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