My Wednesday Updates

And we’re back! Whew, it’s been a crazy season of travel and despite the amazing times that we have had, I am relieved to be home. Just one more local center visit  (well, 2 hours local) and then we are done  – hopefully for a while!

So after talking with my oncologist, I attempted to take an extra week off from Xeloda to help heal a little better from radiation but also allow my blood counts and other side effects to calm down a bit. My skin started to heal a little faster from radiation, which is super exciting. My feet started peeling like crazy during my time off but thankfully aren’t painful just yet.

Unfortunately, during my bath last Tuesday night I noticed what appears to be breast cancer coming back on my skin. It is on my left and center belly, under the radiated area. I chatted with the doctor Wednesday morning and after a few pictures and discussion of healing for 2 extra days versus starting Xeloda a little sooner than discussed, we decided to start Xeloda on Wednesday. We did not do a biopsy but we are pretty confident that it is cancer. Hopefully it was just a few days too long that the Xeloda took a break and it is actually still working. We are praying hard for that!! We know the CT scan before showed awesome progress! The radiation oncologist (RO) said today that it likely would not be gone by now. The Xeloda attacks the tumor directly, which absorbs the Xeloda, turns it bright red, inflamed and quite angry. That is pretty much what’s happening now so I am optimistic! 

My radiation burns are still there. Some parts are quite itchy where there isn’t raw skin. I do have lots of raw skin still but it’s healing…slowly but surely. I’m just sick of bandages and 3 times a day changes. But it’s a small price to pay!

And on that note, because I like to keep things interesting, I have been having some pretty intense pain in an area that was double radiated on my left side. It’s on the end / center of my chest, by the my expander. It’s not rib pain but expander or scar pain. I’ve had it for 2 or 3 weeks now and it’s more painful than the radiation burns, if you can believe that. My RO thought it was odd for sure and last Thursday, my scar opened up. It’s been opening a little more over the last week and she wanted me to see my plastic surgeon (PS) to check it out immediately, since she had never seen it happen before. Especially given my age and how well I am healing, it’s surprising that it would open suddenly. We are thinking it may have opened as a result of starting the Xeloda again (rad-intensifier). So I also headed to the PS today and after checking it out, he was relieved that it appears to be a superficial skin opening. Everything is healing really well around it, the new skin growth is there and thankfully the expander is not coming through! The skin underneath looks great and intact. I know what to look for and the pain will hopefully get better with time. 

We also discussed my next surgery. It was originally slated for 5 – 6 months after stopping radiation and depending on my healing. After chatting about this in more detail, it’s decided that my reconstruction attempt should be as soon as possible. I cannot have MRIs currently because of the tissue expanders and that in itself is concerning. They show a lot more than CT scans, especially in my brain, so it is incredibly important to have those sooner rather than later. Typically, the PS waits to help eliminate scar tissue and allow more time for healing. In my case, the MRI outweighs the risks of waiting. 

So then comes the question of expansion. We reduced my left for radiation down to 300 (my right is still at 620). I cannot express my relief that he didn’t want to remove fluid to assist my scar today! There is a lot of concern around whether or not I will even be able to expand on the left side. Basically, my skin healed too well around the expander. It tightened up nicely and allowed the scar tissue to form around the expander. The risk is that when we go to expand, I may – quite literally – expand inward. We will start much lower than before and see how it goes. There is the potential risk that instead of expanding outward, I expand inward towards my ribs. We don’t want that. If that happens, we obviously stop and stay as is. We will cross that bridge when it comes. Frankly, I am fine with anything there at this point. I’d just like my chest bigger than my belly! 😉

We are optimistic that I will heal without difficulty but there is the possibility of a second surgery to remove my implants if I do not heal properly. Again, we will cross that bridge when it comes and hope for the best. I’ll be glad to be rid of these annoying and tight tissue expanders!

In terms of timing, my skin will hopefully be healed completely from radiation within a month. We will then attempt expansion and almost immediately after expansion attempts then we will have surgery. Much sooner than expected! 

So those are my updates for today. As a random side note, I am so blessed with my doctors. At every single visit, they sit down and chat with me. They pull up a chair or offer a hug and they want to know about…life. Not just cancer but the wedding we were just in or how Jacob is doing in school. They genuinely care about us – and I am just so grateful for that!

Happy Wednesday, friends! Continue to spread that love around! 💚

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I graduated!

I’ve attended a few graduations in my years. My big sister’s helped prepare me for what to expect a year later at my high school graduation. When I graduated with my two year degree, I was excited and surprised to receive an award for excellence. For my four year degree, I had initially decided not to walk the stage but later decided to walk – with my family cheering me on from the crowd.

Today’s graduation was a bit different. It wasn’t a two or four year event in the making but it had been a long process for the past four months. Initially focusing on one area and then moving to the next, the progress could be seen but the emotional and physical stresses could not. A few weeks ago I decided to slow down my expansion process by adding on one more so that the pain and discomfort would ease over the weekend following each expansion. This has greatly improved my comfort level and I still finished when I wanted.

So today, I received my last saline expansion for a total of 620 cc on the right and 670 on the left. Though the expanders are positioned oddly (to me), I feel a new sense of comfort and relief…a new normal. I have graduated from the weekly visits to the plastic surgeon and although I will miss the laughter and jokes, I am glad I won’t be returning for 3 months.  There isn’t a stage to walk across in celebration of today but there is a massive smile on my face that basically sums up my thoughts. Hooray!

Another phase complete on this journey.

A cancer perk

Lots of bra talk today, friends!

You may know that traveled a bit of a distance to be fitted for post-mastectomy supplies a couple of months ago.  The experience wasn’t awesome and I left disappointed and shelling out money that I didn’t expect to pay but I was happy that I at least had something. Fast forward to this week, when I was fitted for my lymphedema sleeve and learned that I wasn’t fitted correctly for my bras and that this place can refit me.

So before my radiation appointment yesterday, I ventured back to be refitted for post-mastectomy supplies. My goodness, what I completely different experience I had. The woman who helped me yesterday was incredibly knowledgeable, didn’t rush me and took the time to ensure that I was fitted correctly. She also didn’t make me feel bad about the fact that these are covered – by law – by insurance (and that there shouldn’t be any upcharges, unlike the last place). You see, part of the experience that I had the first time around, the woman who assisted me complained about the amount of paperwork and the hassle that it was to handle post-mastectomy supplies. Even though I had called a week ahead of time, she seemed bothered that I came in for assistance…which is literally the reason that the store exists. I am not one to complain but it was hard leaving that store. I felt like I would never feel comfortable in a bra again and that everyone would be able to tell that I’ve had surgery. And frankly, I felt a little ashamed that I needed to go there for supplies because of the way the woman spoke to me and handled the fitting. Sigh…but anyway…

I also learned that the insert that I have been using is typically used for ladies who have reconstruction after a single mastectomy. It’s an insert that is used to make the breasts look more symmetrical after a surgery like that, versus a double mastectomy with one over-filled tissue expander. So I was ordered the correct insert that will make the fact that I have had a double mastectomy unnoticeable (right now, even with the insert I am uneven…there isn’t enough volume to the insert).

After being fitted for 5 – yes, 5! Including a sports bra!!! – I asked about my expansion happening in the coming weeks and the subsequent reconstruction later this year; I wasn’t sure what that meant in terms of bras. Do I go back to wearing regular bras? Nope! I will continue to see this sweet woman as regularly as I want (for the rest of the year it’ll be every 2 months) and she will refit me and send me home with bras that fit my new post-surgery body. How cool is that?! And the most exciting part for me (well, aside from the insurance coverage, which is so awesome), is the fact that these bras are ones that I would have picked out at a department store or specialty shop. They are cute, won’t be seen under a tank top, not bulky and come in cute colors. This may not seem like something to get excited about but for me, it brought tears. I don’t need to hide behind a too-small insert and bras that stick out under any of my clothes because they are too big.

I feel a little more like me. A little more like a woman again.

My reason for fighting

She awoke suddenly, the pain in her chest causing her to tighten her upper body to help alleviate the sharp pain. A few seconds tick by slowly and the feeling begins to subside. She waits another moment before loosening the grip her muscles have on her chest. Laying there for a moment as if frozen in time, she debates whether or not she should attempt to move her body in an effort to alleviate the pressure she feels across her ribs. Glancing at her water cup through the corner of her right eye, she decides on a short walk to stretch her body slightly and grab some water, hoping the extra hydration may aid in calming her muscles.

Ever so slowly, she moves her legs first, one at a time. As she shifts her body in preparation to sit up, the muscles across her left side tighten again and she stops moving to allow the pain to dissipate. She awaits a few seconds and slowly pushes up with her right arm, while keeping her left side as still as possible. Sliding off the side of the bed, her feet touch the floor and remain there for another moment to allow her body to adjust to sitting up. She reaches for the cup with her right hand, careful not to move her left arm, but the act of reaching causes her chest muscle to spasm again. This time she fights through the pain and grabs her cup and stands in one fluid motion, hoping to prevent another spasm as her muscles calm again.

She shuffles slowly to the kitchen, trying to keep her back as straight as possible as she walks. Reaching the kitchen without incident, she fills her cup and begins the walk back to her bedroom. The house is completely dark with night and she is careful not to bump into the toys that scatter the floor.

Entering her bedroom, she shifts to the left and stops suddenly as another spasm pulses through. The pain shoots quickly across the left side of her chest and down her arm. She clenches her teeth and waits for the muscles to calm again, trying to control her breathing. When she begins walking again, she uses the light from the window to guide her towards the bed. Setting the water down, she moves her body so it is facing away from the bed and sits on the edge. Taking a deep breath, she slowly shifts backwards while using her right hand to guide her towards her pillow. As she turns slightly, another shot of pain courses through her chest. She once again pauses and waits for the muscles to calm before moving. Her pillows are leaning against the wall, allowing her to scoot backwards a little more before leaning against the pillow. Her muscles begin to relax, allowing the pillows to support her.

She leans her head back and is grateful to only feel the pressure in her chest now and not the pain of her muscles stretching. Reaching slowly with her right arm, she grabs the cup and drinks down half of the water she poured. Setting it back down, she breathes in; careful not to pull too much air into her lungs so she doesn’t cause another spasm.

I don’t know how much more I can take. She thinks to herself, fighting back the tears that sting her eyes. She is wide awake now and knows that sleep will not come easily. What if this pain doesn’t stop? She questions, wondering if it will ease over the coming days like the pressure in her chest typically does. Stop thinking like that! She yells in her head. You have to do this! You have to push through the pain! She breathes in again and exhales slowly, wiping at her eyes.

Moving her head slightly to the left, she glances at the figures that lay beside her. Her little man is snuggled against her husband, his tiny hands laying against his chest as it rises and falls to the rhythm of a deep sleep. The starlight from the window cascades across the bedroom, allowing her to see their faces as they lay dreaming beside her. She studies them both, imaging what they are dreaming about.

My boys. She smiles to herself. My reason for fighting.

Reaching slowly to her right again, this time she picks up a book and attaches a nighttime reading lamp to the back cover. Clicking it on, she adjusts the light and begins to read. She loses herself in the story, while distracting herself from the pain.

Expansion day…again

I officially dislike expansion day. I’ll continue with my previous analogy, though I’m not sure how there is room to fill any other space in the post-turkey day belly.

After filling up on Thanksgiving dinner and then the sweet decadence of chocolate pecan pie, the stomach is at capacity and can’t take on anything else. But you’re thirsty. So thirsty. And you need to wash down all that goodness with something, right? Imagine downing a large glass of ice cold milk, letting it fill in every last nook and cranny of your stomach. Now you go to sit down and feel more like you are going to burst than you ever have. Not the best feeling in the world, though you know it was worth the calories and deliciousness.

The expansions are not comfortable. The pressure is intense, pushing hard on my rib cage and outward as well. My range of motion is throw off a bit each time since the expander is quite hard. Today’s fill, which was 90 cc, is the worst yet, since the feeling in my chest is continuously coming back. I can’t feel my skin but I can feel the muscle underneath and around the expander a bit now. And right now those muscles are doing a bit of yelling. They are pulling and stretching, with each of those activities causing a pang or ping of pain. I couldn’t feel this type of pain on the previous fills so this is a new experience. Moving is a little more challenging now that I can feel the pull of the muscles as well so today I am learning to be even more careful getting around. The muscle pain ebbs and flows pretty consistently, even when sitting still. It’s similar to contractions in the way it comes and goes, though not as intense as labor pains. I can feel the pull in my back as well, I assume because of the pressure from the expander on my chest wall.

On a plus side, based on the previous expansions, I should feel better by Wednesday night / Thursday morning. My plastic surgeon said everything is healing nicely and we may do a little less saline at the next fill. I wouldn’t mind that too much. Part of me likes moving this along quickly so I have less fills but as the feeling within my muscles comes back, I am liking the idea of less saline at a time.

So, now I rest. Have a wonderful Monday everyone. Enjoy this extra day and do something you love!

Nuts, anyone?

I grew up disliking any form of nuts. I’m not entirely sure why, and at one point in my early years I totally loved them, but one day I woke up around the age of 5 and decided that I didn’t like nuts. So I stopped eating them entirely. No peanut butter, no cinnamon roasted almonds, no sundaes with chopped nuts on top. Yuck.

Despite my distaste for nuts, every year at Thanksgiving I helped my Dad make chocolate pecan pie for dessert. It’s a family recipe and people raved about it. They looked forward to it every year and even after I moved to Florida I kept up the tradition. Whenever people would complement the pie, I would smile and politely say thank you…but the truth is, I had never tried it. It was chockful of nuts and therefore not something that I was interested in eating. This amazed my husband for years.

When I was pregnant with little man, all of this changed. I woke up one day and ate a peanut butter granola bar. I stared at the wrapper as I chomped down on the bar, surprised that the salty sweet combination tasted so good. Then I ate another. On the third one, I decided that maybe I do like nuts after all. That Thanksgiving, I decided to try the infamous chocolate pecan pie for myself. I started by taking a bite off of Joe’s plate. Wow, I finally understood what the hype was all about – that pie was good! By the third bite, Joe decided it was best to hand me his plate and go grab his own.

The other day I compared my first post-surgery expansion to an overfull stomach on Thanksgiving. Now imagine that you finished this incredibly wonderful feast and then saw the decadent chocolate pecan pie sitting on the table. You see people grabbing a piece and savoring each bite. Before you know it, the pie is half gone and you can’t even think about eating a piece. But, then you think to yourself, what if there is none left for me?! The panic sets in and you immediately cut yourself a slice. You can’t help but begin eating it right away, deciding that your stomach will just have to find the room. It does, of course, but you are uncomfortable and you can’t decide if it’s better to sit, stand or lay down to relieve the pressure. None of these options help but dang it, that was some good pie.

I had my second post-surgery expansion today. Another 90 cc of saline was added to my left expander. The pressure from the previous expansion has been relatively normal since Sunday night / Monday morning so the pressure from today wasn’t compounded. Although I’m still mostly numb, some of the feeling is coming back. I couldn’t feel the stick of the needle, however I could feel the needle inside of my chest. I could also feel the pressure from the saline as soon as they started to inject it into the expander. I can now feel some slight pain near my skin, towards the center of my chest, which is new this time around. It is a bit more uncomfortable than before but I am glad that I am beginning to get some feeling back, even if it’s only a little.

I go back again on Monday for another expansion. Right now, my left is filled with a total of 380 cc, with 220 cc left to go for a total of 600 cc in time for radiation. The plus side of filling so much each visit is that I should only have to go once next week instead of the twice that was originally thought – yay!

The expander itself is quite hard, similar to a mango that is about to ripen. It has some give since it is fluid filled but not a whole lot. I often find myself reaching with my left arm and having to move my entire body because it’s uncomfortable due to the expander. I mostly notice it when getting dressed or folding laundry. One of my new normal that I am getting used to.

I’m able to do some stretches to help my range of motion but still no lifting above 10 pounds. I can use 2 – 3 pound hand weights to get the strength back in my arms though. That’ll help me prepare for when I can pick little man up again!

That’s all for now…I think I need to go eat something sweet.

Drain free

Drain free 021916.jpg

One of the best things about Thanksgiving is eating way more than your stomach would typically allow. We often do this despite knowing how uncomfortable we will be afterwards. Actually, some of us may do it with that intent in mind; thus feeling that discomfort like it’s a reward. I’m sure you know the feeling I’m referring to…your stomach so full that you think it might burst, pants unbuttoned or leggings stretched to the max.

This is the closest thing that I can think of to compare the tissue expansion to. I woke up from surgery filled with 150 cc of saline in each tissue expander (the equivalent of a small “A” cup) and today, my left side was expanded with an additional 140 cc. Surprisingly, although it is almost double in size to my right, it doesn’t appear significantly larger. I assume that’s because of the way the expander fills out.

The tissue expander has a metal piece on it, so the doctor uses a magnet to locate the piece of metal. That area is then cleaned and a needle is inserted into it to inject the saline.

The needle that is used to add the saline didn’t hurt since I am mostly numb still but I could feel the pressure from the additional saline in the expander almost immediately. I wanted to take as much as possible today though in the hopes of completing the overall expansion quickly (and hopefully feeling more comfortable sooner). I’ll go back once next week and twice the following week for additional saline. At that point, we’ll reassess where I’m at and whether or not additional expansion is necessary.

This is happening so quickly because I start radiation 4 weeks from today and need to be fully expanded in time for that. Since radiation will shrink the expander and the tissue surrounding it, I need to be over-expanded. It’s not painful, just uncomfortable from the additional pressure and a little awkward when moving my left arm. This is yet another step closer to being done – which makes this process exciting! The plastic surgeon also commented on how nicely my incisions are healing – yay!

OH!! And guess what else?!

I’m officially drain free!!! (Insert happy dance here.)

The last drain, connected to where my lymph nodes were on my left side, is officially gone. I’d like to say it’s a bittersweet departure but frankly, I am ecstatic! No more stripping the tubes, empting the drains, charting the output, sleeping sitting up, wearing an apron around – all done! Plus – I can now take a shower (well, this weekend I can). No more sponge baths for this lady!

And! See that picture of me up top? See that dark shadow around my head? Yup, that’s right – I have hair! And lots of it! I mean, I’m not going to go get it cut into a cute style or add any product just yet but it’s growing faster than I anticipated. The short buzzed style makes it appear as if I’m simply a trendsetter now. 😉 Happy Friday to that!!!

So tell me friends, why are you too blessed to complain today?