I have stalled the writing of this dreaded news for several days now, as I needed time to catch my thoughts and ensure that those closest to me weren’t blind-sided by the sense of detachment that comes from writing things rather than speaking them.
In April 2006 I went to see Dr. Patel, my oncologist, for my three month check-up. Everything went well. I was due for CT scans, as I had been having them every 6 months, and the last ones I had were in November 2005. So, May would have been the month to have them. I mentioned to Dr. Patel that I was due for scans, but he left the room, muttering something about my insurance paying for them. I didn’t push the issue, even though insurance had never been an issue before, because up to that point my scans had always been “clean”. So I shrugged it off and figured I’d catch them the next time around. That was August 3rd. I saw Susanna, the nurse practitioner, this time. She was a bit alarmed that 9 months had gone by since my last CT scans, and ordered those, along with a nuclear bone scan. I wasn’t alarmed, because these are standard post-cancer imaging studies and I knew I was overdue for them. The clinical exam went well- no symptoms, no problems.
On August 17th I went to my very favorite place in all of Bakersfield- Kern Radiology. I had drank down my 24 ounces of barium like a good girl, and struggled along with them to find a usable vein in which to inject radioactive contrast. The scan took an unusually long time this time around, because the machine seemed to stop several times. I assumed it just wasn’t working well- you know, one of those ‘machine breaks down in the middle of the scan’ situations. That type of thing seems to be my lot. But I struggled through it, anxiety fully intact, and we finished without any problems. On the following Tuesday, August 22nd, I went to Kern Rad during my lunch break to pick up copies of the written reports of my scans. I always do that. I learned quickly that you can’t sit on your hands and wait for a doctor to take care of you, because they just won’t. It’s not that they’re bad people. It’s that I’m a “patient”, one of many. This is especially true in oncology practice because people are on the brink of death, so there’s always someone in more urgent need of the doctor’s attention than you. Besides, I like to keep records of my ordeals for obvious reasons, but also for bragging rights. Just weeks before my latest CT scans I decided to pull all those medical records out and organize them neatly in a binder. Imaging studies here, blood workups in this section, and pathology reports over there- and of course, all placed in chronological order. Of course I counted. Thirty-two imaging studies: CT scans, MRI’s, bone scans, MUGA scans, upper GI’s, ultrasounds, mammograms, you name it. These latest CT scans were to make numbers 33 and 34, with the bone scan I’m scheduled for in early September making number thirty-five. No wonder the Kern Rad folks know me by first name.
So I pick up my scan reports on my way to meeting Al for lunch. I walked to my car and got in it before even glancing at the words on the pages, because I’ve read so many of these, and there’s never been any urgent sense of an impending problem. But it took all of a few seconds for my entire world to come crashing down around me. Or maybe it was less like a crash and more like a melt, like heated wax hesitantly rolling down the side of a candle. In my right pelvis there is a “large multilobulated heterogeneously enhancing mass which measures 8.0 cm transverse by 7.8 cm AP by 7.2 cm CC. It is adjacent to the uterus, but appears separate from the uterus. It may be of ovarian origin.” On my left side was identified two cysts much smaller in size and most likely ovarian. In the conclusion section of the report the radiologist noted, “the right pelvic mass is suspicious for neoplasm” (cancer), and he also noted a small amount of free fluid within my pelvis. He recommended a pelvic ultrasound. Whenever I think of centimeters I always think “small”, because centimeters all smaller than inches. But in medicine things are described by these units of measurement because they are more precise, there are more units of measurement between them. But if you actually pull out a ruler and look, which I unfortunately did, 8cm is very large. It’s about the size of an average adult man’s fist, or the size of a baseball. I have a baseball-sized tumor in my pelvis.
I met Al and his co-worker for lunch, but was unable to contain my mounting emotions, and ended up inhaling my food as quickly as I could just so I could get out of the public eye. Of course as soon as I got back to my office I called my oncologist and left a message. They obviously hadn’t even gotten (or looked at) copies of my CT reports yet. I didn’t get a call back from them until 5:30pm, when the assistant called to tell me that she had shown the scans to the NP and that I needed to see an ob/gyn at Kaiser. She said they would assist me in getting a referral. That could take weeks! So I immediately called the ‘call center’ to request an appointment with the ob/gyn department. The scheduler didn’t have an appointment available for six weeks, so said she’d send over an e-mail to the ob/gyn department and they had 24 hours within which to call me back. Here we go again- the wait is on. Well, during lunch on the following day I went over to Dr. Sales’ office. He was the surgeon who had done all my previous surgeries, and I know that he would do whatever he could to help me. The entire office was at lunch, but I caught a nurse from the adjacent office leaving late for lunch, and convinced her to make copies of my CT reports to leave for Dr. Sales, which I followed up with a voice mail to his office when I got back from lunch. Again, the wait was on (or was still on). Between the cancer center working on a referral, the e-mail message sent to the Kaiser ob/gyn department, and Dr. Sales, I knew someone had to call me before the end of the business day. I tried to just go about the work tasks and meetings ahead of me, carrying my cell phone in my pocket just in case. I did get a call from an ob/gyn nurse asking me what exactly “the issue” was, as the e-mailed message they received was disjointed and difficult to make sense of. I laid out for her the sequence of events and the grim reality of my situation. She gave me the patronizing, “sounds like a follicular cyst, they’re very common for young women. I’ll bet you were ovulating when you went in for the CT”, speech. She agreed to talk to the pelvic surgeon and to call me back before the end of the day to let me know if he wanted to see me immediately. Well, she called back while I was on my way home from my last meeting of the day, and yes, he did want to see me the next day. They would have to “squeeze” me in. I’ve been “squeezed” so many times now I don’t know if I should feel grateful or throw up.
So last Thursday, August 24th, Al and I both had to clear our schedules out, putting aside our work priorities to get “squeezed” into a time slot where no time was thought to exist. I was told to expect a two hour wait, but was fortunate in that it really was only about five minutes. Sitting on my hands for two hours in a room full of beaming pregnant women, some even older than myself, would have been like some cruel technique of psychological torture. Dr. Fuller is his name. And he has a yet unnamed surgical teammate who does not practice in Bakersfield, but comes up for “extraordinary” surgeries so that there are second opinions and double expertises’ in the cold stench of the operating room. Two for one. So, I went through the most undignified and humiliating clinical exam I have ever had in my life, which was topped off with an intravaginal ultrasound. Yes, I have a very large tumor. It is not a fluid-filled cyst. But the question is: what exactly is this tumor? Is it benign or malignant?
Honestly, the odds are not in my favor. It could be a metastasis of my inflammatory breast cancer, although that would be very rare. Rare enough to make case study presentation in a leading medical journal, maybe. It could be a new ovarian cancer. That too would be rare, given my young age and lack of family history. If my inflammatory breast cancer had hormone (estrogen) receptors, that might make a little more sense in some single correlation. But I wasn’t ER+. I had a tubal legation, plenty of pregnancies, breast fed my children- all lowering my risk factors for ovarian cancer. But, Dr. Fuller said, I am obviously predisposed to inflammatory cancers, and I have had a lot of cancer-causing chemotherapy. But, it may not be malignant. It may be an inflamed hyper-active ovary from the several months of hormone suppression caused from the before and after surgery chemotherapy cycles. That sounds good, anyway. We can only hope now.
One thing is certain, whether it is malignant or benign, it has to come out. Even if it were a simple ovarian cyst, it will not spontaneously resolve because it is way too large. They have to do a full abdominal incision to remove the mass. Laproscopy is not recommended for tumor removal. During this appointment surgery was tentatively scheduled for 9/14/06. While I am opened up in the operating room they will send the tumor to the pathologist, who will look at it to determine if it is or is not cancer. If it is cancer Dr. Fuller and his surgerymate will proceed with the staging process. (They will remove my lymph nodes in that area, one by one, until they find consecutive nodes that do not contain cancer cells in them.) This tells them how far along the node chain the cancer had gotten, which also provides valuable information for treatment options and prognosis. If the tumor is not cancerous, they will leave the nodes intact. But either way, he is recommending a radical hysterectomy with removal of the ovaries. If it is cancer, this procedure will be necessary anyway. If it isn’t cancer, it will be considered a prophylactic (preventative) response- at least I won’t have future worries of ovarian, uterine, or cervical cancer. Well, theoretically anyway. But there are some potential long term effects of having my ovaries in particular removed. And some of those are concerning. I’ve lived with ‘hot flashes’ and all those annoying, but non-threatening symptoms when I was in ‘chemopause’. But there are increased risks of heart disease, of bone disease. I’m still just 33 years old. I most likely will be pursuing a second opinion on that aspect of the surgical decision tree in the coming week.
I’m scared. And I don’t want to go through another major surgery- this one even more serious than my previous ones. I’m tired. Emotionally drained. I had just started to get my momentum in my position at work, just started to work towards a longer term feeling of security. I just started feeling like I was getting cancer under control, and like I was rebuilding. It’s almost funny in a very sad way- as the appointment with Dr. Fuller carried on I cried more and more until the only thing I could do was cover my face with my hands and sob, as I sat on that examining table, stirrups erect, naked from the waist down and covered by only a thin sheet. The more visibly upset I became the more “positive” his thoughts on my situation became. He went from shaking his head in disbelief, muttering on about “bad streak of it” (luck), to standing squarely as he forcefully put forward that I “must keep in mind that the odds this tumor is cancer are very small”. The poor guy was looking for a way around all that melted wax so he could make a safe exit out of that examining room.
I tried to gather whatever dignity I had left and went back to work for a short time, leaving early for home. I had a good cry and a good shout at God on the way home. Now that surgery was inevitable and imminent, I had to spill the beans. Having to tell my parents was hard. But written words always seem to soften the emotional intensity. Having to speak the words was much harder. And telling the kids. How can I tell them to be strong and to think positive, when I myself cannot? And yet, how can I not tell them to be strong and think positive? It’s peculiar and difficult emotional terrain, but not entirely unfamiliar. In fact, it was almost a repeat of May 2003, except for the fact that we do not know for certain if this is cancer. I have had other “scares” within the past 3 years, but none like this. Those other scares I was able to shelter my children from, as they never progressed to demonstrate my fears. But this is a major surgery. A four day minimum hospital stay, an eight week recovery. I had to tell them.
I think I will need to be sedated two days prior to the surgery just to get me calm. I’m already at the brink of panic attacks, and my blood pressure is through the roof. I was tearfully sharing with Al today that this is incredibly emotionally difficult for me. It feels like rape. The operating room is a very dark tunnel. Utter darkness. No thoughts, no feelings, no images, no smell, no hearing, no touching, not even dreaming. Blackness. Death. I will never understand how or why some people seek that, enjoy it. I think I’ve come to the conclusion that the thing that separates me from them is that I must like pain. They do not like pain and will avoid it at all costs, even death. Pain reminds me I am alive. It’s not the pain itself. I mean, it’s not the pain that I like really. It’s the feeling- any feeling. Some people would find the surgical procedure emotionally traumatic- the stench of burning flesh, the sound of the cutting, the clinical and even casual conversation in the operating room, the extreme frigid temperature of the air. I don’t care to see it, but if I didn’t feel intolerable physical pain, I’d actually rather be awake. It’s going into the utter darkness and not knowing what will be on the other side, if there will be a way out of it, that is the most traumatic to me. It’s going in knowing that if and when you come out, are brought out by the mercy of some anesthesiologist, your body and mind surviving the shut down and re-start, you will be given a message. And that message will forever be etched in your mind with all the traumatic impression it deserves- will I live, or will I die? Is this cancer, or is it something far less life threatening? Will I be able to feel relief, or fear? Will I be allowed to recover peacefully and quietly, or will I have to fight hard to get the strength back quickly so I can get back to cancer treatment? Will time be on my side, or against me? Yes, surgery is traumatic. It is rape. And I don’t like it. And this surgery will top them all.
But an ob/gyn nurse called yesterday to notify me that my surgery date had been moved forward to 9/8/06- a day before my mom’s birthday. Apparently it is that urgent. And what can I do? Well, I’ll tell you what I’m doing! I’m getting a tattoo. Don’t laugh. I’m serious. I know some people aren’t going to understand this at all. But, if this is cancer I won’t be able to get my breast cancer tattoo finished for quite some time (if ever), because you can’t get tattooed while in cancer treatment. If it’s not cancer I’m still going to be laid up for several weeks, and I will have a fresh scar that makes it’s way right through my tattoo and the area of the tattoo that is left to be finished. You cannot tattoo over a scar for at least 6 months, maybe even 12 months after getting it. And I’ve been thinking about this new tattoo for a while anyway. So it’s become my anchor. When I say that going through the dark tunnel of surgical anesthesia is lonely, terrifying, I’m not ignoring the fact that I always have a spiritual companion, Jesus Christ, the son of God, who is with me. It’s just that the experience can be very intangible- that’s why it’s faith. You can’t always see or feel the presence. And so it helps us dirt-bound humans to have something tangible. Not a golden calf, just a reminder, an anchor. For some people that reminder is a cross. It symbolizes something to them. But for me the cross is about an eternal hope, a hope of resurrection. And that is the most important hope we have. But there’s a human hope too. A hope for this life. A hope for health, for recovery. A will to live. And so, that’s what this tattoo represents to me. It’s not a hope outside of my faith, but a widening of my faith. So, if you’re close, come by and visit me while I’m recovering and ask to see my hope! 😉
We’re all getting through this as best we can- one foot in front of the other. The shock is quickly wearing off and we’re emotionally processing. The kids are each dealing with it in their own ways, and it isn’t easy for any of them. Amanda started high school last week, Justin started his senior year, and Jared will be starting a brand new school after Labor Day (the week of my surgery). We face a challenge ahead in maintaining grace with one another as we allow room for the emotion and all the individual needs and compromises that are going to have to come out of this. I hate that. I hate that I won’t be there for most of Justin’s varsity football games, or that I won’t be able to pick Jared up or drop him off from school. And I really hate that Al has to once again face the possibility of losing me. I hate that something even more will be taken from our marital intimacy. But I’m not going to ask for prayer. I believe prayer is powerful and important, so if you’re compelled I won’t discourage prayer. But I’m not asking. I’m still angry at God, still trying to accept this “bad streak”. And I see that God’s will and purpose is much more powerful and eternally compelling than the power of our prayers when praying for the things that we want, or we think are right things to pray for. God have grace and mercy on us all!
Always in His Grace~
P.S. For my Bakersfield friends/family, surgery is 9/8/06 at Mercy SW. I’ll be there a few days, and then home. Al will take some time off, and depending on the message on surgery day, may or may not go back to work. My mom and dad will be down for the surgery, and most likely mom will stay to help out. But you are welcome to call, to write, to come over. Our home is open and you needn’t feel like you’re burdening me/us. We are all in this boat together and I appreciate you all!