Heart Hurts

12/26/2023

Last year at this time, Elijah and I were driving to Minnesota to visit a hockey friend who moved there. I was so determined to get there that we drove straight through all day, through the ice and snow, until we arrived around midnight. His friends family was so sweet and had the beds ready for us to collapse in when we got there. And I had such a great time there, even though the snow was high and the roads were icy and scary. It may have seemed like just a visit, but for me it was much more. It was a possibility of a new life. You see, we were actually really considering a big move to a place like Minnesota (or nearby) for hockey. I spent countless hours researching towns and hockey teams and house prices. Imagining Elijah playing in a place that thrives on hockey and thinking about him playing on outdoor ponds in the winter was so exciting. Little did I know all that effort would be in vain. In 3 months, I would find out I had breast cancer and my whole life would be turned upside down. All those thoughts and plans would have to be put on hold or forgotten altogether, since Elijah is getting older now and the possibility of him finding a different place to play is slipping away. And I don't know if it would have worked out anyway, even if I hadn't had cancer, but it's just one more disappointment to add to my life's journey.

I don't know why this happened. I don't know why things never seem to work out for us. Through the years, I continually have what I call heart hurts. They are things that have hurt me so bad that any reminder of them make my heart hurt. Unfortunately, my list of heart hurts has become long and just driving around my city, I can feel multiple heart hurts on any given day. School, church, an old house...and today, I am finding another one added to the list, thinking about what could have been just a year ago. I really needed and wanted a change in my life. And unfortunately, the change I was looking for and the change I got were not at all what I expected. I try to stay positive, but the truth is that this past year has broke me and I will never be the same again.

Today, I Cried

 12/20/2023

Today was my 26th dose of radiation for breast cancer. And while I was being radiated, I felt the tears flow down. And not just for one reason, but many.

I was semi-excited to start my radiation because I knew that meant I was coming to the "end". But it has been so much harder than I imagined. The beginning was hard because I started so close to chemo and I was the most tired I have ever been in my life. I think that's because I was still suffering the effects of chemo while then adding the side effects of radiation. It was probably about the 20th dose of radiation where I started feeling bad physically. My skin was red and burned and that's when the delays started. My doctor made me take 2 days off to give me 4 day weekend the second week of December. The next week (which was last week) he wanted to do it again but I begged him not to because that meant going into the new year. He agreed to let me just take Friday off since this week is a 4 day week anyway (because of Christmas). (I also asked him if I could just cut my treatments down instead but he said that was improper.) Unfortunately, it still does put my last treatment in the new year. And since that day, the burning has been so bad, specifically in my armpit area. They treat that area because of the lymph node involvement. Every day, I beg God to allow me to continue without another planned break. If I could just make it to Christmas, I think I can finish. 

It's hard to describe the mental toll this all takes on a person. I'm a mess on the inside. I feel like I'm in a constant state of panic and anxiousness. So many questions. So many unknowns. Could I be doing all this and it still not be gone? What if it is gone but it comes back even after all this suffering? What if all this suffering was actually unnecessary and I'm just killing my body for no reason now? How much is that one treatment in January going to cost me??

There is an older lady that has recently started radiation. Her time slot is after mine. She is very sweet and says hi to everyone. Everyday she comes with her daughter by her side. And today, It reminded me of my mom and how I wish she was here. Also, how I wasn't around nearly as much as I should have been when she was going through her cancer and treatments. I'm glad she didn't have to go through radiation because it really sucks. But only now can I understand what she might have been going through during her fight. And I wish I could go back and be there more, be more supportive. I should have been with my mom to all her treatments. Because I lived so far away and by the time it took us to move up there, I was only able to go to her last chemo treatment with her. I hate that. I miss her so much. I wish she was here and it sucks that she is not. Sometimes, you just need your mom.                  

My Last Chemo Coma

 11/7/2023

Last Tuesday, October 31st, I had my final chemo treatment. I got the ring the bell and yeah, it's great to see the end of that tunnel. However, I still have to go through the rest of the side effects for the coming weeks. 

It's hard to describe how it feels after chemo. The day of and next day are not too bad, just tired. But then it's like you go into a chemo coma. It feels as if the clouds not just are on top of you, but all around you. You are so tired and your brain is so foggy. You are irritated and annoyed. You can't keep your eyes open. Your stomach hurts and your muscles and bones ache. You have a headache. You lose your taste. You have these hot flashes that make you feel like you are on fire every so often. Honestly, you lose at least 3 days where all you want to do is sleep. It's hard to keep up with life or people or social media. You don't know what you need or what you are doing half the time. It's exhausting moving from the bed to the couch. After about 4 days, you start to see cracks in the clouds. You will have an hour or two where you finally feel like you are starting to be a person again. But the breaks will only last so long and then you will get so tired and feel like you are back in the clouds. Eventually, the breaks come more often and little by little you feel like you are returning to "normal". Even though, there is no normal anymore. But just better than you were, anyway. As the days go on, it does get better and better but you will always tire out more easily than you would like. When you start to feel good, you will overdo it and then pay the price later. I can't wait until the effects are all gone, I start getting my hair back and most importantly, can fully taste food again!!

I thought that I would have at least 2 weeks rest before radiation, but as momma says, "there is no rest for the weary."  In order to try and finish all my treatments by years end, I found out the day before chemo that I had to start radiation this week. So, they squeezed me in for the mapping CT scan during my chemo day and I have started radiation just one week later. They are a little concerned about the burning since I'm doing it so close to chemo and apparently, my chemo is radio sensitive so I may burn worse than some. But I am also glad they are flexible and willing to help me get all the treatments done before the end of the year. So, here we go onto the next phase of fun!

Open Eyes, Open Heart

 10/18/2023

Now that I am post 3 chemo treatments with only 1 left, I have had some time and mental capacity to reflect on my journey, so far. When I started this process, I read a post from someone going through breast cancer and one thing that stuck out to me was her talking about how you will be surprised about the people that are there for you and the people aren't. When you go through something so hard like cancer, it's when you learn who your true friends are and sometimes it's not the people you think it will be.

When you are first diagnosed, you have lots of support, lots of messages. After a while and you are in the thick of the treatments, the support dies down, which I think is expected because people are busy and have their lives to live. In my experience, the people that have been there for me the most have been the survivors. Some of them were great with information and helped me prepare for treatments. Some brought or sent gifts or dinner. Some of them just simply checked in on me from time to time. You'd be amazed how just a simple note or message from someone saying they are thinking about you will help your mindset. I even received gifts and notes from people I didn't know personally but knew my husband. Unfortunately, I think this highlights the fact that the people you thought were going to be the ones there for you, are in fact, absent. And I'm not going to lie, it can hurt. But I do feel like it has really been teaching me an important lesson through all of this.

I think people in general tend to be selfish. It is the human way, of course. To only stay focused on yourself and your goals. When I was graduating high school, I didn't really have a clear professional plan (I still don't!). I was interested in missions and serving in the church, but didn't feel a specific calling necessarily. They asked us to put our future plans in the yearbook and I racked my brain forever trying to figure out what to write. What I wound up writing was my future plans were "to help people". That's it. Seems simple enough. But all these years later, I definitely do not feel like I lived up to this even generic goal. What have I actually done to help people? It makes me sad and humbled. When I was in high school, I feel like I had a servant's heart. I was very involved in the church and served others constantly. But through the years, my heart has become hardened and selfish. I have not served others as I should. I have not shown Christ's love to others as I should. So recently, when I reflected on how I have been let down by others, I was quickly reminded of the way I have let other people down in the same way. Ouch. Instead of kind and caring, I have been selfish and self serving for a long time now. So, I have been praying for God to change me. To open my eyes and heart to others. To change my perspective and bring me back to that servant's heart that I used to have. After all, isn't that what a Christian is all about? To be like Christ, who was the ultimate servant for all of us.

"In your relationships with one another, have the same mindset as Christ Jesus: Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death - even death on a cross!" Philippians 2:5-8

Chemo Treatments

10/17/2023

It's been 2 months since my last update. The truth is since the chemo started, my brain has been a mess and oftentimes the days feel like a blur. I probably won't be able to remember all the details but here is a summary of my 3 chemo's so far.

After a long delay, my first chemo was on Tues, August 29th. The day itself was such a relief to me and I was excited to get to the next part of the journey. The doctor said she never had seem someone so excited to get chemo before. Side effects were mostly as expected, though the bone pain from the Neulasta shot was so bad the following weekend, I almost went to the ER. But I was able to take Advil to get it under control and since then, the Claritin they suggest to take has been keeping that pain under control. After treatment, I actually felt ok Wed and Thurs (just progressively more tired), but by Friday, I was having a lot of stomach effects. On Saturday, I still was able to attend some of Elijah's hockey games (leveling tournament) though. Sunday was the worst day with the bone pain. One of the worse parts of the chemo experience was (and is) the steroids they make you take the day before, day of and day after the chemo. They made me red in the face and chest, bloated, hungry all the time and give me insomnia.

Next chemo was 3 weeks later, on Tues, September 19th. Had a little trouble with the cooling cap machine but the treatment itself went fine. The side effects were similar to the first time, but my down days were a little more severe. I think Friday and Saturday were spent in bed. It is hard to describe to the complete fatigue I felt. This is about the time my hair started falling out. It's hard to describe what its like to hold a clump of your hair in your hand. It's devastating mentally. Even though you know "It's just hair, it will grow back" (which is not something that is helpful to us), it takes a toll on you mentally and especially emotionally. Even when it grows back, it will never be the same. Also, add that to the feeling of how ugly you are already feeling from your altered Frankenstein- looking body, your self esteem really takes a hit. Most of my hair shedding came from the top and lasted about from days 15-28 (before and after my 2nd chemo). I've lost about 60-70% of my hair maybe and mostly on the top. I wear hats and it still looks like I have hair since I still have it on the bottom. At least the hats keep me warm at the rink.

Third chemo was last week, Tues, October 10th. Each treatment, I seem to dread a little more so I did not have a great attitude on the day. I really didn't want to be there. I didn't like my nurse as much. I could not wait for it to be over and get out of there. Side effects of this treatment were similar again but always a little different than the ones before. My stomach was a lot more queasy with this one. I felt worse faster this time and my bad days seemed a little worse, as expected. Again, I spent two days, this time was Thursday and Friday in bed mostly. Also, the hot flashes were a lot of worse with this one. By Sunday, I was starting to feel the fog lift a little though. Chemo brain/fog has definitely been a huge side effect through all the treatments (some days better than others), which is probably why it's hard to write. All 3 chemo's also made me lose my taste, which is definitely no fun. It always seems to start coming back just in time for the next chemo. This is one of the worst parts for me because I love food. LOL

My next and final chemo is scheduled for Tues, October 31st (Halloween!). I am looking forward to it in the sense that I cannot wait for this part to be over. I really hope I never have to do this again. I am dreading it in the sense of all the side effects being the most severe afterward. But I am excited that there is a light at the end of the tunnel. I am almost there. And then I can move on to the next stage of radiation treatments. I am certain it cannot be any worse than this. 

1 Step Forward, 3 Steps Back

 

August 16, 2023

Everything about this cancer journey has been hard and filled with obstacles. It's so hard to have a good attitude about anything these days. So, I apologize in advance to anyone who reads this. 

I had surgery on August 4, 2023 to clean and restitch my wounds from the Lumpectomy/Breast Reduction surgery. The surgery itself went ok, as far as I can tell. Of course, the doctor was running late and it was delayed about 3 hours. 😞 They tried to threaten that I would have to stay in the hospital that night but luckily allowed me to go home with my compression socks. LOL The first night I was knocked out on pain meds. But I only took the one dose of pain meds and didn't need any more than that. And I actually felt much better with the open wound closed. 

I had my follow up with the surgeon on Wednesday, August 9th and after another lengthy wait and threats of him not showing up for hours, I finally saw him for all of 10-30 seconds. He looked at the wounds, said they look good and I'm good to have chemo 2 weeks from the surgery date. I also had an appointment with my oncologist earlier in the day and she said that I can start my chemo on August 22nd, as long as surgeon has ok'ed it. Progress is good and it seems we have a new timeline so I feel better about that.

After surgery, they gave me an antibiotic to take (Bactrim). After a couple days of taking it, I was feeling really bad. So I called and they prescribed another antibiotic to take instead, which I handled much better. On Thursday, August 10th they called me and said that the samples they sent out from the surgery showed that I did have an infection and so they had to give me a different antibiotic that would fight this particular infection. (I had to look it up but it was a bacterial infection). I was very surprised because I didn't even know that there were samples being sent for testing or that this was happening. Because this doctor does not believe in full communication with patients. When I picked up the antibiotic up, the pharmacist said, "Drink a lot of water with this medicine. Oh, and any extraneous exercise could cause your tendons to burst." 😟 I'm sorry, what?? When I get home, I see this medicine (Levofloxacin) comes with a lengthy 5 page addendum of all the terrible life threatening side effects it could have. The paper opens up with "Levofloxacin tablets, a fluoroquinolone antibiotic, can cause serious side effects. Some of these serious side effects can happen at the same time and could result in death." Well, yeah, sign me up then!! I am not gonna lie, I had a bit of freakout and definitely did not sleep that night, not knowing how I would react to them and thinking I could die at any moment. So, it was a rough couple days after first taking them. But so far, I have not had any life threatening side effects, so that is good! But nothing in this process seems easy and I hate that I have to count the days until I'm off this medicine so I don't have to worry anymore and I'm back on track. And my mental state has definitely taken another hit and I'm not sure how many more I can handle.

On Monday (Aug 14th), I talked to my nurse navigator to let her know what happened. She said that I would need to talk to the surgeons office to make sure I am still OK'ed for chemo since I got the ok before we found out about the infection and the antibiotics. 😡 I honestly didn't even think it would affect the timeline since I would be done with the pills before chemo. But, I begrudgingly called them. They call back and said he said I should delay my chemo another week. Of course, this sends me into another headspin. So, I asked how I know the infection is gone and she says I might need to see him again before chemo. Ugh. I feel like I'm going in circles. But of course, she needs to ask him and call me back. As of this point on Wed, Aug 16, I still have not heard back, even after leaving another message. Also, this means I have to call the oncologist and explain everything to them, too. When I do, it turns out my doctor is on vacation and her nurse it out. I asked the oncologists office if they could just call the surgeons office since I have to keep making all these phone calls back and forth and it's exhausting but I don't think she liked that question and I doubt they will do that. Cancer patients really need a secretary to help them deal with the back and forth between doctors. It is the most ridiculous thing I have had to deal with in this process. 

Anyway, the long and short of it is that my plans are once again in limbo. I am hoping that I will be able to start chemo on Tues, August 29th but I have no guarantees or even an appointment, at this point. The oncologist wants me to see her on Aug 22nd first. I just feel like this is never going to end and I'm so over it all. I really need to have all my treatments over before the end of the year. Don't even get me started on insurance. That is a total scam, too. At least I've made it through more than half of my "death pills" and not had terrible side effects. I'm counting the days when I'm done with those, for sure. Also, I have not been sleeping well still so that doesn't help with my mental state. I wish I could fast forward through the rest of this year. I hope and pray that I can start next year after all this and in a better place. 

School Update

 August 8, 2023

Copied from Facebook Post

Thank you all for all the prayers and messages. It's been a crazy and busy last couple of days. We have made a decision to enroll Moriah in Mid Cities Christian Academy for 6th grade this coming school year! Tonight was back to school night with sno cones and Hawaiian donuts.

Over the weekend, it all of a sudden became clear to me that I really needed to have a plan for Moriah for the new school year. With all the stuff going on with me, I have just not had the energy, time or mental capacity to deal with it.

Unfortunately, school has become a sort of bad word to me. Something that has caused me so much heartache, sorrow and even anger, at times. A couple years ago, it was clear to me that I needed to take my kids out of the system they were in but it has been a long journey to figure out where to go from there. Josiah finished his senior year this summer. Elijah has settled in to his online program and it gives him the flexibility to travel with hockey. So, that just left Moriah. I have never really felt led to homeschool but was doing it out of necessity. I have her on a waiting list for a charter school in Dallas but it was clear she wasn't going to make the cut. I have felt very lost and hopeless about the whole situation. Especially since I will be starting my chemo treatments soon and don't know what shape I'll be in for the next few months. And she deserves so much more.

Just at the perfect time, as He does, God arranged for us to learn about this small Christian school and worked it out so Moriah will be able to attend this fall. It definitely will be an adjustment and we are still trusting on God for things like finances, but I am trusting that this is His will for her and that she is going to learn and grow so much this year!

Funnily enough, I also went to Christian school for 6th-8th grades. It was Metuchen Christian Academy (MCA). Mid Cities reminds me SO much of the school I went to. Small, combined classes and even the same curriculum! I have been reminded of so many great times I had so long ago in my own journey! I am so thankful that God has provided this answer to prayer and am looking forward to seeing how He uses it for His glory!

An Unexpected Detour

August 1, 2023

Today was supposed to be my first chemo treatment. Unfortunately, it didn't go as planned. Well, it didn't go at all. Even though I was dreading it, I was also looking forward to starting it so I could get it over with. (Today is also our 25th wedding anniversary and the present my husband got was waiting all day in doctor's offices. Fun times!)

I think I mentioned before that I was having some trouble with a couple wounds not healing under my breasts. One much bigger than the other (the left side with the cancer). My plastic surgeon's office has not been great about anything really throughout this whole process. To the point that I am regretting my decision to opt for the breast reduction. The doctor himself had not seen me since the surgery and didn't even check the incisions when discharging me. All my follow up appointments have been with one of his PA's. She has a horrible bedside manner. The first appointment with her I waited longer than the appointment took and I didn't even wait that long. She rushed through like a Tasmanian devil, speaking very fast, not explaining much and pulling bandages off like I wasn't even a person. I did not even feel like a person with feelings in that visit. And it lasted all of 5-10 minutes. There was no one even there waiting but it was the end of the day so I assume she wanted to go home? Anyway, the last time I saw her was July 19th where she switched my bandages to wet to dry in order to pull some of the "stuff" off the wounds. (Sorry if TMI!). I also told her I was going to need chemo and she said make sure you eat a lot of protein during chemo. Didn't mention anything that my wounds really needed to be healed by then. So, I didn't think it was a big deal. Based on the every 2 weeks appointment schedule, I would have been seeing her August 2nd. But when I found out I was starting chemo on the 1st, I had called to see if I could see her yesterday, before chemo, (Mon July 31) since I didn't know how I would feel the day after. They said she would be out so I would have to see her the following Monday, August 8. Ugh. After this, the tape she used to cover the gauze made me bleed when I took it off in a couple days. And the wounds were looking different and I was confused if it was ok. So, I sent a message on their portal to let her know all that was going on. I got no response. Unfortunately, I had so much going on last week and I had my Power Port put in on Wednesday July 26th. After that day, I was SO tired to the point that Thursday and Friday I literally could not move my body at times. So, I unfortunately did not follow up.

This brings us to yesterday, where I had a follow up appointment with the Rehab. They are following up to make sure I am doing ok after the surgery with range of motion and also are looking at my wounds. Well, they did not like what they saw yesterday and knowing I was starting chemo today, they called Dr. Potter's (the surgeon who should not be named) office for me. Apparently, they do respond to other doctors fairly quickly. I got 2 phone calls in 10 minutes. They said I needed to postpone my chemo and I needed to see Dr. Potter himself to clear me for chemo. Of course, he wasn't in Monday though so it would have to be Tuesday. And that is was possible I would need to surgery to fix the wounds before chemo. And I needed to call my oncologist and tell her this. To say this put me in a tail spin of emotions seems like an understatement. I went from crying to yelling to just in utter disbelief. I guess this is what happens when you have too many doctors in the mix. They miss things and I had no idea that this could happen. They say once I get chemo there will be no healing, the rehab office said it would heal but much more slowly. When I called my oncologists office, they said they would leave the appointment and have my oncologist (Dr. Allada) look at it and determine if I was to have chemo or not. That way I wouldn't lose my spot if she said it looked ok.

Well, they have you take steroids the day before, day of and day after chemo. So they told me to go ahead and take them just in case. I took them Monday and in the morning today, my breasts were red and hot. I'm not sure if this had to do with the steroids or if there actually is infection (because I didn't have a fever). She said my white blood count was up and that could mean it was from the steroid or an infection, there wasn't really a way to know. But she said she didn't like my "angry breasts" (my favorite phrase of the day, LOL) and so I would not be having chemo today. But she said, I'm calling Dr. Potter and telling him he needs to see you this morning not in the afternoon. So, she did and they got my appointment moved up from 2:30pm to 11:30am. Unfortunately, the waiting there was slow and I didn't actually get called back until 12:45pm and didn't see the doctor to sometime after 1pm. I was sitting in that waiting room, trying not to have a Karen moment. I was so mad. Then I was so sad. All I kept thinking was, doing this breast reduction has been the biggest mistake of my life. Why did I do this to myself?? I am so stupid. I cannot even explain to you the roller coaster of emotions this journey has given me. 

So, we get to the room and who walks in but the PA. But she looks and then she says Dr. Potter will be in to see me. I was like whew. The Rehab had covered my bigger wound with a foam bandage and when she took it off, I thought it looked better honestly. But she seemed annoyed they used that bandage and said I had to go back to wet to dry bandages. But it looks and feels better, I'm thinking. Anyway, the doctor finally comes in and says that I have to get these wounds healed before I have chemo. Again, INFORMATION THAT WOULD HAVE BEEN HELPFUL YESTERDAY!! (Wedding Singer reference, LOL) So, he is going to have to do outpatient surgery to cut and restitch the wounds. They would set it up and it would probably be Thursday or Friday this week in Plano. They would call me. Well, they never did call me today, anyway. Not that I'm surprised. So I will have to call first thing tomorrow. He says it takes 2 weeks to heal from but I'm gonna see if my oncologist will be willing to try and do it 1 and half weeks (Aug 25th). I don't want it pushed back too far because honestly, I need to get all these things done before the end of the year (gotta love that insurance scam) and I only have so much time. I will be glad to get these wounds healed because they have been a nuisance for a long time (5 weeks). I just hate the way this happened. And think if they were treating me right all along, maybe it wouldn't have come to this. But hindsight is always clearer, isn't it. And the waiting again is excruciating. And he is the reason I had to wait on my surgery, too. By the way, In case you don't get it yet, I DO NOT recommend this plastic surgeon, if you know anyone looking.

Ok, now for the silver lining. There seems to be a theme that on these awful days, God does show up in the end. As we are leaving, we just make it on the elevator with another couple that has left the same doctor's office. The women says something about the wait and I was like, yeah, better get used to it or something like that. (Both times I have waited to see Dr. Potter, he was extremely behind and it took hours. Ridiculous, I know.) So, she starts talking to me about who did I see (she also sees Dr. Potter) and did I like him. Well...I was trying to figure out how to say no, not really but this was my first time with something like this and it is cancer related. This women, by the name of Cassie, starts talking to me about her journey with cancer and how many surgeries she has had and about to have one more. So, we start chatting about cancer and wound care and doctors and PA's. And then she asks, can I pray for you? It was like God put her there just for me. I cannot explain to you how much it meant to me and how easy it was to talk to her. She was so open and encouraging and it was just what I needed in my eleventh hour. I have been struggling so much lately with God being silent but then He does this and I'm like, Ok, you ARE there! Thank you, Jesus.

"I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."

Psalms 27:13-14

Surreal is the word, I think?

 July 24, 2023

"This cannot be real life." These are the words I keep repeating to myself daily, it seems. When they say this cancer changes your life, they are not kidding. In ways you expect and in ways you do not. From the way you look, to the way you feel to the things you can do comfortably still. My first experience with cancer (Thyroid) was a walk in a park compared to this. Easy Peasy. I know it was a different kind and different treatment. But it in no way prepared me for this new journey, that's for sure. 

Today is 4 weeks post surgery. Here is the update:

I am still SLOWLY recovering from the surgery. With the lumpectomy, I had a breast reduction. I figured, they might as well get rid of as much tissue as possible while they are in there. This recovery has been so much harder than I thought. I currently have an area (or two) that are not healing well. And everyday, I'm panicking about...is it infected? Do I call the Dr? What do I do? Why does my body hate me?? So the areas (one in particular) is still very stingy and uncomfortable. The plastic surgeon's told me that it would take 3 to 4 months to heal completely. 😢 It also does not help that when you look at yourself, you think Frankenstein's bride (or twin).

When they did the lumpectomy, they also did a sentinel lymph node biopsy. They took out 2 lymph nodes, in my case. One of these lymph nodes was found to have the cancer in it. And also, it was already starting to protrude outside of the lymph node (focal extranodal extension, to be exact). Definitely not was I was expecting or wanting to hear! This was supposed to be easy, remember? It's early, no big deal, women go through this all the time... It's amazing the way those words will come back to haunt you. With this being the case, I was told I would be having chemo, as well as the radiation. I am still struggling with this. Surreal is the only word I can think of to describe it. This is not how this is supposed to go. This cannot be real life.

So, off to see the radiation and medical oncologist I go. I got in to see the radiation oncologist first because they had a cancellation and it just worked out that way. He tells us the process and it all sounds ok. Because of my age, 6 weeks (30 treatments) of radiation. But it doesn't sound too awful so I think "I can handle this." He says well you are not ready for radiation (based on the surgery healing) but go see your medical oncologist and let us know if you have to do chemo first. No problem.

We met with the medical oncologist on July 13th. She seems serious. This must be more serious than I thought. I definitely need chemo, but she is unsure of the kind. She mentions "the red devil" and 4 or 6 months possible. I will lose my hair, even if I use a cooling cap and in fact, the cap might not be practical because of the amounts of treatment and might just give me a headache). Obviously, we are concerned about the lymph node protrudal. She cannot decide on treatment until she has some more information. So, that means a nice day of tests and scans at the hospital. She sets up orders for the test, does some blood work and says I will need a port put in for the chemo. And also orders an extra test on the biopsied lymph node (to test for Her2 again). We set up an appointment for the next week to find out results and where we go from here.

The day of the scans was long and I was so tired and hungry. I got there at 8 and didn't leave until 1. I came home, ate and and took a long nap. They did a bone scan, CT scan of Abdomen and Chest and Echocardiogram. The whole week was actually exhausting as I had medical appointments all week (except Friday). 

On Thursday, July 20th, we met with the medical oncologist again to see what the plan is. The good news was the scans showed no spread! So that was the best news. I still need to have chemo but now she was suggesting a different course. (TC instead of AC-T). I will still lose my hair, but she seemed more hopeful about using the cooling cap, this time. So, all that is somewhat of a relief. She was still undecided about doing a 4 dose or 6 dose treatment. So, surprisingly to me, she asked me what I wanted to do. I of course told her, less is more and I would like the 4 doses, please. (Of course, understanding that more could possibly make it less likely to come back, but there is no way to really know that). She agreed and so the plan is set. I got my Chemo binder, set my chemo class time and have to get my port placed (I have horrible veins).

I will start chemo on August 1st (Frank and I will be celebrating 25 years in style!). I will have 4 doses of TC (Docetaxel + Cyclophosphamide) every 3 weeks. I am going to try and use the Paxman Cooling cap to at best, reduce hair loss or at worst, have it regrow back faster after treatment. I have been bombarded with information about what could happen and what I can take or do to prevent or combat it. My head is often spinning. I am so scared that scared isn't even the word. Maybe petrified is the word? After chemo is done, then I will start my 6 week radiation plan. (The only thing that could change my course now is the Her2 Fish results that they had to order on the lymph node. Pray for negative.) I am happy to have a plan though and all I can do is make the best of it. But it all seems so hard and scary. Once I have the first treatment, I'm sure it will be better knowing how my body will react. I will have the port placed this Wednesday, July 26th. Did you know they put you under to have this done?? It's an outpatient procedure. Not looking forward to it, either.

While there was some good news, the path is still long and hard. And I still feel very much alone. I pray but it seems God is so far. It's like in Harry Potter, when Dumbledore is avoiding and ignoring Harry because he has a connection to Voldemort. Harry, of course, does not understand why this is. He says, I feel more alone than ever. Boy, do I feel those words. I am not sure why God is silent to me at this time. And I'm not sure why He wants me to go through this. All I can do is trust there is a reason and plan for all this. 

My song through all this is Truth I'm Standing On by Leanna Crawford.

… Scared, oh I thought I knew scared
Now I'm so filled with fear
I can barely move

… Doubts, I've had my share of doubts
But never more than right now
I'm wondering where are You

… Here on the edge of fall apart
Somehow Your promises
Find my troubled heart

… This is the truth I'm standing on
Even when all my strength is gone
You are faithful forever
And I know You'll never
Let me fall

… Right now, I'm choosing to believe
Someday soon, I'll look back and see
All the pain had a purpose
Your plan was perfect all along
This is the truth I'm standing on

Link to song: https://youtu.be/vrWdkziEuyA

Losing the Mental Battle

Flowers from my boys

6-30-23

My breast cancer surgery finally happened on Monday, 6-26-23. I should be happy. I should be relieved. This whole process has been the most frustrating and awful experience of my life. From the "it's early, you are lucky and will be fine" to the too LONG wait for surgery because "there are more important people in front of me" and doctors have to take vacations to the day of surgery and not knowing if insurance was going to pay for part of it and just how much this is all going to cost.

Communications from doctor's offices are awful. It's been 4 days later and I still don't know, did they get all the cancer out with clear margins? how many lymph nodes did they take to test? Doctor was hoping the pathology would be back by today (since next week is a holiday) but it's after 5 and I haven't heard anything so I'm not hopeful. 

The first nurse I had after my surgery was absolutely awful. She was a mix of nervousness and ignorance that should not be allowed near patients. I was so nauseous from the anesthesia. She said there was a better medicine I could have but they couldn't put it in my regular IV. They would have to find another line. Also, it could turn my hand black if they did it wrong (I'm sorry, what? Oh yeah, sign me up for that, then). She couldn't find a vein so she got these vein specialists to come and they scanned my arms and told me there weren't any good ones, so tough luck. It's not exactly the experience you want to have when you are feeling so bad already. Luckily, the next nurse that took over restored my faith in nurses. She was able to get a line the first time, it didn't really hurt even. She couldn't believe the things the other lady told me and laughed about the black hand part. I told her I didn't want to leave with a hand like Dumbledore. 

Discharge was awful. Second surgeon didn't show up until 7pm or even after. Didn't even check my wounds and said if you want to go home, I can make it happen. Apparently, he didn't tell the nurses though. When they finally caught on (Oh, he's discharging you for tonight??), it was long drawn out process because the meds he called in for me, 1 was out of stock and then he didn't even call in one I asked him for (which never got done). So, they had to get all that figured out. It took hours while I sat there in limbo not knowing what was going on. They tried giving the best discharge instructions but they were basic, at best and also contradictory (take a shower in 3 days vs don't take a shower until your drains come out). Clear as mud. I HATE the drains. They are probably the worst post op thing I've ever had to deal with. I'm still so unsure about the dressings. They said I could change them but when I looked today to do that, it seemed like an insurmountable task. So many bandages with so much tape and I'm not even sure I have enough supplies. (Oh sweet Jesus, what has been done). And to do it without disturbing the drains seems very unlikely. My follow up appointment where they hopefully will remove drains is not till next Wednesday because of the holiday and I am dreading the next 5 days more than any I ever have. 

I stopped taking the pain meds late Wednesday because I hated the way they made me feel. Like I wasn't even here and all I did was sleep. But now, I can't sleep at all. Not because of pain but my insomnia is the worst it's ever been and I'm losing my mind half the time. There's nothing to do. I am tired but can't go to sleep. When I do doze off, I have the weirdest dreams.

My mental state is the worst it's been in this journey. I am a mess. Everyday seems like a chore. Everything seems so hard. And after these next 2 to 3 weeks, guess what? I am finally graced with an oncologist's presence so I can do more great things, like radiation! And then, I get to take some pill that destroys some people's lives with side effects for 5 years! Oh, yay!

I don't want to. I didn't ask for this. I never wanted any of this. And I cannot express to you the immense feelings of loneliness. And it's not because people are not there. I had people there with me and have people around me now and many checking in. But they don't get it. If they've never gone through it, they don't and won't understand. It's so hard to process and explain and by the time you do process one thing, the moment has passed and nothing makes sense again. The next 2 months just seem so bleak to me. I know there are good things but I don't see them right now. All I see is dread, fear, and exhaustion that knows no bounds. Maybe a long time from now, I will be grateful for this time in my life. But that time is not now.

Because I don't want to end this on such a terrible thought, I will talk about two bright spots this week. There is a hockey mom I met a little while back. Our sons have done things together here and there but they do not play on the same teams. She took it upon herself to make sure she knew when my surgery was and when she could deliver us some food. Turns out it was exactly what we needed when we needed it. I am so thankful I didn't have to worry about my family eating on top of everything I was experiencing. She doesn't even know me that well and doesn't live close by. But she is an angel and her act of kindness was so appreciated!

The other bright spot was the second nurse I had. She was amazing. She restored my faith in nurses that night and I'm not even joking. She was kind and gentle (like her name, Gentille). And knew what she was doing. She was also the nurse at discharge and she said I was one of her favorite patients and was sad to see me go. I wouldn't have minded to spend the night in her care, honestly. But, I also did want to go home and not be hooked up to so many things (and to not have to pay for another night of services!).

Anyway, I'm sorry for all the negativeness. I hope by venting and getting some of it out, it will help me move forward even if only just to sleep better tonight.

Unexpected News

April 1, 2023

I don't what it is about this time of year, but the last week of March, first week of April are particularly hard times for me and my family. Here are a few things in particular that have happened this time of year in the past.

April 1, 2002, My mom passed away from ovarian cancer

April 3, 2003 I found out I had thyroid cancer, which also happened to be my mom's birthday

March 31, 2021 at 2am woke to our outdoor kitchen on fire in the backyard. The fire just made it to the house as the firefighters put it out. A very scary event for all of us!

Now, I have another unfortunate event to add to this list. 

Yesterday, on March 31st, I was diagnosed with breast cancer. 

The last two weeks have been a bit of whirlwind, you might say. Last Monday, March 20th, I had my yearly mammogram. A small mass was seen so I was scheduled for an ultrasound, and then ultimately a biopsy on Wednesday. By Friday (yesterday), I was told it was indeed cancer. It all seems a bit surreal still. 

The good thing is that it was caught early and it is small. (Ladies, if you are over 40, please be sure to get your yearly mammograms!) We are still waiting on a couple more test results to come back, but at this point, I am told it should be a standard procedure of surgery, possibly radiation and then hormone therapy and done. I expect to be fine just uncomfortable getting there! I do have as positive an attitude you can have with this news. But it is the process of all these things (and their costs!) that isn't going to be very fun. We have a meeting with the surgeon next Tuesday, where we hopefully will get some more information on how to go forward. 

The other good news is that I am not alone. I have family and friends that will support me. But the biggest support I have is Christ. I know He is with me, just as He was with me through my mom's illness and death and my journey with thyroid cancer. He will be the one to get me through this and use it for His purpose and glory.

"Even though I walk through the darkest valley, I will fear no evil, for You are with me" 

Psalms 23:4

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete." 

James 1:2-4

Disappointment

3/8/2023, 3/19/2023

There was a game. Yes, it was a youth hockey game. It was an important game. Winning meant you go to the National's to represent your state. Losing meant your season is over. So, yeah, a pretty important game. Well, unexpectedly to many, they lost. It was heartbreaking. Some things happened in the game that destroyed me. There were two plays that haunted me for a week. I could not sleep thinking about them. It wasn't just the plays themselves but the people that were involved in the plays and how my son was treated in those plays. I know I shouldn't care so much, but I can't help it. I feel hurt over it, as stupid as it sounds. And I feel he was robbed of an experience he worked so hard to get to. (Sidenote: Even though I was very hurt by these plays, my son's reaction was "it's just hockey" so he didn't take it the same way I did. He is much more easygoing and a turn the other cheek type of person and I'm happy about that!)

I thought this blog entry would be to just complain about this specific game, but as some time has passed, it has turned into something else. I took that loss the hardest I've ever taken one of my son's losses. It's been two weeks now and I still can't sleep. I have had to struggle with why it was affecting me so much. I have had to analyze my deep hurt feelings for something that I should seemingly just brush off. It's just a game. He's only 15. It's not that big a deal. So, why does it feel like such a big deal to me, even still?

This past hockey season we have contemplated many decisions and possible ideas of what the future could hold for us and for our son. We have literally considered moving hundreds of miles away so he could play better hockey. So he could play with kids that were nicer, better and would accept him. (Of course, we could never know if that would even happen or he would just be an outsider but it was nice to think about). And not to say that kids he plays with now are not nice, but there are only a couple that he would say are his friends or that he could relate to. The week before this tournament, he tried to tell me that probably half the kids on his team didn't care if they won or lost. I thought that was ridiculous and that he was wrong. Why play travel hockey if you didn't want to win? Why let your parents spend all that money for something you didn't even care about that much? Unfortunately, after playing this most important game of the season and arguably his whole hockey career so far, he told me how the kids reacted in the locker room and how he was right. This just made me all the more angry and hurt. Some of those guys let their teammates down and that's just how it is.

3/29/2023

It has taken me weeks but I finally feel like the feelings of hurt and disappoint have subsided a little for me. It still sucks that Elijah was robbed of this great opportunity but as they say, everything happens for a reason. I am working on coping better with life's disappointments, with God's help.

At 45, I still don't know what I'm doing!

2/20/23

Here I am again. I noticed a pattern to this blog. Between 1-3 times a year, my thoughts become too much for me and I have to get them out so I can start sleeping again. The funny thing is that I am always writing in my head. I actually love to write. Maybe it is what I am supposed to be doing in life but just didn't realize it or make it happen, I don't know. Or maybe it's just something I love to do when I can, when I'm overwhelmed, when I'm not pressured to do so. The crazy thing is that even though I love to write and I'm constantly "writing" things in my head, I don't usually share them. Mostly because I don't think anyone will care. And sometimes my thoughts can go off the rails. And I'm sure my type of writing isn't for everyone. Also, it's funny because sometimes the "writing" in my head is so loud, that it actually feels as if I said it to someone. Maybe that means I'm crazy. I probably am. 

Anyway, I jumped on here because of the same reasons as always. I am full of anxiety and fear and need a way to get the loud thoughts out of my head. I am not sleeping well because my brain won't shut up sometimes. I am so tired. I read my last entry written last year and I definitely still can relate to it. I feel alone, a lot. I should mention though, that I do have 1 tried and true friend, that is a homeschooler and has been my saving grace for this year. Yes, I continue to homeschool this year because I am a crazy person (and because certain places can't be trusted). But it is a little different this year because I teamed up with this saving grace and she allows me to take my daughter there so she can teach her with her kids 3 days of the week. The other days, I am to make sure she does her other work or get her to do other work. And I can honestly say, I am not good at even that! Whatever part of the brain it is that makes you want to stand next to your kids and watch every thing they are doing and make sure they do everything they have to and are doing it correctly, well, mine broke. I feel like I may have had this part of the brain at one point, but it is long gone. I think I'm just too old now. It's hard enough to talk myself into doing the things I have to do, nevermind talking my strong-willed, stubborn daughter into doing the things she has to do (and usually doesn't want to). But the fact that I cannot be trusted even 2 days a week has cemented my feelings that something has to change on the homeschool front. So, we have been working on a plan to get her back in school. It will either require moving entirely or putting her in a place that will totally inconvenience me to get her back and forth from. Sigh. Nothing is really easy these days.

The other thing is I should really get a job. Turns out that having a son who plays travel hockey and high school hockey is way more expensive that even we wanted to admit. And now that we have had to face the facts, any extra money would be most beneficial to us at this point. Unfortunately, with the schedules we have and trying to take into account future schooling opportunities, I have no idea what working would look like. Of course, remote would be my best option but have you seen the remote "jobs" lately? Most of them seem like made up scams. Then, you add in part-time remote opportunities and yikes. And if I'm being completely honest, I don't really want to work right now in my life. The kids are getting older but they are still needy and in the back of my mind, I know before we know it, one or more of them will be gone. I also have so many other things (hobbies) I want to do and projects I want to tackle in the house. When will those things get done? There is also this overwhelming feeling I get sometimes that I was made for more than this. That there is something else I am supposed to be doing, some sort of ministry or calling, but I just can't grasp what "it" is. The years are flying by and here I am, still trying to "figure it out". It is all so overwhelming and exhausting. 

Sadly, at 45, I still don't know what I'm doing in most everything in life. I don't have a career and I still don't know what I want to be when I "grow up". I feel like I fail daily at being and mom and wife. I am overwhelmed and stressed. I have so much anxiety about so many things. I have very few people I can completely confide in. I have been hurt so much, that I am guarded and wary of people. And yet I still yearn to be part of a group or community that I fit into. That just seems insane, really. Unfortunately, I think I've finally realized that it just isn't going to happen for me. If I haven't find my place in this world at this point, I don't think I will. It's a sad realization I've come to in the last few weeks. Some people thrive in groups and I want to be those people! But, I think I'm too weird. I have a dry and weird sense of humor. I'm also introverted and shy so it's so hard for me to speak up. And maybe, most people just don't get me. And I think I just have to accept that. I have gone into situations telling myself, just don't talk about this or just remember to say or don't say this or that or sometimes I just tell myself please, for the love of God, try not to talk at all! And then maybe, just maybe, they will like you. Well, I can tell you, it doesn't work. We are who we are. People need to take me or leave me as I am. Most leave me and I am working on accepting that.

My family is another whole story. I don't want to say too much but the hurt I have felt from my family in the last few years is almost debilitating to me. I try to say that things don't bother me and honestly, I try not to think about it. Because it hurts too much when I do. It's true, that I did move away so yes, some of it is on me. But in today's day and age, there are many ways to keep in touch. But they are not enough and I am forgotten and ignored. And sometimes being ignored is the worst feeling of all. Because it means you don't matter anymore. Out of sight, out of mind. I do know some of it is my fault. But not all of it. And thinking about how a family can just forget you so easily, it does hurt. The biggest hurt in all of it is that my kids will never really know my side of the family. Besides my brother and sister, they still don't know who most of my family is. It sucks. But then I think, it's their loss. But really, it's all of our losses. When I have grandkids, I cannot wait to smother them with grandmotherly love! Oh believe me, they will wish I would ignore them! And I guess that is the only thing to do, look forward to better days WAY in the future. Haha.

I'm not really sure what the point of this is except to vent honestly. And, also that as much as I hate to say it, people need people. And I think all anyone really wants is to be loved and accepted. And maybe it shouldn't be hard, but it is.

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Matthew 6:25-34