My Shriveled Hands and Feet

So it’s been almost a month now since I last wrote. I’d tell you it’s because I wanted to give you a reading break, but that’d be a lie. The truth is, I’ve been too tired, and haven’t spent much time on my computer lately. I resumed treatment about two weeks ago, on June 7th. I went in, had my Cytoxan (chemo), saline (fluids), Kytril (anti-nausea), and Decadron (steroid). This was the first treatment I’ve had where I was totally alone, having to drive myself there, and back to work afterwards. Al was out of town on a business trip. So I got through that, and returned back to work with the Adriamycin pump attached. I got through half the day at work the next day, and then had to go home. When I go through chemo I make a conscience effort to drink more water than I usually do (about 3 liters a day), and trying to maneuver the chemo pump in the bathroom at work was not my idea of a worthwhile challenge. Besides, the nausea began creeping up on me. Al came home that evening, and brought my brother, Jesse, with him for a visit. I was glad Al was home, because I was scheduled for the Taxol on Thursday, and I knew I couldn’t drive myself, as they dose me up with so much Benadryl along with it, that I’m in the twilight zone for quite a while.

But by Thursday, the Adriamycin had crept up on me and I was wretchedly sick. If someone could say they can feel like a color, my color that day was definitely green- and not the bright and welcoming green, but that dull and minty green. So we headed to the cancer center, and I went in fully convinced I was going to beg them not to administer the Taxol to me. My body was telling me that it had enough. It’s sort of like when you go swimming for too long and your hands and feet start to shrivel up, I guess. I had really thought that this treatment wouldn’t be as hard, as I didn’t have the cumulative effect of so many cycles of chemotherapy under my belt. I mean, I haven’t had treatment since last October. But, it actually seemed worse this time. Maybe it was just my growing comfort with the way I felt without the chemo? Or maybe once your hands learn how to shrivel up when waterlogged, they’re quicker to respond the next time? So, wondering if my refusal to have the Taxol was somehow a sign of my weakness and failure, I asked them not to give it to me. Susanna, the Nurse Practitioner, comes to the treatment room and says, “so what’s the problem”? I know she didn’t mean anything by it, but I really wanted to tell her- “you come sit in this chair and take all these drugs, and come back and see me in three days, and then you can tell me what the problem is”! Anyway, Susanna told me I didn’t have to have the Taxol that day, and could wait until I felt better. There’s room for variability in treatment this time, I think because I’ve already finished my neoadjuvant treatment, and am just finishing up with these remaining cycles for good measure. So I decided to forego the Adriamycin, and only have the remaining two cycles of Taxol. I’m scheduled for 6/29 and 7/6 for those last treatments (not the best way to spend the 4th of July weekend). And then I will be possibly starting the Herceptin. After having been the one to so strongly advocate for that, even to the point of finally getting Dr. Patel to concede, I am reconsidering, as I would have to get the Herceptin treatments weekly for 12 months. And, that also would mean I have to leave my port in that long, and thus continue on the blood thinning medication that long too. I really just want to get on with my life.

It’s a shame that I’ll be losing all my hair again from this single treatment of Adriamycin. Some people have said, “well, maybe it won’t come out”, or “cross your fingers that it doesn’t fall out”. I know they say it with goodwill, but you can’t wish away the inevitable. There’s no ‘maybe it won’t’ hope when you get Adriamycin at standard doses. Everyone loses their hair after just one dose. And it usually starts happening about 2 weeks after the treatment. I’m already starting to feel the cactus prickly sensations in my hair follicles- by next weekend my hair will be gone. That’s one thing that has been difficult for me- going through my cancer and treatment so publicly, here on these pages, at work, with my clients from work, at church. Cancer, because of the treatment, is a difficult thing to hide. But it is this very public nature that God has used as a testimony to Him.

That’s one thing that has changed in me for the better- my faith is stronger, and I am more confident in it. Before I was diagnosed I was always questioning myself, who I am, my choices. I think a big part of that is a product of my upbringing, but also of my studies in psychology. When I started out in college, as a young girl of 16 years, I wanted to be a private practice marriage and family therapist. The closer I got to reaching that goal, the less glamorous it seemed to me. For a variety of reasons, I didn’t end up going that way, but that innate gift remains in me, and the secular studies have also stayed with me. For a long time I viewed my role as a parent, my children, my marriage, through the lenses of psychological theories. And I cognitively process things through a labyrinth of psychodynamics. When we had problems in the family, my first instinct was to seek psychotherapy. After having been severely disillusioned by that industry, I have spent the last couple of years waffling in this neurotic guilt, knowing the answers to our family issues are found in prayer and in God’s Word, but not yet seeing the immediate power of that. Since my cancer diagnosis I have seen that my confidence, my ability to discern between the voices of my fleshly self and that of the Holy Spirit, has grown exponentially. It was never that I didn’t trust God, but more that I didn’t trust God IN ME. And it has been through the testing and refining of my faith over the last year that I have really been able to see it for what it is- the only thing in my life that has eternal value. I’m not questioning myself as much these days. I’m not worrying if I am emotionally processing my cancer in the right way. I’m not worrying about how my parenting style might be damaging my children emotionally. I have taken off those psychoanalytical lenses, and am seeing everything through spiritual lenses with clarity and confidence. And I am discovering the freedom and power in that.

Another change I’ve noticed just recently was brought on by the chemo. My smiling self that walked the halls at work and said “hi” to everyone who passed by went somewhere after this last cycle of chemotherapy. I don’t know why or where, but I just know that ‘she’ went somewhere. I walk the halls now, and have to perform mental gymnastics in my head just to talk myself into lifting my head to acknowledge someone passing by. I know a part of that is the physical exhaustion I’ve been feeling, and coming down from the steroid high. But I think there’s more to it than that- pain and loss. I came home from work after having had treatment, Al being out of town, and I spent the evening crying. Even writing about it provokes tears. It is just so, so hard going through this. I’ve always been very sensitive, and hiding myself has never been something I’m very good at. I was reminded of the oceanic qualities of this cancer journey, and as I go into treatment again, I can feel the struggles as my head bobs up and down out of the water, just trying to catch a breath.

My caseload at work, as well as three others, was transferred to another supervisor a couple of weeks ago. My previous supervisor, a faithful Christian woman, said to me in the copy room the other day that she had to remember to pray continuously for me, because I had seemed to be doing so good and have been demonstrating such strength, that she hadn’t really thought of praying for me. I can’t blame her for that- I do the same thing. There’s so many people to pray for, prayer almost becomes like triage. It reminds me of that powerful scene in Pearl Harbor, after the bombs have been dropped and the hospital is filling up with the wounded. The nurses are in a state of shock and panic, and the lead actress, one of the nurses, was commanded to go out and mark with her red lipstick on the foreheads of the wounded, allowing only those who had a chance of survival to come in for treatment. Everyone needs prayer, and these days, doesn’t it seem like we almost have to prioritize the wounded? I am so glad that God isn’t commanded into action by our prayers alone. I believe that even if there was not one single person praying for me, He could still heal me. But I also know that prayer is necessary, important, and powerful. And I hope that those whom God has laid my burden upon continue to pray for me. Al and I are certainly thankful for our pastor, who has been faithful to lay hands and pray with me several times in the past few months. Pastor Ken has been a great source of encouragement, and that is in itself, without doubt, an answer to prayer.

Another neat testimony of prayer came out my struggles this past month. I had asked some people to specifically pray for me regarding a three day fast (water only). Fasting is something I’ve been struggling with for about a year now, as the Lord began calling me to fast then. I think the spiritual struggle has more to do with my idolatry of food than anything else. And, I’ve been walking with the Lord about nine years now, so I guess in some areas maturity has come slow. So, a few weeks ago the Lord again spoke to me about fasting, and devoting that time to pray for specific people. Being that I had chemotherapy scheduled for the following week, by medical standards, fasting would be the last thing I should be doing. By homeopathic wisdom, cleansing the body through fasting is exactly what I should be doing. And by spiritual standards, fasting isn’t about me, or my body, but about my relationship with Christ. Well, I went two whole days of my three day fast. That’s the longest fast I’ve ever been able to endure (except for when I was sick from chemo). The real testimony is that the week prior to my fast, my blood doctor had increased my blood thinning medication, as my clotting factor was too low, putting me at risk for blood clots. She also had told me in passing (along with a bunch of other dieting tips) that not eating while I was taking the medication could decrease my blood clotting factor, meaning my blood would not clot fast enough. The result of that could also be fatal. The target INR (which is a numeric measure of clotting factor) is 2-3 for a medically managed patient. Mine was a 1.5, which is why she increased the medication. Well, because she had told me that not eating would increase my INR, and I knew I was going to be fasting, I didn’t adjust the medication. I continued taking it as before. Two weeks later I went back for the test, and my INR is a “perfect” 2.8. In the 8 months I’ve been on this medication, this is the first time my INR has fallen exactly where it’s supposed to be. So my doc calls and tells me to maintain that previous medication regimen. I told her that I never made the adjustment because I fasted, and knew my INR would be too high if I took more of the medication. I got a royal lecture about diet, and how I can’t play around when taking “her medication” because the results could be fatal, blah, blah, blah. I simply told her that my fast had nothing to do with medicine, or my body, but was a spiritual thing. That really didn’t satisfy her- she was still rather upset about it. But I hung up and had a deep conviction in my heart that God brought my INR exactly where it was supposed to be because I was obedient in fasting, and that whether this doctor knew it or not, God just gave testimony of Himself through me! Once in a while we are blessed to be able to catch a glimpse into the far reaching effects of our faithfulness.

So, everyone’s managing me being in treatment just like before- it’s just another day, and what’s the big deal? The kids are already anticipating some exciting July 4th celebration, and I’m trying to explain to them that I have treatment right before, and right after, and chances are the bone pain is going to be bad enough to put me in a bed for at least two days. My hope is that someday the reality of all of this will sink in to them, and as young adults they will truly appreciate and respect what I am going through now. Justin and Jared are both in summer school. Justin’s already behind in credits. You don’t get credit for a class you get an “F” in. But, he was able to pull up his GPA last semester to a 2.0. He’s hoping to play football again next year, but we’ll see if that works out. He and Brittany are still a “couple”, so we’ve been doing a lot of talking about relationships, as they’ve been seeing each other for several months now. Justin turns 15 today. The kids and I spent last evening watching a videotape of Justin’s first birthday. Amazing. Jared’s at below grade level in reading/vocabulary, so he was recommended for summer school too. Amanda’s already complaining about how bored she is. I’m trying to get her motivated to start earning money for that 8th grade trip she wants to take to Italy. She’ll be spending the next year and a half selling candy bars, babysitting, and doing odd jobs to earn the money to go. Al and I are planning a family vacation for December 2005. We want to take the kids on a cruise through the Western Caribbean. We enjoyed the countries we visited on our cruise so much that we want to go back. And by that time, Justin will be 16.5, Amanda 13.5, and Jared 10.5. It might be the last opportunity we have to take this kind of vacation all together. It seems odd to be planning a vacation for 18 months from now, when just 12 months ago, I was hesitating even planning six months ahead. But even still, I am cautious in placing too many expectations. Al’s doing well. He left again today for an out-of-town meeting. We celebrated Father’s Day and Justin’s birthday yesterday, and all ate breakfast together at Micky D’s this morning, as it is on the way to the airport. Al travels a lot for his job. That is hard on all of us, but I thank God for the job he has, and for the strength of our marriage and unity in Spirit that enables him to continue traveling as he does. Al just started his fourth class at University of Phoenix, and he’s doing very well so far. But it is demanding, and I know it is an added stress. All I can do is encourage him to rely on the strength of our Lord, as I am doing.

So my head’s bobbing up and down as I wade in the swells of an unkind sea. One minute I think how blessed I am that the Lord’s glory can manifest itself through me and His gift of faith in my trial. The next minute I’m thinking, “if cancer is a gift, then where do I exchange it?” I shared several months ago that I am a lot like the Apostle Peter. I wasn’t kidding. So, thanks for putting up with me through reading, and for your continual prayer. Happy Father’s Day to all those men, fathers, brothers, sons, and husbands that I care about. And a special warm thought to the Dad’s in my life, and to my wonderful husband who is miles away……….

In Jesus~


Share on Tumblr