One Year to Recover

A year to recover from chemo is a lot longer than I was planning on.  That's what my oncologist said last month in my follow-up visit.  The fatigue component would be at least 6 months.  And since it's been two months since finishing my six-round treatment, that gives me a ways to go. 

Not to mention that some of the side effects, any of them, could linger.   The fatigue and intermittent body aching are still the worst residuals for me.

On the plus side, my doctor also went down a long list of possible side effects that I could still be having - and I didn't have any of them!  I also feel a ton better than just a few months ago.  Some ups and downs, yes.  Mostly because my red blood cells plummeted last month and I became more anemic than even during chemo!  And much more tired.  Like a windup doll who just wound down. 

This was quite a surprise to me!  But when I looked at what I'd been eating the month before, it wasn't as much of a surprise.  I had dropped off my most iron-rich foods like grass-fed beef and spinach.  Once I got back on those in a big way, I started feeling gradually better in a matter of days. 

A recent haul from my
garden, as the summer
winds down

That was a good lesson.  To see that just because I did so well during chemo, there were reasons for that.  Hey, I'm not naturally that solid or physically unflappable.  All the foods as medicine and supplements really played a part.  Even so, it's still a little shocking even for me, a nutrition scientist, to see the direct correlation between diet, outcome, and function.

I wanted to say a few words about my amazing oncologist, Dr. Kiwan at Sutter Cancer Center in Sacramento.  At my follow-up visit last month, after getting through all the medical-type questions, he then asked me: 

So, what do you plan to do with your life now? 

I was so touched by his question, not just because he was a doctor actually asking me about my life, but because I could tell he "knew" what the cancer ordeal is all about.  One, if there's hope you're going to live for awhile, the big question then becomes, "What shall I do with myself, and the rest of this life?"  What do I WANT to do with my life"? 



I need a little time
on the beach to
figure things out.

These are questions that we all could be, and even should be, asking ourselves on a regular basis.  But do we?  I don't think so.  We're too caught up in the daily routine of life -- making a living, taking care of kids, dealing with all the little crises that come up, and on and on. 

I told him that I felt some big changes were needed in my life.  That cancer surely must be a transformative illness and needs to be treated that way.  He said, "Good!"  All my patients who do the best make a lot of changes." 

And that's pretty much what all my reading and research tell me about cancer survivors.  The folks who recover the most fully let themselves be guided to whatever needs changing in their lives.  So, that's my mission now from this point forward.  I'm not sure what all is in store just yet, but I have a few blossoming ideas that I'll share later.  Dietary, exercise, and health-habit changes are only the beginning.  The emotional, spiritual, and social components need to be covered as well.  Whew. 

It's still a bit overwhelming at times, to be honest.  I hope I can be one of those who does whatever it takes, without becoming complacent when faced with making some even bigger changes in my life. 

In the meantime, onward!  At this point, every 3 months I go in for a check-up, and every 6 months a CT scan.  Based on how I was at diagnosis, and the fact I'm now in full remission from the slow-growing follicular lymphoma, gives me a 92% chance of staying in remission for 5 years.  Now that's pretty darn good news! 

-Adele Sonora
 

How to Make A Beautiful Life

Love yourself.

MAKE PEACE with who you are
     and where you are
               at this moment in time.

Listen to your heart.

If you can't hear what it's saying
     in this noisy world,
          MAKE TIME for yourself.

Enjoy your own company.
          Let your mind wander among the stars.

Try.
Take chances.

     MAKE MISTAKES.
Life can be messy
               and confusing at times,
but it's also full of surprises.

               The next rock in your path might be a stepping-stone.

Be happy.

When you don't yet have what you want,
          want what you have.
                     MAKE DO.
That's a well-kept secret of contentment.

 There aren't any shortcuts to tomorrow.
     You have to MAKE YOUR OWN WAY.
          To know where you're going
                     is only part of it.
You need to know where you've been, too.

And if you ever get lost, don't worry.
          The people who love you will find you.
                    Count on it.

Life isn't days and years.
           it's what you do with time
and with all the goodness and grace
                     that's inside you.

MAKE A BEAUTIFUL LIFE...
                  The kind of life you deserve.


          * * * * * * * * * *
These words were on a birthday card my Dad sent me a couple years ago.  I was so touched that I saved the card, and just recently came across it -- soon after I learned, last week, that after 6 months of chemo, I"m in full remission!  My PET scan from last week showed I"m completely clear of cancer right now.   

Oh What A Relief It Is. 


-Adele Sonora


 

Chemo is Over

Tomorrow would be the day I'd go back to the infusion center for the next round of chemo drugs.  But it's over!  And I'm trying to wrap my mind around that.   

After six months and six rounds, I wanted to feel overjoyed when I finished the two days in May.  Even like celebrating.  But I knew the month to come would be another rough one as the drugs did their thing.  How optimistic I was back in December and January.   Since then, the rounds have become cumulative so the fatigue and body-aching just kept ramping up as time went on.  So much so, that I almost nixed the whole thing after the 4th round, not sure I could take anymore.  But I did, and found ways to handle it. 

I know just how my neighbor's
kitten felt the other day -- stuck in a tree
and not sure of the next move.
 

I'm simply wiped out.  Which in and of itself isn't that bad, especially when I remind myself to be more "patient".  It's the body aching that sends me into never never land.  Flu-like aching everyday is a little hard to bear.  Some days are more intense than others. I don't know if it's a side effect from the drugs or my body trying to grow back some white blood cells (especially lymphocytes) that have been killed off.  I guess it doesn't matter. 

This last and final round has proved the most difficult so far. Most days I drift around the house, trying to hang onto the concept of time passing and that no storm lasts forever. 

And I still have a couple more months of this -- the time it'll take for all those white blood cells to grow back.  So I"m not quite in a celebratory mood yet. 

All that being said, I think I'm doing fairly well through the whole process.  I had no flus or colds (except a minor cold in January) because I wear a face mask everywhere I go, when I do go somewhere.  I didn't require any magnesium or potassium or platelet (blood) transfusions and didn't need to be hospitalized for anything.  I've nearly gotten shingles 4 times but knocked those out quickly.  All in all, my doctor said I've done "excellent".  Geez, if this is how excellent feels, I really would've hated to do poorly.  

So, my next PET scan (which shows degree of cancer activity, if any) is the end of June.  That'll be a good milestone. My oncologist thinks I'm totally in remission....many people are with these two drugs. But there's an underlying bit of  anxiety present while waiting for that confirmation. 

Lots of cucumbers and tomatoes already
in my garden that I started in March.
 

In the meantime, I'm rediscovering the pleasures (where there are some) of lots of resting, visiting with friends, and letting the day pass slowly and calmly while I keep gently moving when possible.  I've been able to plant my usual garden which is great -- a little everyday since March.  And I've been reading books again!

 Some of the recent ones:   

• Mastering Miracles - The Healing Art of Qi Gong as Taught by a Master, by Dr. Hong Liu
• Radical Remission - Surviving Cancer Against All Odds (The Nine Key Factors That Can Make a Real Difference), by Kelly A. Turner Ph.D.
• Lots of other cancer-healing and nutrition books til my head is swimming with them 
• Born Fighting:  How the Scots-Irish Shaped America, by James Webb
• The Scent of Water, by Elizabeth Goudge
• Some Danger Involved, by Will Thomas (a few novels even)

I appreciate all the healing thoughts and intentions you all send my way, and definitely appreciate your phone calls (even when I'm unable to call back) and visits.  I look forward to a really good fall, and that's about the limit of my visible enthusiasm at the moment. 

-Adele Sonora

The Most Powerful Medicine

The Most Powerful Medicine

I just finished my breakfast of a grass-fed groundbeef burger and half a plate of cooked spinach.  Seems pretty odd, doesn't it?  Until recently, I hadn't eaten beef for 10 years unless it was put in front of me at Christmas.  Yet here I am, eating it for any meal of the day, almost every day of the week. 

I snapped a pic of these UC Davis
grass-fed cows last spring.  They're
probably part of an experiment.

So here's why.  Anemia (low iron) is common with cancer and cancer treatments which basically means that the red blood cells have less oxygen-carrying capacity.  Not good since most every cell in the body depends on oxygen.

After my surgery last summer where I lost a lot of blood and became anemic, my surgeon (rightly) told me to take iron supplements for a month. Which I dutifully did and even extended it another month just for good measure. I didn't know then that iron feeds cancer cells and I'll never know whether all that iron helped the cancer progress in the fall.

I wish there were some sort of clearing house for all this information.  But there isn't.  We who want to use nutritional, integrative, or alternative therapies to help ourselves have to find it.  One way or another.   

So, with all the volumes of research I've done so far on cancer nutrition, three things stand out as being really good sources of fuel for cancer cells:

• Iron
• Sugar (in all its forms including fruits, and starches that digest quickly to sugar)
• Glutamine (an amino acid we normally need a lot of, found in protein)

It stands to reason then, that the above three would all be eliminated in an anti-cancer diet.  Right?  

Well, yes, except that sugar is the only one that can truly be eliminated (via not eating any type of sugar or starches - all carbs essentially) because our body doesn't need to eat carbs.  We can make sugar (glucose) just fine without eating it.

Pumpkin pie, my favorite.
No sugar of course.

Which means there's still a blood glucose issue because our bodies will work tirelessly at keeping our blood glucose as steady as possible  -- especially for the brain's benefit.  Since cancer cells have access to our blood supply, they have access to our blood glucose. This means that the sugar-eating cancer cells can't really be kept from eating sugar, but maybe can be controlled by keeping blood sugar steady with no insulin spikes at all.  So as not to provide an extra little feast to those hungry cancer cells. 

With iron and glutamine however it's a bit trickier.  We need iron for the oxygen-carrying purpose (to live, in otherwords) and we need glutamine for muscle function, as a brain neurotransmitter, and to replace fast-growing intestinal cells -- just to mention a few of its important functions.  We also absolutely need protein for just about everything in the body, and eating protein is where we get glutamine (one of the amino acids of proteins).  The highest sources of glutamine are meat and dairy, but even plant sources contain glutamine. 

So...how to cut out the cancer feeders iron and glutamine -- without cutting them out.  This has been a recent quandry as I keep fine-tuning my anti-cancer diet.  (More on the actual diet later.)

The answer (so far as I know now)....is to only eat them in food sources, in real food.  With iron, for example, beef has the highest amount of "absorbable" iron.  And spinach has the highest plant source of iron, even though not nearly as absorbable as from beef. 

Heck, I learned this back in college getting my nutrition science degree.  So when my hemoglobin dropped low back in December just before starting chemo, I started eating beef and spinach -- a lot of it.  Before the next bloodwork (2 weeks), my iron was back up in the normal range. 

Who says what we eat doesn't matter? 

After that, I started monitoring my own labs (bloodwork) for everything that might possibly be helped nutrionally. 

There was the potassium a couple months ago.  It commonly drops low with cancer and during chemo (as do other electrolyes and minerals) and lots of people require potassium IV's.  If the sodium(salt)/potassium ratio gets too messed up then fluids can accumulate in the wrong places (like abdomen and lungs).  That's "malignant ascites" and it's only one of the bad things that could happen.   

So there's no way I'm going to let my potassium drop.  Although it started to.  So my nurse told me to "eat a couple bananas every day".  Bananas are one of the highest sources of potassium (also of starch and sugar, alas) and while I appreciated that she offered me some actual nutritional advice, I figured I could do better than that.  So I started taking capsules of potassium.   When it threatens to get into the low range, I take more, and it comes right back up.  It's almost magical.  Except it's not.  It's just biochemistry. 

Of course there are situations where one could take too much of something and upset the balance of something else, unknowingly.  And that's exactly why, in many people's minds, food sources are the best sources.  It keeps everything kind of balanced in a good way (most of the time).  Turns out, vegetables and all plant sources are full of potassium so it's no secret, or shouldn't be, why many people with cancer heal themselves with lots of plant-based foods (like vegetable juices and vegan diets). 

Coincidentally or not, a plant-based diet also does not provide a huge amount of protein, thereby further depriving cancer cells of another one of its favorite food sources (glutamine). 

The only reason I'm not eating a vegan diet is because I have a blood cancer.  Turns out, there's a metabolic difference between blood cancers (like lymphoma and leukemia) and tumor-type cancers (like prostate, uterine, breast, and lung cancers).  Maybe I'll talk about this in a future post but for now I"ll just say that blood cancers do better with eating meat.  Which I do, but everything else is pretty much vegetables!

Here's my take on one of
the above grass-fed cows (a
watercolor by me).

"My oncologist says I can eat whatever I want" is a common statement from those with cancer.  Yeah, mine says that too.   Unfortunately, he doesn't know much about cancer nutrition.  Why should he, he wasn't trained that way. As he was reviewing all the supplements I take a few months ago, he asked:  "What does Vitamin C do?" I like the fact that he wasn't too arrogant to admit he had no knowledge of basic nutrition science or alternative nutritional therapies (e.g., that Vitamin C infusions kill cancer).

But not as much as I like the fact that my oncologist is an expert at treating lymphoma and leukemia, an expert on chemo drugs, and an expert with other cancer treatments like bone marrow transplants -- all things that could come in handy for me one day.  Those are the things I depend on him for. 

For all the rest, I depend on myself and others who have sought other ways to be helped even more.  Afterall, if the medical world had all the answers, a lot more people would be healing (and surviving) from cancer, wouldn't they?  And I'd happily do as little as my oncologist recommends.  

I write all this because these are the things I've been wrestling with.  I read cancer-survivor blogs, medical research papers (of which there are many on the topics of cancer and sugar, iron, and L-glutamine), lymphoma-survivor websites, and on and on.  A vast amount of knowledge and experience is out there - and not all of it is useful so it has to be sifted through.  I apply what I can to what I know about the body and how it works, and then what's doable for me.  And then try some things.

Haven't tried this yet.  I don't
think it's recommended as part
of an anti-cancer diet.

Of course, diet is not the only important thing in healing cancer. The top four (in my way of thinking) are nutrition, optimized Vitamin D, daily exercise, and sleep/rest (which includes de-stressing and the relaxation response). More on these other things later. 

If nothing else, my dietary interventions have kept me from needing any potassium or magnesium infusions, or being hospitalized, my nausea and other symptoms are fairly minimal in the scheme of things, and I've done pretty well so far during these treatments (so I'm told). Not that they've been easy.   

Could it be true that what we put on the end of our forks matters most?  "Food is the most powerful medicine we have", says Mark Hyman, M.D.   I think I tend to agree.  But then I would, wouldn't I, since I believe in the power of nutrition. 

Aside from all of that, it's been a long month.  I got the chest port put in (surgically) the day before the last round.  I don't like it, but it's useful.  I've had a fair amount of immune-activated body aching on top of the usual nausea, fatigue, and fuzzy brain.  And my next infusion session is already this Thursday and Friday, March 20th and 21st.  Alas, the long month is already over.

Thanks for reading,
Adele

Tired to the Bone

A Huichol shaman from Mexico I worked with once said if you need more abundance in your life, pray for rain.  After days of rain here in California, I'm not sure how much more abundant I feel, yet.  But it helped me feel better about staying indoors, unable to do much.
 

Napping in a sunny window by a 

sparkly vase - how bad

can things be? 

 

After the second round of lymphoma-helping drugs on January 23rd and 24th, resting has been prominent on the agenda.   This round was much harder than the first -- much more nausea and much more fatigue.  I just haven't bounced back.  A deep fatigue has settled in, and most activities, except the most essential, have come to a standstill.  

 

I feel bone tired.    

 

One friend wondered if I feel so fatigued because my body is healing. Unfortunately, I'm still in the destruction phase of things. Part of my immune system is being killed off and that includes the part in my bone marrow. A multitude of really bad symptoms can result, which I haven't gotten.  So I'm reminding myself that some deep fatigue and frequent body aching may not be too bad. All in all.  


Taking it easy is one

of Birdie's specialties.

I try to find other ways to see my situation in hopes of enduring it better. For example, I notice that my two cats don't seem to get frustrated by resting most of the day.  They seem to quite enjoy it, in fact.

So they're my new role models for the moment -- until I get my body back.  Loving what is -- that's the possibility I'm aiming for (thank you Byron Katie).  Not so easy when the hard times come around.

I'm also reconsidering having a line put in before next week when Round 3 begins.  My vein had a rough go last time -- it got inflamed -- and phlebitis is oh so painful.  I'll probably have a chest port.  I don't feel ready for the next round, not at all, but I've got 10 days to work on it.    



My friend Zooey knows
what to do when the need arises.

So while I wait this thing out, I'm realizing what all can be done at home when really really tired.  DVD's, PBS, and Netflix have offered up most of my diversions.  Things like the Story of Ireland, The Celts, and Irish history in general fascinate me right now.  Viewing all kinds of scenic wonders of the world. Watching Julia and Jacques have a go with French delicacies I'll never recreate.  Trying to understand the complex history of India and Pakistan.  Perfecting the art of bubble baths with candles and my recipe for Raspberry-Orange Oat Bran Muffins.  Solving the riddle of the "mystery illness" post-menopausal women seem to get.  How to train a dog to sit in your lap (I don't have a dog).  Learning to clog on utube while laying on the couch. And endless fantasy about Burt Wolf's and Rick Steves' travel destinations.

Best of all, I've had plenty of time to talk to and visit with lots of good friends! 

Friends make the day finer.

It's really good to have friends.  They punctuate the days with warmth, generosity, and kindness. I'm appreciating all my friends and family-friends so much right now. 

So, Round 3 is Thursday February 20th from 10 am to about 4 pm.  I love getting texts during this time, while I get infused in my cushy heated chair.  And the next day from 10 - 11 am, the easy day. 

Everything will be okay as soon as you are okay with everything.

-Michael A. Singer, The Untethered Soul

A Box of Chocolates

I was dreaming about flowers a few days before chemo was to begin the day after Christmas.  It put the idea into my head that having flowers and beautiful music during the process might somehow make it easier.  Maybe it would keep my thoughts flowing in a positive direction. 

And I needed some encouragement because I was dreading "chemo" like I was going in to have something amputated.  Those two C-letter words:  chemo and cancer -- they strike such fear, don't they.  The weeks preceding felt like I'd been shot out of an emotional cannon -- with none of the cool feelings of "flying" but just dread at not knowing whether I was going to land on a soft bush.  Or splat. 

Yet, I'm the one who moved up the day to December 25th; it was orginally scheduled for January 2nd.  The lymph nodes in my chest were pressing on my lungs to such a degree it was getting very uncomfortable so I decided it was time.  Past time, probably.

The second thing I decided was to change my thoughts from having "chemo" to:  "I'm starting two new medications to help my immune system".  That sounds a lot better, don't you think?  Maybe even downright flowery. 

So, the day after Christmas at 8 a.m., I was off to the infusion center.  It was actually pretty nice there. Each little room had a sixth-story window, the chair was heated and reclined into many comfy positions, lots of guest chairs, there was wifii and cable tv, and I was waited on hand and foot. Five nurses to nine infusionees made that possible.  

My dear friends brought me and
flowers to the infusion center.
It almost looks as if
they have halos, doesn't it? 

Unfortunately my nurse said the flowers couldn't stay because of potential allergies and reactions amongst patients there.  But I still had the music and it was really nice to have (I took my computer to listen to Pandora).

Getting the IV in was a bit of a challenge. But I had decided against the two choices given me:  either a picc line in my arm (prone to infection and trickey with  showers) or a chest port (installed surgically and I just knew it would be poking me).  I talked my doctor into not having either of those and just going with the regular old-fashioned IV infusion. Or at least try it that way. 

So as the infusion nurse poked around painfully for a half hour, I just smiled patiently since this is what I had asked for.  Finally a good little vein in my left hand was corraled into participating.  Then through the IV, I was hydrated for an hour and given some anti-nausea, a steroid to reduce inflammation, and benedryl to minimize any allergic-type reactions.  Already quite a few drugs even before the heavy-hitters were pulled out.   

Unfortunately, I still got a reaction.  After a smooth 30 minutes of the ritixumab (Rituxan), my lower back suddenly felt like I got hit with a baseball bat, with some other allergy-type symptoms.  So the infusion had to be stopped several times while I was given yet more benedryl and steroids (a couple whopping doses of hydrocortisone) so my body could adjust to taking in the "mouse protein" -- which is what this monoclonal antibody is made from.  With all that benedryl (same as in tylenol p.m.), it's amazing I never slept while I was there. 

The Rituxan finally went in after many hours and stops and starts.  I hoped the reaction wasn't a portent of things to come.  The second drug, bendamustine, only took an hour to go in.  By this time, I'd been there 10 hours!  It was only supposed to be about 5 hours.  But I was relieved the Rituxan worked out, since that one can be potentially very helpful in lymphoma.  Rituxan goes in and targets the B cells in the immune system (that's where the cancer is in my case), killing off all of them, both good and bad, so that the body can regrow new ones. That's the plan anyway. (The name of the cancer I have is Non-hodgkins B cell follicular lymphoma). 

All in all, it was a cartload of drugs for one day! I apologized profusely to my liver for all it was going to have to process. Then I went back the next day for one more quick round of bendamustine.  Indeed, my liver ached heartily for 3 days. 

Amazingly enough, the first days I felt quite well.  No doubt, all the steroids kept me going for the second day as they tend to remove all inflammation but only temporarily.  When it all comes back, you feel it.  I also was supposed to have insomnia, for maybe a few nights but at least the first night.  I slept just fine.

The third night I had nausea but mostly just some indigestion the first 5 or 6 days, which some DGL (deglycirrized licorice) fixes really well.  The fourth day brought some distressing body aching, but it was also gone after a day and a half.

Every day, though, it was something a little different - like a box of chocolates.  I didn't know if I'd get my favorite caramel almond one, or one of those mushy syrupy pink ones I had to sneak back in the box.  I kind of wondered when things were supposed to get really bad.  But they didn't, not really.  Except for fatigue and some other strange and unpredictable sensations in my body and brain -- it has all gone quite well. 

Several weeks before, as my doctor was prescribing the heavy-duty anti-nausea meds (that I knew I didn't want to take), I said to him:  "Maybe I won't get nauseous."  He paused and looked at me like he was thinking, "Is she an idiot, or just overly naive." He said, "Everyone gets nausea, and everyone gets fatigue." 

The fatigue I definitely had.  It wasn't crushing though, or overwhelming.  I felt sensitive like I needed some peace and quiet, and irritable at times.  Some days were better than others.  After about a week, my energy improved every day. I was able to go for a walk most days -- kind of my barometer of how well things were going.  Even the sores in my mouth the nurses were warning me about never materialized. 

So, was it my secret weapons used for moving the drugs through?  The flowers?  The music?  I also used a couple strategies to potentiate the new "medications", like hot baths afterward to keep my circulation moving.  Coffee enemas greatly helped my liver and brain fog, infrared saunas with lots of fluid helped moved it all through and out, and select supplements kept things working well, like adrenal support which I"m big on.  I had also prepared for the event by optimizing my Vitamin D (really really important even in lesser circumstances) and a few other things to help ease the way. 

Now it's the 14th day after round one.  I feel so relieved I got through it as well as I have - so far anyway.  The main thing is I got through.  I was so very worried about it.  I go back for round two in exactly two weeks (on January 23rd), again for two days in a row.  There'll be six rounds total. 

And now some really good news!  I went back yesterday for follow-up blood tests. Since lymphoma is a blood cancer, what's happening in the blood is always really significant and shows where things are going.  With these two drugs, the white blood cells ("white count") usually drops low -- the lowest point is around the 14th day and then they work back up (hopefully). 

Mine didn't drop -- they're still normal!  This is huge news and shows that I still have some immunity (and the drugs didn't cause the dreaded "splat").  My doctor was surprised my bloodwork looked so good (my anemia even reversed itself), and thinks it's because I started out in such good shape.  Also, some of the lymph nodes (the ones I can feel) have shrunk significantly.  Best of all, the pain in my chest is gone (which means the large nodes there have shrunk too); I even stopped coughing right away.  Amazing!

I've been told that successive treatments can get harder.   In cases like these, I"m glad I like to question everything. So who knows? Maybe things won't get harder.  

Thank you to all my amazing friends and family who brought food and flowers, phone calls, emails, rides, prayers and asking others to pray for me -- I appreciate you all so much!