Tell all Tuesday

 Most of my blog posts have been on the inspirational side, but today I've decided to give you a glimpse into what my life is really like on a day to day basis.

Let me start with yesterday. I woke up at 5:30 in the morning which was shortly after my husband left for work. More than likely I subconsciously heard him close the front door and that is what startled me enough to wake me from a sound sleep. After getting my eyes adjusted to the early morning light that had just begun to peak into my windows; I reached toward the nightstand to retrieve my glasses. As soon as I reached over to get them I felt pain. It's easy to forget when you're sleeping that you've just had major surgery. After donning my glasses, I reach for my cell phone so that I could open up my Bible App and read the Bible. Since surgery, I’ve found it's a lot easier to hold my cell phone, which only weighs a few ounces, as opposed to my Bible which weighs a couple of pounds. I spend about an hour having my quiet time and devotion before getting up and starting the day.

It's quite a challenge to get out of bed. My husband has made a literal mountain of pillows that has helped me sleep in an upright position and be comfortable. In order to get out of the bed, I have to use my leg muscles to pull myself over to the edge of the bed and use my abdominal muscles to lift myself up. Since having all of the muscles removed from my chest and lymph nodes removed from underneath both arms, I'm unable to use my upper body without extreme pain. As I swing my legs over the side of the bed and raise myself into a sitting position, I have to sit there for a few minutes and allow my blood pressure to adjust so that I don't get swimmy headed.

I feel the weight of the drainage bulbs dangling from my chest. I feel the pulling and tugging of the drainage tubes where they are inserted under my armpits and held in place with stitches. Every movement I make seems to tug on these tubes. I slide off the bed and slowly try to stand erect. My chest wall feels strained and hollow. It is an effort to stand up straight. I manage to pad slowly into the bathroom where I go through the process of draining out the Jackson Perkins drainage bulbs. Thankfully I only have two of these drainage bulbs, one on each side of my chest. Some women have four or more after having their breasts removed. The process of draining the bulbs is slow and tedious. Each bulb has to be uncapped and then allowed to expand before the contents can be expelled. The fluid in each bulb is a bright orangey red and consists of blood, blood clots, and lymphatic fluid. There are markings on each bulb which indicate the number of cc’s. I am to record the amount of fluid extracted three times a day.

After emptying the bulbs next comes the chore of milking the bulbs. This requires me to pinch the drainage tube tightly against my body with one hand while using the other hand to slowly pull along the line forcing any leftover contents into the bulb for emptying. After the bulbs have been emptied and the contents recorded, I then proceed to get dressed. My chest is so sensitive I can barely stand anything to touch it and so I choose very large loose cotton button up shirts. Since I am unable to raise my arms over my head, button up shirts provide easier access for dressing.

By the time I am dressed, I am already feeling exhausted. I make myself go into the kitchen to try to find something to eat. I pull open the fridge door and grab a Greek yogurt. Taking it with me to my office, I sit down to write my blog. My arms hurt too badly to reach forward and touch the keys on my laptop so I choose to use a voice to text program called Dragon dramatically speaking. This program allows me to don a headset with a built-in microphone and speak what ever I want to say. The program does the typing for me. I enjoy writing in my blog every day. It not only helps me process my feelings but helps me feel a part of the real world. Being cooped up in the house all day without ever seeing a soul until my husband comes home from work is difficult. I like to be around people and feel their energy.

I sit at the computer for several hours writing my blog, answering e-mails, surfing the web. Before I know it it's time for lunch. I work my way back into the kitchen and begin to make a sandwich. As soon as I have it prepared, my cell phone rings. It's one of my daughters checking in for the day. My daughter Jamie calls me first thing every morning on her way to work. She likes to chat while she drives. She talks about her relationship with her new boyfriend or about her new job. I love hearing the excitement in her voice and this routine has become something I expect daily. She also calls me every day on her lunch break.

As soon as I hang up the phone with Jamie, my daughter Erin is calling in. Erin calls me several times a day too. She calls to tell me how things are going with the kids or ask me a random cooking question. She doesn't think I know that she is calling to check up on me and make sure I'm okay, but I do. I'm so thankful that Jamie and Erin make time to touch base with me every day.

I lift the plate and carry my lunch over to the dining room table. I'm surprised at the weight of the plate with the food on it. It seems so heavy and I struggle with it. I walk back to get a glass of water, again I'm astounded by the weight of the glass with the water in it. I feel like such a weakling! This surgery has taken a lot out of me physically. I'm just beginning to realize just how much it has affected me.

After cleaning off the table, I sit down in my recliner to catch up on a few recorded television programs. I realize as I sit down that I am in a lot of pain. Could just those little movements have caused me to hurt this much? I reach for a pain pill. Within 30 min. I find myself nodding off in front of the television. I must have fallen into a very deep sleep because when I wake up it's an hour later and I see that the UPS driver has left a package on the table by the front door. I feel embarrassed because I know that he was able to look through the sidelights beside the door and see me asleep in the recliner. I think to myself. I need to do something to cover those sidelights.

I walk to the front door and retrieve the package. It is extremely heavy. I look at the wording on the outside of the package and it says "keep a breast foundation.org". Now I realize this is the breast casting kit I had ordered several weeks ago and expected to receive before my surgery. It's a little too late and that makes me sad. It would have been so nice to have received this in time to make a breast cast before my mastectomies. I take the kit and put it away hoping I'll find someone to give it to in the future.

It's after four o'clock now and I decide to do some reading. I pick up several books on breast cancer and find one that I want to read. The book I choose has helpful information on getting through chemotherapy and radiation. As I read it I become overwhelmed and have to put it down. My brain feels like it is in major overload mode.

I just realized I did not empty and drain the bulbs at lunch time! I hurry into the bathroom and go through that whole process again. It is disgusting seeing clots of my own blood collected in these clear drainage bulbs. I am thankful I do not have a very weak stomach otherwise I would be unable to do this by myself.

I hear the back door opening and hubby coming in from work. He shouts in an energetic "hey honey, I'm home"! As he comes in the door he hands me the mail. This is the highlight of my day. Among several bills are a handful of greeting cards all addressed to me. I feel so special and so loved. Many of my friends have taken time to write me a note of encouragement. I sit down and savor each one by reading it over and over.

Hubby goes to get a shower and I tried to figure out what I'm going to make for supper. I'm not strong enough to lift the heavy cookware. I don't have anything frozen that I can just pop into the microwave or the crockpot. How I wish we had friends here that would be willing to help make a few meals. The easiest thing I can fix is hot dogs. I am sad because I don't want to serve my husband hot dogs after he's worked a long hard day. I don't have strength to cook anything else. He doesn't complain and I'm thankful.

After dinner we sit down to watch the news. I can't get comfortable in the recliner and ask him if he can help adjust my pillows. He gets up and comes over to help me. The drainage tubes are really pulling against my skin. I'm wondering if they have gotten infected. I asked him if he will look at them later and change the bandages. He says he
will.

We sit and watch “The Bachelor” together. I think it's funny that my husband has gotten so much enjoyment from the program. We make comments and laugh. It's good to have someone to talk with after having had such a lonely day.

Soon the show is over and it's time to make hubby's lunch for tomorrow. I try to bend over and pick up his lunch box but it hurts too much. He has to hand it to me. After getting his lunch prepared it's time to go to bed. Hubby readjusts the mountain of pillows. I look at the pillows and am thankful that we have so many! Without them there is no way I could get comfortable enough to sleep.

I ask hubby if he can help me wash my hair before bed. He walks into the bathroom and adjust the water temperature. As I lean over the shower he pulls the showerhead down and begins to wet my hair and the front of my nightgown and my feet! I began shouting at him that he's getting me all wet. He apologizes and tries a little harder. Finally he finishes and hands me a towel to dry off with. The entire front of my gown is soaking wet. I do the best I can to dry it off.

 

It's time to go through the process of emptying the drainage bulbs again and milking the tubes. I'm thankful that hubby helps me this time. Slowly he helps me remove my nightgown and take down the camisole top. He inspects the bandages and removes the ones that need to be replaced. Carefully he tapes new gauze over my incisions. As he pulls off the old tape, I have to remind him to be gentle. My skin is super sensitive.

After we're done he helps me put on my nightgown again and make sure the bulbs are pinned safely out of the way. He waits patiently beside me as I use my legs to inch my way slowly onto the bed and up to the mountain of pillows. I am exhausted after I finally get situated. He turns out the light and crawls into bed. I lay there with tears running down my face. He tells me not to worry that things will get better soon. All I can think is this journey has just begun. I know when I go for my post op visit on Friday, I'll get information on the pathology findings from the lymph node removal. I'll probably find out that I'm to have chemo or radiation along with hormone therapy. There are many unknowns coming down the road. Hubby tells me to take one day at a time and I'm trying but it's not easy....