Hope

It has been almost two weeks since my bilateral mastectomy, and I’m surprised to admit this even to myself, but I feel blessed. Don’t get me wrong, my muscles ache as though there’s a vice grip around my chest, severed nerves periodically fire back to life with searing hot pain, and the drains absolutely disgust me. My underside of my right arm is covered with slowly fading bruises from the multiple failed attempts to start an IV the morning of my surgery.

But there is hope. There is hope that the worst is behind me.

The breast surgeon informed me three days ago that the margins around the tumor were clear and that the sentinel (closest) lymph node was clear of cancer. The oncologist let me know the next day that because my cancer was considered non-aggressive, low-risk, and hormone receptive, I do not need chemotherapy. Instead, I will be on endocrine therapy in the form of Tamoxifen.

I have had much time for reflection since my surgery as I sit here in my recliner both day and night. This is what I’ve learned so far:

  1. I am loved and cared about.
  2. It’s OK to say “screw it” to a lot of stuff…a lot of stuff really isn’t that important.
  3. It’s OK to ask for and receive help.
  4. Having cancer means doctor’s appointments…a lot of them.
  5. It’s important not to overdo it.
  6. It’s important not to under-do it.
  7. Life is too short to put one’s happiness on the back burner.
  8. I have to stop telling myself, “Maybe when you retire, you can…” because I may not be around that long.
  9. I need to say “No!” more.
  10. God will always keep me guessing.

What I have come to realize most of all is that I’ve tried to control too much and have worked too hard. I have been racing around chasing my own tail, trying to please others, second guessing myself, and misplacing my priorities. I have allowed myself to be used up and taken advantage of. I felt like God was happy with this, that He was using me for His good, (and some part of me thought that I was maybe being punished), but now it is clear to me that I am on the wrong path. If I were on God’s path, life wouldn’t be this hard. I would have time to devote to reading the Word, meditation, and deeper prayer, and I would rejoice in my vocation. I would also feel joy and peace, things that have been severely lacking in my life the last couple of years. Instead of feeling hope, joy, or peace, I  have been feeling beaten down, barren, and lifeless. I have not been bearing good fruit.

This will change. God is in control, and I will have faith in him, for “What is impossible with man is possible with God.” (Luke 18:27)

At this difficult time in my life, I know that God is calling me to rest and to hope.

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Photo found at https://www.flickr.com/people/dafongman/ using Google Advanced Image Search for pictures in the public domain.

 

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Anger

Tuesday night I was angry…SO angry. It’s been many years since I’ve felt so angry, and I didn’t know what to do with all that anger. I was tired from open house the night before, work was stressful, then I went to see my mom at her assisted living and she accused me of stealing her wooden hangers. (I’ve never known my mom to have wooden hangers by the way.) On my way home, I started crying and then yelling about how life was so unfair and why was all this happening to me.

By the time I got home, I was seething. I slammed doors and yelled some more. I then got in bed and balled my eyes out. I wanted to give up, and I was very close to calling off the surgery. My husband was very caring and just lied with me, rubbing my back till I calmed down and went to sleep. The next morning I felt a little less angry though I chose to listen to Metallica instead of Debussy on my way in to work.

Being around teenagers can be stressful, but you have to stay calm, collected, and “never let ’em see you sweat”. Therefore, I put my anger and sadness aside to get to know my new library aides better, make ID’s, conduct librarian orientation scavenger hunts. I was back to my old self pretty soon, but I’m still struggling at times while I’m not at work. I’ll hear a song or read something and then the tears start welling up and I wonder what I’m supposed to get out of all this. Is this supposed to make me more compassionate, or is it supposed to help me in some other way? Am I supposed to be steered by this into making some life-changing decision? Is God letting the devil test me? Am I meant to die in surgery at the age of 43? What’s the meaning of all this? I want to be stronger than this, but I’m struggling. I just really wish God were a bit more forthcoming. I find comfort in the Psalms and other passages of the bible, but it’s still hard. I wish all of this were over.

 

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Cancer

Well, as you can tell from the title of my latest post, I got some bad news. It started with an abnormality spotted on my 3D mammogram in July. (I got the call the first day of my vacation…naturally.) This was followed by a sonogram and a biopsy the following week (which hurt a helluva lot more than they told me it would), and four days later, I received a diagnoses of Stage IA breast cancer. I have a small tumor that has broken through a duct wall but, luckily, has been deemed non-aggressive. A lymph node nearby looked suspicious (thickened), so the radiologist biopsied it as well, but it came back negative.

This has been a bit overwhelming to say the least. We never had any cancer in my family, that I knew of, until my sister was diagnosed with breast cancer last year…not my mom, grandmothers, aunts, or three other sisters. Now I’ve been diagnosed as well.

I got the call on August 4th with the diagnosis, but I haven’t felt like writing about it yet. I’ve been vacillating between shock, anger, sadness, and acceptance. I’ve had two bouts of crying myself to sleep and a whole lot of praying to God, words that typically go like this: “God, was Lupus and Dermatomyositis not enough?” I had accepted in the last couple of years that sometimes $#!^ happens, and it’s not punishment. Our bodies aren’t perfect and they break down with age. Unfortunately, I’m having trouble accepting that right now. I knew my immune system was messed up and have known that for many years, and I knew that having Dermatomyositis increased the chance for cancer, but I never expected this. I feel like I’m being kicked while I’m down.

I called my Rheumatologist almost immediately and found out that  I have to get off he Cyclosporine, which I started taking a couple of months ago. It was starting to help me feel somewhat normal again, but now I can’t even take that anymore…at least not until I’m healed from my surgeries. I get to stay on Prednisone and Plaquenil, but the Prednisone may affect the healing from the surgery and reconstruction. It’s a low dose (5 mg), so we’re hoping it won’t. I’m not a candidate for lumpectomy and radiation because radiation is not advised for people with connective tissue disease. Apparently, it causes significant fibrosis (tissue scarring), resulting in contracture which looks bad and is very uncomfortable. Consequently, I’m going to have a double mastectomy on September 12th. I opted for the double because I don’t want to possibly go through this again later which is certainly a possibility since I’m relatively young, have a sister who had cancer, and I have Dermatomyositis.

I’ve met with the breast surgeon and the plastic surgeon and will meet with an oncologist soon after the surgery. I’m so overwhelmed by all the appointments, and I know this is just the beginning. Please pray for me as I go through this. I’m not so much afraid of dying (I’ve been dealing with that very real possibility of dying young since I was diagnosed with Lupus at 23), and my faith is very strong. What I DO fear is pain!

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Respite

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After several months of looking after my mom after her heart attack and onset of Dementia, she recently went into an assisted living facility where I visit her everyday. Having her someplace where she could socialize and have the constant help she needed was a weight off my shoulders. However, I suddenly felt like I needed to get away before school starts, so I could feel truly refreshed before facing so many teenagers again. I identified with Psalm 55:6, “Oh, that I had the wings of a dove! I would fly away and be at rest.” Subsequently, my husband and I went to the Ozarks last week, specifically Eureka Springs, Arkansas.

I had not been to Eureka Springs in over twenty years, and I forgot how both beautiful and transformative it is. Located close to Branson, Missouri but within the border of Arkansas, this sleepy hamlet sits high in the hills and necessitates going up some pretty curvy highways with beautiful scenery along the way.

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Once we arrived, we visited Quigley Castle, known as “the strangest dwelling of the Ozarks” because the woman who built it with her husband incorporated nature into it anyway that she could, creating bricks from stones and shells she’d collected since she was a girl and installing 38 windows to allow lots of light to come in for the plants that were actually planted in open ground along the inside margins of the house. My favorite parts are the butterfly wall and the gardens outside. It’s a very peaceful place out in the country, and I could’ve easily stayed all day, watching the butterflies sipping nectar from the abundant flowers.

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Later that day, we visited the Christ of the Ozarks statue which is 67 feet tall and 65 feet wide. The sun was perfectly positioned to provide a halo. Again, my husband and I were able to sit and enjoy some quiet and solitude. The only sound was the singing of the cicadas in the surrounding evergreens.

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That evening, we attended the Great Passion Play, an outdoor re-enactment of the final days of Jesus, and it was amazing. If you ever go to the Ozarks, you really must attend. There are dozens of actors as well as sheep, camels, donkeys, horses, etc. The lighting and sound effects were excellent, and I got to see some old friends I’d missed…fireflies. They’re pretty scarce in the Dallas/Fort Worth area.

We also visited Cosmic Cavern, Turpentine Creek Big Cat Refuge, and Beaver Lake. All of these places reminded me of how truly great and wondrous God is in providing so much beauty and diversity around us that we take for granted.

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I’m so thankful that we made the decision to drive up into the hills for a vacation. It’s important to make time to recharge our batteries. God gave us an example of this by resting on the seventh day after he created the universe. He didn’t need a rest, but he modeled it for us. In the same way, Jesus took a break from the crowds with his disciples to go to a “quiet place” to “get some rest”. (Mark 6:31). If we don’t care for ourselves, how can we care for others and dedicate ourselves to our purpose? Now that I’ve had a break, I know that I can face whatever tribulations may be coming my way and can say that it is truly well with my soul.

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A Lesson in Empathy

This last week and a half has been a whirlwind of activity. My mother suddenly asked when I was going to start helping her find another place to live which really took me by surprise. I knew she was bored sitting around my house all day and watching TV, but I didn’t think she was THAT bored. I had just toured one assisted living facility by my house, and the staff seemed nice. They also have activities that she enjoyed at her retirement resort in Tennessee such as bingo and happy hour, so I told her about it. She wanted to see it, and once she did, it turned out that she liked it very much. We spent last week making preparations for the move and then I took her to the zoo on Saturday since she had really wanted to go. Each day since her move on Monday, I’ve gone to visit, and she seems to be settling in very well. I feel so blessed since I know that many families struggle with this type of transition. I’d been praying hard (I’m talking about the praying that involves tears, asking for mercy, praising God, and begging) for help and guidance since my mother needs so much assistance, and I’ve been struggling with my own health issues. I truly believe that God intervened as he has in the past when I’ve felt overwhelmed and desperate.

I was also blessed to learn a valuable lesson through this experience. Yesterday, when I logged into an online course I’m taking this summer for the first time, I discovered that it’s not as self-paced as I had been led to believe. The course is being offered by the school district in which I work, and I found a message from the instructor asking if there was any confusion since had not logged in and done any course work. I clicked on the syllabus link and found that I had already missed some due dates. I immediately replied to the instructor’s message and explained my mother’s situation. I went on to explain that it has been a very trying time for us. He was very understanding in his response and said that I could go ahead and proceed with the course when ready. I felt mortified though. I’m not the type to ever make excuses. I’ve always met deadlines, and I consistently meet expectations. I pride myself on these qualities.

As the day wore on and I went through my course work, I continued to feel badly about neglecting this responsibility. I suddenly realized, however, that I should not be ashamed and that I was being too hard on myself. My priority was my mother…as it should be. Then I started thinking about others I have known and worked with who seemed to struggle with meeting deadlines or fulfilling responsibilities, and while it’s true that some people don’t plan well or procrastinate, I realize now that many people have complicated lives due to children, parents, or siblings, and I need to be careful in judging others. Weathering a storm can provide valuable perspective, and I believe this situation has helped me to become more compassionate, not just towards the elderly as I thought it might, but towards everyone.

I guess God not only answered my prayer for help with my mom, but he’s also answering my continued prayer that he will shape me into the type of person he wants me to be. It’s hard, but I know it’s necessary to achieve my purpose here on Earth and beyond.

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Photo by Annie Spratt and located at Unsplash.com
https://unsplash.com/search/storm-rainbow?modal=credit-badge&photo=JZfOkBZDoco
 

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Straight Paths

Recently, my mom’s Dementia took a pretty bad turn. Two Fridays ago, I came home to discover that my mom was in a foul mood and was accusing the neighbor kid from next door of lying to her. Really, it came down to his answering her question truthfully, but his answer did not align with what she thought he would say; therefore, she thought he was lying to her. When I explained the misunderstanding, she said he was “getting smart” with her. Then she said she “wanted to go home”.

I had read that people with Dementia will often say this especially if they have been moved somewhere. My mom came to live with me five months ago after a heart attack because she couldn’t live on her own anymore. The manager of her independent senior apartment complex said she had been struggling, and from the stack of unopened mail on her end table, the loads of laundry in the washer, dryer, or stacked on the dryer, as well as the funny smell in her apartment and rotting food in the fridge, I could see his point. She was relieved and happy when my husband and I asked her to move in with us, but now she has forgotten about the heart attack and how difficult things had become.

“I want to go home!” she repeated the next morning. I had hoped she’d forgotten being upset, but she had not. I told her that she could not go home because her health problems would not allow her to live on her own anymore, and they would not allow her to move back because of her poor health. She said she didn’t want to live with us anymore. When I told her that we could move her into a place nearby (I didn’t use the term assisted living facility or nursing home knowing she would freak out), she asked how much they cost, and because she can’t seem to remember that she has plenty of money in savings and a decent income each month, she, of course, freaked out. That Saturday was awful with her yelling and my crying off and on all day.

The next morning, I woke up barely able to move. I loaded up on Prednisone and went back to bed only to lie there feeling horrible for the next half hour. I then got up. I could hardly raise my arms, so my husband helped me wash and fix my hair. I recently started Cyclosporine, but I haven’t noticed a difference yet. My husband and I went to church, and I silently cried off and on throughout the service. And when I got home, my mom asked to go home again. I told her, “This is your home now. Why do you want to leave?” She said, “I don’t know. I just know that I got upset.” I asked her, “Do you know why you got upset? She responded, “No, I just know that I was.” Less than 48 hours had passed but she had already forgotten why she had been angry and thrown a huge fit. I couldn’t believe this was the same Italian mother I grew up with who had held grudges for decades!

I reminded my mom why she’d been upset but assured her that the neighbor boy wouldn’t be coming over anymore. (We had discussed mom’s condition with him outside and let him know that, while we would still be happy to ride our bikes with him or walk our dogs with him, he could not come into our home anymore.) Mom seem placated and she’s been doing pretty well though there was a debacle last week over my replacing her “new” bras because they were falling apart and the hooks on them were rusting.

On Mother’s Day, I kept thinking, Oh, God. What’s going to happen? How is this thing going to play out? Are we going to have to have her hauled out of here one day by the police to the hospital for psychiatric evaluation and have her taken to a memory care facility from there?  I became completely overwhelmed by fear, and that’s not something I should do as a Christian. Fear leads to despair and a loss of hope, and I’m determined not to let that happen. So what if my husband lost his job, I lost my health, and my mother lost her mind? I will put my trust in God, confident that good will eventually come out of all this.

trust in the Lord

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Flare

I wish I could say that the title of this post refers to a positive definition out of Webster’s dictionary such as “a sudden brief burst of bright flame or light,” but I’m sad to say that it doesn’t. In this case, it refers to the flare up I’m experiencing in my autoimmune disease(s).

I had been doing quite a bit better since greatly reducing my gluten intake, but my condition has worsened again. I’m not sure if it’s because of stress or exposure to sunlight or trying to get off Prednisone as my rheumatologist insisted, but I woke up one day with intense joint pain which I haven’t experienced since my days of Lupus. I’m also exhausted and getting chest pains off and on.

I went to see my rheumatologist who said my joints seemed terribly inflamed and that I needed to increase my prednisone and get the inflammation under control before I can even consider getting off prednisone again. *sigh* One step forward, two steps back.

The tests results are back, and the good news is that my muscle enzymes were normal for once. However, my complement level is low, my ANA is positive again, and my C-Reactive Protein is high. Some of my other numbers are off as well, but my doctor didn’t say anything about those. What she did say is that I need to start Cyclosporine. I’m just hoping it’s not like Imuran, Cellcept, or Methotrexate all of which make me run to the bathroom every 15 minutes. Luckily, the school year is almost over, so in six weeks I can get plenty of rest as the Cyclosporine kicks in.

OK, so I’m sorry to be a Debbie Downer. I usually try to be all positive and upbeat in my posts, but I also want to keep it real. So where is the positive? The positive is that I’ve backed off on some responsibilities. For instance, I removed myself from a committee at church. There are a couple of new people on the committee who can pick up where I left off. I’m still serving my church in a couple of other ways that do not involve my going to meetings at night when I should be getting ready for bed.

I’m also asking questions of God when I pray, and even though a certain preacher recently stated that there’s no point in asking why bad things happen and that we just have to accept that life isn’t fair, I think that asking why is an acceptable form of prayer in a close relationship. I don’t think God minds us asking why when we are heavily burdened as long as we continue to honor him as well. Would a parent mind his child asking him a question? God gave us a brain that attempts to rationalize, did he not? Therefore, I’m leaving you with the following video clip of Queen Latifah in Last Holiday because it’s not only a great scene, but I think it captures how I feel right now.

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