Wow. Ok, here we go. I’m just going to copy and paste an email that I sent out yesterday to everyone
There are so many people who love and are praying for my Mama…. I wanted to send out an email to make sure you’re all updated. I’m just going to summarize the entire last week… And I’m throwing in all the details, so I apologize if this is info overload – I just want to make sure that everyone knows what’s happening.
On Tuesday, we went to Duke Medical Center in Raleigh, NC to meet with Dr. Marcom, who is a specialist in metastatic breast cancer. We visited him once before on May 1st, but Tues was our official “transition” to him as our primary (and only) oncologist. He was realistic in that Mama’s cancer has progressed since May – she has lesions throughout the liver, and tumors are growing in the lungs. But he told us there are still a few more chemos in his bag of tricks (he listed at least 5 more that we haven’t tried yet), and he’s not ready to call it quits just yet. He prescribed an oral chemo that she was supposed to start Wed morning, with a follow-up appt on Sept 6th.
On Wed morning, Daddy found Mama in the kitchen floor where she has apparently passed out. He took her to their primary family doctor, where she had a moment of total disorientation.. she didn’t know who Daddy was, or where she was. The doctor recommended that she go to the ER immediately, where at 9pm Wednesday, she had a full-blown convulsive seizure. This confirmed that the two episodes earlier in the day had probably been seizures as well. They started her on anti-seizure meds, and did a CT scan that showed a mass in the brain.
On Thursday, she stayed in the hospital while the family spent most of the day on the phone with Duke. We arranged an ambulance transport to Duke, and on Friday morning at 4am, Daddy and I followed the ambulance to Raleigh. She had an MRI at 10am Friday morning, and an appt with Dr. Kirkpatrick at 1pm, a radiology oncologist who specializes in brain metastasis. The MRI showed that there’s a tumor measuring 4cm on the lining of the left side of the brain, starting over the left eye, and stretching toward the left ear. It’s not inside the brain, which is a good thing, but it’s pressing down onto the brain, which is probably what’s causing the seizures. There’s also several suspicious areas on the back of her skull. Kirkpatrick recommended that she have Whole Brain Radiation, which will hopefully resolve the known tumors, as well as any unknown areas in the brain. Kirkpatrick made an appt for today at 12:30pm with Dr. Duncan, a Duke radiologist who recently relocated to Greenville, SC, which thankfully is a much easier trip than the 5-hr trek to Raleigh.
This morning at 2am, Mama started having severe pain in her right side and was running a fever of over 102 degrees. We spoke with Marcom this morning, and they are arranging that she have a CT scan done of her chest today while she’s at the radiologist to find the cause of the pain and fever.
So here’s the summary:
Based on what we’ve been told, radiation will almost certainly kill or at least slow down the brain progression. Because of the way our bodies function, chemo doesn’t affect the brain tumors at all, so it will be necessary to do chemo for the liver and lungs. The doctors agree that the brain is top priority right now, so they’re putting the liver/lungs on hold for at least the next week until we see how Mama responds to the radiation.
The team at Duke is absolutely phenomenal… we couldn’t ask for more knowledgable, involved doctors. I just wish that we had gone there sooner.
Now for how we’re feeling….. Mama’s very weak – can’t walk unassisted, and her balance is off, which I think may be related to the brain tumor, although it could also be the mega-strength medication that she’s on. She’s still steadfastly believing that she’s healed – just waiting for it to happen. Her faith is amazing… I can honestly say that I would have given up by now, but she’s fighting for her life. After the seizure on Wednesday night, I pushed my way past the doctors to talk to her… she was completely disoriented, and I don’t think she knew who I was, but she said “Don’t cry, sweetie. You can come to my pardon…. when God heals me.” Even when she didn’t know her daughter, or even her own name, she still knew that God would heal her.
It’s hard to feel peaceful about this situation – I just feel like we’re frantically clawing at any little shred of hope that the doctors give us. Mama is the most peaceful of all of us – she’s secure in her faith, and her belief that God has a perfect plan. Thank you for your prayers, love, support, emails, phone calls, and understanding when we never call anyone back :) The bottom line is this: we have full access to the best doctors and medicine known to man, but my mama needs a miracle that only God can give her. Please keep praying.
Love to all,
That’s the summary… it’s a grotesque understatement to say that it’s been a non-stop crap storm. Mama has gotten much, much worse – she’s very weak and horribly tired. Yesterday, she had a “good day” – agreed to go to Mama Penn’s with Daddy after the appt at the radiologist, then didn’t go to sleep at all yesterday evening. She acted like she felt much better… I desperately hope that this is how it’s going to be from now on, but I know that realistically, each day is going to be its own battle. She starts Whole Brain Radiation at 1pm today… she’s having her “halo” fitted, so I don’t know they’ll actually radiate today, or start tomorrow. It’s to the point that a miraculous healing from God is the only that’s going to ever fix this… I finally feel at peace that we’re doing all we can do medically. Duke instills confidence – they are almost arrogantly confident in their own abilities, and it’s comforting. But they’re not going to be enough to fix Mama. I’m realized, some days more than others, that our life as we knew it is over. Things will never be the same. Things will never be as good as they used to be – even if Mama lives, this will be hanging over us. I realistically know that Mama is in the last stages of breast cancer. She’s fighting for her life – she’s a true scrapper, I don’t think I ever realized how scrappy she is – but you can only fight the current for so long. I don’t know if she’ll be here at Christmas. I just don’t know. I don’t know how to even imagine life without her. But I do know this – if God is going to take her, if taking her is in his plan, I wish that He’d just go ahead and get it over with. I don’t want her to suffer. I don’t want her to be so doped up on pain meds that she doesn’t know what’s going on – or worse yet, doped up on pain meds, but the pain is still breaking through. That’s no way to live – that’s not living. Just because there’s oxygen still going in and out of your lungs does not mean that you’re alive. And speaking of her lungs, they’re worrying me. She’s been wheezing for about a week now – short of breath, and struggling to breathe deeply. When she sleeps, I can hear it straining down in her lungs. Then Monday morning at 2am, she started have a horrible pain in her right side…. I honestly think it’s her lung.
I just read about pleural effusions on my message board, and all the symptoms are there – shortness of breath seems to be the most common. They’ll read the scans today at her 1pm appt, I’m assuming – I guess we’ll know for sure then.
I’m just not all here. I’m sitting and trying to focus, but I just don’t feel like it. I have a million thoughts zinging through my head…. What if the radiation doesn’t work? What if it’s so horrible that Mama can’t handle it? What if we fry her brain beyond recognition, and the liver & lungs still kill her? What if she has to wear a wig in her casket? What if none of the 5 chemos we have left work, and we just fizzle her away treatment by treatment, until she doesn’t even resemble the person she used to be? This just sucks so badly.
And I’m mad at Grandma, Grandpa and Uncle Rocky. Where are they? Why haven’t they come down here? Why don’t they act like they’re aware of the severity of the situation? Yesterday, after Mama’s horribly painful night, Daddy called Grandma and asked that they come down as quickly as possible. Her reply was “Yes, we’ll be down in a few days – as soon as the tomatoes are canned.” What the $#%*???? What is WRONG with them? Uncle Rocky hasn’t even called… he emailed her this inane email yesterday talking about how he’s riding his bike every morning, and David & Em started school, and how his babies are growing up. Does he realize that there’s a good chance that Mama won’t see her babies go up? Does he realize that Mama’s too sick to even walk across the room, much less ride a bike? Does he realize that WE DON’T CARE?!?! I just don’t get it. I can feel Amy and Mike biting their tongues – just trying to do as much as they can without saying anything that would offend anyone. But Mike let loose on Bobby last night – ranted for an hour about how Bobby and I are the only ones in our family that have any sense, and he’s pissed at Daddy and Susanna and Tom and my grandparents, etc, etc. I wasn’t mad at Daddy until Sunday, but he’s just about pissed me off. And Mike said this to Bobby as well, so it’s not just me…. Here we are. Daddy’s not working – he hasn’t been to Michelin in three weeks, and shows no signs of going any time soon. Jennifer isn’t working, and has constantly told Daddy that she can help, she can come over, blah, blah, blah. But yet Daddy got fixated this weekend on me quitting my job. Yes, because OBVIOUSLY I’m the one who should take the pressure off him so he can do CeilBrite. We talked last night about building Mama a screened in porch over the patio, and he just acted like a butt. Why would it hurt him to discuss how to make Mama happy? Mike was telling Bobby that he thinks Daddy should take Mama on a cruise… just swipe the stupid credit card and take her on vacation. His quote was “Screw Dave Ramsey.” I’m all about paying off debt and saving money, but I’m inclined to agree with Mike’s analysis – if Mama dies, Daddy will have plenty of time by himself to pay off all their debt.
I kinda want to go to Mama’s radiation appt today, but I know I don’t need to… With Maggie coming any day now, I need to stay here as much as possible. Tom and Jennifer decided to change Maggie’s name…. they’re naming her Margaret Denise instead of Margaret Lawrence. I felt a little twinge when she told me because sometimes I’m still sad that it’s not me… But it’s definitely, completely the right thing to do – Mama cried when Jennifer told her, and she’s so attached to Maggie already – she calls her “her Maggie”.
This just feels like a bad dream… Bobby and I kept putting off having kids. Now my family is operating from day to day, treatment to treatment, scan to scan – and I have such regret that I gave up those precious years that Mama could have known her grandkids, and they could have known her.
This just sucks.