Thoughts on a Challenging Journey

A journal composed during the day-to-day trials of a prolonged battle with colon cancer, updating friends and family on treatment, attitudes, thoughts, and feelings.

Friday, January 5, 2007

Treatment Du Jour

Well, today I'm a pincusion again. It's been a long time since I have had to say that. One thing that's been nice about using only supplements is that it doesn't involve needles. Of course, it also wasn't showing us the results we wanted, either, so I suppose there's a trade-off in there somewhere. I'm on day two of my stay at Oasis of Hope Hospital in scenic Tijauana, Mexico, and today treatments began.Treatments haven't been terrible though, certainly not in the way I have come to expect with anything called a treatment. I also had a CT scan this morning and a physical examination with a very kind doctor who calls me "Dear" when he's speaking to me. In all, it's been a busy and, at times, difficult day.

My preparation for the CT started at bedtime last night with a 3-cup pitcher of contrast mixed in orange juice (really good, fresh-sqeezed oj). It was just slighlty bitter. I was surprised to have it that early, but they assured me that would give it plenty of time to get where it needed to go. Surprisingly, the contrast was nothing like the chalky, foamy contrast used for all my previous CT scans, and fortunately, the rest of the experience was nothing like my previous CT's either. Those of you who have had the unfortunate experience of accompanying me to one of those tests is aware that I usually spend the remainder of the day in bed, and that I am bloated and nauseous and miserable for at least 4-6 after. This CT was a much kinder variety.

Like I said, I started the contrast last night, and then they brought me some more early this morning, around 8 or so. Actually, in an American hospital, that would be mid-morning, since they bring you breakfast at 7. So I guess that wasn't too bad. And the nice thing is that I could drink the contrast sitting in the recliner in my room, rather than a waiting room. A few minutes into my drink, a nurse came and put in an IV line for the CT. He didn't have much to work with in my veins, and the first attempt hit a nerve (literally!), shooting pain throughout my hand and wrist. His second try resulted in a line we could use. Then he told me they would come for me in 45 minutes.

I passed my time reading, and before long they came to get me for the scan. I was led to a room with the scanner in it and helped onto the narrow table that slides into the scanner. Though I had to take off my jacket, I was in my own clothes, including drawstring pants, and I did not have to undress and put on a gown. I was there for maybe ten minutes total, during which time they injected an IVcontrast and had me drink one last cup of the OJ contrast. It was fast and painless, and the contrast did not make me violently ill like all the other times. I did have a bit of trouble with that last cup of contrast coming back up when I stood up there at the end. I could tell waiting for the elevator up one floor to my room that the juice had been too much in my otherwise empty stomach, and when I arrived in my room I ran straight to the toilet and got rid of that last cup. I felt pretty rotten, but only for a few minutes. Then I had to go find some breakfast so I could start my supplements for the day.

After my breakfast was the physical exam performed by the doctor who did my history yesterday. I have no clue what his name is, though I asked him to say it repeatedly. He was very nice and apparently found everything where it belonged because he didn't have too much to say other than to explain how my treatments would be.

My next treatment was the ozone therapy, where they took out a pint or so of blood, oxygenated it somehow, then treated it with UV light, then put it back in. It lasted only about 30 minutes and was very relaxing. I am scheduled to do that again in the morning.

After I had lunch they came and accessed my port so they could use it for the rest of my treatments. I had a really hard time when they accessed it, so bad that I again got physically ill. I guess it reminded me of when I used to have to take home the fanny pack and have chemo at home all weekend. Some of you knew how traumatic that was, and some of you probably don't because I tried very hard not to let it bother me. Anyway, today when I smelled the alcohol swab and the plastic patch that goes over it, I lost my lunch (made it to the toilet again, though). I don't know why certain smells have to do that to me. I felt much better after. Maybe in this pleasant atmosphere, I can override my previously negative attitudes toward certain smells.

Since having the port accessed I have been having the remaining treatments, and those have been uneventful. I am on an oxygen catheter (as they call it) to inhale pure oxygen during the treatments because apparently several of the treatments I'm on use oxygen to increase the effectiveness. Apparently that's something cancer cells don't handle well. I have met several people in the last 2 days that are in various stages of their own cancer battles, and many are hearing great news about the progress of their treamtments. It gives me hope that we will beat this too. It's looking good so far. It this is as hard as the treatments get, I know I can take it easily. The hardest thing today has been facing the unknown, and now that I know what at the treatments are, I can plan my days a little more easily. Now, it is getting late and we are going to watch a movie that we brought. I may update again tomorrow, if there is anything new to tell you. It will probably be a lot like today. Like Kristi said to me in a chat we had, "sleep, take supplements, eat, sleep, take some more supplements..." that's about the extent of it for the next few days!

Take care ouf yourselves and keep in touch!

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Thursday, January 4, 2007

A Whole New World

Hi everyone! I know many of you are anxious to hear from us, and we are anxious to communicate with you too, but until just a little while ago, my computer was not set up to use the wireless connection, so I had to wait for them to help me with that. I was so excited to have them hand back my computer (they took it so they could set it up for me). I happily found an outlet (there are few in the room) and turned it on, started Internet Explorer and... what do you know. It's all in Spanish. Google, my blog page login screen, this page, everything, with the exception of what I'm typing. I'm either going to get that fixed or going to learn Spanish in two weeks.

I will deal with that later. I know many of you are anxious to know how it's going and what's going on.

Mostly, the flight down here was uneventful. We arrived at our hotel late and got up early for our ride. I was in a big hurry to get here and get started. Our driver picked us up at the hotel at 8:30, and within a half hour we were at the border, applying for our passes (we have not had time to get our proper passports). That went off with no complications, and soon we were in Tijuana. WOW! The way some people are forced to live in this world is unbelieveable! I have heard about and seen pictures of places like this, but to experience it first hand was a shock. Everything is very close together, buildings on buildings, and there seems to be a huge amount of undeveloped land, and it's all dirt. Where there's dirt, there's trash. Everywhere. Though I did see some trash in bags, so I know they do have trash pick-up. These people seem to have some kind of fixation with fences. There are fences everywhere, connecting everything. And where there are fences, there is graffiti. It's very colorful and well done, but such a far cry from the clean, cared-for appearance of our cities. It was quite something to see.

We came eventually into a nicer part of town, and just after we spotted the Pacific Ocean, we spotted the hospital. It is squashed right up next to two other buildings, on one side a newly-built high-rise white condo, and some old dingy building on the other. It sits right on a busy city corner, but does have a little bit of nicely-kept grounds. It looks exactly like what's in the picture, only I think we both expected large spaces and parking lots or something like we have back home. These buildings are truly on top of one another. Our driver was able to park literally at the front door, and he led us in to where our patient representative was waiting. Her name was Ruth and she was warm and friendly immediately, giving me a hug as she said hello.

As our driver went for our bags, Ruth took us up to our room, which was a little disappointing. I'm not sure why really, because everthing is exceptionally clean (and I've noticed that there are people here who clean all day long) and it contains a comfortable bed and a hospital bed too in case it is necessary. There is no decoration though, so it's rather stark, and our very large window looks out onto the construction site of the new condos going up out back. It almost looks like we should have a balcony, but I think it's just the top of another part of the building and our window doesn't open. Ruth gave us the preliminary info and some papers to fill out, and said she would be back.

After she left, Mike and I had a few minutes where we were really at a loss. I think it was different than we expected, and we had just seen so many unpleasant things to remind us that we were in a very disadvantaged area. We just looked at each other for a little while, like neither of us knew what to say. Then, somehow, we realized that we did not set out on this trip alone. Everything has fallen into place to allow us to come, and we have really felt the hand of God nudging us in this direction. The place comes highly recommended by many people, and the admission/registration process was handled so professionally. We spent a few moments in prayer and decided to go through with the treatment as planned. Moments later, Ruth was back for our papers.

Since that moment of trepidation there at the beginning, we are very comfortable with out choice. These people do not waste time (there's something the American system can learn!). Someone came to draw blood samples, then Ruth gave us a tour. Since she knew I was fasting for the blood tests, she then took us to the empty dining room and ordered our breakfast, which was FANTASTIC! They brought us this platter of fresh fruit that contained 6 or 7 varieties, bowls of hot cereal, two kinds of cold cereal, whole grain toast, and then two fried eggs each served with guacamole. Odd combination, I know. But, for those of you following my diet to the crumbs, I ate a whole piece of toast with most of (I know, Mom, I can't believe it either) a fried egg and some guacamole. Would have had more but I ran out of toast. I also had a whole bowl of hot oatmeal with strawberries and honey, and some other fresh fruit on the side. The food was great and these people are amazingly hospitable. Mike ate some kind of flaked cereal with strawberries and get this-SOY milk. Apparently they don't serve any dairy products here at all. Mike did not realize that his three meals a day would be the same as mine. He will be on my diet, and I am feeling NO sympathy at all! He might come back a bit slimmer.

After breakfast I met with a doctor, and I gave him a verbal history. He told me about my treatment plan which, for now, consists of a chemo-free regimine. I will have a baseline CT tomorrow morning, along with chest x-rays. I am also scheduled for multiple intraveinous treatments tomorrow and most of the following days, which I will tell you about when I can.

We have had lunch, which was mostly a vegetarian affair, and I have a pill case loaded with time-labeled supplements to take. Lunch came with a big handful that did not go down well, so tomorrow I will have to remember to actually take the pills WITH food. Maybe that will help. I will get to practice, I guess, with my dinner supplement selection. I'd better finish getting these down soon before they make me eat again. It is nice not to have to prepare my meals at all. That part will be a blessing. Mike is snoozing on the bed. He is going to be WAY bored. He'll deal. We aren't here for him. Oh, and there is a beautiful chapel where they have devotions each morning, an activity room where they have classes, a psychologist, patient lounges, and laundry service (for a charge). Now that we've warmed up to the place, I think we will really like it here. We have met people in various stages of disease from all over the world, and even one guy who was healed here ten years ago and comes back every year to volunteer around the hospital.

I guess that's enough for now. I feel better after communicating with you all, so I hope you feel better hearing about it. I will tell you tomorrow how the treatments go. Right now I'm going to rest some more, and then I'm going to have them fix my computer so I can read it. I've tried everything I can think of. Love you all, and talk to you soon!

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Thursday, December 21, 2006

Ahhh, Christmas break. After the first several days of my "leave of absence", I now have company every day. The kids are now on break until January 3. Unfortunately, with company of this sort, there is a certain required level of activity that goes along with it. I am in the process of trying to retrain my kids to see me as more of a couch decoration than maid right now. That's not really going terribly well. We are unfortunately at the mercy of their whims. RIght now Lauren is washing pennies. Hundreds of them . I have no idea why. She's been counting her allowance, which she's saved. I think she likes having money so much that she's looking aroung the house to see where she can find more. She's better stay out of my money jar!

We are planning on having a good time getting ready for Christmas, but for some reason both of the kids are testy with each other and they are bickering a great deal. Lauren would like very much to mother her brother, and regardless of the quality of her advice (she's pretty good at it, really) Logan is not about to be told what to do by his little sister. You can probably imagine how that goes. I'd like to be able to make cookies with the kids, but I'm really not up to it. I get uncomfortable standing very long, and there's also the problem of making cookies (and therefore, cookie dough) that I will want to eat and have trouble staying out of. I feel bad shortchanging the kids, but they don't seem to be suffering too badly on account of it. Christmas is really difficult on a no-sugar diet. Most of what I want is very very bad for me. I have to admit to indulging a little bit now and then recently!

Everything seems to be falling into place for the Mexico trip. We have what we need for our temporary passes into the country, and plan to get passports before the next time. We have an anonymous donor from church helping us find the couple thousand we still needed for the $24,500 we have to pay upon arrival at the clinic, so we should be all set there. It covers everything except hotel stay on the way down and back, which shouldn't be much. Then the only thing we will still need to come up with is between $1,000-3000 for at-home treatments in between. We won't know how much exactly until we get there. It changes with each patient depending on what he or she needs.

We have our plane tickets. We fly out of Springfield at 5:25 p.m. on Jan. 3, and will return Jan. 16 around 6:30 p.m. I'm so glad we have an airport here and that we don't have to drive to St. Louis or KC to catch a plane. We have several offers from some family members with frequent flyer miles that they will take care of some future flights, so we shouldn't need too much more money for this any time soon. I'm also going to see if the insurance companies will pay anything on the hospital stay. That might help us immensely.

Guess that's all that's going on here for now. I'm off to finish the last of my Christmas shopping. Hope everyone reading this has a wonderful Christmas!

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Thursday, December 14, 2006

Diet ups and downs but progress on the Mexico front

It has been a few days since I posted, but time has flown by and I haven't been on my computer in days. I'm wrapping up things at work; tomorrow is my last day. The kids from school are bringing in some really kind gifts, including one candle that was lit at a special Christ candle in Jerusalem. It is said that anyone who burn the candle will be blessed by the special flame. It was a very special gift. In addition to gifts and goodbyes, I'm also trying to prepare my substitute for the first few weeks that I will be gone. She's doing a super job, but I feel like I have worked very hard this week.

At the beginning of the week I was pleased to have eaten well all weekend, and I celebrated putting on a pound and 1/2. Then for the next few days, I haven't felt well (my stomach), so I haven't done as well getting all my foods in and I feel like I'm backsliding. I haven't completed my food diary in the last few days, and I think that's part of my problem. I'm not sure what I've eaten and what I haven't, so I'm just trying to get in as much as I can. Tomorrow I will certainly get my menu plan done and all my foods consumed. It's hard to do that when you don't feel good. I know that being at home will be good, since at school I don't have time to eat all the food I bring. Still need to buy a scale so I can weigh here.

I'v had some treatments this week with my naturopathic doctor this week that involve something called frequency therapy. It destroys cancer cells with cycles of sound waves. I sit comfortably in a chair and hold what looks like jump rope handles in my fingertips. The sound waves then travel through my nervous system to target the cancer cells which break at a different point than healthy cells. Sounds hokey, but I've head of good results with the machine, so I have nothing to lose. I think I will research and try to find out more.

Yesterday I received detailed information about our treatments in Mexico. I sent the information to some people, but I didn't figure everyone wanted it. If you didn't get it and would like it, let me know. It is very complete, and I will be filling out the forms and sending it back to them. Then we will be almost ready to go. Right now we are working out some passport issues.

Time to go relax on the couch. Maybe I can get the kids to bed early so I can crash early too. Talk to you all soon!

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Sunday, December 10, 2006

A New Idea Takes Hold

Welcome to any of you who decided to come and take a look. Though I've never done this type of journaling before, I'm sure that if so many other people out there can do this, so can I. What started yesterday as an offhanded comment, "...maybe I'll just start a blog, and then anyone who wants to know what is going on with me can check in and read about it..." , was actually pretty well received by several friends and family members, and I was encouraged to give "blogging" a try. Though I don't know what kinds of things I will be writing about, I plan to use this blog to keep anyone who is interested up-to-date on the diet effort and weight gain results (none yet, need a scale!), doctor visits, test results, Mexico trip plans, recent health decisions, how I'm feeling, and those types of things, along with how the family is holding up under all this.

It is my understanding that readers can post comments and questions, so I welcome people's feedback. This might turn out to be kind of fun!

So I guess I need some information to start things off. It's Sunday, and I taught Sunday school as usual, but I did not stay for church today since I couldn't get anyone else up and around with me this morning. Also, I needed to get back home so I could eat. I'm not kidding, this eating business is SO HARD! You would think that consuming 2000 calories a day would not be a big deal, but when most of what I'm eating is supposed to be vegetables and lean proteins, it requires a bunch of food. Turns out that a serving (1/2 cup) of broccoli only contains about 20 calories. Same for most of the other veggies. It sure doesn't add up very quickly! Last night at 8:00 I was forcing down a piece of whole-grain toast with a tablespoon of almond butter (similar to peanut butter, which I'm not allowed right now) to push my day's count over the 2000 mark. I made it, but I was stuffed! I'm determined to try to eat more food, earlier, today to avoid the late-evening cramming.

I begin each day with a notebook and a pen, plotting out what to eat and when so I can be sure I get it all. Then as the day goes on I check things off my list. In 3 days it's getting a little easier to eat all the food, so my stomach may be stretching back out a little. It must have really shunk this fall. Food still doesn't interest me all that much, but maybe that will come. I try not to worry about what I will eat tomorrow. I'm taking this one day at a time. Someday this will be easy.

Some of you may not know yet, but after next Friday, I plan to take a leave-of-absence from work. My WONDERFUL school district is trying to cover my absence with donated sick days so that I don't have to lose pay, and both the students and faculty have been very supportive of my decision. My doctors feel like I am just expending way too much energy, so I need to mostly stay home and rest, allowing my immune system to do its job. I've finally agreed to comply.

On the third of January Mike and I will fly to San Diego, where we will drive to Tiajuana, Mexico and be admitted for a 12-day stay in one of the alternative cancer clinics there. We have chosen Oasis of Hope (www.oasisofhope.com), which looks perfect for our needs. Family members will keep the kids while we are gone, and we will go again 2 more times for 6 days each. We have high expectations for great results! We should be returning on January 16. I plan to keep in touch by email while I'm gone, and if this blog is not a total flop, I will try to keep it updated with news, test results, and what they are doing to me down there. But someone's going to have to let me know they've been here, so it isn't all a wasted effort! Well, that's probably enough for one day. I'll probably have more to say by tomorrow! So, until then, blessings to you all!

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