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!