A Tuesday update…and gratitude

I can’t help but laugh at the fact that I caught my first post-chemo cold this time last year. I have yet again caught a cold. Jacob had it early last week, then Joe so it was only a matter of time before it made its way to me. The congestion is not awesome but thankfully I don’t have a fever so it just needs to run its course. I am also grateful that it is my off week so my body can fight a little harder this week to battle this virus!

Today was a busy day. I had radiation and met with the doctor afterwards as I normally do on Tuesdays. My skin is quite pink and peeling everywhere but my armpit is the most painful. Just about every time I move my arm, I am reminded of the radiated area. You don’t realize how much you move during your sleep! It wakes me up a lot but at least I fall back asleep. J The radiation oncologist says my skin looks great compared to when I first started – so wonderful to hear that! My skin nodules (breast cancer) are completely gone with the exception of the one that I had biopsied. I assume it’s scar tissue around the biopsy site since I can literally see where the stitches were. She wants to see me again on Friday to determine how I’m doing and if I should take a few days off after the 20 before doing the 5 boost treatments. She wants to focus on where the breast cancer on my skin was and my lymph nodes. It’s hard to feel the lymph node in my armpit right now but I would guess it is at least a sixth of the size that it was…barely even there! The lymph node in my neck can’t even be felt anymore. Such great progress. I keep reminding myself that a few weeks of pain and discomfort from this radiation is worth it to make this cancer disappear from those areas. And we are almost done – day 15 was today!

I met with my oncologist afterwards and we had a nice long chat with my million or so questions. J It was a nice conversation and I was greeted with a big hug. My feet feel significantly better today, despite the blister that formed from hand & foot syndrome over the weekend. The oncologist said that since it started at the end of chemo that is a sign that it was time for the week break for sure. We will see how the next round goes and then reassess whether or not to lower the dosage. I am hesitant to do that only because it appears to be working. At the same time, why do I want to subject my body to a higher dose if I don’t need to? Oh, the things to consider… I’ve been having lower back pain since about the time that my feet started hurting. This is obviously concerning because I have cancer in my pelvic bones. It is significantly better today and yesterday though. I spoke with my oncologist about it and he said it was likely a result of my white blood cell count causing bone pain in that particular area. That was a previous chemo reaction too, yikes. It was pretty painful so I am curious if I have it with this next dose as well.

My blood work also looks good, considering it is my off week. While my white / red blood cells, platelets and hemoglobin are technically low, it’s good news that they are higher this week. I certainly don’t want to take any more time off than I need.

So today, my prayers are of gratitude. I am grateful that this chemo appears to be working. I am grateful that despite the side effects of radiation, everything seems to be responding to it. I am grateful for a team of doctors that I truly appreciate and that they whole-heartedly support (and encourage!) every second opinion that I receive. I am grateful for today because despite this cold, I am here and able to snuggle my dear husband and little man.

I am also grateful for the gift of time…in so many ways. Stay well, friends – and spread that love!

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The true balancing act

Sometimes I write an entire post, save it and leave it on my computer. It sits there, untouched until I happen to come across it in my search of something. Today, this happened. I found a post that I called The balancing act. This post was written just two months ago and as I read it, I realized that my thoughts have already shifted ever-so-slightly from the way I felt when I first wrote it. Yes, I still feel a slight pang or a slight worry every time we talk of the future. But with each passing day, despite still undergoing treatment, I feel a little less afraid and a little more secure. It feels good to know that time does actually heal the mind along with the body. No, the future is still not guaranteed, but I am now looking forward to it as if it were, and yet still enjoying the everyday moments in life. That, for me, is the true balancing act.

Here is my prior post, written February 27th:

I read a quote on a blog I follow the other day. It said that writers often write about what they need to hear (sorry, despite searching I can’t locate the post that I read this in). Seems obvious, right? Well, I reread it a few times and it left me thinking quite a bit. This blog began as a way to share my story and yet somehow it also transitioned into a way for me to talk to myself too. So today, I’m going to do just that. I’m going to write about something that is on my mind regularly but that I don’t speak about often. But, it’s something that I need to hear and maybe, just maybe, someone else does too.

I’ve mentioned before that if cancer teaches you nothing is, it is that life is short. Each day is a blessing and needs to be embraced like a long lost friend. I am grateful for the life that I am blessed to have and the family and friends that share it with me.

Have I beaten cancer? – YES!

Is cancer gone from my life forever? …yes?

I tend to be the type of person who overthinks and overanalyzes and questions each decision that I make because I want to ensure that I am truly making the best decision. Now, I have certainly had my fair share of split decisions and regrets but that has taught me to take my time and think through the decision before making it. I weigh the pros and cons of each, sometimes to exhaustion, and decide which choice is the right one. Cancer adds a layer of complexity to my decision making. A layer that I hate having and yet a voice in my head never lets me forget to consider.

This voice often asks me, will you be here?

It’s a question that has no answer and frankly, if it did, I don’t know that I would want to know it. But it’s there. The ever lingering question that has no purpose but to make my heart feel a slight pang and my breath catch a little.

See, the think about this question, is that it has always been there. Every day and every decision that we make, we rely heavily on the fact that tomorrow will be there and the day after that will be too. But it isn’t guaranteed and I probably should have been paying more attention to that fact long before cancer came knocking.

So every decision that I make, big or small, is a balancing act. I weigh my options and once I’ve mostly made up my mind, the little voice pipes up and asks will you be here? This causes my heart rate to rise slightly and break just a little. Then I think rationally through the question. If the answer is no, would I be putting my family in a poor predicament? If the answer is yes, will we be able to enjoy it?

Fun facts about skin care during radiation

As I prepare for day 2 of radiation, I thought I’d share a few fun facts about what I can / cannot do for the next 6+ weeks:

  • Moisturize daily – Start immediately upon beginning radiation and apply twice a day but not 4 hours prior to radiation
  • Use a mild soap such as Dove and avoid soaps with fragrance
  • Do not use a loofah, scrub brush or sponge
  • Do not rub skin dry, pat only
  • Take short, lukewarm or cool baths / showers
  • Deodorant only, no antiperspirant
  • No shaving on side that is being treated
  • No sun exposure to area being treated (which is halfway up my neck! And it’s already 80 here…eek…)
  • Keep area being radiated covered when in the sun
  • Wear loose fitting shirts, preferably cotton
  • Avoid chlorine pools and swimming in the ocean (Nooooooo!!!) as these can be irritating and drying to the skin

Yeesh! I know it’ll be worth it but my goodness that’s a lot to remember. I keep hoping chemo fog will eventually get better…I suppose testing my memory with a list like this helps! J

 

Radiation time!

I take back what I said yesterday about the hardest part of the radiation prep process being the removal of the stickers. The hardest part was actually scrubbing off all of that marker. Ouch! I still had faint lines all over my chest when I arrived for radiation today….and then had more drawn! The technicians needed to take more films of my radiation area, particularly around my clavicle today so that’s why there were more lines drawn. Additional lines were also drawn to line up where the technicians would place the bolus, which is used to help radiate more (for me) (google it, it’s so weird looking).

This additional films took a little time; I was moved around and repositioned a bit and then we were ready to start. If I had to guess, the total amount of time that I was actually being radiated was….maybe 3 minutes? I had to hold my breath a total of 5 times, one time for only 3 seconds and the remaining between 17 – 23 seconds based on my counts. The radiation machine moved around my body to align the beams to the area being treated. It’s interesting because when the machine is over my head, I can see the lead parts inside of the machine move. The entire area of the beam is pretty large and is perfectly square, maybe about the size of a 10×10 inch tile. The lead parts (I don’t know what they are actually called) inside move around and form the exact shape that is being radiated on my chest. So I don’t receive the entire square of the radiation beam, just the area that the lead parts form. Neat, huh?

The technicians are in a room off to the side but they can see me through a window & cameras and can also hear me throughout the entire treatment. When they tell me to hold my breath, they can tell whether or not I am breathing in too much or too little based on the way the beams align to the marks on me.

As I laid on the table, receiving my first dose, I thought about how amazing this process is. It doesn’t hurt at all (right now, that will likely change in the coming weeks) and yet I know it is destroying me inside, for the purpose of helping to keep the cancer away. It is such a pretty red light that can do such incredible damage.

Next, I saw the radiation oncologist (who I’ll see every Tuesday throughout this process) and we talked again about the side effects of treatment and what to expect. I asked a lot of questions to help refresh my memory based on the notes that I had taken. I asked if she had a preference of the lotion to use, since there were about 6 listed on the sheet. She suggested a product called Miaderm, which is pricey but works best, mixed with a few drops of Calendula Oil twice a day. Since I am so fair skinned, I can expect to have a pretty decent reaction so I opted to try the better stuff in the hopes of helping alleviate some of the redness / burning. Here’s hoping!

I asked about the fatigue, which shouldn’t be as bad as it was during chemo but she did indicate that people my age tend to feel the fatigue much worse. Let’s hope it isn’t too bad.

After all that fun, I headed to my checkup with the oncologist. I had lots of questions as usual and he helped answer them all. My blood work looks great and he believes (or has no reason not to believe) that once my body is fully healed from all of these treatments, that I will move on and be completely healthy. I can’t express how good it felt to hear that.

So, day one done. Only 29 more to go! Actually, maybe less. I learned today that I will have 25 “normal” rounds of radiation and then 5 “booster” rounds that will target the scar tissue around that area. Scar tissue is where cancer tends to return so she plans to booster the radiation during the last week. However, the entire 5 days may or may not be necessary…it all depends on how my body reacts and the amount of scar tissue. Hopefully I won’t need all 5!

I’m going to attempt to remove this marker again…anyone have a good trick?! The rubbing alcohol and makeup removing wipes are not working wonders yet…

Life is precious

Today I am reminded of how precious life is.

I learned this morning that a woman I met at the CHHO in November lost her battle with breast cancer last night. As I stared at the picture of her, I could feel my heart begin to ache. I remember hearing her introduce herself and sharing that she had a son. I remember the way her voice cracked as she said she was Stage 4 and that the cancer had spread to her bones. I remember the way my heart ached for her that day, as it aches for her again now. Though I only met her once, she left an impact on me.

As I thought about what her family, her friends and her son are going through right now, I broke down. I cried, a lot. There were big sobs and heavy tears and a lot of yelling despite being alone. I cried for this woman and her family and I cried for me and mine. I cried because cancer does not discriminate. I cried because cancer is selfish. I cried because I hate cancer. I cried because it was all that I could do.

And then I stopped. I wiped the tears from my face and stood up tall. I reminded myself that I am blessed to be here. I reminded myself that I need to continue living the life that I want to live. I need to follow my dreams and make every effort possible to make them a reality. I need to love hard, embrace every moment and let go of the things that cause me worry. I need to live. Because that is what I am here to do.

This is the only life I have and I want to make it the best life that it could possibly be.

Rest in peace, Traci. I pray for you, your family and your friends to find peace.

Dolphin view

Dolphin view 031716

Their jumps appeared random, tossing them out of the water for just an instant before they plunged back down into the blue surf. The waves were light that day, though they swam so close to shore that they seemed caught at the sand bar, between the sets of waves breaking. They didn’t seem to notice the current though, as they swam about freely; their dorsal fins bobbing up and down sporadically.

The swimmers didn’t seem to notice how close the creatures were, despite how many were just over the water’s crest. She imagined herself swimming amongst them, splashing throughout the ocean in search of food. The speed in which they traveled today, slow and circular, was nowhere near the speed of which she knew they were capable.

She wondered what dolphins think about. Do they have dreams, goals, ambitions? Or do they live for the moment, relying on instinct that has been perfected? Do they wander freely throughout the ocean, without care or concern?

A movement to the right caught her eye and she looked in time to see a small figure jump completely out of the water, causing her breath to catch at the magnificence of its leap. Glancing up, she peered at the sky above where the dolphins played. Though it was clear now, she could see the clouds rolling; their darkness casting a shadow across the sand behind her.

Sitting for another moment, she then waved good bye to the dolphins and the seagulls that fly overhead. Holding her sandals in her hand, she began walking away from the peaceful sound of the waves rolling up the shore. Unsure of how severe it will be, she braced herself against the storm, ready to take on whatever came her way.

What a weekend!

I learned from my wig purchases that in order to have certain cancer related purchases covered by insurance, I would need to purchase them through an in-network provider. There are only a handful of providers that are in-network for post-mastectomy supplies, with the closest one being 2 hours away. Saturday morning, we rose early and headed to the other side of Florida to go to one of these stores.

It was an interesting experience and only took about an hour. I was fitted for new bras and a silicone insert to even myself out. I was pleasantly surprised by the overall outcome, though the bras themselves aren’t anything exciting. It’s a little disappointing that the bras available for post-mastectomy surgery aren’t a closer match to what I would find in a department store, though they are quite comfortable. It may be a little challenging when dressing because of the bra styles but I’ll figure it out.

Though the visit ended up costing me some money out of pocket (apparently insurance only covers a certain amount of the bra cost and the consumer pays the difference), I am glad that I went and was able to get fitted properly. I also purchase a post-mastectomy bathing suit that can hold the implant. Now that it’s warming up in Florida, I hope to get good use from this purchase!

Yesterday we spent time celebrating my sweet friend from childhood at her bridal shower! It is always so nice to catch up and spend time with friends.

And today was my last left side expansion – YAY! Though we originally planned on an additional 60 cc, my plastic surgeon wanted to do 80 cc to ensure the skin is stretched enough that we can hopefully perform the less invasive surgery at the end of this year. This gives me a total of 670 cc in my left.

I’m more uncomfortable than the last expansion but it isn’t as painful as the last time that I did 90 cc. I can feel the muscles spasms and the increased pressure in my chest but thankfully that will get better each day until it is barely noticeable again. I’m glad we did the extra in the hopes that I don’t need the more extensive reconstruction surgery. I don’t have to see the plastic surgeon again for about 7 weeks – wahoo! It’ll be a nice break from the every-few-days appointments. Of course, they’ll be replaced with the every-single-day appointments of radiation soon but hopefully that’ll go quickly.

And last but certainly not least – I can lift again!!! I picked Jacob up the moment that he walked through the door. We spent the evening playing outside and reading books while I picked him up & snuggled him constantly in between. I’m extra sore from it but it was totally worth every single moment that I was able to hold him.

Happy Monday, everyone. I hope your weekend – and your day – was filled with happiness.