Time for Chemo

I sailed through my three-month lymphoma follow-up -- blood work looking good and the rest of me doing okay.  That was the end of October. 

Unfortunately, there were a couple rips in my sails.  The main one was having gotten several flu viruses since the beginning of September and one in October.  Then the night of my follow-up visit, I suddenly got really sick with what seemed like pneumonia. Then my sails started flapping in the wind!

So Much Gratitude

Simple questions are often the hardest to answer.  Like "who are you"?  If I get asked that question (even by myself), it feels like I"m wandering around inside a cornfield maze -- glimpsing an opening here and there, but ultimately still lost in the seemingly endless possibilities that could be taken.   

But when I get asked, "What are you grateful for?"  -- the answers come crystal clear.  Especially since being diagnosed with cancer (just 3 months now).  I"m not sure how that works because it seems like the opposite should've happened.  I should be acutely aware of bad things happening and wondering "why me?"

Lately I've been reading a well-known inspirational blog by a woman who has breast cancer called The Silver Lining.  Finding the gift, or the silver lining, in all things (especially the seemingly bad things) -- it's all part of the new healing lifestyle.  An *attitude of gratitude* is recommended by most healers these days.  And many of them are M.D.'s. 

How is it that even M.D.'s are on board with this?  Because shifting to the energy of gratitude suddenly lightens the load, and the energy in the body changes.  I can feel a palpable difference when I do it.  Thoughts of  "OMG, I have Stage IV cancer" can nearly suck me under but when I suddenly switch to focusing my thoughts to something I"m thankful for, then I suddenly climb out of a muddy pit and start glimpsing some glittering tree tops. 

It's really quite amazing how that works.  And even if it doesn't work, it just feels good. 


Fresh beautiful flowers after surgery

Since getting the diagnosis in July, many amazing things have happened in my life -- namely in the form of dear friends and family, but also from people I didn't know well or didn't know at all.  I'd like to take this opportunity to say thank you from every crack and crevice in my heart for all the wonderful, touching moments I've experienced -- through gifts of concern, caring, and love.  They've meant everything to me.

Things like finding fresh beautiful flowers on my doorstep on arriving home from surgery, and lots of good food and visits during my recovery in July.  Regular phone calls have also been so meaningful to me, because I haven't always been able to call.  The first weeks after getting diagnosed is usually a very crazy amd overwhelming time.  Many of my friends just kept calling, even when I couldn't return the call, and I appreciated that so much.  

Friends brought ten-pound bags of organic carrots and boxes of organic spinach, and lots of other fresh produce for my new "veggie extravaganza" diet.  I received many beautiful and well-meaning cards and well wishes.



Great water filters (Aquasana) for kitchen and shower

Water filters for my kitchen sink and shower (no more chlorine!) were sent, and a new BPA-free water jug. 

Did I mention all the kindness, compassion, and support via emails and phone calls for dealing with the diagnosis?  That's been so needed and so appreciated. 

My laundry was done, I got rides to CT scans, shots for bloodthinners, and seeing my new oncologist.

Getting ducks in a row isn't easy!

When first diagnosed with cancer, you're not sure where to turn or what to do (or do first), so a lot of energy was spent trying to get my ducks in a row.

For me, getting some kind of logical and impactful treatment going was first on the agenda. Even if doctors wanted to "watch and wait", that's not really my style -- I had to do something! This took, and still takes, a ton of reading and research into what all the best options are for follicular lymphoma.  Friends have helped me tremendously with some of this research and I'm so grateful for that. 

I'm also extrememly grateful for all those who've come before me -- other cancer survivors who have taken the time to document their journey and share it with others.  And share it with me.  Without them, I wouldn't have access to much-needed information for this condition.

And here's one of the most amazing things that's happened to me since July.  A huge emotional gift given by so many, on so many different levels.  Two of  my good friends held a fundraiser for me to help pay for medical expenses -- a bake sale, arts and crafts sale, and yard sale. 

A festive fundraiser with
bake sale under the canopy

They planned the entire thing, got donations of the most amazing kinds (even artwork) with baked goods, and created a very festive yard sale.  When I drove up to the event at 9 am last Saturday morning, I was overcome with emotion.   How could I ask for better friends than this?

What touched me the most was that friends came from all walks of my life -- art groups, book club, singing groups, longtime friends that I hadn't seen in way too long, an amazing nurse from my favorite doctor's office, relatives, church, other cancer survivors, other artists, and neighbors, just to mention a few.  Even the maintenance man from my apartment complex, a young musician, brought his girlfriend.   All of them friends to me.

 

One of my paintings bought
at the fundraiser by a dear friend

It was beautiful and astounding to see all the connections I have made over the years, and so moved that people would take the time just to come out and say hello.  Even more astounding is that I have many more friends who couldn't come, or didn't know about the event.  I value their support and friendship also in every way. 

Another painting bought
by a great friend

So many touching things happened that day.  Like the man who came by, a stranger to me, who said that he also had lymphoma, and to tell me, "It'll get better".  Thank you, whomever you are.

In the end, whether medical bills get paid or not became so inconsequential.  The very full feeling in my heart from that day will stay with me the rest of my life, I"m sure of it.   I felt like George Bailey in the last scene of "It's a Wonderful Life":

No man is poor who has friends. 



Vitamin C, Sugar, and Cancer

Having a degree in nutrition science, I thought I knew a little about Vitamin C.  After all, we learned about Linus Pauling (who discovered Vitamin C) many years ago, and his efforts to cure cancer.  Which sadly have not been researched properly over the years -- a long story that I won't go into here. 

It's the sugar that enters this picture as the real culprit. 

On a Charlie Rose (PBS) show several years ago, I listened to researchers from heavy-weight institutions proclaim that studies had just proved that sugar causes cancer.  And it didn't take years worth of sugar intake to do it -- only a few weeks!  That was startling news, and I wondered how long it'd take our culture to catch on to what a poison sugar really is. 

Now enter my cancer diagnosis, and efforts to try some natural treatments like Vitamin C.  It turns out that Vitamin C (i.e., ascorbic acid) resembles a GLUCOSE molecule!  Glucose as in the most basic sugar in our blood, that all other sugars and starches are broken down into. 

It also turns out that cancer cells take up glucose.  Said another way, cancer cells eat and live on sugar.  WOW. 

Now, this sounded a little surprising to me too at first, but it's fairly common knowledge in the cancer/Vitamin C world.  At least it should be.  My neurologist Dr. Hassid is up on all this.  Here's how it works.  Because ascorbic acid resembles a glucose molecule, the cancer cells (without other available sugar) will take up the ascorbic acid, which then proceeds to kill the cancer cell. 

Simply amazing, isn't it?  This also means one can't eat any sugar around the time of the IV because then the cancer cells will preferentially eat the real sugar instead.  The ascorbic acid is only a suitable alternative without real sugar. 

So the ascorbic acid is given intravenously (IV) in 30 to 75 grams doses (or more), and increases blood levels of ascorbic acid dramatically -- but only for a few hours.  Interestingly, at Dr. Hassids, they also test your blood sugar before and after the IV.  What happens is your blood sugar actually tests HIGH after the IV, but it's only an illusion.  It's only high ascorbic acid, not high glucose.  But even the glucose meter can't tell the difference. 

So blood levels stay high for up to 4 hours, and this is why 2-3 IV's are recommended weekly for cancer treatment. 

Well, that all sounds good but in my mind I got to thinking....if my blood levels are only high for up to 4 hours, then I"m only getting cancer cells killed for 4 hours.  What about the rest of the time?  So I started looking for another way to get, perhaps, round-the-clock cancer killing from ascorbic acid.  I'm not the only one wondering this, it turns out. 

That's where liposomal (fat-soluble) ascorbic acid comes in - taken orally.  If it's fat soluble, and not just water soluble like regular ascorbic acid, then it can actually get inside the fatty membranes surrounding every cell.  This is done by combining the ascorbic acid with phospholipids such as lecithin. 

And now there's not just liposomal, there's "liposheric" ascorbic acid.  Where the fatty molecules are made into even much smaller "nanospheres" so they can REALLY get inside the cells and go to work.  This then keeps levels of ascorbic acid fairly high - almost as high as with IV's, if it's taken at regular intervals during the day. 

I found a way online to make my own lipospheric ascorbic acid using lecithin granules.  It's done with sonic energy that merges the molecules, in a smallish jewelry cleaner machine!  I've never cleaned jewelry in my life with such a machine; maybe that's why my end product seemed like a failure.  Tastes nasty too with the lecithin.  So I just ordered a good brand of liposheric C to see if mine resembled theirs at all.  The oral amount will be 6 grams to 12 grams per day, which could cost up to $1.00 per gram, without making it at home. 

And so goes the weekly trials of using alternative medicine, and attempting some cost effectiveness.  I even had chemistry for 3 years in college, oh well.  It's a process, for sure.

Other things can be made into liposheric molecules too, like glutathione (body's master detoxer), resveretrol (master anti-oxidant), COQ10 (strong anti-inflammatory), and curcumin (from turmeric) -- all very potent cancer supplements.  Sounds like more home chemistry is coming up soon at my house! 

Not According to Plan

I've resisted up until now documenting these new happenings in my life-- even the part of me that's a writer, and needs to write. Maybe seeing the story in writing would make it seem more real -- something I"ve been tactically avoiding in several different not-so-obvious ways.

But then, it's all happened so fast. Just since July 3rd, I've had general surgery to remove a neck lymph node for biopsy, an aneurysm then a massive blood clot of my jugular (neck) vein, been put on anti-coagulants (blood thinners), had a CT scan and bone marrow biopsy, and of course, received the news of first "lymphoma" then "Stage IV lymphoma". All of it unwelcome and shocking news!

The original plan was to "watch and wait" (the official medical term) and get re-evaluated with another CT scan and bloodwork in October. That gave me 3 months to work on my own healing strategies which I launched into right away. And, if nothing else, process the whole mess that really began June 18th with an attempted lymph node biopsy and anxieties of "Gee, could I really have cancer no that would be impossible..."

But I'm floundering this past week with unexpected chest pain where the largest lymph nodes are (next to my heart and lungs). So, not only am I finding I need more coping strategies as things are not going exactly to plan (if there ever could be a plan on this kind of path). I"m also having trouble keeping up with updating all of you, my friends and family which feels so important now. I hope you won't mind reading some of what I may have already told you on the phone or in person.

So suddenly on August 20th (I notice that's today), I had to rush over for another CT scan of my chest to see if the large lymph nodes there had grown too much, causing pain, and which might require some intervention, namely chemo. Yesterday I saw Dr. K my oncologist (I notice online they're often called "onc" for short) to learn more about his thoughts on treatment for my particular situation. His plan for chemo would be two drugs -- one doesn't seem so bad and in fact, seems pretty smart. It's an immunotherapy drug that targets the B-cells (lymphocytes) directly -- the good ones and cancerous ones. But hey, that's better than kiling a bunch of other good cells.

However, his description of the second drug caused me to use a few wads of the tissue they kindly keep on hand for sobbing patients. At that point, it kinda hit me. That it is really ME that has cancer and it will really be ME that might need chemo.

And now here it is in writing, so it must be true. Thank you for participating in my now much-needed coping strategy of writing. But more than that, I appreciate your support by just knowing about and acknowledging the path I'm now on, and have been on for 4-5 years because that's apparently how long I've had this slow-growing lymphoma. I'm already a cancer survivor! I guess that's the good news. I'll have to mull that one.

 

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The Good Thing About Cancer

A good friend just loaned me the book by Bernie Siegal M.D. -- How to Live Between Office Visits, A Guide to Life, Love, and Health. Wish I would've had this book in my pre-cancer days, it's fabulous! Bernie even got me to tear up a list I was making yesterday -- not an easy feat for me -- and just experience the day. It felt so much better and so much less frantic.

This is a poem he received from a woman named Patsy Barrineau, who left this wise and beautiful message.

The Good Thing About Cancer

The good thing about cancer

is that it speaks

in short sentences.

I listen attentively

as malignancy whispers:

Applaud yourself.

Hold his hand longer.

Hug her.

Buy it.

Say it.

Touch.

Kiss.

Smile.

Scream.

Laugh.

Cry.

Enjoy.

Live.

Yes.

I especially like the last "sentence"...

 

 

Follicular Lymphoma in a Nutshell

Before being diagnosed with lymphoma (on July 8, 2013 -- one of those unforgettable days), I thought I knew a little about cancer. I’ve had some dear friends get cancer, as I’m sure we all have. Plus, I've been involved in the health and healing world over the years in one way or another, so I've known professionally of many aspects of cancer.

It turns out, I didn't know much.

There’s so much to know! Even for lymphoma, there’s a dizzying array of categories and types. What I have is called “follicular lymphoma”-- the shorter name for:

Non-Hodgkins B-cell follicular lymphoma

What the heck is follicular lymphoma? Basically, it’s a cancer of the immune system, specifically, the B cells. These B cells (along with the T cells) are some of the soldiers (the lymphocytes) of the immune system if the whole thing was likened to an army. They help find and destroy invading organisms like viruses and bacteria.

The cancerous B cells then collect in different parts of the immune system, like the spleen, thymus gland, bone marrow, and the lymph nodes (located all over the body). My spleen and thymus gland are okay, but I have groups of enlarged lymph nodes in 6 different areas: neck, chest, one armpit, upper and lower abdomen, and groin. The largest lymph nodes are in my chest, between my lungs, next to my heart. They were almost large enough to cause my oncologist to recommend immediate chemo – but not quite. And it’s in my bone marrow, making it Stage IV, which just describes how much it’s spread.

Follicular means it’s slow growing, and it’s the most common type of the slow-growing lymphomas. It’s also considered incurable, unlike more aggressive forms that are considered curable. Doesn’t make sense, but there it is. When I first heard that it was slow growing, that sounded pretty good, or at least, not quite so bad. Until I learned it's been growing so long (4-5 years possibly) that it's spread significantly.

Something else I didn't know at first -- lymphoma is considered a blood cancer (along the lines of leukemia). And it’s most often diagnosed in the later stages (III or IV) because there aren’t any symptoms to speak of – not until an enlarged lymph node shows up and one is lucky enough to get it diagnosed before getting to the point of having night sweats, fatigue, or fevers. At that point, then it’s usually the most advanced (like Stage IVB). I’m at Stage IVA, because I don’t have those symptoms.

So, how long have I got? This is the question that strikes terror at mention of the “c”word. And I’d like to take a moment here to thank all my friends and family who haven’t yet specifically asked me this question (smile). I’m getting better at discussing statistics and all that, but…it’s not that easy at first to talk about your own mortality.

The prognosis is generally pretty good and the median survival is about 8-15 years but can range from 1 year to 20 years. It just depends on a lot of individual factors. My oncologist gave me my own statistics, based on everything like my age, bloodwork, size of lymph nodes, etc. I’m sure I”ll talk about it one of these days…

So What Now? My oncologist feels that treatment (chemo) will be needed, it’s just a matter of when. I asked him what would happen if nothing was done for another year and he said that my bone marrow would be totally infiltrated. Radiation is sometimes used, but in my case, my biggest lymph nodes are right next to two of my best buddies – my heart and lungs! So that’s too risky in that area.

Since I feel pretty good and don’t have any real bad symptoms, the “watch and wait” approach is the first strategy. This sounds odd at first (it did to me) because you’d think that taking immediate action against cancer (especially if it’s advanced) would be the best medicine. But in the case of slow-growing lymphomas like I have, it’s actually better to wait until things get worse somehow – like fever, night sweats, fatigue, or pain; or things get too “bulky” (very enlarged lymph nodes) that start causing trouble (i.e., pain), or major organs are threatened. Since I’ve been having chest pain for some weeks now, that might be what triggers the need for chemo, I’m not sure yet. I’ll see my oncologist again this week to talk about it.

Apparently, studies have consistently shown that survival is the same whether treatment is started immediately or deferred until needed. And I’m fine with that. Because if I would’ve been told 4 weeks ago that I needed chemo right away, I probably would’ve flipped! At least I have a chance to research my options and get used to the idea.

In the meantime, I’m not waiting. I have my oncologist’s blessing to try anything I can to help myself. My ultimate and perhaps lofty goal is to never have chemo. So I’ve already started some of my own treatments to aim for that goal (if nothing else, these things should keep me feeling strong):

·   A specific diet for blood cancers (80% plant foods like vegetables, nuts, seeds, low-sugar fruits, beans; and 20% high-quality fatty meats -- believe it or not, like grass-fed beef and lamb), organic eggs, and whey protein.

·   Lots of supplements for inflammation etc.

·   Detoxing with infrared saunas and coffee enemas (among other things)

·   Vitamin C therapy (I had my first IV infusion yesterday; more on that wonder drug soon!)

·   Exercise of all kinds to keep lymph moving

·   Daily vegetable juicing

And massive quantities of vegetables in every way imaginable! This is all quite a bit of daily work, more than I ever could’ve dreamed, but seems to be paying off already. I've already reversed the anemia (low iron) so that's encouraging. And I started feeling even better after starting all these things, especially the diet.

If you’re wondering about the fatty meats, that surprised me too. Until the past few weeks, I haven’t eaten beef much for 10 years unless it was given to me at Christmas! But it makes sense. Beef offers the most absorbable form of iron, and blood cancers usually bring anemia (low iron). Thankfully, I’m already gluten-free for 3 years, because if I were starting that right now along with everything else, it’d be a lot. Alas, I’ve had to cut out dairy – something I never thought I could do. And I’m surprised how little I miss it, but will need to find another way to make coconut pudding - one of my comfort foods. Does anyone have any ideas?

I initially started on a pancreatic enzyme program that kills cancer cells (the Kelley Metabolic Program) but I recently discovered that high doses of Vitamin C really help the chest pain. So for now, Vitamin C is what I’m focusing on.

Will all my efforts be enough to stop the cancer from growing?

I have no idea. But figure it’s worth a try. I’m not the kind of person to sit around waiting for something to happen. I’d rather feel like I’m doing something to help myself, even if it involves shoving vegetables into my Jack LaLane juicer day after day.

I'm sure I'll learn a ton more as time goes on about the immune system, cancer in the immune system, and all things related. But for now, thanks for following my stumblings as I try to find my way through the maze of cancer. I appreciate your presence very much!