Getting organized!

I posted a few weeks ago about needing ideas for how to help organize the ridiculous amount of treatment related…stuff.  I received a call a few days later from Aaron, the owner of Bear Residential Construction in Zellwood. He explained that him and his wife read my blog and have been wanting to do something to help – and that helping with storage was right up his alley!  He asked to come by our house the following week to see what space we had and what supplies we were looking to store.  I was shocked and excited about the offer!!

Aaron stopped by last Monday, along with Mike from Team Gina. They were surprised at just how much stuff I actually have related to treatment – with more supplies for the PleurX Catheter on the way. They discussed options and thought that a large cabinet would be best, which we have the space for in our bedroom. It would allow us to consolidate all of my supplies, which are currently spread amongst the two bathrooms, a closet, my master bathroom sink and the top of the refrigerator, into one central location. I was giddy with excitement when they showed me what they had in mind and headed out to order supplies.

Aaron called me Friday to let me know that everything was on track and that they should be stopping over to install it today – which they did! Aaron and Mike ventured back over to our side of the town, bringing Tom from Team Gina with them, and with the trailer in tow. 

They spent a few hours installing the cabinet in our bedroom. They secured it to the wall, removed the baseboards so that it sits flush and even brought along childproof locks to keep Jacob out. The cabinet itself is amazing. They painted it to match the other cabinets in our bathroom, included adjustable shelves and it has TONS of storage space! It’s…incredible. It’s more than I ever envisioned and works perfectly to centralize all of my supplies – and in a place where I use them most!

In addition to the cabinet that they graciously supplied us with, they asked if we would like to join them for the weekend at the Team Gina Golf Tournament in April. Ummm…YES!!

AND!! We get to ride in the hot air balloon to help with the ball drop for the tournament. How cool is that?!

On top of the cabinet, the golf tournament and lots of laughs with the guys…they also gifted us a very generous donation towards my medical & prescription costs for this year.

To say that I am too blessed to complain would be an understatement. These men have made – and continue to make – a profound impact on my life and the life of my family. They are kind, caring, generous, loyal and funny. I am so blessed to have them in my life. 💚

More supplies…

Bright and early today, my sweet husband and I ventured to the radiation oncologist for my 4 week checkup. I still have an open wound on my chest (ugh!) but it’s slowly going away and for that, I am grateful. My awesome doctor spent a while with us, having us fill her in on the past 4 weeks. When I learned that I had fluid in my lungs, she was the first (ok second, Joe wins😉) call that I made to talk through everything happening. I value her opinion so much and am glad to have met her along this journey. Am I allowed to be her friend?! 😊😉

Next we ventured next door for more post-surgery supplies. My left arm has started swelling pretty significantly (in my opinion) so I needed to get more sleeves that fit now. My left arm is larger and a bit harder than my right, which is crazy but we are chalking it up to the swelling. I was fitted for a new sleeve and grabbed a few, plus gloves, learning again when I needed to wear them.

I also decided that it was a good time to get more post-mastectony supplies. Since I had fluid removed for radiation in September and we go on vacation in January, I figured now was a good time. I was fitted again and received 2 new breast forms. One form I can use for swimming and everyday wear but it is quite heavy. The other is a bit lighter and can only be used for everyday use. It comes with padding that can be used to fill in the gaps and make me more…even.

Since I have new forms (and lost a few pounds), it was also time for new bras. I was fitted in the newest styles for those. I was also fitted for a bathing suit top (bottoms not included!) in anticipation of next month.
Then…the bill. Oh, my. So I received 2 breast forms, 5 bras, 4 sleeves ad 2 gloves that were included with insurance. If you’ve met your out-of-pocket deductible, which I have for 2016, then these are all billed to insurance by law. The grand total? $5628…and some odd change.

Yup, that’s right. I “bought” supplies that try to make me feel slightly like a woman again, that are needed because of this cancer, and it cost the amount of a used car. Oh and the bathing suit top? That’s not included in the insurance coverage so although it requires a breast form, it’s paid for by me. And the bottoms can be found elsewhere. 

I am very happy with this particular store and very much like the woman who takes care of me. It’s just unfortunate that necessities such as this, which are covered by law now, come at such a ridiculous cost…just to help make me feel somewhat normal. 

I know insurance won’t pay nearly the amount. However, that is the retail cost and, based on my understanding, what they would have billed me independently if I didn’t have insurance coverage.  While I am grateful for these supplies and the coverage that I have, it is discouraging that they cost such an obscene amount…oh, and that a prescription is needed to allow me to obtain them.

Anyway, that’s my rant for today. All-in-all, today was a good day and I am grateful for the progress being made on my open wound and the supplies I obtained. Have a wonderful night, folks. Be grateful for the small joys in life!

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.