Homebound…now what?

After a number of days in the hospital, I was able to head home to try to recuperate and build up my strength.

I arrived home with pain meds in hand, drainage tubes pinned to my camisole, and an abdominal binder to provide support to my weakened core. The recliner chair in our sunroom was calling my name and I gladly settled there with a number of pillows to prop me up, some comfy blankets to keep me warm, and 2 small tables full of anything I might have needed within an arm’s reach.

Little did I know that that is where I would be sleeping for the next month.

Having surgery on my abdomen, made me feel pretty taut and hunched over. The thought of laying down flat in a bed did not appeal to me one bit, so I spent my days AND nights in that comfy recliner chair. (Have you ever tried to sit up in bed or get out of bed for that matter, without using your abdomen muscles? You should try it sometime..you’ll find it’s pretty much impossible to do unless you practically roll off the bed…which I don’t recommend. *smile*)

For the first week that I was home I had lots of visitors and help. People brought food, goody baskets full of gifts and thoughtful notes to brighten my day. My dear college friends  even spent a number of hours helping me clean, prep meals, do laundry and whatever else I needed done. I felt (and still do feel) very blessed to have such wonderful people in my life!

My days consisted of sleeping quite a bit and trying to keep on top of what meds I needed to take and when. I also had a number of drainage tubes that needed to be emptied and recorded twice daily. For those of you that are not sure what drainage tubes are….they are commonly used after surgery to help relieve fluid build-up. In order to avoid complications and infection, the tubes are inserted into the surgical area and they are connected to a plastic bulb on the outside of your body that acts as a drain. Once the output of the drain is down to a small amount, they may be removed by your surgeon.

Besides having help to empty my drainage tubes each day, it also seemed to be quite the production to just get a shower in. In order for me not to feel added pressure at the tubal incision areas (from the weight of the drains just freely hanging there), I had to wear a ribbon necklace to safety pin them to as I showered. Once out of the shower, I needed to apply Aquafor (a healing ointment) to all of my incision sites, put on my camisole and abdominal binder and then reattach my drainage tubes with safety pins. By the time I was all clean and dressed…I was ready for a nap!

My drainage tubes were removed after about a week’s time, but my abdomen still seemed pretty swollen. About 2 days after the tubes were removed, I had an appointment with my Oncologist for a checkup and my tri-weekly Herceptin treatment. When I got undressed for my check-up, I noticed that my abdmonen incision was leaking all over the camisole I was wearing.  My Oncologist seemed concerned about the possibility of an infection and she encouraged me to get it looked at by my surgeon.

After a call to the surgeon’s nurse, she had me come in that afternoon. The surgeon was off that day, but the nurse bandaged it up, gave me a prescription for an antibiotic and told me to come back the following week to have it looked at.

When I came back in the following week, the surgeon decided to aspirate my abdomen with a big needle to collect fluid to send away to the lab for review. Although my abdomen still felt numb from surgery, the idea of her using that big needle made me kind of nauseous. L Thankfully it was over with shortly and we received good news from the lab….NO infection! Hooray! The doctor encouraged me wear extra bandages until the leaking subsided (which didn’t happen for a couple of weeks). (Note to self: extra bandages will be needed when drinking wine and laughing with friends! HA! That’s what I get when I go for a scrapbooking weekend away with good friends! Good thing I brought along an extra camisole to wear.)

So, what do you think the first question was that I asked my surgeon at my checkup? You got it! When can I play volleyball? J The answer to my question was that I needed wait a while to heal (and jumping and diving were probably not the best things to be doing too soon in my recovery). Originally, I didn’t think that I would be able to play ball until the beginning of February (about 12 weeks out from surgery), but I was pleasantly surprised when she gave me the green light to start playing in mid January! Woohoo!

Getting out on the court was fun, but I knew I had a lot of work to do! I was overweight, had no core strength to speak of and I had to get used to a new distribution of weight AGAIN (having a chest, having no chest, having a chest….it’s all about balance and getting used to your center of gravity).

It took weeks, and a number of workouts (cardio/weights) for me to feel close to normal back out on the court again…and boy does it feel GREAT! Every time I play volleyball I am in such a HAPPY place. I am so thankful to not be held back by the effects of chemo, radiation, and surgery anymore!! I promise to not ever take that for granted again…

Other things that have been happening in 2014?

-       Well, on Valentine’s Day I went in for my 3 month check-up with my Oncologist and she noticed a hard mass above my left breast. She told me she thought I should have an ultrasound done THAT day. *instant tears* WHAT???? That doesn’t sound good at all. L My anxiety level went through the roof as I contemplated what the weight of that statement really meant. Please God don’t let it be cancer…please, please, please!!

It was a long afternoon as I waited to have an ultrasound done on my chest, but it became even longer when the doctor reading my results thought that we should do a CT scan as well, just in case. WHAT??? More tests?? That doesn’t make me feel very good. I am sure you can imagine the prayers I kept repeating over and over again in my head. I needed strength to get through this and that was the only way I knew how to find it. After an emotional afternoon, I finally received a call from my doctor saying that it was NOT CANCER! Since cancer was not detected, they believe the hard mass was just scar tissue left over from my surgery. R-E-L-I-E-F. Just another reminder that you need to embrace life each and every day!

-       Next up….Good Friday. Again, back at the doctor for my tri-weekly Herceptin treatment. This time, the machine taking my blood pressure, says my heart rate is low. It seems pretty low to the nurse, so she says she would like to take it manually. Still lower than it has been in the past…this doesn’t seem right, so she puts a call in to my doctor. Doctor thinks I should have an EKG and an Echocardiogram done on my heart THAT day. AGAIN? I think I might need to have a glass of wine before going in next time. These extra “same-day” tests are kinda stressing me out!

Herceptin is known to cause damage to people’s hearts, so I have been getting an Echocardiogram every 3 months for the past year and everything has been fine. Now I am nervous! Good news is that they couldn’t find anything wrong with my heart. They think that the lower heart rate may be a result of me working out more than I have in a very long time. That’s it? THANKFUL once again!

-       May Day! It looks like I have a little theme going on here….holidays are a good way to keep track of dates anyways. J So what is going on tomorrow, you might ask? Well…it is my last surgery. It won’t be anything like my surgery in November…this one will be about 3 hours long and I will get to go home afterwards. What am I having done this time? Well, my plastic surgeon will be evening out the work she did in November. She will be smoothing out the sides of my abdomen since they seem out of proportion with the front of my abdomen and she will be resizing my left breast to match my right breast. (She originally made my left breast bigger, since that is the side I had radiation on. Skin behaves differently once it is radiated, so she wanted to let it settle before she reshaped it to match the other side.) Since I was going to be under anyways, I asked her to remove my port as well. I only have one more Herceptin treatment left, but I will just have to have it given to me in my arm instead.

I am sorry that my last two posts have been quite lengthy. I guess that happens when you don’t blog for 4 months! (Shame on me, I know!) I wanted to get you updated on where I have been since the last time I wrote and I guess I had A LOT to say!

Here are some more pictures to share….

I hope to write another update after surgery sometime!

Love to all,

Nae

Reconstruction Surgery….the REST of the story.

So I got a little (ok A LOT) sidetracked on my blog with inspirational messages and holiday wishes during the months that followed surgery. I haven’t had a chance to circle back to the rest of my story…until now.

As you may recall from a previous post…I spent pretty much ALL day in surgery on Tuesday, November 11^th. My incision started at one hip and traveled all the way across my abdomen to the other hip. Essentially…my “muffin top” had just been relocated to my chest. J (*insert lots of fun cheers here*)

They continued to keep a close eye on me in the days that followed. Vital signs, Doppler readings, checking incisions, emptying drainage tubes and the dreaded 1^st time I tried to get out of bed. Wow. They really mean it when they say that you don’t know what you’ve got until it is gone! Gone was the simple motion of just being able to sit up without assistance! Why was this so hard? Oh yes, your core is responsible for helping you do a lot of simple, everyday life things; sitting up, turning over in bed, standing up, lifting things…the list goes on and on.

Thank God for the hospital bed that could raise and lower me at the push of a button! It took at least 2 hospital staff to help me get up out of bed to a standing position, only to walk about 3 steps to sit down in a chair. It was painful and I didn’t like it one bit! I had to have them put extra pillows behind me on the chair because the simple act of leaning back slowly to sit in the chair was not so simple any more. It hurt and I couldn’t wait to get back in my hospital bed. Since I was in a lot of pain and it was hard for me to get up and move around, they decided that I could leave my catheter in for an extra day. (Yay for not having to go through a lot of pain just to walk to the bathroom!)

Another thing that the staff wanted me to do was to practice deep breathing. When you are under anesthesia for surgery, your breathing is slowed way down and you don’t take as many deep breaths. Because of this, your “alveoli” (little air sacs) don’t fill with air and you can experience complications like pneumonia.

To avoid complications, they gave me a little plastic “spirometer” to breathe into. It had a tall measurement tube with a ball inside of it. Coming out from that, was another tube that I needed to purse my lips around and blow into. The ball inside would rise with every one of my breaths and the height of the ball was proportionate to how much air I exhaled.

It seemed like a menial task and I didn’t see a lot of value in doing it early on, so I didn’t really do it unless my nurse asked me to. I did end up having a change of heart however, when I experienced a tight chest and difficulty breathing the night after surgery. I don’t care what anyone says, when you don’t feel like you can take deep breaths, it is kind of scary! I called the nurse and she encouraged me to get up out of bed and walk around to get my lungs working more efficiently. Get out of bed? UGH…do I have to? That’s not the easiest of tasks at this point in time.

I didn’t have a ton of options though…the breathing bothered me SO much that I did it anyways. Getting out of bed was tough, but walking around wasn’t as bad as I thought it would be. I took a little stroll down to the end of the hall with my little IV pole in tow and then meandered back to my room to try to rest. Thankfully, that seemed to do the trick…my breathing felt more normal and that made it easier for me to relax. 

The next evening, my dad (who had been staying at our house with the kids, so that Aaron could be with me at the hospital for the duration of my stay) brought the kids in for a visit. My sweet friend Tina (the extremely talented photographer), also came to the hospital to help me capture the visit in pictures. (Thank you Tina….I truly CHERISH all of the photos you took of my journey!! Bless your heart for helping me with this!)

When my family arrived, we decided to take a walk down the hall to the “Elsie O. Mitchell Meditation Sanctuary”. The warmth and peacefulness of this room was so inviting….had I not been dressed in hospital clothes, it would have been easy to feel like I was at a spa. Each of the elements in this room served a purpose (described best by the write up from the hospital’s Web site):

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A space of healing and rest

“The Elsie O. Mitchell Meditation Sanctuary includes symbolic elements common to many faiths and traditions.

Prayer wall
Inspired by the Wailing Wall in Jerusalem, this prayer wall is a reminder of the spirit that connects us all. It is a sign of our common humanity, a shelter to gather our hopes, fears, laments and joys.

Meet the heart of God. Let go, offer up, release.

Fire element
Fire symbolizes Divine presence, community and passion. We experience this sacred fire through belonging, inner peace and wisdom. 

Gather near the fire and radiate its warmth.

Water element
Water symbolizes life, renewal and healing. Find rest beside the still waters.

Listen…receive…be refreshed.

Labyrinth
Walking the labyrinth is an ancient spiritual practice that invites us to journey inward.

Walk the sacred path with openness. Reflect. Surrender. Embrace the mystery. Listen for the spirit within.”
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What a beautiful, harmonious place for patients and their families to escape to during their hospital stay. Kudos to Elsie O. Mitchell for her generosity in creating such a space!

You can click on the photos below to enlarge them (photos by Tina Vega Photography).

Another post to follow on the days and months after surgery…

Thanks for reading along. J

Love to all,

Nae