After 3 days in the hospital I was finally released to come home. I could barely move my arms, and was in a lot of pain. I was taking a number of different pain killers [Tramadol, Robaxin, Atavian, Percocet]. Some were for muscle spasms, some for general pain. Every 3-4 hours I needed something to help with the pain.
I had two Jackson-Pratt drains on each side. These removed excess fluid build up in the areas where they removed the breast tissue. I was lucky, and after 1 week, they removed a drain from each side. And after 2 weeks removed the final two drains. [I have heard some people that had the drains up to 5 weeks, and they were annoying, and I was having discomfort where they came out of my skin, so I was glad to have them out].
Once the drains came out, and the external stitches were removed, the Plastic Surgeon starting the "filling" process. I would go in twice a week and he would insert a needle into the Expanders that were put in during the mastectomy surgery and fill each breast with 60cc of saline. This caused my pectoral muscles to stretch as the expanders were placed in between my pec muscle.
What I didn't know was how rapid this really was. After doing some research most patients are filled once per week up anywhere from 30cc to 80cc. I was getting 120cc each week in each side. The goal was to reach 480cc in each side. This would allow me to end up with something close to a 34B or 34C bra size, smaller than I was but still a decent size for my body frame.
The reason I was doing rapid expansion, was because I still needed to have radiation surgery on my left side. Because I was diagnosed was Stage IIIa cancer, it was determined to be in my best interest in order to prevent reoccurrence to have radiation. Not realizing that they could not do radiation during the expansion process since there is metal in the expanders, I have to have the expanders filled, then removed, the implants put in, and heal from that surgery before we could start radiation. The other reason I was given is that they want to start radiation no later than 12 weeks after the mastectomy surgery.
So in order to meet the 12 week timeframe and give me enough time to recover from the implant surgery, we proceeded with the rapid fill.
Each time I would go in for a fill I would spend the next 24-48 hours in severe pain, unable to sleep. [I should mention that I have been sleeping in my recliner since my mastectomy surgery on August 28th, at this point, as I cannot lay flat on my back and I am terrified when I cannot get out of bed on my own]. After 48 hours, my muscle seemed to have stretched enough that I can get a little comfort. Then it is time for the next fill. I went through about 3 weeks of this, and then I had one fill where I was literally putting my feet through the floorboards of the car and writhing in pain on the way home. It turns out the expander was now pushing on nerves in my arms and sides and I was just miserable.
We took a week off from filling, and then I came back. Taking the week off helped me feel a little better and start to get a little sleep, but emotionally I was a wreck and I was terrified to go back for more. Luckily I had one more fill which got me to 480ccs. The plastic surgeon wanted to go a little more, but I finally put my foot down and said I was done. I couldn't handle the pain and the emotional stress this was causing me.
During this time I had to be off of work as I was taking so many pain killers. I was still not able to use my left arm, and I had very little range of motion in my right arm. I didn't seem to be healing, and I was starting to get back spasms. I also realized that I was walking like my 80 year old grandmother, hunched over with my shoulders rolled forward, and I was cradling my left arm.
I decided to go see a therapist, and was referred to an Occupational Therapist who specializes in lymphadema since my left arm was starting to swell slightly [why no one sent me to a lymphodema specialist prior to surgery to measure my arm and track changes I will never know, but if you are having lymph nodes removed speak up and get measured for a sleeve it could save you a lot of pain]. I still was not able to dress myself, and needed help showering and washing my hair.
I went into the Occupational Therapist [OT] a broken woman. I was in tears as this was my last hope to get some help it felt like to me. This was a big turning point for me. I will share those experiences in a separate post, as this has gotten long.
Just a few words of advice and encouragement for others:
- It will get better, it truly takes time to heal, but the pain goes away
- If you are in pain, speak up. Don't assume like I did it is because you are a wuss. You really should not be in that much pain. I spoke up too late and did a LOT of damage to my muscles and tendons.
Next steps:
- Occupational Therapy and then Radiation
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