We have hope again in our family as sweet Mila has completed her 22 radiation treatments and she is doing well! It’s been a whirlwind starting a new job and taking Mila to daily radiation with the machine going down at times adding to delays and more stress. Cancer cannot and will not define and rule our lives. We continue to live and be healthy trying to survive in a world where we are simply unsure as to what causes cancer and/or what can and cannot be done about it.

This time of year also brings hope, the holidays. My beautiful parents whom I love dearly came to see us for Thanksgiving as they usually do all the way from Seattle with my Mom in great pain because she has to have hip surgery very soon. They came to visit us back in May before Ken passed and also for Ken’s celebration so they have visited now three times in less than 6 months. Since I started a new job I will not be visiting them for the Christmas Holidays but it’s a good time for refocusing and concentrating on work and my family’s health.

We had the traditional Thanksgiving meal complete with a farm raised turkey, no antibiotics, hormones, etc. and I was only able to eat one piece of meat. Some healthy habits remain which is good.

I saw a film awhile ago that touched me deeply that I wanted to share. I rented it from our local library, The Hedgehog based off of a French book entitled “The Elegance of the Hedgehog.” The story revolves around Paloma, a serious and highly articulate but deeply bored 11-year-old who has decided to kill herself on her 12th birthday. Fascinated by art and philosophy, she questions and documents her life and immediate circle, drawing hilarious observations on the world around her. But as her appointment with death approaches, Paloma finally meets some kindred spirits in her building’s grumpy janitor and an enigmatic, elegant neighbor, both of whom inspire Paloma to question her rather pessimistic outlook on life.

A quote from the film “We are all hedgehogs in life, but often without elegance” reminds me that we are all prickly on the outside and that we really don’t see or know people inside. It is also a touching love story and I absolutely love hedgehogs.

I am constantly told how strong I am, that people think I am strong but deep down I do not feel that way. One thing that I am sure of is the strength of love and the love that Ken and I shared and that I have for my family. I wish the world cared more deeply about love, relationships, and community vs. an emphasis on accomplishments, work and getting ahead. I just finished reading the book “The Art of Hearing Heartbeats” which moved me because of it’s love story. Love is really all that matters. Without this life would be a very solitary place without purpose and feeling. Sorry to be so philosophical but being alone I have a lot of time to think about things and what really matters.

On the caregiving side here are a few things which might help after your loved one has passed:

Establish a routine, make simple decisions, practice mindfullness and breathwork and quite simply focus on the now to take time to heal. The pain of death will never go away. Here is a nice quote my friend Mandy posted recently on facebook I wanted to share…

“The thing Is
to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hand,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weighs you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.”

Ellen Bass

I wanted to provide an update since I started my new job. First of all, I’m loving it! Today I played ping pong with one of the creatives. I haven’t written in quite some time because I’ve been taking the time to settle into my new job and to come to terms with what’s new with my family.

Mila after radiation treatment

One week before I started my job, my baby Mila’s veterinarian phoned to say that she has squamous cell carcinoma and the prognosis did not look good. As you can imagine, I felt helpless and thoughts rushed into my head similar to the time that my dear Ken was diagnosed with that awful word, cancer. So yes, my poor feline has cancer at the age of 14. The good news is that our vet called a veterinary oncologist who said he believed that Mila had a 70-80% success rate with radiation. I was overwhelmed with hope and happy that my Mila could have a better quality of life and live longer. I had never heard of success rates with cancer. Of course, the treatments are expensive but she is my baby and she deserves this care. Dr. Hamilton of the Georgia Veterinary Specialists is one of the first veterinary oncologists in the country and he’s here in Atlanta, how lucky could we be?

The first day I took Mila in for radiation, the second day of my new job, I sobbed because it reminded me so much of Ken and when he started radiation treatments. They are so similar, the staging, protocol, timing, everything – how could I not remember? My point here is that cancer is everywhere, even affecting our dear pets and loved ones. Thankfully, I joined a company that recognizes that pets are family members and they have given me great leniency with coming into the office and working from home.

The only side affects from the radiation are being tired from the sedation (she has to be sedated each time) so it’s like she’s going through a mini-surgery every week night in that I have to take food away from her and she can’t eat until the procedure is over. This affects Pickle’s life too, our other family feline, and I’ve decided to join them and not eat breakfast until after Mila’s treatment is over.

I can’t believe that we are going through this again but Mila has been extremely brave and has made me hopeful. Life tests you and all we can do is try to persevere and live day to day taking what is thrown our way.

I went to a restorative yoga class tonite and saw a reflection on the ceiling that reminded me of a shadow of Ken laying down while he was receiving pranic healing. The shadow is from prayer flags hanging from the ceiling. A prayer flag is a colorful panel of rectangular cloth often found strung along mountain ridges and peaks high in the Himalayas to bless the surrounding countryside. Prayer flags are used to promote peace, compassion, strength, and wisdom. The flags do not carry prayers to ‘gods,’ a common misconception; rather, the Tibetans believe the prayers and mantras will be blown by the wind to spread the good will and compassion into all pervading space. Therefore, prayer flags are thought to bring benefit to all. When I looked closer at the ceiling I saw rays of light coming from the figure. It made me weep with sadness remembering my sweet Ken and missing him so badly when Hector, his pranic healer, spoke of Ken and that he saw rays of light and energy emanating from him.

It will be five months next week from his death and it still feels so surreal. I continue to answer emails from this blog to try to help others affected by this horrible cancer.

It’s been quite some time since the last post and this time I have some positive news to share – I got a job and will be starting a week from Monday! They flew me to DC last week for a day of interviews and I was thrilled to meet the team and learn more about the company.

I found a special gift from Ken this week while I was cleaning & waiting to hear back about the job. Inside a metal pill case on a tiny scroll Ken had written, “I’m so proud of you. I know you did great! I hope you get the job but if FATE has other plans, so be it. I’ll always Love You.” I absolutely believe Ken is here in this house with me and he led me to find that tiny pill and open it, what a gift! It was strange coming home and not being able to celebrate with him. This is my new normal. However, I have great friends and family and I celebrated with my neighbor Alice and her kids last night.

Ken’s Pill Gift

I have been spending a lot of time cleaning and preparing the house for my family’s arrival at Thanksgiving. I am SO happy they are coming to visit. People have said that the cleaning is healthy, a way of purging and having some control over my life. I also found voice memos Ken had recorded on his phone. He must have left one on the trip to Mexico before his initial seizure in which he said quite simply, Move to Mexico. Another one focused on making big changes in his life, a testament to his spirit to fight like hell!

My sweet kitty Mila had surgery this week to remove a tumor she had on her chin. We won’t hear back the results until next week. All day while she was gone I couldn’t help but worry and it brought back the pain and memory of hospitals, Ken’s surgeries and terminal illness. I’m hopeful that her results will be normal and that she will not have cancer.

The new normal involves routines, cooking all meals, walking, cleaning/purging, my daily practice of yoga and of course thinking of my sweet Ken. I can’t believe it’s been four months now. I know that he would want me to succeed in my new job and to carry on. I am bound and determined to make him proud of me.

There will be a Miles for Hope Brain Cancer walk in two weeks and Tina & Patrick Little will be walking and honoring Ken, team name Gray Matters. I’m hoping to Join them.

Miles for Hope Brain Cancer Walk

Healthy Food & Lifestyle

I wanted to share the story of how Ken initially came to write the blog. We rented the movie Anticancer by Dr. David Servan-Schreiber from the library and it tells the amazing story of how he lived with brain cancer for almost 20 years (he was diagnosed by accident when his friends gave him an MRI).

His personal story, Anticancer tells us:

◊ Why the traditional Western diet creates the conditions for disease and how to develop a science-based anticancer diet
◊ How and why sugar and stress feed cancer and ways to achieve life balance and good nutrition to combat it
◊ Why the effects of helplessness and unhealed wounds affect our ability to restore health
◊ How to reap the benefits of exercise, yoga, and meditation
◊ How to minimize environmental toxins
◊ How to find the right blend of traditional and alternative health care

We watched the movie late at night and Ken cried afterward (Ken does not cry often) saying “I want all my friends and family to know about this because they can maybe avoid cancer by watching this movie.” He proceeded to stay up late crafting what would be this blog to help others and share what he learned – http://www.anticancerbook.com/.

I think it’s important to bring the focus back to food because it is so important to our health and well being and also lifestyle. We DO have a choice in our everyday decisions that impact our health. For those afflicted with GBM seeking out the Ketogenic Diet could greatly improve survival time and help to control seizures.

Valcyte

I also read an interesting article on a breakthrough brain cancer treatment that Dr. Charles Cobbs in Seattle has been using which shows great promise. He found that cytomegalovirus, a common virus that infects 50 to 80 percent of adults by age 40, can cause brain infections in newborns and patients with a compromised immune system.

Cobbs’ hunch was verified in 2002 when he started testing cancerous tumor samples from patients and found every one tested positive for cytomegalovirus.

“It was jaw dropping at the time,” he said. “These were the dark years. No one believed a virus could cause brain cancer.”

Many, in fact, did not believe Cobbs claims until years later after his findings were confirmed by researchers at Duke University, MD Anderson Cancer Center and UCLA.

A treatment plan

Working under the assumption that brain tumors were somehow associated with cytomegalovirus, Cobbs considered whether the antiviral drug valganciclovir (Valcyte) –  typically used to treat the virus in AIDS patients – could help brain cancer patients survive.

While the median survival rate for glioblastoma is typically just 15 months and only 15 to 20 percent of patients live for two years, 90 percent of Soderberg-Naucler’s patients on Valcyte lived for at least two years. Even more exciting for Cobbs and Soderberg-Naucler, the median survival rate of these patients was 56 months, or just over four and a half years (link to article http://www.komonews.com/news/health/Doctor-brings-breakthrough-brain-cancer-treatment-to-Seattle-223645961.html?m=y&smobile=y)

I would like to share what Ken’s pranic healer Hector had to say about his last visit with Ken two days before he passed. He emphasized that it was so peaceful sitting next to Ken and that he required a peaceful setting. He sensed that Ken’s energy was leaving his lower extremities moving up from his legs toward his head. It was very spiritual in that his soul was already preparing to withdraw from the crown of his head and the light and energy was brighter around his head. He also sensed that Ken was aware of those around him and of his surroundings. Ken was sleeping most of the time at this point answering questions with a yes or no.

He saw orange light, his aura, around his arms and legs which was the energy used by the soul to eliminate the body. The orange prana, (cosmic energy believed to come from the sun and connecting the elements of the unierse. The universal principle of energy or force, responsible for the body’s life, heat and maintenance, prana is the sum total of all energy that is manifest in the universe), helped to facilitate the focus on the head area. Ken’s spirit was finding an exit point from his body. Hector explained that Ken is not his body and that his spirit may remain in the house and with me. He said he was at peace and accepting of his current state and what comes next. He felt that he was reflecting, reviewing and spanning his life.

It was very powerful to hear Hector speak about Ken, his energy and soul and what happens next and to hear that Ken was in a good state.

I posted the picture above of Ken leaning over the bridge from our walks in Deepdene. As I walked through the forest today I played the Manowar heavy metal version of Nessun Dorma, the aria from the Puccini opera, on my headphones. Ken listened to this song frequently in the last few months and it was also played at the end of his celebration . I lingered at the spots we shared along the path, the bridge in the picture and the benches where we sat together. Of course, I cried because the song itself is beautiful but also from the memory of hearing Ken play the song, playing it the night before he passed in bed and then again at his celebration. The words are quite meaningful too, translated, None Shall Sleep:

Nobody shall sleep!…

Nobody shall sleep!
Even you, o Princess,
in your cold room,
watch the stars,
that tremble with love and with hope.
But my secret is hidden within me,
my name no one shall know…
No!…No!…
On your mouth I will tell it when the light shines.
And my kiss will dissolve the silence that makes you mine!…
(No one will know his name and we must, alas, die.)
Vanish, o night!
Set, stars! Set, stars!
At dawn, I will win! I will win! I will win!

Tomorrow marks the 2-month anniversary of Ken’s passing. I haven’t had the strength to write about what happened yet but feel it is time now. Hospice was not there for us toward the end in fact the whole point of hospice seems a mystery to me now. They keep calling me to see how I’m doing, probably to check in and make sure I’m not going to complain about their lack of service. I had to insist that a hospice Doctor see Ken at first because I was told that wouldn’t happen for 3 months. After the Doctor saw Ken he agreed that Ken could benefit from physical therapy to help him use the devices; cane & walker. You have to be assertive with them in order to get what you need. They won’t help you when you need them the most, i.e., with helping to lift your loved one off the floor. I was told when I called the hospice emergency number after Ken fell early in the morning by the nurse that she was 5’2 and she would come but that she didn’t know if she would be able to help. She first asked if I had another family member living with me who could help. I replied that if I did I wouldn’t be calling!

Hospice isn’t set up properly in this country to help care for loved ones in the end stages of life and they rarely understand brain cancer patients, especially GBM. At times, it felt like they were just “checking in”, checking blood pressure, temperature & watching Ken for an hour or so to see if and when he would die. When I really needed their help in the final week of his life of course at night it was always an issue taking the nurse an hour or more to arrive. When the nurse did arrive she asked where his oxygen machine was and that patients with his condition should have one. So, the next day I demanded the equipment and it came in the early evening (suction machine, nebulizer, oxygen concentrator, and oxygen tank). My hospice nurse showed me how to use some of the equipment, stating that “you won’t need to use this at this stage”, which was the suction machine and in fact I did end up having to use that machine that evening. When I called later that night because Ken’s breathing had changed dramatically after I gave him some oral medication the nurse on call was instructed to call my hospice nurse. She called me back & condescendingly told me that she had shown me how to use the machine earlier in the day and did I remember but we did not hook up all the parts to actually use the machine. Then the on call nurse phoned me back to say her supervisor told her that if I didn’t know how to use the equipment that they would send someone out in the morning to evaluate if Ken did indeed need continuous care or not. She also said that she would come out if I wanted her to and she did. When she arrived she admitted that she wouldn’t have been able to instruct me over the phone how to use the equipment and she could see how I would have been confused especially since I wasn’t a nurse and didn’t have any experience.

Oxygen machine

The next morning I awoke to a phone call from the clinical care coordinator responsible for getting Ken the compassionate use of the CDX-110 medication. I had emailed her the day before that I had wanted to talk. I took the call in the kitchen to not disturb Ken since we were sleeping together in the same bed downstairs. After she hung up I heard a large gasp coming from Ken and I ran to help him. I quickly turned on the oxygen machine and put the tubes in Ken’s nose never having done that before either. I heard another gasp and at that point I believe that Ken passed. I quickly called our neighbor who is a Doctor for advice and realized that everything had changed. I sobbed hugging him for several minutes, looked up at him and he opened his eyes to look at me one last time and then closed them. I felt it was his way of saying to calm down and that everything was going to be okay which gave me the strength to do what I needed to do next.

At that point, I immediately shifted gears and called who I needed to call so that friends and family could come see Ken. He had over 35 visitors that day and I’m so happy that they were able to see him in our home rather than anywhere else.

I went to a therapist yesterday and she told me that watching your loved one die is a trauma and that I’ve been going through trauma for the past two years time. Simply knowing that your loved one has a terminal illness does not make the actual death any easier when it does occur. The pain of losing a loved one will never go away and it should not be ignored.

We all come into the world alone & we leave it alone too. Being alone can be very awkward, especially when you’ve been with someone for over 20 years and the past two years for 24 hours a day. Caregiving is like this and it is absolutely necessary. A lot of people can’t handle the stress and they divorce and/or leave their loved one because they cannot cope with what lies ahead. I felt that people judged me when I made the decision to leave my job to care for Ken 100% but I know now that what I did was the most meaningful gift that I could give and receive from Ken. I don’t regret a single moment of any of that time and I’m so eternally grateful that I had that time to spend with him. Others are not granted that gift so I know how special an opportunity it was for both of us.

I try so hard not to sound too sad, ungrateful, etc. but I’m also trying hard to be transparent and honest in my posts after Ken’s passing.

I arrived home on Sunday to an empty house, except for my two loving companions Mila & Pickles. I gleaned the mail to find a UPS letter which contained Ken’s official death certificate. It seemed to put more finality to the situation. I also receive lovely cards and letters that help me to cope somehow.

I feel very lost & confused about what comes next. I thought that the trip to Hawaii would give me some closure and it didn’t. Don’t get me wrong, I was able to do something lovely with some of Ken’s ashes, but the pain hasn’t gone away but has intensified. I can’t explain it, but it is always there, gnawing at me beating me down about what I’m to do next or do at all.

I just miss my Ken so much, his touch, smell, voice, presence, laugh, smile and motorcycle purr. It’s absolutely so quiet here and I’m not inclined to go outside because I need to be alone, I’m not sure why. People keep telling me “to be kind to myself” and I’m still unsure of what that means. I know that life is hard and I am selfish for feeling the way that I do but I can’t help myself, I MISS KEN. He is never coming back and I don’t know what my life will be like without him. People say it takes time, but I’m also unsure what that means. Time will not return my husband to me, the love of my life and eternal soulmate that he was. I’m not interested in starting over or getting on with things. I guess I’m in a stalemate of sorts. Stuck in between different realms of possibilities. I feel lost and keep looking for Ken to guide me in my dreams.

I think that I felt the most sad on vacation when the monk seals swam away. Very happy sad but it reminded me of losing Ken. I was so strong that day, I don’t know where it came from, but now I feel that the stress is settling into my body and I’m trying to cope.

All that I can say and hope for with anyone reading this post is that you grab on to life, hug the people dearest to you and tell them how much you love them every opportunity you have, and to appreciate what you have now. Forgive and don’t hold on to hate or anger because it only affects you in this life now. Seep in every sunset, sunrise, day, night, watching the glorious moon and the opportunity you have to love and help someone else. If everyone followed this the world would certainly be a better place in which to live.

While packing I found money in my dolphin purse which we use to travel. I felt it was a gift from Ken and that he was taking care of me on my next journey. It was a nice way to start the trip.

1st day in Maui. Got 4 hours sleep after 17 hours of travel and drove in the dark up the windy & steep road to the Haleakala Crater which is 10,000 feet above sea level with Ken – this was important to me repeating the visit we made 10 years ago to see the most beautiful sunrise in the world.

Kebo & me

Running on adrenaline, the trek felt both special and extremely sad. I don’t want this post to be too negative but in some respects I don’t think there is any way to get around it. Yes, I’m in Hawaii so I should be extremely happy, etc., etc. but I am surrounded by honeymooners, old couples still in love & happy families on vacation. I did force myself to take this excursion in the hopes that it would give me a sense of closure and to do something special with Ken’s ashes.

I snorkeled for 2 hours at Makena Landing (left water-safe bag & snorkel map at house and fin strap broke at snorkel site). Instead of getting frustrated with so many things going wrong I didn’t give up & found a dive shop where they fixed me up with a new strap & some ziploc bags to store my keys. When I finally got in the water I saw a baby octopus & turtle. This gave me extreme peace as I feel most at home in the water. When I got home to the Star Lookout, I watched my first sunset without Ken & saw a pack of 20 apex deer (I felt the wind envelop me & brush past my left side which gave me comfort, it was Ken telling me he was here & to not be sad). Afterwards I went for a long walk with a full moon & passed Oprah’s property, simply beautiful. She had a rock wall constructed along the path which reminded me of England. While this may seem like a lot to pack into one day, and it was, I had to keep moving because when I stopped the sadness seared through me revisiting the spots we went to 10 years ago. Shopping for groceries alone, cooking & eating alone. It doesn’t get any easier being in paradise. But in a way I hope that it’s healing. Being in the water was the most healing part floating. Hearing a gecko squeak in the house, cows mooing in the distance. I feel so close to heaven, the sky, to Ken.

On Sunday I ended up going the wrong way to Hana thanks to GPS, taking the treacherous route and having to navigate passing tourist buses, backing up on one-way roads and bridges, whew! Made it safely to beautiful Hamoa Bay House where Ken and I stayed 10 years ago.

I got up early to avoid the tour buses and hiked the 4 mile hike up 650 feet to the 400 foot Waimoku Falls on the Pipiwai Trail. I stumbled upon the most beautiful 80-year old banyan tree & decided to place some of Ken’s ashes there in the roots at the base, it felt right. I also scattered some ashes along the walkway in the enchanted Bamboo Forest. Mind you this was quite difficult as it was raining trying to navigate doing all of this while not getting caught by other people or park rangers.

I don’t even know how or where to start about Ken’s celebration. What I can say is it was everything that I think that Ken would have wanted. We had a beautiful evening, the weather cooperated, we didn’t create any fire hazards and nobody was hurt.

We started the event with Ken’s closest friends & family carrying Ken’s ashes into the main room with background heavy metal music playing of course (“See you in Hell my Friend” by Grim Reaper). Next people shared stories about their experiences with Ken, what they thought of him & how much they will miss and love him. There was a consistent theme of Ken being his own man not caring what others thought & being a unique individual with everyone being a better person for having known him.

After the ceremony everyone gathered in front of our house for a neighborhood block party. I was stunned, well not really, at how everything came together. Tables were out, neighbors and family were putting on tablecloths and food and guests were bringing food and drinks. Lane & Matt’s red beans & rice dish was a hit along with John’s chicken fajita mix, Lynne’s fried croppy & Roger’s guacamole. As soon as it was dark, we lit Chinese paper lanterns in Ken’s honor that rose up to the sky even with the wind evading the trees to soar to the glory that was Ken.

Guests stayed up until 5:00 a.m. celebrating Kebo continuing the experience of sharing stories and love.

All my love to everyone who participated in the event, what a beautiful time it was. Ken would certainly have been proud.

**sorry it took so long to send this out. I was waiting on more photos and some video from my cousin in Laos which I will add to next post.