Children -- Why do We Have Them?

There are probably as many answers to this question as there are children.

A lot of people have children as accidents of nature; maybe they never wanted any in the first place. Yup it happens. But more likely than not, once that child arrives, he/she is welcomed and loved and nurtured and celebrated. Amazing, isn't it? What we thought we didn't really want or need becomes the fulfillment of a dream.

Some may plan -- for years and years, sometimes -- to have a child. They crave the joy of holding that infant, changing that diaper, playing with that toddler in the backyard. The children come and that joy is fulfilled.

I am a mother. I have two children. I was among the "planners." I wanted the family, I welcomed it, I dove into the role headfirst. It was wonderful. I am lucky to have seen my children grow into successful adults, contributors to society and making a difference in the world.

I also have two terrific grandsons, the miraculous result of having a child who, in turn, wanted children. What a bonus!

Now.... here is the best reason of all to have children: They will reflect back to you what you have been to them --  they love you as much as you have loved them all of those years of growing up. Many jokingly refer to this as "payback."

Today I am calling this THE GREAT REWARD.

My children, Erin and Nick, are rallying around me as I go through my pain. They have descended upon me this weekend like teenage groupies on a boy band! Vacuuming, shaking out rugs, changing sheets on beds, sorting mounds and mounds of papers, sorting supplements and meds, food supplies, and clothing. My daughter is the queen of organization. My son has already done a yeoman's job, learning how to flush my PICC line with saline and Heparin, accompanying me to doc visits and medical procedures, applying "bio-freeze" to my aching back, figuring out how to download forms for handicapped parking tags. At the moment, he is scrubbing the bathroom floor as Erin continues to organize the kitchen and prepare food. When I "had" my children, I really had no idea what angels of mercy they would become.

Children -- why do we have them? They give us something to care for; and they care for us. They learn from us; and we from them. What better reason?

Never Say Never

When first traveling this road, I used to say "I will never take chemotherapy." Then two years ago, I went on IV chemo. Never Say Never? Once off of that (just last February), I decided to give the vitamin C a try. I wanted to say Never Chemo, Ever Again. But I didn't actually say it. I just thought it, hoping that my condition would improve.

Well, if the vitamin C infusions have helped, I will never know it. I have gone off of the C therapy earlier than I had planned and am back on chemo.

How did this happen?

I hurt my back. Or.... maybe I didn't actually hurt it myself; maybe the little "twinges" I was feeling in my lower back and hip were the cancer lesions in the bone and spine just waiting to grab me? In any case, they have REALLY grabbed me. I started feeling intense lower back pain the Monday of Holy Week (late March, when I had a lot of piano gigs!!). I went to see a chiropractor right away. She could only do minimal treatments for the back b/c of the cancer that is in my spine and ribs; she was fearful of breaking my bones. So I experienced some relief, but .... well, not really. Then my mid-back started to hurt -- BIG TIME; thought I might have pulled the muscles myself. But it is now almost a month, and the back pain is still so intense that I had to seek out pain med help from my oncologist.

PAIN can change so many things: hopefulness turns to hopelessness, joy turns to anguish. And the whole time you know it's just the pain, but you can't help it. You feel like it's the end, not the beginning. You can no longer "talk yourself out of" any funk you are in. The entire month of April was like that for me. I had a birthday; didn't care. Was finally doing Vitamin C therapy; didn't care. Spring was coming; didn't care.

So when (son) Nick and I met with the oncologist on Thursday seeking pain med assistance, she pretty much asserted that the pain was probably cancer-related, bone-related, spine/rib-related, maybe liver related. I had to face the music; face the reality; with pain leading the way -- time to go back on chemo. Never Say Never. The doc had suggested some different chemo therapies; I just picked one and said "let's go with it."

The heavy-duty pain meds the doc prescribed did nothing for the pain; and they made me nauseous. So I am back to square one with the big P. Nick is trying to find me a place to procure medical marijuana. If anyone can help us with that for the state of Maryland, please let us know.

Back to weekly chemo next week -- same as last time, three weeks on, one week off. One positive thing: they can use the PICC line I had surgically installed for  my vitamin C infusions. No arm-pricking! Nice to find a silver lining.

I will seek out more silver linings; I promise. Meanwhile, I think I feel that I am on a downhill trajectory. It is inevitable. Not to be avoided. More on those little philosophies later. Keep praying this prayer: TAKE THE PAIN AWAY!!!

On the Road Again

Originally (and I know some of you have followed this litany from the first post in 2013) I began this journey taking the "off-road" track: starting with mistletoe, going to a clinic in Tijuana, rejecting chemo. Hence, my naming this blog the Road Less Traveled. Since then, I have taken many detours and most recently have subjected my body to several big pharma chemo drugs in my war on cancer.

On this most recent off-road track (the chemo track), my cancer has progressed.... sometimes slowly..... but definitely on the downward trend. After coming off of the most recent IV chemo drug (Taxol, the standard for breast cancer), a PET scan was administered. The results were not good: the liver lesions have increased in size and number. This helped my decision to get off of the Taxol -- not only to give my bowels (and my body in general) a break, but because it obviously was NOT keeping the cancer under control.

What to do? Well, ever since my return from the clinic in Tijuana in September of '13, I have wanted to re-try vitamin C IV therapy. Why? Because in December of '13 (I think I documented this more thoroughly in an early blog -- see archives), I saw a Bio-feedback practitioner who helped determine that the therapy that did the most benefit for me in Tijuana was (to my surprise, quite honestly) the IV vitamin C. Even though I attended the clinic in Tijuana for only 3 weeks, an amazing amount of progress was made on my very sore, swollen, and visibly inflamed breast; soreness was gone, swelling and inflammation were greatly reduced after only a week-and-a-half.

Why did I never try IV vitamin C after I learned this news of its success? Because evidently taking vitamin C can keep chemo from "doing its job." It is contra-indicated as a viable treatment when on chemo (per oncologist).

So now that I am off of the chemo, I am on IV vitamin C therapy. It was difficult finding any places that offer such treatment; I ended up going to NIHA (National Integrated Health Associates), a place I have always avoided.... had heard some good/some not so good about the place. I just grabbed the first place I could find b/c I wanted to get going on this ASAP. So after an arduous process of getting the whole thing in place, I am now on IV vitamin C therapy (alternating with hydrogen peroxide) three times a week. The schedule is grueling, the cost is astronomical (all out of pocket -- no more Medicare coverage).

I have 3 IV sessions per week, each one about 2-3 hours in length (almost twice as long as the IV chemo was). In order to save $$ on parking ($9 per visit!!!), I have been taking the Ride-On bus from Silver Spring to Friendship Heights (location of NIHA). Found out you can get an old-fart SmartTrip bus pass; bus trip costs only $1 during rush hour and it's FREE non-rush! (cool, huh? getting old CAN be awesome!)

Started all of this vitamin C-stuff on March 14. Plan is to go 12-16 weeks, then schedule another PET scan and monitor progress. We shall see what we shall see. Meanwhile -- pray, hope, and live each day to the max. Liver lesions or no, I am enjoying spring and music-making.

Plan C -- Opting to Take a Break from IV Chemo

In my previous posts, I outlined Plan A (Ketogenic Diet) and Plan B (dropping the oral study drug, thinking that it was causing my bowel problems).

I have now been on the Ketogenic Diet and off of the study drug for 3 months. I am amazed at the change in my overall health due to the diet: I have lost 17 pounds, sleep is amazing, acid reflux is GONE, and energy is high. The idea is to go into ketosis, a state where the healthy cells in my body can utilize ketones and fats for fuel; but cancer cells cannot survive, as they need glucose to replicate and remain active. I have no idea whether the diet is working for that; time will tell.

I went off of the oral study drug because I was experiencing very severe bowel issues (the Big D, if you get my drift). At first, I thought that all was well in that department; however, the bowel issues still exist. This means that it is probably the IV chemotherapy (Taxol) that is contributing to this problem. This being the case, I discussed with my oncologist the possibility of taking a break from chemo altogether for a period of perhaps 3-4 months to see if my bowel problems might clear up. She agreed to this plan (which I am calling Plan C). So after this round of chemo (the 23rd month of this!!!! that's almost two years!!), I will stop treatment for a while to give my body a rest from the onslaught of poison that comes with chemotherapy.

The "psychology" of all of this intrigues me. For several weeks, I have been asking my oncologist the question: "So..... exactly how long will I be on this IV chemo treatment?" Her reply was always something like: "Well, you have been pretty stable on this; there have been no new occurrences of the disease"..... or "Well, this seems to be working for you." Not once has she even come close to suggesting that I could try going off of the treatment "just to see how my body does." In the world of oncology, they just keep you on whatever you're on; forever, if that's what it takes. If she even suggested that I could opt to stop the treatment, she might be subjecting herself to medical liability issues should I take that suggestion and then run the risk of my cancer getting worse.

So the decision was mine. Period. She gave me no guidance; she made no judgment whatsoever. I guess I should be grateful for this. I am flying solo. Who knows where I will land? Stay tuned....

Sweet Slumber

For years I have experienced problems with sleep: trouble getting to sleep, trouble staying asleep, sometimes lying abed half the night staring at the ceiling trying to calm the racing mind.

I have tried many remedies. The latest formula was Valerian (herbal supplement) and Coffea Cruda (homeopathic tablets); these helped often, but not every time I experienced insomnia.

Then I started the ketogenic diet. I think I threw my body into shock when doing this because  I spent several nights in a row staring at the ceiling with that awake "monkey mind."

What to do?

One of my favorite on-line (AND in person) mentors is a wonderful chiropractor, Dr. Eric Berg. I went to see him (in northern Virginia) several years ago for some acupressure work and found him to be an amazing practitioner. He now has a huge on-line following. He has learned the art of reaching millions of people via the internet. Just look for him on YouTube and you will find incredible video blogs of all kinds. He also does a weekly on-line live call-in show via Facebook.

Dr. Berg is an expert on the ketogenic diet, not only for weight loss but for cancer. He and his wife offer a lot of incredible recipes for the keto diet. When I was having sleep issues, I found this amazing YouTube video outlining Dr. Berg's formula for dealing with insomnia:  https://www.youtube.com/watch?v=cqbQAWpOJVE

If you view this, you will see that he talks about several possible reasons why insomnia takes hold of you on the ketogenic diet. I was particularly struck by what he said about intermittent fasting, lack of potassium and lack of vitamin B1. (In other videos, he discusses these three problems as separate issues.) So I began dealing with all three of these.

1) Intermittent fasting. I try to restrict my eating to 4-6 hours in a 24-hour period. At first it was difficult; but after a few days, I became accustomed to it.

2) Potassium deficiency. I remedied this by taking a shot of wheat grass daily. It tastes nasty but according to Dr. B, it's a great way to boost potassium intake. He has developed a powder that is not the complete wheat grass in dried form but the wheat grass JUICE in dried form; it's much more concentrated and more effective.

3) Vitamin B1 deficiency. This is alleviated by taking a spoonful of nutritional yeast a couple of times a day. Found this at My Organic Market. It's not very expensive and is easy to take; can consume it "straight" (has a lovely nutty taste) or sprinkle it on food.

4) Adrenal supplements. Dr. Berg has developed a couple of adrenal support supplements that I take to help "awaken" the adrenal response in the morning and "relax" the adrenals at bed-time. Just look up this topic on Dr. Berg's YouTube site if you need more info. It's all there.

After beginning the above protocol, I began experiencing AMAZING sleep. No kidding; I didn't know it was possible to sleep through the night! I consider this new-found information nothing short of miraculous. Dr. Eric Berg is terrific. Check him out: https://www.drberg.com/blog

Au Revoir, Reflux!!!

My, my, this ketogenic diet has exhibited some surprising and delightful side effects.

In past posts, I complained of having acid reflux and heart burn -- a very common problem to many. In fact, I was blaming my chronic cough on this condition (LPR, or laryngopharyngeal reflux); I went off coffee and wine and worked on eating a low acid diet. I will admit that the change in diet "seemed" to help the cough initially. But it (the cough) has, sadly, returned with a vengeance; so I have been questioning my blaming it on acid reflux. And my hunch was right.

Since starting the keto diet, I have experienced NO (that's zilch, zero, nada, zip) acid reflux; no more problems with heart burn when trying to sleep. No more getting up at midnight and taking a Pepcid tablet. No more trying to sleep propped up on pillows.

I have even gone back to having one cup of coffee -- just one -- in the morning. This has not seemed to affect my cough at all, one way or another, nor my reflux problems. I have learned that this one cup of coffee actually has a positive effect on the intermittent fasting component of the keto diet; this is something I will discuss in a future post.

I am dumbfounded by this.

We truly "are what we eat." And more importantly, what we DON'T eat.

So this keto diet that I have embarked upon for fighting off hungry cancer cells has shown itself to have very demonstrably good side effects in other ways. Is it starving those *&+!!^($#@!!#$^ cancer cells? Hope so. Time will tell.

Plan B -- Bye-Bye, Study Drug!

If you are following the chronology via the archives, you know that I have a plan.

Plan B in my cancer treatment is STOPPING the oral chemo study drug (Alisertib) that I have been taking for 20 months. I tried to just leave the study altogether, but the study coordinator asked if I could stay on as part of the study, while no longer taking the drug. I agreed to this. Because I was stopping their drug, they insisted that I undergo CT and Bone scans within 7 days. So I had a CT scan this morning. Bone will be in a few days.

Why have I gone off the study drug? The primary reason is that beginning last February, my bowels began mal-functioning. I had the "loosey-goosies" or the big D (you know what I'm talking about, right?) beginning at that time and continuing to the present. Both the study people and my oncologist felt that this was probably due to the study drug, which is orally administered, and not the IV chemo.

And, in essence, I got tired of being a lab-rat. I ran into horrific billing issues with the scans that were administered early on in the study; in fact, those issues are still not resolved. I won't even go into that mess; it's too agonizing.

So I did agree to stay on the study (but not the drug) because they said that it would help them determine if, indeed, the bowel issues were due to their drug instead of the IV chemo. Part of any study for a new drug is determining what side effects are to be expected. You know those, right? That list of horrendous things that can happen to you that they list in those pharma ads on TV?

I will remain on the IV chemo for a while to see if the bowel problems will right themselves. Problem is, this new keto diet is pretty rough on the intestinal tract; it requires eating a LOT of raw veggies and greens and this, of course, tends to exacerbate poop problems. I am hoping that, as my body becomes more accustomed to the new diet, these issues will go away.

So, those who have been following for a while know that this sudden flurry of postings is rare, yes? That's because I have decided to stop being a passive guinea pig and start being pro-active! So the news bulletins will come with more frequency. If you want to receive email alerts when I add a new post, you can do so at the actual blog website, at the VERY bottom; there is a place there to sign up for email alerts. The site is http://betsyrlt.blogspot.com