Life with cancer is like an emotional roller coaster with twists and turns where you least expect them. This week has been especially emotional and challenging. I think we have probably been through worse, but some days have just been harder than others. Tuesday was a chemo day and included an appointment to see my oncologist for an exam. It also included a radiation simulation appointment down town at the hospital to map out the radiation plan, but I should go back a few days. Over the weekend I had a scheduled MRI for my right arm to help assist with the planned simulation. I noticed a pain in my chest during the day leading up to the MRI. I chalked it up to a little anxiety going into the 1.5 hour scan. The pain continued and was growing more painful with each day. By Tuesday and my scheduled appointment, the pain was high in the 8-10 range. I knew deep down that something was wrong. I have learned to recognize some of the tugs my body gives. Plus pain that comes quickly and gains momentum quickly is never a good sign. I think both Steve and I had a feeling Tuesday would be a hard day and Steve took off work to go with me without me really coming out and asking him. We both had that “sense”.
We met with Dr F and the exam started pretty routinely. We talked about various side effects from chemo, discussed the current plan to treat the right arm with radiation, and just had general discussions. The routine of these exams are discussions/concerns, physical exam, then ends with discussion/concerns and action plan. When the Dr came back in for the second discussion he laid it all out there.
1. The Chemo isn’t working and we will not be treating you today
2. The pain in the clavicle/chest is cancer and it is active (location confirmed on pet scan)
3. Our new focus is getting radiation lined up and it would include the right arm and the clavicle (if we could get in touch with the radiation oncologist before the afternoon simulation, which he did and she hustled)
4. Increased my long acting pain medicine by significant mcgs and my breakthrough pain meds
It was just very matter of fact, but with the normal compassionate way of all the tough conversations we have had with Dr F. We are still waiting on the geonomic testing but there isn’t a plan to try another chemo right now. Have we hit the end of the road with chemo? Only time and geonomic testing will tell.
It’s always hard to go into a scheduled treatment to learn that there will not be a treatment. It’s such a letdown because emotionally you have prepared for that day and the days ahead with side effects. In the back of your mind you know that lack of treatment means cancer is likely to keep progressing with no end in sight. A lot of emotions and anxiety seem to follow.
Ironically, I had just mentioned to Steve a few weeks ago at the start of this new chemo, that I would eventually get to a point where I would say “no more chemo’s”! I wasn’t sure when that time would come but it’s so hard to yo-yo from chemo to chemo, hoping for stabilization or better yet regression. At this point I have tried several chemo’s and only one combo gave me “stable” scans. As I processed the latest information over the past week I realized that Dr F made the decision to stop chemo for me. I didn’t have to make it on my own. A blessing in disguise perhaps?
I have felt cancer moving around my rib cage for several days. I don’t know if it’s normal to be able to feel your own cancer. I don’t even know how to describe the feeling besides it being painful, it is also a strange sensation that I get. Maybe it’s because I am so thin or I am more open to feeling those tugs in the body. I can normally point right to a tumor that is causing pain. I will point to a place and say, “here is the pain” and they will confirm on the PET and say,” yup there is a tumor(s) right there”. I am so grateful for pain management; I can’t even begin to imagine the pain in my body without it. I went months without being able to control the pain and those were some of my worst months. Now that we have some control I worry that I am missing painful places that are signs of advancement or places that may benefit with a hit of radiation. It’s a catch 22. Either way, cancer isn’t slowing down at this point. The bigger issue is my quality of life which includes feeling free of pain.
It has been kind of an eye opening week. I am not sure what I was looking for in terms of comfort. There really isn’t anything anyone can say or do to make this situation better. We can’t change it into rainbows and butterflies. But I felt a little let down and I felt more alone and alienated then I have in a while. I was not really being mentally positive myself which is part of the problem. Steve was surprisingly positive after my appointment while I was being negative. The only positive thing I expressed was that “at least my hair would grow back”. Nothing anyone said made me feel better. I keep thinking, “do you even realize what this means”? Then something occurred to me. Why was I expecting anyone to have the right words? Why was I putting that responsibility onto others? People really don’t know what to do or say. I think sometimes I just need to hear “this just sucks” or “screw cancer” and less of “you are so strong” or “you got this”. For me cancer is at times my entire life, no matter how positive I am or how busy I make myself. But at the end of the day, I can choose to be happy despite my situation or I can choose to cry and be angry. I probably need a healthy balance of both happy and sad. What people say to me or in some cases don’t say (the lack of communication/empathy) isn’t important when you know they love and support you no matter what. Now, for the negative people who are insensitive, cause drama and/or don’t truly care about you, good riddance and good bye to them!
We met with Dr F and the exam started pretty routinely. We talked about various side effects from chemo, discussed the current plan to treat the right arm with radiation, and just had general discussions. The routine of these exams are discussions/concerns, physical exam, then ends with discussion/concerns and action plan. When the Dr came back in for the second discussion he laid it all out there.
1. The Chemo isn’t working and we will not be treating you today
2. The pain in the clavicle/chest is cancer and it is active (location confirmed on pet scan)
3. Our new focus is getting radiation lined up and it would include the right arm and the clavicle (if we could get in touch with the radiation oncologist before the afternoon simulation, which he did and she hustled)
4. Increased my long acting pain medicine by significant mcgs and my breakthrough pain meds
It was just very matter of fact, but with the normal compassionate way of all the tough conversations we have had with Dr F. We are still waiting on the geonomic testing but there isn’t a plan to try another chemo right now. Have we hit the end of the road with chemo? Only time and geonomic testing will tell.
It’s always hard to go into a scheduled treatment to learn that there will not be a treatment. It’s such a letdown because emotionally you have prepared for that day and the days ahead with side effects. In the back of your mind you know that lack of treatment means cancer is likely to keep progressing with no end in sight. A lot of emotions and anxiety seem to follow.
Ironically, I had just mentioned to Steve a few weeks ago at the start of this new chemo, that I would eventually get to a point where I would say “no more chemo’s”! I wasn’t sure when that time would come but it’s so hard to yo-yo from chemo to chemo, hoping for stabilization or better yet regression. At this point I have tried several chemo’s and only one combo gave me “stable” scans. As I processed the latest information over the past week I realized that Dr F made the decision to stop chemo for me. I didn’t have to make it on my own. A blessing in disguise perhaps?
I have felt cancer moving around my rib cage for several days. I don’t know if it’s normal to be able to feel your own cancer. I don’t even know how to describe the feeling besides it being painful, it is also a strange sensation that I get. Maybe it’s because I am so thin or I am more open to feeling those tugs in the body. I can normally point right to a tumor that is causing pain. I will point to a place and say, “here is the pain” and they will confirm on the PET and say,” yup there is a tumor(s) right there”. I am so grateful for pain management; I can’t even begin to imagine the pain in my body without it. I went months without being able to control the pain and those were some of my worst months. Now that we have some control I worry that I am missing painful places that are signs of advancement or places that may benefit with a hit of radiation. It’s a catch 22. Either way, cancer isn’t slowing down at this point. The bigger issue is my quality of life which includes feeling free of pain.
It has been kind of an eye opening week. I am not sure what I was looking for in terms of comfort. There really isn’t anything anyone can say or do to make this situation better. We can’t change it into rainbows and butterflies. But I felt a little let down and I felt more alone and alienated then I have in a while. I was not really being mentally positive myself which is part of the problem. Steve was surprisingly positive after my appointment while I was being negative. The only positive thing I expressed was that “at least my hair would grow back”. Nothing anyone said made me feel better. I keep thinking, “do you even realize what this means”? Then something occurred to me. Why was I expecting anyone to have the right words? Why was I putting that responsibility onto others? People really don’t know what to do or say. I think sometimes I just need to hear “this just sucks” or “screw cancer” and less of “you are so strong” or “you got this”. For me cancer is at times my entire life, no matter how positive I am or how busy I make myself. But at the end of the day, I can choose to be happy despite my situation or I can choose to cry and be angry. I probably need a healthy balance of both happy and sad. What people say to me or in some cases don’t say (the lack of communication/empathy) isn’t important when you know they love and support you no matter what. Now, for the negative people who are insensitive, cause drama and/or don’t truly care about you, good riddance and good bye to them!
Erin, I have been praying every night for a miracle for you so you can have many years with your family. You are right....I don't know the right words to say...except that I love you forever! I wish I had a machine that I could hook you to and suck all that nasty cancer right out of you! You have been a blessing in my life ever since you and Steve got together. The positive attitude and unending strength you show is a goal I can only hope to accomplish. If I can do anything now, tomorrow, later; just call me and I'll be there. Dickie and I love you to the moon and back!
ReplyDeleteThe snow was beautiful putting a clean white cover on all the mud that has been in our yard from the rain. Never stop seeing the little blessings God sends our way!
ReplyDeleteErin, I know we have only spoken a few times but you, Pushing Pink Elephants, and your ongoing story have touched my life. Cancer does suck and it is terrifying. I totally agree that hearing “you are strong” is like fingers on a chalk board sometimes. Even on our best days it is hard to feel strong. I will continue to pray for you, Steve, and your precious daughter.
ReplyDeleteKristine G
I’m so sorry, Erin! Sometimes there just are no words . . I love you 💕
ReplyDeleteDear Erin, Steve and Charlotte, Bring a cooler full of snow in and on vinyl tablecloth build a snowman with Charlotte. Wear your mittens! Stay warm. Enjoy the cocoa! Use MANY marshmallows. Move your TVs into same room. Football needs no sound. Get on the couch and snuggle together. Thank you for sharing.
ReplyDelete