I know I’m long overdue in writing, as it’s been nearly two months since my last update. But, I have a more legitimate excuse for my delay this time, as I was waiting to actually have something significant to share about my treatment progress. And I do have a lot. But, to maintain some amount of suspense, I’ll save the biggest news for last. Besides, maybe through my writing, and your concentrated reading, I might be able to approximate the emotional roller coaster that cancer treatment can be at times. The biggest difference, of course, being that you can skip ahead. In real life we don’t have that ability, and are powerless to do much other than buckle our seatbelts and hold on.
Since my last writing I’ve had two more chemotherapy treatments and have lost another friend to cancer. Those of you who have been reading along with me since the beginning may remember in November 2004 I wrote about “the incredible shrinking woman”- a woman I met at the cancer center and developed a connection with. I saw her last year at the Relay for Life survivor’s lap, and have seen her a few times around town, enjoying precious time with her family. I was so sad to learn that Linda passed away in January. Also, this month is the one year anniversary of the death of Terri Gray, who was a friend and sister in the IBC battle. One of the chemo nurses at the cancer center, who has become a trusted friend, shared that a woman even younger than myself recently passed away from colon cancer, leaving behind a very young child. Although I didn’t know this woman, it always hits close to home when I hear about a young mother who is taken by cancer. Cancer surely is no respecter of persons.
You know, God has a way of teaching us grace. Some call it “karma”. Several years ago, when I worked at Aspira, the head supervisor of our office solicited the corporate sponsorship for Relay for Life, as cancer had touched her family. When I was there that irritated me because my interests were in domestic violence advocacy and I felt that because we were a foster care agency we should have been directing our support to causes that directly affected the kids we were working with, and cancer was not one of them. Cancer survivorship was not a world I was a part of, and it was not something I understood, even after having stood on the sidelines as two of my relatives battled with a cancer that took their lives. Although I still do not believe there was a significant connection between foster care and cancer, my understanding of the cancer community and of survivorship has not only deepened, I have found myself a part of that community, forever changed by cancer. I look back on those months at Aspira and think, “if only I would have known”. Relay for Life is again coming up in a couple of weeks, and I do plan on attending. Last year was the first year I was able to attend, as previous years my emotional state prevented me from participating. My first inkling to participate came in 2005, two years after my diagnosis. But I didn’t commit to participating then. I tucked it in the back of my mind, and tentatively planned on throwing on some tennis shoes, making the quick lap that Saturday morning, and getting on with the rest of my day. I mentioned it to Al, but when that Saturday came, he had no interest in attending, and it was just as easy for me to not. It wasn’t something I could do by myself. But that bothered me. Somehow I felt like it was important for me to do that survivor’s walk, to embrace the fact that I was surviving, and was a part of the cancer survivor community. I guess I just wasn’t ready. But I decided that the following year I would participate, and I made a point to let Al know how important it was to me. So in 2006, three years after I unwillingly joined the cancer community and in ‘remission’, I did my first survivor’s lap at the Relay for Life. Al went with me, assigned the role of picture-taker, as he walked right by my side around that track. The kids all stayed home. Even now Justin says that the RFL is “gay” (meaning dumb, for those of you not up on the current teenage lingo). The all-knowingness of 18 year olds, huh? They say we have the biggest RFL event in the state, and seeing the hundreds of survivor’s walking around the track with their purple shirts on was like nothing I have ever experienced. I didn’t just see them. I was one of them. On both sides of the track were people- friends, relatives, co-workers, care providers, caring supporters, cheering all of us on. Some of the people on the sidelines were crying, and seeing their emotion made me want to feel alright about crying. But the survivors for the most part were happy- skipping, holding hands, laughing. It seemed to be a celebration for them. But I didn’t feel those emotions. I wanted to sit down in the middle of that track and cry. Just let go and cry. I struggled to not allow the floodgate of emotion to open, because I truly would have become overwhelmed by it. And I know that Al felt restrained too. Even though the misalignment between felt and expressed emotion made the experience seem ingenuine to us both, it was an important experience in learning to embrace cancer, and perhaps life, more fully. I knew I would be back the next year. And here we are. It’s so peculiar that last year I struggled so much and was in ‘remission’, and this year I have so much more peace about making that lap, and I’m in treatment. The luminary ceremony is something I still am not emotionally prepared to participate in, so may set that goal for next year. But, just like I had hoped last year that this year the kids would get involved, that hope was fulfilled when I took the idea of a team to Amanda and she was instrumental in developing a team of students at her high school who will participate in the relay. So the kids, at least one of them, will also be a part of the RFL experience this year. That means more to me than I think they know.
But, enough of that mushy stuff. You want to know how treatment is going. Well, I’ve had two treatments since I last wrote. The first of those two I had an allergic reaction to the carboplatin, which is the third bag of chemo I get in a sitting. It was my 7th treatment of that stuff. The reaction started with a sneezing fit, and it turned into a red, blotchy rash that developed in areas of my body. My hands and wrists turned red, the rash encircled my mouth, my eyelids turned red. I was told by the chemo nurses and the Nurse Practitioner that it’s not uncommon to have a reaction to this particular chemo after several treatments. So, the infusion was stopped and I was given another steroid (I routinely get dexamethasone with treatments), and then Benadryl. After about an hour the reaction subsided and I was able to tolerate the remaining half a bag of chemo. I recuperated on my usual 21 day cycle, and went back in for my 8th treatment on April 3rd– it was to be my last scheduled treatment before re-evaluation of my progress and treatment. So we were all a bit nervous about it. As a family we had come together to pray, my husband and children laying hands on me as we asked God to completely heal me. The past couple months have really been significant for me, for all of us really, in terms of faith. We have so many changes on the horizon- moving, Justin graduating and perhaps leaving the family, Jared moving on into junior high, a significant family vacation in early June. Big changes. Monumental life events. So of course, my cancer has been on our minds a lot lately. And on one hand, while I am grateful beyond words to be alive to see Justin graduate from high school (an event I doubted to ever see when I was first diagnosed 4 years ago), I am also cautious about my future. Making the decision to buy a larger, more expensive home has been a real walk with faith for Al and I. We’ve really had to pull through it together. The times when he has doubted, I have been able to minister to him, and the times I have doubted, he has ministered to me. But, as the closing date on the escrow for the new home nears, and as treatment progressed, we were very nervous. There’s a lot at stake. And while the new home represents a grasp onto the future of my family with me being a part of that, it also represents a fear that I might not be there, and that my death might leave my family in a bad financial situation. I certainly didn’t want to move and then force them to sell the house to move again, when the loss of me would be significant enough. Staying in the home we’re in certainly did seem the wisest choice when considering that scenario. But we have so outgrown the house we’re in, even with Justin’s impending flight from the nest. And then there’s that neighbor. It would take more energy to explain that it’s worth at this point, but basically for the nearly six years that we’ve lived here she has continually harassed us, even to the point of causing emotional duress for all of us. When Justin was in the hospital with that staph infection a few months ago it reached a head when Amanda called me from the house in tears, as I was visiting Justin. This lady had really overstepped herself again. And I was so tired of the kids not feeling comfortable to play or even be outside in their own neighborhood. Rather than handle it the way perhaps Al would have wanted (and I’m not talking about turning the other cheek), I decided to go a different way with it. So I put my trust in the judicial system (as unto God) and filed for a civil harassment order, certain that it would be granted and this neighbor would get the message and leave us alone. But it didn’t turn out that way. The week after my 7th chemotherapy treatment, still sick from chemo, I showed up to court with another neighbor who came to testify, and so certain I would be victorious that I wasn’t prepared to go up against an attorney. She showed up with an attorney and didn’t have to utter a word as I scrambled to fit the role in playing attorney with my limited life experience. It ended up that not only did I not get the order, I was ordered to pay half her attorney fees. That little stunt cost us $1,150. So with our heads hung low and no restraining order, moving was a very attractive decision. This was especially hard for me, as the thought had occurred to me that if I was going to die in the foreseeable future, I certainly didn’t want to do it in front of this neighbor. She’s nosey enough as it is.
So there were weights on both sides, with my cancer really being at the center of the scale. There were good reasons for moving, and for staying in the home we’re in now. Ultimately we came to accept that moving because of my neighbor was not a legitimate reason, and that also staying because of fear I might die from cancer was not a legitimate reason either. While both factors had some logical aspects to them, both were absent of faith. And we knew we had to take this decision in faith. But, the day before my 8th chemotherapy treatment we were still uncertain about the state of my health, my prognosis. We were still maintaining that we could back out of escrow and cut our losses if the scans showed that the cancer had progressed, even though we had made the decision to step forward in buying the new home in faith, and had been praying without ceasing since. The curious aspect of the incremental measures of faith I was given over the past couple months is that I felt that God was affirming in my heart more and more that we were to step forward in buying the new home. Al was far more financially insecure about it than I was. And I don’t know exactly why that is. Al says it’s because I really want the new house, that my emotional attachment to it outweighs the logical analysis of the decision, and therefore I’m willing to risk everything to have it. I’ll admit there is an emotional attachment, and I would be disappointed if the purchase fell through. But honestly, it’s more than that. Even though Al and I agreed to have a ‘safety exit’, agreeing that if my scans showed the cancer had progressed we’d back out, within myself I felt God telling me that even if my scans did show progression, I needed to trust Him and move forward in faith. But I’ve always struggled with discerning the voice of God. I am very self-analytical, almost too much so. The result is that I don’t trust my fleshly motives and realize that I possess the ability to fool myself into thinking I am far more spiritual than I really am. I am still learning how to discern between the true voice of God and my hidden fleshly motives. And it didn’t help that Al was accusing me of being less than spiritual, believing that my “faith” was really a mask for my strong fleshly desire to have the house at all costs. I don’t want to use that word “accuse” in a way that makes it seem so much harsher than it is. I just can’t apply a better word. In truth, I greatly respect my husband for holding me accountable, for questioning my motives. It isn’t like being falsely accused, or like being condemned. We both love one another enough to speak the harsh truth, if necessary, to affect spiritual growth. So I didn’t feel a need to be defensive about his accusation. In fact, I felt the need to minister to him the measure of faith God had given to me.
So the day before my 8th treatment we again have this conversation about the house, knowing my scans are coming up and escrow is getting near closing. It’s settled in my heart and mind, but Al’s doubting. And God uses my measure of faith to minister to my husband. “We have our ducks all in a row”, I tell him, going over the details of our financial situation. “So it’s not like we’re moving forward in total arrogance with no back-up. With all of them lined up, we may not expect them all to come through, but the odds of them all getting blown out of the water far exceeds any random chance. If that happens, then even that has to be the Hand of God, and we’ll just have to accept that if/when it comes. So, I’m certain that we are to move forward in faith”. Even as I said that, God’s Spirit pouring through me, I am doubting my scans are going to show positive changes. And that’s the most peculiar part. I am doubting, but have no fear. I am thinking that my cancer is worse, but I am at peace. It’s really hard to paint a vivid picture of it with words, because my relationship with God is so personal, and so intricate. I do know that over the course of the past several months the words that were spoken to me by that woman at MD Anderson, a complete stranger to me, have echoed in my mind many times. She stopped me as we walked in opposite directions, asking if I was a “believer”, and then whispered into my ear that I should not listen to what the doctor’s say, but should trust God, that He wanted me to know that He was with me, would never leave me, and that I would be ok. Although she never said directly that God was going to heal me, she said that God would be with me, that I needed to believe I will be healed, and that I would be ok. Although I have had turbulent emotional times since then, it’s as if she spoke peace right into my spirit at that moment, because that overwhelming fear of death has not seized me since. I have clung to her words, not as a hope for healing, but as an affirmation that even unto death God will not abandon me, and I needn’t be afraid. And I know people have been praying for my peace. So it’s been a blessing to have that peace with God and to not be struggling with Him so much. It seems the struggle I’ve been having these days has been with myself. But with faith and peace, even that becomes small.
So, it’s Spring Break (Holy Week, or whatever you want to call it), and the kids are all home. Justin and Amanda both ask to accompany me to chemo, which is a surprise. They usually show little interest in my treatment and know very little about what I actually do go through being in treatment for cancer. When I had the allergic reaction from chemo, I came home to tell them about it and Justin wanted to argue with me that I could not have had an allergic reaction. He insisted that if it had been a “real” allergic reaction I would have stopped breathing and would have been given a shot of adrenaline or something. So I was glad he was coming, because I wanted him to hear the nurse confirm that I had had an allergic reaction. I suspect his stubbornness was really motivated by anger and denial about my cancer. So I can’t fault him that. But it is so frustrating to not only not have the support of my children, but to even meet resistance from them at times. Jared stayed home, as chemo is an all-day endeavor. So, the four of us made home at the cancer center, getting there at 9:30am. Because I had an allergic reaction the previous treatment, the treatment team agreed that I would be pre-medicated with additional steroids to prevent another reaction. I got that. I got the Herceptin, the flush, more pre-meds, the flush, Taxotere, the flush, then the carboplatin. Three chemotherapy agents in one sitting is a lot for the body to tolerate. And this was my 8th treatment with this protocol. My chemo nurse friend had confirmed with Justin that I indeed had an allergic reaction last treatment, and that it’s not uncommon for reactions to occur after several treatments. His resistance began to slowly melt away. And I feel safe, as I’ve been pre-medicated for this last treatment, so shouldn’t have a reaction like I did last time. But when is it that a potential complication doesn’t actually happen to me? I mean, short of death or a heart attack, it seems like I’ve had more than my share of complications over the past 4 years. And half way through the infusion of carboplatin it started- sneezing. Within minutes of that I was turning bright red all over my body. The last reaction was confined to areas, but this time my entire body, even the palms of my hands, turned bright red. And my chest got tight. My arms and hands started to swell. And then my throat started to swell. If you’ve never had that happen, it’s hard to swallow and feels like a rock is stuck in your throat. Of course the infusion was stopped and I was given more steroids. More benadryl. More steroids. More benadryl. They gave me oxygen too, just to make sure I was getting enough. I must admit at that moment my spiritual peace played a very small role in the unfolding drama. It’s hard not to panic when you can’t breathe well. And within minutes my chemotherapy recliner was encircled with nurses, observing me as they gave me more and more medications to try to counter the reaction. That was frightening and reassuring at the same time. After several doses of various anti-inflammatory types of stuff and a couple of hours, the reaction started to subside, and I was released to go home. The remaining half bag of carboplatin was not infused, as the decision was thankfully made that I could no longer have carboplatin. My body was letting us all know that it had had enough of that toxin. And that too produced mixed emotions- relief and anxiety. The chemotoxicity was starting to weigh on me, so I was glad to be done with the carbo and didn’t want to flirt with any more reactions like that, but it had seemed to be effective in at least preventing progression of the cancer, so having to abandon that and potentially move on to another chemotherapy was disappointing. I was actually very glad that Justin and Amanda were there to see that though. When they were little I always tried to shelter them from things that might cause them fear and anxiety, but now that they are older, it seems they need to have that bit of reality. And I was glad that Jared stayed home. He’s still too tender to have to deal with that. Jared asked me nearly every day of his break if I still had cancer. He knew that we were coming to a crossroads, a re-evaluation, but knowing very little about cancer treatment, every appointment I had he would later ask me if I still had cancer. I had to keep reminding him that we would only know after scans, and I wouldn’t get the results of those until the following week. So I know it was weighing on his mind, and he was more interested in knowing than he has ever been.
So we were all kind of on pins and needles. That bad reaction really took a toll on my body and it seemed especially hard on me. I spent the first several days after treatment not being able to accomplish much, some days not even being able to get out of bed except for basic tasks. But I had to get out for a MUGA scan that Thursday and then PET/CT scans on Good Friday. As much as my faith had been a focus the past few months, it seems like the Holy Week slipped by with little acknowledgement. I was unfortunately in a fog, shuffling one foot in front of the other just to get through the moment. And I was so sick and strung out from the chemo, that for the first time ever I had to ask that they inject some anti-anxiety medicine into me to get through the PET scan. For more than 30 minutes you have to lay completely still on a small table inside a narrow cylinder, with your hands over your head. Even closing my eyes isn’t sufficient because the lights are so bright in the room that when you go into the tube the light is deflected and the shadow is detected through the eyelids. So I know when I’m in the tube. Even the air is different in there. But if I open my eyes, seeing the walls of the machine so close to my face and head, I will panic. I don’t know why I never asked for Ativan before, because it really helped me get through the scan, and 30 minutes seemed like ten. Anyway, the following Tuesday, last Tuesday, I went to the cancer center for my weekly shot and blood test. I asked the receptionist if I could get the results of my CT/PET scan, but as is their policy, she said I had to wait to see the doctor. My appointment with Dr. Patel was the following day. But I hate waiting. Besides, I like to know before I go in to see him so I know what to expect, what questions to ask, and am not so overwhelmed by emotion that my logical brain is subdued. So I leave Al in the waiting room and head back to the treatment room to ask my chemo nurse friend if she can help me- look to see if the scan reports are in my chart and ask if one of the NPs can go over them with me. Kim skims through the electronic chart and comes to the PET scan, reading the impression- “no abnormal suspicious metabolically active foci identified”. Basically what this means is there is no evidence of cancer in my body. It took me a few seconds, but when it hit me, I honestly wanted to drop to my knees. I fought back the emotion, as my eyes welled with tears. Kim felt it too as we hugged one another. But our shared moment was cut short when one of the nurses from the clinic comes back to get me for the appointment I was there for. And I have to walk back through the waiting room, where Al is sitting. As soon as I come out of the door, tears streaming down my face, our eyes meet. I know in that brief moment his heart had to have sank. He knew I was going back to try to find out the results of the scan, and here I was coming back through the door, tears streaming down my face. The seconds it took for me to get to him so that I could whisper to him that the scans were clear, must have seemed like some of the heaviest seconds of his life. I honestly thank God for the strength of my husband. But sometimes that comes across as insensitivity, or lack of care. He asks, “they were clear”? I confirm. It is overwhelming. Then he follows me back into the clinic for my weekly Coumadin finger stick. Tears are still streaming down my face, as the nurse is paying no attention. So Kim finds her way back to me, and stands there for a few minutes, turning to Al and asking if he’s even excited. Al stands staunch, holding my purse for me, making no change in his position, or even in his facial expression. “I’m happy on the inside”, he says, “but you just can’t see it”. That’s Al. The incredible weight of the emotions we have had to go through, the ascensions and plummets, the dark tunnels, have been amazingly overwhelming when considered as a whole. And I know Al’s seeming lack of emotion is really his need to be strong for me. I can’t imagine if I had a husband who was as emotional, or even more so than I. Not only would I have to battle cancer and my own emotional tie to it, I would have to always feel like I had to be there to support him, fix him, walk around on eggshells to keep him stable, make him feel ok. I thank God for my husband as he stands right beside me, holding my purse.
So the following day, last Wednesday, I see Dr. Patel. Of course, he is very pleased to see that things are looking good. But he’s cautious. My tumor markers are elevated and my Circulating Tumor Cell count is still at a “1”. That’s a big difference from the “130” it was, or even the “11” it was when I started treatment. But even at a “1” it indicates there is still cancer free-floating in my bloodstream. The various scans and their results are just one piece of the diagnostic/prognostic puzzle, he reminds me. And he isn’t sure how to proceed. He asks me to return to MD Anderson to meet again with Dr. Cristofanilli. Al and I were able to pick up his insurance through his employer this past few months. We pay for the premium, so can only afford him (which is required for me to be covered), and myself. But the monthly loss was justified because his insurance will cover any trip to MD Anderson I need to make. So, that’s not the prohibitive factor it was when I first went to MDA last October. But, we have so much going on. And, we really can’t leave the kids behind, as we have no one to be there for them while we are gone. So I plead with Dr. Patel to just make contact with Dr. C and discuss my case with him, as there probably isn’t anything Dr. C would say differently than if he were to see me in a clinical setting first. I’ve had all the scans, all the blood work, all the chemo. The only thing going to Houston would do is allow Dr. C to see my face, examine me with his own hands, and perhaps order some further tests to be done while I am there. But they would all be tests I could do here. So Dr. Patel agrees to contact Dr. C, stating that at this point his inclination is to not give me any more chemotherapy. He believes that my body might become resistant to the chemotherapies, and it’s best to maintain as many untried chemos in the arsenal as we can, just in case I have a recurrence again. And that is likely. So Dr. Patel cautions me to watch and listen to my body- to report every concern. Don’t be paranoid, but vigilant. I am to see the Nurse Practitioner monthly, have complete blood work monthly, and have scans and see Dr. Patel every 3 months. We’re also watching my spleen, as it’s significantly enlarged. So I’m not loosed from the cancer center just yet. I still have to go weekly for my Coumadin check and my blood counts, as my whites and reds are still struggling to come back. But for now, there’s no more treatment scheduled. I am so thankful that by our vacation in June I should have hair back, my blood counts should be strong, and I should be feeling a whole lot better. I can also start back on finishing my tattoo, providing things continue to improve over the next several months. So these coming few months are going to be very special ones for us as the reality that I am again NED sinks in, we move into our new home, we see Justin graduate from high school, and we venture out into the world on another family vacation. God has indeed blessed us.
When I finally got to tell Jared that the scan results had come in and that I didn’t have cancer they could see anymore, he didn’t give much reaction. I asked him if he was happy, and he replied, “I don’t know”. We’ve all been through so much with this. It truly is a form of trauma. The other day I was asked by someone how I feel about all of this. Well, I’m obviously happy. But, the strongest feeling really is relief. It’s probably like coming home from a war. You’re happy to get to go home to your bed, your family, but the greater immediate feeling is relief that you’re out of the line of fire. The joy of embracing your loved one is almost secondary to the relief that you’re not going to die first. I also have this sense of disappointment in myself- while I had the peace to accept if my cancer was the same or had progressed, I didn’t have the complete faith in my healing. I responded in a human way, a fleshly way, by preparing myself for the worst. But God gave me the peace, and now I’m wondering why I doubted the healing. It’s really hard to explain. I’m not a “name it and claim it” type of Christian. I’ve seen God heal those who haven’t asked for it, and bring home those who have. So I don’t feel guilty for having a lack of faith- like my healing depends on that. A long time ago I went to a women’s retreat when two women who attended the church had cancer. During a time of intimate worship I felt God telling me to go lay hands on one of the women with cancer who was also at the retreat and pray, that He was going to heal her. He also told me that He wasn’t going to heal the other, but bring her home. I doubted- “why would You take the one with small children? What if I tell the one that You want to heal, and You don’t? What if this voice I am hearing is not the voice of God and I look foolish”? So I didn’t do it. I sat silently, battling in my own mind, no one ever knowing. On the way home I cried. I knew I had made a mistake and was disappointed in myself for not having trusted God. As it turned out, the woman I was to lay hands on did get healed shortly after the retreat, and the other one was taken home several months later. That was a valuable, but painful lesson and I have reflected back on it many times since. That same sense of disappointment I had then is what I feel now. I guess what I’m saying is that through the peace that God gave me the past few months, He also used that still, small voice to tell me that He was going to heal me, but my logical mind, my fleshly mind, doubted it. Thank God that His will does not depend on me! But I’m not moving forward as if I am forever healed of cancer. I too am cautious, and I also think that I have one more bout with this thing in me. I’m always restrained in sharing such private thoughts and ideas because I truly do not know for certain. None of us do. But God does, and I can find great comfort in that. So, for today, I am relieved, joyous, and again in a place of trying to reclaim my life from cancer. I appreciate all your prayers and concerns, and ask for you to continue in those, as moving forward has it’s own challenges.
Always in His Grace,