Recovery, Physical Therapy, NED, Decisions and Next Steps

It’s been over a month since my last post. If you are a regular reader of my blog, you know I’m usually compelled to provide a ridiculous amount of detail to make up for what could have been five or six different posts. My goal tonight is to simplify and keep it as brief as possible. We’ll see if I succeed. Yeah, I have my doubts too. OK, let’s be honest…not going to happen.

Recovery

So, I survived my double mastectomy surgery. The anxiety and fear leading up to the surgery was so much worse than the actual surgery. I woke up in no pain (albeit very nauseous all day) and remained pain free for the days following the surgery. After one night in the hospital I was released to go home. Brent, Mom, Becca and Dad were all at my house, ready to wait on me hand-and-foot. But I was fine. I had no pain. I wasn’t bedridden, didn’t need any pain meds, barely even took Advil. It was very strange for all of us and unexpected. The Monday following surgery, I felt weird being on medical leave from work. I even texted my boss that I felt like I was playing hooky. There honestly was no reason why I couldn’t have worked from home. But I didn’t. But I was bored.

By mid-week I was feeling very uncomfortable. The dreaded drains that everyone told me would be the worst part of the process turned out to be the worst part of the process. The drains didn’t really get in my way, the tubing just hurt on the inside. I was (and still am) tired of only being able to sleep on my back. I wanted them OUT of my body.

As excited as I was to get them out of my body, I was equally anxious about the drain removal process as it is just done in the surgeon’s office without any anything. Fortunately, it was a total non-issue. It did feel better when they were out, but I quickly learned that the tightness and soreness I was feeling was not only related to the drains. It was my new normal, for the time being at least. I took more Advil during the second week than I did the first, and experienced much more discomfort and pain than I had the first week. It’s gotten better over the weeks (it’s 5 weeks tomorrow), but I definitely still struggle with some discomfort, stiffness and difficulty reaching. Still, overall, it has been so much easier, physically and emotionally, than I thought it would be.

Physical Therapy

Now that the drains were out, the next step was to meet my physical therapist to improve my now very limited range of motion. I was very nervous because you often hear of the physical “terrorists” who take your existing pain and exponentially make it worse. Yes, there was some pain involved in that first session, but it was sweet pain mostly, and I felt instant results and relief. Anyone reading this who is on this journey or knows someone going through this journey, the most important piece of advice I can give you of anything throughout my journey so far is to demand to see a physical therapist who specializes in lymphedema and breast surgery patients. I feel so fortunate to have the specialist I have – she is amazing at her job, very knowledgeable, thorough and passionate. She has just the right mix of compassion and toughness to push me to the next level at every session. After 7 sessions with her (and many homework sessions that are still ongoing), I have officially been released. Most excited about the release are Millie and Murphy (my dogs), as she hesitantly gave me permission to begin leash walking them again.

But, I haven’t seen the last of her yet. My future holds two more reasons for needing to see her, which leads me to…

NED

Who is NED, you ask? He is no one, it’s an acronym for the three words any post surgical cancer patient wants to hear: No Evidence of Disease (ok, four words). When I woke up from surgery, still seeing double and drunk on anesthesia, my surgeon informed me that he saw nothing at all that concerned him, and, although we would have to wait for the final pathology report, he felt really confident that I am now cancer free. And the final path report did confirm just that. So, I am officially a SURVIVOR!

Decisions

When I first learned I was cancer free and that I had a clean pathology report, both my surgeon and my oncologist said I would no longer need radiation. My oncologist, knowing my nature, wanted me to hear it directly from the radiation oncologist though, to give me peace of mind. (Her exact words were: Since I know you would put matches underneath your fingernails if we told you it would make a difference, I want you to talk to him). So, I scheduled another appointment with the radiation onc expecting him to say the same thing. He didn’t. He said that due to my young age (even though I recently turned 40 – yikes!), triple negative status and the initial lymph node involvement (even though it was microscopic), he recommends radiation and can guarantee a benefit to me. While the benefit is not as drastic as it would be for someone with residual cancer, it will make an impact on preventing a local recurrence (radiation has no impact on recurrence anywhere other than locally as it only treats the local area).

I was very torn and confused. I trust and respect my surgeon and oncologist tremendously. They very recently saved my life. I wanted to listen to them. I wanted to be done with treatment and only be facing a now even simpler reconstruction process. But I could not get that nagging out of my head. I want no regrets, no what ifs. So, I asked the radiation onc to confer with my other two doctors and sell his point to them to see what they said. In the end, after much ado and anguish, I finally heard from all my doctors and they are all on board with me doing radiation, if for nothing else than my peace of mind. I’m convinced there is a benefit and even if it only buys me one percentage point, I will take it. So, radiation is back on.

Next Steps

Today I went to the radiation oncologist for step one…a “fitting” which consisted of a CT scan and lots of sharpie “x”s drawn on my chest and sides. They use the images to map the angles for the radiation beams. This type of radiation is very targeted and will only be on my right side in the area where the cancer was and small portion of my chest wall. I will have 28 radiation treatments. They will be daily except for weekends. When I finish those 28, he said they may do 3 additional treatments on the scar line. So I’m looking at about 6 weeks.

Many people have asked me about side effects for radiation. The vast majority of other cancer survivors I’ve spoken with who have been through it describe it as a walk in the park after chemo and surgeries. I’m cautiously optimistic that it will mostly be a non-event. A sunburn feeling and fatigue are the two most common side effects. My plan is to schedule my appointments early each morning and go straight to work from there without any issue. Each treatment takes only about 15 minutes start to finish. Hopefully my plan will be my reality.

I’ll know early next week when my start date will be, but it will probably be one day next week. Upon completion of radiation, I will need 3 months of recovery time (and full range of motion again which will require more physical therapy) before I will be ready for reconstruction. Reconstruction will be the more involved latissimus dorsi flap procedure due to the radiation (I may have escaped that if I had escaped radiation, although that was never confirmed).

My hair is growing back slowly but surely. So far it appears it will still be mostly curly/frizzy, same as it was before chemo. But it is looking salt and pepper colored. We’ll see what happens as it gets longer. In the past week, my eyelashes and eyebrows have returned as well. Just like that. One day there was nothing, the next day there were lashes and brows. They all have a ways to go but at least finally it is moving in the right direction.

So, that’s where I’m at. Five or six blog posts in one, and now everyone is caught up. I’m ready for radiation to begin and get the rest of this show on the road!

 

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7 responses

  1. Shelley so well written and a tremendous help to anyone going through this. Not what any of us wished but agree with your decision. 6 weeks to better beat the odds is a walk in the park. Sending you all the support and love immeasurable!

  2. You continue to amaze me! I think you did the right thing re; the radiation Love from my goldens to you and your goldens!

  3. Hi Shelley!
    I’m so glad I found your blog. I found my huge lymph nodes in October 2013, dxed with TNBC December, started eight rounds of dose-dense chemo December 30, partial mastectomy May 22, now just starting radiation. I will be a constant reader. And I too shove four or five postings into one long one!

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