The Fear When Sick

I don’t know why I get such anxiety every time I get sick. I wasn’t “sick” when I was diagnosed with cancer initially, so I don’t know why I have this uncontrollable fear every time I get a headache, run a fever, or feel like I can’t breathe. Well, actually I do. It’s because of everything that came after that cancer diagnosis. It was the rounds of chemo that weakened my immune system that made me fear germs and fevers. It was the weakening of my bones from the chemo pill I take daily that makes me fear the constant pain that occasionally becomes brutally horrific might truly be my bones crushing beneath me. It’s the fear of cancer’s return to the brain that makes me fear a headache or to the lungs that makes me fear a tightness in my chest or difficulties breathing. My mind’s first thought is always to the extreme and never that it might just be a cold, my sinuses, stress and tension, the flu, strep, a virus, a bacteria, or any other thing I might pickup from a hundred kids who aren’t the best at washing their hands and covering their mouths when they cough or sneeze.

And then I’m reminded:

Be strong and courageous

Fear not!

Be still and know that I am God.

Have faith.

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5 Years Post Mastectomyq

It’s been five years since my bilateral mastectomy with reconstruction, and I was asked by someone who has followed my blog since that day to write what it’s like today. So here goes my honest review.

Today, my scars don’t hurt. They are easier to look at than they’ve ever been. They have faded a lot. I don’t really notice them that often to be honest.

I’ve had seven breast and reconstructive surgeries. I’m completely healed from all of them. They’ve left me with mostly naturally looking breasts at least for those of you on the outside looking at me. They make clothes look good so I’ve been told. They make me feel more whole and less deformed or incomplete. Less broken. Less damaged.

I’ve had three tattoo sessions to create mostly natural looking 3D nipples. At first, I thought this was silly, but it was probably one of the best decisions I made for my psyche.

Pain? Well, I’d love to tell you I don’t have any, but I promised an honest review. About once every two months or so, I’ll get jolted by phantom nerve pain. It’s as though I’m being shocked as my severed nerves get some wild hair to go searching for their lost mate again. It’s bizarre. The pain comes without any warning and can last from less than thirty seconds to several hours. Thankfully, it’s always gone away. There’s still a stretching tightness across my chest. It doesn’t normally bother me that much but occasionally it does. The tautness has a way of becoming too tight from time to time and will actually pull my rib out causing excruciating pain. Thankfully, I have a chiropractor who has always been able to put me back together again without the need for pain medication.

Frozen implants have to be one of the downfalls of fake boobs. If these babies get cold, it’s like having two blocks of ice stuck to your chest. AND it seems to take forever to get them thawed out and back to body temperature. Quite miserable. Because of this, cold days are usually the only days I wear a bra and that’s just because it works kind of like a coat for my fake breasts.

If I were to go back in time, would I do anything differently? I’m not sure. It’s hard to imagine making a different decision at this point because of the decision I did make. Instead of looking backwards, I try to look at the positives of today and tomorrow.

I’m thankful for modern medicine. I’m glad women have options today that weren’t as readily available to them twenty years ago. I’m so glad my body has healed. I’m thankful for a breast surgeon and a plastic surgeon who worked together to cut as straight and neat as possible. Seeing the scars, the mutilation, after surgery was brutal. I honestly didn’t believe either of them whenever they told me it was going to be okay. Time was needed, but they were right – it is okay. These scars remind me of the war fought to get to where I am. They remind me to cling to God. They remind me how deeply I am loved. They remind me how lucky I am to be alive. These scars tell of a just a moment in my life, not a lifetime.

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When I Am Weak, He is Strong

This past week as I have stumbled through grief, God has reminded me to bring my sadness, my questions, my fears, and my tears to rest at His feet. He’s held me through the beginning of this storm and has reminded me time and again that when I am weak, He is strong. Today, was no different. The verse of the day on my Bible app couldn’t have been more perfect. As I seek God within my grief, I find His strength.

I’m resetting many things in the month of November. I need to sleep sounder and longer and restore my energy. I need to refine what I eat as I’ve allowed myself to fall for the lie of ease and convenience. I’ve taken a step back from the digital world which seems to consume so many of us. I’m working on more of a balance between my jobs and my life. Setting limits and trying to hold myself accountable. I’m searching for some time to strengthen and restore my broken body. It’s just time to give this life fully to God and find strength within Him.

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Stop Asking. Start Doing.

When someone has cancer and you love them, I urge you to take action. Here’s a list of things to do.

1. Show up. I know it’s hard. I know you might be scared and might not know what to say, but just show up. Listen. Sit in silence. But be there.

2. Invite them to events. They might say “no” a lot. Invite them anyway.

3. Change your plans. If you used to go get your nails done together, go to her house and give her a manicure. If you used to go to the sports bar to watch the game with him, go to his house and watch it with him on the couch instead.

4. Drop off gift cards for gas, for groceries, for takeout, for the movies, for bills.

5. Hire a housekeeper or a lawn service or both to help your loved one or friend out for a week, a month, or whatever you can afford to help with.

6. Slip cash in places you know they will find it.

7. Send a funny card.

8. Pay for flights, for hotels, for Uber, for grub hub, and for parking when someone you know must travel for treatment.

9. Call, text, email, send memes, post on their walls – let them know they’ve been thought of today, tomorrow, and the next day, and for forever.

10. Share memories but more importantly – go make new ones.

11. If you believe in the power of prayer, show up, stand beside them, put your hand in theirs or on their shoulder, and pray over them.

12. Stop by with a movie and stay to watch it with them even if they sleep through most of it.

13. Take them to treatment or to an appointment.

14. Donate blood or plasma in their name.

15. Sign up to be a bone marrow donor.

16. Take them for a drive. Go see something. Anything.

17. Help them mark something off their bucket list.

18. Raise money to pay their medical bills.

19. Workout with them every day or at least every other day. That might simply be a walk to the mailbox and back, but it’s always better with someone else.

20. Read to them, play music for them, do something creative together, or play a game.

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Best Ways to Help a Cancer Patient

Here are my Top 5 Ways to Help a Cancer Patient

1. They aren’t contagious. They are still the same person they were before that diagnosis. So please, please, please don’t treat them differently. Invite them to go and do knowing some days they will be able to go and sometimes they won’t. On the days they can’t go and do, stop by and stay a bit. Listen to what they have to say. Watch a show with them. Run an errand for them. Just be there with them. But don’t ignore them and don’t forget them. Having cancer is isolating enough. Please don’t make it any harder than it has to be.

2. Money really is the best gift you can give. I know the cute baskets full of pretty pens, notebooks, lotions, and colorful bows look pretty, but it doesn’t pay the insurmountable bills that basket is going to hold whenever you leave. Having cancer is expensive. It sucks most patients completely dry and leaves them in a horrible financial situation. Sending money can cause a tremendous amount of relief to a cancer patient.

3. Offer to donate your travel points to a cancer patient if that’s a possibility for you. Hotels and flights are often required of many patients but few can afford it.

4. Do you have a rental? An AirBnB or timeshare? Consider donating it to a cancer patient so they have a clean and safe place to stay during treatment or offer it as a relaxing getaway to heal.

5. Send gift cards. Think gas cards, restaurants with a variety of options especially if there are healthy options or soft food options, Uber Eats, Grub Hub, Uber or Lyft, Amazon cards, grocery store cards, and no fee credit gift cards. Often times the things a cancer patient needs are their basic needs met and specific items for their types of treatment you might not even know they need. If you want to buy something for them, reach out to a person who’s been through it and ask them for some specific ideas of things to buy for them. Don’t be surprised by the list. It might looks like this one: thermometer, shower wipes, water bottle with a straw, pill box sorter for AM/PM, wedge pillow, breakfast tray, Tylenol and/or Advil, a fan, hard candies, chapstick, thank you cards and stamps – how many of these things would you have thought to go out and purchase? Believe it or not, these are some basic needs most cancer patients need.

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Rejoice, Again I Say Rejoice!

Today was a big and stressful day. First of all, we had to drive in more bumper to bumper traffic on roads made for covered wagons, Model-T’s, and smart cars not Escalades. Michael has driven thousands of miles in such places, actually in LA itself, so as sick as he is and as limited as his mobility is, he was insistent he was driving today. Probably a good thing too because as he turned into the parking lot (more about that later) the power steering went out. Not exactly the start to our day we wanted or needed.

We got up to the main lobby and found out we were in the wrong building. Walking to the end of the block for a healthy person isn’t that big of a deal, but when you have stage 4 mantel cell lymphoma and you’ve spent the last three days traveling over a thousand miles, you’ve had to climb stairs, drive through traffic, and used all the energy you had left trying to turn a big ol’ machine, that block had to have been like walking five miles for Michael. But he didn’t complain. He took it one step at a time and we made it to the correct building and found the cancer center.

After a few hoops, you can’t go to a doctor’s office and not have to jump through a few hoops, we were finally in a room waiting to meet the doctor. Dr. Epner came in, introduced himself, and began asking many questions. He did the exam. He seemed quite confident he could help Michael out. I felt a rush of relief even as he began writing down all the medications and explaining the process of the treatment plan.

Michael has avoided common medical protocols. Today, that was a huge answer to all of our prayers. Because he had never undergone chemo, radiation, stem cell transplant, etc., he was eligible for this treatment plan. A plan that has been used successfully on 70 other mantle cell lymphoma patients and many other patients with other forms of lymphoma. His success rate is unbelievable. 97% percent of his patients are in remission. He told us there’s no cure for mantel cell lymphoma but he has patients who have been without any signs of disease for over ten years. In the cancer world, that’s as close to being cured as some of us will ever get. We will be forever grateful for ten years or more of NED! Michael agreed to begin treatment as soon as possible. The doctor took that to mean now, which we are even more thankful for.

We would make his appointment downstairs for an ultrasound on Thursday morning before I’d leave him at the cancer center to walk about three blocks to pickup his medication. I knew he didn’t need, nor have the energy, to walk those blocks with me. The pharmacy was kind and customer service was great. Great job CVS of Beverly Hills! I would have to wait for insurance to be verified and for prescriptions to be filled before heading back to the cancer center to pickup Michael.

We would discover the parking garage we parked in we couldn’t receive a discount for using since we parked in the wrong one. Oops! That was costly! Nearly $22 to park there for a couple of hours. Michael, once again, was determined to drive us back. Once again, that was probably the best choice since we drive back in rush hour traffic without power steering. I’m thankful God gave him the strength to do that too!

Tonight we rejoice! Michael has a plan in place that should bring him relief and more comfort than he’s had in several months. The doctor seems confident that the treatment plan will quickly calm his very angry lymphatic system, and he also talked as though Michael should be able to turn this monster of a disease around and be in remission in a few months. A few months! And again we rejoice!

We need some prayers for some specific things.

1. Thursday’s appointment will allow the doctor the ability to make Michael as comfortable as possible going into the weekend as he awaits his official start date for treatment.

2. Insurance quickly approves the treatment plan, including this very expensive drug Michael needs.

3. Michael responds quickly to the initial medications he will start Thursday to start calming the infection in his neck and face.

4. For someone’s schedule to open up so they can come out to California and replace me, so I can return to my responsibilities at home yet Michael still has the kind of care he needs here.

5. That we can find an affordable and nice place to stay after Friday for the duration of his treatment.

6. That a doctor in Amarillo or Dallas is willing to monitor Michael’s treatments after this initial first week, so he can continue this treatment in a more comfortable and affordable way as it will last approximately 6 months and then every 2-3 months after that for five plus years once he’s NED.

7. That the power steering issue is an easy and cheap fix.

8. For Michael’s strength to endure all that’s coming.

9. For safe travel.

10. For complete healing.

Today, I rejoice and again I will rejoice! God reminded me once again that it only takes a little bit of faith for Him to move mountains, so I will have a little more faith until Michael is in remission!

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God Lights the Path Before Us

Sometimes God works in such a way that makes me stand up and notice. Tonight, as I went in search of His wisdom and power, he was eagerly awaiting my cry in the darkness. He would show me in a way that probably means more to me than it will to those reading this blog that He has already gone before us and is lighting the path in front of us.

The verse of the day pops up whenever I open my Bible app. Tonight it was James 1:5 – “The light shines in the darkness, and the darkness has not overcome it.” Before starting chemo my 2nd grade teacher, Miss Perdue, would reach out to me to say, “When the darkness comes, and it will come, hold on to the light.” These were powerful words that would get me through some dark days.

And then the avalanche of my thought process. I’m convinced God had a hand in spinning this all into motion because I would go in search of Chris Tomlin’s song “Whom Shall I Fear”. It was the song I listened to before and often during every chemo treatment. I’ve listened to it hundreds of times since. It’s one of those songs that just speaks to me. That song would lead me to Deuteronomy 31 because I briefly saw how this chapter inspired the words to this song. I start reading and I’m like, “Hey, I know this story.” And then I smile. Oh, God, you got me! Your hand has been in this from before I could probably imagine, and here you send me to this place in your word. We’ve come full circle. Deuteronomy 31:7-8 and Joshua 1:9 – two in the same!

If you walked cancer with me or have heard me speak of God’s walk with me through cancer, then you know how deeply Joshua 1:9 spoke to me. It is my battle cry verse, my go-to verse whenever I feel inadequate. And here I am tonight covered in God’s peace once again knowing beyond a shadow of a doubt that He has gone before us and tomorrow His light will shine before us directing our paths. We have nothing to fear!

Tomorrow, I will take Michael to a cancer center here in Beverly Hills, California to see if he can begin a trial to treat his Stage IV mantel cell lymphoma. And tonight, God sends me on this journey to show me His hand is all over this and to remind me to just have a little bit of faith and to stand back and watch Him move mountains!

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