The Q & A shesh March 3, 2018
Posted by Judy in Musings.2 comments
Between my appointment with the medical oncologist and the radiation oncologist this week, I was able to get all of my questions about this progression answered. I’ve gotta tell you, it feels really good to have answers and to have a concrete plan!
Q: Do I need to get my liver and lung biopsied to make sure it’s the same cancer?
A: No. Doing so wouldn’t change the treatment plan. Also, the lesions that are on the liver and lung are very, very small and we don’t really need to worry about those organs having major progression. (This is a small bit of good news!)
Q: Should I get an MRI of my brain since the cancer seems to have moved around a lot?
A: Yes, I think that would be a good idea. We’ll send it to the insurance company for approval and then get you scheduled. (I’m having the MRI on the 22nd. I don’t think there is anything there, but this will be provide a baseline.)
Q: What happens if I decide to not do any more treatment and just ride this out?
A: Well, it’s hard to predict, but certainly you’ll have more and more progression to the bones. Beyond that, it’s really hard to know. But if you are ever to the point where you don’t want to mess with treatment anymore, I’ll support you 100 percent. (I’m not to that point yet, but I DID want to know what exactly I was trying to avoid by taking new medications.)
Q: My thighs really hurt. It might be my thighs, it might be my bones, I don’t know, but it’s painful. Should we figure out why?
A: Yes, that would be a good plan. Your femur bones are really important, they bear so much weight, so we want to make sure they are strong. Let’s x-ray your bones. (The x-ray showed a small metastesis to the top of the L femur. The rest was clear, so no help there.)
Q: What are my treatment options?
A: You have two options right now. We are stepping away from anti-hormonal treatment because that just doesn’t seem to be working well. You can continue on oral chemo and take a drug called Xeloda that has a roughly 20-30% response rate. If you are going to see a response, you’ll see that in about 4-6 weeks. The other option would be to move to IV chemo and use Adriamycin and Cytoxan. (AKA – AC) (Cytoxan is one that I used last time in 2014. I didn’t use Adriamycin, the “Red Devil” because I had heart issues. Those issues are resolved, so it’s now an option.) Adriamycin is a SUPER toxic chemo, but very effective. You would take 4 doses (every 2 weeks) and then if the chemo has caused remission of the disease, then we could talk about going back to some of the anti-hormonals. But once you’ve done AC, you can’t do that combo again. This combo has a quicker and more effective response rate, but it’s certainly more toxic. (I really don’t want to go back to IV chemo if I don’t have to, so I’m leaving that as an option for later. I’m going to take Xeloda, which I’ll talk about at the end.)
Q: How often will I have to drain the pleura?
Q: Also, when I breathe in, it feels like I have pop rocks in my throat. What’s up with that?
A: We can do a chest x-ray to check on the fluid and decide about draining. I want to make sure you don’t have air in your chest wall that could cause your lung to collapse. If you find that you are having to drain your pleura too often, we can talk about installing a pleural catheter, which will allow you to drain the fluid at home. (Right now, I have a small to moderate amount of fluid. This is one week after having had the thoracentesis. The idea is that the medication could eventually kill off the stuff that is causing the fluid to collect. Since I haven’t started the medicine, the fluid seems to be collecting quickly. Sooo, I might be considering the pleural catheter.)
Q: How can radiation help me? I mean, once the vertebra is fractured, what can be done?
A: Well, right now, your T3 vertebra has a compression fracture that is causing the outer part of the bone to push out into your spinal cord. I’m actually very surprised that you are not in excruciating pain, given that your spinal cord is being pressed on! (Answer to prayer?) So if we do 10 rounds of radiation to that area, then we can reduce the amount of cancer in the bone. Right now, the bone is in really bad shape because there is so much cancer there. We won’t be completely getting rid of the cancer, but we’ll be able to reduce it such that the protruding bones will be able to come back together. You could also do a consult with a neurosurgeon who would place screws and a rod in your spine, but that is a BIG surgery with a 3-6 month recovery time. If you choose to go that route, you’ll be taking an asymptomatic situation and creating a symptomatic situation. I would recommend against that. (Totally agree!!)
Q: Could you look to see why I have so much pain in my lumbar spine?
A: Well, it looks like you have diffuse bony disease in L3, L4, and L5. This means that there are small little spots spread out all over the vertebrae. This will cause you lower back pain, and it could also be causing you pain in the thighs. (Aha! Now we know why my thighs hurt so much!!) I would recommend radiation to the L3 area as well. If we do this and you are still having pain, there is one more place that we could target: the place where the top of your femur meets your pelvis. (Man, I love having answers to my pain questions!!)
So those are all of the questions that I got answered this week. I also talked with the chemo nurse about the drug Xeloda. I’ve heard about this drug and how harsh it can be. I’ve had friends who had diarrhea so bad that they ended up in the hospital dehydrated and with resulting kidney problems. I learned when I should call the doctor to make sure I don’t get to that dehydrated point. The drug also causes an effect called hand and foot syndrome, in which the skin on your hands and feet swells, is painful, itches, and peels off. The only thing you can do to help prevent this is to moisturize, moisturize, moisturize! So you know what I’ll be doing! It can also cause vomiting, but I have a plan to deal with that as well, and strict instructions on when I’m supposed to call the doctor.
I’ll be starting the drug tomorrow morning, with a big glass of water and an even bigger glass of trepidation. I really pray that the medication will do its job with minimal to no side effects. This is partly because I’m not exited about the side effects, but also because I want to go visit my BFF in Florida!
So there you have it, a long, but hopefully thorough update. I’m feeling better and more positive, but I’m also realistic and know that this new drug is only expected to give me an extra 6-9 months. Of course, I’d love to be on it longer, but there’s no telling because that’s how this disease works.
It’s a roller coaster.
There’s no cure.
It’s terminal.
But the drugs can kick the can down the road for an undetermined amount of time.
Thank you for your continued prayers and good thoughts, and for supporting me with your kind messages, and with your monetary donations and gifts of food. I am humbled by the outpouring of love!
Miniature Christmas Tree May 6, 2017
Posted by Judy in Musings.Tags: cancer, faith, scans
4 comments
Having a PET scan is very similar to getting a CT scan or a bone scan. The tech injects a radioactive isotope into your veins. Said isotope moves through your body, and then a machine takes a bunch of pictures. The difference with a PET scan is that the pictures provide a look at the cellular level while the other scans look at the larger internal structures. They inject a substance called FDG, fluorodeoxyglucose, which is a simple sugar chased down with a bit of radioactive material. The idea is that cells need sugar in order to reproduce. Cancer cells are greedy, and as such will gobble up sugar when it’s available. So the isotope and the sugar circulate through the body, then the pictures are taken. By some magic that I don’t quite understand, the end result is a set of images. Areas that are dark are presumed cancer free. The bright areas are those that light up because the sugar and isotope have been gobbled up by cancer cells. So that’s your crash course on PET scans. Now, on to my experience and results.
My veins are a train wreck thanks to chemo, so I always warn people that my veins like to behave badly, they roll and they blow. This time was no different. The vein she chose rolled and then blew. She tried again on my forearm and had success. Once she injected the goods, I sat around and watched “Love it or List it” for an hour while the sugar/isotope circulated through my body. Once in the scanner, I had to lay still and got sooo bored. So I sang a song that happens to be DD’s favorite:
My God is so big,
so strong and so mighty,
there’s nothing my God cannot do.
The mountains are His,
the rivers are His,
the stars are His handiwork, too.
Then I thought about a text message that my aunt had sent me last night saying that for some unexplicable reason, once you lay down on the scanner, you feel peace. And you know what, I did. I just knew that regardless of the results, I would be at peace.
Then I started getting ancy, so I started counting specks on the ceiling, and the holes in the machine, and anything else that I could see without moving my head. They really need to have better things for patients to look at, like a little slideshow on the ceiling would be great!
Anyway, so fast forward to 5pm when I called the nurse and got the results of the scan. She led by saying that she unfortunately didn’t have good news. Then she went on to tell me that there’s disease in both of my axillary areas, in my right humerus bone, in my thoracic spine (mid-back, which I think explains why my fall over a month ago was so painful), and in my right groin. She said the next step is to get a biopsy of one of the bony areas to see if this is a new cancer or if it’s the previous cancer metastasized.
This is not the result we were hoping for. Evenso, I’m feeling very calm about the whole situation. The nurse was even surprised at how well I was taking the news. Honestly, I’m kind of surprised, myself. As I’ve been thinking about it for the past 6 hours, I’ve come to the conclusion that a confluence of factors is helping me find calm.
- Faith – I just know that God has a plan and that He’s got me. Never in my life has He left my side. Yes, there have been challenges, but I was a better and stronger person on the other side. This is another one of those challenges that I will weather with Him sustaining me. My aunt sent me a quote from a Dwight Nelson sermon: “Faith takes us beyond reason, beyond empirical evidence.” I can’t love this quote enough!
- Prayers – So, so many of you are storming the heavens for me and my family. While some might say, “But you have more cancer, He didn’t answer your prayer.”, I would say that He did answer, it was just “No”, or “not yet”. Just because He didn’t answer in the affirmative doesn’t mean He has let us down. It would be easy to just throw your hands up and say, “I quit praying, He didn’t do what I wanted.” But I would counter that this is the time to step up the prayers as well as changing the focus. Yes, pray for healing, but also pray for understanding, acceptance, and faith. So don’t give up on the prayers, keep them coming, because they work and I can feel them.
- Indeterminance – This might seem like a strange word to associate with calm, but in this case it fits. Here’s why: while I have more information now, it’s not complete information, meaning that my path is not yet determined. We don’t know if it’s a new cancer or the old cancer. We don’t know how much cancer there is in each area. We have no information on it’s treatability. As far as I’m concerned, that’s a whole lot of uncertainty, and I see no point in getting stressed out and worried. Sure, the Grim Reaper is knocking at my door, but at this point, to door is still barricaded.
- Support – It goes without saying that I have the most amazing friends on the planet. The amount of support and love pouring onto my FB feed today was unreal. All of the texts and FB messages covered me in love. It’s so, so amazing and I’m humbled!
- Hope – While I don’t have concrete information as to the extent of the disease, my gut tells me that I should still have hope. In my gut, I feel like this is going to be treatable. Think about the cancer in the bones. You may be thinking, “Wait, I thought her bones were clear?” Yep, I thought that, too. But remember that the bone scan just shows the major structures while the PET scan is on the cellular level. My thinking is that the size of the cancer was below the threshold of what could be seen in a bone scan, thus leading me to the conclusion that the cancer in the bones is small. This is a good thing! Obvs, it would be even better if it weren’t there, but that ship has already sailed and no use in trying to chase it down. So, even though my scan lit up like a Christmas tree, it was only a miniature Christmas tree, and so, I am hopeful.
What’s next? I see my oncologist on Monday afternoon to discuss, and I plan on having a slew of questions to throw at him. I’m going to want to see the pictures. I’m going to want to know how big and terrible, or not, this is. I’m going to talk to him about alternative therapies (diet, supplements, etc) to complement the traditional therapy. I’ll expect to leave armed with a plan of attack.
I’ll leave you with three youtube recordings of songs whose lyrics are giving me comfort, and with a quote from my Aspie 9 year old.
“Lots of cancer doesn’t mean you are dying. Lots of cancer is just lots of cancer.”
Stuck April 22, 2017
Posted by Judy in Musings.Tags: biopsy, cancer, tests
4 comments
I started composing this post in as a story format, but I got stuck. Then I considered writing in memo format, but I got stuck. Then I thought about tying the post in to rain and umbrellas and deja vu, but got stuck once again. Since the third time doesn’t appear to be the charm, I’m throwing my hands up in defeat and going for short and to-the-point.
I knew when the nurse wouldn’t tell me the result over the phone.
I swore in my head when the nurse asked if I had a follow up appointment.
I tried to remain calm when the nurse asked if I could come in an hour.
I just couldn’t see how any of these events would lead to a good result.
I knew I would be right.
I wish I had been wrong.
The aggressive, grade 3 cancer beast is back.
It’s the same lobular and ductal beast that attacked me last time. Sometime next week I’m having a PET scan to see if the beast is anywhere else in my body. It’s pretty likely that it is not in my bones since that scan came up clear a few weeks ago. No idea, though, whether the liver, brain, or lungs will be clear. The scan results will be available the same day, and the oncologist, hubby, and I will get our heads together to come up with a plan. There are two paths.
- PET scan is clear = local recurrance = new hormonal meds to kills off my ovaries, and thus the estrogen that the beast so loves; possible radiation; surgery to remove the 1.5 cm nodule
- PET scan is not clear = metastatic disease = a whole lot of unknowns as management of a chronic disease is an ever-changing process
While we have some info now, it’s only partial, so not much will happen between now and the PET scan. I do know the following:
- Today was my last day taking Tamoxifen, since it’s apparently not doing it’s job very well.
- I won’t be doing chemo again since it provides minimal benefit against ER+ (estrogen receptor positive) breast cancer recurrence
- I’m tired.
- Hubby is sad.
- I’m praying that this remains a local recurrance.
When it rains . . . April 17, 2017
Posted by Judy in Musings.Tags: biopsy, cancer
5 comments
The past three weeks have presented me with a slew of challenges. I got a cold, which is generally NBD, except that I had a concert and I needed to be well. Despite my best efforts (rest, zicam, fluids), I ended up with laryngitis. Despite my best efforts against the laryngitis (elderberry syrup, honey and lemon, anise tea, warm compress on my neck), I wasn’t able to get rid of it in time for the concert. So for the first time ever, I had to miss a performance, which sucked.
But there’s more. The same week that I got sick, as I was running up the stairs, I tripped, fell, and ended up with an excruciatingly painful muscle strain. As in, I was laying on the stairs saying, “Ow, ow, ow, ow!” It didn’t matter how I moved, the pain wouldn’t go away. I’ve heard it said that having a kidney stone and giving birth are the most physiologically painful events. I’ve given birth to four babies, without medication, and hands down, the pain in my back was so much worse! It’s been three weeks since my fall, and while my back is better, my movements are still hampered and stiff. Oh, and did I mention that hubby was out of town that week? Fortunately, my rockstar mom was visiting. Emotionally, though, I definitely missed having my other half there.
But wait, behind door number 4 you’ll find more challenges. During the laryngitis/muscle strain week, I had my biannual check up with my oncologist. The scarring in my armpit had changed, becoming more spread out and squishy, and I showed him a spot where it felt like I had a string in my armpit. He poked around and decided that it would be a good idea to have an ultrasound to see what was going on. I’ve had my pit scanned at both of the previous check-ups, so this seemed like NBD. It took a few weeks to get an appointment, so I went in this past Friday. As usual, the tech did the scan, went and showed the doctor the images, then came back. The difference this time was that the doctor came along. After scanning again, the doctor tells me that she’d like to do a mammogram to get a better look. In my brain I’m thinking, “No, no, no, no, no!” This was starting to feel oh so familiar. This is exactly how it went last time. I did have the presence of mind to ask, “Do you see something that is of concern?” She responded by saying that there was a questionable area which she wasn’t sure if it was just scar tissue or something more ominous, and she preferred to err on the side of caution, given my history. I whole-heartedly agreed, but was still saying, “No, no, no, no, no!” in my head.
They took me into the mammogram room and set me up for a picture of my armpit. Now, you must be wondering how in the world they do a mammogram on your armpit, right? I was wondering the same thing. I mean, generally, the breast tissue is flopped onto a flat surface and then squished to smithereens with a plastic paddle-looking thing. The last time I checked, my armpit was not floppable! They set me up at a right angle to the flat surface. The side of my chest was vertical and my arm was horizontal, with my armpit at the corner. Somehow, the tech got my pit onto the flat surface and then squished it with the paddle thing, which also dug uncomfortably into my shoulder. It was awkward, but way less awkward and painful than the breast mammogram. Anyway, after several attempts, a successful picture was taken and the tech went to confer with the doctor. She came in and said that she wanted to go to the next step, a biopsy. And I thought, “DAMMIT!” This doctor was much more forthcoming than the one three years ago who kept parroting, “In an effort to provide thorough care . . . . ” She again said that she just wasn’t sure about one spot, and the thickness and dark color of the scar tissue made it hard to see what was going on, so a biopsy was the logical next step.
I went into the scheduling room with the nurse. It was the same room where the previous doctor had informed me that a biopsy would be necessary. The same room where I sat on the couch and waited for the doctor for what seemed like forever, trying desperately to not freak out, failing miserably. The superstitious part of me decided that this time, I would steer clear of the couch, in hopes that the news would be better this time.
My biopsy will be tomorrow afternoon, and I’ll find out what’s going on by the end of the week. I want to have faith and believe that this will turn out all clear, just like the bone scan. It’s just that I’m having a serious case of deja vu, and I’m feeling like when it rains . . . . . . it pours.
Remembering Frances Crawford February 29, 2016
Posted by Judy in Musings.2 comments
A very special person passed away this week. Frances Crawford. She was my voice teacher in graduate school. When I came to the University of Illinois, I didn’t know a single person, and I certainly didn’t know anything about the voice faculty. That first summer semester, I just so happened to be taking a Music History course where I happened to meet Kathy Watson, (also a singer), who happened to introduce me to Frances. (As an aside, I don’t actually think that all of those things just “happened”. They were all providential.) I liked Frances from the instant that I met her. She was so welcoming and made me feel like this business of moving to a place where I didn’t know anyone wasn’t going to be so bad after all. I didn’t know anything about her vocal skills or her teaching skills, but I knew I liked her. I knew she made me feel comfortable. And so, I asked if she’d be willing to take me on as a voice student, and she said yes. I am forever changed for having had the chance to study with Frances.
That first year of grad school was quite the roller coaster for me. Thankfully, I had two positive constants: Frances Crawford and Eric Dalheim. (You can read about my experiences with Eric, here.) Frances was always so upbeat and positive. She was a petite woman, but her personality sure packed a punch! Not only that, her knowledge of how the singing voice worked was astounding. Every lesson, I was amazed at her vocal knowledge. I guess I shouldn’t have been given that by the time I met her, she had already been teaching for over 50 years. But amazed I was. I would be struggling to make a particular sound or to sing a long phrase in one breath and she’d say, “Try lifting just this part of your palate.”, or “You aren’t out of air. There’s always more air. Trust yourself.” Once I figured out how to do the things she asked, it was like magic, the problem was solved! She had a seemingly endless number of little tips and tricks up her sleeve. She shared so many of those tips, that when a college friend visited me towards the end of that first year, his first comment was, “Wow! You really have learned a lot this year!”
After grad school, I kept in touch with Frances and took lessons here and there whenever I had an issue that needed some of her magic salve. We saw each other around town, she attended my wedding, and rejoiced with me at the birth of my first born. Time passed, I moved away, she moved away, I moved back, she moved back. We saw each other again about 3 years ago at a BACH concert. That was the last time I saw her.
I learned of her passing on Friday, and it was like a dagger to my gut. It had never occurred to me that, one day, she would no longer be around. Maybe that should have been obvious to me, but it wasn’t, and I was stunned. I attended her funeral services this weekend, and have been in a dazed and grief-stricken funk. I’ve been trying to sort out why this has hit me so hard. It’s not like we talked on a regular basis or anything, it had been three years since our last communication. I’ve come to the realization that I feel the way that friends who have lost their parents have told me they feel. Frances wasn’t my parent, but she was. You see, she was a parent for my voice. I met her when I was 23, the vocal equivalent of a teenager, a time when all sorts of tumultuous changes were going on and I was trying to sort out how to live with and use this voice I’d been given. She was the vocal parent: guiding my voice, encouraging me when things didn’t go well, challenging me to do more and be better, rejoicing with me when exquisite sounds poured forth. As any good parent, she also influenced other areas of my life. Being 23 meant that I was trying to sort out how to be an adult and figuring out who I wanted to be. Having her as a constant, positive, energetic and encouraging presence during that time affected me for the better.
Friends who have lost their parents tell me that after the parent is gone, they see their parent and the influences exerted on their lives everywhere. It’s a constant reminder of who they were. Now that Frances is gone, I find that I’m hearing her voice in my head as I’m singing.
Each song that I sing is successful because of some tip that she taught me.
“Just let that note spin on its vibrato.”
“Let those low notes drop down into the basement.”
“That note needs more low support.”
“Imagine yourself as a glass without a bottom.”
“Put more [ae] behind that “e” vowel.”
People say that with time, they have a hard time remembering the voice or facial features of a loved one. I hope that I will never stop hearing her voice in my head. Her voice will be a reminder of all that she taught me. I hope that her voice will forever share the gift of her magic salve.