How Sweet the Sound

On Friday, September 8th, 2006, just one day before my mom celebrated her birth for the 50-somethingest time, at 7:30am my conscious mind was suspended and my muscles were paralyzed by the odd concoctions of the anesthesiologists, while my body underwent the trauma induced by the sterile (well, we hope anyway), steel tools guided by the surgeon’s hands. A team, Dr. Paul Fuller (a gynecological surgeon) and Dr. Robert Pretorius (a gynecological oncologist), met me in the operating room and through a 12+ inch vertical pelvic/abdominal incision, while the anesthesiologist stood on watchful guard at my head, they kindly removed my healthy uterus and cervix, along with my “previously interrupted” fallopian tubes. Both of my hormone-producing and otherwise healthy ovaries were also removed. But also attached to them were tumors. A 8 x 9 x 4 centimeter tumor (about 2  x 3 ¼ x 1 ½ inches), weighing 172 grams (.4 pounds) was affixed to my right ovary, while two smaller (2cm) tumors were attached to my left. Unfortunately, these tumors were tested by the hospital pathologist and were found to be metastasized breast cancer. I have joined the ranks of other women living with metastatic breast cancer.

Strangely enough, I hardly cried when told the diagnosis. I think that although I was surrounded by hopeful people, deep down I knew that it wasn’t a matter of “if”, but of “when”, and as hard as I tried to pretend cancer didn’t happen to me, the reality of that 80% recurrence rate haunted me on almost a daily basis. That reality was especially grating when so many of the women I had come to know, had spent so many hours praying for, had been taken away from their own families by Inflammatory Breast Cancer. But the saddest part is, at least for me, I had succeeded in putting my best foot forward, had subdued the depression that had left me immobile, and had again gained a certain stride that had me moving forward, further away from cancer. I was smiling again, laughing, appreciating, planning, and most especially, hoping that maybe I was going to be in that 20%. “If you can make it to 2 years you’re pretty much out of the woods”, he had said. And I was so close- more than 3 years since diagnosis and a year and a half since completing treatment.

But God knew even before He brought me forth in this fleshly body, that this was my destiny. Once again I find that well-meaning people who hardly spoke to me in years prior feel the need to encourage me by reminding me that God is a Healer, and some even share that His will is to heal. But I know that is not the truth, because I have seen “good” Christian women taken away from their families through disease. And if it is in fact “the devil” who is singularly responsible for all our suffering, our pain, our infirmities, our losses, then I would have to point out that the devil seems to be winning this war. No. I am a person who is desperate for purpose, for meaning, and I refuse to submit myself to the vain idea that all of this we are being asked to endure is the work of some meddling and ill-meaning devil. God is in control of this. I know this in the deepest depths of my being. But it has taken me a few weeks to get to this place of even acknowledging, because I was so angry that I didn’t even allow myself to go that deep. The pain and burden of this cross is gut-wrenching. It’s knee-buckling. And my anger provided me a temporary reprieve before having to really shoulder it- as if by my anger I might scare God away. One thing I have learned is that God’s will is done, in spite of ourselves. Jonah is a good lesson on that. A prophet once told me that I am not like Job, but like Jonah. As angry as I was at her for saying that, throughout the years I have reflected back on it many times, and have come to intimately know how right she was. It’s not so much that I bring trials on myself through disobedience, but that I don’t easily submit myself to trials God is requiring me to go through. And in the end, I get a lot more battered and bruised than may have been necessary because of my struggling. But even though I know this, I don’t know that I can really say much more about it. This is a familiar theme- I wrote a lot about wrestling with God the first go-around I had with cancer. And it seems this time around, maybe because I was so overtaken with anger, my struggling wasn’t lessened, but intensified. I would want to believe that if God’s purpose in this was to refine my faith, my character, so that I was more submissive and struggled less, that the progress in that refining process would be seen. But I rather like who I am. And it’s hard to allow yourself to be changed when you like that part of you that is begging for the change. So I can only conclude that either this is a tragic display of how tightly us humans hold onto things we shouldn’t and the pain that is caused by our refusal to let go (remember, monkeys swing from tree vines, holding on and letting go in an effortless motion to propel themselves forward), or that God is purposing even my wrestling for unseen affect. Which, I believe He is. I mean, regardless of who or what I am, or how much struggling I do in whatever personal purpose God has for me, He will extend His will in and through me. I believe that only because His Grace is amazing, and I have been touched by it.

Yet, however much the sound is sweet, I am not easily lulled by it. I continue to thrash around as if I am wrestling a bull to the ground. I came home from the hospital on Monday, September 11th, 34 staples and several stitches holding me together. Dr. Fuller, who previously showed little interest in preserving my ongoing and elaborate tattoo work decided in the surgical room, I suspect upon seeing the fullness and beauty of the tattoo, to pull together the incision where my tattoo was cut through with stitches so that it could be more precisely lined up. It’s not the same as it was, and touching up the area will require several months of healing, but it was a sentimental gesture. As I spent last week recuperating from the fogging effects of anesthesia and the internal healing of a deep incision, I began to think more and more about my predicament. As soon as I was able to sit in my office chair long enough to do some internet searching and compose some e-mails, I made contact again with the IBC Research Foundation. I could find no information on metastatic IBC to the ovaries, and I had not encountered any other women engaged with the IBC e-mail lists I belong to who had a similar circumstance. So I had no idea what to expect for my upcoming appointment with my oncologist, and I certainly do like to be the captain of my treatment team. But the IBCRF responded with a “we’ve never heard of this” e-mail. So my foggy brain shifted into four-wheel drive and within hours I was talking with Al about the probability of having to see an “expert”, as I was certain that my oncologist would be a bit over his head with my current situation. After all, when I asked during the last appointment I had, I was told that they had only treated one other woman with IBC, and she was Stage III like me, and still in remission. With me now presenting with metastatic disease, and with a presentation not really seen before, my situation was outside of his scope of practice. I wasn’t sure if his ego would defer to this reality, so I was mounting up my tenacity to have to fight my way through the thick ego defenses, if necessary, to save my life. Not that Dr. Patel is particularly egotistic. It’s just that fighting spirit I have. And it truly demonstrated itself clearly once again, because just a few short weeks prior, I was doubting my ability to emotionally and physically meet the challenge of cancer treatment for a second time. Now here I was strapping on guns all the while wrestling bulls to the ground. So our Pastor called yesterday morning. We haven’t been to church in several months. That’s a whole ‘nother story. But he’s still our Pastor. And he called yesterday morning, the day of my scheduled appointment with Dr. Patel. Al shares with him that I had already been in contact with MD Anderson in Houston, Texas, planning to be seen by Dr. Massimo Cristofanilli, one of the few “experts” on IBC. (I say that in quotes because so much is still so unknown about this particular disease, but he is one of just a handful who has dedicated his practice and study specifically to IBC). He has treated and studied 100’s of women with IBC, so if anyone has seen this extremely rare situation I am in, it will be him. And even if he hasn’t seen it before, I feel more secure that he has had enough experience with IBC to know what pieces of information are missing, how to obtain them, and then how to proceed with a treatment plan. So, Pastor mentions that “if you feel God is calling you to go to Houston, then that’s what you should do”. But I have to tell the truth. Which is that I’m not talking to God right now. Well, at least not in purposefully conscious words. I’ve never been very good at praying for myself in the same way I pray for others. And I have to tell Pastor that I’m not certain that God has “called me” to Houston, because I’m pretty sure I didn’t even really ask Him if that is what I should do. I just grabbed the bull by the horns and wrestled it to the ground, considering God’s abundant Grace as an after-thought as I dusted off my dirt-covered hands. Pastor tells me that it’s ok, because even if I thought I wasn’t talking to God, He was hearing me, and that although I wasn’t praying for myself, others would be praying for me. It’s a good thing God is moving people to pray for me. Some are praying for my physical healing, some for my emotional and physical stamina, and most importantly, some are praying specifically for my spirit. I covet those prayers and want to share that they are affording me an ever-growing sense of peace. But I also want to ask that you not worry- God was glorified even through Jonah, as God willed it so. It’s amazing to me that even through all the dirt I have kicked up in my thrashing about, people have come forward to encourage me that they see God there and are inspired by my faith. Maybe quiet submission is not my testimony?

So Al and I headed out to see Dr. Patel, and endured a long, chaotic, and sweaty (I’m getting the full-fledged hot flashes now that I don’t have ovaries) consultation. We were first seen by Susanna, his Nurse Practioner, who by the time the hour and a half appointment was over, had gone back and forth consulting with Dr. Patel. They do not know how to proceed and want to refer me out. My situation is, as I had suspected, out of their scope. The predicament is this: my tumor markers have never been elevated, even with Inflammatory Breast Cancer invading my lymphatic system, and a baseball-sized tumor overtaking my pelvis. The surgeon did not remove lymph nodes for staging, as together he and the gynecological oncologist decided that because this was metastatic cancer, there was no point- I am by definition Stage IV cancer. And, removing lymph nodes would cause what they believed to be unnecessary damage with lifetime consequence. I’ve never had a PET scan because Kaiser wouldn’t pay for one, so any tumor would have to be over a million cells strong to have been detected by CT scan. A PET scan is definitely being demanded at this point, as it’s the only hope for a medical lifeline we have. But having a PET scan so soon after such an invasive surgery, especially when we’re most interested in the areas surrounding the surgical location, clouds the window the PET scan will provide. A natural healing and inflammatory process is occurring in my pelvis and lower abdomen, so my lymphatic system is working overtime. But it’s all we have, and the PET scan is sensitive enough to detect present tumors much, much smaller than what a CT scan can observe. But, today, we are left asking if all the cancer was removed when the ovarian tumors were removed on September 8th?  Was there some unknown factor of the cancer that caused it to make home on my ovaries, which has now been made impotent since my ovaries are gone? Or is the cancer still floating around in my bloodstream, waiting to find it’s next spot to take hold? And how do we treat it? Do we avoid dangerous chemotherapy, assuming they “got it all” and just wait to see what will happen- if and where it will show up next? And how dangerous is that approach given that my body produced a tumor of such a large size in such a short period of time? Or do we proceed with a more aggressive plan, assuming that the cancer is still in my bloodstream, and start with chemotherapy? And if we do proceed with chemotherapy, what type? Is this cancer an extremely rare metastasis of Inflammatory Breast Cancer, or is it lobular breast cancer that was initially missed, but is far more likely to metastasize to the ovaries? Researchers are still trying to understand if Inflammatory Breast Cancer is a separate disease, or just a different, a more aggressive presentation of some underlying (occult) ductal or lobular breast cancer. So could it be that all along I had lobular breast cancer in addition to the clinical signs of IBC? Generally the treatment would be the same or similar, but if we know we are forging ahead to treat metastatic lobular breast cancer, we are in vaguely familiar territory, as there are enough cases of that to have some type of prognosis and treatment protocol. But if we are assuming to treat metastatic IBC to the ovary, we are in uncharted territory and have to proceed boldly, but with close supervision and continuous and thorough information gathering, as this would be so rare that there isn’t a treatment protocol for it. With this many questions that are unanswered, it is no wonder that Dr. Patel wants to refer me out. Initially he mentioned a gynecological oncologist at Cedars Sinai, but when I shared that I had already been in contact with MD Anderson, that appeared to be a better choice. But Houston is far. A lot farther than Los Angeles. It requires I gather slides and tissue blocks, all radiological films, all rad reports, all surgical reports, all treatment notes, and a whole host of other documents. It also requires that I either forge forcefully ahead in requesting Kaiser refer me there and pay for it, or I come up with a $12,500 cash deposit before they even agree to see me. And then once we have an initial appointment, we’ll have to arrange for the round-trip flight, hotel accommodations, ground transportation to and from the airport and MD Anderson, and the funds to make the trip. And don’t forget the responsibility to balance the needs of 3 kids who are going 90 miles an hour in 3 different directions at once. It’s a lot of work- my head is spinning. And it has to happen fast because my body could be like a ticking time bomb, each day the cancer rooting itself deeper into another organ inside me.

So with all of this, my life has again been ripped away from me and my daily focus has for the second time been consumed by cancer. I do trust God with my life, even unto the end of this ordeal, in whatever turn it will take. Honestly, I am struggling with trusting that even if He should take me He will take care of my children and their needs. He is certainly searing Matthew 10:37 in my heart (“He who loves father or mother more than Me is not worthy of Me; and he who loves son or daughter more than Me is not worthy of Me”.), and that searing is indescribably painful. It is a deep well of never-ending tears. It pains me beyond pain to consider my children’s own pain and sense of loss should God take me now. But these deep-rooted motherly ties do not excuse me from God’s Word in Matthew 10:37. So I am learning. I wish I could do this as submissively, as gracefully, as some of the valiantly faithful women who have gone before me, but for right now, I cannot. I shall think when God calls me to a place of surrender, He will also overflow me with the peace to be able to do it. But for right now, I have to fight. And as appealing as my eternal hope is, as alluring as heaven is, I can only find the will and strength to live, to fight this cancer, in the hearts of my children and my husband. If this is sin, it misses the mark, or this is disobedience to God’s call in Matthew 10:37, I still believe that His Grace is the sweetest sound I have ever heard, and that His Mercy is as large as the heavens. For He has created me like this, and He has forgiven me. Is there any greater Glory?


Always in His Grace,


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