I had my post-op appointment on Tuesday and it went well. My Oncologist said that the cancer is still there but that it is still stage 1, class 1, which means that it is not growing but it is not gone. Even though I am taking the highest dose of Megestrol and I have a Molina IUD, which has the highest level of hormones, 6 months is a short time to expect my body to eradicate the cancer in my body. Even though I believe in miracles, she and I agree that the cancer being gone that fast, would be a miracle.

For some reason the scale at my oncologist office will not work when I am on it. They have assured me it can manage my weight. I tell the nurses it is probably my magnetic personality. I see doctors frequently so they always ask me when I weighed last and I tell them. This time it was at my surgery, about 3 weeks ago. The nurse looked it up and I haven’t lost or gained anything. I am holding firm, despite not exercising and not really watching what I eat more than my normal restrictions, however I do drink a gallon of water or unsweetened herb tea almost every day. My doctor gave me the look when I told her that I haven’t been exercising. The answer that I had had severe cramping and bleeding until a few days ago was a good answer until a few days ago and I know it. She reminded me that if the drugs and IUD don’t work I will require a full hysterectomy and that is a dangerous surgery at my size. I know this and getting any weight off or at least being stronger would help me in many ways. I know this too.

Change can be a Miracle

As many of you know I have worked hard to be committed to my workouts. These surgeries every 3 months have thrown a wrench in my commitment. However that doesn’t mean that I can’t keep drinking 4 liters of water or unsweetened herb tea every day, which I do faithfully, only missing very rarely and eating well and balanced.

I started exercising Wednesday. This morning was painful but I feel better after my second day of working out and I know that I will continue to feel better as I get stronger, eliminate the extra water and waste in my body and build muscle. Losing weight would be nice but I have learned with this body to be happy with being strong. If I lose weight that is a bonus. Although I would like to be smaller for many reasons: I don’t fit in many chairs, traveling is hard and if I fall, my wife can’t lift me, even though she lifts weights and is stronger than many women, and I know she worries about that…If I need a hysterectomy it will be very dangerous at this size. I do know that, but I can’t worry about that. There is risk in everything and I have made many wellness changes in my life and have committed to continue to do so and that is all I can do.

Each day I have chosen to move my body on purpose has been a miracle because there was a time in my life that I did not do this. I am thankful that I have been able to commit to myself to be as well as I can be, in spite of chronic pain and illness. This is a miracle in my mind. I thank God for His help all the time. I remember when He has coached me and He still does. He knows me best.

Struggle can be a Miracle

I have been struggling with my Neurologist since I began seeing him on January 27, 2022. I thought I misread him, that maybe once I got to know him better that I would be able to work with him but his ego never got smaller. At our first visit he put my other doctors down and told me that doctors that aren’t helping should be fired. He had already decided my diagnosis before he saw me and began treating me for migraines immediately. I agree I have migraines but I went to him for the pain in my face that makes it hard to speak sometimes. This pain makes it hard to drink, eat, floss and brush my teeth, even washing my face can be painful and when it is really flared up, it can wake me up at night. He told me at my first appointment that all I had to do was email him when my face began acting up and he would prescribe what I needed but when I emailed him, he didn’t read my messages. All I got was apologies from his medical assistants. I left him with 3 prescriptions, 2 for every day and 1 for big migraines which I take, but when I have asked questions about these, I have got no response. I have called. Karen has called. No one calls back. So I finally decided I wanted a referral to another neurologist and sent an email asking for one. Still no response. Even when both I and Karen called.

Since I was in the building on Tuesday, I decided to stop by there. I felt so bad for the young lady at the reception area. She looked petrified when she realized who I was. I was not angry but I was direct when I told her my goal was to change my appointment on the 22nd to be with a different neurologist before I left there that day. She seemed tongue tied and went to verify information with someone. She thought I would need to ask my primary for another referral for a neurologist. I had the email penned before she came back but I deleted it when she let me know there was one neurologist that could take my case, if she chose. She would be in the office later. She pointed to her card, but I chose to not take it. I didn’t want to appear to eager. Instead I looked at her with honest eyes and said: I just have this pain in my face that he said he would help me with and he is ignoring me. I just need help. Her stress softened. I think she understood, I wasn’t trying to be a pain.

I am still waiting to hear from them. They do not communicate anything like my oncologist’s office.

Communication is really important to me; vital. I was ignored a lot in my life and I won’t be ignored anymore. Especially when it comes to doctors who I have hired to help me be healthy. The struggle I have had with this neurologist is also a miracle because it has forced me to stand up for myself and yet be fair and direct and not violent. To me this is a miracle. In the way I was raised the only way to be heard was to freak out but that is not healthy for me or for the people that are not hearing me. I have communicated my needs and expectations. I have heard their response. I know that if they don’t choose to serve me that I will be contacting my primary about a referral outside of Legacy next week and I am ok with that. In my mind that is a miracle.

Loving Relationships are a Miracle

Especially with gas prices where they are at, we wanted to make sure to stop by and hug Jamie Holloway before we left Vancouver. It was good to see her and deliver some treats I bought for Nicholas, her fur-baby. Even though she is only breathing with one lung and she started steroids that day, she looks pretty good and Yelena, her caregiver was there. She is a great lady. It was a nice visit.

I love when I get to see Jamie because I know I am with someone that gets me. We don’t even have to speak but our hearts do. Especially at this time, I know we hold each other up. She has encouraged and taught me how to fight for my wellness and I know I encourage her too. I have learned to ask more questions than to offer her advice. No one knows how to live in a chronic body better than a chronic person and what works for Jamie’s body doesn’t necessarily work for my body. She and I have been learning to live as well as possible in our chronic bodies for 8+ years each (she longer than me) we are not newbies. That doesn’t mean we can’t learn more but we do know more than a healthy person. Healthy people are blessed in a way they can’t imagine.

The healthy people around us, know something that healthy people that don’t take care of chronic people would never know. You have different conversations with each other. Karen and I talk about my death more. We talk about pain more. I may not know how to get rid of mine, but I know how to help her with hers. I know she worries about if she dies first a lot more than she tells me. That too is part of a loving relationship.

Tuesday was a great day. Wednesday was a quiet day. To be honest Mahjong was most of what I accomplished. I have slept late today and I know a nap is in the future as well but I am glad to have got my workout done. I have some cleaning that needs to be attended to as well.

I hope your day is blessed!

Feel free to leave your comments below!

My name is Summer. That is how you can call me. I hope that I am a blessing to you. I am not perfect. I will fall again. But I am forgiven.

Do you know Jesus? Do want the Holy Spirit to fill you and give you understanding and salvation? Ask Him. Want someone to pray with you? Contact me.

If you would like to know Jesus as your friend, but want to make this amazing commitment by yourself please pray something like this:

Thank you Jesus that You are the Son of God, the God that created heaven and earth. Thank you Jesus that You came to earth in the form of a man so that You would be able to empathize with my humanity. Thank You that You did this in order to fulfill the promises You made at the foundation of the world.

I realize that I am a sinner and do things that hurt myself and keep myself away from you. Thank You that You died for my sins so that You could defeat death and bring me into Your life. Please forgive me.

I ask You to be Lord of my life. I ask you to heal my hurts and show me what my new life, empowered by You looks like. Thank You for Your mercy.