3 Years

3 Years

Everyone has some sort of before-and-after event in their life. Some have more than one. Some have to think about what their event is. Mine happened three years ago. I tend to call it pre/post chemo because it’s easier than saying pre/post cancer. I was told in August 3 years ago that I had breast cancer. Three years ago today I found out that I had triple negative breast cancer. Three years ago tomorrow I was told I would have to receive an echo, port, chemo, surgery, possible radiation, and would be off work for the next 7 months and I only had a week to prepare.

At that moment, I became one of many statistics

• One in eight women who develop breast cancer

• One of the 9% under 45 that develop breast cancer

• One in 100,000 women who develop triple negative breast cancer

• One of 17% that develop lymphedema after surgery

• One of the 1-4% of cancer survivors who develop a second unrelated cancer (the skin cancer spots on each of my big toes

• One of the over 50% of cancer patients who undergo chemo

• One in eleven Americans with PTSD

• Hoping to be one of the 77% that survive 5 years after TNBC

I’m also one of the many people whose Hogwarts letter must have gotten lost by a directionally challenged owl. Unfortunately that means I missed the Hogwarts Express today. The muggle version I visited in December will have to suffice.

Do Not Be Afraid, I Have Redeemed You

Do Not Be Afraid, I Have Redeemed You

It’s early 2023. When I opened up my Google Doc to write a Blog post, I was shocked to see that the last one I had posted was in December 2021. It either seems like just yesterday that I posted it, or I thought for sure that I posted something more recently. Probably a combination of both.

I’m approaching the 2 year mark since finishing chemo and having surgery for breast cancer. It’s been just over a year since the “probable” melanoma was removed from my toes. It doesn’t seem like it was that long ago. Both feel like they just happened. 

My left toe finally looks pretty normal, but it’s doubtful that my right toenail will ever look normal. I had to get creative just to be able to trim it. I accomplished this task with one of Brad’s Dremel grinders. If you ever want to experience a peculiar sensation, take a Dremel or some sort of grinder to your big toe nail. Now I know why my dog isn’t crazy about the process when I do her nails, lol. 

Last summer I finally made the decision to have my port removed. I could have had it removed in the fall of 2021, but I decided to wait. Call it fear or doubt of an unknown future and potentially needing it after having it removed. Either way I finally made the decision to have it removed. My surgical oncologist had a med student with her when I went in for the port removal. They did it all in a regular exam room with local anesthesia. The med student pretty much performed the whole thing with the doctor explaining and guiding the whole time. I found it fun and interesting. I piped in with my own questions and comments and the whole process was incredibly smooth. It took several months to get used to the fact that I no longer had a port or catheter going into my jugular. I’d rub my hand along my collar bone and just stop for a second, then remember that I didn’t have it anymore. I still catch myself expecting it to be there every so often. It seems like life after a cancer diagnosis and treatment is sometimes all about adapting to various changes, emotions, and worries. 

After all the treatments and everything ended, I decided it was time to drastically change my diet. There’s a lot of science behind diet and cancer, but it’s not what you may think. It’s not just about “cutting out sugar.” It’s about the types of macros (proteins, carbs, fats) that a particular cancer primarily feeds on. I haven’t dug deep into the science of triple negative and melanoma, but decided that with both of them showing up, I was going to limit all three macros. Last year, my partner teacher and I started our diet/lifestyle change together, which made it so much easier. I have drastically cut sugar (both artificial and natural), carbs, fats, proteins and animal products. In a sense I’m on a Keto Vegan diet. Do I still enjoy my occasional mocha latte with almond milk? Absolutely. Do I still enjoy all my favorite food during the holidays? You betcha. Do I still order or fix the occasional pizza? For sure. I’ve also found some great new recipes. The change also eliminated my low back pain that had started to return. It’s not surprising considering I cut out almost everything that causes inflammation. 

My chemo fog has drastically improved. I started drinking a daily mix that improves cognitive function for a month. After 2 weeks of drinking it daily, I suddenly noticed a huge difference. My mind still isn’t quite as good as it was before, but it’s a lot closer. Even Brad noticed a difference within weeks. I don’t drink it everyday anymore, but I still keep it handy for those days when I can’t think of things, or communicate something that is in my head. 

Last year I took a chance with a new job at my school. I knew the job would be posted, I saw it posted, and I was NOT going to apply for it. I still enjoyed the classroom and the kids. It wasn’t until a few days before the deadline that God started to make it clear to me through several circumstances that I should apply for the job. I haven’t regretted it since. I coordinate testing for the entire district and administer some of it also. The other part of my job is helping out with technology. I still get to help the teachers, and work with kids once in a while. 

It occurred to me recently that I probably wouldn’t be alive today if I hadn’t found the tumor and started treatment almost 3 years ago. With the speed at which TNBC spreads, if I had ignored everything and done nothing, it probably would have spread like wildfire. It’s a sobering thought to say the least. Combine that with having an unrelated second cancer on both toes, and I don’t have the words to describe what it does to you emotionally and mentally. Most days I’m just fine. Then there are moments and stretches of time when it feels like a crushing weight. There is also the panic and anxiety that comes with every new bump, skin spot, ache or pain. Did one of the cancers spread? Do I still have abnormal cancerous stem cells floating around in my body? Is one of them going to latch onto my lung, or start growing in my bones? Will I have a new spot show up on my skin that has spread beyond the epidermis? It’s a dark, deep hole that I can find myself going down sometimes. 

But I just keep taking one day at a time, remind myself that my story isn’t over yet, and keep on going. Sometimes I recite this verse to myself several times a day. 

But now, God ’s Message, the God who made you in the first place, Jacob, the One who got you started, Israel: 

Do not be afraid, I have redeemed you. 

I have called you by name. You are mine. 

When you’re in over your head, I’ll be there with you. 

When you’re in rough waters, you will not go down. 

When you’re between a rock and a hard place, it won’t be a dead end— 

Because I am God, your personal God, 

The Holy of Israel, your Savior. 

I paid a huge price for you: 

all of Egypt, with rich Cush and Seba thrown in! 

That’s how much you mean to me! 

That’s how much I love you! 

I’d sell off the whole world to get you back, 

trade the creation just for you.

Isaiah 43:1‭-‬4 MSG

Surviving

The only person who can truly understand what a cancer patient goes through is another cancer patient. Even at that, it can vary so much. There are the types of cancer, staging, types of treatments, clinical trials, the nitty-gritty details of the cancer cells, and other things that make each cancer case unique. But despite all of that, people who have had cancer connect on a different level. 

The same goes for those that care for cancer patients. Especially the caregivers that have to witness loved ones deal with harsh or failed treatments. It’s not easy to watch, just as it’s not easy to actually go through it. 

It seems that when you discover you have cancer, suddenly you know so many other people that have dealt with it. With that knowledge also comes the counting and the statistics. It would be great if everyone that dealt with cancer lived a long happy life. But that doesn’t happen. Statistically, some of the people you know that have cancer, are going to lose their life to cancer. It’s hard to hear about someone’s cancer returning, it’s harder to know they are dying. It’s hard to wonder why it’s them and it’s not you. It’s hard to not wonder if you’ll be next. Whether it’s a friend, acquaintance, friend of a friend, Facebook connection, whoever, it’s a punch to the gut every time someone says, “It’s stage 4,” “It’s spread to my brain/lung/bones/whatever,” “They found a new tumor.” Quite frankly, it scares the *$@% out of me every time it happens, whether I know them personally or not. My mind goes crazy with scenarios. Am I going to develop cancer again? If so, what stage will it be when we find it? Will it be in 6 months, 6 years, longer? Will I be able to beat it? Will it be a recurrence or something new? Maybe I’ll be “lucky” and never have to deal with cancer again. Don’t get me wrong, that would be great. But part of me wonders why I “deserve” to survive and a mom with young kids doesn’t. I tell myself that maybe God’s not done with me yet, but that isn’t usually a comforting answer. Survivor’s guilt sounds crazy. Why would someone feel guilty for being alive? The same way I wonder “Why me” when I got my diagnoses of TNBC and melanoma, I also wonder “Why me” as I continue to survive. 

Life will never be normal for me again, but I’m adapting to my new normal. Part of my new normal is dealing with scanxiety, PTSD and survivor’s guilt. I’m also heavily weighing some major health and wellness changes. I’m currently reading a book by Jane McLelland called “How to Starve Cancer.” It’s pretty brilliantly written. She approached her cancer(s) with a mix of conventional medicine, diet, supplements, and off-label medicine. It’s fascinating to read about how she dealt with things and researched so much information. She used herself as a guinea pig, and had to find a doctor that would actually collaborate with her, rather than just pass judgment and think she was crazy. I’m only a little ways into the book, so we'll see what I decide.  

Still Waiting

Have you ever had a big needle jammed in your toe? Okay, so maybe it wasn't jammed in, and it was pretty small, but good grief it was awful. And why do they always say things like, “You’re doing great. Just breathe.” If I could breathe while you did this, I would, but that’s not possible right now, because I’m trying not to kick you. But realistically, no matter what they say at that point, it would be ridiculous. Except maybe, “I know this hurts like !*$@%#^, but give me 20 more seconds and you’ll be good. Then you can breathe.” I not only had to have the procedure on one toe, both BOTH of my big toes. AND I had to go back twice for the left toe, AND three times for the right. If you’re keeping track (starting with the initial biopsy), that means I have gotten numbing shots in my toes 3 times on the left, 4 times on the right, for a total of 7 times total, which is 7 too many. 

The moles on both toes came back as Melanoma In Situ, aka Stage 0. That means it was all contained to the surface level of the epidermis and I need no further treatment. This does make me super paranoid about every other mole on my body, and genetics have “blessed” me with a lot of moles. My skin check appointment over Christmas break says it will take 20 minutes. All I can say is that she will be very busy for 20 minutes. 

Let me backtrack for a minute. Tumor board recommended that both moles be removed (excised) and checked for clear margins. They did what’s called a Slow Mohs procedure. With a regular Mohs procedure, they can check the pathology on site and you know before you leave if you need to have more removed. With melanoma, the biopsies need to be sent off site, so you don’t know until the next day whether or not you need to return. I’m going to break down what happened as best I can. 

• Thursday, October 21st
• Taught in the AM
• Appointment #1 in the PM - Slow Mohs done on both toes. Tissue was sent to Indianapolis that night. Get home and try to keep my feet elevated for 48 hours.  
• Friday, October 22nd
• I got a call saying that margins were not clear and I needed to come back Monday. 
• Monday, October 25th
• Teach Monday AM
• Appointment #2 in the PM - Not only were the moles in identical locations on both toes, but the area in which he had to remove more was identical on both toes. He had to cut farther into my toenail on both toes. Removing more of my toenail was pretty easy due to the Hand Foot Syndrome I had been dealing with all summer from the chemo pills. It had basically made my toenails lose. Not only have I been the topic of a couple Tumor Boards at Parkview, but I have now gained a reputation with the pathologist in Indy also. Not really the kind of attention I want. Time to start my 48 hours of foot elevation all over. 
• Tuesday, October 26th
• Get the phone call that I need to go back in. 
• Appointment #3 - Clear margins on the left side, so we’re good on that side. The right is a whole nother story. They don’t know if the margins on the right are clear, because there wasn’t an epidermis (top layer of skin) on the tissue that was sent. It’s suspected that when the nail was lifted from the skin, that the epidermis stuck to the nail due to the trauma caused by the Hand Foot Syndrome. So this time he checks things out, makes sure that nothing sticks to the nail, and ends up removing pretty much the whole toenail on the right side. He left part of it attached so that the nail could lay on top and protect it while healing. I’m basically supposed to clip it off as it starts to annoy me. Restart the 48 hour elevation clock for my right foot. 
• Wednesday, October 27th
• Eventually I check MyChart results when I haven’t heard anything by lunch. Once again, there was no epidermis to check. Now I sit and wait for a phone call or something. 
• The doctor called me a few hours later. Remember the Hand Foot Syndrome I mentioned 60 seconds ago? Well, guess what? This is about to get more bizarre and complicated. Our best guess is that I don’t have any epidermis left under that toenail due to the Hand Foot Syndrome. All summer, off and on, I would have puss seeping out from the side of my toenail. That puss was probably the rather unpleasant remains of my epidermis leaching out from under the toenails. He said I had two options. 
• Option #1 - We keep cutting on the toe. But the chances we would find any epidermis is pretty slim. He would end up cutting into the nail bed, which would start causing other issues. It was not the route he recommended.
• Option #2 - We keep an eye on it. Chances are pretty high that he got it all. He and the other dermatologist would go this route. This is the option I chose. 

Through this whole process, watching them work on my toe while it was numb was fascinating. I know most people wouldn’t want to watch, but I was all for it. It’s kind of like an out-of-body experience. You know it’s your foot, but you can’t feel a thing. After he finished cutting, the nurse would cauterize it. It’s one thing not to feel the knife hacking away, but to not feel the cauterization either? It was crazy. I figured for sure that the pain would be pretty intense later. They recommended tylenol for pain. Really? That’s it? Turns out, I only needed tylenol for part of a day after one or two of the procedures. I didn’t think about the fact that all of the nerves would have been cut out when the tissue was removed. So the only pain I ever really felt was sometimes around the edges of the incisions. 

In case you're interested in seeing some pictures, here is a link to the toe healing process. I have to keep the wounds covered during my shower. Afterwards I hop up on the kitchen counter, put my feet in the sink, and let the water run over them for a few. Then I let them dry while I play around on my tablet before putting ointment on them and wrapping them up again. 

So now I wait a little longer to take a breath and relax. I’ll wait until after the skin check at Christmas. But then I’ll wait until after the toe follow-up in February. And then I’ll wait until after the next follow-up with the next doctor. There may never really be a point where I feel like I can breathe and relax. It will probably be something that comes slowly over time. Without a doubt, fear and anxiety will always pop-up, triggered by so many different and random things. #CancerSucks 

Shifting Sand

In June I had some cording return in my arm. I started up the exercises again, and was doing some major purging of junk in our basement. Suddenly the cording was gone. Then I started noticing that the back of my hand was swollen. That was a sure sign of lymphedema. I followed up with my oncology breast surgeon who confirmed my suspicion. The swelling went away pretty quickly and easily with some massage and exercises, but I now need to wear a compression arm sleeve on my left arm. Oh joy. At least it’s my left and not my right. Lymphedema can’t be cured, it can only be managed. Some people have hardly any trouble managing it, for others it's a huge issue and can be fatal. 

Once in July and once in August, C-Diff made it’s lovely return. No hospitalizations this time, but it still wasn’t pleasant. Thank goodness insurance pays for the meds. I nicknamed this medicine “My Gold Plated Pills.”

After monitoring for several weeks, my oncology breast surgeon is also very certain that the two lumps I found (one on each breast) are just scar tissue. Praise God for that. 

Hand Foot Syndrome (completely different from hand, foot, mouth disease) that my oral chemo, Xeloda, caused has been a real treat also. I couldn’t hardly walk for a while because of the pain. It’s basically burning from the inside out. My toenails were taking a real hit, especially my big toes. Some of my toenails are so small now that I barely have anything left. They just kept separating farther and farther back the nail. As of now, they are no longer burning or swollen, and I think that they have finished peeling (mostly). They look rather pink, and I still don’t have fingerprints. 

While I was dealing with hand foot syndrome, I pointed out the mole on my left toe that had started to kind of spread out. We weren’t sure if it had changed because of hand foot syndrome or something else. My oncologist likes to err on the side of caution, so she referred me to dermatology. I was told that I needed to wait for dermatology to call me because they were so backed up and busy. A couple weeks later I finally called dermatology to schedule an appointment, since I hadn’t heard from them yet. At the appointment, they decided to take biopsies from both of my big toes. Two weeks later, they weren’t sure whether they were cancerous or not, so they sent them out for more testing. Apparently I was quite the discussion at the Tumor Board. Another week later, and the results came in for the right toe. It’s malignant (cancerous) and considered melanoma. The left side also shows that it’s cancerous, but there is more testing being done on that sample because they aren’t sure what kind of cancer it is. They told me they would be discussing my case again at the Tumor Board to decide on how much they need to take out of my toe. This mole is right at the corner of my toenail, so it won’t be easy or pleasant. Staging and everything else can’t be decided until after the procedure and biopsy results come back. But it’s probably not good that I have a cancerous lesion on both feet. I can’t help but wonder if it originated somewhere else.

 

Last year when I got my cancer diagnosis, I was worried and scared. This time I’m angry and scared. Come to find out, women who have had breast cancer are 15-20% more likely to get melanoma than women who have never had breast cancer. Women who have had melanoma are around 11% more likely to get breast cancer. There is a definite link, and wouldn’t you know, I fall into that statistic. So I go from having one type of really aggressive cancer to having another type of really aggressive cancer. Isn’t that just peachy? 

To be honest, the last week has been tough. I’ve had a lot of anger, even more worry, my brain is scattered in different directions, and I’ve held it together surprisingly well for my students. 

One of the messages that seems to keep hitting me over the last year is being dependent on God. A recent sermon at my church talked about how when Moses and the Israelites were in the desert being bitten by snakes, God didn’t remove the snakes when the people prayed. Instead, God commanded Moses to forge a snake and put it on a pole so that anyone who looked upon it would be healed. God provided a way through their trial, he didn’t take it away. I pray that God provides a way through these trials of mine. My prayer is that the way through these trials is a complete healing by being dependent on God. Realistically, I don’t know if that is what will happen. God doesn’t always provide healing from cancer, and that’s a very scary reality. I continue to hope and I continue to pray. I continue to trust in God’s plan, even if it’s not the plan I want. We live in a fallen world, and what I’m going through is a direct result of living in a fallen world. I don’t blame God, I blame sin. 

I’ve struggled with different titles for this post. Usually I have the title figured out, and a general idea of what I will be typing. Not this time. I’m too angry. To be honest, half the titles that have popped into my head are inappropriate.

The title of this blog finally came to me while doing my Chosen Bible Study. I had just finished Lesson 7, You Are Established. Within Lesson 7 is a section that really resonated with me. Even more so a few days after reading it. The section is called Shifting Sand. 

We live in an unpredictable world. There are natural disasters, terrorist attacks, car crashes, and cancer... While there’s definitely order in creation (math, science, patterns, logic), there’s also chaos and complexity.... 

The truth is we can’t fathom all that God has made, and we certainly can’t control it. And that freaks us out. We fear life’s apparent instability because we strongly desire the opposite. We want to know our needs will be met. We want to be safe and healthy and know that we’ll have enough money to make ends meet. We want to feel solid ground beneath our feet…

Take heart, Matthew. Because all the things we don’t know and can't control point us to the One who does know and can control and is. 

The Dark Side of Cancer

I’m really more of a Stargate and Star Trek girl, but Star Wars is okay too, and the reference was convenient. 

You would think that the dark side of cancer is the obvious chemo, radiation, surgery, or the many, many side effects from all the meds they give. Those things are all easy for me. I can tolerate all that. They may be annoying, painful, or miserable at times, but it’s bearable.

The dark side is when they delay or decrease a treatment, and you panic that because of the delay or decrease, the cancer may come back.

The dark side is knowing that soon you won’t be on any treatment, and the cancer may come back.

The dark side is worrying the cancer is back, even though you're on treatment. 

The dark side is planning a vacation in a year, not knowing if you’ll have the energy or be back on treatment because the cancer came back.

The dark side is when you feel the shooting pains of nerves regrowing, and you fear it’s cancer. 

The dark side is wondering if you’ll outlive your grandparents, or even your parents. I mean, in an ideal world, I’m supposed to outlive my grandparents and parents, but will I? 

The dark side is not knowing if or when the cancer will return. The other day I caught myself saying, “When it comes back…” It’s not a premonition, it’s just that sometimes your mind goes to the worst case scenario. 

The dark side is finding yourself thinking about funeral plans, and wondering if you should write or video your own eulogy. 

The dark side is finding a lump in one breast and something weird in the other breast. FYI: Both have been ruled as scar tissue. 

The dark side is panicking when the plan is to see the nurse practitioner, but the doctor wants to see you instead. 

The dark side is essentially dealing with mild PTSD that pops up unexpectedly. Example: Seeing crushed ice made me nauseous the other day, all because I had to eat crushed ice while being given Red Devil. 

The dark side is not feeling like you can’t celebrate being cancer free, because what if you're not?

What do I do when the dark side pops up? Sometimes I just let myself panic or dwell on the thoughts, but I keep it brief. It’s not healthy to completely avoid dealing with worst case scenarios. So I run with the thoughts for a while sometimes. But then I remind myself that no matter when I die, God’s got me. I know where I’m going. I just don’t know when. Do I want more time on this earth? Absolutely. There are places I want to visit, more students I want to teach, more family and friends I want to spend time with. If that isn’t what happens, then I will make the most of the time I have here. The most important thing I remind myself of is that I have a choice in how I respond to any given situation. I can be bitter and angry, but how on earth is that helpful to anyone, including myself? I might as well be optimistic and deal with things as they come. When Jesus was asked in Matthew 22:36-40 what commandment was the most important, he replied with two. Love God with all your heart, mind and soul. Love others as you love yourself. Everything in life boils down to love. Love God, love others. That’s what I plan to do for whatever time I have left on this side of Heaven. And we all know that this world needs a whole lotta love right now. 

Hospitalization & God's Perfect Timing

After I finished my meds from the 2nd cycle of Xeloda, I fully expected to feel crummy for a few days. Sure enough, I started to feel crummy. I would compare my symptoms to others that were in a Xeloda group I had joined on FB. It confirmed my symptoms and timing. It was very common to feel worse on the off week because you now have 2 weeks of meds that have built up in your system that are wreaking havoc. The three most common side effects of Xeloda are Hand Foot Syndrome, tiredness, and diarrhea. I had all three. Each day I kept thinking, “Tomorrow I should start feeling better.” I spent the weekend on the coach, barely moving, barely eating, and barely drinking. It’s easy to think, “Oh, I’ll just force myself to eat or drink.” Yeah, good luck with that. I look up my symptoms/side effects and see it’s nothing unexpected. Unpleasant, yes, unexpected, not so much. Just for your own reference, here’s a list of SOME of the Xeloda side effects from WebMD.

“Nausea, vomiting, loss of appetite, constipation, tiredness, weakness, headache, dizziness, trouble sleeping, or changes in taste may occur. Nausea and vomiting can be severe. In some cases, your doctor may prescribe medication to prevent or relieve nausea and vomiting.”

Up to that point, I’d had all of those side effects over the weekend except for vomiting. Monday morning I just felt a little different, so I randomly decided to take my temperature, and bingo, 102+ temp here I go. Who knows if I had a temp over the weekend. I called the doctor with my list of issues. Random fact, apparently I can’t video chat with my doctor because we are in different states. I practically live on the state line, I feel this is a bit ridiculous, but what do I know? Anyway, the doctor wants me to get blood work at a local hospital to make sure it isn’t something serious. A friend took me for the bloodwork, which came back okay. I was told to update them in the morning with how I was doing. I sent a message in mychart in the morning with my symptoms. I added vomiting to the list, plus everything else I’d been documenting. The nurse called and her exact words when I answered were, “Oh Crystal, you’re a trainwreck.” Oddly enough, it made me feel better. It justified to me that something was definitely going on, and it wasn’t just something I needed to suffer through. They moved my 3:30 appt up to 1:30 so that I could get fluids after the appointment before infusion closed for the day. 

Once at the doctors office, a repeat of bloodwork still didn’t show anything concerning. She laid out 2 options. Option 1 - Go down to infusion, get some fluids, and if that’s all it took, we were good to go. If it didn’t work, I’d go to the ER. Option 2 - Go to ER where they can give me fluids, do an infectious blood workup, and I don’t have to worry about them closing. I can be down there as long as needed. The doctor really wanted option 2, and I knew that was the option I needed to go with. They asked me if I wanted to walk out and we drive around to the ER or if I wanted to go in the wheelchair. I had no interest in walking any farther than I had to. I’m not that proud. I was exhausted and didn’t care. I took the wheelchair ride while Brad drove around to meet us. 

It took about 30 minutes to get into the ER, but they hooked me up with a lot of fluids, IV antibiotics, bloodwork, warm blankets, and a really comfy gurney. The biggest concern was figuring out what was causing the fever. Deciding which of my symptoms were actually from the Xeloda, and which ones were being caused by something else. At one point I couldn’t stop shaking and shivering. I figured this was due in part to not being used to the air conditioning, plus they were pushing fluids into me about as fast as they could. I got a few more warm blankets and then slept a little while. Then I got really warm for a while. They decided to admit me because they knew something else was going on, with the fever, chills, sweats and everything else. 

I was certainly feeling better after the fluids, but there was no doubt that I was not great. After a long night of being woken up frequently to take meds and check vitals, results came back in the morning that I had C-Diff, something I’m pretty familiar with from working in the hospital. It’s a bacteria that hangs out in your intestines. It is contagious, but only through your 💩, so you do the math on that one. The vast majority of people that come down with it, get it as a result of being on antibiotics. I was on massive doses of clindamycin for quite a while. I made sure to eat plenty of yogurt while on it, but it wasn't enough. Clindamycin will basically wipe out all the good bacteria in your gut, leaving other bad bacteria to take over, which is what happened in my case. So, we now had an answer to the fever, and we had an antidote. An expensive little pill that is pretty much only used to treat C-Diff. 

The great thing about staying in the hospital is that there is a great selection of food, even if I did pick at it. I got to order lots of fruit, which made me happy. The downside is the mattress I had was the most uncomfy thing. It had a packed down, off center, depression in the middle of the mattress that couldn’t be avoided. I couldn’t hardly sleep there. It was partly because of the mattress and my room couldn’t be made dark, but I swear one of the meds was messing with my sleep/visions every time I closed my eyes to sleep. I also got a room with no bathroom. Go figure. Let’s put the c-diff patient in a room with no restroom so she has to use the commode. I didn’t even know patient rooms without bathrooms existed in the developed world. 1st world problems I guess. 

Funny thing about the symptoms of c-diff, they are mostly the same as the side effects of Xeloda: severe diarrhea, fever, stomach tenderness or pain, loss of appetite, nausea. The only symptom I didn’t have was stomach tenderness. Which is why my oncologist ordered the c-diff test right away, but we had to wait for results. 

My blood cultures have all come back negative, so that also tells us it was only the c-diff causing all the problems. After being admitted Tuesday night, I got to come home Thursday. I lost about 12 pounds throughout this ordeal. But I consider that my chemo weight that I had gained since September. I’m not eager to gain those 12 pounds back. I’m actually closer to what I weighed a year ago, so I’ll take that. I’m slowly getting my appetite back. I’m drinking some Ensure Clear drinks the nutritionists recommended that are pretty good. I’m picking food that is easy on the gut and protein that is easily digested. 

Throughout this whole process of being sick and admitted I just kept thanking God for his timing. This could have happened during the school year, but it didn’t. It could have happened on the weekend I went to visit my Grandfather in TN who isn’t doing well, but it didn’t. It could have happened while camping, which is scheduled here shortly, but it didn’t. It could have happened when the family was gathering at Pokagon this year, but it didn’t. I’m so thankful for God’s timing. It just reminds me again that He is in control. Whatever may happen, and whenever it happens, His hand is in it one way or another, in ways you may or may not ever see.  We just have to trust in Him. Even when it’s hard. Even when it’s not what we want. Even if it breaks our heart. After all, this world is just a temporary home. The next one is going to be so much better. 

Hand Foot Syndrome

Oh the lovely side effects of Xeloda. I had been hoping and assuming that since my experience with the other 3 chemos hadn’t been that bad (granted, I was still miserable, but compared to others, I lucked out) that I would breeze through this one as well with minimum issues and nothing that serious. No such luck this time. 

Xeloda is given in what they call cycles. It’s also one that is used for select cancers. As far as breast cancer goes, Triple Negative is the only one it helps. I’m taking it because even though margins and lymph nodes were clear, there was still some tumor left. That means the ACT didn’t kill all the cancer cells in the tumor, and in case any cancer cells escaped during surgery or traveled somewhere, this will hopefully kill them. You take Xeloda for two weeks, then you’re off for a week to let your body heal. Side effects tend to pile up towards the end of the two weeks on, so that the week off, you may be pretty miserable. My first cycle on it wasn’t too bad. As I was ending the 2 weeks on, I got pretty tired, my hands and feet hurt some, and I had some diarrhea. All VERY common with this chemo drug. It all cleared up in a few days, and I was back to normal. I had plans to start up my Xbox workout. I figured that if I couldn’t walk the treadmill, I could at least workout on my mat and do my Yoga and Cross fit.

Then I started the 2nd cycle. Yes, this statement deserves it’s own special little paragraph.

Cycle 2 did not go as smoothly as the 1st. Within days of starting on the meds, my hands and feet started hurting again. My fingers were swelling, they were turning red, dark red, almost purple, and they were getting warm. By the end of the 2 weeks on the meds, the diarrhea had returned, the surface of my fingers were becoming numb as the outer skin was dying, and the tissue underneath was hot and hurting. I couldn't button my blue jeans, I couldn’t hardly write or pick fuzz off my shirt,, brushing my teeth hurt, using silverware hurt, walking hurt. Anything you can think of that involves using your hands or feet, it hurts. It wasn’t fun. It was annoying. I started developing all sorts of tricks. Use the handle of a knife to seal zip-lock bags, use needle-nose pliers to get into individually packaged pills and peel wrappers off things like yogurt, use a 3rd grader to open a bottle of water, those kinds of things. I was not above asking for help from anyone. My doc and I are still baffled by the fact that I had to stop wearing my fitbit, because even where the wristband set on my wrist, it was doing funky things to my skin. Needless to say, I’ve been using lots of lotion and I’ve used up almost an entire tin of Bag Balm putting it on my hands and feet at night. 

Currently, I’ve taken an extra week off of Xeloda to allow myself to heal and I will be starting back up at a lower dose. So on my second week off the meds, the skin is peeling off my hands like a snake. This isn’t just the one of 2 layers of skin you may lose after a sunburn. I’m pretty sure this is all 7 layers. I can’t open my phone with my fingerprint anymore because I don’t have enough of a fingerprint left after the skin peeled off. Really glad that this wasn’t the year I needed to get a background check for school, lol. I’m constantly peeling skin off my fingers. They feel extra tender, so I still have to use all my opening hacks on bottles and such. Waiting for my feet to start peeling next. I’ll be testing my flexibility when that happens.  

Finishing the School Year

I returned to school in early March, 3 weeks after my surgery. It was wonderful to get out of the house and distract myself from sitting at home with my own thoughts. I’m an introvert by nature, and have no problem being by myself, but this has been different. It’s not like I’d been perfectly healthy and able to catch-up on everything around and house and just relax. Unless you’ve been through chemo, you don’t understand the physical and mental toll it takes on you, being stuck at home and not able to do stuff. I either didn’t have the energy to do all the things I would have liked, or I didn't have the mental capacity to handle it, literally. A nurse who accessed my port recently, who has been around for a while, mentioned that for years patients would tell them that their brains just felt foggy, but doctors brushed it off and said it was nothing. Now they know it’s not just nothing, and it has a name, Chemo Brain.

I had asked if my long term sub could stay for a few days when I returned so we could transition teaching back to me. To my surprise, they kept her on for 3 weeks. There were several reasons behind the decision, but I feel that the biggest reason was one that God has his hand in it. The very outside end of my incision on both sides were not healing as fast as they should have been. So 3 days before spring break, I had to go in for a follow up procedure on the right side (the left healed on it’s on). God knew this was coming, and it’s why he kept the sub with me. She was able to take back over for those 3 days, and no one had to worry about anything. The doctor went in, checked for infection, cut out the tissue that wasn’t healing, and stitched together new, healthy tissue. It healed like a charm, 

I closed out the year dealing with some rather unpleasant side effects of Hand Foot Syndrome. But 3rd graders are always willing to help, so I gave all my little munchkins jobs to do in my classroom so that I had to do very little to get it ready for summer. 

My hair is growing back, but I don't have many pictures. I'm a minimalist when it comes to appearance. It's one of the reasons the whole wig thing just didn't appeal to me. We buzzed my head before surgery in February, then I had the back and sides buzzed again in May. My next appointment is tomorrow. I plan to try to crazy styles as it grows out. This is one of the few that I have. Oh, and my heart shaped white spot came back! 

After Surgery and Pathology Report

Most of the people reading this blog live in the Tri-State area of IN-OH-MI. So if you remember back to the weather we had the night before my surgery, you'll remember that Feb. 15th & 16th involved the worst winter weather we've had in a couple years. It was expected that we would be getting about a foot of snow throughout the day Monday and into the night. The weekend leading to my surgery, I had mentioned to Brad the idea of going to Ft. Wayne Monday night and getting a hotel room so that we didn't have to worry about travelling in drifting snow. The response I got was totally predictable. It was along the lines of, "I'm not worried. I know we can get there. I have an all wheel drive truck." You know, that typical "guy" response. I let him know that hotel rooms were less than $100, and his decision was fine with me. 

As I've mentioned before, I'm a planner. So it's no surprise that I had 2 bags packed to take to the hospital. The first bag was stuff Brad or I needed before or after surgery (cell phone, tablet chargers, mastectomy pillows, etc.) The second bag was a few necessities in the unlikely event I was admitted overnight. While Brad was at work Monday, and I'm watching weather updates, I started thinking about the items I would need in case he decided to head to Ft. Wayne that night. I even had supper ready to pull out of the oven when he got home. Internally, I laughed when he walked in the door Monday at 4:30 and said, "We need to make a decision." He had decided the drive home wasn't exactly pleasant, and what would it look like tomorrow morning since this snow storm was just getting started? Did he really want the stress and worry about getting to the hospital in time? We ate quickly, threw a few essentials in a bag, including snacks, my surgical drink and the Hibiclens soap I needed to use before surgery. I reserved a hotel room for $70 from Brad's phone on our way (they had an awesome President's Day Special). We had gotten the last room at Comfort Suites, and they had to keep telling people they were booked. While at the hotel we watched out the window as things went from non stop drive-thru traffic at Culver's, to closed down and empty by 8pm. I wasn't really concerned about surgery being delayed. I've worked in healthcare enough to know that surgeries like this being cancelled for weather is not common. Surgeons will make it in. Period. 

In the morning, Brad ventured out in the morning to find breakfast. He wasn't successful finding food, but he helped half a dozen people who were stuck. After his little adventure, we drove the half mile to the hospital. The lady who registered me for surgery told me that she lived 4 minutes away and got stuck in her driveway. She had to call her son to bring her to work. They took really good care of me at the hospital, despite the cranky guy next door in pre-op who apparently didn't realize that he needed someone to drive him home after surgery. He eventually settled down once he was finally able to get someone to agree to pick him up afterwards. I kinda wonder if his friends were avoiding him. He certainly wasn't pleasant. Imagine my surprise when I met two additional doctors that would be part of my surgery. I'd have 4 doctors in there. The anesthesiologist was a doctor, then there was my plastic surgeon, the breast surgeon, and a second breast surgeon that assists to speed up the process. With that many talented people, I figured I was in good hands. They gave me 5 pills to take, and gave me something in my IV that the nurse said is comparable to 2 Long Island Iced Teas. Well, combine that with the pills, and don't remember even getting close to the surgery room. 

While I was in surgery, Brad did find some food. He tells me that the hospital cafeteria had amazing lobster rolls. I'll take his word for it. All I know is pretty soon the post-op nurse wanted me to wake up, and all I wanted to do was curl up and sleep. I would have no such luck though. She was insistent. They got me dressed and had me use the bathroom, and we were on our way home before dark (which was the nurse's goal). I have about 5 minutes worth of memory of being in post-op before I was out the door. I took over Brad's recliner, as I wasn't to sleep on my side. Plus getting up out of a recliner is easier than getting up out of a bed. It is the weirdest sensation, knowing what all has been done to you, thinking you should be hurting, but not feeling the pain. They gave me some pain pills, but I didn't feel the need to take them. The only time I hurt was when I would first stand up, but the pain wasn't horrible, and it would go away pretty quick. I did decide to take one on Thursday, just to see if getting up would be easier, but honestly, I couldn't tell a difference. Basically the nerve block the breast surgeon gave me was amazing, and it's only just beginning to wear off 2 weeks later. 😁

Brad was home with me to help me the first week. My mom was with me the second week. Each day I was a little more independent. Brad would see me putting my socks on and say, "I'm right here." Have you ever had someone put your socks on for you? Half the time, there is something wrong with how they did it. It's twisted, pulled too far, pants got tucked in, something. Plus, I wasn't about to let people keep doing things for me. I'm not going to get better just sitting and not moving and stretching. Which is what brought about my 3D puzzle project that Brad picked up at Costco back in January. Way cheaper than Legos, but it's the same concept. It was perfect at getting my arms stretching and moving. I worked on moving my arms, but I wasn't allowed to lift my elbow above my shoulder, not that I would have been able to. Try moving around for the day without using your arms to reposition yourself, lift yourself up, or raising your arms. It's annoying. It's been getting better, slowly. 

They put in 2 drains to help drain fluid after surgery. That's just weird, to have these tubes coming out your sides, draining into these little bulbs that we have to empty and measure 2x a day. I am very glad I bought the mastectomy shirt on Amazon that had pockets and straps inside for drains. It made life much more pleasant. The drains came out 1 week after surgery. The drains coming out was probably the most pain I've had during this whole process. But the pain only lasted 5-10 seconds per side, and it was done. 

Pathology

March 1st I had 4 appointments. They started at 10am and went until 4:00. All agreed that I could return to work, as long as I was careful and not picking up any 3rd graders (not likely😂). Plastics said the fluid retention on my right side will go away, and gave me some more antibiotics as a preventive measure. Physical Therapy said they are happy with everything so far, and gave me new exercises. Breast surgery and oncology said that everything is healing nicely. A total of 6 lymph nodes were taken out, and all of those were clear. There was also at least 4mm of clear surgical margins where the tumor was removed. My Radiation Oncologist does not recommend radiation.🎉 The tumor shrank from 22mm to 9mm. Because it didn't completely melt, it puts me at higher risk of recurrence. To try to decrease the chance of recurrence, I will be taking Xeloda for 4-5 months. It's a chemotherapy pill that has been shown to help Triple Negative patients. I'll probably start that in late March, or whenever Plastics gives the all clear. Xeloda does not have all the short or long term side effects that AC-T does. The biggest side effect with this one is Hand Foot Syndrome. It's essentially the chemo leaching out onto the palms and feet, which causes all sorts of discomfort, sores, and pain. That can be a point of prayer, as well not having a recurrence, and getting full flexibility back in my arms, especially the left arm where lymph nodes were removed. 

I also want to make this point, do your self breast examinations and get your mammogram.. A regular, plain M&M is about 10mm wide. The residual tumor they took out was just barely smaller than this. My oncologist, breast surgeon, and myself couldn't feel it, and we all knew where to search for it. I may have been able to get this whole thing rolling a little sooner by doing self checks. It may have only been a couple months, but a couple months can matter. It can be the difference between it making it to your lymph nodes or not. Who knows. For women 40 and up, you can get a mammogram, which will pick up the stuff you can't feel. It just so happened that I had just turned 40 last year, but I honestly wasn't planning on a mammogram. If I had made the appointment for a physical and mammogram when I turned 40, it probably would have been caught 4 months earlier, and at an earlier stage. The earlier it's caught the better, especially for something like TNBC. So check yourselves, and get a mammogram.

Here's some pictures of the 3D puzzle I was putting together.