It’s nearing the end of May and the words are stirring in me again, so that must mean I need to sit down and write. Besides, if I wait to long, my letters turn into books because I have too much to say!
So, I started back at work May 2, and have almost a month under my belt. It’s been going good, although I have had to hit the ground running, as is just the nature of social work. People have needs, and they sure don’t put them on hold to allow you some breathing room. But after a few weeks of running to play ‘catch up’, I think I have my teeth sunk in. At least I have a “to do” list, so discerning that amongst a caseload of 60+ developmentally disabled teenagers/young adults is an accomplishment! Emotionally I’m starting to wind down. I was worried about the transition back to work, but I found so many smiling faces that it really wasn’t so bad. I found myself being much more positive and extroverted than I anticipated I’d be, so it is kind of neat to see the change in me. But that positive energy is sort of wearing off as I find the trench I’m supposed to be taking cover from (this reminds me of the analogy of war again- when an injured buddy gets shipped off the front lines to get patched up, and then once he returns, gun in hand, his buddies greet him and the reunion is full of camaraderie, but then the bullets start flying, and you have to jump back in that trench again). So, work is work.
Jared went for his follow-up with Dr. Sales finally. He recovered from the surgery in a couple of days, and is doing fine now (he celebrated his 9th birthday this month- yikes!). The growth turned out to be just that- an extra growth of skin (benign fibroepithelial papilloma to be exact). It wasn’t a wart, although it looked sort of like one. Weird. At least he doesn’t have this pea sized thing hanging out his belly button anymore! You know, going through this rather mild surgery with Jared was hard, even though it had been softened by my own experiences with surgery this past year. It gave me a glimpse into what parents with really sick children go through. I can’t even imagine the difficulty in trying to balance- to keep an income, and health insurance, while also being there for your hospitalized child. It certainly isn’t easy. And it’s so sad when kids have to go through difficult physical trials like that. But I think one advantage they have is their childhood faith. Because they don’t fully comprehend the loss of death, they are free to just be who they are. Sick kids often turn out to be major inspirations for us adults. But for some reason, our culture seems to have more compassion and empathy for sick children than it does it’s sick adults. And being a young adult with cancer, and children who still depend on me, I’m not convinced this selective compassion is right. I mean, if our heart is for children, then I would say that it is probably much harder for a child to lose a parent to cancer than a child to go through cancer treatment. And as a Mother, that has been the most profound pain and fear in facing my own cancer. It isn’t the fear of death itself- I know where I’m going. It’s the fear of who I’m leaving behind, and how that loss would work itself out in their lives. I know God would provide a way, but the emotional issues can be so profound for children that it forever shapes who they become. And that is what is the most painful and frightening for me when I face death. I suppose those with grandchildren feel similarly about their grandchildren, but even that is ‘once removed’ in the sense that I don’t think the loss of a grandparent is nearly as profound to a child as the loss of a parent, if the parent is the primary caregiver. I mean, not that my grandparents didn’t provide a significant influence in my life- they certainly did, and I am grateful to God for that. But, for example, Al never really grew up with grandparents, and had he had, it may have enriched his life, but the fact that he didn’t doesn’t seem to have negatively impacted his life.
So, along with Jared, I’ve been to the see the doctor this month too. I saw Dr. Patel earlier this week. My bone scan came back clean, as I thought it would, but it sure wasn’t much easier going through it the second time. That anxiety is intense! The immense and sporadic bone pain I’ve been having Dr. Patel attributes to the chemo. I knew it wasn’t cancer because it never hurts in the same spot. But, I also knew something was causing it. He says that at about 4-6 months post-Taxol the nerves that were damaged start the rebuilding process and the intermittent pain is caused from that, and shockingly, can last about to 12 months. I wish I would have known that beforehand. So I start treatment back up on June 7th, and will be getting Taxol on day 4 of the cycle. I hope that it doesn’t irreparably damage the nerves as they begin repairing themselves, because that can happen too. I’ll definitely be praying that no long term effects of this chemo come upon me, and I ask you join me in prayer on this. Dr. Patel also says that the dose of Adriamycin is enough that I will lose all my hair again. I anticipated that, but then grew complacent, hoping that it wouldn’t be a total loss. Since it’s now confirmed, all I could do was tell him, “well, it is summer, and at least I won’t have to worry about shaving”! I doubt in two treatments I’ll lose my brows and lashes though, as those were the last to come out previously, and it wasn’t until about 5 cycles that they did. That’s the worst part- that and the puffiness and moodiness caused by the steroids given with the chemo. I’m battling with trying to get some of the weight I gained off as it is, so I’m really disappointed about that part of it- that I’ll probably gain more weight again. I did talk Dr. Patel into doing the Herceptin treatments. Most of the women with IBC in the online support group get Herceptin for their Her-2 status, regardless if Stage IIIb or IV, so I felt pretty strongly that I should be getting that too. It is one of the treatments that Dr. B recommended when we went to Texas. But, Dr. Patel wanted to preserve that treatment as a first-line defense if and when I had a recurrence. Almost as if he’s expecting one. But, that’s not my style of game planning. I am not that passive about my cancer- I would much rather prevent than respond. Besides, it’s not like Herceptin would be the only line of defense if I had a recurrence. While it is true that if I had a recurrence after Herceptin, my body would have developed resistance and Herceptin would no longer be an effective treatment, there certainly are other treatments that are effective and that I haven’t had. So, Dr. Patel said weekly Herceptin for a year. I guess at this point I’m not dancing about being “in remission” or declared ‘No Evidence of Disease’, because I maintain a cautious anticipation given the reality of this disease, but I sure am excited to be almost officially done with the hard stuff! Herceptin has no felt side effects. So, as I approach the remaining two chemotherapy cycles, and look forward to a year of weekly Herceptin treatments, I can look back over the last 12 months, as my one year anniversary of diagnosis came and went this past week, and think “Wow, look at where I’m at”!
That thought came sharply into focus through a friend I made on the internet. Rob and his wife, Rhonda, and their 3 daughters live in Sacramento, and Rob drove down to meet me back in November, right before my surgery. Well, the thing that brought us together was Third Day, and as I shared last letter, Third Day’s concert was in Fresno on the 17th. I had the awesome opportunity to meet Rob again, and his wife and two daughters for the first time. I also got passes to go backstage to a ‘meet and greet’ with the guys. So, Al, Amanda (who just turned 12 this past week), and I met all the Third Day band members, and Warren Barfield, who is touring as the opening act for Third Day. On top of that, I somehow ended up onstage with Third Day, as Mac calls people up onstage to sing “Come Together” with the band every concert. You know how introverted I am, and so standing in front of hundreds or maybe thousands of fans filling the Selland Arena was scary enough, and then the experience of being on stage- not being able to hear because of the echo in the sound system, and being partially deaf anyway from tobyMac’s performance, and then hearing my voice come out of the speakers as it traveled to the far corners of this vast arena, and all I could do was stand there and eek out a few words. I about died of embarrassment. But Rob encourages me that even my goofed ‘performance’ was a testimony to those who know what I have been through this past year. And God quietly reminded me that my shame and embarrassment are HIS GLORY, so I needed to put that aside and let Him shine. It isn’t about me, it’s about Him. So as I spiritually moved forward in boldness, putting aside ‘humility’ and my profound sense of loss, it caused me to review my photos, pre-chemo, mid-chemo, post chemo, and even now. And yes, that pre and post as of today is not the same, but the transformation and all that was attached to it brought God’s glory sharply into focus for me. So once again, Third Day has served as a significant sign post in my relationship with Jesus. Hmmmmm……
I’ve been thinking spiritually a lot lately. During the time of the last letter I was more focused on the day, and all the upcoming activities we had planned. Now that these are behind us, my focus has become more precise again. And there’s been a lot on my mind. I heard a sermon a few weeks ago about the Book of Job, and going through trials. The Pastor suggested that in order to combat the depression/oppression that can occur as the result of a difficult trial, it’s always good to look at others and their trials, because there are always those among us who are going through harder trials. I thought that is so true, and I have always used that method of focus to get out of my own self-pity, even as I was reminded, when laying with total fear and anxiety in the bone scanner a year ago, by the thoughts of what paralyzed people go through. But the thought also occurred to me that for most cases, I am the “other” person. Most people look at me, and see me as the poster child for the “glad I don’t have it that bad” poster. And I’m still searching for the reasons why, although I know that may never become as clear as I’d like it to.
Another thing I’ve been thinking about for a few weeks now was triggered by a home visit with a family of a girl on my caseload. The family had a brief scare when they thought that their daughter may have had a cancerous tumor in her pelvic area. It turned out fine, but the Mother was sharing with me that as Christians it really caused them to question their faith. So much so, she said, that her husband vowed that if it turned out to be cancer, he would turn his back on God, because his expectation is that those who faithfully follow God shouldn’t be afflicted with cancer. I left that home visit and cried all the way home. The pain of that confession hit me deeply in my heart, and it made me look at my own faith. My first instinct was to guard against her lack of faith by seeing myself as somehow superior- as if that family felt the way they felt because they lacked REAL faith, and that REAL faith was something I had more than them. But, God’s gentle voice reminded me that the faith I have is His- He is the Author and Perfector of it. And the only reason I haven’t ‘turned my back’ on God is because HE has kept me in His bosom. It surely hasn’t been my spiritual strength at all, because quite honestly, I have doubted His purpose, I have been angry, and fearful, and I have felt totally defeated at moments. But you know, my faith has grown and deepened, and I don’t think it’s anything I have done, but rather that God’s got His hands wrapped around my heart. And my tears of pain over the spiritual precariousness of this family turned into tears of humility as I saw myself face down before God. And my “why me?” turned from being a whiny and self-absorbed attempt to escape my trial, into a reverent and blessed testimony of God’s Sovereignty and Grace. Yes indeed, why me? Wow, God is so awesome.
Another issue that has come forth from the side again is this whole idea of healing and faith, and modern medical science. My first thought is that with all the advancing technology, it seems that our goals are not just focused on immediate cure/treatment of disease, but to live forever. Anti-aging products and research is a huge industry these days. And the idea of dying with dignity and being respected for the wisdom you’ve gained over the course of a long life, well lived, seems to be taking back seat to this era of consumerism, individualism, and vanity. Old age doesn’t seem to be seen in the same way it once was, or maybe it’s just me getting older and having a different vantage point? All I know is it seems like everyone is trying to escape aging, and ultimately death. If there was a ‘miracle pill’ that could stop the aging process so you could continue on as you are exactly at this point in time, how many people would take it? I am guessing the majority. I mean, if your spouse were to take it, you’d want to too. If your kids wanted to take it, you’d want to too. Nobody (who isn’t depressed) really wants to consider death. And our medical ethic is certainly reflecting this. Is this truly our goal- to live forever in these bodies? Within this paradigm of attitudes about death is the ‘word of faith’ people. And I’ve been struggling with their beliefs, which seem to be thrown back at me from all directions this past week or so. It hasn’t really been coming from the people at church, but more from the greater collection of the Body. We settled into a new church home a couple of months ago, and are really blessed, as that was a difficult process. Anyway, these ‘word of faith’ people seem to have the belief that it is never God’s will for people to be sick, and that if we have enough faith, God will heal all those who ask. I don’t even take this seriously- it doesn’t cause me to question my faith. But it does cause me to be angry, because all I can do is look with sadness at the many families who serve God, and who have lost loved ones to disease. And all I see is blame- if only I had enough faith, God would heal me. Well, you know, maybe God will heal me, maybe not. My cancer could still be in microscopic proportions in my body. And as a brother reminded me, although Jesus raised Lazurus from the dead at that moment, Lazurus still eventually died, as did all the people that Jesus healed when His feet touched the soil of this earth. If I don’t die of cancer, I still am going to die. So these beliefs serve as a little distraction, and one worth mentioning. Christian people with sickness hear this sort of teaching/belief all the time, and I haven’t really met one who felt that it served a good purpose. It’s so much easier to deny death than to face it, and it seems to me the way of God is never the ‘easy’ way, so I don’t know what that really implies about people’s faith? Maybe you can think on it, and share with me what you come up with………
~Love in Jesus
Here’s me and Amanda with Mac Powell, the singer of Third Day, and me on stage with the band (I’m not sharing this with a heart of pride, because honestly, it’s a little embarrassing and I’d rather not share it. I’m sharing in humility and reverence for God that He has brought me this far!):