Never the ride we wanted or expected but one we will walk nonetheless – upheld and strengthened by His mighty right hand. I remember so well my first entry on round one and the verse I included … Isaiah 42:16:
I will lead the blind by ways they have not known [we have known the cancer path but not metastatic (stage 4) breast cancer], along unfamiliar paths I will guide them [there are lots of different options in treatment so trusting His leading]; I will turn the darkness into light before them and make the rough places smooth [more on this in a bit …]. These are the things I will do; I will not forsake them [He hasn’t so far and won’t going forward!].
This may be a ramble of thoughts and stories and I had ‘happy medicine’ early today so can’t promise a logical sequencing. But wanted to bring our friends up to speed. We were loved so so so well in round 1 of this wild ride and have already seen a foreshadowing of the same for round 2. Thank you precious friends. My friend and obgyn came by this morning and referred to our room and support as a ‘fort.’ I feel absolutely girded and helped and protected by the prayers and presence of our friends and family.
I have had some back pain off and on for last couple of months but it wasn’t noteworthy in light of running, yoga, helping Jenn move furniture, carrying a 3 year old and life. In the last couple of weeks, however, it clicked for me (providential protection) that it was just my lower back and if it was muscular from exercise it seems like also my booty or quads or shoulders would be sore and, 6 weeks after the furniture move, I shouldn’t still be sore. So I began to be more attune to it and wondered if I should ask Dr. Osborne. Also, in the meantime (providential protection), some of my other pink breast friends and I had started a little support group for ‘pink not grey’ peeps (breasties that are younger than typical age for diagnosis of 62) and, in that group, I have met a girl whose cancer spread to her back and liver (before it was diagnosed) and the tumors broke her back. Did yall all just wince? I sure did when I first heard! Without our little group and without Shari’s story, I might have ignored the back pain. But I was at the hospital on Friday celebrating another friend finishing chemo so I texted my oncologist and asked if we could go up to see her. And, this is reason #39 that we love her … I can text and ask to see her on non clinic days and she responds with ‘come on up!’ Scott, Linc and I went up and told her about my back and she ordered a bone scan for Monday. While we waited to get scan scheduled, she loved the heck out of Lincoln. By later that night when he had a cut on his foot, he told us (with hands up signaling to keep our distance) that ‘Dr Osborne would get it’ (providential timing and gift for him). She scheduled a scan for Monday afternoon (12.8).
We went on about our day and went to dinner with some friends without any discussion or thought about my back. Until we were home about 8pm. All of a sudden I was in a heap of pain. Scott put Linc to bed and I tucked myself in as well and asked Scott to dig up some pain meds. He found some 2011 goodies and some Ambien and I struggled through the night. The next morning, we were awakened by Mr. Early Bird and I knew quickly that I wasn’t up for Mama duty. I struggled out of bed and pretty quickly texted Dr. O for more pain meds to hold me over until the scan. Instead of texting back, she called and after I explained the elevated pain and concern she sent me to the hospital – Baylor has an outpatient facility for cancer patients that is, essentially, an ER for cancer patients. It took awhile for them to get pain meds started but we knew we were in trouble when morphine and hydrocodone barely took the edge off. They ordered bloodwork and xrays of my back. They came back with thumbs up for a clear xray and good bloodwork which left me with mixed thoughts … ‘Well, I think that’s supposed to be good news but now I feel like a fool for coming to the ER and nothing is wrong?!’ This is when there was a really awkward moment when someone asked ‘have you fallen recently?’ and I SO WANTED TO LIE and say ‘no’ but instead had a flashback of my handstand fall in yoga the day before and had to sheepishly say ‘…. Umm, I fell in yoga yesterday…’ And then my pride was in full overpowering mode as I looked at Scott and said ‘please don’t let me be in ER because I fell in yoga…’ Umm, embarassing. The pain was still intense and friends insisted they join us – so we were accompanied by my childhood best friend, Jamie (aka B) and her husband, Trevor (who is conveniently a doctor!) and Angie (aka Gigi). Jamie had similar symptoms in spring so after we heard the good xray report we began speculating about kidney stones because of the spasms, intense pain, and location. We bought this theory hook, line and sinker. When Dr. Osborne came (yes, my oncologist came to see me not once or twice but three times over the weekend!) we explored this theory with her and she pounded on my back in kidney area (surprisingly it didn’t hurt). She gave us option to go home with pain meds and come back for scheduled scan on Monday or continue with testing. We had settled into fun with friends in ER and Lincoln was happy with my mom (aka Juju) so we decided we would stick around to get answers. They decided on a cat scan which would show more details on my back but also pick up a kidney stone. My dad (who died in 1993 after diabetes and kidney failure) and little brother have both had major kidney issues so I started to think this was a plausible answer. We waited for the results without much anxiety and found ourselves thankful for good care – and very curious about what was going on. We also had a great nurse who happened to also be a firewoman and knew my mom – that was super sweet. She got teary eyed talking about how loved my mom is in the department and how worried she would be. And, you tend feel like you get extra good care when the caregivers know your peeps!
Late in the afternoon, the ER doctor came in and I rather unsuspiciously said ‘oh, I guess you have results from the scan…’ as he pulled up a chair. I didn’t think much about that ‘chair move’ but Trevor recognized the nonverbal cues and the room got quiet. Very perfectly and gently and without trying to sugarcoat it, his first words were ‘it’s back…the cancer is back …’ It was (and is) a sobering, shocking, sad reality. Scott started praying (doctor still present) and then my oncologist called (mid-prayer) so we had a memorable, sweet, tearful prayer with both doctors and dear friends. After the prayer, Dr. Osborne picked up the conversation and informed us that the pain in my back is from a broken rib (broken by tumor) and there is also a mass in my liver… The answer every breast cancer survivor dreads. We are taught to say ‘I have breast cancer’ rather than ‘I had breast cancer’ because breast cancer is treatable but not curable so this is the shadow of possibility that follows us all.
Our heart mostly breaks and grieves for Lincoln. And, at that moment, the reality that we had information that would also crush my mom. But, in His kindness, God had pre-ordained plans with Jamie and Trevor that night (not at ER but they were happy to accommodate a change of locations!) so they were with us and available to drive to my house, tell my mom, and drive her back to the hospital. I still marvel at the providential protection for my mom – she got to hear in person from my friend (Jamie) that she has known for 30 years and her husband that is also a physician and is the perfect person to share and love and let my mom grieve. We were worried about telling my mom in Lincoln’s presence so Gigi went with them to take Lincoln but, as He would sweetly ordain it, Linc was asleep so Juju was surrounded by 3 of my friends who love us (and her) while Linc was protected from the news and tears.
The ER team checked us in to the hospital to help manage the pain and get necessary tests run. I had a bone scan yesterday (12.8.14) and a liver biopsy (ouch!) this morning. They will send me home either today or tomorrow.
We still have lots of questions, of course, and are waiting for lots of information that will impact our treatment plan. But, here are a few things we know:
– the cancer that was originally found in breast and lymph nodes had spread before I was diagnosed and those cells have begun to wreak havoc in bones and liver
– however, it is an incredible praise and provision of Lord that we detected it through back pain because once breast cancer becomes metastatic (fancy word for uncontained and dangerously spreading through body), it is often not detected until it has caused significant damage – like comprising liver function or lungs. And, thankfully, while there is a significant mass (2in, I think) on liver, the blood work shows my liver is still functioning very well. There is evidence of damage in the numbers but it isn’t comprising its function. We have also learned that the lymph nodes in my sternum show enlargement (usually evidence of disease) and doctors had to see this bc of proximity to lungs but, so far, no evidence of disease in lungs.
– Dr. Osborne will wait on biopsy results to finalize a plan of action but her initial thoughts focus on hormonal strategies (suppressing hormones which feed my cancer)
– the very day of my diagnosis she already had social dinner plans with all the big name female breast oncologists in our area from multiple hospitals (O’Shaughnessy, Haley, Blum…) and wanted to share my case with them to get their input
– Dr. Osborne already planned to leave today for the renowned breast cancer conference in SA and this year’s topic is ‘hormonal-based breast cancers’ (me!)
– my prognosis is being discussed as a range of months to years (probably not decades) but more likely years than months … We are so thankful for this!
– I pointedly asked her if she thought 15 years (seeing Lincoln through high school) would be ‘awesome’ (in other words, beyond expectations) and we could tell she wanted to say ‘no’ but she always shoots straight with us and, with tears in her eyes, she said ‘I think so…’ But we know that neither she nor statistics number my days and we trust the One who does.
– we are also thankful for all the incredible research and marketing (props to pink!) for breast cancer research because with each day and month and year they are one day or month or year closer to answers to medical solutions that would help our family.
I will wrap up with updated pictures because none of us look like we did when we first posted on this site (thanks again, Alyssa and Kristin) though my hair is all back! We will update the site picture soon but in the meantime I thought I would include a few from the last couple of days.
As for prayer requests, please pray as the Lord directs because He knows our needs minute by minute but our most pressing concern is Lincoln. He has been with the Rhodes’ since Sunday and they have had their hands full. We have already met with a child life specialist and are thankful for many friends and resource to help us. But, simply put, this stinks! No parent should have to talk to their 3 year old about ‘big sick’ or cancer or, in due time, the possibility of death. And no husband should have to try to maintain work and take care of their wife and be both mom and dad because, at least for now, Mama can’t even hold her little guy much less bathe or run and play or care for him alone. I can’t even find words for how overwhelmed I am with the way the Lord is supernaturally equipping Scott moment by moment with compassion, patience, leadership and love (and he would be first to admit those don’t come naturally for him … neither are they easy for me!). And I assure you that I think his role in our family given this diagnosis is infinitely harder than mine. I covet your prayers for him. I wouldn’t want to trade places with him. I know we can trust the One who put us together, surprised us with Lincoln, upheld us through the first wild ride, and knows everything to come. And I would love your prayers that we lean into Him and His faithfulness and goodness as He walks on with us.
We will be back in the blog business for those of you that want regular updates. You can either check back in for updates or select ‘follow’ and the site will email you when we write something new.
Thanks in advance for your pink, prayers and love!