Implant Post-Op

I am a little over one week post-op.  Thursday, 8/1, I had my follow-up with the nurse, and she removed the bandages (ouch) and gave me another rundown about what I should not be doing.  No pushing, pulling, lifting (over 10lbs), overreaching, swimming, sudden movements, stretching, or exercising.  These restrictions could last up to 12 weeks.  I have a follow-up with the surgeon in 4 weeks and hope some of the restrictions will be lifted.  The incisions are healing well.  The cancer side has dissolvable stitches and also 9 stitched on the outside to give some extra protection against the incision opening.  Since this side was blasted with 28 rounds of radiation, there is a potential for the incision to open up and not heal properly.  Overdoing it and overuse of the muscle on that side could also make the implant raise and open up the incision.

The implants look ok.  The cancer side is a little smaller and is definitely holding the implant closer to my chest than the other side.  I probably should have asked to have the expanders stretched bigger on that side so the tightening caused by the radiation would have made them a little more symmetrical.  At this point, it is what it is, and having the expanders removed is a vast improvement.  During the appointment, I forgot to ask what size (cc's) they put in, but when Steve talked to the surgeon after the procedure she mentioned 300 cc's.  That’s about a B after a mastectomy with no other tissue in the breast.  There are some noticeable ripples under the skin, which may go away as swelling goes down.  They could possibly do a fat graft and do a little lipo to inject into the location.  I have to wear a sports bra 24/7 (except for showering) for at least 6 weeks and have to do implant massages 10 times a day.  I am only allowed to do this on the non-cancer side for now.  The cancer side has to be babied for a while to make sure the muscles and incision heals properly.  The risk of capsular contracture is high for the cancer side.  This occurs if the scar or capsule around the implant begins to tighten.  Capsular contracture can be treated in several ways and sometimes requires either removal or scouring of the scar tissue, or perhaps removal or replacement of the implant.  Radiation therapy dramatically increases the risk of tightness around the implant due to radiation fibrosis.  This could mean many additional procedures, but hopefully I will be an exception.

The surgery went smoothly and lasted over 2 hrs.  There was some damage to the muscle from the radiation, so they had to do some extra work on that side.  I was in recovery for awhile, because they had a hard time managing my pain.  The meds they give in recovery work quickly, but wear off just as fast.  I was home by late evening and after eating a little, I was headed to bed.  The first few days the pain was bad, but it has gotten a lot better.  Now, it just feels very tight and sore mainly on the cancer side.  There are still times when it hurts, probably from moving around too much.  Charlotte fell off the couch the other day and my natural instincts had me moving to catch her.  I didn’t make it in time, which was good because just the sudden movement of reaching out hurt pretty bad.  I can’t imagine how painful it would have been if I had actually caught her.  

I will say having an active toddler around has been difficult for recovery.  She is so fun and makes me laugh, but wants to be picked up or held, and she gets a little frustrated with me.  Even though we were always good about taking turns with different things, she has wanted her mommy a little more than usual.  It is hard to send her to daycare while I stay home, but it’s the only way for me to really rest.  It’s a good thing she loves daycare and happily leaves each morning, marching her little butt out the door.

Overall, I am doing well, aside from the limiting restrictions and am feeling better each day.

The Next Steps

Upcoming Surgery:

We are gearing up for Thursday, July 25^th, the date of my exchange procedure and what will hopefully be my final breast surgery.   I am definitely ready for this next step, but not overly excited to recover from yet another surgery.  My surgery will last from 2-3 hours, but I should be home in the early evening hours.  I didn’t have many options for reconstruction.  The implants will sit inside the pectoral muscle that has been stretched by the expanders.  Because I don’t have tissue options to help smooth out the lines, they will probably look pretty defined.  I decided to go with silicone implants as opposed to saline.  Although saline is very safe and are not harmful if they leak, they feel harder and tend to show ripples under the skin in thin women (with the absence of other tissue).  Silicone implants can be harmful if they leak, but cosmetically feel more natural and shouldn’t show ripples under the skin.  After a discussion with my surgeon, I decided silicone is my best option.  I am not sure what size implants I will end up with.  It will all depend on the size of the cavity when they go in.  Most likely, I will be a big A or a small B.  Although I am a little disappointed with the size, implants of any size will be so much better than these rock hard coconuts I have right now.  There are definitely some perks to having small tatas.  The recovery is around 4-6 weeks.  Just like my surgery in October, I won’t be able to lift Charlotte for six weeks, which will be hard.  She is going through a mommy only phase, but we are hoping she can handle my being less active than normal.  

More Baby Yales:

Steve and I have talked on and off about future children and if they are something we want to peruse.  I will be on Tamoxifen until I am 37, and most likely, with the new studies showing 10 years is better than 5, until I am 42.  Put this on top of the highly recommended oophorectomy I should get by the age of 40, there is not a lot of opportunity for more children.  We decided to talk to a specialist and assess our options.  I went in thinking the worst, but it ended up not being as hopeless as we thought.  We actually have a few options.  The first step will be to check and see if my eggs are viable.  I am not sure when that will be just yet, but it could be soon depending on when my plastic surgeon gives her blessing, and we may have some options available.  Charlotte is by far the best thing that has happened to us, and although we are open to hearing our options, we may not end up pursuing them.  If she is an only child, she will be loved and surrounded by lots of caring people.  Although, I do worry about spoiling her a little too much given what we have been through.

This blog:

I started this blog to keep family and friends updated on my treatment plan and how I was doing.  That continues to be the purpose of this blog.  Although, Pushing Pink Elephants, the nonprofit, is gaining momentum and is pretty much what I spend my free time on, this blog will be separate from the great organization Carey and I (alongside other great individuals) have created.  This blog is my personal story and the Pushing Pink Elephants organization will soon have its own blog (not me) helping push awareness, and the mission of the organization.  I am not sure how long my blog will continue, but I feel I should follow it through my path with breast cancer, especially for other women who are following or are starting their own journey with BC.  I will try and keep updates going as I make it through this long journey.  And it has been a long one.  Sunday I signed the hood of the demolition derby breast cancer truck that will run at the Cecil County Fair later this week.  Under my signature I wrote the date 2/10/12, which was 17 months ago.  That seems like such a long time ago, and the journey continues…………  

Research Studies (Metformin and Longitudinal Database)

I have been asked to participate in two research studies being done at Hopkins.

1. Phase III - Randomized Trial of Metformin vs Placebo on Recurrence and Survival of Early Stage Breast Cancer - I stopped this study in April 2013 after I continued to lose weight and was unable to maintain a normal level.  I will no longer be participating in this study.  

This study will help determine whether Metformin can decrease, or affect, the ability of breast cancer cells to grow and whether this drug will work with Tamoxifen to keep cancer from recurring.  Metformin is currently being used to treat diabetes.  This study will help determine if it is better to receive Metformin with usual treatments of breast cancer.  Half the participants in this study will receive Metformin in addition to other treatments, while the other half will receive a placebo.  Previous studies of Metformin have shown that it may decrease the growth of different types of cancer cells.  Meformin lowers the level of insulin, a hormone found in the blood that can be associated with worse breast cancer outcomes.  In addition to taking Metformin, blood samples are also taken at specified times during the study.  This is a double-blind study, meaning that neither myself or my doctors will know if I am taking Metformin or a placebo.

• Common side effects (likely)
• Diarrhea
• Nausea
• Vomiting
• Abdominal bloating
• Gas
• Loss of appetite
• Less likely
• Loss of taste or metallic tastes
• Minorweight loss
• Reduced appetite
• Rarely
• Rash, redness, or itchiness
• Decrease of B12
• Anemia
• Inflammation of the liver

I will start taking either the Metformin or the placebo on 1/11 when I start taking Tamoxifen.

      2. Breast Cancer Program Hormone Therapy Longitudinal Database

This study is being done to learn more about the side effects of breast cancer hormone therapy and if a person's genetic information may help to develop a way to predict the side effects a patient may have and how best to treat them.  It will also help the researchers to look at how the side effects of hormone therapy influences a participants willingness to continue hormonal treatments.

I will be filling out questionnaires periodically that will ask spesific questions about how I am feeling, if I am taking the medication regularly, and any changes to my medication list.  I completed a base line and will fill out one at 3, 6 and 12 months.  This is all computerized, so I will be able to see what has changed and it will highlight things that are out of range.  My oncologist and myself will have access to the results, and they can be used to facilitate conversation about any issues I am having.

3 Weeks Post-Op

I am a little over three weeks from my surgery.  I am feeling pretty good and getting around great.  I still have some pain, but I am no longer on pain meds, which is great.  I have a little fluid building up on both sides that causes a little discomfort.  Hopefully my body will absorb this, and I will not need it drained.  Last week I got another fill, but just on the right side.  This brings me to 275 cc's on the right and 300 cc's on the left.  Today I went again, but this time they drained all the fluid in the expander on the left and are leaving the right as it is (see next post).

Let me just say that draining all the fluid out of the left side was so painful.  The actual draining was ok, but as soon as it was done, I had sharp pains immediately.  These are the same sharp paralyzing stabs I experienced after my first fill.  I did not expect any pain today, so I went to the appointment by myself and didn't take any meds beforehand.  I am not sure how I made the hour drive back to my parents.  I had to break down and take the meds when I got home, which so far, are not helping to relieve the pain or the spasms.

Things I Still Can't Do:

• Lift anything over 10lbs (I have actually been pushing this a little bit.  Shh don't tell!)
• Sleep on my side, and it's still hard to get comfortable at night
• Get things off the top self
• Put C to bed or get her up

Expander Fill / Post-Ops

At my post-op appointment Wednesday with the nurse practitioner of plastic surgery, I received my first fill.  They did some filling right after surgery, but this was the first one I was awake for.

First off, she was very happy with my healing so far and said everything looked wonderful.  She said "This looks wonderful.  I know you don't think so, but I do."  She also said she could remove the drains.................................WOO HOO!  I was so excited, because I was ready for those horrible things to be gone forever.  I had no idea how far these tubes were inside me.  They came out right under the armpit and went under the boob and around the top to the breast bone.  The really hard things under my skin that I thought were the expanders were actually the tubes.  Before she pulled out the tubes, she wanted to do the fill.  Here are some videos I found that will help with visuals:  Video 1 & Video 2.  I will say the needle in Video 1 is what they used, but it was actually bigger.  It was like a horse tranquilizer.  She put 50 cc's in each side so I am up to 150 300cc's in the left and 100 225cc's in the right.  They are slowly rounding out some, so hopefully after a few more they will look more like boobs.  They found the port in the expander with a little stud finder.  I didn't feel the needle going in, but I felt a little pressure as the saline was injected.  Now it was time to pull out the drains.  I took a deep breath, and as I blew out in a big puff, she pulled out the tubes.  It didn't hurt, but I could feel them being removed.  It was a strange feeling to experience.  A lot of the tightness I was feeling was relieved with the removal of the tubes.

Now we have the first fill over and done with.  They will continue to do weekly fills as long as they can, depending on how I handle them.  The muscle spasms have been pretty painful.  Sometimes they are just short stabs, and other times they last for hours.  I have some muscle relaxers I take when they don't let up.  They hurt so bad sometimes that I have to stop what I am doing and sit down.  It's almost like a paralyzing pain that hits and takes your breath away.  The drive home was pretty rough and painful.

Thursday I had my post-op with the surgical oncologist.  He also said everything looked wonderful, and I was healing beautifully.  He had the pathology report, and I am happy to report there were no residual cancer cells found in any of the breast tissue removed.  So, I am officially CANCER FREE.  We will never know if the cancer was all removed with my re-excision in March since my margins were only marginally clear, or if the chemo did the trick.  Either way, it's all gone.

Cancer Free.............................sounds strange after all this time.  Instead of saying "I have cancer," I can now say "I had cancer."  Although I was very happy to hear this news, I am so focused on right now, feeling better, and the next steps to full recovery, that it was hard to be really excited.  It is exciting to think about what I have been through and survived up to this point, and how the future steps get smaller as I check things off my cancer treatment/prevention to-do list.    

I am now close to 2 weeks post surgery.  Still taking the pain meds pretty regularly.  Sometimes I can go longer than other times.  I am getting some of the range of motion back in my arms slowly.  Each day gets a little better.  I am still restricted to not lifting anything that weighs more than 10 lbs.  Even if I tried, I would not be able to do it.  Just lifting the laptop pulls, and I can feel the muscles stretching.   

So, my next steps are to continue with the expander fills and then begin radiation.  The big question now is if I decide to go along with doctor recommendations and proceed with radiation.  I have an appointment next week with my radiation oncologist to re-group and go over the next steps.  Part of my hesitation is how radiation will affect my reconstruction.  I would have a 60% chance of future complications with the implant after radiation.  This means I have a high risk that the implant will not be successful in the long term.  Over a 1-2 year period following radiation, the implant could become tight, sore, and lift up towards my shoulder.  If this happens, I would need additional surgeries in an attempt to correct it.  Hopefully following my appointments next week with my oncologist and my radiation oncologist, I will be clear on the risks/benefits and be able to make an informed decision to either proceed with radiation as recommended, or say no.  I have put a lot of faith in my doctors and to go against what is being recommended will be difficult.

Mastectomy Update

Yesterday marked a week since my bilateral mastectomy.  Time to recap the surgery and recovery so far.

We arrived bright and early Monday morning at 5:30 AM.  I got a good night sleep the night before, and I was calm and surprisingly at peace throughout the entire morning.  I met with the anesthesiologists, surgeons, nurses, and signed several consent forms.  I walked into the OR at 7:30 AM.  Kind of strange being in the room fully awake.  I must have looked a little fearful, because shortly after I laid down and the nurses were all busy hooking me up to stuff, my Surgical Oncologist came over and held my hand until I fell asleep.  Before I knew it, I was waking up in recovery.  I was extremely sleepy and felt no pain.  Not long after, Steve came in.  I was in recovery for a few hours.  Steve was in and out between the waiting room and the recovery.  I think I slept for most of the time.  I had to go potty, and the nurses gave me the options of trying to get up or the bedpan.  Of course I said enthusiastically, I think I can get up.  Yeah, not the best idea.  I made it to the foot of the bed before I saw the passing out oras.  I had Steve and three other nurses holding me up until I could sit back on the bed.  I broke out in a sweat, and I was back in bed with ice packets in a few seconds.  Guess the bedpan would have been the better choice.  Because of this instance and the fact I have passing out in my medical history, I had a sign on my door that said Risk of Falling, and in case that was not clear, there was picture of a person falling.

It didn't take long for the pain to set in, and I will say it was pretty intense.  Feels like a burning, stabbing feeling in my chest.  It was so hard to get into a comfortable position.  I was pretty much always propped up with tons of pillows.  It hurt when I moved, breathed, pretty much all the time.  The expanders are hard and very uncomfortable.  The first thing I did once I was awake and in recovery, was take a peek under my hospital gown.  Steve was there and said, "Are you sure you want to do that now?"  I figured, let's just get it over with.  They were all bandaged up, but I could see the results.  They look nothing like breasts, more like saucers.  They are flat lumps, swollen and bruised.  I know it's going to be awhile before they look and feel like breasts, so aside from the pain I feel, I am a bit detached from them.  I don't feel sad about losing them, but it is hard to look at them.  I have become very open to sharing them, however.  Pretty much everyone who visits are offered a peek at them.  I have tried to be open and honest throughout all of this, and hiding it just makes it worse for me.  They were able to put 100  250 cc's in the left and 50 175 cc's in the right.  Eventually, they will match up, and at this point, they don't even look like breasts so it does not really matter.

The drains are pretty scary looking.  They come out from under my armpits.  I feel like a science project.  I will be so excited to get these out (hopefully tomorrow).  Steve learned how to clean and dump them, a task he has been handling quite well.  I will spare more details on the drains.  They are gross, uncomfortable, and you can google them.

I was only in the hospital for one night.  I was given the option to stay an extra day, which I should have done since I was back in the ER the next day (see previous post).  I decided to go home.  It was actually harder to get pain meds when I needed them in the hospital.  The nurses were busy, and I would buzz when I was at the 4 hour mark.  Sometimes it would take another 30min before they made it in.  I figured it would be easier at home.

I am extremely limited in everything I do.  Steve pretty much did every little thing for me aside from feeding me and wiping me after the bathroom.  I said it's like he had another kid to take care of.  Instead of feedings every 4 hours, we had pain medicine administered every 4 hours.  I think showering together might become a routine for us until my arms are more reaching, although not the showers most couples have.  Steve is a trooper through it all.  I get frustrated, he gets frustrated back, but we are making it work.  This part of my treatment journey might get him husband of the year.

The first week went by and I have a hard time remembering the day-to-day.  That's what being in a pain killer induced stupor 24/7 will do.  It's pretty much a blur, and the days run together.  We have slowly cut back on the meds so it's not as bad but still fuzzy during peek med time.

A week later, I am able to do most things, but it sometimes takes me a long time.  I am still very limited since I can't raise my arm high, but slowly and surely it is getting better.  I am still in a lot of pain, and I take meds pretty regularly.  I pretty much have no energy and am really not up and about much.  I have lots of care from my family.  We came to my parents last Friday.  Charlotte and I are being well cared for.  With my sister and her three kids visiting, Charlotte is getting lots and lots of attention and endless playtime.     

I have lots of doctors appointments lined up for this week and next.  I will keep the blog as updated as I can.  Thanks for everything!!!!!

Here are a few pics to help show what's happening. 

         

Recovery - Take 2

Hello everyone.  I am planning a more in detail post about surgery, but I wanted to keep everyone up to speed on how I am doing. 

We ended up spending most of last night in the ER after I started getting chills, vomiting, and a fever early in the afternoon.  It seems to be a combination of being dehydrated, having a UTI, and extreme nausea from the strong pain meds.  I will say that in situations like these, you get pretty good ER treatment.  The ER downtown is a crazy place in the evenings and even more so when we left around 12:30 AM.  Steve said we got some mean looks and some comments from some of the other patients since we were called back so quickly.  Since I wasn't able to keep my pain meds down when we got to the ER, my pain was off the charts.  The vomiting didn't help since it made my chest hurt even worse.  It didn't take long for them to get things under control, and once I was able to eat and drink again and saw someone from plastics, I was able to go home.  

Today I am feeling much better.  The pain is still pretty bad, but we seem to be keeping it managed.  I am eating and drinking much better than yesterday, also.  The other big accomplishment is that I can pull my pants up after I pee.  It takes a little longer than normal, but hey, it's an accomplishment just the same.

Thanks for all the support and prayers.  I know a lot of people were very worried yesterday after we rushed to the ER.  Hopefully, it all continues to improve from here.   

Recovering

Erin has completed surgery and is recovering well.  She's in pretty good spirits considering she's still in a lot of pain.  At this time, it's unclear if she will be able to go home later today.  She says it feels like someone is stabbing her in the chest, and it hurts her when she takes deep breaths.  She is extremely bruised and simple tasks are difficult for her.

Erin will post more details later on.... 

Nurse Stephen