May and June were busy, so most of my health journey updates were done via video. For those not on social media and for my own journal keeping I have linked those updates here!
Well, the last few months have been a little rough physically and emotionally and spiritually. I still do not have all the answers and we all know the unknown is awful for so many reasons. Short version is I am still fighting cancer, there may or may not be progression or growth. I took a break from part of my treatment to determine if the medicine is causing the symptoms. I am back on treatment and still too many unknowns, I have been introduced to more doctor specialists, am on more appointment waiting lists, have added a new medical app, had extra extra imaging, and got more punches on my imaginary health facility bingo card and am back to seeing oncologist monthly instead of every other month. I still am having symptoms with an unknown cause, but have learned the reason, so progress has been made.
In December, I started feeling not good more than I felt good. I just did not feel good, a little extra tired, and sore/achy. So many possible causes for this in December, right? Then I started noticing shortness of breath. Was this also the effects of December, too many sweets, not enough walks?!? I also have had some severe, random shoulder pain on and off that has caused some nights where sleeping is impossible, which brings a whole other set of issues. I need my sleep!
In January, I met with my oncologist for my regular 2 month appointment and shared my experience with her. She was not happy that I had not called. If I do not call, nothing is wrong, right?! (no, just make the call🤦🏽♀️) Well, there was much haste and energy because she feared I potentially had a blood clot, which is a possible side effect of my treatment. 🤨 Well, not good, but maybe an answer. 🤷🏽♀️ I am telling you perspective is huge. When you are hoping for a blood clot being caught AND it NOT being cancer you are in a uniquie situation. Oh, I love being unique!
Thankfully, it was not a blood clot. Sadly, it was not a blood clot. A blood clot when caught early is treatable. So, not a blood clot, then what is it?!? Another possible side effect of my treatment is damage to lungs. Well, I gotta breathe. So, off the medicine I go, to determine if that helps the breathing. It did not. That is good, because that means my treatment, that has thus far kept my cancer from progressing can be resumed. It is not good, because that means we still do not know why the breathing issues. At this point I am trying to think of Thomas Edison. He is the one that said he found 10,000 ways for it not working before he was successful with the lightbulb, right?!
During this time I saw a pulmonologist (lung doctor). He is a kind, smart young man with curly hair. I liked him instantly. He seemed to know stuff. Did not have all the answers, but more clues were given. I have a paralyzed diaphragm. Yea, you have never heard of that, have you?! Maybe, 2 of you have. Thankfully, it is only paralyzed on one side, so it is only crushing part of my lung and collapsing it. Hence, the reason breathing is hard. BUT why?!? Yea, google it. It does not make sense. I have not experienced the things that normally lead to this.
So, the diaphragm is controlled by the phrenic nerve which runs thru spine/neck down to diapghragm under lungs. Could this be why the piercing shoulder pain?!? I think it has to be. It for sure feels like a live wire going crazy and that is how I imagine a rogue nerve to be! And it all began happening at the same time. This is my own reason and theory. No doctor has confirmed, well, one doctor, the orthopedic kind, was pretty confident that it is NOT the phrenic nerve causing the pain, but I am not convinced. I will be seeing a neurologist, a nerve doctor, in May and gathering more information.
Before that I will be having a sniff test. Ever heard of that?! It is a special test/x-ray done by a radiologist to determine diaphragm function. Gotta keep gathering all the clues! Have I mentioned I do not like puzzles?! I do like a good suspense book, movie, or show, so maybe I need to lean into that. I also like Bingo, so I guess it is another punch in my imaginary card. Sniff Test ✖️
My very wise, this is how it is oncologist was stumped with the paralyzed diaphragm and intrigued by phrenic nerve theory, so she demanded insurance pay for a PET scan. I had not had one of these in 2 years. I generally have CT, MRI, and bone scan. Do not even get me started on why not just do the PET every time instead of the 3 different tests, I do not get it. So, the PET shows some malignancy, cancer, in my lymph nodes. This was not seen on images from February. So, is this cause of all the things?! Were they just not visible via the MRI and CT, but are visible on PET?! Or is this growth because I was off treatment for over a month?!? Yes, more unknowns. 😒 This is the most recent, as of yesterday, information gathered. I have not got to talk with my astute oncologist yet! I am sure there will be more information collected as she views these results!
That is the basics of the physical.
Mind, body, soul is all connected, right? Spiritually and emotionally it has just been just as wild of a ride. I am not quite ready to write about all of that. I will say Father God, Holy Spirit, Jesus have never been closer. My faith is strengthened as I question and cry out to Him. My confidence in His goodness is deepened as I seek Him and ask why. I am so grateful for His love and nearness in the unknown. I rest in Him.
I have had this word, expectations, on my mind and in my spirit each time I have thought about writing this post. Initially, I had expectations on my brain because I wanted to tell you all how off my expectations vs. reality of my lumpectomy experience were! First off, those of you who said, “oh, it won’t be bad!”, “Oh, a lumpectomy is easy!” You lied. I forgive you. But you lied. I was expecting it to be easy. Up the next day, moving on with life. I was NOT. For me it was awful! So, my expectations of it being a breeze really knocked me off course when it was an Oklahoma wind storm. I made it through, despite reactions to the anesthesia. I had a rough week and a half this summer because of that “easy” lumpectomy and about a month of some reaction symptoms, mainly ITCHING. Not a major deal now, but still more than I EXPECTED!
The good news was my wonderful surgeon, Dr. Mathias, did get most of the tumor. The bad news is that she was only able to get most of the tumor. So, doctors do all they can with what they can see and what imaging has shown, but these cancer cells do not have a sign on them or present in neon when viewing as a surgeon. So, she got all she could see and took a little more outside the known margins of the tumor, but when the pathology came back some of the those margins were positive. This is okay, and does not change my treatment plan, just something to stay aware of. And of course, we will because I get all kinds of pictures of my insides regularly. I guess it is sorta like an old school portrait studio subscription, but much more involved and way more expensive. Okay, so, maybe it is nothing like that…
At the end of July, I had my regular 3 month imaging. All scans, tests, and pictures looked great! Nothing new and no growth! I am due for this testing and imaging again at the end of the month!
Major life events often carry with them expectations. How things will go and how things will all play out can not NOT carry some expectation. I remember holding Lydia as a baby and praying for her husband. My expectations of who this would be were limited, but I prayed that he would love Jesus, be kind, love her as much as I did and laugh easily. My expectations were too low and my prayers were answered and then some! In August, Lydia got a husband and I got a son. My new son, Hayden loves Lydia so well and has been a wonderful addition to our family!
We had the best time planning and executing the big day and have been so blessed with our family gaining family! In my dreams and plans for my baby, Lydia, I for sure did not expect for woman, Lydia, to not be walked down the aisle by her daddy. I never would have expected to be the one giving her hand to her husband. There was for sure a void and an a missing during the wedding season and on the day of, nonetheless, there was an overwhelming peace and joy and strength that Father God consumed that was sweet and good and oh so real. Despite things not happening how I would have planned or expected, an amazing Father God made it all so peaceful.
I had absolutely no idea and no expectation that when a child gets married that the peace and the joy and the happiness is so big. There were no tears of sadness, but only tears of joy and happiness and such gratitude. So much gratitude. I am also astutely aware that this particular union was made sweet because it was orchestrated by God. Lydia and Hayden were God’s plan. They are God’s best for each other. They make each other better. It is amazing and sweet to see your child love and be loved.
I am still overwhelmed as I type this and reflect on how God works all the things for our good. The surprises, the losses, the quick unexpected turns do not surprise God. He comforts, He guides, He leads, He soothes, He celebrates, He provides, He is with us during the expected and the unexpected. He is with us during a lumpectomy and stupid, dumb reactions to medicine, He is with us when there is cancer in the margins, He is with us when we walk our daughter down the aisle, He is with us when it is good and He is with us when it is awful. He is with us.
Generally growth is a good thing. We want our plants to grow. We want to grow in our skills and knowledge. Growth is often seen as positive. Growth represents life, learning, and moving forward.
It has been over a year since my diagnosis. Last summer had so many unknowns and so. much. WAITING! When I finally began treatment things began shrinking and disappearing! I had a few bumps and pivots due to side effects which led to change in drugs. I have had adjustments and adapted to side effects, which are so minor in the scheme of things. I was just trucking along.
Then in early May I had my regularly scheduled on treatment plan mammogram and ultrasound. The radiologists doctor who read that report was mean and hateful and ugly. Okay, honestly, at this moment I cannot tell you if that doctor was a man or woman, old, young, black, white, tall, short, spoke softly or loudly…But they said the vile word, GROWTH. Okay, so probably, they are a superb doctor, person, and completely fine human, but I did not like what they said. This was the first time since on treatment that I had heard the word growth.
Each test/image/scan I have had since being on treatment has resulted in no new growth, no progression. I had become comfortable with treatment, side effects and living life fighting cancer. So, to be told “I see growth” was a punch to the stomach. It took about a day for me to lean up from the punch and then I was ready to learn more and know next steps, but then it was the weekend. And then more waiting for this doctor to see report and then referrals made, and then their nurse is out all week and they have no openings, and yada, yada, yada, which took me back to last summer and all the waiting! However, this waiting also gave me time to get the place of acceptance which is where peace lives. Accepting again, there are so many things that I am powerless against. Accepting that yes, I am still fighting. Accepting that I might need to change treatment plans. Accepting again that God is bigger and greater than me FOR SURE and so much greater than cancer.
So, after the decade of more waiting, which was actually about a week and a half, I had some more information and an appointment with a surgeon to plan for a lumpectomy. Fast forward through the waiting and appointments with oncologist, lab work, meeting with surgeon, another MRI, and a scout placement, I am scheduled for a lumpectomy July 2nd. After I had a breast MRI the brilliant, beautiful, wonderful, kind doctor said she in fact did not think the primary tumor had grown, but that the mammogram just shows the difference of the tissue because of how big the tumor was. This is confusing and most of us if we see the imaging it would all look the same, like blobs or gray mazes on a screen. I just really liked hearing that there was not growth! I do not know that I will ever know if there was growth or not, but the fact is that the primary tumor from Spring 2023 to Summer 2024 has decreased in size significantly!
I know you are wondering, why not a mastectomy, why do you even still have those things?!? Now, based on my limited, recent education, understanding, and my new citizenship in the land of breast cancer here is a little lesson about stage 4 breast cancer. Stage 4, metastatic breast cancer, or cancer that has metastasized, which means the cancer has moved to other parts of the body, is treated somewhat differently than stages 1-3. Once the primary tumor in the breast is not the only cancer in the body, then as my surgeon explained, it becomes a game, albeit a very serious game, of whack-a-mole. The reason a mastectomy is done is to remove the cancer, all the tissue around it, and prevent it from spreading. After it has spread the game changes. A mastectomy removes the entire breast. A lumpectomy is a surgery to take the lump. The primary tumor. Now there are various other factors that determine lumpectomy versus mastectomy, such as size of tumor, genetics, and just the type of cancer cells. However, one of the big factors is if it has metastasized or not. The reason I did not initially have a lumpectomy was because the tumor was so large and it would not be helpful if the malignancies did not respond to treatment. Now that I have had a great response to treatment and most of the malignancies have either disappeared or shrunk significantly it is best to take that primary tumor out in case there is any chance of there being or ever being growth!
Another question I get is, why no chemo. (Again, this is based on my own understanding.) No chemo is also because of the difference with if it has metastasized (spread) or not. Part of chemo’s purpose is to kill the cancer. The chemo is tailored to the different types of cancer cells. The chemo is to kill the cancer and prevent it from spreading. So, when it has already spread then it is in different parts of the body, in my case the lymph nodes and liver. Treatment then is to stop it from continuing to grow and spread. After it is in the system, in the blood, it does not go away and can not be completely eliminated. If it were to progress to other parts of the body or grow where it has already been, then chemo may be the next step or whack of the mole. For now my treatment plan is inhibitors and hormone blockers.
Physically I feel pretty good most of the time. I have days/times when I feel yuk, but generally not enough to not be able live my life how I want and go and do what I want with some adjustments and adaptations. There are some uncomfortable and annoying side effects, but completely livable. I do find my stamina is limited and there is some fatigue, but again manageable. I am so blessed and have a life that allows me to easily accommodate for these annoyances.
Regarding the spiritual and emotional aspect of this. Emotionally it can be a roller coaster, but mostly one without a height restriction. Spiritually it is sweet. I continue to feel comforted and held up by my loving Father God. I do not believe the lie that “God will not give you more than you can handle”. I have been given or allowed or come across and experienced way more, like overflowing more than I can handle. This is the sweet part. It is these annoyances and the bone chilling greatest fears that become a reality that are so much more than I can handle where I feel the hand of God holding me, drawing me close, and being my strength.
If you have not read it yet, I again recommend Kristen LaValley’s book, Even If He Doesn’t. The truths she expresses in this book are exactly what I have experienced during this journey through cancer and previous life experiences. Bad things happen, we experience great pain and loss. We pray and plead and beg God for certain outcomes. Sometimes these prayers are answered exactly how we want. and we are happy and overjoyed because our prayers are answered how we want. Sometimes we are mystified and confused because we do not get the answers and outcomes we want. The point is no matter Father God, the maker of the universe is with us. He is near.
If you are a parent or have ever had any interactions with a child or an immature person then you have had an experience where the child is going berserk, throwing a fit. Maybe, there is not even a tantrum, but just different perspectives of a situation. Hopefully, as the adult in the situation you have been able to stay calm and see the situation for what it is. You know not being able to cross that street, have that toy, go to that party, do that thing…is not going to end a life and that the tantrum, although very real, is not the end all of life as we know it. As an adult or matured person with an understanding of safety, schedules, finances, health, whatever… that the tantrum/strong emotion inducing situation is going to be okay and the child will go on to live a full life despite not getting what they want so badly right then. Sometimes there is the beautiful benefit of that child/person eventually understanding, oh, yea, they were right I did not need that totally amazing thing right then and my life has been better without that experience. Sadly, we often do not get the benefit of an admission of that, but ya’ know, yay, when we do.
All of that set up to say I think this is a part of faith and the good kind of growth. Yes, cancer is a big deal. There are a lot of really big deals in life. But is it, are they, really that big in the scheme of eternity? If God heals me. If all of this treatment heals me. If I live another 47 years or 37 years or if I only live another day, if the cancer spreads and progresses or completely disappears… God is still good. God is still in control of all the things. God knows. Father God is with me. Jesus made a way for me to always be with Him. He is with me during every side effect. He is with me with each progression or no evidence of disease. He is with me thru all the hard things in life and relationships. The point is I trust Jesus, I trust Father God, and I am so thankful and full of peace because of the sweet Holy Spirit. I want to be the child who trusts when I do not like the answer. I want to be the child that quickly says, okay, Father, I trust you, I do not like it, but I trust You. I want to be the child that may have a tantrum, but after calming down, easily admits my trust in His working all the things. Faith is the belief and understanding that thru my melt downs and as I scream my questions and doubts, and have a tantrum Father God validates it all, holds me, is with me, and loves me.
My prayer requests:1. easy surgery July 2nd and the recovery, 2. easing of side effects >>>sleeping/resting, intestinal health and ease/relief from ITCHING!, 3.my kids as they each face challenges and triumphs in their own lives, 4. Wedding planning & prep! Lydia and Hayden get married, August 11th!
I know it has been a cool minute since I have posted. I will tell you in the world of cancer often times, no news is good news! That is currently true for me. I had routine imaging done at the end of January and the results were all good news! No progression, no new disease, and the current disease it still shrinking! I am so, so thankful! I did change medicine and have even had an increase of dosage because after one round my numbers were good. Then again another bump in dosage! At the end of the February I saw my oncologist and we decided to bump it up some more. Thankfully, the medicine is working and my side effects are easy in the scheme of things. I have mostly good days. Some days are better and some days are meh. I have been on the higher dosage since last Friday and it has been a rougher week. So, pray my body adjusts and I have less meh days! I am thankful for my job and season of life allows the flexibility I need to rest and adjust.
We have had much to celebrate and much to grieve these past few months. I have been affected by and attended 4 funerals since the middle of December. This blows my mind as I even type it. We all can just take it one day at a time. As I look back I see and feel WOW, just wow. It has been and it is a lot. I do not know why but, I am always astonished by the sweetness of God’s nearness during times of grief and pain. He brings peace that gives me strength.
I recently read a book, that I 10 out of 10 recommend, “Even If He Doesn’t”, by Kristen LaValley. ONE thing she said that stood out to me was, “when we are obsessed with finding the purpose for everything, we’re seeking comfort in the purpose rather than the comfort of Christ…when we stop trying to squeeze purpose from our pain, we can rest in the peace of God. His peace,-the peace that ‘transcends all understanding’-will hold our hearts perfectly when we don’t understand.”
Now I am not going to lie and say that knowing the purpose never gives me comfort or helps ease the pain, but it cannot be on what I depend. For sure I get giddy and stand in awe when I can look back and see the minute details that were weaved together by Father God. I tend to be a Pollyanna and look for the good and seek the sunshine, but often times in this messy thing we call life it is hard to find the good or wrap our minds around understanding the why. Life is hard. Bad things happen. Fair is often NOT how things land.
So, I guess what I am trying to communicate is knowing and understanding purpose can empower and encourage, but it cannot be where we seek our comfort and peace. We will be disappointed and possibly even hurt more when there is no purpose to find. Healing comfort and peace only comes from and in Jesus. Painful things like cancer, addiction, betrayal, death…, do not make sense and would be senseless to find purpose in, however, Jesus brings comfort amidst all the senseless. God is still so good despite the pain in this world. God is still good during cancer and grief and loss, even when there seems to be no purpose.
And then the celebrating! We had lots of family fun celebrating Christmas. I had a blast at my 47th birthday party! No, I am not too old to have a birthday party game night! I have enjoyed sweet times with friends. I have attended some great events, had fun with my sweet kids, and seen successes with students and colleagues…AND then a few weeks ago my precious first born got engaged to be married! So, shrinking tumors and getting a son in law is a lot of GOOD! I have much to celebrate in the midst of and/or despite pain, loss, and the senseless!
God is good during the celebrations and God is good during the pain. I hope we are all able to see the good and also rest in Jesus during the painful. jj
Big things have happened over the last few weeks AND big things happening this week over here in my world! The end of October and the first week in November I got to have all the things tested, imaging done, contrast received, and more imaging done again! If there was a punch card or a bingo card I could get stamped I would have got to call, “BINGO”, because I have been to all the major health care systems in the OKC metro area! I could go on and on about my gratitude for health care workers. I could also talk a while about my gratitude for health care and technology and the wisdom allowed for those who can do and see and imagine all the things. I feel such gratitude for access and such a selection of health care facilities. It truly is such a gift. My heart hurts for so many around the world enduring such pain, loss, and chaos. This makes me that much more aware and thankful for the gift of health care.
The good news is all the tests and imaging shows that the treatment I have received is working! The lesion on my liver has decreased from 2.1 to 1.2, I do not know if that is mm or cm or inches or yards or a footlong, I just know it is shrinking! There has been no other progression and the tumors in breast and lymph nodes are also shrinking! I will have more imaging, hopefully this week to get a more exact picture of how much those have decreased!
Scripture talks about a “peace that passes understanding” (Phil. 4.7) and that is exactly what I have experienced! Especially, in that MRI machine! I do not know what it is, but it is like I am enveloped in love and peace when that table moves me in and out and the noise is clambering like construction workers with a jack hammer digging through cement! I just feel peace and imagined that clanging was the rigs and engine of a cruise ship. If I were laying on the deck of a cruise ship and men were hanging on side of ship cleaning the windows or painting some part of the ship or just the engine from the ship I would not mind the noise. This is partly what I imagined with that loud noise! Sadly, there was no drink with an umbrella or pool games happening when I got off the table, but there were sweet health care workers showing kindness and compassion! And, oooo, that sweet peace and love of Father God surrounding me!
Some other big news is my medicine. The medicine God has used to shrink all the things, well it has also knocked my liver enzyme numbers off the chart high. I am so special to be part of the 1% of people this does this too. This means I have had to stop that medicine to keep my liver healthy and safe. So, I will be beginning a new medicine this week! Please, pray it works and keeps shrinking the tumors, that my liver responds or doesn’t respond, and that the side effects are non-existent or at least tolerable!
Other big news is because the lesion in the liver has decreased I get to see a doctor about radiating/removing (?) doing something to what is left of it. This could lead to me being able to be in remission from the liver cancer! Not to get too far ahead of myself, but this is exciting possibility.
The next big news is I am getting my girl guts out, a hysterectomy. Due to my type of cancer I am at a higher risk for other types of cancer, so if I can remove some of the risks then I am going to do that. I am so thankful for the life these parts of me have provided, but I am at peace to let them go! Please, pray as I will be having this surgery, Monday, 11.13.23. I saw the surgeon on Friday, 11.3.23 and she said she was booking surgeries about 4-6 weeks out. Well, I then got a call the following Wednesday, last week and she said “how about Monday!??!”
Thank you to all of you that ordered an “Celebrate Today” t-shirt! The proceeds from this helped me pay some of the copays that were due with all the tests and imaging! So, thank you! If you would wear it some time this week and think of me, pray for me, and then send me a picture of you wearing it, this would make me so happy!
Another big thing was a really special time I had at a retreat for Stage IV a.k.a. advanced cancer a.k.a. metastatic breast cancer (MBC) patients and their support person. We dubbed ourselves the lead singers and back up dancers. This was a really sweet time my sister and I experienced and I plan to share more about it with you soon!
Those are the highlights of the big things happening over here. I am sorry if any of it was more than you wanted to know. I just keep being reminded about pain and challenges that we all carry and I do not want to shy away from sharing the hard. Life is hard. My hard may look different than your hard, but that doesn’t make it any less/more hard. You may not be laying on an MRI table, but it still may be loud and scary. My hope and prayer for you is that you will take time to listen and be aware of Sweet Holy Spirit enveloping you. I hope you can hear and feel the Peace in the midst of the loud and chaotic. He is there. 💜jj
I feel great! I am in my third month of treatment. I feel healed. Maybe it is a mindset. Maybe I am in denial. The fact is the tumor I initially found that launched this journey I can no longer feel. That tumor was about the size of a fist.😧 I cannot feel it at all now. Also a fact is my stamina is more limited and I battle fatigue. I have quick waves of uneasiness/nausea/heat flash, but they are quick and completely tolerable. My blood work confirms I am on treatment. Some things are high, some things are low which is expected with my treatment. The biggest concern right now is my liver. My liver enzymes are off the charts high. My medication dosage has been adjusted to hopefully ease these numbers. These high numbers are not anything that I yet feel or notice symptoms of, however, clearly I do not want to damage my liver. At the same time I do not want to decrease medicine if I do not have to, because I believe it is working. Pain and discomfort I faced this summer is gone. I feel great!
So, send up praises to our big, awesome Father God! AND of course, please keep lifting me up! Pray for continued healing and that those liver enzymes get down to where they need to be! Also, pray for my sleep. I am tired, but battle being able to go to sleep at night.
I will have MRI and Pet Scan at the end of October/first of November to get an inside view. Also, in the next month or so I will see a oncologist gynecologist surgeon (you know that was a lot of school to earn that title!!😁) and then hopefully have surgery to remove ovaries. The kind of cancer I am fighting is genetic and puts me at a higher risk for ovarian cancer, so I will get those ovaries outta there. They have served me well and been successful in their function!
We are settling into a routine after so many changes the last few months. I am absolutely loving my new job! I am still overwhelmed in the best possible way with God’s provision at just the right time! I am honored to get to work with the people I get to work. I love the challenges this new position brings as I search and discover creative ways to reach and connect with kids/families virtually. I stay motivated learning different platforms and methods for teaching and learning. I cannot even adequately express the many ways Father God has orchestrated this job {and the people and working from home and the variety of students and the level of professionalism and care and the balance of challenge and comfort the job, the position, and the organization} to show His love for me.
During the last 6 or 7 weeks I also had the opportunity to take a class virtually. I am teaching virtually, so why not learn virtually? I took a writing class that met once a week for 6 weeks. The first lesson was about poetry. I like poetry. It is not something I regularly read and for sure have not had a practice of writing since it was required of me in junior high. However, I paid for the class so I was going to follow directions. In that class the teacher (precious Kristen LaValley) said, “look around your room and write a poem about something that makes you happy or brings you joy.” Now she gave a little more instruction before that, but that was supposed to be our inspiration. Okay, hold this thought…
You know how when you clean out a drawer or closet and everything has to come out of the drawer or closet. Then you wonder how all of that fit in that space. You are surrounded by a mess, right?!
Okay, now this writing class started during the first weeks of school. Remember the “whirlwind” of change?!? Well, I had to transition from going to work at a school with a classroom to going to school across the room in my house to teach at a desk with a computer. I have not been set up to work from home, so lots of change was involved. I moved my bed where my “dressing area” had been and put a desk/virtual classroom where my bed had been and then had to consider what will my classroom look like behind me. I don’t want students to see my bed, but if they see the window then there will be glare and I myself want to be able to see out the window…Then how do I know what I will need because I still will need office stuff and globes and items to use when teaching…but all my classroom stuff is mixed up, all boxed up, but I know I have at least 6 staplers and tape dispensers, but which tub are they in in the garage and why does this stupid, dumb, stupid printer not work now?!?!
So, when the teacher says look around the room and write a poem about something you see…I am thinking, ugh, uh, what?!? It was/is a mess. So, this is the poem I wrote, mess and change.
Just so you know, my teacher said poems do not have to rhyme. All of this to say… Change is hard and often not pretty and often not fast. For the last 7 or 8 weeks anytime my sister comes into my space, I ask, “does it look better?” She generally, looks at me like I am kidding (I am not), and says, “um, yea, sure.” 🙄 Well, it takes time to adjust to change and sometimes little adjustments make big difference even if not obviously seen by anyone else. I think I finally have my monitors how they will stay, but there are still piles of really good stuff surrounding me that does not have a nice home yet. That is okay.
My journey in the world of cancer has brought much change. The mess of this change is scary and much of the change/mess is still unknown and yet to be discovered. That is okay. I am doing the best I can with what I know now and can do now. I am living my best life and praising God for His consistency in my life in and through all the changes and all the messes!
Do not be too hard on yourself during your changes and messes. Some things take more time than others and that is okay. I have found for real growth there is generally change and mess that comes before the growth can be seen and/or recognized by yourself or others (like your sister). Remarkably, after the pain and frustrations of the change/mess things are clearer, brighter, fresher, and hopefully, in regards to my work space more organized!
I love you all and am so thankful for your continued support, texts, messages, cards, hugs, and all the prayer! Thank you to everyone who has ordered a CELEBRATE TODAY t-shirt and if you have not yet, then you have until Sunday, 10.15.23. ORDER HERE 💜jj
Whirlwind. That is what the last few weeks have been. So many changes. Some changes were long expected and some came out of nowhere! In my last post I had a list of prayer requests, well, I can report that your praying worked!
I do not even think I could list all the little details I am aware of that God has orchestrated. I will try to share some from the last few weeks, but seriously, it is so crazy how He WORKS it all together for my good. So, I am here to give Him all the glory. What really blows my mind is that He is doing all this orchestrating when I do not see it and do not recognize and am not aware. However, sometimes, you can not not recognize.
My health. I finally started treatment of hormone blockers! I am feeling great! So, after all the waiting and tests and more tests. I started drugs to stop feeding the cancer. This is good. I will have tests and scans in about 4 months to check the effects of these blockers. NEW PRAYER request: pray the hormone blockers work! Pray they stop the growth and spread, and make the cancer go away! So far, I have had appointments every few weeks to check blood and symptoms and everything is moving forward! Bottom line-I am fighting the cancer and feeling great!
Now a few of the beautiful details that scream, “I AM”, God. I did see a different oncologist. The oncologist did not change any of my treatment plan and I was encouraged because she confirmed that the plan I am on is the best and most aggressive for my diagnosis. The twist here was her delivery. Remember, when I shared the word, palliative? She guffawed ( I have never used this word, but it is most appropriate) when I asked her if this is how she would describe my treatment. Palliative? NO! She said we are treating to cure AND put that liver cancer in remission. The other CRAZY, beautiful twist here is that as she was looking at my PET scan results that showed the initial concern of cancer in the liver, which led to our cries for no cancer showing in the MRI of liver, she said the spot seen was so small that many doctors would not have even recognized it as concerning and would have treated me as if the disease was localized. The imaging was so close to normal that it could have easily been overlooked. So, IF my prayers, and yours would have been answered as we asked and NO CANCER would have been seen in the liver via the PET scan, MRI, and biopsy, then I would NOT have been receiving the best treatment plan possible. Is your jaw on the floor?!? I know!
This is part of the other beautiful part of God working all things…the new doctor I saw was referred to me by a new precious friend who has been walking a similar journey for YEARS and has been so encouraging to me! She called Nurse Vicki to get me in for me to then find out that many sweet friends have also seen Dr. Toma, so they started calling and telling Nurse Vicki to get me in! As soon as I called, Nurse Vicki, she was fighting for me and encouraging me, calling me back before I was even a patient just to update me on my insurance referral and to say I am still working on it and we are ready to see you. If I say this was a night and day different experience from what I have been experiencing these last few months it would not adequately describe the awesome difference in care, respect, and value of relationship that I have been missing and did not even realize I was missing. ( I know more run on sentences and if I was telling you this, I would not have been able to stop and breathe in the telling either!)
Okay, another check on my prayer request list. My job, my life as a teacher around wonderful, yet germy and exhausting middle schoolers while I am fighting cancer. I was geared up, had been doing all the things one does to get ready for a new school year, had had a few planning meetings with coworkers, had done some required professional development, had began working in my classroom…Then on a Wednesday one week before my official report back day I scroll passed a virtual teaching job opening post because I am already settled and have basically started the new school year, did not even think about it. I went to bed and dreamed of teaching virtually. I RARELY remember dreams. However, when I do, it stops me or wakes me and I listen. As soon as I was awake enough and coherent and the sun was up I sent an exploratory text. I was just asking what does a day look like for a virtual teacher?!? So, I saw post on Wednesday night, sent a text to the principal early Thursday morning, had phone call with more questions, had interview early Thursday afternoon, came to realize that this was THE PERFECT situation for my season of life. Every question I asked received a crazy, perfect answer. I have never made such a life changing decision as quickly or with as much peace. Friday morning I received a job offer, Friday afternoon I accepted it, Friday evening I quit my job I loved that I had no plans of quitting, Saturday morning/afternoon I, my family and amazing small group from church packed up and moved me out of my classhome (my brick & mortar school was like a home). Monday I started my new job. Do you feel tired and like your spinning just from reading that?! Yea, I still feel like I am spinning. Oh, and my new job, new insurance will cover MD Anderson (previous insurance did not) when and if I choose to go there, but because of confidence I now feel with Dr. Toma and her confidence I do not currently see the need!
During the same time as I am beginning my treatment plan AND making major career changes my sweet kids are climbing hills and moving mountains with their own big life changes! Lydia, the oldest, has started a new job, started grad school, continued coaching, and got a boyfriend! Zoe has left me. Okay, maybe that is too harsh, I mean Zoe is moving on to more adventures on her own. Zoe has moved and started college in Stillwater at OSU. Nate, my baby, has been left as the only child at home, but is he really home?! He drives, he works, he goes to Home Depot, he has started a new high school. Which is another God orchestrated life event. Early this summer Nate had decided to return to Moore, where we live, to attend school with kids he grew up with through elementary. He left Norman schools where he has attended the last 4 years. Only God knew I would not be in Norman anymore and the added blessing of Nate being in school 2 blocks from our house AND now my job (at our house)!
So, ya’ll I know that is a lot AND this is only my small attempt to share a slice of all the beautiful orchestration of God’s WORKING it all for my good. In my brain I know God is always working for my good, but it is so good for my heart when I can see and be aware of the intricate details He is working. It truly is stunning.
The challenge is when we cannot see. When we cannot feel. It is so hard and can be so painful when we are far from understanding the intricacies and details of the how and why of our lives. Most of the time during pain and injustice it is frustrating to even attempt to make sense of the whys of life. Why cancer? Why betrayal? Why is the answer often no? Why do people lie? Why are we mean? Why do bad things happen? I want to always trust. Trust my good, good Father even when I do not understand and when I cannot see the beauty. If I believe God has worked all of these details out for me (and I do) then I must believe He is working everything from lump to liver. If he is orchestrating these amazing things that would make no sense without Him that I can see then He is orchestrating what I cannot see too. Cancer is still awful. Injustices are still wrong. The peace and security come from knowing He is working it for my good. He is taking the awful and working it for my good. May we all be open and aware of His goodness when we can see it and trusting when we can’t!
What to pray for? Continued strength and that I continue feeling good! Adjustments for my kids as they are doing all the things. Adjustments that come with new job and working from home. Continued discernment and peace with next steps and appreciation for the journey even when it is slower than I want it to be and do not understand all the whys.
Well, I did not get the results I would have chosen. My liver biopsy shows my breast cancer has metastasized and is in my liver too. This means I have stage 4 breast cancer. When breast cancer has NOT metastasized, which means spread to other parts of the body, then it is treated with chemo, sometimes surgery, and sometimes radiation. This is a curative treatment, meaning those things tend to cure it and make it go away. When it has moved or metastasized to other parts of the body it means it is in the blood and can pop up anywhere, this is also what pushes the staging to 4. Stage 4 is treated palliatively, meaning it most likely will not be cured and not go away, so let us see what we can do to slow down and/or stop the growth and spread of cancer. Ugh!
{Obviously, I am not an oncologist or a medical doctor of any kind, but this is simply my understanding and what I am learning.}
So, what is the plan? What happens now? Again, not the plan I would have chosen, but hormone blockers. Hormone blockers are the plan. My cancer grows and is fed by hormones (ER+, PR+, HER2-). So, I will orally, daily take hormone blocker pills to stop feeding the cancer. Hormone blockers work slower than chemo but can be taken and used much longer than chemo. The side effects are generally less extreme than chemo, which means I can continue living life somewhat normally, whatever normal is!
My hope and prayer is still for complete healing. I hope and pray the hormone blockers will stop the growth and spread, so then eventually I can have surgery to remove tumors from my breast, lymph nodes, and liver, then chemo, or maybe, it is chemo, and then surgeries?! Or I may just always be on hormone blockers.
Bottom line as of now, no chemo and no surgeries. I am taking it one day at a time. Doing what I can do with what I do know. Enjoying the last days of summer until returning to school. Staying in the facts and feeling all the feelings. I recognize this is going to be a long fight and I am ready for it!
If you want the longer version, please, keep reading!
Ellie Holcomb has a song, “I Don’t Want To Miss It” and I don’t. I don’t want to miss the blessings along this painful path. I want to learn and grow all I can during this season. I don’t want to miss the hand of God as He gives me peace when receiving the next bad news. I don’t want to miss the comfort He gives when I meet another survivor on a similar journey. I don’t want to miss the opportunity to give grace and a kind word when… someone tells me I will need to wait for some stupid reason and I know they have to enforce and follow stupid, stupid, dumb procedures because that is the law or idiotic insurance/government rule and they are the person who works in this stupid system and has to attempt to rationalize this stupid system every day and most people do not respond kindly…so, I want the opportunity to be kind. And I have had multiple of these dumb, stupid opportunities. And, yes, sorry, that was a bit of a rant…My point is I am here for it all. The good, the bad, the ugly.
It sucks, it is sad, it is crummy, and discouraging to get bad news during each doctor appointment I have. It has the potential to be overwhelming if looking too far into the future. I am realizing this is not going to be a quick fix. When Nate was diagnosed, we quickly had a diagnosis and almost as quickly had a treatment plan. His treatment plan was the same treatment plan he would have received no matter where he was treated in the U.S. This is sometimes the case with cancer treatment, depending on the size of the tumor and/or the location of the tumor(s) there are certain protocols. These protocols have a start and end point. When cancer has metastasized there are more factors, which make treatment less definitive. So, there will be more choices and decisions to make as I progress. How the tumors respond to the hormone blockers and how my body responds to this treatment are a few of those factors.
Perspective. Perspective is crazy. Many of you, as I would be if I was hearing my news as not me, feel sad for me. And it is sad, however, I have been so encouraged by hearing others’ perspectives. In a Facebook group I have gained access to because of my new status as a “Mets” girl I have been encouraged by others walking a similar journey. Comments such as, “Wonderful only one spot”, “Oh good, only on your liver”. So, again, I find in my life the statement “it could always be better, but it could always be worse” is so glaringly true. My perspective has changed these past few months as I have rolled through “oh no, cancer”, to “oh, thankfully only one spot in the liver”! I am telling you it is so strange to be disappointed to not get to have chemo. I am so thankful for the advances in breast cancer research that changes and improves protocols. For example, my diagnosis if received 5 years ago would be treated differently than it is now. Oh, I love being on the cutting edge! (insert some sarcasm)
There is another song from Bethany Barnard, “You Know“, that also resonates with me. It is a powerful and one of my current anthems! It proclaims the power of Jesus and that despite life not being what we have chosen God is bigger than it all. I believe God brought Jesus back to life and since I believe that, then, of course, I believe He can heal me or walk with me (which is just as much a miracle) on this journey because He is bigger than it all. I trust Him even when it is not the path I would have chosen.
I am so grateful for your continued love, prayers, and support for me and my family. I feel so loved and supported. So, many of you have asked “What do I need or what can you do for me?” I do not know and I wish there was something great, tangible that I could tell you I need. Just keep praying. Many of you have spoiled me with little gifts and cards and they hit the spot and have come just when I needed them!
For those of you that pray I got a long list! Pray for my discernment, endurance, no nausea, no extra exhaustion as I return to work, continued peace, healthy balance of work/life/health, of course, keep praying and encouraging my sweet kids as they embark on new seasons of life and at the same time want to care/worry for me, and my precious mom and sis as they take care of us all! My insurance does not cover MD Anderson, however, I have chosen to self-pay and scheduled a little one-hour appointment to gain a different perspective on my treatment plan. That is currently scheduled for early September. I am also considering changing up my medical team here, so pray for discernment for that and appointments to open up if that is the direction I am to go, and if you are praying anyway, go ahead a lift up me to having to take a few less dumb, stupid insurance/scheduling/referral hurdle jumps, red tape, stupid excessive phone conversation things.
Thank you for reading to the end. I apologize for a few run-on sentences, I just couldn’t properly express myself without them. And one more song to encourage you! Wonderfully Made is a good one! Be encouraged! You are wonderfully made and made for lots of good things, so get out there and live your best life! I am! jj
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