At the moment, I need to be careful (actually more careful that I am inclined to be), so that I am sure that I am not making things worse than they need to be. Things like rice, canned peaches, bananas, most cheeses, and white toast are the things I eat early in the process, before trying to expand out later in the cycle. Living alone, it is easy to make something simple for myself, and I tend to start craving things later in the week, so I find myself eating out more often, once I feel able to eat more normally (still avoiding that insoluable fiber.)
I saw my oncologist this morning before my treatment began. The doctor and nurse practitioner, who saw me last time, had talked in between treatments. The nurse communicated how bad I did during the second treatment. That was important, because I tend to downplay how bad things are, when they aren't fresh in my mind. I likely would have focused on how much better, relatively speaking, the first few days went. To be honest, after the first few days, my other symptoms (GI-related and overall fatigue and feeling crummy) were as bad as they had been, but lasted longer. The doctor seemed very concerned, and said that obviously things couldn't continue indefinitely this way much longer.
I saw my oncologist this morning before my treatment began. The doctor and nurse practitioner, who saw me last time, had talked in between treatments. The nurse communicated how bad I did during the second treatment. That was important, because I tend to downplay how bad things are, when they aren't fresh in my mind. I likely would have focused on how much better, relatively speaking, the first few days went. To be honest, after the first few days, my other symptoms (GI-related and overall fatigue and feeling crummy) were as bad as they had been, but lasted longer. The doctor seemed very concerned, and said that obviously things couldn't continue indefinitely this way much longer.
He said that the plan was to do this harder cycle for 6 months if I tolerated it well and 3 months if I wasn't. I don't remember that plan, I only heard the indefintely on some sort of chemo, and I guess I didn't pay attention to the details of the timeline. He said that now that we were at the 2 month mark, we should do a CT scan and see what going on, then make a decision.
I think he's leaning toward taking that new information and either doing one more treatment or stopping the irinotecan (the drug he thinks is causing most of the symptoms) at that time. Then, I would continue with the 5-FU and Avastin. The 5-FU is the pump I carry around for these two days. It certainly had something to do with my nausea, since it always stops when I get the pump off, but last treatment we seemed to find things that worked.
I have a medical procedure in mid-April, and when I asked him about my concerns related to a side effect that anti-biotics tend to have on me, coupling with the irinotecan, he said that he is expecting that if our plan works, then I won't be on that drug in April. I don't love my, aptly named 5-FU pump, but I do think the irinotecan is the reason that this round of treatments have been so much worse that the ones I didn't like and stopped early back in 2011.
I've written a lot. I'm actually feeling kind of tired and maybe a little nauseated, so I think I am going to stop writing and post this as it is (I was right it was already too long, but as you'll see I didn't stop!) There's more to say, but it's already too long. I'll post again after the pump comes off. Pray for my mom as she flies up here from Disney on Thursday. The family has been there. Unfortunately, she was exposed to strep while there. She hasn't felt sick and probably would have by now. Also, while strep is no fun, it is easily treated. We're taking a calculated risk, assuming that she'll either be symptomatic by tomorrow, or she won't get it at all. There are other possible scenarios, so please pray that she won't come down with it, and I won't be exposed.
Her trips are a huge help to me. She does a lot of work around the apartment, but I've lived alone as a slob for at least a decade, so that isn't what I need or get most from her (though I do appreciate it when the apartment is clean.) She gives me emotional and spiritual support, just by being here and through our conversations.
I want to say thank you to my school colleagues and the parents of my students for donating money and gift cards to help cover some of her travel costs, and to pay for groceries while she is here. Both groups showed amazing generosity to me, and which astounds me each time, even though my fellow teachers and the parents in our area have always showered me with their support, love and generosity. This time isn't really any different, I feel as loved and cared for as I always have, and I have as much need of it as I always have.
I hope that I have been more honest about my needs than in the past. I don't really have any major financial needs, though the possibility of that in the coming months is certainly real. My needs are more psychological and spiritual. In the past, I wasn't willing to show how overwhelmed I was feeling. The last couple of years, God has changed me in such dramatic ways, but it is probably hard to see it on the outside. They were changes in my heart that had been a long time coming, and primary among them was the freedom to admit that I needed help. I don't feel a sense of embarassment, or at least I don't care if it is embarrassing for me to admit that I need help, that I am feeling overwhelmed and anxious.
The process of seeking help means being more open on this blog and making clear that Mom coming to be here for each treatment was something that I need to survive. You all have poured out your love and support to me in so many ways. I mentioned a few of them in an earlier post, but knowing that so many people are praying for me has been a major reason I've held it together as well as I have these last weeks. My school, for one, hiring a full-time co-teacher to be there when I'm out and when I'm there has made it possible for me both to seamlessly take off the time I need to heal, and be at school sooner than I would normal be able. There are so many other individuals and groups who have been giving me their love, support and prayers that I am blown away.
So much for me ending the blog post...I finally reached out two weeks ago to the Living Well Cancer Care Center in Geneva. I'd know about them since 2011, but had never accessed any of their completely free services to cancer patients and their families. I have started seeing a counselor there.
I began having a somatic response prior to treatments, where I feel sick in the days leading up to treatment, back in 2011. I knew that was not a good thing and it contributed to my decision to end treatment two rounds early, but within the 10-12 treatments window. I didn't seek out any other help back in 2011. I wasn't able to admit that there were things going on that I couldn't control. As I said, that is something that God has changed in my heart these last couple of years.
A few weeks ago, I felt myself getting overwhelmed and having moments that seemed similar to a panic attack. It only happened a few times, and often when I was going to bed, and my mind wandered to treatments, indefinite chemotherapy, concerns about work and missing my family. I knew that I need help and first reached out to Mom, but I also knew that I needed to talk to someone with experience helping people deal with treatment.
I tried emailing Living Well, and didn't hear anything back. I know that in the past I would have let it drop, but instead before the last treatment, while Mark was waiting for me outside, I called and scheduled an appointment. The first two sessions haven't been life changing, but I know it was a step in the right direction.
I need help. I'm not embarrassed to say it, though it is hard for me to think of concrete ways you all can help me. I know that so many of you want to help. You really are making a difference just posting on Facebook, writing me an email or a card, and most of all by praying. I've lived alone for a long time, and I have a hard time relying on other people for the things I can do myself.
However, I can't encourage myself; I need your help. I can't be a friend to myself; I need your help. I don't admit to knowing exactly how prayer works, but I know that praying on my own isn't to be compared to all of us praying together; I need your help. I can't stop writing, I blame the steroids for making me ramble on and on; I need your help!!!! :)
I think my attitude has been like the Pharisee and scribes, because I thought that if I was sick or needed help that it was something that I had to work out between myself and God. I didn't want to be in a church as the person who was in need. I wanted to be the one contributing, the one God was using. However, that isn't how it works.
I think my attitude has been like the Pharisee and scribes, because I thought that if I was sick or needed help that it was something that I had to work out between myself and God. I didn't want to be in a church as the person who was in need. I wanted to be the one contributing, the one God was using. However, that isn't how it works.
I spent a decade digging myself a deeper and deeper hole until I couldn't get out on my own. I finally surrendered and God healed me miraculously, and changed my heart, slowly at first, to be more open to being honest about how broken I am inside. It doesn't mean that I think I'm worthless or incapable of functioning on my own, but that I know that trying to do that only leads to things getting worse. When I admit my need, that is when God can start filling me with his strength.
Even a bigger struggle for me is that He often uses people as His way of ministering to those needs. It is hard for me, even now, to admit how desperate my need is. I want to soften it, but I desperately need support. It isn't about food or money, which I know makes it hard on your end to come up with things to do.
It's about encouragement in many different forms, as described above. It's about when you see me acting like I can take care of it all, but you caution me to be careful, because you see I am overextending myself, while you nonetheless make it possible for me to work in a diminished capacity, because you know I need that distraction. It's about praying for me that I will have the strength to confront my weaknesses, and to reach out for help when I need it. Thank you all for doing those things in your own way, as the Lord leads (even if you can't feel Him leading you, I believe He works it all together for good.)
Luke 5:27-32
After this he went out and saw a tax collector named Levi, sitting at the tax booth. And he said to him, “Follow me.” And leaving everything, he rose and followed him.
And Levi made him a great feast in his house, and there was a large company of tax collectors and others reclining at table with them. And the Pharisees and their scribes grumbled at his disciples, saying, “Why do you eat and drink with tax collectors and sinners?” And Jesus answered them, “Those who are well have no need of a physician, but those who are sick. I have not come to call the righteous but sinners to repentance.”
And Levi made him a great feast in his house, and there was a large company of tax collectors and others reclining at table with them. And the Pharisees and their scribes grumbled at his disciples, saying, “Why do you eat and drink with tax collectors and sinners?” And Jesus answered them, “Those who are well have no need of a physician, but those who are sick. I have not come to call the righteous but sinners to repentance.”
It's easy to see ourselves as the healthy ones. This is something that has plagued me for almost my whole life. I saw myself as healthy, and everything that contradicted that, rather than leading me to confession and repentance, led me to denial and hiding parts of my life, because they threatened the my identity as someone who was good and loved God. It was a small thing at first, but over decades it became a bigger and bigger part of my life, until it had all but crowded out God.
I didn't like it, and I wanted to change, but I wanted to do it without anyone else's help or knowledge of the true state of my heart and life. God rescued me from that, graciously, and now I am willing to admit that I am sick, not just with cancer or chemo side effects, and that I need the Lord to do a work in my life on a daily basis.
I had thought that admitting I needed help would mean that I wouldn't be as loved by God and people. The first was ridiculous, since He already knew how sick I was, and the second has been disproven by all of you, who have not abandoned me when I admitted that I wasn't a strong person who could handle chemo all on my own. There's a power to being honest with yourself and others that I have misunderstood to my detriment.
Thank you for reading all of that! If you made it through that book, you have already shown your concern and care for me. Actually, even if you skipped it, you were probably just showing that you are a intelligent person who doesn't need to read my ramblings! Either way, I know that you are here because you care about me and want to help. Thank you for being there to help me in this time of trial. It means a lot to me.
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