To Be Robbed of Dreams

I’ve always been the more social one in our relationship. I tend to make friends pretty easily and see everyone as a potential friend. Is this normal? Paul, on the other hand, is not quite as social although it may seem that he is to others. With his illness, however, he has a difficult time socializing because after all he’s been through with radiation to his brain, chemotherapy and a number of other medications, sitting and chatting with a few friends or family members leaves him feeling frustrated. He has windows of time during the day that he feels “normal”, but they are few and far between. Being someone who has always been schedule oriented (he’s a retired teacher), he has his day figured out from morning to night time, and manages to get through the day on this schedule. After some initial trial and error, he has discovered that eating helps his “brain fog”. I am his meal planner, and his meals and snacks are packed with protein and vegetables. Some days he is more alert and much like the man I fell in love with. Some days he just can’t seem to get his head to be clear. Weirdly enough, after dinner, he is the most clear for the evening. That’s about a three hour window of a clear head.

This is wonderful, but it doesn’t leave a lot of time for visitors who want to see him. Having always been a worrier, he gets pretty anxious days before leading up to the visit and worries he will not be focused enough to engage with people he cares about. It’s difficult for me, because I NEED to see these people and mostly have had to go outside of my home to see other people. That’s okay, but we have this great house near Cape Cod Bay which is a wonderful place to have overnight guests and hang out, but for the past year we’ve had no overnight visitors. We have our immediate family, of course, but no other family members, like my sister and brothers and their spouses or our friends we used to have here. I miss it. I miss hanging around, going to the beach, making dinners, going out to dinner and just socializing. I miss Paul. I miss myself.

There is nothing to do about it, because it is part of this disease. It strips you of a lifestyle you’ve grown accustomed to, it zaps your energy and strength, and leaves you feeling less of yourself everyday. It’s like you are isolated, both patient and caretaker, in a bubble where the whole world is revolving at one pace, and you are on hold in the same place. Yes, we have many, many blessings and we are so grateful for the life we’ve had together. Yes, we count our blessings every day. Yes we have love and a wonderful family. We are thankful for all of it.

BUT, WE also have CANCER and it is a thief, robbing us of all we’ve worked for and dreamed about.

Knocking on Heaven’s Door

I will begin by saying that they mean well. Those friends, strangers, relatives etc., who are trying to relate to what you’re going through to show you that you are not alone. They talk about their loved one and the horrific experience they went through with their mother, father, grandparent, friend, co-worker, child, spouse, etc. For some reason, however, if the ending to their story is a negative one, I really don’t want to hear about it. I’m in the middle of “limbo” with my husbands’ Cancer and I don’t want to hear what the possibilities are right now. I know what is ahead of us, I’ve read the research, I’ve heard the tales, but why must it be reiterated to me every time the subject comes up?

As each person’s tale unravels before me, I totally get when it didn’t end well and I don’t want to know about it. I see the expressions on their faces. I see them needing to tell it, to make it real and to aid in their grieving. I GET IT!!!!

I’m sorry, but please keep it to yourself. Rarely do I hear what I want to hear. “He has been Cancer free for seven years” or “the doctor’s couldn’t figure out why it disappeared, but it did”. “She is running marathons now” “His life has completely turned around”. These are actual stories I’ve heard and there are many more. Unfortunately, the sad endings outweigh the happy ones and I know immediately when the tale isn’t going to end well, and I don’t want to hear it. I don’t want to hear about the pain, the suffering, the length of time it took, how awful it was, about the funeral, about how when he or she was opened up they found it “everywhere”. I don’t want to hear how young or old they were. Or that because they were old it was a “blessing”. I don’t want to hear how the family dog would not leave their side or that the morphine made them say and do things they would be embarrassed by. I DON’T WANT TO HEAR IT ANYMORE!

It happened yesterday with a stranger. She rattled on and on and I wanted to say. “Did he survive?” Before the words came out of my mouth she spewed the news with graphic details and said it was “so quick”. I’m sorry for you and your family, but I am living in a nightmare where each day I watch the person I love diminish in so many ways. I don’t want to know that he is knocking on heaven’s door right now. I DON’T WANT TO KNOW! Besides, we are all knocking on heaven’s door, aren’t we? Can we just do it in our own time frame? I am holding on to every second I can be with my love. I am not ready for all the things that are possible. Please be kind, be supportive, be comforting, but do not tell the sad tale to someone who is in Limbo hoping for a miracle.

“Caretaker”or “Caregiver”

"Care taking" or "taking care" are odd phrases
You can't "take" care from someone, but you can certainly "give" care
Or is it the person who is "taking care" from the  "caregiver"?
Odd, isn't it?  To use the words "give" and "take" in the same way.
He wants to "take care" of himself, but cannot.
I want to "give care" to him and do so willingly and lovingly as his "caregiver "and his "caretaker".
Then there is the phrase "look after".  Again...what an odd phrase.  Am I "looking after" Paul?
I was "looking before" at Paul, so what does it mean to look "after?"  Does that suggest that he is gone?
I really am asking myself these questions.  The English language is so unusual sometimes.
At any rate, I will "look after", "give care", "take care", "mind" (uh, oh, there's another one), and "tend" my
husband's every need because he is the love of my life and I would walk to the end of the earth with him.

Naturopathic Oncology

When one is literally faced with life or death decisions, choices are made with the utmost care and a very thoughtful yet challenging process. This was our experience when my husband, along with my blessing, decided to move forward with Naturopathic Oncology to integrate with his current Cancer treatment.

A decision like this one is more than difficult because there are so many people around you with so many opinions. You hear a large variety of various experiences with family or friends who have been through Cancer either themselves or with a loved one. It’s mind boggling how many people have been connected to someone with Cancer.

My take on the talk of Naturopathic Oncology has been that it is a positive life changing experience for most people. I have heard several stories about people who were at death’s door and come back to life with the Naturopathic route, and are now Cancer FREE. I have yet to hear of any bad experiences. Maybe those stories don’t come forward because people don’t want me to hear the negative side. I truly don’t know. But hearing the positive results from so many made our ears perk up and we couldn’t not try it.

To be honest, we are playing with time here, and some real money (insurance is a no go), so we are really taking a chance with our lives on so many different levels. We have to believe that we are doing the right thing for Paul and nothing else can matter right now.

Speaking of the “right thing” it is my belief that doctors don’t really know what is exactly right for every single individual, and they rely on their experience, along with trial and error when treating patients. They also know full well that what works for one person may not for someone else, and visa versa. It is with this mindset and the first hand experience of our good friend also going through Cancer, that we decided to move forward with a more natural route, knowing that it may be trial and error. We feel that it is worth the risk. She had been on the program for awhile now and her detailed account the positive effect on her “numbers” were amazing. She looked and felt vibrant and alive. It was enough for us. We thought it would be worth a shot.

Thanks to our successful friend, we also knew what to expect going into the first appointment and how daunting the first few weeks would be. Not only is there a overflow of supplements specific for him and his Cancer, but there is a complete diet overhaul. As the “kitchen manager” at home, having a diet change was a bit overwhelming at first. We were healthy eaters, or so we thought. Fortunately, I had already begun a big change in my own diet for health and weight reasons, so it was somewhat compatible and not a complete nightmare. I decided to view it as a fun and creative adventure!

The Naturopath Oncologist, after examining my husband and viewing his medical information, provided a highly detailed booklet made just for him which outlined every supplement and why he was going to be taking it, as well as all of the foods he could and could not eat getting started. No sugar, no grains, no fruit (turns to sugar), no beans, no carbs, certain vegetables, no dairy, specific spices, and nuts, seeds, fish and animal protein. Protein, protein, protein! The hundreds of supplements were a bit astounding at first, but thanks to our friends’ experience and help, we expected it and dove right in with a very organized approach.

Our diet now consists of organic foods, grass fed beef (for him, tofu for me), certain wild fish, almond milk, nut butters, nut cheese, and a whole foods clean approach to living. You’d be surprised what has sugar in it. It’s amazing! I’ve always loved to cook and have a creative mind, so I’ve been whipping up all kinds of healthy goodies on my own and with the help of the internet. I know how to modify recipes and add a little extra this and that for flavor. We are only on week three for him, but things are going well in the kitchen and with the supplements. Paul is a champion supplement taker. Thank God! He never complains and is amazing.

We are concerned about weight loss for Paul, because he had lost a total of 75 lbs overall since February of 2018. He has only lost a few pounds so far in this new process which is expected at the beginning, but should be leveling off. It takes about 3 – 4 weeks to actually feel the benefits of cleaning out your body of all the old toxins and making room for the new healthy nutrients.

Our hope is that Paul will find new energy, his cancer medication will truly have room to do its job without all the unnecessary toxins in the way, his Cancer medication side effects will wane, and we both will benefit by living a clean and healthy life from now on. Hopefully this regimen will help to take away many of the other medications he’s had for past issues as his body gets healthy and can then attack the Cancer full time. This is our hope. We are taking it a day at a time. It is also our hope that moving forward, Paul will someday not have to take his targeted Cancer medication anymore and will be Cancer FREE.

I will leave you with a poem :

by Lynne Johnson 

Your Body is ... complex
   with intricate pathways
cells and neurons
   plasma and fluid
veins and vessels.
  it is lymphatic and circulatory
it is unique and it is Yours

nourish Your Body with Hope
   send life to it's chambers
feed your cells
   love it's soft, fluid, ever changing system
changing continuously...
   breathe Hope into yourself

Life is for the Birds

Today is a very foggy day on Cape Cod. As I look outside my window, I see the variety of bird feeders and birdbaths we’ve recently put in our yard, filled with many of the most beautiful New England birds we’ve come to love. Oh yes, I keep a list. The birds fly in and out of our yard giving both Paul and I a lot of simple pleasure. We call the morning breakfast shift “the bird show”. It’s amazing to watch and hear. It’s quiet in our neighborhood most days, and around 8 am every day we can only hear the various melodious songs and urgent calls of the local birds. I think the birds know we need to see their beautiful colors, and to hear their gorgeous melodies. They breathe life into our quiet existence and take us away from whatever challenges we might be experiencing in our world of Cancer.

What makes me infinitely happy, is seeing their willingness to sustain their lives by searching and finding the sustenance they need to survive. They are forever vigilant on their perch or branch, making sure that they are not going to be swooped up by a hungry predator and they make courageous attempts to get seed, suet and water, all the while knowing they are in potential danger. They work so hard to make sure they feed themselves, their partners, their community and their young. They have a schedule, a method, a determination and they are on point every day working to sustain their lives. Life is therefore, for the birds. I am trying to take a page out of their feathery book by working harder to sustain life for my husband and myself in only the best way possible. Life is a gift and we need to be vigilant at our perch.

Life on Loan

“None of us are getting out of here alive, so please stop treating yourself like an afterthought. Eat the delicious food. Walk in the sunshine. Jump in the ocean. Say the truth you’re carrying in your heart like hidden treasure. Be silly. Be kind. Be weird. There’s no time for anything else.”
― Anthony Hopkins

Tonight I return from a overnight theater trip into Boston with my sister. As I reflect on the wonderful time we spent together, I am reminded why I chose this special experience as a gift for her 70th birthday. It had to do with time. We have so little of it in life and I wanted to share some precious time with her experiencing something we’d always remember. Time is inestimable and should be treated with respect.

When my amazing father died in a tragic accident in 1984, I was 24 years old and my adult life had really just begun. I was still figuring things out for myself. His sudden death was a completely overwhelming and sobering experience. One day we were laughing together about some joke he heard on t.v. and the next he was gone. I learned then that life was short and something we have on loan.

When my husband received his cancer diagnosis, I was reminded once again that we come into this world with no guarantees are only allowed to exist on this earth for just so long. We come with an invisible expiration date and it’s only a matter of how and when we will move on. So, when Paul first received the dire news about his cancer, I figured his time had come. After all, the Radiation Oncologist said “You should get your affairs in order. Take care of the business of dying so you can go on living.”

Although we understood she was trying to be helpful, the words wrapped around us like a shroud in a tomb. That once familiar overwhelming and sobering feeling simmering on low for all of those years, had returned with familiar force. I knew it was only a matter of time before it would rear its ugly head. Here it was staring us both in the face. I say both, because when you love someone as completely as I do my husband, it is happening to me as well as to him.

Here’s the upside, if there is one. All of those years ago when my father died so suddenly, I learned a grand lesson. “Life is short and you have to live it to the fullest.” Fortunately, in the thirty-four years Paul and I have been together, we’ve done just that. We have loved each other unconditionally, raised a wonderful and loving family, traveled a little bit here and there, made a living doing what we love in the arts, met some wonderful and talented people, have close family and friends whom we cherish, and we moved into our dream house on Cape Cod. We’ve enjoyed each other tremendously and learned a lot of invaluable lessons along the way. We may have even taught some valuable lessons to many along the road as well. Oh, don’t get me wrong. No life comes without some darkness. We’ve had our share of trials and tribulations, but we have been together and have loved each other through every curve in the road.

Tomorrow marks one complete year since we walked into the doors of that Urgent Care facility so Paul could have an X-Ray. As we sat in one of the doctor’s offices and heard those words “get your affairs in order” a few weeks later, we thought Paul’s expiration date had arrived. Although Cancer has come to us like a thief and robbed of us the life we worked so hard for, still, one full year had passed. We didn’t think we’d be where we are right now. Every day for Paul, and for us as a couple is a blessing. Make no mistake about it, I am by his side through every detail of this disease but Cancer hasn’t taken everything away from us.

As I say to Paul, “it’s not over ’til the fat lady sings”. Since he is a voice teacher and a music director, I believe he as the power within himself to decide when that performance or concert will take place.

Learning A New Language Called Cancer

The thing about Cancer and the medical world is, if you haven’t had to navigate your way through it before, it’s like learning a new language. It feels like you are in a foreign country where everyone seems to know what is going on but you.

You see, my husband has this large mass atop his right lung which was spotted in an X-Ray in an Urgent Care Facility almost exactly one year ago. How and why it was detected is a whole other story which I will tell you now.

Paul seemed to be slowing down a bit in the months leading up to our findings. He was slowing down on our walks, resting more and I just assumed he was “buying in” to the fact that he had turned seventy and was “getting old”.

Around Christmas and perhaps even before that, I had noticed that when he sat in this particular chair his neck looked a bit larger. I was thinking that it was probably because we had been enjoying the food of the season and maybe he had put on a little weight or that the chair didn’t have good head support. It was not so noticeable that it made me really think anything more about it, but every once in awhile, I would think “hmmmmm”.

As the New Year came along, I began to notice that his face seemed a bit puffy or swollen, particularly on one side and mostly in the morning. I thought he should check in with a doctor. He didn’t notice it at all and thought I was crazy when I brought it to his attention. It got better as the day went on so he didn’t feel the need to go. I also noticed he was sighing a lot when he exerted himself. I would ask what was the matter, and he attributed it to allergy season etc. I bought it because he has allergies and the seasonal allergies were different on Cape Cod than when we lived closer to Boston. I urged him to have it checked out. When the swelling seemed to get worse on the right side of his face, and his eye was very puffy, I finally called the doctor myself and set up an appointment for him.

I went with him one evening and met his new doctor who decided to treat him for a sinus infection. A little time passed and it got worse. Paul went back a second time thinking his medicine wasn’t working because the swelling had progressed. The doctor added a medicated nasal spray. No changed occurred with the nasal spray.

Next he began waking up with purple colored ears. Then purple spider vein blotches appeared on his chest. Paul didn’t even notice them and there were many. We were in the bathroom together one morning when he appeared from the shower and I saw all of these blotches and was quite alarmed. Paul still didn’t see what all of the fuss was about. One more trip to the doctors occurred to show him these blotches, and the doctor looked at his recent blood work and said that there was no indication of any problems. He didn’t seem concerned.

When he woke up one morning with a very swollen face, purple blotches on his chest, purple colored ears and a purple colored hand, I got extremely concerned and turned to Google. I typed in “purple blotches on chest” under Images. Up popped two pictures of a man with a swollen face and the time stamped on the bottom of the picture as 7:30 am. It showed a second picture of him looking like his normal self. It was very similar to Paul. There were also pictures of purple spider vein blotches on his chest strikingly similar to Paul’s blotches. Then I saw the letters SVCS. Superior Vena Cava Syndrome. “Superior vena cava syndrome (SVCS), is a group of symptoms caused by obstruction of the superior vena cava (a short, wide vessel carrying circulating blood into the heart).”

I called an RN I knew who I had been talking to about Paul’s unusual symptoms and she seemed a bit alarmed when I told her what I found. She said that he needed to go to Urgent Care right away where they would be able to do an X-Ray and that I should tell them what I thought it was. I called home to let Paul know what I had found and that we should be going to Urgent Care that very day and he agreed.

X-Rays were taken. A large mass sitting atop his right lung was found. Our learning of a new language had begun.

(if you read my first blog “Without Our Permission”, you will learn what happened next.)