It’s hard to start with that title because right away you are already thinking “oh no! What can I do to help and how can I fix it for you”. I always win on the scale of all Bad Day scales. It has been a bad day, a hard day, a down day. I wrote about this once before with my Colors blog post. I’ve gotta say though, bad days are getting harder. I hate writing about them because I do suffer so strongly with the “Good Patient” syndrome, the “I just don’t want to make it harder for anyone by venting” syndrome.
Today I’m going to practice venting. I don’t do it very often because I really do believe we can choose how to live each day, but I know that doesn’t always work. We all have crap days, and the more honest about those days we are, the more we can help others who have crap days.
It starts when I get out of bed to go the bathroom. Sometimes I dream about just getting up and moving freely. I’m sure people who are paralyzed must do this. I think I have my long hair back for a second and make a move to brush it off my face, I go to stand up and then I remember it all. My whole torso hurts with the strain of standing up. I can’t stand up straight, no matter how hard I try, and when I go to take a step my right hip gives just a bit, but then my left hip hurts as I shift weight. I hope this is not what feeling old feels like. But, then again, I have to love the dark humor. I’m living to 57, but I know what it feels like to be 115, so who’s saying I died before my time?These last few days have been tough. I reached out to pick up my full glass of water with my arm straight out and pulled a muscle somewhere in my shoulder. It honestly hurts so bad that I’m having trouble making certain movements with it. I can’t hold it out straight from my body or lift it straight out. I’m not sure if I tore it, or pulled it, but I did something to it. There is the realization I can no longer walk more then 20 feet without a walker, and I need a wheelchair for longer distances. Then shame of all shames, I step on my toe so hard with my walker that I’m pretty sure I’m going to loose a toenail out of it all. See, you squirted wine or beer, or something, out your nose after reading that one, I know.
I say, “I want to go into Town” to get out of the house and out of this damn bedroom and bed (which I honestly love very much). But, by the time I’ve washed my face, brushed my teeth and gotten dressed, I have to lay down on that damn bed once again, because it hurts too much to keep standing. Of course, the other downer here is that I’ve been using a walker to get from one place to another this whole time.
We go to a beautiful restaurant and we sit outside and soak up the sun and beautiful day, but then I start crying on the way home because suddenly I realize that what I really want, is to be sitting on the boat drinking margaritas and listening to Steve’s old country songs. I get mad later as he leaves to go fishing, I suddenly feel like a carton of milk being put in and out of the fridge and Steve is just dumping me back in the house and leaving to do fun things whenever he wants.
How stupid is this all! But, the feelings are real. I’m feeling so lonely, even though I’m surrounded by people who love me. We must need to do this as a part of dying. I’m starting to feel this weird separation, and sometimes while I’m sitting with others, I suddenly see the room without me in it. I have to, or I am, starting to let go. I’m starting to feel the separation of spirit and body. It’s hard to explain. But I can feel my cells have stopped growing normally and are slowing way down. My body is starting to choose to stop rejuvenating each day. Crazy to say I know, but it’s what I think about and what I’m feeling. My hair isn’t growing as fast and my nails have slowed way down. And don’t you dare tell me to keep fighting, or to try harder. I have tried my best, but this was always going to end one way, with me dying. The reality is this disease is terminal, not chronic and definitely not one of the “better” cancers to have. Especially with 114 people dying from it each and every day. This is one of the reasons funding research is so important. Thinking about research dollars just adds to my bad day. With only 2-7% of all breast cancer dollars going to metastatic breast cancer research. Calling metastatic breast cancer one of the easier cancers is just a side effect from the in your face pink washing days. Trust me, no cancer is an “easy” cancer to have. They all stink big time.
Admitting the time is getting close takes a little bit of bravery. Being brave doesn’t mean you aren’t scared to death, ( no pun intended) I’m just a person trying to figure this out as best as I can.
Tomorrow will be different. I’ll wake up hurting, but my attitude will be a little better. I am sleeping well and starting again in the morning is always a plus. I also have the help of some antidepressants. Another area we don’t talk about enough. We live in an unbelievably difficult world, most of us are going to need some help at some point. And if you don’t believe that is true, then you really do need the drugs.
I dig out my old friend, Gratitude, because I can be thankful for being a crabby jerk. Thankful, because I know feeling like a crabby jerk is real and those hard emotions have to be felt and endured. Grief is becoming more of a daily occurrence. The loses that I’m feeling are becoming bigger and harder. I’ve learned I have to let myself feel these crap emotions. I used to freeze and go into deep depressions during parts of my difficult childhood. The trauma was so real back then, the only way to survive was to not feel. But, I’ve learned through lots of practice and therapy, that you must lean back and float into all of these hard emotions. Let them pass through you, but, feel them all, you must. Otherwise, you risk becoming a hard shell of no emotion.
The other thing about dumping my feelings is that it’s harder when you’re dying. You are already hurting so many people by dying ( and geez! does it have to be taking so long!) that you don’t want them automatically racing to fix it all. I already feel so grateful and yes, overburdened, with the help I know I can never repay. I remind myself a hard earned lesson, how would you feel and behave if it was someone you loved and not yourself? Yea, right, check feelings of guilt. It usually takes me a few tries. But honestly, trying to find, yes, struggling to find, my reason to be grateful does the trick on everything else those handy drugs failed to manage.
I’ve started saying this meditation every night before I go to sleep, it’s from Where Healing Begins by Mishkan R’Fauh.
Meditation on Healing
When I panic, God, teach me patience, when I fear, teach me faith. When I doubt myself, teach me confidence. When I despair, teach me hope. When I lose perspective, show me the way- back to love, back to life, back to You.
I’ll meditate with this and say it many times tonight with the hope that tomorrow will be a better day. Today was just one of those bad days. Even writing this blog has helped me to start feeling more hopeful. Thank you for letting me vent. I’m so sorry it hurts you and makes you cry. As my friend Kelly Grosklags says “we experience grief because we feel love. And I do love you. That’s why leaving is going to be so hard. It’s grieving the loss of those I love and missing out on the wonderful future that’s to come. Damn I would have been an incredible grandma, and damn I miss my old self.
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.
The last two months in Cancerland have been challenging. The week before Thanksgiving my pain levels increased dramatically. It is still hard for me to process how quickly I experienced such a dramatic change in my quality of life. My back started to hurt a lot. I experienced spasms every time I tried to stand or get up out of a chair. I couldn’t sit very comfortably either. I was able to get somewhat comfortable if I was in bed with my back elevated and had pillows under my knees. There was no real injury. I think that the levels of cancer in my bones and spine grew to such an amount that nerves started to become involved and I started to hurt more.
Currently, my whole torso is painful and I’m still in pretty much the same place pain wise. Both sides of my rib cage are extremely tender and it hurts to take a deep breath. My back is hurting everywhere and I have issues with trying to stand. If I stand for more then 15 minutes it feels like my spine has disappeared and the muscles in my torso are straining to hold me up. Thankfully, I see the Nurse Practitioner who handles pain management and palliative care in our clinic tomorrow. I’m hopeful we can come up with a pain management plan that will work. I know I’m also going to have to get better at taking pain meds and being honest about how much pain I am in. We have such a problem with opioids and addiction right now in our society. I think that once again, we keep trying to treat it one way or the other when there are lots of gray issues in between. There’s a whole other blog post on the number of times I’ve almost been denied pain meds. It makes me laugh a little because part of my problem is I try so hard to not take too many. I’ve also been trying CBD in different forms. I’m hoping to find a way to have that be helpful also.
I had scans the end of November which showed innumerable mets in my spine, pelvis and hip area. The cancer has grown quite a bit more from my scans just a month before.
I did see the High Wizard and he consulted with my Wizard. They both reviewed the results of my Foundtion One testing. I don’t have any mutations that are unusual. The course of treatments we’ve been doing have been the best treatments to use with my cancer. It’s a little disappointing to not have found a magic bullet to use, but I didn’t expect to find one either. We decided to circle back and try the CDK4/6 drugs again. CDK 4 and 6 are proteins which help to control how fast cells grow and divide. They work for both healthy cells and cancer cells. In metastatic breast cancer they aren’t working right which is what is causing the cancer cells to grow, divide and spread. CDK4/6 drugs inhibit the growth of these proteins and try to slow down the spread of the cancer cells. I’ve been on this type of drug twice before (Ibrance). You see many commercials about these drugs on TV. The women are always smiling and going about living with mbc like it’s no big deal. I really hate these commercials. They are so misleading.
This time instead of Ibrance I’m trying Verzenio. It’s a cdk4/6 inhibitor, just made by a different drug manufacturer from Ibrance. The High Wizard has had some success with people reacting favorably with one of these drugs when another one didn’t work. I’m also getting the aromatase inhibitor shots again, or Faslodex. You’ll remember the big, honking needles. So fun. Interesting fact, Verzenio is a mere $11,372.00 a month. Combine that with the shots which are about $4500 a pop and I’m an expensive cancer patient. Don’t get me started on insurance. I believe it is a basic human right. I know women who have to choose every month to keep a roof over their head for their children or take their meds.
Last month my tumor markers had increased to an all time high. If the med switch doesn’t work we will probably swing back to adriamycin. My heart has recovered from the damage that occurred previously while on it and my cardiologist feels very comfortable with me taking more then the recommended life time amounts. Once again we’ll be balancing heart damage with beating back crazy, fast growing cancer cells.
On the good news side of things, whatever spot was in my liver before doesn’t appear to be actively growing right now. It’s just the cancer in my bones which seems to be growing crazy fast.
I’m due to get tumor markers tomorrow to see if this course of treatment has helped at all. I don’t want to be discouraging, but based on my pain levels I’m going to guess it’s not working. I’ll let you know.
It’s been a discouragingly hard and wonderful last few weeks. Hard because the side effects and pain haven’t been fun. I’m throwing up more then I ever have since having cancer. The most common side effect with Verzenio is diarrhea. Yep, they don’t show Alice smiling through that one in the commercials. Couple that with constipation from increasing pain med dosages and my poor colon is wishing for a break. Also, at times the pain has been almost unbearable and I’ve had to fight back the fear that I won’t be able to do this. I’ll get help with that tomorrow. I have faith in my med team and know that they’ll do whatever they can to help manage my pain. I just have’t had a chance to get in there and talk through a plan yet.
I wasn’t able to cook any of our holiday meals. But it was absolutely wonderful to have my families help in doing it all. They did a great job of suffering through me barking commands and they did ALL of the dishes! I did still manage to “flame the sauce” for our Christmas Beef Wellington. It made me happy to know it all was fantastic and they did a great job. It means traditions can carry on without me.
I’m not able to drive anymore. I’m on way too many pain meds, and I’m in so much pain that it’s pretty difficult. Once in awhile I’ll hold off on pain meds to drive one mile up to the corner, but I can’t and don’t do that very often. It’s really difficult to loose that freedom.
It was heartwarming to have all of the kids and other family home for Christmas. But, it also was heartbreaking knowing how much heartache I was causing the people who love me when they saw how much pain I was in and how difficult it’s getting for me to move. I wish I could hide that one better and protect them more.
I say the last weeks have been wonderful, because once again I’m overwhelmed with gratitude at the amazing and loving friends and family I have in my life. People have been driving me to PT appointments, they take me to run errands, they’ve been bringing us meals and put up Christmas decorations for me. They take me to the doctor and lab appointments. It’s been wonderful. But it’s hard too. I just keep reminding myself that I would be doing the same for them if things were reversed. Being able to accept help is a lesson all of us need to learn. It makes us vulnerable, but also teaches us to trust the people who care about us. It teaches us humility and gratitude. Both qualities that I’ve found are important.
This is going to be a challenging year. It may well be my last. In fact I’ll be totally surprised if it isn’t. We don’t talk about death enough. It’s funny how afraid we can be of something that is going to happen to every single one of us. I’m going to talk about it. I’ve already started talking about it with the people who love me. I don’t want to be unprepared and I don’t want the people I care about to have to be worrying about what I want or don’t want because I didn’t talk to them about it. Just because I’m going to talk about dying doesn’t mean that I’m not going to do everything I can to not die. I want to find that balance. The realistic optimist in me needs to plan and acknowledge whats likely to happen. But, the optimist in me will keep hoping that the treatments will work and I’ll have some more time to spend with those I love.
Do me a favor this week and go move your body and enjoy being able to to it. Take a long walk and be proud of your body for moving and getting you around every day. Relish the fact that you can get out of bed pretty easily and make it to the bathroom when you need too. Enjoy a glass of wine for me and a night out with people you love. (I’m so sad that wine is just not tasting good.) Have a donut in moderation and then eat healthy too. Be happy this week and be kind. Buy someone’s coffee in line behind you or help a stranger. Give something useful to a homeless person. Grab some socks at the dollar store or some good protein bars and keep them in your car to hand out. If you feel like donating then donate to a cause that means something to you. Make a positive difference in the world this week!
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.
The last 5 months I’ve been busy enjoying a break in harsher treatments. I didn’t say I wasn’t treating, just doing a course of treatment that for my body, is fairly easy. I went back on Ibrance, along with a side of my favorite buttocks enhancer, Faslodex. I’m also still on Letrozole, which is an aromatase inhibitor.
My tumor markers have been slowly climbing since last September. Scans last November also showed mild progression in my bone mets. Since I wasn’t having more pain and still felt pretty good, I decided to keep going with the current meds.
April’s scan told a different story. A fair number of my bone mets had almost doubled in metabolic activity since November. Time for a change in treatment.
Two weeks ago I started my new treatment protocol. I’m taking 3 different drugs. CMF for short, or to be technical, cytoxan, methotrexate and 5 FU. ( I truly do love that FU.) It’s an “oldie but goody” treatment protocol. One of the meds is an oral chemo. I take 7 pills once a day for 14 days. On day 1 and day 8 of my treatment cycle I go into the clinic for two chemo “pushes”. It’s not really an IV. Just a syringe of the meds that are pushed into my veins through my port. I receive a nice dose of steroids and anti-nausea meds to counter side effects. Day 15 thru 28 I have off and then it all starts again.
I was hoping side effects would be minimal. It is daunting however, when the handout of possible side effects is 4 plus pages. Really. Turns out nausea is the number one side effect for me right now despite all of the additional meds they give me to try and counteract it. I’ve been having the dry heaves once or twice a day. Not fun. I have anti-nausea meds I can take, but they make me sleepy and prevent me from driving and trying to get a few things done. So, I’ve been making it work until later in the day when take them.
The last week or so before changing treatments was tough. I’ve know for a month or more that I’d need to change treatments. The closer it got to May 1, the harder it was. I hate not knowing how I’m going to feel or react to a new treatment. It messes with my business of living in a big way. Anxiety and fear ran the show the week before my appointment date though I tried to reign it all in and stay focused in the present. I searched hard and kept missing the balance point of peace known as Now. I fell on my face often, with some face plants lasting longer than others. Anyway, I’ve started now and am figuring out how to live with this new one. Because treatment is forever.
I’m still amazed and frustrated with how many people there are who don’t understand that I will continually be in treatment for my terminal illness until I die. Yes, I look pretty good ~ usually. I’m still going to the gym twice a week and still trying to walk and get out and about. But that’s just what I let you see. You don’t see the diarrhea, the constipation, the mouth sores, the hair thinning, the low blood counts and weakened immune system. The dry heaves in the bathroom, the bruises from low platelets and the never ending fatigue. Honestly, the fatigue. This past “easy” stretch of treatment enabled me to run maybe three errands at once. (Yea me!!) What you wouldn’t hear or see while I’m out is my mental dialogue “Ok, you can do it. Don’t fall over, just 10 more minutes and you’ll make it home.” 4 pm has become the new pajama time. Every time I do something out at night I regret it. Why, why, why did I say yes? Oh yea, because I do love you all and cherish you and want to be nocturnal, but dang, I’m a wuss. On the other hand, THANK YOU for still asking me! For not forgetting me, for after 6 years of this crap, still asking me what you can do to help. I am so fortunate to have the people I have in my life. I appreciate you!