huge hills, dipping deep into valleys. I've cried, I've laughed, I've sat numbly, I've hugged fiecrcely, I've watched like a hawk, I've protected with awareness and I've loved like I never have loved before.

Richard and I just had a discussion about what to do next??!!! It's such a huge question...but it seems like there are daily decisions that we should be making...but that neither of us feel quite ready to even approach. What is so apparent for me is that this event has changed us forever, and that what once seemed like "givens"....working, teaching, friendships, family...all of a sudden have new significance and meaning.

For many of the decisions...When should Richard go back to work? What should that look like? When should I start teaching again?...it has been difficult to even look at them. We are so anxious about the answers...but we really don't have all the information needed to make good decisions at this point...and finally decided that we were being premature in even attempting to begin designing what any of that should look like. We need to meet with the radiologist and the oncologist before any future planning occurs. For us, that is hard. We are two very capable people...waiting is such an effort because we are so responsible and ready to get back to normal.

But I realize that "normal" for us does not exist anymore and that even with all the horror of the past weeks....there have been so many wonderful lessons and blessings that have led to changing our "normal" forever. I have a new "love" for my husband and for our relationship. In a short time...it has become so strong and deep. I am filled with passion for this man. I have learned more about his spiritual depth and his goodness. I cherish him and I cherish the magic that is our relationship. We have something very special here. My new awareness only makes me want to treasure our moments together even more.

My priorities have changed. What I deemed as important just a few weeks ago has shifted...not dramatically...but enough so that, at times, I feel as though I have lost my footing. Or maybe it's just that I have come to appreciate the meaning of each single foot step. I want to notice each moment wth a new clarity. I have, for so long, known that I was missing the details in my life...but I didn't know how to approach the change that was needed to bring them into focus. Now the change has occurred and I am thriving on the quiet, the being, the tiny fragments that lead us to our "whole".

And...today I am aware of a new "opening" to the other people in my life. Through the many blessings of our family and friends I have learned that being vunerable and loving isn't scary; but seems to be a necessary part of my breath. Service to others, putting to rest the differences, letting go of the turmoil seems like the pulse of where I am now. That makes everything look very different.

Our life is so strong this morning. The thread that weaves between us and reaches out to all of our loved ones is so golden and sparkly. It is with a new found amazement that I am finally seeing the importance of the "now" and the need to live it fully. We are so "living" with this new challenge....it truly is all a miracle.

Back from Seattle!

OK, The trip went well, we met with Dr. Marc Mayberg, the surgeon who was still optimistic and encouraging about the treatment options for the future. He did confirm the my GBM was a stage 4, the most aggressive type and that statistically it recurred in 99% of cases. I replied that I understood that as a physician he needed to let me know the statistics, survival rates as such, but that I was choosing to believe that I am one of the statistics in the 1% in which it will not recur. He said " I'm with ya". He did reiterate that I was statistically in a very good position because of my age, health etc.. and that they had my tumor in the freezer and were going to use it to look at the DNA, genetics, etc for the future treatment options that may be needed. He was very good about the team approach and how the plans will unfold. The radiation and chemo therapy will start withing the next 3 weeks after the incisions are healed.

Pam, Sherri and I played with the model brain in Dr. Maybergs Office while we were waiting. Here is a shot of Pam with a life size right temporal lobe. Since we have been home, both Sherri and I have reviewed the visit with Dr Mayberg and we both feel, given our strong belief in the power of thought, we are both approaching these next few weeks with optimism and a focus on holistic health, (physical, emotional and spiritual). We are doing everything we can to approach this next phase with strength and a positive outlook. We ask all of you who follow this blog to join us in our deliberate intent to live a life that is cancer free and full of love and compassion.

After our appointment, we followed our post stress protocol and went on a Hunt for our most favorite food. We ended up at Cafe Flora, our favorite vegetarian restaurant in Seattle. Here we are enjoying our appetizer of yam fries waiting for the main course. (I had Portabella mushroom Wellington).

A big thank you to Emily, Pam and Betsy for the rides. It was a good day!

Love to All..

Richard

On the road again!!!

This morning we are getting ready to go to Seattle for an appointment with Dr. Mayberg. The plan is to have him look at Richard's surgery site and also to have him go over the pathology report in detail with us. We are hoping that we walk away with a plan for radiation and chemotherapy. I'm feeling anxious about getting started with this next step as soon as possible. It feels like it is "looming" out there....again....another unknown.

Yesterday was an interesting day for me. Being in the "caretaker" role (which I feel honored to be caretaking my wonderful husband) I am struggling with how to also take care of my own chronic illnesses (Type 1 diabetes and rheumatoid arthritis). At this point, my illnesses seem rather insignificant; however I know how imperative it is to stay strong and healthy myself in order to keep things going smoothly.

Tuesday was my monthly chemotherapy infusion for my arthritis and it is not unusual for this medication to make me feel very tired, a little nauseated and probably (honestly) a little grumpy. Richard woke up yesterday morning feeling wonderful and he began making his "to-do" list that included errands and many little chores around the house. I took a deep breath and began the errand running with him, trying to hang in there and be a "trooper". It seemed like the better he felt.....the more tired I felt....until finally I had to tell him what was going on with me and I had to lay down to nap and rest for a couple of hours. I felt so bad!!! This time is about Richard.....and what is going on with him; however my body was not going to cooperate.

The good news is that after my rest I was able to get up and be fully ready for action; but I did have to marvel at the change in our relationship since Cancer has become part of our lives. Richard has always taken care of me.... I am the one that was suppose to have the critical health occurence in our lives. It seems like every plan, every decision, every step we have taken in our marriage so far has been made with the possible consequences of my illnesses in mind. The tables have sure turned and I know that this change has added to the stress of this situation. And frankly and humbly....it has slapped me around a little in terms of realizing that this is NOT all about me.....but that it is about Richard.....it is about us, our family, our friends. This has been one of the biggest lessons of these past three weeks.

Last night as we said our "Good Nights" and as he reached for me....moving us into our favorite "spooning" position....I felt that now familiar lump in my throat and tightness in my stomach. These first few moments of "bedtime" always seem to take my breath away. This is probably the time when I get the most frightened about our future. Often, as I feel him sleeping, I get so overwhelmed that I have to get out of bed and find a way to get away from the darkness. I cherish sleeping beside him....and am always anxious to return...but until I can calm down my mind....there is no way I can contain my feelings. It is getting better.....I am quickly learning ways to cope.

I am learning, in depth, the art of living in gratitude. When I get afraid I move to a place of thankfulness and my agitation shifts to a feeling of wholeness and peace. I continue to marvel at my many blessings. I have love, faith, warmth, and truth in abundance. This journey is full of moments of awe.

Love and light to all of you!

Sherri

Tides have turned!

Wednesday the 10th, I woke up to a greatly reduced CSF pocket on the right temporal area! Great.. the MD at Swedish told us it would! I am much more comfortable without the large, tight pocket of fluid there on my face.

As you can see in the photo today, the swelling on my right is hardly noticeable!.

So the next step, possibly a big one, is tomorrow.. our follow up visit with the surgeon Dr. Mayberg at his office at Swedish. Not sure what info this visit will bring, but will update tomorrow evening. I am feeling GREAT today and looking forward to the day. Yesterday brought more visits from Angels, Sherry S. stopped by with wonderful homemade soup! I can hardly wait for dinner! Yum.. (yes, I am still on steroids). Thank you Sherry! The only physical issue that bothers me is the site of the arterial line in my left wrist. It was removed at discharge, but has continued to hurt.. the area is not swollen or red, but the artery hurts to touch and feels lumpy for about 8 inches up from the insertion site at the wrist. Kind of aches all the time.. I have tried warm, moist packs throughout the day yesterday which feel good when they are on there, but makes little difference after.. Probably one of those issues that will resolve itself over time. I will definitely bring it up with the Dr. tomorrow.

With love to all..

Richard

The "dam" is holding!!!

As Richard has written, we've had a wild past few days. I love the pictures he posted. I think they truly show why I have been so anxious, distracted and well.....crazy......watching that pocket slowly fill.....& then start leaking which was quite a horror!!!! But my brave husband was, as usual, so amazing... thanking the doctor for doing such a good stitch job (the man really hurt him with that stitch job!!!), assuring the nurse that she was absolutely great, supporting Dana as he turned white with the prospect of having to watch his Dad get stitches (I sent Dana on many errands while the procedure was being done) and remaining talkative and funny with both my sisters (who gave us rides home) even after 9 mg. of morphine. The man shines in the middle of his own gruesome crisis'!!!! I am so proud of him!!!

Today the pocket has filled back up with liquid (something we were told would keep happening until the pressure at the tumor site equalizes and stops oozing). This afternoon he's been very quiet and on our walk today he asked if we could slow our pace down and then we came home early. Of course this scares me....my husband is such a strong man who always pushes himself to go faster, go farther. I know that the man just had brain surgery a little over a week ago and that being weak, quiet, confused are all things that are to be expected. And I know that this is a temporary thing but the whimpy part of me gets really frightened.

I've decided, though, that I need to use gratitude at times when I'm feeling afraid. Fear can become immobilizing and totally take over, producing such negativity. Refocusing on all the things that we have to be grateful for has gotten me through some really rough times. And we have so much to be thankful for.

Well....I'm off to put my feet up and try to do something "normal" like watching a little T.V. Is T.V. watching "normal". "Normal" still feels like maybe that isn't what I should be doing....but watching his lump grow feels very nonproductive.

Thank you for all your continued support, prayers and light!!!! I can feel the warmth...deep in my heart. That is what I am hanging on to.

Best Possible Outcome (photo's not for the squeamish)

That was quick! Sherri and were home by 7;00 PM (thought she had to do another hour at Walgreen for a prescription..

Here is the latest, Friday afternoon, I went to my primary here in Bellingham and had these staples removed. As you can see there is some swelling on the inside of the incision area. This is the surgical site. After the staples were removed, the swelling started to increase. I told Sherri and Dana that I thought I might have a CSF (Cerebrospinal Fluid) leak.

Sherri , My son Dana and gathered Saturday evening and determined that it might be a good idea to mark the edge of the swelling area in order to determine if and how quickly it was continuing. Nice line job Dana! As you can see in this shot, an area in font of my ear had started to drain.. and drain it did until Sunday morning when it literally had been running down my neck, and dripping off my chin all night. We called Swedish Neuroscience who told us that w should come in to have it checked.

So here I am with Sophie the Chocolate Lab in the back on our way. I needed to keep tissue in place to absorb the fluid as it ran out.. My sister-in-law Jodie' long time friend, Marilyn was kind in taking us to Swedish on her way home
.

My nurse Erica checking the situation..

And her handy work to catch the leaks... very pretty!

So, end of the story today is the best possible outcome.. After the possibilities of lumbar spinal drains, re-opening my head to fix the leak.. it was determined that we should simply sew shut the leak and send me home!. Yeah.. so after and a very painful stitching job (with no local anesthesia because of the close proximity of CSF) we were on our way home!

Here we go again.

Being a nurse, I am trained to look for surgical complications.. Starting from when the staples were removed on Friday, I have noticed some drainage coming from some of the staple sites which has developed into a stream of what appears to be CSF (cerebrospinal fluid). The pocket on the side of my head has gotten larger over the last two days so after spending the night with this fluid dripping of my chin, we called Swedish Neuroscience who recommended that we come down.. So, plans are in action.. Will update here as time allows.

Richard

A quiet morning!

It's very quiet here this morning....I am learning to treasure these times when noise, activity, plans, to-do lists aren't part of our experience...but rather we just sit and rest in the moments together. I am learning to breathe deeply at these times, to open my heart and to just be silent (a task not easy for this hyperactive person). I am learning to stop and be present for Richard, for me and for us. And most important....I am learning to listen. Richard has so much to say, to share, to express....but as we walk on this journey I am learning that none of that can be accomplished unless I stop and listen with clear intention and openness.

Yesterday was a little rougher than the days before. Richard experienced more pain, swelling and uncomfortableness around his surgery site. He woke up with these complaints quite early in the morning and of course that sent me on a mission of high alert. In the late afternoon we saw our primary care physician and she conferred with the folks at Swedish. We will stop tapering his steroids, will give the pain meds. as needed and will watch him closely. We made an appointment to see Dr. Mayberg down at Swedish next Thursday and he will check Richard out, carefully, then. Thursday seems like a long time from today...but I'm beginning to accept that their sense of urgency and ours are very different. Gittel did remove his staples (amazing!!!) and that has helped Richard feel much more comfortable.

We did have some wonderful angels visit us yesterday. My really good friend, Cindy came over for tea and it was great seeing her. Emily stopped by with fabulous news about seeing a financial aide counselor at Whatcom (something we've wanted her to do for a long time) and shared with us her plans of returning to school. That made Richard and I very happy!!! She was also preparing for her Mom's50th birthday party. Richard was very ready to give her his cake decorating advice....and so she left us prepared to make the best birthday treats ever!!!

Later in the afternoon my older sister, Barbara, and her husband, Don, came to visit from Seattle. I love being with them so much. We don't get to see them very often and their time with us was quite a treat. After our doctors appointment we met them and my precious Mom at Anthony's for dinner. We had a celebration meal centering around the theme of "Good-bye Tumor". Richard was in heaven. He loves seafood and he literally moaned with pleasure as he ate every bite!!! Even with the medical tension hovering, he was able to enjoy a wonderful meal and good company to the fullest.

I put him to bed very early last night. He seemed so far away in his own world that I felt lonely and unsure of things as I walked away from our bedroom. Watching a loved one suffer, trying to comfort, assessing at all times his health status, hoping that I am doing things right... can be a daunting task. I know that I can't do much about this physical disease but I also know that through, love, compassion and dedication I can truly be part of Richard's emotional healing. I want to do that so badly.

I hope that everyone is continuing to enjoy this blog. We truly want to share this journey with you. Thank you for your continued thoughts and prayers. You are always in our hearts.

Blessings,

Sherri

I stand corrected!!!

Last night, after Richard read my post, he came and gently put his arms around me for a hug. He held me for a moment and then whispered in my ear, "Honey....remember.....I HAD brain cancer....but last week the doctors removed all of that tumor and I DON'T have brain cancer anymore!!!". Simply said, I stand corrected! I am so full of joy and gratitude for having this wonderful man in my life!!

Thoughts at the end of my day!

The days are moving so quickly....life seems to be somewhat of a blur. Richard is recovering at a miraculous rate. He's making healing from major brain surgery look incredibly easy. I'm constantly amazed as I watch him doing some difficult task.....fixing our computers, paying bills, listing items on e-bay, making decisions regarding what to do next, driving our car without any problem (yes....the doctor said it would be fine as long as he was seizure free!!!!) and walking over a mile. There are moments of struggle and change, which we have both noticed, but given that it has only been a week since his surgery he is doing great.

Sometimes I like to pretend that this all is a horrible dream....I can do that for maybe 30 seconds....but then reality lurks near....as I feel the catch in my throat, the tears behind my eyes, the awareness that I seem unable to breathe deeply and I have to move forward in my thoughts of what do I do now to support my husband, our children, our family, our friends through this horrid diagnosis of brain cancer?

Because Richard promotes such a strong message of the power of positive thought, I usually feel strong and sure about our future. I know the level of determination that this man has. I know how smart he is. I know how loving and caring he is. Through his example I have begun to see the power that we all hold. I only need to remind myself of the many miracles that have already occurred in both our lives that bring us to this place, to know that everything will be OK. I'm so willing to do whatever needs to be done to create one more miracle.

However, it is not my tendency to be ALWAYS positive and sure about the outcomes in my life. My beliefs are quite new in comparison to the years of practice and study that Richard possesses. I am still having to constantly remind myself of who I really am. I am always working on staying in the moment and moving toward light and sureness. It isn't easy. I struggle and I'm determined to be real here and everywhere throughout my life. I believe I owe that to this process. It is my way of honoring what is happening here to all of us.

I guess for tonight this is all. I'm very tired. Last night I slept on the couch. I couldn't sleep and I was very antsy. I didn't want to bother Richard with my thrashing and decided that the couch was the perfect spot to rest and yet be near to him. Tonight will be better. Thank you to Catherine (Richard's boss) for visiting us today. We were both touched by your warmth and compassion. And also thank you to Joe and Karen. They brought Stanello's pizza for dinner. Richard has been craving it and enjoyed every mouth full. We love you both very much. We are continuing to count our many blessings.

P.S. The nice thing about being told such a HUGE piece of information that seems so horribly devastating is that it is pretty mind blowing. You catch yourself doing the oddest things. And....if you have a "different" sense of humor like I do.....it all can be pretty darn hilarious in a pretty odd way. Thank God, as I get older, I have begun to accept the fact that I see the world through a very different screen and I have learned to sort of enjoy the quirks in my own reality.

Here is one hilarious thing that has happened so far.......I'm afraid that if I don't write it down I will forget it....and that would be awful to forget something so funny!!!

I call this incident the "Always check your jeans carefully before you put them on in the morning" caper. One morning, right after the diagnosis, Dana (my step-son) and I ran to the doctor's office to pick up some medication for Richard. In my haste to get the medicine that Richard needed as quickly as possible, I ran in our closet and slipped into the pair of jeans I had worn the day before. As we left the doctor's office with our medicine in tow, a woman passed Dana and I and she said, without making any eye contact, "I believe that you may of dropped something." There, laying on the floor in a little heap was a pair of my dirty underwear!!!! Right in front of my beautiful step-son lay my own "old lady" pair of dirty underwear that must have been stuck in the leg of my jeans!!!! What a moment....for sure!!!

Walk in the Park

As we live only a block from one of Bellingham's most beautiful large parks, Cornwall Park, Sherri, Mali, Jazzy and I have been taking advantage of sun breaks to walk a simple 1 mile loop around the park. It has been a beautiful experience especially with the the changing colors of fall really setting in. This is me withe the dogs hearing my new REI Gortex hat which very effectively kept my balding head and the many attached skin staples dry for our walk yesterday. I love it and really enjoy the fresh air, the smells and of course the companionship of these dogs which are so happy to join us. At home Mali (the retriever) will occasionally come over to me in my chair, lay her head in my lap and just stand there.. I can hear her asking, "are you OK?, Can I take you for a walk?" So sweet. For you dog people, you know that there is nothing like the love of a dog.. I am so happy that Dr. Mayberg told me "Walking is GREAT.. do as much as you can". And I am thankful that my sweet in laws Jodi and Richard Arnold took me to

REI to find my wonderful new hat.. nothing worse than rusty staples.. ;-) With Love to all.. Richard

A quiet moment in our day!!!

I've been waiting to write in our blog all day.....but I've felt a little emotional today and I was waiting for that to pass. I've been trying to decided whether our postings should just be happy and positive or if it's OK to share some of the struggles that are also part of this wild ride we find ourselves on. I just decided that "real" is probably the most important thing to share. That "real" might help all of you understand where we are in our daily experience.

Richard is in the living room right now, reading and resting after a wonderful trip with my sister and brother-in-law to REI. We were on a mission to buy Richard the perfect hat. It seemed important that after brain surgery we find him a special hat to cover his poor little head. We actually found two! Richard was thrilled and is even wearing one in the house claiming that he loves it so much he just can't take it off. We were both touched that Jodee and Richard were willing to come and join us on "the hat finding caper"!!! Thank you to them for making both of us smile and feel cared for.

I've been watching Richard closely today (OK I've been almost constantly watching him for over two weeks now) as he moves from one activity to another. At times he seems so restless, strolling from room to room...touching treasures we've collected, looking out the window, coming to stand next to me for just a minute. At other times he seems like the old Richard...working on the computer, reading, writing, napping, playing ball with the dogs. I guess he is settling into a rhythm of recovery. I am observing and supporting in the best way I can.

I know how important it is for me to give each of us space and time to pursue our interests and to be alone. Thank God we each of interests that can continue even when we are home and quiet. I know that Richard must continue to have a strong voice in everything he does. And I know that his independence will lead to healing throughout this ordeal.

I think my own emotions are coming from learning how to stand beside him as we move through this immense disruption in our lives. I am sad that my husband is suffering both physically and emotionally. I am sad that he is having to stop working for a while and that some of his activities are being curtailed. And.....this is the worst.....I am so damn afraid.

I am often overwhelmed by Richard's beauty and courage. I am so proud of this man. His heart, his love, his compassion is so pure...he truly is a miracle. I am watching him move through this experience with an enormous strength. What an honor it is to be his wife. My eyes fill with tears as I remember all the times he has told me that he isn't frightened, that he is at peace, that his intention is to beat this. But at the same time he is so willing to show me a vunerableness that is precious and tender. He isn't afraid to cry as he is touched by all the loving gestures that people have shown us since the diagnosis. He isn't afraid to sob as he shares his pain. These are the daily blessings that have become part of my life.

I'm doing the best I can. In a surprising way I'm amazed that it hasn't been hard or horrible. When I feel myself challenged by something...I ask myself, "What would love do?" and then I find my way.

Thank you, to all of you, for being there for us. I feel you out there caring.

Blessings, as always,

Sherri

Hurry Home Richard!

Quiet morning for me.. up at 5:00 for some reading, writing, thinking.. listening to the inside of this quiet time of a rainy fall morning.. I love it!. I can feel the love of the souls that have surrounded me with love over this past few weeks.. I am touched beyond words with the depth of love and compassion that surrounds me. Thank you all!. I feel confident and strong with you at my side.

Yesterday was a fun filled day that has been the cumulation of a dream of mine for over a year now. As those of you who have followed my "Trader Joe's" saga, you know that I have been a big fan for may years and started a personal campaign to bring them to Bellingham several years ago. I know that I was only one in this cause and that together we succeeded as they opened the largest and most requested store in their history last Friday, Sept 28th.. As you can imagine, I was planning on being at the opening, but because of the tumor dropping into my life.. was going to miss it!. However, because of a beautiful angel in my life, my dream was able to come true on opening day after all. Thank you Gail.. I will always love you for that gift.. Here is a photo that she sent me n that opening day. Honestly, when I saw it, I could not stop crying for about an hour! Yesterday, Gail, Betsy and Sherri all took me to the store where we browsed and shopped for all the unique and special items that I have been dreaming of. The first of many trips to come.

With Deepest Love to All

Richard