Sunday, January 13, 2019

Another one bites the dust


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!       
              
PS: Today we find ourselves with a beautiful snow day. It snowed all night and we woke up to a blanket of white snow, perfect for snow balls. Such an amazing day to snuggle in and watch the snow fall, oh and cheer on the EAGLES!! We are actually a Ravens family but we both grew up with the Eagles so we will be cheering for them today. In all honesty I will most likely be watching Hallmark movies and Steve will be watching the games :o) 

Enjoy the day where ever you might be!! Xoxo  

Friday, January 4, 2019

Happy New Year!!!!


Wow, another year has come and gone. In the busy time between November and December with advancing cancer, new chemo, new side effects, hair loss and just holiday life, the new year was suddenly here. I even helped get a group of friends together for a NYE celebration at an amazing venue and it still seemed to come out of nowhere! Holy crap its NYE ahhhhhh. 

I love NY’s more every year. Mainly because I am still here to ring in another new year. But I always feel like it’s a clean slate and a fresh start. It’s a time to take a look at what’s happening in my life and around me. It’s a time to re-focus and commit to something new, good and positive. I am not making resolutions per say this year. But I do have some goals:
1.      be more present in everyday
2.      meditate regularly
3.      stretch my body daily
4.      STOP procrastinating (its become an issue)
5.      Take a deep breaths and count 1, 2, 3 before reacting

We also started a daily gratitude/thankfulness jar. Every day we each write one thing we are thankful for in that day. When we all three have dinner together we also do a “what’s your new and good”. What new or good thing happened today?  We started that last year and it’s been fun and a great positive why to end the day and encourage dinner conversations. I definitely want to keep this in the regular.

I would love to hear what you goals or resolutions are. Comment below!!   

Quick Cancer Update:

This latest chemo is going “ok”. After the first treatment my ANC really took a hit which required a two week break. They reduced the dose by 50% and I was able to get treatment for the two weeks in a row as planned. I am on an off week this week and then hopefully we are able to do another two week plan. I feel pretty run down after treatment. But it took me some time to get use to the previous drug and for my body to adjust. I am hoping this will be similar and my body will adj. I have been trying to really listen to my body and rest when I need to which is more often. The good news is nausea isn’t nearly as bad as the last drugs. It’s more of an issue with fatigue and low energy.  

I am having a newer issue with my right shoulder/humerus which does have cancer in the bone. I started having pain right after my lymph node surgery back in Nov. I think the position they put my arm in during surgery really did some damage. It’s been well over a month and I am still in quite a lot of pain in this area. I have and MRI scheduled and then a radiation simulation planned. We are hopeful radiation to the area will reduce the pain and return some of the mobility lost. This was a good reminder for me to be really vocal about my bones being compromised. I sometimes just assume everyone at Hopkins has read the details of my stage 4 cancer and know the extent within the bones. I need to be better, especially when I am being put under, to tell the entire team in the OR to be careful with placement. I can easily sustain bone fractures if we are not careful. I learned this lesson learned the hard, but lesson learned. The radiation treatment on this area should be easy with little issues. I already had similar treatments on the left arm so I know what to expect. I have an AMAZING radiation oncologist who is just such an amazing person. I love her and all the staff at Greenspring. She is on top of my case and is ready to take action with limited notice. I had not seen her in probably 10 months but she greeted me with a huge hug and genuine tears. Although we were there to talk about my shoulder she had read my latest brain scan and was so happy to see no cancer progression. Her brain radiation plan saved my life and I know 100% I would not be here in this capacity today without it. Yes, it took a big toll and was a challenge to recover, but there is no doubt her plan was effective for my cancer and my quality of life. I am so thankful and grateful to her for challenging me on my reservations because I was not going to go through with brain radiation. It is so important to have a good team when dealing with cancer regardless of what stage you may be.  

I hope everyone had a great holiday and a very happy new year. I had a great time with friends ringing in the New Year Monday night. We danced and celebrated the end of 2018 and the start of 2019. There were some tears and high emotions as we struck midnight. Why is the song “Auld Lang Syne” so emotional? It sure hit my heart strings and I had a hard time keeping it together. Steve accidentally caught a video of me and my bestie Erin right at that time….it’s a tear jerker.      

It’s going to be an amazing year; I can just feel it in my bones!! Embrace this year and make it the year you do something great. Do something good, positive and rewarding for yourself!! Live the life you were meant to live, love and embrace the ones you care about every day!  

Shine Brightly, Live Happily & Smile!

Erin   
Pink Hair for NYE