Here I sit in hospice twiddling my thumbs, so to speak. It’s been an interesting few months. I’ve been dealing with this breast cancer for 13 years. And my number one way of “dealing” with it has been learning all I could about it and understanding what I needed to do to knock it back. I’d have scans, and blood work, and different scans and more blood work. I always knew where the cancer was and what it was doing.
It’s completely different in hospice. There is no blood work to let me know how fast the cancer is growing. There are very minimal scans to tell me where its at. I’m having to just lean back and float. I’ve always been very intuitive with my body, but I liked having the science to back up what I thought was happening. Now, I’m just having to trust my own intuition. And so here I sit. Waiting to die. And you know what? I’ve discovered it’s really not that much different then living each day. I get to do what makes me happy and then I nap. Then I make some plans for the near future and I nap again. Napping is great! If you aren’t taking Sunday afternoon naps you sure should be. There’s no better way to charge up for those Monday mornings.
Last month I made it to Kirksville to see Luke and Jacqueline receive some wonderful awards and graduate from medical school! I so vividly remember his white coat ceremony 4 years ago and wondering if I’d be there for graduation, and I made it!!
Hospice was a tremendous help. They contracted with a hospice in Kirksville and had a hospital bed moved into my hotel room. That made all the difference in terms of my comfort and my ability to participate. On the way home we stopped at Macdonald’s and I got a chocolate shake and French fries! And that’s it. The only thing I didn’t do was dip the fries in the shake. A small error, but I still have time to rectify things, I think.
I’ve been dealing with quite a bit of pain so we also scheduled some radiation treatments. I actually had just one treatment, but it was to my sternum, T4-T10 and my lumbar spine. It was absolute torture getting on and off of the radiation table, but it has made a huge difference in my pain. I’d go through it again if I knew the pain trade off would be the same. This is considered comfort care and not treatment. It;s not enough radiation to kill back the cancer cells, just enough to knock back the pain and make my time in hospice more comfortable.
It is a weird thing, sitting here in hospice, doing relatively well and wondering when the next shoe is going to drop. I’m trying to make the time useful. We have my Celebration of Life basically planned out, I’ve got some other projects I’m almost done with for friends and family. So now, I just try to enjoy each moment and soak in the love from everyone and give love back. I’m blown away by how many people have signed up to help me. No one really trusts me to be alone. If I fell, well, that would be a really bad thing, so I’m using a walker or a wheelchair almost all of the time now. I’ve gotten a little less sturdy, but not too bad. I can still go up and down the stairs and I make sure I do it a couple of times each day. I’m fighting a lack of appetite right now. Nothing is really sounding good. Not even my reliable ice cream. I’m not wasting away though, so there’s nothing to worry about there.
The next big adventure is to plan a trip to see Luke and Jacqueline and their new house in Dayton, Ohio. After that is Wine Night! I honestly did not think I was going to be here for that, but it sure looks like I am! I’m thrilled. We’ve had some great responses for the seed grants you have helped us fund and we can’t wait to tell you about them on Wine Night.
Here’s Steve having some summer fun.
Oh, I almost forgot, I bought more face lotion.
Most of you are aware by now that I entered hospice the beginning of February. I went to see the Wizard for my next dose of chemo and he walked in and said it was time to stop treatment. The chemo drugs, and every other form of deterrent we had tried had stopped working. My tumor markers kept going up, and not just in small increments, but by the 100’s. One week they were 700 and the next time they were over 900.
I stared at the Wizard for a moment, my heart beating and that pit of helplessness forming in my stomach, oddly enough, I began to feel a bit of relief. The Wizard had kept his promise. Way back in the beginning of this metastatic treatment plan, I had asked the Wizard to let me know when he thought I should stop treatment. I had seen too many others keep treating until they were frail and very sick. I didn’t;t want to do this. I would feel like I had missed time the time to say good bye. To talk to each other about what we really meant to one another. I wanted time at the end to say goodby. Many others make other choices, This is a horrific disease. It takes away so much and we should all honor each other’s decisions. I could not be more proud and happy, yes, happy, about the way my medical team had treated me for the last 13 years. They had become family. I knew they really cared about me and did their best to keep helping me achieve my goals while living with MBC we’ve made almost all of them, with one left to conquer this May.
This has been hard and scary. Thankfully I also have an amazing hospice team. They are phenomenal and I really mean that. I have the fierce and protective love of a friend who is determined to keep me safe, comfortable, and rested. Everyone should have someone going to bat for them like this. Beyond my friend, there is my wonderful husband and family, and a group of amazing friends and caring community.
I feel my medical care has been beyond exceptional. Did I get a second opinion? Yes I did. Did I try every nutty suggested cure out there? Well, within reason. I grasped at straws as much as the next person. I will say that I think exercise and nutrition did support me.
It’s a shocker to change your way of thinking from “what can I do to get better?” To one of finding peace with those I love and getting my soul ready for what comes next.
This has been extremely physically painful. When I came out of the hospital in January I had 6 compression fractures and at least 5 broken or cracked ribs. Since then I’ve had two more what I would call “crisis” incidents where the pain is so bad I wonder how God expects me to handle it. The hospice team and I are still learning about each other. Most of the problem is me, not trusting their expertise. I’m getting better at this. When I do, the pain is dealt with more quickly, but I have to balance the pain control with feeling loopy and sleepy.
I’ve been trying to write this for weeks, but I’d keep falling asleep while I was trying to type.
There are so many things to talk about and explain. It’s impossibly hard for me to watch how much pain I am placing my family and friends in as they watch me deteriorate. I’m even surprised by that. Most of the time it’s hard to imagine I’m in hospice (at least my vanity likes me to think so.) But as more and more medical equipment begins to fill my bedroom, I’m starting to think it might be true.
Wednesday it looked like I was ready to die in a week or so. I was hunched over and I was unstable when I walked. I was horrified as I realized I was starting to look like I belong here, on a road of transitions. Its heartbreaking. I manage more grief then anyone realizes. My loss is incredible and sometimes I let myself feel the burden of all of it so I maintain my sanity. We need to feel the intensity of our emotions sometimes, or we will loose site of our humanity.
Odd to be using face lotion and notice that its running out and think to myself, “should I buy a new one, or will this make it?
I feel overwhelmed when I try and think about what I should leave for the boys to remember me by. I freeze when I think of the enormity of the task. How can I put all of my love into some kind of momento? My heart breaks when I see my husband break down. My sons, 2 amazing human beings have been living within the all consuming grip of cancer since 8 and 5th grade. They are now 27 and almost 25.
But, as they have said, they appreciate how this has taught them to appreciate and make time for those they love and they like how hospice actually gives them time to say goodbye. They’ve taken turns in small ways of taking care of me. Luke and Jacqueline were phenomenal when they were here last week. Ranen does small things to show he cares and is noticing.
I think I still have a ways to go before I die. I plan to still be here for our May event. But if there is anything I’ve learned about this disease it’s how fast things change. I test my will and we’ll see how far my body will take me. Each week there are small changes I hate to see. But, I focus on the present as much as I can. I continue to advocate for mbc.
I’ve been busy living this past spring and summer. I stopped Abraxane in May and started on Halaven. Abraxane is super tough for me. It was a welcome relief to discover that Halaven allowed me to enjoy most of the summer after a day or two post treatment. And what a spring and summer it was!
Mid March that puppy finally arrived! He’s been the perfect prescription fulfillment. A goofy, adorable bundle of unconditional love. He makes me laugh at least once a day and has had a limited destructive presence. I think the total so far is one boot, a few socks and some cabinet scratches. Not bad for a such a loving force of nature. He’s training is going well despite being in prime adolescence at the current time. He also loves, coffee, tequila and the boat. And mud. I shouldn’t forget the mud.
Earlier this summer my youngest graduated from Augsburg and managed the Dean’s List more than a few times. I am so proud of him and what he has accomplished. Life is tougher for him and he sails through it with persistence and a smile. Right now he’s working full time at Target and despite the challenges of not driving he is making it work. It’s been a great first job. He’s a testament to the power of early childhood special education and how important those first few years are to a child’s ongoing development and success in later school years and life.
August was wedding time! My oldest married the most amazing woman ever! I mean AMAZING! It’s true that all we really want in life as parents is for our children to be happy and he is happy. Really happy. I feel so lucky that she is now a part of our life. They are both 4th year med students and have been spending October with us while doing rotations in Minneapolis. It’s beyond priceless to get to spend this time with them and see how well they are handling the pressures of med school, support each other and have a great time doing it.
And now fall is here and things are changing. Halaven stopped working in September. I was not surprised as I was having more pain. Last week we did scans and they didn’t look good. There is quite a bit of new cancer throughout my skeletal system and looks like I had a fractured rib. I’m not surprised about that. I think I’ve actually had a few. There is a tiny spot in my liver, but it’s not quite big enough to call it a real met yet, but the reality is it’s there and things are spreading. The scariest part is treatment options are becoming more limited. Like less than the number of fingers on one hand limited.
You can see in the picture how the cancer grew from April to last week. The dark and light grey spots are cancer. The really dark spot is just my bladder and me having to pee. Ha!
Last week my pain ratcheted up. Thankfully, I was smart enough to call in and had an appointment with the amazing palliative pain nurse practitioner at my clinic and she set me up with a pain plan. So far it’s working fairly well. I’m also on some short term steroids right now and if that doesn’t do the trick we will look at radiating the painful spot in my mid spine. Moving forward the plan is to start carboplatin on Tuesday. The Wizard is also consulting with the High Wizard at the Masonic Cancer Center and we’ll see if there are some clinical trials that I could qualify for. The important word here is qualify. I’ve been on so many treatments that many times this will exclude me from a trial.
I also had a bone biopsy on my left hip this week. We haven’t done one since I was first diagnosed so it’s a good plan to check the hormone status ( which can change) and send this in to see if there are any possible mutations we can target and treat. Precision medicine is important and it can work, but the reality is still very slim that we will find a targetable mutation. Here is a link to a great article that puts things in perspective. MaryAnne was a good friend and she worked hard to try everything out there to extend her life.
Metastatic breast cancer is a terminal illness. I’m not dead yet, and I still have some great time ahead of me, but it does feel like I’m stepping into another plane of this disease. I know how quickly things can happen. I also evaluated my mental health this summer and decided it was time for an antidepressant. There were times when my anxiety was becoming acute and all of the practices I had in place were no longer managing it. I’m so glad I did. I’m on a very low dose, but it has made a big difference. I was reluctant at first. I hate taking drugs and adding more to my growing list of meds, but if I truly believe it’s about my quality of life then I needed to do something about it. As educated as I am and as much as I know better intellectually there is still a mental health stigma. We all need to get over that and keep talking about our mental health and support one another.
Life is precious. The people you love and who love you are precious. It’s a tough climate out there. Please be kind and compassionate to one another. If only we could understand each other’s stories! I don’t believe the world is black and white. It’s too complicated for that. I think our job is to find the truth, to know that sometimes it’s not either or, but a mixture of both and to bring compassion and kindness into the world. You never know what a difference a kind word or small act will make in someone else’s life.
I’ve been hiding. There were so many deaths from MBC of people I cared about. I needed to take a break. But, it’s time to catch everyone up. Last summer the CMF treatments did cause problems with my heart, so as many of you know I started “the Red Devil”, adriamycin. The good news is it really worked! The bad news is, it has affected my heart. It’s just minimal, but enough to put me on 3 heart meds. That’s taken a little bit of adjustment. When I started adriamycin my tumor makers where at an all time high. Almost 400, however the adriamycin knocked them down to 69! There is a lifetime max of how much of this drug I can have because of the cardio toxicity it can cause. I was almost at the max when we stopped treatment in September. Since I’d had such great results from on it we gave my body a break and I stopped IV treatments for a few months. Well, break time is over.
I was not surprised when I saw the doctor last week that my markers were up. They’d jumped from 70 to 124. I’d been having quit a bit more pain. We scheduled a PET last Thursday, and I started abraxane yesterday. I’ve been on this before. It was still working on my cancer when we stopped it two years ago. Here’s hoping it will do the trick again. Bad news is that hair loss number 4 is coming up. This stuff makes me a cueball. Eyelashes and brows will go too.
The PET scan confirmed that I’d had progression and the cancer is growing. It also showed a possible spread to my organs. There was some movement artifact in the films and this made it hard for the radiologist to see if the spot was in my liver, or the very bottom of my right lung. There is a slim possibility that this is not cancer and it’s just artifact looking like cancer. We’ll be scheduling a new scan in a few weeks to confirm. Even if I do have progression to my liver we’d still continue with the same treatment protocol.
I won’t lie, This is getting hard. I was surprised at how much I struggled with my emotions when I was on my chemo break. I had so much to be grateful for and, I was but, I couldn’t stop wondering when it was going to come tumbling down.
This is a hard time of year for many people. It’s been hard for me. Looking forward to Christmas and the holidays is wonderful. It’s the putting stuff away that’s tough. I can’t stop myself from wondering if I’ll be here next year. I obsess over how detailed of directions I should leave on what goes where. Will they know where to hang the Mistletoe Santa? Will they remember what I’ve shared about the special ornaments and the history they tell? If I am here, how sick will I be? If I can’t flame the house down with the Beef Wellington sauce who will? Traditions are important. They tell family stories and create family identity which is an important part of strong family units.
Some times you have to search long and hard for that blade of green grass when you’re laying in the mud.
This is the question I hear most frequently from people. They see my hair growing back and assume either I’m done with treatment, or must not be going through treatment at the moment. The answer is, I will never be done treating for metastatic breast cancer. If I am “done” with treatment, it will mean that I’ve decided the disease has progressed so far and fast that treatment will do nothing but further diminish the quality of my life. At that point, I’ve decided I won’t put myself through the side effects and will spend the time I have left with my family. I’m already considered an “exceptional responder” in that I’ve survived more than 5 years with mbc. The odds of that are only 1 in 4.
I am still actively treating. Currently, I’m on an IV drug called Gemzar or gemcitabane. The side effects include flu-like symptoms, fever, nausea, fatigue, and lowered platelet counts. Hair loss is minimal and mostly consists of hair thinning. I have treatment once a week for 3 weeks and then have one week off.
The off week happens because usually, after 3 rounds my blood counts have lowered to the point that it would be dangerous for me to have another treatment. The off week gives my body a chance to recover and get ready to do it all over again. My last scans showed that this treatment is holding things steady. It doesn’t mean that the cancer is gone or has gotten less severe. It means that the chemo is keeping things in check and more or less, nothing new has grown. I have a few new spots, but they are small and some other spots have gotten a bit better. So, the fire wall is holding and we are keeping things at a nice, slow, contained burn.
In the meantime, I do what I can to support my body and me. There is no magic or nutritional cure for cancer. You can support your body and immune system, and I do. But eventually, the cancer will outsmart your immune system and spread. This doesn’t mean I give up and don’t do what I can to help myself. I like to say I’m a “realistic optimist” and I do all kinds of things nutritionally and otherwise to support my mind and body.
I’m fully aware of reality and what can happen. I’m just hoping it doesn’t happen for a long time. That’s one of the scariest parts of living with the unpredictability of this disease. Things can happen so quickly. Even though my scans look stable there is a tiny part of me still nervous. This is because I have lobular breast cancer and my tumor markers are at one of their highest points ever. Usually, when a chemo is really working, my markers will go down. Lobular bc is notoriously hard to see on scans. It grows in sheets, or fingers instead of compact tumors. Which makes organ involvement harder to spot. But for today, I’m good and I’ll stay with that!
Despite being on Gemzar I’ve been busy. I’m not sure how chemo side effects and timing have worked out so well, but they have. We’re gearing up for Ladies Midsummer Wine Night, our annual fundraiser for mbc research. This year we hope to break the $100,000 mark! I also gained a greater understanding for why supporting small research grants is so important. In my enthused, energetic chemo break last winter I applied to be a consumer advocate for the DOD Breast Cancer Research Program. I was accepted and served on a committee looking at incoming research grants. I’ve never been in a room with so many MD/PhD labels! Before research grants can apply for certain funding levels, they have to support their proposal with preliminary data. Many researchers have fantastic ideas, but don’t have the funding to gather this preliminary data and take their ideas to the next funding level. This is what Team Judy helps to support with our mbc grants. We choose a researcher to support at the Masonic Cancer Center, University of Minnesota, so they can gather their preliminary data in order to apply for the larger DOD and NIH grants. It’s disheartening when you realize how few research dollars goes towards metastatic research. Over 1600 Americans die every day from metastatic cancer. We must find a way to figure this out. It’s also why I was happy to participate on a panel at the University of Minnesota Cancer Moonshot event on June 29.
Too many Americans are dying from cancer. We need to collaborate and share the data that comes out of publicly funded research grants. Often times, large institutions delay in sharing their data. That’s not cool, so to speak. We also need to look at all sides of the problem. We can’t just focus on prevention and treatment of curable cancers. If we don’t understand how cancer metastasizes then we are missing vital pieces of the puzzle and won’t have a clear picture on how to control metastatic disease. If you’d like to help Team Judy support metastatic breast cancer research grants you can donate to our crowdfund page. 100% of what we raise goes directly to the labs of researchers at the Masonic Cancer Center, University of Minnesota.
I last did IV chemo in January. I was getting tired. Tired in a way only someone on chemo gets. Worse even than those first few months of living with a new baby or soft puppy. My body needed a break and so did my mind. So, my onc and I talked and agreed I’d take a short hiatus. I had places to go and people to see. And it has been wonderful, truly wonderful and sad all at the same time. Wonderful because I soaked up the sun and buried my toes in the sand with people I loved. Wonderful because after a month I realized I could do two or three errands in a row instead of hoping I could get through 1 short errand. Fantastic, because I started enjoying my independence again, driving myself places, staying up late enough to see the stars and the moon. But sad too, sad because it highlighted how fatigued and worn out I really was feeling. Sad because even after two months I still wasn’t feeling “normal” whatever that is. I went to pull all the greens out of the pots and found myself sitting down and crying after 3o minutes. Nope, still can’t do that all at once. I need to plan for short runs of physical activity. Even with going to the gym and trying to keep up my endurance and strength. It’s one of the hard parts about stage IV cancer. There is no end. There is no real “getting better” and going back to “normal”. It’s a constant cycle of scan, treat, repeat and sometimes grief sneaks in. Sadness at the things you were once able to do and can’t. Sadness at the loss of a job, sadness at the loss of strength and stamina.
The wonderful vacay is about to end. It’s been sweet while I had it. Long enough to grow back some eyebrows and eyelashes and a bit of hair. Do not underestimate the importance of eyebrows and eyelashes! Love those two things! Monday will be a day of scans, bone scan, and CT scan of my abdomen and chest. Once again hunting down those cancer cells. Lobular cancer is a sneaky thing. Instead of growing in clumps it’s sends long branches out searching for organs and other essential body parts. It’s hard to find on scans sometimes. I have had more pain and that lets me know things are happening somewhere. My tumor markers are going up, but not horribly, considering I’ve been on a break. I’m glad I did it. For me, this is about balancing quality of life with treatment. Tuesday I’ll check in with The Wizard and knowing him, I’ll be back in my blue chair that very day. Still not sure which chemo we’ll try this time. We’ll wait to see if I’ve had significant progression and what that looks like. I’ll let you know. I’ve also got more to say on my weekend at the LBBC conference and all the other things I signed up for during my respite.
I pulled up the blog and noticed a few stunted attempts to write, but the words have been trapped. I guess that’s as good a definition of writer’s block as any. It’s not that I don’t have things to say, it’s the fact that even I get sick of hearing about cancer. The reality is no matter how much I try to not make my life about cancer it takes up a major portion of it. Whether its scans, doctor appointments, labs, treatment days or recovery days cancer is running a lot of our family life right now. Sometimes it makes me feel guilty. So many cancer patients say “I’m not going to let cancer take over my life.” I don’t think I know what that means, not really. Does it mean I pretend I don’t have mbc? Do I pretend this isn’t having an effect on my ability to function? It was depressing me trying to figure it all out because no matter how hard I try cancer is slowly taking over a lot of my life. This is what I’ve decided, cancer and I have to try and live together. It takes too much energy for me to push it out entirely. I find myself fighting back valid emotions like fear, depression, anger and sadness. Cancer is here to stay. I’m going to have to adjust to the fact that it is taking up a bigger and bigger chunk of my life. I actually feel better acknowledging that. It doesn’t mean I’ve given up living. It does mean that when I have those moments of grief over the loss of something in my life I can acknowledge it, feel the emotions and then move on without fighting to hold them in. There are these small, poignant, so sad times when I realize that I’ve lost another inch in hanging on to the old me. There were times last August when even though I pulled it together and went on the boat there was more discomfort than joy. I missed a lot of beautiful sunsets. I was out late last week and realized it’s been a very long time since I’ve even seen the moon. I’m usually in my pajamas by 5 or 6.
The holidays have been hard. It’s been difficult to not compare where I was last year with where I am this year and then of course, wonder about next year. Will I have the energy to cook and host next year? Should I label ornaments before I put them away? Take pictures of how I decorate and put them in the boxes before I pack the stuff?? I was worn out like crazy this Christmas, but I was grateful, grateful, grateful that I could do what I did. I learned that instead of a good nap helping me feel better, now it takes more like two days in my pjs. I’ve said this so many times, but it’s true; I have to keep finding my balance while my center of gravity keeps moving. It seems every month brings a “new normal” for me and I have to adjust my expectations once again. ” Live in the present, live in the present, live in the present.” That’s the only way I’ve found to have peace with stage IV cancer. Do what I can when I can and don’t beat myself up if I can’t do more. There are times when I have to acknowledge that my body is tired, oh so tired and I have to give in. Cancer fatigue stinks! You don’t get a good night’s sleep and wake up feeling better. You wake up still feeling tired. You take a shower and rest before you can get dressed. It takes you an hour to do something that once took 30 minutes and you consider doing laundry a good workout because there are stairs involved.
As 2015 leaves us and 2016 arrives I still have hope for the new year. I’m learning that hope means different things while living with mbc. This year I hope that I’ll have more good days than bad. I hope I have more time with the friends and family I love. I hope for more laughter, and more great memories. I hope I don’t get my inaugural hospital stay, that I won’t need a blood transfusion and that the cancer stays out of my internal organs. I hope Abraxane keeps working and that I can take a few months off from it and enjoy the break and regain some energy. I hope I can keep finding my balance when I fall and that I have the grace to lay down and rest when I need it. I hope for strength and courage and the ability to stay grateful for all the wonderful moments I still have in my life. I hope I’ll laugh more then I’ll cry. I hope I keep having hope.