Back when I believed I might be going through chemo, or surgery, or both, the idea of dealing much with our big horses looked unlikely. But, after watching the donkeys over the years at the shows, I was quite taken with the idea of regular interactions with an equine of smaller dimensions. Those donkeys I'd observed were extremely well-trained, clingy and cuddly. When we got Remy, I had hopes he'd be like that. He had obviously been handled, trained and fed well. But, I found out immediately that mules (and hinnys even more so) are very suspicious creatures. You have to earn their trust. You have to prove to them that your plans for them are wise and you have their best interest in mind.
Two familiar scriptures say this about Our Father's dealings with His children:
1. God works all things together for the good of those who love Him, who are called according to His purpose. Romans 8:28
2."For I know the plans I have for you," declares the LORD, "plans to prosper you, not to harm you, plans to give you hope and a future. Jeremiah 29:11
Those are promises you can hang your hat on! Was I sure back then that His plan was to heal me? Spare me? No. I knew that He might show me how to physically exit this world. I also knew that I was not ready. I remembered Corrie Ten Boom's fear of having her father leave her by dying. He told her (at the train station, remember?) that she didn't have to be ready yet. When it was time, she would be given the ticket to board; until then, He was holding her ticket for her so she didn't have to worry about it.
The first decisions I made, in early June, reflect a certain optimism, but it was almost immersed in deliberating over dying. I went to a thrift shop and purchased a long-sleeved tunic made of synthetic material. Since I almost always buy cotton and I very rarely wear long-sleeves, it meant to me that I was at least entertaining the possibility I'd be alive in the middle of winter when I might want to wear it; it was totally inappropriate for mid-June. And, I began to think about what I wanted to do to celebrate my 60th birthday, still five months hince. I remember thinking about the relevance of so many pursuits: continuing to work when I could retire, continuing to rearrange our cluttered living areas, continuing to communicate/comment/blog... I was overwhelmed by the immensity of the unknown.
Those who have known me long, know that I like to be informed before making any decision. I love to research things. The internet makes this so easy to do. And so have I done, and continue to do, deep digging into the subject of cancer.
Actually, a better analogy is scaling a mountain shrouded in mist; I still can't see the top, but I'm up high enough to have quite a view.
I've plateaued several times.
Spiritually, I realized Jesus knew well what He had to go through in advance. And He proceeded in spite of that knowledge to carry out the tasks Father gave Him. So, I try to not think so much of dying or how it will be done, but rather about living and doing what He gives me to do.
Here are some monthly highlights of the past year:
JUNE 2012
I was very reluctant to take on an oncologist. I didn't see the point since I was unlikely to follow any advice given by one. But I went ahead and made an appointment with the one recommended by the surgeon I'd seen. Kevin went with me. We prayed as we parked at the office park that the oncologist recommended to me by the surgeon would be ideal for me. God provided! He was/is an excellent listener. He nods his head like a dashboard dog. I like that sort of close attention to what I am saying. I had a LOT to say. I had a list with me of questions. A few of them were: will physical activity (sweating, lifting and straining) be a problem; can you use a cpap during surgery (for apnea); why was radiation recommended after surgery; how long would I have before having to make a decision about the surgery... He did prescribe an aromatase inhibitor (hormone inhibitor). He said that the one with the fewest side-effects was Exemestane. I remember asking him how the body can function without estrogen and progesterone since that is what Aromatase inhibitors are supposed to do, shut down the body's ability to convert nutrients into hormones. Heed what he said; I think he answered truthfully. Doctors don't know how the body keeps on functioning in spite of the inhibition of hormones!
At that first visit, I was thrilled that taking AI was all I had to do for a few months (he estimated three) until it was determined whether taking that was having an affect on the tumor. Then, if it was, I would continue to take it until the tumor shrank, then have the tumor removed, then have radiation to 'be sure there are clear margins'. I was NOT thinking that I would agree to all that, but I was glad to undertake the 'wait and see if the Exemestane works' route. I decided in my mind that if I did have surgery, it wouldn't be until December; I didn't tell the doctor that, but based on what he'd said, that seemed a realistic time frame. I bombarded the oncologist with what I had learned about nutrition. He seemed politely interested, but he didn't pretend to know much about what I was saying. He did answer several questions I asked about hygiene and exercise. He said exercise was good. He said sweating was OK. I was also surprised to find out that the blood work they did in their office was processed immediately. I was able to actually take the printed results away with me. I've learned since that that isn't the case in most offices. I'd been sent to one of the best in town. The nurses there were very kind and easy to talk to. The one that drew the blood did a superb job (I have veins that are tricky to hit and that tend to collapse before the amount necessary is drawn).
I filled the prescription for Exemestane and began taking it the next day. Within only two days there were some quite obvious physical indications that my hormones were being squelched. In the next weeks I began to be concerned about what was happening to my body. My hair stopped growing, my nails began to thin and break and bend when I pressed into anything. I felt weak and exhausted at the end of the day. My ability to lift things decreased. My joints ached. I began having hot flashes. My concentration was scattered. My skin looked thinner. My gums were tender. I felt a little nauseus in the morning...I took that medication for four months. Until the last week of that time, I believed that what I was doing to my body was necessary, but at that point I began to see that the side-effects of this (new) drug were really very similar to chemo. It was supposedly mainly 'targeting' cancer cells, but as I read articles on it I realized that really wasn't true. This list of side effects finally convinced me I was at least partially negating my concentrated effort to balance my digestion and strengthen my immune system by taking it. The following link does give detailed information on the side effects. When someone says 'possible side-effects' is that sort of like 'rain is likely in some areas?' Because, some of the percentages for the side effects are more than one in five! Another list I came upon (but can't find again) showed a rare side-effect was 'trigger finger'. Just about the time I stopped taking the medication, I developed trigger thumb! I had never even heard of that before and had no idea why it happened until I came upon it listed among the side-effects for aromatase inhibitors. My thumb has never fully recovered. The rest of my body still has residual effects from just four months on the stuff and I was expected to stay on it for FIVE YEARS! My oncologist did tell me that the effects of Exemestane on the body were irreversible! All I can hope to do is work around those effects.
http://www.rxlist.com/aromasin-side-effects-drug-center.htm
http://www.hopkinsmedicine.org/healthlibrary/conditions/breast_health/lymphedema_following_a_mastectomy_85,P00148/
But, I am getting ahead of the story. I had asked the oncologist to schedule me for a bone density test and a sonogram of my mid-section where I had been experiencing so much pain. He also wanted the other breast checked and I asked him to include an xray of my left leg that had been hurting in an odd way for months.
One thing that I found interesting is that scheduling a sonogram to check a breast is far harder than scheduling a mammogram. The reason I was given is that only a couple of imaging places in town even do that sort of sonogram. That gave me pause. So, I actually had the abdominal sonogram done along with the xray of my leg and the bone density test first since those could all be scheduled for an earlier date than the breast sonogram. I was the one that had requested all three of these and I was pleased that the technicians doing the xray and the bone density at least gave me cautious feedback that they didn't see any problem. The tech doing the abdominal sonogram was not friendly at all. She was short with me and did not want me to ask her what she was seeing. She told me that my doctor would have to give me that information. At the time I didn't really 'get' why the doctor had to do this since I was the one wanting the information in the first place. But, I waited impatiently the week or so necessary to schedule the appointment with the oncologist so that I could have him tell me that all of the tests came back showing no problems. My bone density was great. I had expected that. I have been doing heavy lifting most of my life and I have ingested milk in huge quantities (too huge, I'm admitting now) from birth into my forties. The xray of my leg showed nothing at all. The abdominal sonogram, ditto.
I finally had the sonogram done on my other breast. There was no sign of a tumor in the other breast. I actually liked the Women's Imaging Center; the waiting room was interesting. I felt a rapport with the others waiting there. Sonograms are sort of pleasant: the dark room, the gentle moist contact, the rhythm of the scanner, the cool breath of AC coming through the vents... I was given partial results while I was there. I felt like it was understood that I was there because I chose to be and that I was the one the tests were intended for. The place where I had the other imaging done was different: busier, brighter, pushier, nosier. And I hadn't gotten the same feedback there about the tests.
So,I was pleased (albeit it later) nothing was showing up in the xray, my bone density was great and they saw nothing (no mass or odd shadows) in my midsection. That in particular gave me hope that I didn't have a big tumor already in or on my stomach, esophagus, lungs or other major organs. At the time that test was done, I had so much adipose tissue (FAT) in those areas, I worried about what might be growing in there. That gave me the courage to set sail on the course that I have continued to follow. If I didn't have any large obvious masses in my abdominal core (where they would be life-threatening) and the tumor in my breast was not growing rapidly, I had time to undertake this whole cancer journey on my own terms rather than under advisement of medical professionals who stood to make mucho money off me.
Let us pause here to consider this, because I think it is extremely important to realize that cancer patients are primary sustainers of current medical practices. If I had gone the route expected of me, here is what I would have paid into the 'system' (or, I should say what my insurance would have paid into it since I do have excellent coverage through my employer: UT):
1. initial consultation with my general practitioner
2. diagnostic mammogram
3. initial consultation with surgeon
4. in-office mammogram/and or sonogram with surgeon
5. biopsy
6. lab work that determines type of cancer (based on biopsy)
7. initial consultation with oncologist, blood-work done in office
8. mammogram of other breast; MRIs probably, too
9. bone density test (since going on hormone inhibitors can weaken bone density)
10. prescription for aromatase inhibitor. You stay on this for 5 years. It costs $500 a month.
11. monthly visits to oncologist. bloodwork done each visit.
12. when oncologist is satisfied that AI is working or not, back to Surgeon's office.
13. another mammogram and probably another biopsy before surgery
14. lumpectomy or mastectomy
15. breast reconstruction
16. follow-up imaging (probably MRI or CTs)
15. regular visits to oncologist afterward with bloodwork each time (at about 6-12 week intervals)
16. more imaging (in a couple of years) of the other breast
17. find tumor in other breast, biopsy, surgery on that breast...(the type of breast cancer I have does often show up in the other breast - lobular)
18. 5 years or so down the road bloodwork other imaging would show metastisis to some other area of body
19. more MRIs, CTs, biopsies... I really am underestimating the amount of tests they would perform. At this point they would recommend chemo. When that doesn't work,
20. Another type of chemo
21. frequent visits to test effects of chemo. more imaging.
I don't do numbers, but I do know that the only biopsy I had done was about $6000. $4000 of that was the lab fees. That was an outpatient procedure that took about 15 minutes. What I have read indicates that it is not uncommon for a single cancer patient to rack up over a million dollars in treatment costs. How much of the list above do I think is necessary? The only thing on the list that I've welcomed is the bloodwork. I don't know what that costs my insurance, but for me it is a $35 co-pay. That seems well-worth it to me since it gives me an idea of how well my body is functioning. Sonograms are a little useful and they don't harm the body at all. They aren't 'definitive' but that's OK with me. I think they cost about $300 as compared to $1200 for a mammogram. Don't quote me on those figures, but I'm fairly sure there is a significant difference in the price on the two. CTscans are actually multiple xrays and those are much more expensive. And then MRIs are even more! All along the way a cancer patient is having this sort of imaging done. All along the way a cancer patient is being told they have to schedule an appointment with their 'doctor' to get the results of these tests. The doctors get paid each time you go in to see them. I have become convinced that the reason they treat you like royalty at the outset is because they see you as an asset being added to their portfolio: a treasure to be carefully handled. Ponder this please before letting them place you in their care; the more you agree to have them do, the harder it will be to say 'no' to them later.
I listened to the experience of a woman who underwent a mastectomy and it proves my point. Her every whim was catered to before the surgery, but afterward, she was on her own. The hospital and nurses did not send her home confident or equipped for the dismal task before her. She described graphically how insensitive they were to her condition and the logistics of managing after-care. She actually was so incensed it motivated her to make a contraption for women to wear after surgery because there was nothing appropriate provided or available at the time in spite of the thousands of these surgeries done routinely.
Now, the following are excerpts taken from my notes during the next few months:
July 2012
Noted in my log: steady weight loss, sleeping through the night, less urgency to urinate, barely aware of dreams, tire easily, sleeping on the bus, overwhelmed by all that needs to be done, thoughts about what a mess I'd be leaving behind if I died or got so ill I couldn't function...
Although I had begun to look on the internet for specific information regarding my cancer, and I had come upon two websites in particular that I found extremely helpful:
foodforbreastcancer.com
and
cancertutor.com
I eliminated many other websites for the following reasons:
1. they were pushing/selling some product that was 'a proprietary blend' of all sorts of ingredients you recognized as cancer-fighting (tumeric, green tea, pectin, grapeseed extract...) i.e. they were after money.
2. they wanted you to 'join' their program (so they would have you on their mailing list) i.e. monthly/yearly payments
3. they wanted you to order books, tapes, dvds, etc. i.e. online sales techniques were obvious
4. they had some ingredient from some distant part of the planet that could only be obtained through them...
5. they didn't show enough saavy about cancer (they were not making distinctions between organic and conventional)
6. they wanted you to come stay at their clinic or facility for treatment (way too expensive and disruptive for our budget).
Whereas, both Food for Breast Cancer and Cancer Tutor are informational only. They have compiled vast resources of carefully researched articles, protocols, product links, and you didn't need to join/sign up/ or pay to use them.
At some point, when I was feeling the pain and aggravation in my breast and starting to wonder if I should go ahead and have the surgery, I found a book on my coffee table in the livingroom. I have no idea who gave it to me. Someone had though and I had brought it home and placed it there. It had been sitting there several weeks, I think when the LORD brought it to my attention. The book was the first to actually blatantly describe what I had been surmising, the inefficiency of modern medicine to individualize treatment, and the refusal of conventional medicine to acknowledge alternative treatments that are safer and natural (not concentrated, synthesized and genetically altered in a lab).
Suzanne Somers book Knockout
That book referred me to the
Burzynski story and film. Seeing that film solidified my belief that conventional, BigPharma medicine is designed for profits, not for curing cancer.
August 2012
Noted: Kevin was having trouble with my frustration. Some clashes. We each began to have some time on our own due to his schedule. He was working early and late. I started riding the bus several times a week. I found the bus restful. I made a few friends through sharing what I was going through.
Referral to biochemist, history: early habits, begin to see patterns established as child
Changing view of eating. Not craving food at all. Able to be around things that used to be hard to resist and it really isn't. Scents enjoyable without need to imbibe.
September 2012
Noted: Food log, sent stuff to biochemist for evaluation, sonogram, bloodwork, beginning to question aromatase medication, losing strength, looking flabby, Breast cancer explanations getting more complex. Appreciating the CPap machine, getting better sleep. Pleased I can lift (not easily) 50 pound feed bags and the big water bottles at work to put them on the dispenser.
October 2012
Noted: got off medication, digestion producing more gas, attended a workshop called 'Cancer Killers' put on by a chiropractor. Began spinal adjustments when I realized that constrictions in my neck were preventing signal from my brain reaching areas that affected body functions. Understood cortisol release. Aching and pain in neck and shoulder more frequent and variable, struggling to get into a routine for treatments with chiropractor. Organized house and began cleaning, had company, fall fest...
November 2012
Noted: having problems getting to sleep, moon was full, bumps in the night, Kevin's late nights (til 10:45) riding the bus means time to think, pray, read, early voting, not telling everyone now about cancer, rather wanting to have this outlet (blog) and a way to refer people so they can get at the same information Maximized Living.com webinars. Breast has been complaining, armpit, too. We celebrated my 60th birthday at the park where I grew up. We had a costume party. It was a blast!
Dynamics of dying. I'm not sure where to place this paragraph. I spent those first weeks thinking about dying: trying to wrap my mind around the possibility. It is sobering contemplating how one will die.There were quite a few pains in my body then and I was afraid of that increasing. I was also afraid of what an unchecked tumor might do: how it would look, feel, express itself...Fear of the tumor itself was repeatedly aroused by pain from that site. The tumor definitely moved around; it changed shape; it chewed and pinched at surrounding tissue. For several months, even after making the firm decision not to have it removed then, there were times when I wondered if I was giving in to fear of the operation. But, each time, I would work though the whole scenerio in my mind and come away (much like we do when we doubt our faith) with stronger resolve.
To me, that means live life fully, not 'fight cancer' with grisly weapons. I kept telling concerned friends and family, "I'm not going to die of a tumor in my breast; leaving it there has many advantages." It had been the surgeon who first suggested the tumor would show the effectiveness of any treatment tried. So, once I began my own regime, I saw that the tumor was serving a purpose. It was a constant reminder that I must be vigilant; that I couldn't slack off physically, mentally or spiritually. My motto has become: pursue life, not death.
Expectations. Because the surgeon had planted the idea in our minds that the tumor might actually disappear (shrink until it couldn't even be found; thus the reason for putting the itty bitty 'marker' in there so they could find where it had been and exhume it), I did hope this would happen to vindicate our unconventional tactics. For the sake of my loved ones who feared for me, it would have been nice to tell them it was shrinking, or was now undetectable to us. People at church prayed the LORD would just heal me and I could go about rejoicing and wowing others with what He had done! I thought that would indeed make a fine testimony (and forgot for a while that the LORD had shown me decades earlier He doesn't follow scripts we write for ourselves). Rather, He proves His faithfulness and goodness in surprising ways so others will recognize them as His ways, not our own. A healing would have pleased plenty of believers, but it wouldn't have been as useful to others in the long run. The tumor didn't shrink. It changed in shape and texture, but we knew within four more months (eight from setting out on our self-determined course of action) that it was actually larger. That caused me to change how I answered the most frequently asked question, "how are you doing? What does your Dr. say?"I had a hard time explaining why I wasn't going as often to the oncologist as they expected me to (or as he expected me to). About five months into the course I had set out upon, the main 'news' I had was that I was steadily losing weight because of dramatic changes in my diet. I primarily talked about those changes with people: what I was and wasn't eating. As soon as I told them I was not eating sugar, or soy, or dairy, or gluten...and that I was avoiding all animal products unless I knew their source and that they were grass-fed, a long discussion of the reasons for these restrictions ensued. For a time, that was enough to wear out my listeners. They appeared to be concerned about my weight loss (thinking I expect I was losing the weight due to the cancer). In fact, one of the side effects of hormone inhibitors is weight gain, not loss. So, I assured them that my weight loss was healthy. I wasn't losing the weight quickly. One to two pounds a week on average was all I lost. Eventually, I got all the excess fat off that was burdening my organs, straining my heart, hindering my breathing, restricting my movement...I was pleased to see the weight going down (since what I read indicated that weight gain was a bad sign). I began to be able to feel contours and joints that had been robed in fat. Anxiety about masses in my abdomen or mid-section abated with the weight-loss. My blood pressure dropped for the first time in a decade. To me these changes were confirmation I was going in the right direction, but I knew even if I wasn't, God is in control and He will steer the way.
Everything seems to be more significant when you realize your time may be short. Certain hymns at church speak to me personally, my desire to help others in crisis is intensifying, unusual happenings perk my attention, news broadcasts come through to me as transparently biased, boldness is coming back to me after decades of trying to squelch it, and everyday I revel in God's showers of blessings upon us.
No comments:
Post a Comment