Back at Work...

Well, the inevitable happened and I am back at work as of this week.  There were some changes at work while I was gone, but nothing big so it was pretty easy to get back into.  The only problem was that I did not sleep well the first couple of nights.  I'm not quite sure why and whether the stress of being back at work caused it.  My goal at work now though is to not stress too much and take it a little easier.  There's no need for me to be an overachiever.  Unfortunately I do like a lot of what I do and I can sit at my desk for hours focused on work, even though I should be taking frequent breaks and moving my body.  I've also been having a hard time getting up in the mornings early enough to go to the gym, so I only made it once.  I did on another day leave work a little early because I needed some outdoor walk time at the garden.  I miss being able to go like I used to.  I still have a lot of appointments here and there tho so it's also a little tough to have to work those in.  Overall, it wasn't a bad first week.  Despite enjoying what I do though, I do prefer to be doing something else with my life.  I especially miss being more active.  Right now I don't have the energy to be as active as I want to be while working, but maybe in time.  I also miss the slower pace of life where I am not having to rush around to get things done, or to sleep in if I don't sleep well or am not feeling well.  Early retirement is still heavily on my mind.

Physical Therapy Sessions 1 & 2

The first couple sessions of physical therapy was pretty nice.  Unlike other treatments that harm your body, this one only helps heal.  Both of my breasts get a massage and cupping (something like a miniature version of ones they do on backs) for a total of 40 minutes to help break down the scar tissues.  There's also a little massaging of the lymphatic system to help drain fluids.  The first session was quite gentle and the therapist was careful to back off when there was pain.  In the second session it was a different therapist and she worked the scars a little harder.  When I winced in pain she acknowledged it with "I know, I know" like she was soothing a child, but didn't really ease up too much.  It was tolerable though, and I'm really looking forward to getting these scar tissues broken down.  I have one or two appointments a week for the next 4-6 weeks so looking forward to seeing some improvements.

Physical Therapy Consult

Three and a half month out of surgery but the internal scar tissues haven't improved (at least to the extent I can tell) and there is still pain when I lift weights or do anything that stretches the scar tissues.  The surgeon sent a referral to a physical therapist to see if they can help.  The initial consult appointment was today.  

The physical therapist examined my scars and tested my range of motion.  My range of motion is mostly fine.  I've been doing some tai chi and qi gong here and there so that likely helped.  But to address the pain and a bit of swelling on the left, the recommendation was getting massages in the area to help with breaking down scar tissue and lymphatic drainage.  It seems on the left, the scar tissue may be blocking that drainage, and thus preventing the swelling from going down.  I was given snippets of textured foams that I could insert into my bra that would help massage the scar tissue when I move my arms.  I was also able to schedule some appointments to get the area massaged professionally.  They would also teach me how to do it so I can do it on my own as well.  I was looking forward to getting a break from doctors' appointments, but I really want the scar tissue to heal and pain to go away sooner rather than later.  Hopefully these physical therapy appointments will help.

Radiation Follow-up & Debrief

Almost 4 weeks out since my last radiation treatment, the skin is doing much better compared to few weeks ago.  Much of the pain is now gone, and there's just the occasional irritation that feels like a band-aid being peeled off in places, particularly in the back where the skin got exposed to the sun because I wasn't made aware the treatment area would extend so far back.  There's is still discoloration of the entire treatment area, with the worst of it being under the arms.  It could take years for the skin to return to normal, or may never return to how it was before treatment. In any case, the radiation area isn't bothering me as much now and I am having more good days mentally and physically.  I still had a follow-up scheduled though so I went.

Today's appointment was supposed to be a skin check after getting burns from radiation treatment.  My usual nurse was out sick though so I spoke to someone who didn't seem to specialize in breast radiation.  She didn't actually check my skin, and I didn't really feel like waiting around for a doctor since I felt like my skin is getting better.  The main take away from the debrief I also got was that I need to minimize sun exposure to treated area by using sunscreen SPF 50+ for life.  Good thing I am not a beach person, but I am going to have to be careful being outdoors in tank tops and such.  Yeah, it is a little thing, but there are many of these "little" things and also many big things as a result of going through cancer treatment.  

Aside from the sunscreen warning, I was told I can start using deodorant if it doesn't irritate my skin.  I can also swim and take hot baths eight weeks after last treatment if I'm healing ok.  

The usual process for most folks is to do a telehealth call with the provider a month after the last treatment.  The nurse suggested I go ahead and schedule that call even though I was here today, in case additional questions come up. The doctor still owes me some help in removing the radiation tattoos so I'll bring that up on the call next week.

3-Months Surgical Follow-up

It's been just over three months since my bilateral lumpectomies and there is still pain at the surgical sites on both breasts from scar tissue, or fat necrosis as the surgeon called it.  I am still not climbing or running due to surgical pain, and I'm not swimming due to radiation.  The pain is almost daily, though not all day long. It's worse when I do weight training but hurts even when I don't. The surgeon ordered an ultrasound prior to the follow-up and confirmed that there were no fluid build up that could be drained or other issues.  Although I do seem to be taking longer to heal than expected, she did not think the size of the scar tissue was bad.  She will refer me to a physical therapist at the cancer center to see if I can qualify for a vest that will massage my breasts, which will help break down the scar tissues faster.

My next follow-up with the surgeon is in January.  We will do a mammogram first and then discuss results in that appointment.  If my breasts still hurt in three months, I have the option to postpone the mammogram. I'll likely tough it out and just do it though since I could use more peace of mind.  

I had a few other questions for her, and she listened and answered everything patiently without any attempt to rush me like some of my other doctors do at times.  While I'm sad about the continued pain, I'm happy with how the appointment went.  

Second Oncology Consult

I walked in to my oncologists office and there was about 100 people in the waiting room.  The oncologists see patients with all sorts of cancers so they are always busy, but they were particularly backed up today.  It took more than two hours before I actually got to see the doctor.  

He recalled from my previous appointment that I did not want to do radiation or take the medication, so he was pleasantly surprised that I had finished my radiation treatment and I was now willing to take the medication.  He thought he was going to have a "battle" with me.  With no battle being necessary, he said to start Tamoxifen today and I would see him in 2-3 months for blood work and follow-up.  He seemed eager to leave it at that but oh no.  I waited two hours to see him and I had questions. 

I learned from my radiation experience that the doctors do not necessarily prepare you for the worst case scenario.  I wanted to know all about the bad side effects of Tamoxifen.  Hot flashes and vaginal dryness is all he would tell me though, since that's what most women seem to experience.  There are women in the Tamoxifen support groups on Facebook with all sorts of horrible side effects from Tamoxifen, but he didn't go into any of them.  Soon as I stopped talking he says, "I'll see you in two months."  I wasn't done yet though.

Given I didn't do the sentinel node biopsy, I was concerned about potential spread.  I asked about an MRI or PET scan, but since I had early stage breast cancer he did not think they were necessary since they are not good at picking up microscopic cancer cells.  If there was anything in the lymph nodes, the radiation would have taken care of it... supposedly.  I'm glad he was so confident I'm in the clear, but I would rather have had some tests done to confirm it.  He again said, "Ok, I'll see you in two months."  LOL... this doctor really does not want to spend time with me.  

My next question for him was what happens going forward.  I'll see him in January (he's taking December off it seems).  Then again every four months for couple of years, and then every 6 months until the five year mark.  Blood tests at each follow-up to make sure things like my liver and kidney functions are good.  

I had a few other questions before I finally decided to let the doctor go.  The whole discussion with him probably was like 5-10 minutes after a two hour wait.  It used to be that even though we paid a lot for health care in the US, it would at least be good care.  I'm starting to feel like health care in this country is slipping while prices keep rising.  

Resources

When I first started my breast cancer journey, the doctors and the internet were my only resources.  I was assigned a nurse navigator from the cancer center from the start but she never really seemed to answer my questions so I stopped reaching out to her.  I managed somehow these past few months without much else.  A week or two ago though, I got a call from a registered nurse at my insurance company who is my care manager or something to that effect.  She had been available to me from the beginning to help answer any questions I have or find the care I need.  She was actually helpful in pointing out that my oncologist's office offered a triage hotline when I mentioned abdmonial pains to her.  That allowed me to get a abdominal CT a week later, which didn't find anything but gave me some peace of mind. Also around the same time as the call from my insurance, I got a call from someone at the company who managed my workplace benefits.  She offered something similar.  I was surprised both of these services were available to me but I'm only just now finding out - 4 months after my abnormal mammogram results.  I was already done with the two major treatments so the calls came a little late.  I wanted to post about it though in case others in similar situation are looking for resources to guide them in their own journey.  Maybe your insurance or workplace offers similar benefits.  

I did join a few support groups on Facebook related to cancer.  Many women post on these sites asking questions about symptoms or what to expect.  Unfortunately you get a few commenters promoting alternative medicine (or just plain BS) but I think majority of the responses are from actual people who have gone through treatment or about to.  It was interesting to read some of the posts and comments, if nothing else to confirm what you've been reading online.  One thing I learned is that many women who have issues are the ones posting in these online support groups. It's easy to think from all of the problems these women have that you will have them too.  That is not necessarily the case.  For example, many women do have bad side effects from taking Tamoxifen.  But many more do just fine on it and folks have pointed that out in these groups.  I still worry about the side effects of Tamoxifen, especially after having issues from surgery and radiation, but I have decided that I will at least try it to see if I am one of those people who can tolerate it.  

Obviously it's easy to google and find resources on anything online these days.  For convenience though, here are couple to start: National Breast Cancer Foundation, Susan G. Komen.