My Cancer Story: The Recovery and Reconstruction

If you haven’t yet read the previous posts about my cancer journey, you can start from the beginning right here.

Now that I am completely recovered and finished with the reconstruction process, I am finally back to give an update on how the last 6 months have been.  So many readers have been asking how I am doing, and I appreciate your thoughts and concerns so much!  Thank you for all of the sweet comments, emails and prayers.

When I finished my last update I had just arrived home after spending 2 nights in the hospital after my double mastectomy.  The first week home was actually not too bad, mostly because I spent the majority of it sleeping.  The pain was under control and all of the medications made me very, very sleepy.  My wonderful husband made a medication chart that listed every pill I needed to take throughout the day and night, and he would set his alarm many times every night in order to get up and bring me whichever pill I needed to take.  This is what it looked like:

I was taking one pill or another every few hours, so he probably felt like he had a newborn again.  He also emptied and measured my surgical drains several times a day.  I was so grateful to have him by my side.  If you haven’t read the full story, he was actually living in a different state at this time (he started a new job across the country 2 weeks after my diagnosis, but I opted to stay put and get through my cancer battle before joining him) but was able to spend 2 weeks with me to help me recover.  I don’t know what I would have done without him.

The biggest hurdle the first week was making sure that I got up and walked enough to prevent blood clots, and also breathing regularly (and deeply) into this contraption to help open up my lungs.  A side effect of this surgery is that your lungs partially collapse, so getting them up and running again before it turns into pneumonia is very important.  I also took my first shower, which was a challenge.  Showering with 2 drains coming out of either side of your body is not easy!  Once again my husband came to my rescue and helped me get through it.

After about a week, the difficult part began.  I had to start getting up and about and trying to function again.  My husband went back across the country 11 days after my surgery, but I was still not able to take care of my daughters at this point so they started making the rounds between the grandparents.  We were so blessed to have 3 sets of grandparents nearby who were anxious to help in any way they could.  Since we homeschool, this included doing school with the girls each day.  Two of the grandmas are former school teachers, so this worked out just fine.  Unfortunately, this meant that I was by myself quite a bit throughout the next 2 weeks which was lonely.  I felt pretty lousy most of the time, but lonely as I was, it was for the best.  During this time we also had friends from church bringing meals to our house every 2-3 days which was wonderful because I was not able to leave the house, let alone go grocery shopping yet.

Weeks 2 and 3 after the surgery were the hardest.  While not in much pain, I just felt really bad most of the time.  It is hard to describe exactly why I felt so bad, but I will try.  I was taking 5 different medications that I think were making me feel lousy and messing with my stomach.  I had no appetite and could barely stand the thought of food, but I could tell that I was hungry and that not eating was making me feel worse.  So, I was trying to force myself to eat which was difficult, and even then I wasn’t sure if it was helping or making it worse.  My body was just having a hard time recovering from such an invasive surgery and consequently every part of me just felt terrible.

About 2 weeks after the surgery was when the reconstruction process really began.  At the time of the mastectomy, I had tissue expanders put in place.  These were to be filled slowly over a period of several months, until my breasts got to be the size I wanted them.  At that time, I would have another surgery to remove the expanders and replace them with silicone implants.  Right at 2 weeks post surgery, I had them filled for the first time and it was awful.  The actual filling procedure wasn’t too bad – just a needle through the skin with saline pumped through it.  It only took a minute or so for each side, and compared to all of the biopsies I had been through, it really wasn’t that bad.  The awful part was how I felt for the next 48 hours.  My plastic surgeon put 100 ml in each side, which is typical.  However, I quickly found out that I was not the typical patient.  I was in so much pain and discomfort for the next 48 hours that it was unbearable.  Imagine feeling like someone is grinding their fist into your chest muscle as hard as they can, with no relief.  It even felt like it was hard to breathe.  I was almost ready to quit the whole process and just live without breasts.  But, with a lot of valium and narcotics, I managed to get through it.  Needless to say, we never put in 100 ml at a time again.  We stuck to 50 ml for the rest of the fills.

 It was about 3 weeks post surgery that I started to feel somewhat normal again.  I started weening off the medications and leaving the house for short periods at a time.  I was able to drive again and take care of the girls full time, although it was exhausting.

One of the hardest parts of the recovery was dealing with the surgical drains.  For the first week after surgery I had 2 on each side.  One on each side were removed at my 1 week follow up appointment, but I had the other 2 for a VERY long time.  Most people get them removed after 3 weeks, but I ended up having them for six.  They would just not stop draining.  In fact, they were still draining at the six week mark but my surgeon said they needed to come out anyway.  I will try not to gross you out too much, but the drains had to be emptied and their contents measured and recorded twice a day.  It is not a pleasant task.  On top of that, trying to sleep, shower, and just function with them is very difficult and uncomfortable.  They were just coming out of a hole in my side and held in place by a few stitches, and anytime they would get tugged on (which was constantly!) it was painful.  Not to mention, trying to disguise them with my clothes was difficult.  My wardrobe was limited to baggy shirts and cardigans.  I actually ended up going on a cruise with them 5 weeks post surgery (you can read the trip report here) and they were such a pain.  I couldn’t swim, but luckily already owned a bathing suit top that actually disguised them so that was nice.  We got off the ship on the last morning and literally drove straight to the doctor to have them removed.  That is the only time I have ever been happy to leave the ship!  I wanted those drains out SO badly!!!

I would say that about 4 weeks post surgery I was feeling good again, and by about 6 weeks I was feeling great but still constantly fatigued.  I was still having the tissue expanders filled weekly and although not a painful as the first time, it was still uncomfortable for about 24 hours after each fill.  Once again, valium was extremely helpful.  As they started getting larger, they got more and more uncomfortable because unlike implants, they are rock hard.  I described it as feeling like I had concrete in my chest.  My surgeon warned me that they would eventually feel like coconuts which is NOT what I wanted to hear.

The hardest part about 6 weeks post surgery was dealing with the tissue expanders.  Sleeping with them was torture.  It was like trying to sleep with concrete in your chest, if that was possible.  I am a side sleeper, and that was out of the question.  Any type of movement that pushed my shoulders together was painful.  Sleeping on my stomach would have been impossible as well.  The only option was to try to sleep on my back, and I have never been able to do that comfortably without it causing lower back pain.  The best thing I could do was use about 8 pillows to elevate my head, place under and between my legs, and wedge under one side of my back so that I was raised at about a 30 degree angle.  This was the only position that worked, and even it didn’t work very well.  All night long I would just rotate from elevating one side to the other.  The tissue expanders had sutures all the way around them to keep them from rotating inside of me, and even the 30 degree angle was enough so that gravity pulled them down towards the bed, which cause a lot of pain from the sutures being tugged on.  Prescription pain meds and ibuprofen helped a little, but I basically just grew accustomed to being sleep deprived all of the time.

These sleep issues and chest discomfort continued for the 3.5 months that I had the tissue expanders.  Finally, they got to be the size I wanted (and did indeed feel like coconuts!) and we scheduled the next surgery for January 15.  On that day, I had a day surgery where my surgeon removed the tissue expanders (yeah!!!) and put in implants of the same size.  The surgery was uneventful and the recovery was very quick.  I was pretty much back to normal the next day, and I could finally sleep comfortably again.  That was a HUGE milestone for me.  Other than lifting restrictions, I was back to normal quickly.

Overall I am very happy with the results.  Apparently a lot of women don’t have great results with breast reconstruction – mostly issues with symmetry.  Thankfully this didn’t happen to me and based on my surgeon’s feedback, I had excellent results.  It was a very difficult road to travel but I made it through.  I feel great today, and I am lucky that I do not have to go through either radiation treatment or chemotherapy.  My lymph nodes were checked at the time of my mastectomy and showed no signs of cancer.  I will begin my routine screenings with my oncologist next week and we will discuss specific screening and prevention techniques going forward.

If you made it all the way through my cancer posts, thank you for following along.  I hope that sharing my experience can help someone – either someone in a similar situation or even someone supporting someone who is going through something similar.

***Update: For an update that I wrote 18 months after this post, click here.