Moving right along through cancer

Just made it through immunotherapy nu.2

I am aware that many folks do not have the privilege that I have been given to experience that strange and painful adventure called cancer treatment.

Perhaps what I can “give back” through my experience is an onsite tour.

When I was told that my cancer had returned and metastasized into more lymph nodes, it was easy not to have to get my mind around it because I couldn’t feel any cancer brewing in my left leg. I went on “business as usual”.  However, the medical establishment would not allow that, I was scheduled for this test and that test, for this specialist and that specialist, etc. – all of whom gravely warned me that my life was now “hanging by a thread”! (Bob Marley died of acral lentiginous melanoma, which started in his foot. Thank God they haven’t offered to amputate my left leg!)

Suddenly, I got hit with a double whammy – strong bronchitis (or possibly Valley Fever), which turned into pneumonia, which ended up accompanied by dehydration (because I was drinking too much green tea to fight the cancer, and not enough just plain water). It’s easy to slip out of a proper balance!

No sooner was I pumped up with a whole new bunch of strong chemical meds, than I was sent in for immunotherapy. the cumulative effects (about which I had no clue what they would be  –  but they would be “out of this world”!

I felt like I had been dropped off onto an empty, ice cold planet in outer space. Sitting there, I contemplated what I needed to do to survive? Next steps become traumatically confusing when everything is on totally unfamiliar terrain!

Well not entirely. Having people like you keeping in contact with me, encouraging me (instead of blaming me), praying for me, helping me, etc. has been a little life raft that I could sit on and stay buoyed up.

When there is a physical upheaval and reality turns upside down, it affects the spiritual. I understand now the missionary who exclaimed that it’s useless to tell people who are starving to death that Jesus loves them and they must have faith (unless you’re starving with them!). It’s hard to accept the spiritual, when the basic physical needs are not being met. In my case, I’ve been going through a debilitating brain fog, which makes it difficult to get my mind around what I need to do next, much less do anything about it! It’s been impossible for me to write coherently or communicate coherently. Putting my thoughts in order becomes just too much to deal with (even being able to get into the Word and absorb it has been impossible. That’s been a tough one because getting into the Word and communicating with the Lord, is my source of strength). Turns out, the fatigue was coming from both the immunotherapy and some of the meds, so I got a double dose of it!

  By far the most frustrating part of it all is the fatigue. I never totally understood before how debilitating fatigue is. I am now humbled and repentant for being self-righteous and critical of folks along the way who I thought were pampering themselves, without realizing what they were probably really going through!

Today I had an interesting conversation with the Indian oncologist who does my immunotherapy. He told me that he’s had dreams where he was floating in a stormy sea surrounded by people hanging onto pieces of wood, desperately trying to stay afloat. Those pieces of wood were his tools of the oncological trade. It was all he had to work with. Then he said to me: “I know that you’re looking for a total miracle of complete healing. Well, it could happen. The PET SCAN / MRI coming up the first week of June will show that. But, just perhaps, the miracle you got is that your immune treatments have been accepted to be covered for the duration of the therapy schedule of one year.” In that case God wants to use us! Food for thought!

One important thing I realized is that I need to adjust my sensation of being stuck on an icy, distant, planet in outer space to include that I am still alive! There’s a sense of purpose included in that realization.  I keep forgetting that I’m not alone!  My enjoyment of creation has convinced me that a loving Creator created all of those planets (along with everything else) precisely for He and I to enjoy together. He is right there with me even in the strange and unfamiliar. In the past, He’s always instructed me what to do step by step to survive, so why would He stop now. Plus, He’s probably preparing the appearance of a spaceship to take me to the next new thing, when it’s the right moment!

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Lentigious Melanoma Journey – survival not guaranteed

Here now are some practical things I can share regarding my particular lentiginous melanoma cancer and immune therapy. I was diagnosed through a biopsy (some 25 yrs. ago) that I had psoriasis, an autoimmune disorder.

I am finding over the past two weeks that I’m having an autoimmune flare up on my scalp. I haven’t had one this intense for long over a year. Pain pricks and intense itching on my scalp. Also, the psoriasis on my face and upper body is also going through a flare-up.

I was informed, after the first immunotherapy treatment that I had been administered a steroid to lower the immune reaction. I don’t know if this autoimmune flareup is related to the immunotherapy drugs, or the steroid which was injected at the time of the treatment, but is no longer affecting my immune system (which is overstimulated).

“Brain fog” (ie. Mental confusion, inability to carry out basic procedures in my daily life, a daunting feeling that I can’t handle this task, “I can’t do this” not being able to organize even my basic to do list. Not being able to focus on priorities that need to be done; then, not having the “umph”  to do them. I feel like the person inhabiting my body right now is not me!) How long will this last? If it’s going to be permanent, I don’t know if I want to end my life living with a dysfunctional stranger!

Fatigue: not having the strength to do even basic things (like going to the bathroom when it’s really bad, or doing basic chores around the house, when it’s present but not so intense). I find myself out breath for no reason. I plod along, instead of walking. If I manage to do a couple of things, I feel exhausted and need to stop and rest. Then I ask myself: “How much should I be pushing myself to function?”  My body suddenly has no parameters as far as what makes me tired. Instinctively I know that I mustn’t just sit and “veg”. That will destroy any remaining muscle mass, or strength I’m still holding onto.

Sleep Deprivation: for some years now, I’ve had a difficult time sleeping through the night. In fact, for most of my life, after having children, if something would wake me up, I wouldn’t be able to get back to sleep. Waking up at 2 or 3 in the morning, then not being able to go back to sleep for a couple of hours is devastating to mental health during awake times.  If I try to take naps, I end up not being able to fall asleep at night. Taking sleeping pills will still only work till around 4 am, then I’m awake. If I try to do something productive in that time slot, I focus and concentrate to the point where I’m up for the rest of the time, till I have to get up in the morning. I’m finding that the combinations of immunotherapy, with bronquitis (postnasal drip), pneumonia is making it much more difficult to: 1.) go to sleep; 2.) stay asleep.

That has been compounded by having to get up multiple times during the night to  go to the bathroom.

Intestinal intolerance: Since the onset of the bronquitis/pneumonia/ then immune therapy, I have a digestive window of about 1 half hr to an hour, when suddenly I have to go to the bathroom and everything comes out. It’s certainly not diarrhea, rather long rolls that seem to be the length and shape of my small intestine! It’s strange because, even though I might have eaten very little, that is not reflected in the volume of what is evacuated….so, where on earth is it coming from!

The same thing happens when I drink anything. Give or take up to an hour and I have a 30  second window to go pee. As long as I am very close to a bathroom, I have a chance to make it. It’s not a matter of drinking less, as I was told to drink 2 liters per day.

It’s gotten to the point where I resent people asking me: “How do you feel?”  ‘Feel’ is a totally subjective category and seems to change radically throughout the course of my day. I can “feel” good (almost normal), then suddenly, I don’t feel good again. It seems that I have lost the power to self-regulate how I feel, or that how I feel no longer depends on customary categories that I can relate to

Feeling good, then feeling bad – a constant process of change in how I feel, nothing moving toward consistency in feeling good or bad.

Balding: I was assured that immune therapy is not like chemotherapy as far as hair loss. I’m finding different.

After the first immunotherapy session, a lot more of my hair has disappeared, It will be interesting to see how long till I lose it all.

One of the most difficult things I’m confronting is the postnasal drip and the cough. That has been going on since the onset of the bronchitis. It finally seemed to be going away. However, two Saturdays ago, I suddenly had a coughing attack to release some congestion trapped in some respiratory tube somewhere. I almost choked, until I was finally able to cough it out. Then that night, I was up almost all night with a sore throat. I also went into atrial fibrillation, making me realize that the fibrillation is caused when my heat is put under extra stress from coughing attacks. Instead of gradually subsiding, the sore throat has continued getting worse, making it difficult for me to swallow, sneeze, or blow my nose.

Someone was talking to me about VALLEY FEVER, which is caused by a fungus living in areas of the southwest. The symptoms are similar to those of bronchitis, pneumonia, etc. The symptoms seems to last longer because they must be treated with a different medication and not just antibiotics. When I researched it, I discovered that Piedras Negras, Coahuila, is one of the principle areas of Valley Fever. Well, one more potential iron in the “what’s wrong with my health” fire. How much it’s related to this lingering sore throat, cough, and post nasal drip; I have no clue.

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Why this blog post?

Why a blog about melanoma and it’s treatment options and what to expect? Some immediately turn to the old adage: “Misery loves company”. While that may be true, I prefer reference to the life of Jesus: “Though He was God’s Divine Son, yet He matured through actual experience of submitted, obedient suffering> (combination of translations from Hebrews 5:8).

It’s one thing to have a mental realization of a health condition – to read up on it, to have the facts, to sort through the scary stories about what it all might lead to, and make a firm determination that = “….As long as I am trusting the Lord, everything will turn out alright, for His glory and my good”.

Frankly, I can’t get my mind around how people who don’t have the Lord to hang onto deal with it. For me, having a firm foundation of faith helps me to hang onto hope, hang onto the promises that I have at my fingertips in the Scriptures (especially the promises that my life and my total healing from everything will go on after this earthly existence). 

That being said, it’s much easier to be infused with hope, faith, courage, etc. when I’m feeling stable. It becomes much more challenging when I’m feeling strange, negative reactions in my body (many of which are new, and I can’t identify exactly where they’re coming from – is it the cancer; is it the immunotherapy; is there some new metastasis starting to develop in another part of my body; is it something else.) Those questions begin to gnaw at my subconscious and must constantly be pushed down. I have found that, as I pray, the Lord will give me relief, and I will be free of them. However, when they return, I must bite the bullet, say: “Okay, Lord, here it goes again” and go through the whole process of telling the Lord that I’m holding onto Him in faith and trusting Him through Romans 8:28, claiming verses, fighting to not let my mind go down the negative rabbit holes.

Each of us is unique biologically. We are not medical textbook diagrams of each other. Through a lifetime of different interactions with diseases, pollutants, medications, allergies, etc. we develop different types of immune resistance …or immune weakness. That is accompanied by what we are putting into our bodies on a regular basis (what foods, what stimulants, what drugs, vitamins, etc.); what type of exercise we do on a regular basis; how well we sleep; what stress levels we regularly operate under; our overall nervous condition (frequency and intensity of nervous reactions – for example I tend to get very hungry when nervous), our particular nervous condition at the moment (what triggers our nervous reactions and how we deal with that, etc. Finally, what particular experiences in life one has gone through, and what that can trigger when one faces a new but similar situation. 

I’ve cared for 4 friends with cancer- three of them made it safely to their new life on the other side, after much suffering. My nun friend, Hma Pamela is still going, despite constant, intense suffering for almost 20 yrs.. She’s been through more than 10 surgeries, untold numbers of chemotherapies, periods of addiction to morphine, periods of going “cold turkey” off of morphine, and the loss of her faithful canine friend and constant companion, Florencia.

I used to feel sorry for her and felt that I was helping her. Now in my own suffering and instability over my future, I admire her. She just keeps going – like the cork in the ocean, a huge wave will knock her for a loop, and she’ll go under, then bounce right back up again!

The cork in the ocean sounds inspiring, however, I’m discovering that it’s difficult to actually do, especially over the long haul. Plus, there’s a tendency for many people to give up and lose the motivation to continue supporting someone who keeps getting knocked under waves in the ocean. Sometimes, out of pure frustration, it becomes easier to put the blame on the cork for not doing more to help themselves.

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A Satisfying Feeling…

One of the satisfying feelings in life is the feeling that we can effect change, leave a mark–a legacy–on our way through this life, rather than only “existing”.

Recently a friend of mine, Jessica Roberts, lent me a book which is broadening my horizons as to the significance of what I’m doing and what others are accomplishing through helping me do it.

I’ve come to realize that I and those who are helping me are “social entrepreneurs”. We are involved in the grass-roots process of transforming society from the bottom up – the only way that enduring change can realistically occur. We are showing that problems can be solved.

We are singlehandedly recreating society’s capacity to address problems in a certain specific area.

On the part of each of you who is helping Project “Sanando Corazones”, this translates into an investment in the transformation of society. Continue reading

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Miracles on the Coast

Between Margaret and I, we had two packed weekends of psycho- therapeutic workshops with children in Talcahuano and along the coast of Tubul and  Llico (which were both totally destroyed in the tidal wave).

It’s amazing how the Lord uses these workshops. We are able to zero in on their emotional needs, show them the source of some of their pain and anxiety; and then give them Jesus in a much more personal way.   We prayed with 50 children to receive Jesus into their hearts.

Here’s one example of the kind of thing that happens in the workshops.  In one of the workshops there was a 14 yr. old boy who was very obnoxious and disruptive.

Margaret finally confronted him and said: “ I know you’re hurting inside and that’s why you’re trying to get all of this negative attention. But you don’t need to go down a negative road. It only brings you more hurt because of all the negative energy it generates from those around you”.

Then she went on to demonstrate to everyone  about different  tools for handling negative pent up hurt. Carlos settled down and listened attentively. Continue reading

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What Now?

I actually made it to Tirúa, which was the last community devastated by the tsunami of 2010 before the end of December.  It got the biggest waves of all….30 meter high waves!

January has found me practically living in the public library of Concepcion, working on organizing the results of the questionnaires and getting those results from each school sent off to the schools, the psychologists working with the schools, the school district administration, and some individual teachers (who had expressed interest in receiving the results). I finally got all of the results finished and sent off after a massive amount of work!

I visited and returned to receive the completed questionnaires in 32 schools and 12 refugee camps. There were actually two different sets of questions in each questionnaire, which needed to be tallied separately. The number of students processed in the questionnaires ranged between 150 students per school in the larger schools and 30 in the smaller schools (with two separate questionnaires per child, you must multiply 150 and 30 by two for each school and consider if you wouldn’t feel just a bit brain dead afterward like I do!). Continue reading

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Pirates in Perales

A lot of people, even in Chile, have never heard of Perales. Until about 20 years ago the road from Coelemu to the coast was so bad that you could only trudge through by ox cart (and I heard that it required some strong oxen to force their way through the  deep mud in winter and the deep dust in summer). Nevertheless, it wasn’t always that way. Perales, Vegas de Itata, and Meipo are communites along the Itata River as it meanders along and flows into  the Pacific at Perales. The Itata is a beautiful river, along with the countryside which surrounds it.

Up through the early 1800’s, Vegas de Itata  (up river  a bit from the mouth) was a booming port; in fact it was quite the city. Large buildings housed the municipal offices, stores, mail services, as well as plenty of entertainment facilities. There was never a dull moment (day or night) in this bustling city, as grains  were loaded onto ships and sent off to faraway ports. Continue reading

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You Never Know What You’ll Encounter Next!

In order to go from Curanipe to Cobquecura, one must make basically a geographical  square, going inland to a larger town (Cauquenes), then taking another bus south to the town of Quirihue; then another bus west back to the coast…all because there’s only a small windy road along the coast that is mostly driven on by ox carts. By the way , poor little Quirihue was totally destroyed in the earthquake, however the residents could only watch with desperation, as caravans of food aid , clothes, blankets, etc.  drove right through on their way to the coast. People in Quirihue went without food or shelter, but no one stopped.  One young woman I talked to said that she and her newborn baby stayed in the back of a pick-up truck for several days, without food or water, or any shade in the hot-end-of summer sun (as no tents got distributed there until later), while her husband went to help pull victims out of the rubble and find relatives who might be trapped.  The aid was going to the tsunami areas.  Continue reading

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La Loberia Bed and Breakfast

My new friend from “La Loberia Bed and Breakfast“, Silvia Stein,  is a dear! Since this is a holiday weekend, she invited me to stay on, even though I finished doing the workshop on “Gaining Strength Through Overcoming Obstacles” yesterday here in Cobquecura. I’m so grateful, as “living on the road” has taken a toll on my and I need a bit of rest and a little haven to be able to relax a bit. It’s actually quite a miracle. The inner patio of this place, besides fountains and a profusion of flowers, trees, etc., has a collection of copihues (Chile’s national flower).

This really is a lovely hotel! Plus, the beaches here stretch on for miles and miles in pristine beauty. Along with interesting rock formations off the coast and a whole colony of sea lions, the countryside here is like stepping back in time: farmers move along slowly in their oxen carts; one room school houses  kept busy with children helping each other learn; forests, fields, and sea all blending together in a beautiful mosaic. Continue reading

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It’s The Little Things!

Quick update: I feel so encouraged! I’m in Cobquecura, a city pretty much still on the ground, I was paying to stay at a kind of hotel…however, it was expensive for me. Then I happened to meet a lady who spoke English. She lived in the States for 35 yrs. in Conneticut and New York. Her husband used to be in the Peace Corps. He’s American. I found out that there are several Americans around the area, who run exclusive type resorts on the coast.
I mentioned to her about my project and gave her the website. I guess she googled it and invited me to stay at her exclusive Bed and Breakfast on the outskirts of the town. It is an old colonial mansion that she redid after the earthquake. I stayed in the Gabriela Mistral Room, which has a huge painting of Mistral. This woman is also a quite successful artist.

Gabriela Mistral
(1889-1957)

Born as Lucila Godoy y Alcayaga in 1889, Gabriela Mistral was the first Latin American to win the Nobel Prize in Literature in 1945.  Although Mistral is best known as a poet, she was a prominent educator, diplomat and feminist.  She served as Chilean consul in Naples, Madrid and Lisbon, and was involved in cultural committees attached to the League of Nations.  She held numerous honorary degrees and taught Spanish literature in the United States at Columbia University, Middlebury College, Vassar College and at the University of Puerto Rico.  Sonetos de la muerte, a collection of love poems in memory of the dead was published in 1914 helped make her name a standard within the literary community.  Her complete poetry was published in 1958.  She died in 1957.

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