If I had known I could have a painting in my hair, I would have done this a long time ago...
One of my goals over the last four years has been to confront my fears. I've always wanted to dye my hair but was afraid to. It occurred to me that I was less afraid of using purples and blues than "natural" colors... This is what happened... I like it.
If you want to get some vivid colors in your hair look up Special Effects hair dye... They have a pretty amazing range of gorgeous colors.
For the last few weeks I have been struggling deeply. It’s taken a while to get insight on the mess and get it sort of defined.
There have been a number of thoughts running through my head, which have felt and sometimes sounded like multiple freight trains on multiple tracks....
1. I’ve repeatedly been on the verge of fear; fear of the horror movie I’m watching in my body. Specifically, the horror of the cancer metastasis. It started in my ovaries—in my pelvis, then it spread to my abdomen, then it spread up to my chest, then it spread to the lymph nodes under my right arm, then the lymph nodes under my left arm, and now, the lymph nodes in the base of the left side of my neck, and those nodes are getting pretty big.
If the cancer continues its vertical spread, it’s a hop, skip, and a very small jump to my brain. I don’t know how much you know about mets to the brain, but it can cause a very broad range of results. I don’t want to lose my mind and I don’t want to become a source of distress to myself or others.
I know God will keep His promise to be merciful to me, and I know Jesus will keep His promise to come for me, but the closer this stuff gets to my brain, the more aware I have to be; constantly remembering His promises and not allowing the fear to take hold. It’s exhausting, but if I don't do it, I drown.
2. I’ve been experiencing a lot of anger, grief, and frustration. Anger, frustration, and grief toward huge changes, toward myself for feeling misanthropic for a variety of reasons, and toward God for allowing this process to take so darn long. I’ve been feeling a lot of things too strongly to post anything rational or helpful or appropriate for sharing. That’s why I haven’t been posting much…
I have a private blog that only I read and it’s my cursing and swearing and ranting and raving blog. Don’t worry; I’m the only one who can access it. And yes, I would highly recommend having a private blog for doing cathartic writing. I find it really helpful to externalize my thoughts somewhere safe where no one can read them and where I can process stuff without dumping it all on some innocent bystander. This is not a pretty process and it’s not neat or tidy.
3. At the same time as all of that, I know that if I’m still here, He has a purpose for me, but I don’t know exactly what the heck that purpose is. Not having a strong sense of purpose is one of the most difficult places for me to be, so I’ve been bugging God constantly about it; begging, demanding, whining, for Him to show me what His purpose for me is, both in the big picture of the rest of my life here and for today. And when tomorrow comes: for today again, ad nauseum… Only instead of being nauseated by me, God has been teaching me bit by bit about this purpose thing and His love for me.
4. Along the lines of God’s steadfast love for me, He put someone in my life through a “chance encounter” who spoke Philippians 4:6-7 to me, and it’s been echoing in my head ever since:
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
I started thinking about that, and the fact that if I present my requests/burdens, to God, and leave them with Him instead of taking them back and freaking myself out, I won’t be anxious about anything. For some reason, this seems to be something that needs to happen many times per day for me…
Then He showed me Psalm 55:22:
"Cast your cares on the LORD
and he will sustain you;
he will never let the righteous fall."
Same theme, different wording: Present my requests/Cast my cares/Cry out to God and He will carry me. The issue is that I need retraining because I like to grip my burdens as tightly as I can with my puny little fingers instead of leaving them with the God of the Universe for Him to take care of for me… He offers over and over to carry my burdens, as in Matthew 11:28-30:
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
Isn’t that what we all really want, rest for our souls and a light burden??? Light burden seems oxymoronic, but then so do a lot of other spiritual truths that make perfect sense once I begin to experience them…
And then, just because God knows I have issues and need constant reminders, He showed me Psalm 107, which is awesome—I would strongly recommend reading the whole thing because it’s all about the depths of His love for us and how much He desires to save us from ourselves and from all of the things that distress us. This verse is repeated FOUR times in reference to His people:
"Then they cried to the LORD in their trouble,
and he delivered them from their distress."
Each time it is repeated, it’s followed by what He saved them from or what his answer to their cry was, you really should read the whole thing.
Then other night, I was looking up something else and “just happened” to read Psalm 57:2-3:
"I cry out to God Most High,
to God who fulfills his purpose for me.
He will send from heaven and save me;
he will put to shame him who tramples on me.
God will send out his steadfast love and his faithfulness!"
I re-read it last night for the ninth or tenth time and my slow self noticed that it’s God who fulfills His purpose for me, it is not my work oriented, production oriented self who fulfills my purpose for myself. He fulfills it—I don’t have to panic over discovering what it is.
He’s putting that steadfast love thing in my way a lot. There’s this song I used to hear somewhere that He’s been whispering across my mind over and over again. Here are the lyrics:
The steadfast love of the Lord never ceases
His mercies never come to an end,
They are new every morning
New every morning
Great is Your faithfulness, 0 Lord
Great is Your faithfulness.
So those are the thoughts that have been on my mind for the last few weeks. Those are the truths God has been lovingly showing me in gentle and obviously Him kinds of ways. I am still struggling, the process is still not pretty, and I often don’t know how people close to me are able to love me, but somehow God is bringing me/us through.
I still don’t know what my exact purpose is in terms of the specific kind of details I’m always wanting, but I am slowly learning that it’s not up to me anyway as long as I have an attitude of obedience toward Him. Thankfully my fits and freaking out along the way don’t discourage Him.
Thank you for all of your prayers, support, encouragement, and patience for/with me through this very messy process.
Two other things:
1. If you get this via email, you’re not getting the final, hopefully more refined/edited/added to version that hopefully results after it’s posted online and I mess with it for ten minutes or so—you’re just getting the initial rough version.
2. I was reading an email from another terminally ill person with cancer and I’m going to start copying his email signature:
Here are some pictures of my first rag quilt. It's called a rag quilt because of the raw edges on the front. This one is for my younger brother and his wife and their daughter who is due in November....
You can click on the pictures to see them bigger....
As for me, I'm doing okay.
On an emotional/cognitive level, I've been going through some stuff in the last week or two.
On a spiritual level, God hasn't left me or forsaken me and is reminding me to focus on Him and His promises. As long as I do that, I'm okay. If I start speculating about the future and focusing on the grief I've been feeling recently, and which I can't articulate yet, I'm a disaster, my relationships are a disaster, and life looks like a disaster.
On a relational level, I'm enjoying spending time with some of my siblings who've come to visit from far away places.
On a physical level, my stomach is still not right from the radiation, and needs to settle down... But yesterday I went on a forty minute walk in the woods. This was the first real walk I've been on since June 6 and it was awesome. I had enough energy to do the walk comfortably and my body wasn't hurting, it was amazing. The junk in my neck is growing and hurting so I need prayer for wisdom about that. I don't know if I should do something about it while it's small (radiation or surgery...) or try to ignore it because it's part of the process....
I'll post some pictures of some pendants I made at some point this week.
I meant to post this on Tuesday when I finished my last radiation treatment...
Radiation is done, the nine stickers the radiation therapists used to line me up on the table are gone, and I'm doing okay. The radiation took care of the larger part of the hip joint pain and the shooting pain down my leg, which is awesome. I still have some lingering pain that came back after being gone for a few days. The hypothesis is that as the radiation shrank the tumor which was covering the nerve (and pressing on it) the nerve was exposed to radiation and got inflamed. The radiation dosage wasn't strong enough to cause permanent nerve damage, so logically speaking and God willing, the inflammation will deflame itself over the next few weeks. My energy has been slightly better for the last two days, but it has a long way to go. I've been taking shorter naps (an hour or two instead of three to five hours), which is progress.
Thank you very much for all of your prayers for this process.
”No man should judge unless he asks himself in absolute honesty whether in a similar situation he might not have done the same.” Viktor Frankl, Man's Search for Meaning (p. 69)
I have never used it, and I hope I don't get to a point of needing to use it because so many medicines have had paradoxical effects on me. But I have done some research and found a plethora of reports like this, from real live human beings with terminal illnesses who are suffering beyond what most of us can even begin to comprehend.
“After my ileostomy and 3rd surgery a size 0 hung on me. My ileostomy was rapid transit so I wasn't keeping in any nutrients. My doc told me I had 2 choices...intravenous feedings, which would run a high risk of infection...or smoke marijuana. Of course I chose the easiest route. Too much of it makes me sick instead of feeling better. One little puff once or twice a day saved my life. I could get my food and water down and it eased my mind.”
“I was so dehydrated I had to go to the hospital twice. My Dr prescribed marinol for my nausea along with 3 or 4 other drugs, but I had a hard time keeping it down long enough to work. One hit of Pot and my nausea would disappear almost instantly. I was able to keep my other medications down, eat and drink enough to stay hydrated and gain weight. I don't know if I could have made it through chemo with out it.”
“...my brother who is dying from end stage liver disease finally ate after nearly dying from ascites once I located some for him. My parents thought he would die on the couch until they allowed him to go to the garage to do it.”
I can’t say cannabis works better than prescription drugs because, like I said, I haven’t used it. Honestly, if I could have used it last spring and it does everything I’ve read that it does, it would have eliminated the vast majority of the prescription drugs I was on, and which made my life hell—and which pharmaceutical companies were making loot from. One of the anti-nausea drugs was $300 per treatment (I had six treatment cycles), of which I had to pay $50. And that was for THREE (3) pills.
Can you imagine how much money pharmaceutical companies would lose if cannabis were legal in all states for medical use? I think those companies have a huge impact on the fact that it’s still illegal in so many states. That, and the fact that so many people aren’t willing to consider the facts about its therapeutic value. Maybe they will when they have a terminal illness.
Here is just one example of a prescription drug side effect description. I had to take this one last spring when I was on chemo and the side effects were agonizing. I actually refused to take it for my final treatment cycle; I flushed it down the toilet instead. I couldn’t put it in my body knowing what it was going to do to me physically and emotionally.
The following adverse reactions have been reported with DECADRON or other corticosteroids:
-Allergic reactions: Anaphylactoid reaction, anaphylaxis, angioedema.
-Cardiovascular: Bradycardia, cardiac arrest, cardiac arrhythmias, cardiac enlargement, circulatory collapse, congestive heart failure, fat embolism, hypertension, hypertrophic cardiomyopathy in premature infants, myocardial rupture following recent myocardial infarction (see WARNINGS, Cardio-renal), edema, pulmonary edema, syncope, tachycardia, thromboembolism, thrombophlebitis, vasculitis.
-Dermatologic: Acne, allergic dermatitis, dry scaly skin, ecchymoses and petechiae, erythema, impaired wound healing, increased sweating, rash, striae, suppression of reactions to skin tests, thin fragile skin, thinning scalp hair, urticaria.
-Endocrine: Decreased carbohydrate and glucose tolerance, development of cushingoid state, hyperglycemia, glycosuria, hirsutism, hypertrichosis, increased requirements for insulin or oral hypoglycemic agents in diabetes, manifestations of latent diabetes mellitus, menstrual irregularities, secondary adrenocortical and pituitary unresponsiveness (particularly in times of stress, as in trauma, surgery, or illness), suppression of growth in pediatric patients.
-Fluid and electrolyte disturbances: Congestive heart failure in susceptible patients, fluid retention, hypokalemic alkalosis, potassium loss, sodium retention.
-Gastrointestinal: Abdominal distention, elevation in serum liver enzyme levels (usually reversible upon discontinuation), hepatomegaly, increased appetite, nausea, pancreatitis, peptic ulcer with possible perforation and hemorrhage, perforation of the small and large intestine (particularly in patients with inflammatory bowel disease), ulcerative esophagitis.
-Metabolic: Negative nitrogen balance due to protein catabolism.
-Musculoskeletal: Aseptic necrosis of femoral and humeral heads, loss of muscle mass, muscle weakness, osteoporosis, pathologic fracture of long bones, steroid myopathy, tendon rupture, vertebral compression fractures.
-Neurological/Psychiatric: Convulsions, depression, emotional instability, euphoria, headache, increased intracranial pressure with papilledema (pseudotumor cerebri) usually following discontinuation of treatment, insomnia, mood swings, neuritis, neuropathy, paresthesia, personality changes, psychic disorders, vertigo.
-Ophthalmic: Exophthalmos, glaucoma, increased intraocular pressure, posterior subcapsular cataracts.
-Other: Abnormal fat deposits, decreased resistance to infection, hiccups, increased or decreased motility and number of spermatozoa, malaise, moon face, weight gain.
(From http://www.rxlist.com/decadron-drug.htm )
Sounds like a nightmare, doesn’t it?
Here is a LINK to an article on the side effects of marijuana. It's long and worth the read but the bottom line is that, comparatively speaking, the side effects are minimal.
And, a report from a physician:
“Doctors see all sorts of social injustices that are written on the human body, one person at a time. But this one —the rote denial of a palliative care drug like marijuana to people with serious illness —smacks of pure cruelty precisely because it is so easily remediable, precisely because it prioritizes service to a cold political agenda over the distressed lives and deaths of real human beings.
Washington bureaucrats —far removed from the troubled bedsides of sick and dying patients —are ignoring what patients and doctors and health care workers are telling them about real world suffering. The federal refusal to honor public referendums like California's voter-approved Medical Marijuana Initiative is bewildering. Its refusal to listen to doctors groups like the California Medical Association that support compassionate use of medical marijuana is chilling.
In a society that has witnessed extensive positive experiences with medicinal marijuana, as long as it is safe and not proven to be ineffective, why shouldn't seriously ill patients have access to it? Why should an old woman be made to die a horrible death for a hollow political symbol?”
(From http://www.safeaccessnow.org/article.php?id=4559 A site which is full of very interesting research-based information on many aspects of medicinal cannabis treatment for many illnesses. The beginning of this doctor's report was about a woman with ovarian cancer.)
I have asked several medical doctors about the medicinal use of marijuana. Their response is to be very careful to state the experiences of their patients without recommending it, because of the legality issues, I'm sure. The last doctor I asked said patients reported that marijuana helped with appetite enhancement, controlling nausea, pain control, and relaxation. To treat all of these with pharmaceuticals, you'd probably have to take four different meds and each one would probably have some massive list of potential side effects...
I know someone's probably thinking that patients are just using marijuana to get high, rather than for the physical benefits. My answer to that is to ask what is wrong with seriously ill patients experiencing a little bit of euphoria? How is that going to hurt them? Is it so wrong to allow them to have a break from suffering?
I guess the level of distress from pharmaceutical side effects isn't likely to be understood unless you've experienced them at least at some level.
And there is so much more I could say... But this is already very long.
Bottom line: For medical use, the risks seem very low and the benefits enormous.
If you don't think people such as the women who wrote the comments above should be able to use it, why not?
I would challenge you to think long and hard about your reason(s), and the reason for your reasons.
I would challenge you to examine yourself and see if your reasons are motivated by something in yourself that needs to be re-evaluated, such as fear, stigma, or lack of information.
I heard a story last night that I’ve been thinking about a lot.
It's similar to a lot of stories I hear and think about. Someone gets sick and dies very quickly, someone dies in their sleep, someone has a heart attack and dies in seconds...
A woman was diagnosed with acute leukemia, moved up North to be near her son, and died—all within the space of one week.
Have you ever had death envy? Bearing in mind that my definition of death is an instant transition from this life to Heaven, to Life, I’m envious.
Yes, I know that it’s nice for people to have time to prepare for the death of a loved one. Yes, I know sudden deaths are hard on the people who are left behind.
But as the person looking at dying, it sounds great to me. I mean ONE WEEK??? It’s been over a year and a half for me. I’ve known since the beginning that my cancer would be terminal. I know God showed that to me, I know that this process is being used in a lot of ways with a lot of people, I know that I’ve learned a lot and grown throughout the process, but knowing I'm terminally ill and trying to live in light of that is not easy. Having constant mental battles trying to keep my head straight and focused in the right direction, fighting to keep myself focused on the promises God has made me and not on speculating about how I'll "die," trying to understand which medical interventions are ones I should use, trying to understand which medical/physical issues to deal with and which to ignore (like the marble sized lump inside the base of my neck and one the same size under my left arm which have both been hurting this week), and a million other things make the dying quickly option seem very appealing.
My grandfather used to say we’re all terminal cases, and it’s true. But there are a lot of different ways to make that transition from life to Life. Some are more awful than I can think about, but some sure do seem like easier ways out...
Maybe this is a prayer request, for the grace to live well until Jesus comes for me. I know that God will guide the future as He has obviously guided the past, but sometimes the ambiguity gets to me.
I spent an amazing weekend in the mountains with my brother and my sister-in-law doing all kinds of fun things and just hanging out... We went off roading up and down gravel roads hanging on the edges of mountains, we walked a little (it was just a little, but still...) bit of the Appalachian Trail, hung out by mossy rocked mountain streams with waterfall after waterfall, hung out by rivers with tumbling rapids, watched fireworks from the roof of their truck, watched a drum circle, made little rock sculptures, had great conversations, took naps........
Here are a few pictures:
Then today, I came back to radiation.
The good news is that it has already dramatically reduced the pain in my hip, thank God. I was really, really excited Friday to be able to take a short walk up and down a steep hill with NO pain. Today I had a little bit of pain but not too much.
The other news is that the radiation is messing with my body in some unpleasant ways. I’ll spare you the details. I met with my Doctor today and he had some ideas for managing the side effects. So that’s good. The side effects will most likely get worse over this week before they hopefully get better over the weekend. Then, I’ll hopefully just have two radiation treatments next Monday and Tuesday...
And, to balance out my uber-excitement about being able to walk comfortably, the piece of junk in my neck has been hurting more for the last couple days. My plan is to ignore it as much as possible and hope the pain is temporary and stays fairly mild...
So, this is life; some really awesome stuff, some annoying stuff. Please pray that I would stay focused on the awesome stuff and that the annoying stuff wouldn’t become overwhelming... Please pray that I would remember that God loves us like this:
"But you, O Israel, my servant,
Jacob, whom I have chosen,
you descendants of Abraham my friend,
I took you from the ends of the earth,
from its farthest corners I called you.
I said, 'You are my servant';
I have chosen you and have not rejected you.
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
"All who rage against you
will surely be ashamed and disgraced;
those who oppose you
will be as nothing and perish.
Though you search for your enemies,
you will not find them.
Those who wage war against you
will be as nothing at all.
For I am the LORD, your God,
who takes hold of your right hand
and says to you, Do not fear;
I will help you.
Do not be afraid...
O little Israel,
for I myself will help you," declares the LORD,
your Redeemer, the Holy One of Israel.