by Summer D Clemenson | Apr 14, 2022 | About Summer, Cancer, Life
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.
by Summer D Clemenson | Apr 2, 2022 | About Summer, Cancer, Life
My surgery went well last week. I will see my oncologist on Tuesday and I believe I will hear good news at my post-op appointment. But during this time I have been suffering with a bad specialist of another kind. I have sent numerous messages and Karen has called many times. From the very first time I met him, I have felt confused and that confusion has become bigger and turned into all out feelings of neglect. To have such success on one side of my medical issues and such failure on another has left me exhausted to the extreme.
I sought out the help of a neurologist to help me with the pain in my head that was making self-care and speaking difficult. There are times, I can barely speak and drinking water or chewing, flossing or brushing my teeth excruciating. I was told by my doctor that if these symptoms were to return I would only have to email and he would fill the prescription I need to help me get back into remission but he did not follow through with his word, regardless of my many attempts, even telling him the name of the medication that was previously prescribed by the ER doctor who helped me. He does not respond. The only response I ever get back is an apologetic medical assistant.
He asked me to journal my pain and what I do, which I did. This makes me depressed. I don’t like to focus on the same thing all the time, that leads to the same thing, that is not helpful. This is the same reason my primary does not have me check my blood sugar, because it makes me stressed out and makes it worse, and when I don’t check my blood sugar, my sugars are better controlled and at almost pre-diabetic range. I journaled anyway. I shared with him the information that although I took the meds the way he told me to and I drank a gallon of fluid a day, the pain was getting worse and the Trigeminal Neuralgia pain was coming back…and he wished me well on my surgery and thanked me for the update.
Meanwhile my beloved, sister, Jamie is getting ready for another procedure to see how much damage has been done to her lungs and if it can be repaired and I feel so helpless. I am so thankful for her other friends that can help her. I am so thankful and even jealous of her amazing team of doctors that communicate so well for her good. I want that.<
I deserve that so I have decided to fire my neurologist before my next appointment. Even though I haven’t been told my results from the MRI on my brain. Any doctor can tell me about that. Jamie suggested that I see this doctor face to face and tell him he failed but I just can’t afford to pay to see him again. We are still working on paperwork for assistance and I feel like I am drowning in doctor bills and I won’t pay to see this man again, who cares so little for me and so much for his ego.
I sent the following message to him tonight:
Dr *****,
I have thought about it and I need to make a change in our relationship. On our first consult you put down all my other doctors. You also lied: you told me sinus headaches are not real, but you gave me a magazine about migraines that said they were a type of headache. You also told me if I had any Trigeminal Neuralgia symptoms to email you and you would prescribe the medication I need. That also did not happen. You don’t even read my messages, while my other doctors do. It costs me 5% of my monthly income to see you. I need a bigger return from you to allow you to remain such a large part of my budget. I understand you probably have many clients with similar issues, if you took even a moment to say, “this is to be expected,” or something to let me know that I am on the right track, it would have helped me so much but as it is, you don’t encourage or educate me.
My friend suggested that I face you and tell you that you had failed me but I have decided that I don’t need to pay to see you again. Please refer me to one of your colleagues. Thank you….
I am going to find the doctors that want to help me be better. I plan to call and cancel my appointment on the 22nd on Monday and see about getting connected with another neurologist.
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.
by Summer D Clemenson | Mar 22, 2022 | About Summer, Cancer, Life
My surgery is tomorrow. I have spent today doing laundry, drinking water, updating my blog with posts I wrote in October but didn’t post and trying not to think about my surgery tomorrow. The last time I went through this I didn’t know what to expect and it was kind of nice to just go with the flow. One good thing is that they are allowing Karen to wait with me in the prep area and she will be in the room directly after I come out of recovery. That will be nice. I am not a person who naps or relaxes so it will be nice to have her there to visit with me and make me laugh. They will probably appreciate me not trying to run away too…
But I am scared. Not just from the pain and bleeding following the surgery but the unrelated but even more painful nerve issues that arose in my face following surgery that seem to be arising before surgery now. One good thing, this time I have a neurologist and I have already contacted him via email and his assistant assured me that she has sent my message and details to him for evaluation. I don’t see him until the end of April but I am already seeing some scary changes since the 13th of March. I know that stress can make migraines worse and that is probably what this is, except for the Trigeminal Neuralgia pain that is making it hard to chew or floss my teeth.
When I was single I said I would never treat cancer. I would just let it take me. I had no reason to fight it. But now that I know what a healthy love is, that makes me want to be better not just for me but for Karen and our future and the children we are building our future for, I have to fight this. So as scared as I am. I am choosing to be brave and you know what? I know I am not here by myself. I feel a light holding me. The same one that has taught me, and saved me and protected me when there was no one there who could.
I have had Jeremiah 29:11 on my wall for weeks. It fell off a few days ago and I can’t find it but I have memorized the main idea of it? God said: I know the thoughts I think about you. They are of peace, not of evil. I want to give you a future and a hope.
If God wants to give me hope, He probably wants me to seek hope. I went deeper with my therapist yesterday about some family members who will never be satisfied with what they have. It makes me sad. All I ever wanted was time and relationship. I see money and things as tools to take care of people. I am glad they are comfortable and I pray they are satisfied someday. Hope is what I hope they find.
The world doesn’t offer much hope. We turn on the TV and there is violence, sex, drugs, anger. We are so desensitized to it, we don’t even realize we are drawn to it, even in all our good intentions. Our bodies and minds are frail and it is easy to become sick there too. Hope is the key. Hope is where we find abundance and joy, kindness, goodness and the very Spirit of God.
I hope the next time you think about watching a reality show that you think about how much production goes into that “Reality Show” so it will be compelling enough for you to want to watch it because trauma sells…and maybe choose hope. Find a show that teaches you something…or turn the boob tube off all together and read a book or play a game. Until we stop choosing trauma, we can’t know peace.
Be well.
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.
by Summer D Clemenson | Mar 14, 2022 | About Summer, Chronic Illness, Life
I hear a child having a meltdown in the hallway and I want to cry with her. Children should never have to live in a hotel. It is not fun living in a hotel. At all… As thankful as I am that we have survived here over 2 years, spending every penny we have to get by, and try to establish credit, and fix our credit, and wait on programs that promised to help us, and did but had barriers that stopped us from our goal of normalcy, of freedom, of doing more than surviving, but having space to move and create, and be able to invite people over…I guess that was the upside of this pandemic. We weren’t supposed to do invite people over so we learned how to Zoom…
I look forward to playing a board game with someone. Karen doesn’t have the attention span for that…I look forward to having a kitchen that isn’t also my desk or the bathroom counter. I look forward to having my yarn at my fingertips to make whatever… I want a patio or yard to grow tomatoes for Karen and strawberries for me. I would love a workspace that doubled as a guest room but I could work at a dining room table…I miss having a table! I miss my balance ball!!! I miss a couch to cuddle with My Love while we watch movies and eat popcorn I made not in the microwave….
I have an amazing blessed life. There are people that have so much less than I do and even people with so much more who are miserable. I know God has carried us and taught us much during our almost 8 years of marriage. I know we are getting closer. Today we got a number we have been waiting a few years for…this number should be a huge blessing and this time we are ready for it. We have grown so much that this time we know we won’t blow it. We have blown it a few times before. Bad habits and bad mental health can really take you bad places but we are prepared and have an action plan.
The big picture seems like it is coming into focus and for that I am thankful. You can’t even imagine!!!!!
I posted about flashbacks last week. Flashbacks aren’t just thoughts, they are all the feelings too. It’s almost like you are there again. On top of that, I had no time to deal with myself because I had to be in Vancouver for an MRI. We did stop at Jamie’s to give her her birthday present early which did help me feel more grounded.
The MRI was supposed to be an open one because I am claustrophobic but when I got there, I found we had missed their calls to reschedule so they squeezed me into a regular MRI, literally. It was terrifying.
They handed me a ball I could squeeze if I needed them to stop but the mindful part of me knew that would only mean they would have to start over so I focused as much as I could on my breathing in order to not hyperventilate. As I got better I was able to practice pursed lip breathing which is very helpful. I had my eyes closed because when I opened them my heart would race because I felt like I was in a coffin. After awhile I started seeing flower shapes. It may have been my imagination but maybe it was God helping me. They keep the room freezing, it is supposed to be helpful but when you have arthritis it is just painful. Halfway through, I hurt from head to toe.
When it was over I was so ready to leave! Karen brought me home and I went to bed. We agreed I had not advocated very well for myself in scheduling a mammogram for the next day so Karen called that morning and rescheduled for a few weeks after my next surgery…which is coming up soon.
I shared my flashbacks with my therapist. She agreed that we should talk in more detail about this family member and their actions and what I want to do with these memories. I talk with her again in a week and a half. I don’t have this family member in my life anymore. I know they have their own trauma experiences and issues. I am not angry anymore but I don’t trust them and I don’t feel safe around them, emotionally, so relationship is not an option, even though they have made it clear they don’t want a relationship. I need the memories to not have power anymore.
These memories are potentially fatal if I had not got away. I visualized that I had been brave enough to face them and realized 1 of 2 things would have happened: 1) they would have potentially killed me or 2) they would have broken. I didn’t let them catch me any of the times they threatened me and they calmed down and we went on with life. Our parents did not have the tools to change the situation. Because they didn’t catch me we don’t know what would’ve happened. If they would have been broken their behavior may have become worse in other ways; because they cannot kill me now the only part of me that can die is the part of me that is scared of them and I might as well work on a few other people I am scared of that I don’t have relationship with anymore, at this time, as well.
I have had a lot of fear in my life. I think I am ready to let some of it go because I am also very brave, in spite of my fears.
Like this surgery coming up… I didn’t know what to expect before. Ignorance was bliss. But I am no longer ignorant. I am a little scared. I don’t like pain. This winter has been hard and emotionally I feel raw and unprepared for much of anything.
I am being really honest here but I also know that my wife really loves me in a way that makes me feel heard and respected and there are people that pray for me that I don’t even know and God is good always and He has given me dreams to strive for and I will keep trying.
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.