When Words Don’t Mean Enough

Thank-You-Photo-1

These words seem so trivial to express what I wish to convey. The outpouring of love and compassion has been overwhelming, and all three of us are in awe of your caring spirit. Friends have offered practical help — such as setting up meals for us — but also emotional help. I’ve had several friends offer to listen if I want to scream or cry in my frustration. Be forewarned, I may accept both offers.

Some of you barely know me, but our worldwide brotherhood has allowed us to have strong bonds anyway. Some of you have the ability and talent to see feelings and emotions in me that I am just discovering for myself. Some of you know just which scriptures I need to hear.

You will continue to amaze me by your insights, and please know that each and every word — spoken or written — I treasure. I may not express my gratitude fully enough. Some words may hit me so sharply that I cannot respond without losing my composure. Some words may be so truthful, I’m not ready to hear them yet. And some may simply come while I’m medicated and unable to remember. What I won’t ever forget, though, is how your words have made me feel.

 

My friends have made the story of my life.
Helen Keller

With my first foray into breast cancer, I had virtually no pain, other than what was associated with surgeries or procedures. Nothing that couldn’t be treated with Percocet. This experience is totally different. This time around there was immediate discussion of pain management. I was given Morphine almost immediately, and then Dilaudid as I was admitted.

The hospital doctors were hesitant to give me anything too strong at my release; however my Oncologist is familiar with the pancreatic pain associated with these types of cancers. He has me on two 25 mcg patches of Fentanyl, and Dilaudid 2 mgs every six hours as needed. Unfortunately, I’ve needed all of these, and sometimes I still have pain after taking them all.

We had our circuit assembly with the Branch Representative this weekend. We’d hoped to stream it, but it wasn’t uploaded yet. I really did want to attend, but I also didn’t want to risk getting sick. Plus I’m still not feeling like myself. Instead, we stayed close to home, did some personal study, and spent time together the two of us (our son went to the assembly with Nana and Papa).

Your cards and notes have already started appearing and brightening my days. I’ve gotten funny memes and greeting cards; notes of support from those I barely know. I’m reading each card, each comment. I’m listening to your sympathetic tones of voices.  It may be through a a dazed mind, but I am listening and appreciating your love for me.

I’ll continue to keep you posted.

xoxo

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Chemo Teaching & More

Today I had something called “Chemo Teaching.” Basically this means that one of the Nurse Practitioners on staff tells me all of the possible side effects of Chemotherapy, and then explains what is really likely to happen.

Nausea is likely, but I already have two prescriptions to help with that. Plus, I will receive anti-nausea meds ahead of the Chemo infusion. Fatigue is possible, as is anemia. My white blood cell count will be monitored very closely.

I’m likely to lose weight, but retain water and appear puffy. My hair will be gone within one to three weeks. Tonight I discussed this with the kid. He laughed when I said that I will be “bald,” but he thinks he will get used to it. He’s not quite on board with buzzing his head as a show of solidarity. And that’s OK. We cannot expect too much of a nine-year-old whose mom has Cancer and is going through Chemo. Both are scary words for him.

Between the time change and the anxiety of the diagnosis, I am only sleeping about six hours a night. Therefore, I am unreasonably excited about having my procedure tomorrow and being under anesthesia. A whole day of sleep is wildly appealing to me.

Speaking of tomorrow’s procedure … I am having something called a Port or Porto-Cath put in; it connects directly to my blood vessels. This is the site from which I will receive Chemo and have blood drawn. I will also have something called a Sentinel Node Biopsy. When I had my breast MRI, one of the lymph nodes lit up. The Sentinel Node Biopsy will help to determine how many — if any — nodes are involved.

In preparation for tomorrow, I was instructed to shower tonight and tomorrow morning with antibacterial soap. Tonight, in hopes of being able to blissfully unwind (yeah, right) I took a leisurely shower. I washed my hair and face, used the antibacterial soap, and shaved my legs and under-arms. As I completed this, I realized that I pay more attention to what my surgeon may or may not glean from my shaving or lack of shaving than to how my husband feels about it. Sadly, I want my surgeon to think I have it all together (Ha!), more so than my Hubs. Sorry, babe … maybe it just means I know that you won’t judge.

Now I will watch two more of my crushes: Shemar Moore and Matthew Grey Gubler. Criminal Minds is my fave show. Please oh please … could one of you show up in my dreams tonight?

xoxo

Marriage, Parenthood, and Illness

Bear with me this evening as I attempt to gather my thoughts …

Fifteen years ago — on October 22 — I married my best friend. I’ve only ever been in three relationships. The first was as a teenager, and it was full of poetry, drama, hidden issues, and eventually heartbreak.

The second was one of those “storybook” romances … I moved into the same area as a young man who, when we were children, my grandmother insisted I would marry. Sadly, the romance included “conditions” that I eventually decided I would never be happy conforming to.

As a young adult, I was convinced I’d marry someone I’d known my whole life. As it turns out, I married a man I met one evening at an innocent get-together. We dated six months before he asked me to marry him, and honestly I was already planning our wedding. He was so refreshingly different from my previous suitors … protective, hilarious, and sweet (not romantic, but there was no doubt in my mind about his feelings towards me). My mother has said that her primary memory of our courtship (I lived at home) was laughter. We had many differences in background, maturity, and interests. But with him, I was safe.

Ours was a whirlwind romance … we married one year to the day after we met. We did so much getting to know each other in those first years of marriage. Did we have struggles? Of course! But even when doubts crowded my mind, I held onto three things: 1) This man loves me like crazy; 2) I feel completely safe — safer than I’d felt in years — with him; and 3) He makes me laugh. We make each other laugh.

You’ll notice that the above is written in present tense. That’s because they have been a constant in our marriage. And I am not exaggerating when I write that we have been through a lot! Over the last 15 years we have been diagnosed with chronic illnesses, we have lost family members to death, we got through the shock of a surprise pregnancy and are so far raising an awesome kid. Together, we have gone through five surgeries (one for him and four for me), numerous diagnoses, and several scary issues.

I love him. I love him. I love him. He is the definition of a good man. And he continues to be as we face more scary possibilities.

This evening I was researching something related to my health when my son ran over to me. He thought I was still playing a game I’d played earlier. I quickly pulled my iPad away from view — I didn’t want him to see what I was researching — and he decided it was an investigation. He commenced sneaking around trying to see the screen. Eventually my husband explained that Mommy didn’t want him to see because I didn’t want him to worry. After that explanation, he continued to engage in whatever game he was playing, but changed his role to be protector over me.

I wonder if he has learned this from his father. Does he see how my husband takes care of me and feel that he should protect me, too? Is it a typical mother-son relationship? I don’t know, but I am all at once filled with gratefulness and regret. Gratefulness that our son is growing up to be a sensitive boy in some ways. And regretful that at age nine, he would feel a need to protect his mother.

Our kid was a surprise. I cannot pretend that I planned how I would mother. The reality is that I had already been diagnosed with Psoriatic Arthritis (aka PsA; an autoimmune disease), and my husband and I decided it would probably be better if we did not have children. But we welcomed our pregnancy fiercely, protectively, and with our whole hearts enmeshed in it.

We have had parenting fails and parenting successes. Days come where this Mama just can’t and we have to improvise. Days have come where I’ve felt well and been able to focus on the kid like I focus on a good book.

Recently my days have been filled with unusual symptoms and diagnoses and an overwhelming fatigue. Not to mention the ongoing question of, “Is it allergies or an infection.” (I never know, especially not having PsA). I certainly did not want to raise a child while combatting illness, but it is our reality.

I hold onto — our whole family does — the hope and the knowledge that things will get better. And so, as I cope with uncertain times, I pray (a lot), I enjoy my kid as much as I possibly can, and I rely on my husband to continue to make me laugh.