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Wednesday, November 30, 2016

Oh, Happy Day!

Ringing the bell

I'm done. Today I'm ringing the bell in the infusion room, marking the end of my chemo treatment. My husband, my boys, and my mom will all join me. And then we're celebrating with friends tonight.

I prayed and prayed throughout the long holiday weekend and finally had peace about what to do next. It was not an easy decision and I wanted to be sure that I was not making an emotional decision...or one of fear.

Monday, I got to see the video the photographer had put together from my photo shoot. It's beautiful...but it's like I'm watching a stranger. Who is that woman??  God is gracious though. Through many of you, he pointed out things I don't often see in myself. Beauty. Strength. Joy. Dignity. Courage. It's all His, not mine! He is generous to give me what I don't deserve. Thank you, Lord. Thank you! I can finally say I'm thankful for my cancer. For every blessing, for every challenge, for every lesson, I am truly thankful. Thank you, Lord, for ALL you have given me through this cancer.

When my face went numb for the fourth time, I knew he'd also given me my answer.

I went in for my appointment yesterday with my medical oncologist. I was fully prepared to tell her that I not going to complete chemo. She beat me to it. She was calling it off. She'd already consulted with my integrative oncologist and they both agreed that the I'd already received the most beneficial doses and with the side effects I was experiencing, I needed to be done. I'm glad we're all in agreement about that. The next steps? Not so much.

Tamoxifen is next. It's an estrogen blocker and I'm not interested in it, though I understand my doctor's recommendation.  I'm more concerned about the side effects that'll cause than the benefits it might have. From the National Center for Biotechnology Information: "Tamoxifen increases the chance of cancer of the uterus (womb) in some women taking it. Tamoxifen may cause blockages to form in a vein, lung, or brain. In women, tamoxifen may cause cancer or other problems of the uterus (womb). It also causes liver cancer in rats. In addition, tamoxifen has been reported to cause cataracts and other eye problems." As if that weren't enough, there's also this, "Serious and life-threatening uterine malignancies, stroke, and pulmonary embolism have been associated with tamoxifen use in the risk reduction setting and women at high risk for breast cancer. Some of these adverse events were fatal."
On the other hand: If I take it, my breast cancer might not return...or it might come back anyway. No guarantees. According to my medical oncologist, if my cancer returns it's incurable. She also made it clear that there's no way of knowing if it's gone now other than I show no symptoms of active cancer cells. She has offered both blood tests and scans to check but admits that unless it's growing the tests won't show much. The reality is that my cancer has been gone since June when I had surgery to remove it. Chemo was a preventative measure to reduce the risk of recurrence. I didn't have to do chemo. I chose to do it. I also never felt sick til I started chemo. How backward is that?

So I'm choosing to not take tamoxifen. I've discussed the pros and cons with my husband and sons and they support my decision, even if my doctors don't. I know not everyone will and a few have already expressed their thoughts on it. That's okay. It's not their life or their choice. It's mine. And it belongs to the Lord.

It's not that I plan to do nothing. Far from it. I am just choosing to take the less traveled route. I've got Jesus as my tour guide. How can it go wrong?

I will continue to ask for your prayers and support, whatever that may look like to you. My donation account will remain open since my treatment will be ongoing, though I do not plan to keep asking for donations. I know that God will continue to provide for us according to our needs.

Wednesday, November 23, 2016

Chemo Day, Round 14

Chemo Day, ROUND 14 - in pictures -

[Update below] 

WAKE UP!
It's chemo day!
Fasting but not starving 
I start my day with lemon water 
Then I make my bulletproof coffee 
Mmmm
Time for devotions
Put my face on
My GAME face!
Appropriate footwear 
Got my chemo buddy!
That's some serious walking!


I wish I could say that's how my day ended. Those of you on Facebook got a prayer request and a short update. There's more to the story so I might as well tell it here. 

The left side of my face went numb the last 5 minutes of my chemo infusion this morning. The nurses checked a few things (hand squeezes, pupils, smile, etc) and called the PA I saw yesterday. I was told that the PA consulted with my medical oncologist and they decided I was probably fine and to send me home. I was also told that my oncologist said that this might be my last chemo infusion. With instructions to call the on-call oncologist if my symptoms worsened (since we're going into a holiday weekend). 

My chemo buddy drove me to my appointment for my hyperbaric oxygen treatment. I was uneasy with the decision to leave without a doctor checking me out, but I'd have to be okay with what I was told and just pray. 

By the time I got there, my head was aching and I was having trouble getting words out. I could think of what I wanted to say but the words were getting "stuck". I texted my integrative oncologist for an update and advice. She called me immediately and told me not to get in the oxygen chamber and to go to the ER. She then called my medical oncologist only to find out that she was at home on vacation. She had never been contacted and knew nothing of the situation, nor did she say to send me home or that it might be my last infusion. The nurse had lied to me. Both of my oncologists wanted me evaluated and monitored in the ER as soon as possible. 

My son came to pick me up and take me to the emergency room. They immediately flagged me as a possible stroke victim. I spent the next 45 minutes listening to them announce that a physician was needed, but none were available. Apparently there's an urgent window of time for evaluation when a stroke is suspected. This brought on a bit of anxiety. Thankfully my mom and Charlie were able to be there with me again. 

Finally, the doctor came. More labs, more CT scans, another MRI. I lost it in the MRI. I thought I was going to throw up on myself in the tiny tube. I started to cry but knew I had to stay still or they would have to start over. I prayed that I would fall asleep. God is merciful and never left my side. 

The ER doctor thinks I'm experiencing cranial neuropathy. This is in addition to the unofficial diagnosis of suspected neuropathy in my sinuses. This is not the typical presentation of neuropathy, but neuropathy is common and sometimes permanent with the chemo drug I'm on. That's why all the concern. 

This is what chemo is doing to my body!! I'm NOT okay with it AT ALL. 

My IO will be checking in on me throughout the weekend and I have an appt early next week. Meanwhile, I have much praying to do. I'm not sure it's wise for me to continue with chemo. I only have one left since I refused to make up the one I missed. I'm not sure even one more with a further reduced dose is a good idea. I'm also praying about the hormone therapy protocol recommended. These are huge decisions and my head already hurts like hell. 

I have much to be thankful for and plenty to pray about, so I'm going to enjoy the next few days with my family and try not to make an emotional decision. Your prayers are appreciated ❤

Happy Thanksgiving from my family to yours! 

Monday, November 21, 2016

Thankful [Nov 18, 19, 20, 21]

I will be done with chemo in 9 more days...
Only 2 rounds to go!

58. I'm THANKFUL for a lovely brunch with some of my homeschool mama friends. Each time I think I'm not going to go ends up being just what I needed and so glad that I went.

59. I'm THANKFUL for my first class in my studio!

60. I'm THANKFUL for my husband and sons who work hard to help me, both at home and in the studio. I couldn't do any of this without them ❤

61. I'm THANKFUL that my usual chemo crash didn't happen on Friday this week but waited till Saturday night when I was home.

62. I'm THANKFUL that Sunday truly was a day of rest.

63. I'm THANKFUL for the commissioned painting project I had to work on. I love how it turned out.

64. I'm THANKFUL for spending the evening with our adopted family. It's a fuzzy line when considering who adopted whom.

65.  I'm THANKFUL for a Monday morning surprise coffee delivery ☕

66. I'm THANKFUL I felt well enough to resume our ballroom dancing lessons tonight. I've missed those regular date nights with my husband. They make me feel normal.

67. I'm THANKFUL for the friends we ran into in dance class. I rarely see any of them any more so it was a treat to see them all ❤

Thursday, November 17, 2016

Thankful [Nov 16, 17]

49. I'm THANKFUL that today we got news that my health insurance has been approved and I will NOT lose coverage. Thank you all for your prayers!!

50. I'm THANKFUL that my husband loves his job. And it shows 😆

51. I'm THANKFUL that I was able to take my son to the dermatologist yesterday, even though he's not improving. Please keep praying. The doctor upped his dose of steroids for tomorrow morning and will be calling later in the day to see how he's doing. At least the rash is not spreading.

52. I'm THANKFUL I was able to take my older son to the doctor today. That it was all good news and another referral.

53. I'm THANKFUL that my studio is almost ready for Saturday's class. I'm so excited!

54. I'm THANKFUL for surprises, like my mom folding our laundry while she stayed with my son. I was afraid to leave him home alone with that rash while I went to chemo. And then she did some mama-shopping for me and picked up the pants my kids needed. I hate shopping. She loves it. Win win.

55. I'm THANKFUL for HAIR. I have almost lost all my eyebrows and eyelashes but I already have stubble pushing through. And my head...is covered in hair. WHITE hair. So weird.

56. I'm THANKFUL for the one donation that came in today. And the one party that was booked. I know God has us covered even if I'm not sure how.

Do you see the black dots in the outer corner of my eye? New lashes!!
My fuzzy head. And one remaining eyelash. 
HAIR!!
Protection in the doctor's office. Waiting rooms are scary places for chemo patients. 

Chemo update

It's now 5 am as I write this. I've been awake since 2:45. Total sleep? About 3.5 hours. Just less than my post chemo norm.

Yesterday I resumed chemo. Round 13. I have 2 more to go and will not be making up the one I missed last week. I discussed this with my oncologist on Tuesday. I told her that for several months I have had November 30th on my calendar as my last round of chemo and I *needed* that to stay there. I also told her that I firmly believe that God can heal me whether I complete 16 rounds or 6...or none at all. Whether he does or not is up to him and I trust his plan. (Hello! Healed or heaven? Both sound good to me!) She agreed to just continue as planned. I will be done with chemo in 13 days. THANKFUL#44

Round 13 went well. There was another slight reduction to my dose. I started at 160ml of taxol. The first reduction brought it down 25% to 120ml. Yesterday's was 110ml. Still monitoring my headaches and hoping this helps. They eased with the break last week but they are back now along with the fuzzy brain. I was struggling with words yesterday. It's so frustrating. Chemo is a beast!

I'm working hard on getting my art studio ready for my first class this weekend. Trusting the Lord for the energy and that he will bring so he wants to come. I only need to show up and be ready and willing to share the gifts he has given.

The break with no chemo last week allowed me to enjoy visiting with 2 of my childhood girlfriends without my chemo crash. THANKFUL#45 Then my son broke out with a terrible rash all over his face and arms. Poor guy can't see, his eyes are swollen shot shut, but we're hopeful the steroids he's on will help him quickly. I'm glad I was able to take care of him ❤ THANKFUL#46

I'm sure you're all tired of hearing our needs but I need to share it in hopes someone feels that tug in their heart to help. So many of them are financial burdens we can't get around while fighting this beast. So many cancer fighters end up bankrupt or heavily in debt because of all the costs insurance doesn't cover. Nevermind the normal day to day expenses to cover despite a drop in your income while you're in treatment and recovery:

We had to put new tires on my car recently when they started slipping in the rain. Now my son needs a new bed. Anyone have a futon in good condition they want to get rid of?

All 3 of my guys have been rushed to the doctor or emergency room in the last month. All 3 are feeling the physical effects of stress and anxiety. This means making some changes and learning to say yes more often to enjoyable activities with friends and family, and no to activities that take more time and energy than we truly have to offer right now. I'm praying for 2017 to be a year of good health for my whole family!

My medical funds have dropped low again with the extra visit to my integrative oncologist last week. I'll see her again in December after I finish chemo. I'm concerned about the 10+ years of hormone blockers the other doctors want me on following chemo. This might mean finding another specialist experienced with supporting my immune system and overall health, especially if I'm to keep any rogue cancer cells from waking up again. This isn't over yet.

How to help right now:
PRAYER SUPPORT - That need will always be there but especially right now as our family seems to be under constant attack. 
FINANCIAL SUPPORT comes in a variety of ways - Come check out my business, take a class, book a private party, or buy a painting. If you'd rather give directly, cash and gift card donations are great and give us flexibility to apply the funds where their needed most. For convenience, we've set up a fee-free account where even the smallest donations count.
MEALS & HOUSEWORK - We are actually doing pretty well in these areas at the moment. THANKFUL#47 We've had a few friends ask if they could have us over for dinner instead of bringing one to us. YES! We love that idea. So long as I'm feeling well and no one is sick. We miss the fellowship with other families. You can still do that through the meal website or giving us a call. Oh, and I finally qualified for much-needed housekeeping help through an organization I learned about through the American Cancer Society. I'll get a couple free cleanings while I'm in treatment. Yay for a clean house!! THANKFUL#48

An hour later, and it's after 6 am. Gonna be a long day....

Tuesday, November 15, 2016

Thankful [Nov 11, 12, 13, 14, 15]

Counting my blessings even as wave after wave crashes over me trying to sink me and bring me down. I will not drowned. Not today.

#32 I saw my surgeon on Friday to investigate the fluid found on my ct scan. He drained it *ew!* with abig ol' needle *ouch!* and it was not cancerous. Thank you, Lord💙

#33 I got to see the first photo from my photo shoot and loved it! I can't wait to see the rest!! 😆

#34 There are no words to express how thankful I am to know we'll meet again with our friend who was called home last week. It's always hard to say goodbye but there is comfort and raw joy in knowing he's reunited with his bride and in the presence of the Lord.

#35 I'm thankful for my girlfriends that drove up to see me, support me, laugh with me, and enjoy a few days without a constant focus on cancer. 26 and 29 years of friendship I wouldn't trade for the world 💜 Oh, and forget about twinning. We tripletted 😉

#36 I am thankful for heroes of the faith, like Joni Eareckson Tada. I was absolutely blessed to meet her this weekend and hear her speak on suffering. (I plan to share more about that later.)

#37 I'm thankful that when my son woke up with a rash covering his face and arms that I had friends willing to step in and help me get him to the doctor. That's the first time I've been on speakerphone from the parking lot while answering the doctor's questions about my son. Thank God for today's technology.

#38 I'm thankful for the beauty of southern Oregon and that I get to call this land "home". My girlfriends and I took the scenic route around the valley. The rain only made their "Oregon experience" that much more authentic. 😂

#39 I'm thankful that upon seeing my oncologist this morning, I learned that she's approving *my* plan for completing chemo on time, no extension to make up for missing last week's. 3 more rounds to go!!

#40 I'm also thankful that my oncologist was concerned about my son's rash and called in a favor from a colleague in dermatology. With protecting my impaired immune system in mind, he agreed to see my son. (Unfortunately, my son's doctor took forever to issue the referral and we have to wait another day.)

#41 I'm thankful for friends that *read between the lines* and recognize the stress we were under today trying to take care of my son, protect me from whatever was making him breakout, and preparing for tomorrow's chemo infusion. Delivering a meal to feed my guys means one less thing we had to think about at the moment.

#42 I'm thankful for my daddy calling this evening. I'm so glad we put him on speakerphone for a bit so we all got to talk to him 💜

#43 I'm most thankful that this day is finally over!! God bless and good night😴