I have certainly been sad along this road but hadn’t yet had a big tearfest at the doctor. Or really a ton of tears in general. Until today. Something hit big and deep and hard. As many of you know through your own pain and suffering, sometimes there’s an “unexpected” factor that becomes a multiplier of our sadness. Along those lines, I hated losing my dad at 20 (with big losses of quality of life for several years before) but his death wasn’t a surprise. And, while it was very sad, it would have been an even more painful traumatic sad if I hadn’t seen it coming. And though today’s debrief of our pathology report was on a much smaller scale, I think the same principle applied – the sadness was amplified by the unexpected. I didn’t really see it coming. Maybe I should have. Or, maybe it was more of the Lord’s grace because I hadn’t really worried about pathology results post-surgery and have always assumed, even as I concluded in my last post, that I knew the treatment plan and we were on course. I viewed chemo as the worst element of my treatment and was thankful it was first and over. I thought surgery would be the next hit with a “one two punch” strategy as, Dr. Osborne, my oncologist describes it. [She’s a fiery tiny redhead so it’s funny to me when she uses her boxing analogy – and usually with air swings to complement the language.] So, as you know, next was surgery and we thought we were on the downhill. I think Dr. Osborne did as well. Or, maybe that was just her hope for me and she cheered toward that end until she knew otherwise? As she did today. As I’ve said before, it’s like things are finally catching up to us. If I’d thought about it for half a second, surely it would have occurred to me that they don’t really really really know what cancer we’re faced with until they do surgery, get it out, and study it.
[Sidenote: As I attempt to explain what we learned today I realize it’s still a little foggy and foreign to me and I may botch it a bit, especially in medical terms. But, then again, maybe, unless you’re a doctor, you won’t know. Hopefully you can just roll with it knowing that I’m learning with you. Ok, maybe slightly ahead of you as the patient but barely.]
Anyways, kind of like things started with “unfortunately …” from the surgeon’s office this week, the first word I remember from Dr. Osborne today was “disappointed.” And, shortly thereafter, I remember “discouraged.” We had hoped that the chemo would have really put the hurt on the tumor and it was even possible that they’d cut me open and find almost nothing – or just scar tissue. But, no, not so much. They cut me open and found a decent sized tumor remaining (about 2cm, I think). And, a lot of “lymphovascular invasion.” In layman’s terms, the doctor said, “this cancer has shown it knows how to travel.” Of the several biological markers they look for in assessing treatment (same ones they looked for with biopsy sample 6 months ago), they were disappointed that only 1 of those had been substantially altered by chemo. The good news is that they did slow the proliferation rate and that they stopped the tumor from growing. But, unfortunately, the tumor still showed a strong hormone positive receptivity (estrogen and progesterone). And, since I’m a female who clearly has female hormones, that’s a problem. The tumor feeds on these hormones and even though they’ve shut down my female organs with chemotherapy, that apparently wasn’t enough. Speaking of risk, she repeatedly referred to me as “high risk” and I finally asked what that means – a high risk for cancer to return. And, since the average age of onset of breast cancer is 61, she admitted that there’s still not as much data as they’d like about cancer patients that present in their 20s or 30s.
At about this point in the conversation, I don’t think I was crying yet. Just trying to process. I think my mom had already started crying (while taking furious notes) but I was still in the game. I think. However, as she continued and I realized that she was starting to “double down” on our treatment plan, the gravity of her concern hit me. We thought we were on the backside and about to taper but we were wrong – the fight is on. I’m not referring to a fight for my life but just an aggressive effort to keep cancer cells from multiplying or returning. So, instead of a rather simple plan of just radiation followed by hormone therapy, she is proposing oral chemo (thankfully, it doesn’t cause hair loss or immuno-suppression so that’s good news!) in parallel with the radiation, shots to ensure my female systems stay powered down, she encouraged us to consider surgery to remove my ovaries, and then she changed the proposed anti-hormone therapy drug and timeline to start sooner and extend well beyond the original 5 years we thought. By now, I was crying. More chemo? Taking out my ovaries? Another drug for a much longer period of time? And, while she acknowledged it was ultimately our decision, it was clear that she strongly discouraged us from trying to have other children – citing that while Lincoln certainly didn’t cause the tumor that pregnancy and nursing were likely major factors in its aggressive growth and we can’t risk feeding the cancer. By now I was really crying. And, sweetly, Dr. Osborne and her nurse, Christina, sat on either side of the examining table and rubbed my back. Scott sat quietly and listened intently. My mom was still crying and taking notes:) I definitely think part of my tears were just that what seemed to be predictable (the plan) and what we thought was partly our decision (future children) were both slipping away quickly. And, if I like anything, for better or worse, it’s a plan and a little control. Ahh, yes, I too recall my previous entries and I know that it’s just the allusion of controlbut, nonetheless, what little I had was running out the door and was already down the elevator and on to Gaston before I could process what she’d said. And, I think it bears repeating that I love adoption and I love the idea of God surprising us with His plans for our family whether that be “one and done” or more. And, we were never deadset on must-have-another-child but, somehow someway, it was another shocker and just a lot to process. And, then, another wave of tears. This time crying as I reiterated what I’ve said here a dozen times but probably never said to Christina or Dr. Osborne. I can’t believe that, at 38 and 47, after only 4 months of marriage and on birth control, we got pregnant. God knew. He totally knew. He knew that I’d be asked to consider having my ovaries taken out shortly thereafter and He knew, even though we weren’t sure we wanted kids at the time, that we would be so glad we’d had Lincoln and, in His mercy and grace and kindness and love, He surprised us and gave us a little man to love! Really, God? Are you this good to us? Yes, He is. He totally is. And that same good God still has us. And He still knows what’s best for us. And, while we are surprised with today’s news and will be surprised with whatever He unfolds for our family, thankfully, He isn’t.
I’ll meet with Dr. Lamont (surgeon) next Monday. I still have my drains and got a lengthy explanation from the oncologist on why I wouldn’t want them out too early under any circumstances … because, as bad as they are, fluid collecting on the inside of my body is much worse. And, thankfully, I had a fashion break-through last night and decided that instead of pinning them to my bra, I could just wear a sports bra and stuff the drain in between my boobs – it’s not the best look, I don’t disagree, but the uniboob is better than the terrorist. And, depending on what I’m wearing, there may or may not be wire protruding out the top but this is infinitely better than the drain dangling from a safety pin under my clothes. So, drum roll please, not only did I drive myself to the doctor’s appointment today but I actually got out of the house a second time in the afternoon with Gigi for some “manicure therapy” to rest, indulge myself in their pampering, and cover up my hideous-looking nails (chemo, you have been unkind to my hands, my feet, and my head!). So, 2 outings in one day – I am living on the edge. An ounce of freedom is worth a pound of insanity cure. I now have hopes that the drains can come out on Monday at the surgeon’s office. We really like Dr. Lamont and our radiologist, Dr. Cheek, so Scott is looking forward to visiting with them in upcoming appointments to continue to process the pathology report. I’ll go back to Dr. Osborne in 3 weeks for my first shot to ensure my ovaries stay “off” and discuss how to execute some of the proposed ideas from today.
Today, once again, I found myself really grateful for excellent medical care in our community. Though our surgeon is out of town, Dr. Osborne had been texting with him about my results and, while on vacation, he had reviewed my pathology report. Dr. Cheek, the radiologist whom I’ve only met once, was also already engaged in helping think through the best strategy going forward. Dr. Osborne spent a ton of time with us and her passion is fighting cancer. I’m thankful for it. I also told her today how thankful I was for her as cheerleader when I needed a cheerleader (always very encouraging about me staying active and my bloodwork results and enduring chemo well) and then a straightforward truth-teller when I needed a truth-teller (no sugar coating today) and then a big dose of compassion as a back rubber too.
The silver lining on all the intensified treatment is that, though it’s a lot, most of it doesn’t as negatively impact our quality of life like chemotherapy, surgery or drains. Have I mentioned I’m really wanting the drains out?! Most of this is pills and more intensification of what was already planned. And, if we agreed to the ovaries surgery, that’s another day surgery. And, as much as it’s a shock to process the range of choices between semi-permanent or permanently turning off my ovaries, I really-100%-without-a-shadow-of-a-doubt trust that the Lord will bring grant us His peace (Phil 4:6-7) with that decision and also to complete peace about how He has planned our family before the beginning of time. It’s just a lot to process today. But, we know we are in the hands of a mighty God who never sleeps nor slumbers and ordains life and numbers our days so any and all of this is absolutely within his sovereignty and goodness. Neither Scott nor I are wavering on those truths. In fact, that reminds me of probably the very sweetest part of our morning. Dr. Osborne and Christina left and the room remained silent as the 3 of us sat and soaked in what we’d just heard. The first words spoken were Scott’s “well, can I pray for us?” and from across the room he prayed the sweetest prayer. His first matter of business was just praise to the God who has shown us His soveriegnty, love, care, power, and grace in so many ways. And especially for the gift of Lincoln. And then He just laid our hearts out before the Lord. It was the perfect way to conclude our appointment and to turn our minds and hearts toward the One in whom we rest. Psalm 91:1 Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.
Lastly. For the ladies. Go do a self-exam. Today. And once a month from now on. Pretty please.
In the Shadow of the Almighty,
Jen and Scott