Ebb and Flow

It’s been quite a few weeks since my last public update. For those who have been on this journey, I suspect you can relate when I describe our journey having several personalities. Sometimes it feels like we are riding a roller coaster, sometimes we’re using cruise control, sometimes we hover in a holding pattern. I would say these last few weeks have been a little of each.

Dialing back to 7 weeks ago, HP wrote to family:

“The Brain MRI provided some great news. Apparently the pills are working. The doctor said that there are no new lesions. Some lesions are completely gone. None are growing. Some are shrinking. Amazingly good news. I feel very lucky and grateful.

My blood work was great. Still don’t have the EKG report. They did X-rays today as the doctor was concerned about a cough I have and hoarseness. She didn’t think it will be a problem but thought it is good to just check.

I told the doctor about all my side effects, and most can be attributed to my pill. She thinks that eventually they will dissipate. Anyhow I will put up with anything as long as the pill is working.

Judi and I are thrilled with the news and feel so blessed right now.”

dialing back to the first week in February, HP wrote to family:

“I had blood work and a PET scan on Wednesday and then saw my Oncologist and had a Zometa infusion on Thursday.

First the good news: the new pill is not only working on decreasing the cancer lesions on the brain. The PET scan showed that the lung tumor is shrinking; the areas of the bone metastases are actually healing, and no new signs of any metastases. Amazing!

BUT…..the PET scan also showed inflammation in both lungs. It is causing me to have problems breathing. The doctor said it could be something caused by the Opdivio I took before I started getting treatment in Houston, or it could be caused by the Tagrisso – the drug that is warding off the cancer. My doctor is very concerned and has told me to stop taking the Tagrisso until they figure out the reason for the inflammation. The doctor said the inflammation could cause serious, long-lasting problems. I will start taking prednisone today and they are setting up an appointment to see a lung specialist next week.

I’m very worried again. Not happy I have to stop taking this miracle pill. Here is something that is making me better and I have to stop. 😢 The doctor will not know if i can take it again until I see the lung doctor and the steroid has done its job.

I’m really hoping i can start back up with Tagrisso. Or something just as good. But who knows? Don’t know if the doctors will have more tests for me. I’m in limbo!”

As I re-read our family updates written in January and February, I am re-experiencing the feelings we felt in real time. January, in hindsight, was the cruise control part of the journey. Early February, in hindsight, we hopped back into the roller coaster car.

Today, we happily observe HP’s lung inflammation has been resolved by prednisone. His breathing is normal. It is a very welcomed relief. And, talk about energy levels! His appetite is tremendous. HP continues to feel great with enough energy to run circles around most of us. There are not adequate words to describe my happiness that comes from HP feeling great. Today, we hover in a holding pattern.

It took us a bit of time to process the news from February’s visit. That included moments of sadness and anxiety, followed by meditation and just simply enjoying our time together. Inner peace has returned as long as we stay in this moment.

Today is a new day. This week is a new week. Test results are available online and, this week, we await a phone conference with the oncologist to put it all together for us.

We send all of you, our travel companions, bushels and bushels of love. As I write this for you and me, may we remember ebb and flow are very real. Each will continue to visit. When in ebb, I forget flow. Simply said, I cant see her, even when I am consciously, deliberately looking for her.

It’s hard to see when on a roller coaster. Everything is a blur. Until the roller coaster car comes to a stop. That’s when I shake my head, blink my eyes a few times, and then realize Flow never left my side. And, hand-in-hand with Flow, inner peace cautiously tiptoes back into my sights. And, then I can write again.

I Believe in Miracles

Early in December, I wrote about the difficult news we received via the patient portal, at 7:09 pm Thanksgiving Eve. We processed a lot of emotions. Hope wasn’t one of those emotions. HP and I surrendered into the awareness that his cancer had crossed the blood brain barrier and was now doing its incessant thing in almost all lobes of his brain.

Intellectually, we knew it was time to begin down the path of getting our things in order. Well, we talked about it, anyway. We didn’t really do anything about it. We knew that would be our first priority after we got our emotions together. Looking back, we remained in a daze until we started our trek to Houston. I found my way to the space of surrender and back into the arms of my best invisible friend, “Flo”. That’s what I do when I’m not in control.

On December 5, HP, Martine and I went to the Denver airport together. She introduced us to an awesome, healthy restaurant at the airport, Root Down. The airport restaurant is a scaled down version of the one in downtown Denver. It was a nice, healthy way to begin a tough week at the Cancer Center in Houston where we would learn about whole brain radiation. We traveled with questions in our mind and possible options. One option was to just say no. To let life and cancer unfold, doing our best to hang on to quality of life as long as possible. One option was to quiet the mind, and just listen. Once I had all my questions written down, that was an easy option for me.

Prior to 7:09 pm Thanksgiving Eve, HP was feeling very good, emotionally and physically. The cancer center had eliminated his Opdivo-induced colitis. He was gaining weight. With each day of recovery, he was returning to the good health he experienced on our road trip. That’s all I was wishing for, for us to get back to feeling the way we did on our road trip. Saying no to whole brain radiation, perhaps, was one ounce of control we could exercise in order to hang onto quality of life. We were prepared to not budge from our mantra, quality of life.

Our Cancer Center visits began with a talk with the radiation doctor. Wow, we were very impressed. I jokingly said that if there is one doctor you want to have knock your socks off, it’s the brain radiation doctor. She convinced us no was not an option. As that discussion was winding down, we asked if she had seen the results of his liquid biopsy. She said she had not and attempted to look it up. For some reason, she nor we were able to access the results (remember the blog about the elusive biopsy results?). The results remained elusive. And, then, the radiation doctor said something that perked us up. She said, “the results could be a game-changer”, and from her expression and tone, I knew it was a possible good game changer. She left the room. Because we didn’t know what she was eluding to exactly, Martine, HP and I went back into the mode of processing the decision of whole brain radiation. We agreed it needed to be a reluctant yes.

The next person we saw was the nurse to take vitals. She mentioned that the pharmacist was coming in next. This was a new one for us as the planned lineup was to see the oncologist first. After the nurse left, we looked at each other and I asked, “did she say the pharmacist is coming in?” “Why the pharmacist?” It seemed a bit out of order for the lineup. HP and Martine didn’t register this as I did, so I quickly and easily convinced myself I had misheard the nurse.

In a few minutes, the pharmacist yes indeed arrived. She was ending her shift soon, so she was inserted into the lineup to tell us about the new drug HP would be going on. It was either mentally or out loud, I truly don’t remember, I said “whoa whoa whoa”. What new drug?” She said his liquid biopsy gave them the info they needed and HP qualified for a new chemo in pill form. “So does this mean he will be on chemo and whole brain radiation?” She said no, that the drug affects the cancer in the brain and in his body. No whole brain radiation? Correct, no whole brain radiation. This was breaking news. The decision of the medical team quickly turned from brain radiation to a daily pill. The elusive biopsy turned up the marker we needed! We knew no was an option. We just thought it was our option. We just didn’t anticipate no being their option.

Next, the PA came in. I honestly have no memory of her discussion.

It’s now about 4 or 5 pm. Next, the oncologist came in. She was all smiles. She had on the cutest cowgirl boots, and she and her boots were walking on air. There wasn’t much left to discuss after radiology, pharmacy and PA. We had our miracle.

The 3 of us walked back to the hotel. I asked HP what he was feeling. He said he was still processing. Due to the crazy traffic in Houston at 5:30 pm, we walked back attentively and quietly. We got back to the room, HP and I hugged each other and he said, “this is f*ing unbelievable.” We now know from this experience that miracles are blankety blank unbelievable, unpredictable, and are not to be controlled. They “Flo” in on their own timeline.

Fast forward, HP has been on the miracle drug, Tagrisso, for one month. He heads back to Houston tomorrow for his first post miracle checkup. He is having a few side effects, but nothing like the side effects of previous treatments. For now, we continue to bask in the afterglow of the miracle that unfolded ever so profoundly.

We send this with much love. Hope for quality time together has returned. This has been ___ unbelievable, and we are so very happy.

We Will Always Be Here For You

Since my last blog post, October 23, 2018, our Unplanned journey took a turn. I mentioned in my last post that one of Howard’s cancer “treatments” took him down a path that was simply not sustainable… life threatening colitis, and our former cancer clinic suggested he double up on Imodium. I knew taking Imodium, double dose, for the rest of his life was not a sustainable option. We learned it was not only unsustainable, it, too, was life threatening. I asked if the colitis would eventually go away after his body adjusts to OPDIVO. The answer was, “it may not”. He proceeded to receive the scheduled OPDIVO treatment. His condition worsened. He lost weight he didn’t have to lose.

I turned to a well renowned cancer hospital. Our timing couldn’t have been more divinely orchestrated. With one phone call, within 2 hours, we had an appointment. I must have called during a slow time (pre-Thanksgiving) or perhaps they had just received a cancellation. I don’t know why it was so quick, but HP and I were stunned. This took a little processing, but we enthusiastically said yes. We got our flights, lodging and began packing. We were at the Clinic the next week.

Getting the medical records transferred did not go smoothly. Not knowing if they would actually have the records prior to our first appointment, I reconstructed a chronological timeline from our calendars and numerous patient portals. There was some benefit in walking down memory lane. It was amazing where our steps on the Unplanned journey had taken us, only to be buried in our memories with each new event and path. On our drive to Denver airport, the Clinic called and said they received HP’s medical records. I was so happy, my voice screeched in her ear.

As one can imagine, the first appointment consisted of walking through the medical details and my timeline of the past. The new medical team needed to reconstruct his past before they could look to the future. Standards blood tests, MRI of the brain and PET/CT scan were ordered and completed. A follow up appointment was set. Thankfully, for the weekend, we were able to retreat to the Galveston area to stay with HP’s relatives. It was a very special 2 days. HP cooked Sunday dinner after visiting the fresh fish market. ❤️

After our special family time, we flew home, rested one day, repacked and drove to Guffey to celebrate a late Thanksgiving with family. But not before learning on thanksgiving eve, via of his patient portal, that the lung cancer had crossed the blood brain barrier. We were devastated. In shock. I left 2 voicemails with the Clinic, one before thanksgiving day and one after. I accepted the electronic results and was thankful they did not hesitate to let us know what is happening even if it was the day before Thanksgiving. Years ago, I started developing a love for transparency. As I thought about it more, I became grateful for the Clinic’s transparency. What a test that was to my belief. I still feel the same. We kept rereading the results. It was only the summaries we understood. Even though we have lots of practice acknowledging fear thoughts and shifting them to light thoughts, this time was different. Our fear, hurt, pain was deep and enduring. It was heavy.

In my last blog post, I wrote my thoughts that happy and sad coexist. Along the same lines, HP and I reminded each other that we need to experience our feelings fully. There is such a strong tendency to suppress and bury the dark. I’ve done it in the past as a coping skill. I’ll admit, this time around, it seemed like the best option. But an inner voice gave me permission to feel and experience it all with a gentle reminder from this voice, “just don’t dwell there”.

We relived the news by letting family and friends know. We relived the news in our minds. We seldom, if ever, thought about anything else. I asked HP if he had the energy to go through with our plans to visit best of friends in Atlanta. HP did not hesitate. He said, “I’m not going to stop doing fun things and making new memories.” We started the laundry and got repacked for Atlanta weather.

As it turned out, Atlanta weather was pretty much the same as Colorado weather. But it did not matter. We were with our friends who, over the years, have become family. We laughed, cried, reminisced, shopped, ate the best foods, drank the best wines, took pictures, went to the fanciest movie theatre I’ve ever seen, exercised (once 😊), and made the promise special friends make, “we will always be here for you, and we know you will be here for us, too”.

While in Atlanta, the PET/CT scan results were posted to his patient portal. The lingo we understand is in the summary, the cancer is active. Thankfully, we were still with our friends who experienced this news with us. Time with family friends has been a blessing.

Next week, we return to Houston. Our return date to Colorado is uncertain. We will consult with radiology and have our previously scheduled follow-up visit with oncology. They have hinted there will be more tests. Perhaps treatments.

This weekend, we will rest, embrace peace and love, and I will surrender to the divine flow. Come Monday, we will enter the week with renewed energy and have our Hearts, eyes and ears wide open. And today, our eyes see more special times with friends and family on the horizon. What a beautiful sight that is.

Thank you, family who are friends, and friends who are family, for your love and support on this journey. You have said, “We will always be here for you”. I feel the same about you all, “I will always be here for you”. May peace be ever present for all of us.

Our Unplanned Journey Includes Polishing Rocks

Happy moments coexist with sad moments. Happy and sad moments are Great Moments. I am coming around to an understanding, truly understanding this, and learning to give equal amount of respect to the opposites. While listening to a podcast this morning on healing and thriving with cancer, a speaker/patient/survivor said, “Those who suffer have the wisdom. Whatever it is we are given, the friction of life will erode us to our beauty by living through it.”

Howard and I are getting a fair amount of time in the cosmic rock polishing tumbler. On the other hand, we also spend a fair amount of time living and shining. Like we did on our 4,000-mile road trip. A good friend said cancer didn’t exist on the road. And, it’s true. We continued to seek out natural food stores and restaurants. It was fun, because high quality, alive, humanely raised, organic ingredients are now our chosen lifestyle. I will not ever go back to my old ways.

Cancer didn’t exist on the road for a couple of reasons. Howard felt wonderful and full of energy. My caretaker’s calendar was empty. We had no driving to appointments for diagnostics or treatments. Instead of driving to clinics and cancer centers, our driving was from one, it can’t get more beautiful than this, place to another. Each night, I thought that if I didn’t see one more thing, it would be all right, because today’s beauty was the most beautiful. And then we went to Banff and Lake Louise. Again, I couldn’t imagine anything more beautiful. Then came Glacier National Park. Howard and I were living and shining in our tumbled, polished selves.

As you can imagine, returning from the free flow of our road trip to a calendar-driven flow was not something I looked forward to. And, truthfully, it has been one struggle after another now that we are back on the cancer climbing path.

Also in the podcast, the speaker mentioned, “To be broken doesn’t mean one should look at all things as broken”. Broken and whole coexist. Sickness and health coexist. I admit, I have been known to want to repair broken. I have been known to want to heal sickness. I think that is something I want and need to do as a caregiver. The shift for me, today, is to love the harmonious existence of these opposites. Can I get there? With the help of the rock tumbler, I believe I can and will.

Since returning from our trip, HP has been experiencing persistent colitis symptoms. He has lost some weight he didn’t have to lose. Although, I believe wholeheartedly that weight isn’t a great metric for health, it is something we pay attention to each morning. More importantly, though, are nutrients. Is his body actually absorbing the good nutrients that we so carefully shop for and prepare? We have been on a reconnaissance mission for 5 weeks with no conclusion. At first, we thought it was likely something he picked up on the road, something viral or bacterial or a parasite. We are awaiting test results.

Last week, we met with oncology to prepare for his routine OPDIVO and Zometa treatments. As we were letting her know about HP’s colitis symptoms and weight loss, she suggested that he is not ill due to viral or bacterial exposure on the road trip, but rather it is likely the OPDIVO.

You could have pushed me over with a feather. Why? Because the obvious had not occurred to me before. How did I not think of this as a possibility? My knowledge (mind) and intuition (heart) didn’t go there. That possibility was routine for them, but I processed it as awful news. And, you know me, I’m super in tune to the belief that it isn’t typically the cancer that leads to death, it is complications from the “therapies”. Back into the rock tumbler I went.

Crying.

Realizing what is out of my control.

Anger.

Helplessly crying.

Validation of my beliefs.

Speeding ticket (38 in a 25) right outside Rocky Mountain Cancer Center while my mind was in total despair.

Fear.

Now, I gladly crawl back into the tumbler. I’m still tumbling and not ready to come out yet. I suspect this one may take a little more polishing.

In the meantime, HP will receive his OPDIVO and Zometa tomorrow. Our integrative medical team (oncology, naturopathic) will be on speed dial. Oncology expects more colitis and recommends double doses of Imodium (which is fine for now), but we know that doesn’t heal his body, allowing him to absorb maximum nutrients.

Between HP, our naturopathic doctor and me, additional weight loss is not an option. It is simply not a sustainable course.

Can chemical-induced persistent colitis and high nutrient intake coexist? Only time and tumbling will tell.

To be continued.

From Mount Everest to Space Mountain

As you have lovingly experienced with us, we migrated north from Costa Rica one year ago. It took almost the entire year for mental and physical conditioning, but we made it to the top, symbolically, of Mount Everest. 12,029 feet to be symbolically accurate. I don’t mean to take away from every single step of the 12,029-foot journey, where physical, mental and emotional muscle was built, but it was at 282 feet above seal level where the magic happened… Space Mountain and Magic Kingdom.

This was the trip of a lifetime for Bhaki and Chevy.

Sidestep… We are not sure how to spell Bhaki. It is a name given to HP from Chevy. We googled it. Should we be spelling it Bhakti? Bhakti is mentioned in the Shvetashvatara Upanishad where it simply means participation, devotion and love for any endeavor. HP participates in life fully; is a devoted son, brother, father, husband and friend; he loves each endeavor the universe gives him, even when it is unplanned. So, maybe Chevy had this inner knowing about his Grandpa and the best name for him.

Going back to, this was the trip of a lifetime for the 2 of them. Bhaki is a natural-born teacher. It is in his Purdy genes. HP loves to plan, especially trips. Chevy’s Mom, Martine, has an insatiable appetite for research and knowledge. Along with Bhaki and Martine, Chevy planned his first trip. He researched all the options at Disney World. Bhaki gave him the parameters. Martine gave him access to the tools. It was an amazing team effort. And, presto, an itinerary was born.

Chevy and Bhaki were off and running on July 17. It was on the plane and at Disney World where the itinerary made the leap from paper and came to life. And as life goes, the experiences of each moment of each day adds up to being our most precious memories. Disney World, Bhaki and Chevy-style, was an amazing relationship builder/enhancer/sustainer. It was an act of Love that now goes into eternity.

Continuing to live life to its fullest and with lots of heart… and then a little more. ❤️

Feeding the Soul

The unplanned journey continues.  HP is feeling quite well, overall.  His energy levels have been great since his last chemo treatment (January).  May his outside health be a reflection of how well he is doing on the inside.

Recent PET scan results show a decrease of bone disease in some areas, an increase in others, and some new spots.  There are 2 areas of pain that are constant reminders.  This week, we have started down the radiation rabbit hole, again.  He will have his right shoulder area radiated next week, 5 treatments.  The second area is his left hip, the one that was replaced and radiated within days of his replacement surgery.  Because of the radiation occurring soon after the surgery, the orthopedic doctor thinks the pain is a result of the surgery not healing properly.  His approach will also include pain control… a steroid shot.

HP remains on his regimen of traditional treatments, prescription drugs and supplements.  The regimen, as a whole, is designed to slow the growth of his lung cancer tumor, the spreading of cancer stem cells, and manage side effects.  From our vantage point, it seems the regimen has worked very well.  He also receives a Zometa IV once every 6 weeks for bone strengthening purposes.

There will be changes to his regimen very soon.  In addition to the upcoming radiation, steroid shot, prescription drugs, supplements and Zometa, he will likely receive IVC therapy.  You’ve probably heard about this kind of treatment, high doses of Vitamin C via IV.  We receive more information about this path tomorrow.  Also, the oncologist gave us 30 days to consider using an immunotherapy drug called OPDIVO.  We are seriously considering this as another piece of the puzzle of warding off growth and spreading of the disease.  We hope oncology will allow us to add OPDIVO without compromising the regimen that has had so many promising results.

Nutritionally, we remain 80/20 Keto and some vegetarian meals.  HP goes to the gym and is rebuilding muscle and strength.  He often comments about how well he is doing today compared to the time (October 2016) when he had his first hip injury while playing tennis.

In the “feeding the soul” department, we are both doing very well.  We go about this 2 entirely different ways.  For HP, he feeds his soul through planning travel.  HP has planned a fun trip with Chevy – just Bhaki and Chevy time – at Disney World.  Then, we will head out on a birthday road trip.  It will begin with Yellowstone, then a family wedding in Boise, and off we go, exploring.  No reservations.  No agenda.  After that trip, it is very likely he will go to Peru for a 10-day wellness retreat (it may end up being a 31-day healing retreat).  Travel planning is well underway for a big, bucket list kind of trip in 2019.  Thailand and Vietnam.  Our travel-planner-friend, Isa, is helping HP put it all together for us, and what a joy it is for him to do what he loves… Design-plan-execute.

In the last article, I wrote about accepting what is.  I’m still working on it.  HP is there.  I have yet to arrive, but I feel closer to acceptance.  If I fly up 100,000 feet and look back to observe, it seems quite simple…  our lives are a series of Now moments… learn to let go of attachments, surrender… and, finally, accept what is.

We still have a ton of Now moments to live, love, learn and serve.

Together.

Thank you, friends who are family and family who are friends, for being with us every step on this path.

Accepting What Is

It seems that everything I’ve read, watched, studied – every speck of knowledge from the past – has led me to today. I guess that shouldn’t be a surprise, having the sense of understanding that what we focus on today becomes our reality tomorrow. With each a-ha moment, download during times of meditation and silence, pure divine intervention, prayer and answered prayer, cumulatively, they have equipped me to process and handle the most challenging situations.

The most recent challenging situation has put us on a new path, the path that you all are walking with us. We are all spread out, around the world, but I don’t feel the physical distance. I feel your heart energy.

Today’s journey is about accepting what is. HP and I will continue to make healthy choices, balanced with living-life-our-way choices. We have had deep, heartfelt discussions about bucket lists, desires, needs, approaches and strategies. Looking back, I am very happy we have navigated these waters with a sense of ease, knowing, trusting. Best of all, there has been great comfort in knowing that we share an undying love for each other and life. Forever.

With each conversation, we get closer to turning the corner, and around that corner I think we will find acceptance. I said to HP today that we will never look back and regret living each day to the fullest. Being able to do this, wholeheartedly, I believe is dependent on learning to allow certain thoughts to visit, and being able to sit together with those thoughts in peace. With acceptance comes peace and from peace comes living life to the fullest.

The saddest times for me is when I allow my mind to think of the way we thought our futures would be. For as long as I can remember, HP and I have been totally in love with the thought of retirement, traveling around the country in an RV, traveling the world and growing very, very old together. The attachment came when we repeatedly thought and talked about our futuristic dreams and, with each time, it became a belief, an expectation. The loss of that belief creates a reason to grieve. It seems to me that the loss of thoughts that turned into a belief can lead to the most intense of grieving times.

Being a perpetual student of life, my inner voice tells me today’s teacher is telling me the importance of letting go of attachment to old thoughts and beliefs, things and people and learning to transform the energy reserved for attachments into the energy needed for accepting what is.

Living life to the fullest…. Judi & Howard