Adventures with the Candida Diet

Journal from a couple of years ago:

Two days ago, after hearing the dreaded verdict from my naturopath, I began the Candida diet, as per Xandria Williams’ book, Overcoming Candida.

Within 24hrs. of cutting out sugar and dairy, my stomach was in full revolt, rumbling and moaning and begging for a sugar-laden dairy product. There must be something to this, I thought. I was eating at will of healthy staples like cooked vegetables, free-range chicken, whole grains and legumes. How could such a small change cause such gastronomic distress!

I spent the weekend in the kitchen in a baking frenzy, trying to whip up supplies of food I could actually eat during the week.

Here are some of my experiments:

Carob Hempseed Stevia Brownies: (pretty good!)
I modified the recipe off the Bob’s Red Mill sack in order to boost both the nutrition and the flavor, and was pretty happy with the results. I blissfully downed four “brownies” when I got the munchies at the office, knowing that despite the scandalized glances of my co-workers, I was only actually taking in about 200 calories - mainly protein, fiber and vitamins. Oh, the irony.

Carob Brownie Recipe:

1c. wholemeal flour
1/2 c. carob powder
1/4 c. (or less) Nutiva Hemp Protein powder
1/4 tsp. Stevita liquid stevia
2 eggs
1/2 c. butter or oil
1 T. cinnamon
1 T. vanilla
chopped pecan

Miracle Baby (cont'd)

So, after flying from WA to Michigan to undergo an ovarian transposition, I returned home for a month of radiation. Sometime during chemo I had begun moving through patches of hot flashes and hormonal menopausal road rage, as my ovaries shut down from the influx of chemicals. We went to Pacific NW Fertility clinic in downtown Seattle, next door to Swedish, for an evaluation of our chances at conceiving another child. The specialist there did an ultrasound on my connected ovary (hilariously, she could not locate the other one despite half an hour of trying). Apparently, yet another thing that oncologists don't often think to mention to their patients is that chemotherapy causes ovaries to "hemorrhage" eggs, and I had very, very few eggs left. We were told that the few remaining eggs were too fragile to survive an in-vitro attempt, and that embro adoption was a good option for us, as my uterus was in pretty good shae and I could still carry a baby. I could expect to enter a permanent menopause shortly, and our chances of conceiving even with fertility drugs were considered almost nil.

My husband wasn't worried. With his constant, annoying optimism, he told me, "I'm not worried.. I just think we're going to have more kids." I tried to beat it into his head - "Honey! You just don't get it! We're done!" A few months later, I experienced massively fertile signs (learned from Natural Family Planning) and didn't think much of it. But my body knew what it was doing! I imagine my body knew it had come up with a perfectly preserved, ripened egg and it damn sure wasn't going to waste that egg! So my hardworking, faithful old body put all of its energy into manufacturing cervical fluid and making everything just perfect for conception. A few weeks later when I hadn't had my period, I still wasn't getting excited - it was at that time a faithless companion, coming and going at will. But when I began feeling nauseous, I pulled out an old test just to set my mind at rest. The line appeared. I stared in disbelief and went back and read the instructions on the pamphlet again. No mistake!

Even then, it took a few months for me to realize that the pregnacy was real and probably going to stick! I kept expecting a miscarriage, a tragic disappointment, and so I reined myself in and disallowed any enthusiasm for this little one until the second trimester was in full swing. "Hm," I thought, "maybe the little guy is going to stick around after all!"

Bryan and I both had a gut feeling that our baby was a boy this time, well ahead of any chance at a gender check. I started picking up baby boy clothes and collecting a list of boy names, despite my own protests at my "ridiculous" behavior. I half-heartedly picked through girl clothes, girl names as a gesture, but inwardly something told me, "You won't need those."

Sure enough, the ultrasound revealed a boy!

This baby never would have been if I had listened to the first gynecologic surgeon without seeking a second opinion. This surgeon had come highly recommended by my oncologist, whom I greatly respected. .

I learned a HUGE lesson: ALWAYS question everything during cancer/medical treatment. If you don't like it, ask again. Ask someone else. Ask again. Is there another way we can do this? Really, it is YOUR life; this matters the most to you. The medical staff can handle your polite assertiveness! Time and time again I have discovered that actually, there is usually another way of doing things that is less painful, less embarrassing, less damaging, and YOU will be the only one to care enough to press the medical professionals into remembering the other options. Don't be afraid! It is their job to take care of you and you need to help them learn how best to do that.

1. When I was at Island Hospital, recovering from my C-section with Elijah, I was dismayed to learn that there were only three milkshake options on the menu: chocolate, strawberry, and vanilla. I was madly craving a chocolate peanut butter millkshake. Using my newfound theory on medicine, I wrote a nice note on my order form, begging for a PEANUT BUTTER chocolate milkshake. Guess what? The people filling my order were compassionate human beings, and I got my milkshake.

2. I never imagined that the technicians would be routinely using larger needles than necessary to do my blood draws, but they were. After much caterwauling, a kind-hearted nurse offered me a butterfly needle, useable for most blood tests. Much smaller and usually used on children. But since I was bursting into tears with every draw, I sweetly demanded a butterfly needle for every test after that.

3. I spent my first two scans, MRI and PET/CT, in incredible pain because of the positioning. During the MRI there was nothing to be done, but after mutely enduring the PET/CT, shaking and moaning with tears running down my face because of the overwhelming pain, I was told that actually, it is possible to move between segments of the scan. A great technician worked with me after that, allowing me as much movement as possible, and the pain went down to almost zero. If only I had hollered out immediately, I would have been saved that first traumatic, helpless experience! If it hurts, ALWAYS, ALWAYS say something.

And for sure, there is much, much more.

A Miracle Baby

Today Elijah Luke is 10 weeks old. He is the baby we never thought we'd have.

Because I had a large tumor growing through my pelvic bone, Dr. Milder at Swedish Cancer Institute recommended radiation following chemotherapy, "just to make sure" the tumor didn't decide to grow back there. PET/CT scans as well as blood tests for tumor growth factor had shown no trace of cancer, but apparently there still could be microscopic particles too small for detection.

I made an appointment to see a gynecologic surgeon, because my ovaries were in the radiation field and would likely be torched by the radiation process, failing and sending me into premature menopause. This would put me at risk for early heart disease and osteoporosis. I was completely stunned to learn that what Dr. Milder had casually referred to as "moving your ovaries" in fact involved surgically severing both my fallopian tubes, akin to a tubal ligation or "getting your tubes tied". We had always wanted more children, and when I began chemo both our oncologist and his nurse had assured us that other patients had gone on to have children post chemo.

When I asked Dr. Drescher and his nurse if the procedure could be performed without severing my fallopian tubes and rendering my infertile, the nurse actually laughed at me, and Dr. Drescher looked at me with pity. He said he could leave one ovary in place, but that would place me at higher risk for ovarian failure, which would jeopardize my overall health.

I went home in tears, having scheduled the procedure, feeling hopeless and out of options. We dearly wanted more children, but not at the possible cost of my life.

Thankfully, my mom jokingly refers to herself as "Dr. Google". She immediately went online and soon discovered a wonderful guy named Dr. Arnold Advincula, a talented surgeon at the University of Michigan. Dr. Advincula does robotic laparascopy using the Da Vinci system. He operates the controls like a video game, sitting across the room and controlling stainless steel, robotic arms inside the patient's body with precise hand movements. He had recently done an ovarian transposition, stretching out the fallopian tubes without severing them, on a woman who later became pregnant and gave birth to a healthy baby.

I shot off a desperate email plea to Dr. Advincula. His office staff would not allow me to speak with him because I was not a patient, and I had little hope of getting his attention. Incredibly, he wrote back, and soon followed up with a phone call. He asked to review my medical records, and quickly decided that I was a candidate for the procedure. He agreed to move my ovaries out of the radiation field, keeping one ovary connected but severing the other and hiking it up near my hip.

Thanks to our church and community, we had the $1,000 we needed to purchase two plane tickets to Michigan, one for me and one for a dear, faithful friend who agreed to chaperone and drive me around.

Body Image

What to say? My body has been ravaged by lymphoma, and I am one of those who got off easy. I am cancer free and missing no limbs or visible body parts, unlike other friends I know.

But when I look in the mirror, there is a thick, raised purple scar above my right breast from where a port was placed and then removed. My skin is striated, laced with grey stretch marks around my abdomen from steroid-induced weight gain, the hateful tire I wore around my middle until a year of dedicated weight training and no desserts slimmed it away. My legs and ankles have sprouted new crops of varicose and spider veins through weight gain and two pregnancies.

My abdomen has five scars across it, fading pink, from the ovarian transposition I had in order to move my ovaries out of the radiation field in my pelvis. And two months ago, the birth of my son turned into a frightening, invasive procedure as we were rushed into the OR for an emergency C-section. I now sport a dark purple slash across my belly that burns and tingles numbly.

I miss my old body that was 130 lbs. of lean muscle, a hiking and biking and swimming body. I miss my abs, the hint of a six-pack, and having flawless skin on my chest.

When I try to weed or do house cleaning, my hands complain by going on strike the next day, aching, swollen, fumbly and clumsy. I don't know if this is a lingering effect of the vincristine, which causes peripheral neuropathy (tingling and numbness in the extremities), or from pregnancy Carpal-tunnel syndrome.

I find it difficult to discern which of my ailments are from chemo, and which simply a result of aging. I feel prematurely old, like an old, old woman sometimes. I will be 30 yrs. old this January. I have a permanently gimpy leg, it seems, from where the 6" long tumor was dissolved from my pelvic bone. I can't sleep on anything but a very soft mattress, because my bones will ache (no camping pads!). If if forget myself and sit on a hard surface, like a step or the floor, when I try to get up I am quickly reminded by a shooting pain that courses down my leg and buckles my foot from under me.

But with all of this kvetching aside, I am ALIVE. Alive!! I am here to flop around the kitchen with my daughter riding on one foot, a living "size 34" sneaker. I am here to nurse my little baby boy, watching him transform day by day into the young man he will be. I am here to go swimming in the lake with my husband, to watch the mighty red sun rise out of the sea at 5am in the summertimes, to be among dear beloveds. Sometimes I pause for this battered, scarred body that has suffered through so much and carried me through so many procedures and so much pain, and I say, "Thank you, old body. Thank you for keeping on and not ever giving up." Because I feel toward my body like one does toward a faithful old plow horse, not as swift or strong or lovely as she once was, sagging a bit around the edges but still dear and affectionate, a steady friend with whom one can comfortably grow old.

Cleaning out the Garage

I've been working at whittling away our belongings in storage and am confounded by the amount of too-large clothing I find there for my daughter, now almost four. And then I remember. Back when I was going through chemotherapy, I wasn't sure I would live. And I wanted my daughter to have clothing that her mommy had picked out for her.. so I purchased and hoarded bins full of clothing all the way up to size 6 yrs.!

I realize that, now two years out from cancer treatment, I have found freedom from that fear to such an extent that I don't really buy my daughter clothes at all anymore. She is regularly given boxes of hand-me-downs by friends, and it doesn't bother me much that I haven't picked them out myself. .

Writing in the Dark

"It's not that difficult.
Anyway, it's necessary.

Wait till morning, and you'll forget.
And who knows if morning will come.

Fumble for the light,
and you'll be
stark awake, but the vision
will be fading, slipping
out of reach.

You must have paper at hand,
a felt-tip pen, ballpoints don't always flow,
pencil points tend to break. There's nothing
shameful in that much prudence; those are our tools.

Never mind about crossing your t's, dotting your i's-
but take care not to cover
one word with the next. Practice will reveal
how one hand instinctively comes to the aid of the other
to keep each line
clear of the next.

Keep writing in the dark:
a record of the night, or
words that pulled you from the depths of unknowing,
words that flew through your mind, strange birds
crying their urgency with human voices,

or opened
as flowers of a tree that blooms
only once in a lifetime:

words that may have the power
to make the sun rise again."

- Denise Levertov

Romancing the Bean

Both chemotherapy and antibiotics tend to throw off the balance between beneficial bacteria and yeasts in the body. I am finding that my body is not in harmony and in need of some re-balancing, evidenced by the presence of various unwelcome fungi! I have begun a Candida albicans-eliminating diet this week. The diet allows absolutely no sugar, no milk, cheese, bread, or vinegar, very little fruit, and lots and lots of vegetables, beans and meat. This disallows many of our traditional North American, calorie-dense foods, and in consequence I am hungry ALL the time! My stomach isn't used to handling the bulk of food required to find enough energy for the day. It has also been shocking how few commercial foods are truly real- sugar free, without nasty substitutes!

The beauty of this diet is that it demands utter nakedness in your relationship with food. I recently picked up Joanne Saltzman's cookbook, "Romancing the Bean". It is an intimate introduction to all sorts of beans, including ancient history and cultural cookery nuances. It has struck me that "romancing" beans, or anything else, requires bareness and simplicity. This Candida diet cuts out the sugar and other distractions with which we tend to douse true, nourishing food. I have been startled by the joy of eating, for breakfast, a bowl of plain, raw oats with sunflower seeds and unsweetened soy milk in all of its beany glory. How wonderful, to roll the texture of the oats over my tongue and really taste their flavor! True fuel in the tank.

Alexander Solzhenitsyn wrote an incredible book about the Soviet Gulags called, "One Day in the Life of Ivan Denisovich". This supper scene is etched into my mind:

“It was at this evening count, when they returned through the camp gates, that the prisoners felt most weather-beaten, cold and hungry – and their bowl of thin, hotted-up cabbage soup in the evening was, for them, like rain in a drought. They swallowed it in one gulp. The bowl of soup was more precious to them than freedom, more precious than their previous life and the life which the future held for them.”

“Shukhov ... began to eat. First of all, he drank just the watery stuff at the top. As it went down, the warmth flooded through his whole body – and his insides seemed to be quivering in expectation of that gruel. Goo-ood! It was for this brief moment that a prisoner lived!

I will be beginning to understand true nourishment when simple, unadulterated meals become as precious to me as gulag gruel.

Our Friend Neigh

A Bun Dance: Word Play for the Day

Abundance:

What a feast of mental imagery!

Definitions yielding themselves:

a. a*bun*dance: Medieval merriment, in which buns are an intrinsic part of the festivities. May include games (such as bun eating contests), the playing of the song, “Hot Cross Buns”, or the mass movement of many derrieres.

b. a*bun’dance: Rare. Conjunction for “a bunny dance”, in which bunnies do as bunnies do, yielding a multitude of bunnies.

Oh, such fun! Please do join in. :)

A Pox of Poodles

A Shiggaion of Kris, which she sang to the Lord
> concerning Rita and Loralei, the Poodles.
>
>
> Oh, Lord, who hath a sense of humor,
> Give ear to my words; consider my sighing.
> Come quickly to help me, for on all sides I am
> surrounded by poodles.
> Their snufflings rise up to my neck. They tickle.
> By day and by night, their barking pursues me;
> they are ever with me - when I sit, and when I rise.
> They flood my bed with muddy paws, and my couch with
> fleas.
> They hear cars drive past from afar.
> Their eyes never cease roaming to and fro across the
> kitchen floor, seeking what they may devour.
> The cat trembles.
> The neighbors moan.
> Is there no rest for the weary?
> Why do the house pets conspire and the poodles plot
> in
> vain?
> Surely, O Lord, you have heard my cry.
> Away from me, all you who have long snouts and sharp
> teeth.
> He who digs a hole and scoops it out will fall into
> the pit he has made.
> I will lie down and sleep in peace, for you alone, O
> Lord, make me dwell in safety.
>
> (a semi-plagiarism of David)
>

The River Merchant's Wife

I am haunted by the words of this poem by Li Young Lee. It is perhaps the most lovely, patient tale of deepening love and terrible longing I think I have ever read. I find it astounding - so very quiet.


The River Merchant's Wife


While my hair was still cut straight across my forehead
I played about the front gate, pulling flowers.
You came by on bamboo stilts, playing horse,
You walked about my seat, playing with blue plums.
And we went on living in the village of Chokan:
Two small people, without dislike or suspicion.
At fourteen I married my lord you.
I never laughed, being bashful.
Lowering my head, I looked at the wall.
Called to, a thousand times, I never looked back.

At fifteen I stopped scowling,
I desired my dust to be mingled with yours
Forever and forever and forever.
Why should I climb the look out?

At sixteen you departed,
You went into far Ku-to-en, by the river of swirling eddies,
And you have been gone five months.
The monkeys make sorrowful noise overhead.

You dragged your feet when you went out.
By the gate now, the moss is grown, the different mosses,
Too deep to clear them away!
The leaves fall early this autumn, in wind.
The paired butterflies are already yellow with August
Over the grass in the West garden;
They hurt me. I grow older.
If you are coming down through the narrows of the river Kiang,
Please let me know beforehand,
And I will come out to meet you
As far as Cho-fu-Sa.

Tr. Ezra Pound

Hot Flashes

This past month I have been learning great compassion for menopausal women; I am having hot flashes and they are INTENSE! I wake up multiple times in the night burning and feverish, drenched in sweat, and throw off the covers, only to find myself freezing cold. Sigh. It is a bit wearisome, not to mention embarrassing when I'm in a meeting and I suddenly turn red and start to perspire! This last week it was Rosa Montgomery's Bible study, and the fiftyish-plus aged women just laughed and said, "Oh, honey, we've all been through that!" It was kind of cute, actually.

My nurse tells me that this is just a result of the chemo; I'm in a menopausal state because the R-CHOP drugs can shut down your ovaries. Thankfully, this will probably be temporary.

I'm meeting with my naturopath next week and will see what she prescribes. I have read that hot flashes can actually deplete your body of nutrients, so I'm looking into nutrient replacement as well as options like phytoestrogens and Chinese herbs.

Common Prayers

COMPLINE

Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep.
Tend the sick, Lord Christ;
Give rest to the weary;
Bless the dying;
Soothe the suffering;
Pity the afflicted;
Shield the joyous;
And all for your love's sake. Amen.
 

O God, your unfailing providence sustains the world we live in and the life we live:
Watch over those, both night and day, who work while others sleep.
Grant that we may never forget that our common life depends upon each other's toil;
Through Jesus Christ our Lord. Amen.
Book of Common Prayer, page 134


Prayers for Use by a Sick Person
 
In the morning

This is another day, O Lord. I know not what it will bring forth, but make me ready, O Lord, for whatever it may be.
If I am to stand, help me to stand bravely.
If I am to sit still, help me to sit quietly.
If I am to lie low, help me to do it patiently.
If I am to do nothing, help me to do it gallantly.
Make these words more than words, and give me the spirit of Jesus. Amen.

 
For Sleep
 
O heavenly Father, you give your children sleep for the refreshing of soul and body;
Grant me this gift, I pray; keep me in that perfect peace which you have promised to those whose minds are fixed on you;
And give me such a sense of your presence, that in the hours of silence I may enjoy the blessed assurance of your love;
Through Jesus Christ our savior, Amen.
Book of Common Prayer, page 461


For the Sanctification of Illness

Sanctify, O Lord, the sickness of your servant, that the sense of his weakness may add strength to his faith and seriousness to his repentance;
And grant that he may live with you in everlasting life; through Jesus Christ, our Lord, Amen.
Book of Common Prayer, page 460


Ministration to the Sick: A Collect for Doctors and Nurses
 
Sanctify, O Lord, those whom you have called to the study and practice of the arts of healing, and to the prevention of disease and pain.
Strengthen them by your life-giving spirit, that by their ministries the health of the community may be promoted and your creation glorified; through Jesus Christ our Lord, Amen.
Book of Common Prayer, 460

A COLLECT FOR THE AGED
 
Look with mercy, O God our Father, on all whose increasing years bring them weakness, distress, or isolation.
Provide for them homes of dignity and peace; give them understanding helpers, and the willingness to accept help;
And, as their strength diminishes, increase their faith and their assurance of your love.
This we ask in the name of Jesus Christ our Lord. Amen.
Book of Common Prayer (1979), page 830

Port-o-caths

Notes on port-o-caths:

When I was first diagnosed, a technician warned me that chemotherapy will actually eat away your main arm veins if administered through the arms. The veins will re-grow, but only as a network of thin, "spider" veins. The alternative offered by my oncologist was to have a port surgically implanted into my chest. The port consists of a round metal box (about the size of a small spool of thread) with a special rubber seal on the top, connected to some plastic piping that is threaded up under the skin and hooked into the jugular vein in the neck, just above the heart. This way, the chemo needle is inserted through the skin on my chest, through the rubber seal, and the drugs flow into the bloodstream and drop directly into my heart.

The last time I went in for chemo, there was a tiny blood clot clogging the port so the nurse couldn't get a blood return. They had me do "port calisthenics", hopping up and down and waving my arms over my head, but to no avail. Finally they injected a blood thinning drug to dissolve the clot, and after 45min. the port was open again, so they were able to proceed with chemo. Because some of the drugs are vesicants, which cause terrible tissue damage if they escape the veins and touch any other body tissue, nurses normally won't administer chemo unless they are absolutely sure they are in the vein. (A blood return is the best way to be sure.)

Does port access hurt? Yes, but not too much. They usually use a small shot of lidocaine, which stings, to numb the area before pushing in the larger chemo needle. You can ask for Emblen cream, which will numb the area so that you don't even have to endure the first injection. I recommend the no pain approach, since there are so many other things that hurt in the cancer treatment process that are unavoidable.

After chemo is completed, the port can normally be surgically removed. The surgeries are considered minor and take only an hour or so, and I was able to return home the same day.

#23 Butterfly Needles

If you are going through chemo or cancer treatment, it is likely that you have become well acquainted with blood draws and IV needles. Just for the record, it IS possible to draw viable blood samples from adult veins using the tiny #23 butterfly needles. I only found this out recently when I confessed to my nurse that I have begun bursting into spontaneous tears every time a needle enters my skin. This reaction has increased over the past few weeks as my scarring veins put up more and more resistance to the needles. "Oh!" She said. "We can do something about that!" Silly me, I had assumed that all medical personnel were doing the least damage physically possible to my body under the circumstances. I am learning that it is almost always best to (politely) complain, because sometimes there is actually something more that can be done to alleviate your pain. Even great nurses and doctors just don't think of everything.

Another thing that I have found helpful is the Emblen (sp?) anesthetic cream. My oncologist didn't think to prescribe it, but I got a tip from one of the phlebotomists/ AKA: blood sucking needle wielders. I have been using it before I have to have my port accessed, and now have also started applying it to a likely spot on my veins about an hour before scheduled blood draws. Now I can look the other way and don't even feel the needle sliding in - sigh of relief!

If anyone gives you any guff about blood cells lysing because of the small needle, ask them to use a slow, controlled hand syringe instead of the high-pressure vaccuum tube normally used with large IV needles. According to a friend who has lab experience, it is only a rushed job that will ruin a blood sample taken with butterflies. If anyone resists my request at this point, I intend to firmly demand justification from a supervisor! ;)

Denise Levertov

I am reading with great enjoyment a book by Denise Levertov called, "This Great Unknowing: Last Poems", a compilation of her last forty poems. Here is one of my favorites:

Patience

"What patience a landscape has, like an old horse,
head down in its field.
Grey days,
air and fine rain cling, become one, hovering till at last,
languidly, rain relinquishes that embrace, consents
to fall. What patience a hill, a plain,
a band of woodland holding still, have, and the slow falling
of grey rain... Is it blind faith? Is it
merely a way to deeply rest? Is the horse
only resigned,or has it
some desireable knowledge, an enclosed meadow
quite other than its sodden field,
which patience is the key to? Has it already,
within itself, entered that sunwarmed shelter?"

There is a powerful sense of quietness about her poems. Levertov is a fine poet.
I can't resist adding a few other lovely portions:

Once Only

"All which, because it was
flame and song and granted us
joy, we thought we'd do, be, revisit,
turns out to have been what it was
that once, only; every initiation
did not begin
a series, a build-up: the marvelous
did happen in our lives, our stories
are not drab with its absence: but don't
expect now to return for more. Whatever more
there will be will be
unique as those were unique. Try
to acknowledge the next
song in its body-halo of flames as utterly
present, as now or never."


from Immersion:

"There is anger abroad in the world, a numb thunder,
because of God's silence: But how naive,
to keep wanting words we could speak ourselves...
God's abstention is only from human dialects. The holy voice
utters its woe and glory in myriad musics, in signs and portents.
Our own words are for us to speak, a way to ask and to answer."


from Noblesse Oblige

"(Meanwhile,
the April sun, cold though it is,
has opened the small daisies,
so many and so humble they get underfoot-
and don't care. Each one
a form of laughter.)


from Translucence

"This great unknowing
is part of their holiness. They are always trying
to share out joy as if it were cake or water,
something ordinary, not rare at all."

Contemplations on Immortality

I have just completed my 8th session of Rituxan plus CHOP. Such a strange feeling; now a month of unknowing and waiting to see what will happen next. I have heard this time described as the hardest part of cancer treatment. At first there was a hard focused goal, to survive chemo. Now I am only waiting, recovering from the last dose of cytotoxic drugs, and thoughts of death keep slipping into my mind.

A dear friend is visiting and I keep thinking, "If I die, maybe my husband should marry her; she would make a great mom to my baby girl". Thoughts persistently flit through my mind like this. What should I do with the remaining time? Rest and try to recover? Or run outside into the stormy wind and rain and feel the cold sting on my face, fling my body relentlessly into life and burn up the small energy I have left? I so want to feel everything before I go - there is so much more to love, to listen to, to experience and learn.

The time left is never enough, I have realized, whether I go soon or am given another twenty years. The immortality of the human soul is the most keenly felt before death. This is when it strikes home with absolute assurance: this is not all there is. There is more to life than earth, than death. Most people, regardless of their faith, seem to ultimately think of death as a journey or a passing on. Most hearts balk stubbornly at the thought of loved ones ceasing to exist altogether; we cannot accept it. Sometimes it is only on the brink of the goodbye that we realize how firmly implanted in us this belief is. "He has written eternity on their hearts", it says of us in Ecclesiastes.

Psalm 23 says, "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." I have felt the presence of Jesus in this time, in the form of a sweet peace and rest. He surely walks in the valley of the shadow of death, walks with all who dwell there or are passing through. I am not afraid to die; I know that only by the grace of Christ I am forgiven of all guilt in my life. I throw myself entirely on the mercy of Jesus Christ, who died on the cross, and trust that Jesus will take me to be with him when I die. I have not earned my way anywhere; I only believe the promise, "Believe on the Lord Jesus Christ, and you will be saved.", regardless of the amount of guilt, shame, and failure I have brought upon myself during my life.

I know that in heaven "there will be no more tears, or mourning, or crying, or pain, for He will wipe every tear from their eyes" (Revelation). "Man is born to trouble as surely as sparks fly upward," (Proverbs), and I would gladly exchange the pain and struggle of our broken earth for the reborn beauty of an unmarred creation. But I have not been able to get to the place where I would willingly abandon my husband and one year old daughter. This is where I "rage, rage, against the dying of the light", asking repeatedly for more time to raise my baby, to love my husband. I am not ready to go, not yet. I will be like the parable of the widow seeking justice from an unjust judge, who so relentlessly queried for justice that the judge, though he was not just, finally gave her justice. Perhaps, I think, the Lord will weary of my requests and in compassion grant me what I ask. I do not know. I do trust that perfect wisdom upholds every detail of life, suffering and death on this earth, though I do not understand. I do know that the love of God is perfect, though so often the world is twisted with pain and unimaginable evil. Immortality means to me that someday all of this should become a little more clear.

Helping Hands Along the Way

This entry is a tribute to all our wonderful friends and family who have lifted us up on many, many hands and on many prayers all this way. There is a shoebox under our couch stuffed full of lovely cards and letters of encouragement from dear ones, and on a bad day I can take that box out and sift through, reading encouraging notes and Bible verses and reminders that we are loved and cared for by people and by a sweet heavenly Father. Some of the helpful things people have done for us, practically speaking: When I was very very ill, troupes of ladies came from our church and spent time cleaning our house once a week. Meals were arranged twice a week, often large enough for a couple of nights so that my hard-working husband did not also have to cook when he came home from work to take care of our baby daughter and put us both to bed. Now that the cancer has receded, we get two meals the week after chemo until I am well enough to cook again. When I first got sick, my employers set up a medical fund at the local bank where friends and church members deposited cash donations. Our church also accepted donations on our behalf, and simply sent us a check of the funds. My mom's group held a 4th of July bake sale at the grocery store and put up signs explaining that it was to help me fight cancer. We have been able to pay all of our medical and living bills since April, when I was diagnosed, because of this amazing generosity! My employers not only generously kept me on health insurance, but also have allowed me the freedom and flexibility to come and go at work as I have the strength, relieving me of the pressure to perform when I feel terrible. Everyone has been so kind and helpful. I surely could not ask for a better community.

History: Chemotherapy - Infusions

October 29, 2006

CHEMOTHERAPY

I just thought that sometime I will forget, as happens, what this time was like. I want to be of help to those I may encounter in the future who are going through cancer, so I had better write down a bit.

Having cancer is disorienting: you don’t know how to plan your life. As if suddenly the rush and whirl of life is suspended in freeze-frame, and you’re caught there in the air gaping like a fish. All major decisions must be delayed; you are slung from cosmic ropes like marionettes awaiting the next flip of the cords. In that waiting, pondering what it would be like for your child to grow up without her mother, for your husband to raise your daughter alone.

But you can’t think about that, you can’t think that way; you are determined that you will be there for all of that life ahead, so you charge ahead as soon as the energy revives, and then another chemo appointment comes and you are flat on your back waiting again.

As the drip finishes in the hospital each time, my nostrils start to burn something fierce, and all the involuntary snorting and gagging does nothing to dislodge the burning. I start to feel weak as they unhook the tubes and tell me to take a deep breath, yank the needle straight out of my chest. They cover the large needle hole with gauze and I press on the pad, hoping the blood will not run down into my shirt again on the way to the car. All the strength has left my body. I just want to lay down and find oblivion. My head hurts. My husband walks me down to the car and I climb wearily into the passenger seat, slumping against the door. Sometimes I throw up that night. The next day I go in the morning and get the Neulasta shot in my belly fat. If it is cold, it really stings. Sometimes the nurse will warm it in their hands before giving it, and that helps.

By that afternoon or night, the Neulasta has kicked my butt, leaving my body aching all over like I have the flu. My throat and neck get swollen and it aches to take a deep breath. This lasts for about three days. I also get a shallow, nonproductive, restricted cough that won’t go away, but lessens before the next session. I don’t want to talk to anyone for the first week because my throat is filled with mucus and I drool constantly, spitting and gagging unless I am eating. I lost weight after the initial surgery and chemo, because of the nausea, but since then I have gained 20 pounds from eating to quell the nasty feeling in my mouth, throat and GI tract. It’s better than getting too skinny, I know, but it’s just an exhausting undertaking to swap out all my clothes again for my dreaded pregnancy clothes. I miss my favorite jeans.

Prednisone: Each day after chemo for five days I have to take Prednisone, a sick nasty pill I can only choke down with gulps of chocolate milk. I dread it every morning, gagging if I look at the bottle. By the time the Neulasta and initial chemo effects have worn down, the steroid pills have worked my shoulders and upper back into tight whorls of knots and I try to set up a massage appointment, one of the loveliest parts of life lately. ;) The massage seems to help, and my oncologist gave me a prescription, so it's paid for by my insurance, hooray!

Stomach Pain: Dr. Milder had given me lorazepam/adivan and promethazine for anti-nausea, but they both really knock me silly for a long stretch of hours, so now I rarely take them. I take an herbal remedy pill that coats my stomach, drink “Stomach Ease” herbal tea, and with each meal take a digestive enzyme from the Seattle naturopath, Dr. Labriola. My entire GI tract is huge, swollen, distended from being killed off by the chemo. I drink kombucha, a fermented tea (guava is my favorite) and eat yogurt to help restore the natural flora. It eases after a few days and lowers into a vague stomach unease. I've also found VeggieDelight helpful, a blended jar of fermented vegetables they sell at our local health food store.

Insomnia: The prednisone gives me insomnia and I often can’t sleep until 1am. For a while, the calcium/magnesium pills from the naturopath were helping me to sleep, but the last couple of times it just hasn’t been working. A friend just gave me a little baggie of melatonin, and that has been working like a charm. Melatonin isn’t addictive, also. I read somewhere that sleep is one key factor in helping cancer patients recover, so I value it highly right now. I think the melatonin might cause crazy dreams!

Vitamin D: I’ve also read about the importance of vitamin D, so I’m trying to get myself and my baby girl out into the sun to soak up some rays every afternoon, after this first terrible week when I lay on the couch waiting. The sun feels so good. Now that it’s fall the air is turning very chill and we can’t expose our skin to its rays. Spring will be welcome. I read a few articles on PubMed and apparently the amount of skin cancers has decreased as people use more sunscreen - but the amount of far more serious, deadly internal cancers has increased because people aren't getting enough sun for their bodies to create sufficient vitamin D.

Neuropathy: My fingers started to turn numb after a couple of chemo sessions, and the numbness has crawled down my hands into my wrists and turned into a throbbing, aching pain. It’s nerve damage from the chemo leaking out of the capillaries in my fingers, caused by vincristine, part of the CHOP regimen. When the pain got to this point and my typing started to really go, Dr. Milder decided that I could skip the vincristine for my 7th chemo session. Glory be!! I was so happy. Massage seems to help me to regain feeling and to lessen the pain, too.

Acupuncture: My acupuncturist says he can help this neuropathy to heal more quickly, and I’ve been seeing him about every two weeks. He has helped a bit with the psycho “monkey brain” and insomnia from the steroids, and with the headaches, too. He also does points to support my liver and kidneys, under attack from the chemo. The needles do hurt, but I am getting used to it and it’s not too bad. Just tiny pokes. At first, the needles sent jolts of electricity down my wrists and ankles, quite painful, but that hasn’t happened for a while.

Music: My mom sent me a few CDs, mentioning a study in which music significantly relieved pain. I have found much relief in beautiful, soothing music, and have spent a while on ITunes, trying not to buy too many songs! It really helps. I have found that in the first week of pain and nausea, anything that takes me out of my body is helpful. Movies, thrilling novels, music, and entertainment all help to relieve the awareness of pain for a time.

Associations: The mental associations with chemo have just been growing every time we visit Swedish. This time we went down a day early to see Dr. Milder, and even though I had no chemo, I started drooling when we walked down the hospital hall. That afternoon I felt knocked out and weak, almost as if I’d had an infusion! If I look at something that I wore down to Seattle before it has been sent through the laundry, I gag. If I see or think about food I ate in the chemo infusion room, I’ll gag. I am taking care not to allow any patterns to build up around our visits, as much as possible; we stopped getting those delicious peach filled piroshkis after a couple of visits, and we try to buy lunch from a different store every time. The hospital provided lunches just make me nauseous at the thought! I wear different outfits each time, even though it’s hard to find something that is low cut enough for the needle to access the port on my chest. (Sometimes I slink into the hospital feeling like a hoochie-mama with all that sexy cleavage showing - oh well!) I don’t want to have to throw out any of my clothes just because they have too strong of a chemo association! Sometimes lately I’ll just be talking and if I say a certain word like “Prednisone”, “chemo”, or “nasal burning” I’ll involuntarily gag or snort through my nose as if trying to blow out the water that is burning.

The Good Parts: Chemo is working!! The Rituxan/rituximab has already done wonders, removing almost all pain from the main tumor within two sessions. Amazing. After the first eight days or so, I begin to feel a lot better and to really enjoy life again. The most lasting effects have been a general weakness, dizziness and lack of breath. They say it will take about a year to really recover my strength, but I definitely feel able to play and to enjoy life, just at a slower pace, the last week before I go back for the next chemo. This gives me good hope that a couple of weeks after my last chemo, I will be able to be up and to work and play with my family in a good way. I just have to take it slow and easy as we go.

Still ahead: One more chemo. One month of daily radiation, and surgery to remove the port-o-cath.

Introduction

Today is the beginning of my very first blog. I was diagnosed with lymphoma in April 2006, and wanted to share some of my experiences with others to whom it may be of use. If you are going through cancer treatment, or know someone who is, I hope that this blog will be helpful as you navigate the stormy waters. Cheers!