Unexpected Bump in the Road

When are bug bites not truly bug bites? When does the change in how food tastes not have anything to do with the food? When does having a bit of trouble breathing on my walk have nothing to do with my conditioning? The answer to all these questions lies in a small pill I've been taking the past week.

If you can read the small print in this picture, you see that one of the rare side effects of Arimidex is hives and itchiness. On Tuesday, I felt what seemed at the time a mosquito bite as I walked. It was on my stomach, just below the waistband of my pants, and very difficult to get to while bundled up against the rain and chill. When I got home, I put cortisone on what turned out to be 4 small bumps.  My only thought at the time was how weird to get mosquito bites this time of year and in that area.

By yesterday, these bumps had multiplied, spreading to my thigh and one on the top of my foot. I remember having a reaction to amoxicillin, and the rash was all over. This didn't seem like a bad reaction, if it even was such a thing, but I perused the medical information included with the prescription and online to see if hives might be a possible side effect. Last night, I told Walt that it is likely that I am having a mild allergic reaction to the drug, especially as I saw no change to the bumps after several days. I looked at pictures of hives online and realized my bumps looked more like those than mosquito bites, after all.

At dinner last night, I noticed that all the food tasted bland, which helped me not enjoy the food as i usually would. I still didn't connect the dots that my tongue might be numb because of the Arimidex.

Intending to call my doctor this morning but still unsure if this was a true allergic reaction, I took my pill as scheduled last night. This morning I didn't have any achiness when I woke up. To tell you the truth, that has been the side effect I was zeroing in on, making sure I exercised and stretched so I could prevent or alleviate any stiffness. After seeing the kids off to school and having my daily time reading the Bible and praying, I set out with Sugar for a walk. I had climbed a hill outside our neighborhood and felt a tightness in my throat. At that moment I started thinking that this really was a reaction,  and I hope it isn't serious. Then I remembered that I hadn't taken a Claritin this morning. Since it worked so well at eliminating the sharp back pains I experienced my first days of the medicine, I faithfully took it every morning. In hindsight, I think taking that antihistamine daily kept my allergic reactions to a minimum, which is why I had a hard time believing they were real.

I had only been walking about 10 minutes at this point, and knowing I probably wouldn't get out another time today, and since it really didn't seem all that bad... (yes, I can rationalize with the best of them), I continued on my walk, electing to take the shorter route, just in case, but still going further away from home. At one point, with the rain soaking my pants, feeling my throat tightening a bit more that I slowed my pace, I wondered how good of an idea this actually was.  Fortunately, I made it home safely, but I have to say, not without some concern toward the end.

As soon as I got home, I took a Claritin and almost immediately felt the swelling and numbness lessen. I called my doctor and spoke with the nurse, who said she would relay the information and get back to me as soon as she was able to connect with Dr. Kohn. I mentioned that I knew I should discontinue Arimidex, but would I need a time for the medicine to clear my body before starting back on Tamoxifen?  I noticed when I spoke that my tongue felt a bit clumsy and my voice sounded like I had a sore throat.

While waiting for the return call from the doctor, I sipped water and felt my throat loosen up even more. I don't think Ben noticed anything different as I read and discussed history with him. When the nurse called, she said Dr. Kohn agreed that I should stop Arimidex, that I should take Claritin or Benadryl (which I told the nurse I had and it was helping), that I could go back on Tamoxifen tonight without a waiting period, and that we would discuss trying one of the other aromatase inhibitors at my next appointment. I told her that I thought that was a good plan and hung up.

From the start, I was hopeful that I was going to be able to handle this medicine, expecting to gain a bit of advantage in this fight against the cancer coming back. I think that desire for it to work prevented me from seeing how it was truly affecting me. I am thankful that the reaction was minor. I'm glad to be back on tamoxifen, something I know. Every new entry into the world of prescription drugs is tainted with lots of uncertainties and cautions. For now, I'm thankful that I have something that will work (tamoxifen), and my doctor and I can figure out in February if we should try something different.

Today, I'm still recovering from this unexpected bump in the road. My body is a bit shaky, my mouth is still numb but breathing is fine. My skin and eyes are still itchy, (connecting that final dot that it wasn't my contacts that was causing my eyes to itch so badly). I foresee these all returning to normal soon. In the midst of all this, I'm thankful, at peace, knowing God is in control of all this.

Job 11:18 

You will be secure, because there is hope;

you will look about you and take your rest in safety.

Yes, what he said.

Day 3 of New Meds

Thursday night I took the new anti-estrogen pill. I woke  up Friday feeling a bit achy, almost like I was coming down with the flu. I went for a walk, trying to work out the slight achiness in my back. Exercise helped my back, but the slight nausea remained. Since it wasn't a school day, I decided to spend some down time reading a novel. By the afternoon, I decided that too much laying around wasn't helping, so I started on a project for our bedroom. We have lots of mismatched picture frames, so I decided to paint them all white and work on organizing a wall collage. While they were drying, Becca and I went shopping. Being out helped take my mind off of how I was feeling, but I grew tired quickly. Friday night I went to bed early.

Saturday, I woke up feeling better. The achiness was there in my back, but I tried taking a Claritin and it seems to help. When I was getting shots during chemo to boost my white blood count, I found Claritin helped with the bone pain. I read on breastcancer.org that sometimes Claritin helps with the bone pain of the anti-hormonals. I am hopeful that the problems I'm having are temporary, as my body adjusts to the new medicine. Sometimes symptoms can increase over time, so I'm still figuring this all out. I want to give this a good shot, hoping that I don't have to make the hard choice of deciding between whether the way I feel is tolerable and worth the extra percentage points against recurrence...or if I should switch to something else. 

After putting on a second coat of paint on the frames and doing a bit of cleaning, we left to watch Nathan's soccer game. 

It was rainy and cold. It looks like fall has settled into our area at last. I huddled under an umbrella, a bit achy, but thankful that I could watch this game. Nathan played very well and his team won. I remembered the days during the fall of 2012 when I was too sick after chemo to make it out to soccer games. My bit of nausea was a piece of cake compared to that. 

I'm hopeful that my symptoms are improving. Today, Sunday, I felt less nausea and only occasional sharp pains in my back. I planned to go to Becca's soccer game this afternoon, but the game was cancelled. You probably all heard of the school shooting in Marysville, and Becca's team was playing against girls from that school. While at first they wanted to play to get their minds off of the terrible circumstances, they changed their minds when a memorial service was being arranged at the same time as the game. So instead of watching Becca's game, I went for a long walk which helped eliminate any lingering feelings of sickness. 

My plan for now is to make sure I get my exercise in to help with the muscle soreness (as well as numerous other health benefits that exercise offers), try to eat well, and monitor the effects for a few weeks. Hopefully, I won't have much to say as my body adjusts. If not, I know that God has another plan in this.

Anastrozole

I've had this prescription for over a week. Filled it a few days ago. Plan on taking my first dose tonight. Anastrozole is the generic version of Arimidex, which is my new hormone therapy prescription. Even though the list of potential side effects seems extensive, it is actually fewer than the ones for Tamoxifen. I remember feeling a bit of anxiety before taking Tamoxifen for the first time. God's grace allowed my body to tolerate it with little negative effects. The slight chance of a new cancer or a deadly blood clot inspires me to try the new brand of anti-estrogen pills that I am now qualified to take. While the serious side effects are gone, quality of life side effects are possible. Some women have no problems at all, but others have terrible stiffness, aches and pains,  or various other "minor" effects. I hope I'll be able to tolerate this medicine well, since it gives me a boost of a few percentage points against recurrence, If this particular medicine is not tolerated, I have two others in this category to try. If not, I'll go back to Tamoxifen, and know that this is God's will. So, tonight, day one of about 3 more years? (By the time I've reached my 5 year mark, studies may indicate benefits of more years of popping pills, so I hold any timelines loosely.)

When I told Walt about this medication, he said he wished I didn't have to take it. I misread his heart and thought he needed convincing of the benefits. Instead, he just was responding empathetically to having to take a drug that causes my body to age prematurely. When I realized he wasn't questioning the wisdom of taking it, mostly still grieving the effects of cancer in my life, I understood his words. He wasn't saying, don't take it, but I'm sorry you have to endure this. I try not to go down the road of  "wish I didn't have to" or "if only..." I put energy into staying in the present, appreciating that right now, all the treatment has worked at keeping this terrible beast at bay. As much as I don't like the potential effects of taking any medication, I am thankful that I have this tool to use. So, as my computer runs out of battery, I take this cue to end this post and go take my pill. Praying for the best.

Not Going to Torture You

As my doctor eased open the door in the examining room Monday morning, a big smile on her face, she offered, "I don't have anything to torture you with today." Because this appointment was spaced longer than the usual 48 hours because it took a week to get the bone density results, I was able to access the blood test results already. As you probably recall, one of my tumor markers stubbornly remained elevated since last November. The elevated marker won me return visits to draw more blood every two months. I had one pause where the tumor marker went back to normal in January, but since April, the marker slowly rose every two months. Dr. Kohn then ordered a trip for a colonoscopy which yielded the helpful advice to add powdered fiber to my diet. My first blood draw after that was normal, and I was hopeful it would remain the same. Crazy turns happen with cancer, so I still had to press into God's peace before I accessed the results online on Saturday morning. When I scrolled down to the CEA marker, I wanted to shout. 2.2!! I darted into the family room where Walt was watching football and shared the good news with him. What a great start to the weekend!

Dr. Kohn had no idea that I already knew the results of my blood test, but to see an oncologist smile is a wonderful thing. I'm sure her other appointments on that day weren't all so nice and easy. I know tears and anguish are as common in the examining room as smiles and chit-chat. Every time I go into the oncology clinic, I'm amazed at the levity, the smiles, the welcoming comments and familiarity present. I think these are developed because of repeat and frequent visits. Most patients I see have overcome the horror of their initial diagnosis or recurrence and are living the life they are now dealt. One man sheepishly returns for keys he left behind. The receptionist is thrilled that they have been returned to the rightful owner. I overhear pleasant conversations about a funny answering machine message or activities that happened over the weekend. Most of the patients are veterans. New patients stick out with their anxiety and uncertainty written all over their faces. Veterans grab the clipboard offered at checkin, scan the columns to quickly note any new symptoms, and pop back up with the work completed. Newbies take time to read every line, every page. It's still hard to believe I am one of the veterans, comfortable in a place I never thought I'd be, but walking with God in the story He is writing.

Dr. Kohn quickly went over all the results, including my bone density. She was a bit surprised that it was so strong because of how "petite"  I am. I chuckled, not ever considering myself petite. I'm sure my bone strength has its roots in the dairy of Wisconsin and continues through the weight-bearing exercises I keep a priority in my schedule. I don't deny the good family genes, too. We come from sturdy folk.

The one discussion we had was changing my anti-hormonal from tamoxifen to an aromatase inhibitor. In postmenopausal women who are on a aromatase inhibitor, the percentage of non-recurrence goes up a couple of percentage points over tamoxifen.  Dr. Kohn said that isn't significant, so some choose to stick with the pill they already know. The other side benefit of switching, however, is tamoxifen has a very small chance of causing uterine cancer or developing a blood clot, while the AI drugs do not pose this risk at all.  That was enough for me to be persuaded to give it a try. Dr. Kohn said I can always go back to Tamoxifen, since I know the side effects are minimal for me. Some people have no side effects on the AI, but others have experienced achiness in their joints or an over all sick feeling.  Sometimes it'll take a few weeks to feel better, and other times the achiness remains. Every one responds differently. I have the prescription in my purse. I wanted a week of feeling good, basking in good test results, knowing that the tamoxifen I take nightly was good enough for now. I think tomorrow (Friday), I'll venture to the pharmacy and pick up the bottle of pills. If this particular type doesn't work for me, I can try two others. If all of them produce an achiness that takes away from the quality of my life, than I'll go back to tamoxifen. I'm praying that it'll be just another pill I take every night.

By the way, this afternoon before I went for my walk, I put my hair in a ponytail for the first time since 2012, when I had my hair cut short before chemo.

Here is what it looked like in 2012

 Here is a picture of my tiny ponytail today.

Moderately Elevated

Finally, I decided to be proactive and call my endocrinologist to see what I could find out about the thyroid uptake scan. The receptionist mentioned that the doctor just mailed a letter to me today with the results. Would I like her to read what it says over the phone? Yes, you better believe I do!

Basically, she read that my thyroid levels were moderately elevated. The right-side nodule, the one that grew, is unlikely to shrink with medicine since it absorbed very little of the iodine. His plan is for me to check back in with him in 6 months, unless it grows so large that it interferes with swallowing or speaking. She said I should be receiving the actual letter tomorrow or Saturday. I thanked her profusely and hung up. No biopsy. No surgery. No new medication. My day got so much brighter in those moments on the phone.

God has been so faithful. Even before the call, I grabbed onto the peace I knew He'd willingly give to me. Tests, as  my kids will agree, are hard, yet they also bring me closer to God as I lean into His word and prayer. So in that respect, they are good.

After my long post the other day where I wrote about letting go of things, I took out my Jesus Calling devotional and read this: "In order to hear my voice, you must release all your worries into My care. Entrust to Me everything that concerns you...Let Me free you from fear that is hiding deep inside you..."

Perfect timing. Perfect words. Perfect encouragement.  I've gone through this devotional twice, and even though currently I don't read it every day, from time to time I'll grab it and read what the day's devotional is. Most times, God uses Young's words to speak directly to my soul.

Sometimes it causes me to wince because it hits too close to home. Like today's: "You have been on a long, uphill journey... Though you have faltered at times, you  have not let go of My hand. I am pleased with your desire to stay lose to Me. There is one thing, however, that displeases Me: your tendency to complain..."

I wish I could say, nope, that doesn't apply to me. Unfortunately, it is too true. Instead of complaining to others (usually it's not about my health but other things--but still complaints), I need to shut that door against the deadly sins of self-pity and rage. Instead of grumbling, I need to turn to God and talk it out. I want His thoughts in my mind and His song in my heart.

For today, the conversation is easy and sweet. I'm so thankful for the good news, for God's protection, for His presence during this journey.

Jeremiah 31:25

For I will satisfy the weary soul, and every languishing soul I will replenish.”

Good News, Crazy Schedules, and Letting Go

Yesterday was a busy day of testing. After an hour commute to the hospital, I arrived about 8:15 for my blood draw. The list of items to be tested was a couple of pages long, ranging from the normal white and red blood counts to vitamin D, fasting cholesterol and glucose. Of course, tucked in the middle are tumor markers, which I am hoping stay in the normal range. After the needle prick and vials of blood left safely behind, I went to the other side of the hospital for my bone density screen and mammogram, which both happen to be in the Breast Center.

After filling out paperwork (much of it already completed because of computerized records), I was escorted back for my density scan. The scan was one of the easiest procedures I've ever had done, simply lying with my legs bent and then straight and feet turned in as the  dual-energy x-ray absorptiometry(DXA) scanned my bones. Simple, fast, and easy. 

Once that was finished, I went back out to the same waiting room until I was called for my mammogram. Donning the warm robe, I tried not to let emotions or worries overcome my thoughts. I prayed for God's peace, that He would go before me and be my help. As I flipped through a magazine, I wondered why I wasn't anxious. Oops, I prayed for God's peace. It's funny how often God gives me what I pray for, and I still question.

When the mammogram technician called my name, I realized that I didn't recognize her. I've been here so often, I thought I knew everyone who worked here. She was very thorough and kind, letting me know she would do her best to get excellent pictures the first time. She understood that I would still be sore on my surgical side, but that she would try to be as quick as possible. Because this was a diagnostic mammogram (all of mine from here on will probably be categorized likewise), she had to take several shots on the 3-D machine, then we'd move to another room for a few more shots on a different 3-D machine on only my left side. As we were finishing up the first round of pictures, she offered sweet words of encouragement, letting me know that she knew this was hard for me and that I was very brave. Of course, her kindness opened up the floodgates, and as I tried to hold my breath while compressed in the machine, I felt tears trickle down my cheek. 

We then had a bit of a break as she cleaned the machine, and she pretended not noticing how much I was wiping my cheeks. Moving into the second room, she asked me about my kids. Good, a safe topic. Unfortunately, we got to talking about high school and how I was questioning the classes we placed Becca into, and that it's been a tough month so far, and of course, you guessed it, I struggled to fight back tears again. She mentioned that she also has a tenth grader, a son, and it's just a hard year. No matter what classes, it was going to be tough for her. The technician remembered high school being hard, but watching her child go through it seems harder. Yes, that's exactly what I have been feeling. I once heard parenthood described as deciding forever to have your heart walking outside your body. Up to this point I homeschooled all my kids, so this is the first time my hearts are walking without me as they journey through school. 

Back to the mammogram, we finished up these last pictures fairly easily. I went back to the waiting room for the doctor to review the films. I also was scheduled for an ultrasound because Dr. Kohn wanted to check on some lumpiness on my right side, which she felt confidently was either a cyst or some fibrous tissue. As I waited, I texted my friends who all said they were praying. The waiting room was fairly empty, very little comings and goings. The magazines didn't hold my attention, but I wasn't nervous, either. I knew that the door would open up soon, and I would find out what the rest of my morning would include.

The tech called me back, escorted me to a small alcove to give me the news. I didn't even try to read her expression. She told me the doctor looked at all the pictures and said everything looked benign. I didn't have to come back for a year. I didn't question that, as I usually come back every six months. I rely on Dr. Kohn to let me know when I need to come back...and then I heard her say that the doctor said I wouldn't need an ultrasound. Nothing looked suspicious. I looked at her again. You mean I'm done? Yes, she nodded, you are all finished. Everything is benign. She said she was a hugger and gave me a big hug, as I let the tears flow again. Good thing the waiting room was empty as I didn't want anyone to think I got bad news. Before changing back into my clothes, I sat in the dressing room a few minutes, letting the tears flow. I know this is just one piece of my health, but that,at that moment, it was a tremendous relief to get good news. I even was sent home earlier than expected.

 I return next Monday to get the results of my bone density scan and blood test. I'm still waiting on the results of my thyroid scan. Usually before a test or waiting on results, I don't sleep well. My family will admit to a bit of grouchiness on my part, too. While I have all this medical stuff going on, my head is also overloaded with all the schedules and pieces I'm trying to keep track of, most of which I need to let go.  Today we drove up to the school early so we could be near the front of the line in order to pick up Becca and Nathan and make it to the kids' dentist appointments. The timing worked out perfectly, except, I got the date wrong. When I made this appointment,  the dental secretary and I went back and forth, ... we could have Becca come back for her ortho another time...what about this date? No,we need to have a later time..   When it was done, I thought I knew what we agreed upon, but my calendar had different information than hers did. Frankly, I was so focused on surviving September along with my own medical appointments and concerns, that the dental appointments were low on my priority list. So on Sunday when I saw it listed for today, I planned out how we were going to get there on time. I remembered receiving a postcard of the appointments (didn't verify the date, but assumed it was the same one I  had), didn't remember getting a reminder  phone call, but maybe I forgot about that. I thought about calling today while we were at home, but the day flew by and we needed to go up to the school so we could be near the front or we would make it to Mill Creek in time. Ben remembered all the things he needed to bring in the car to finish, but I felt I needed to remind him. I could have used that time to call the dentist to check on whether we needed to be there today in the first place.  It's not the first mess up I've had this fall, and unless I let go of things, it's  not going to be the last. 

Life has been very crazy, but I can't let it take over as it's been. I need to let go of things the kids are facing and entrust them to make the right decisions, to put in the hard work, to be accountable. I need to not worry about things that I can't change, like classes we chose last spring, my health, or the results of a test. I need to allow God to work through all things for His good. I need to remember this: 

8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deut 8:31. 

Day 1 of Scan

This morning, after sending off the older two to school and making sure Ben knew what he was supposed to do at home, I drove down to the hospital for the first part of my scan, checked in, flipped through a magazine, and followed the technician through the double doors. The last time I was here, for my MRI, I turned right and walked a long hallway. Today we made a left and immediately I recognized the nuclear medicine room from when I had my lumpectomy surgery. The tech read my chart and saw I had lymph nodes removed in 2012. I mentioned that I had breast cancer, and she sympathized with my now thyroid problem. I appreciated her kindness, but I didn't want to go there. If I let myself, I could easily slip into a puddle of "poor-me's" and "life's unfairs." It's better if I stick to the moment, to lean into God's grace, and trust in His goodness. As I was mentioning this test to people, I was unsure what results I am hoping for. Do I want it to be "hot" and have to figure out how to treat hyperthyroidism? Do I want it to be normal or "cold" and then it'll need to be biopsied? If the pathology report doesn't indicate cancer, will we know for sure we were able to access enough cells to tell? Would it be safer/wiser to have the nodule and that part of my thyroid removed? Would I then have to be on thyroid medication? Is there a chance it can just be "normal," even though the nodules are growing? So many questions, no clear cut answer. All I can do is pray for God's best plan through this.

In my morning trip, all I needed to do is swallow a pill with the iodine. Then I went home to return for a 4 pm scan. At 4:30 they finally called me back. (Typical late-in-the-day appointment.) For the uptake portion of this procedure, all I had to do is rest my thigh against a machine called a probe, which gave a reading of the iodine level. Then I pressed my neck against it, so it could read what my thyroid was doing. After that, I sat in a chair, and waited. Waited. Waited. Then the technician came back and said the scanning machine was stuck and they were hoping to be able to fix it. Would I like to get a coffee or snack while they work on it? I took the coupon they gave me and headed to the coffee shop down the hall and got a chai tea latte. Finally, one of the techs led me back, and I lay on a table, with a round scanning machine encircling my head. The faceplate was lowered inches from my face, as I extended my neck. It wasn't too uncomfortable (much easier than a MRI), but someone who was claustrophobic would have a hard time with it. It took about 30 minutes to take the pictures, and I spent the time praying and thinking on scripture. Finally it was over, and I was released into the rainy rush-hour commute, a few hours later than expected.

Tomorrow, I get to go back at 10 a.m., but just for the uptake portion of the procedure. Once I am called back, it will only take about 5 minutes. Then I make the long trip back home and pray for good news. On top of this thyroid stuff, next Monday I have my fasting blood test, bone scan and mammogram. The following Monday I have my 4-month followup with my oncologist. Not sure how I'm going to manage more appointments, but I'll focus on one day at a time.

Thyroid Uptake Scan Scheduled (Finally)

After waiting on a fax to reach the right department (who uses faxes anymore-besides my endocrinologist's office?), I finally scheduled my scan for the thyroid. Because I ate fish last night, I needed to wait a week before I could have the procedure. So on Monday, September 29th, I will arrive at 9:45 am at the hospital for a scan, then come back again at 4pm for another one. Then on the 30th, I am required to come back in at 10 for a third scan. The scheduler mentioned it would take about an hour on the first day (not sure if that is both times I go in or combined) and about 5 minutes for the second day. That's a lot of driving for such a short time. It reminds me of my daily jaunts for radiation back in the fall of 2012.

Hopefully, after all this driving and time away from my normal schedule, the scan will reveal exactly what our next step is for my thyroid. Prayers for a benign, easy to manage condition would be appreciated. No matter what, I know if God has brought me to this, He'll see me through it.

Another Test

For one blessed day, I was normal. Blood tests all in the correct ranges. No lingering pain anywhere, not even a screening in the near horizon to capture my concerns. Then I went so casually into my endocrinologist's office. He asked me how I thought things were with my thyroid. I mentioned about the elevated CEA and having a blood test for TSH in July which was normal. Okay, we'll try to find the results on that, he says. I told him it was 1.01 if that helps. It does, he answers, although I'm sure he prefers the actual lab results to some over-50 patient's ability to recall the precise number. (Note to self: next time, ask my oncologist's office to forward any blood test results directly to endocrinologist.) I mentioned to him that my thyroid felt larger. He asked if I was having heart palpitations or shortness of breath. Nope. He checked how my eyes tracked his flashlight. Then he had me lay down with my neck bent forward so he could ultrasound my thyroid. I think I have one of the most sensitive necks around, so this is no easy feat. Every time he pressed the wand into my neck, I had to force my mind out of the moment, breathing evenly, trying to think of something, anything rather than than the panic I naturally felt when my neck was being squeezed. (I have a hard time with turtlenecks.) The wand lingered on the left side of my neck, the doctor taking picture after picture. When I was allowed to sit up and wipe the goop from my neck, he said that one of my nodules is definitely bigger. And it has a lot of blood flow.  It seems to be a bit messy, breaking off little pieces. Okay, my mind went directly to: blood flow, breaking off...tumor?? He reassured me that the likelihood of this being metastatic from my breast cancer is slim. In fact, he's never heard of that happening. (Of course, I googled that when I got home, and while this is very rare, if metastasis spreads to the thyroid, it is often from the breast. Okay, rare is good. The link to breast cancer, however slight, not so good.)

My doctor looks at his notes, looks back at me, says we have two options and he's not sure what to do. He already biopsied this nodule and it was benign at the time. He's thinking it is a "hot" nodule, meaning it produces too much thyroid hormone. To avoid unnecessary surgery, he decides that I should undergo a thyroid scan, which uses a small amount of radioactive iodine to trace what the thyroid is doing. Describing the procedure, he says I take a pill, wait a couple of hours, then they scan my thyroid. If it is hot, we figure out how to treat it from going into hyperthyroidism. If it is cold, meaning not producing any hormones, then we'll need to biopsy it again. Hot nodules do not need biopsying. Cold nodules have a 5% chance of being cancerous. When I read that, I thought, the odds are still in my favor that this is a benign condition, even if it is chronic, and hopefully treatable.

It's been a few days and I haven't heard back from the place I'm having the scan (which I have no idea where that is!) I'll check back in with my doctor's office to make sure the paperwork hasn't been misplaced. For one glorious day, I was normal. Now, another test...another doctor...more waiting for results...the show must go on!

Blood Test News

Two days ago, my doctor's office left me a message to say that my tumor markers were all normal. Normal? Did that mean stable or actually normal? I didn't want to bother the nurse with a call to find out the exact numbers since I knew I could access the results online through EvergreenHealth. This morning they finally posted the numbers. 2.3 for my CEA marker! You probably remember that anything over 3.0 is high. My numbers dropped over a point (from 3.5) in these two months! All my other marker tests are well below normal. Praise God!

I think that, with an uneducated guess, I was having constipation-related problems in my colon which produced the marker. When I met with the nurse practitioner before my colonoscopy, she  suggested I add water-soluble fiber to my diet. I protested that my diet consists chiefly of nuts, seeds, fresh fruit, vegetables and other high-fiber foods. She countered that sometimes our bodies need a different kind of fiber to do the work, so I tried the most natural, non-sugary fiber powder I could find. My bowels have been very happy ever since. They did have a few days of trouble when I had to take out all high-fiber foods and supplements from my diet, but once the colonoscopy was over, everything has been going smoothly (pun intended) since then. So, while the colonoscopy was not in itself a necessary torture that I endured, it did produce the results we needed in a round about way: normal CEA marker.

Tomorrow I go in to have my thyroid checked. Another day. Another doctor.... At least for now I can celebrate good news!

First Day of School

I sat on the porch as Nathan and a couple friends (one new as of this morning!) set out on a morning stroll up to the high school for their first day of classes. My first thought: they better pick up the pace or they'll be late! Of course, they had plenty of time, but it was just my mommy instinct kicking in. It was all I could do to walk back into the house and not follow them discreetly up the hill. Only the freshman report to school today, so Becca and Ben have one last day to sleep in. Becca will go up tomorrow for her start of her sophomore year, and Ben will start his first day of writing/lit and science co-op classes. Usually my first day of school (the co-op days where we left home) was wrought with packing lunches and piling books for me to work on work on along with encouraging the kids to make sure they have everything they needed for the day. Today, I fluttered around the kitchen, making sure Nathan's lunch was ready for him to grab, asking Nathan what he'd like for breakfast, discovering the eggs I thought were in the fridge were used to make my birthday cake and adapting to a bagel with just ham and cheese... When that was finished, I wandered around, started a load of laundry, cleaned the top of our refrigerator in preparation of the repairman's arrival sometime this morning, fed Sugar, and paced. I think Nathan (wisely!) retreated to his room for a few moments of quiet. Then I took the obligatory (and my first one outside the door!) first day of school picture.

We sat on the porch, I prayed for him, and waited to leave. Soon he was heading down the street, beginning his 9th grade year.

 I wonder if  he would be off to school without me if it wasn't for this cancer journey I've been on. I don't think of it often, but in the back of my mind, a niggling question of whether I'm truly cancer-free lingers. As far as we know, I don't have any cancer growing undetected in my body. But I could. I don't dwell on it, but the thought is there. When it shows itself, I immediately bring it captive and give it to God. But, in my most rational times, I have wondered if another battle is on the horizon and how would that look to home school two high schoolers during it. If that was the only reason for sending the older two to public school, I would wonder if that response is drenched in fear. I fully believe that the kids will have more opportunity to learn and grow on their own at the school. It will be a challenging year for all of us, but in and through that, we will all grow. Do I still want to be a fly on the wall and see what they are doing today? YES (in capital letters!) I'm so used to being involved in his day. In some ways, I'm like the mom of the kindergartener who sends her kid to school for the first day, sad that the long days of hanging together are over. I'm also excited for all the things that the kids will experience this year. One day at a time, slogging our way through the changes and bumps.

What do I have in store this month regarding doctor appointments? On Friday, I go in for a blood draw. Of course, she'll be looking at all my tumor markers, including the one troublesome one. As long as it is stable, though, even if it is elevated above normal, I will not worry. I'm holding onto the thought the GI doctor gave me that this could be my body's normal range. On September 11th, I see my endocrinologist. My thyroid seems to have grown, so I'm sure an ultrasound will be called for, maybe even a biopsy. It will be good to have a conversation with him about his thoughts on whether my elevated tumor marker might be connected with the thyroid. Hopefully, if these two tests are within normal ranges, that'll be all for doctor appointments this month. My days will be full enough of school, football games, soccer,baseball and band.

And, if you are one of my family or friends who might want to email, call or text during the Seahawks-Packers game on Thursday, because of the above mentioned activities--plus Walt working late---we will be DVRing the game late.... So don't spoil our fun!!!

Normal is Good

I'm back watching TV, recovering from the colonoscopy today. Everything looks good. My doctor even scoped up to the small intestine to check and took tissue samples in case something microscopic (colitis) might be causing an infection. Before the procedure, Dr. Brown-Chang sat down and explained  (with her exquisite British accent) that the chance of us finding anything is slim. She said that my tumor marker elevation is also small. Most doctors would not think twice of the .5 increase over normal, but oncologists tend to be overly concerned about blood tests. She admitted that sometimes doctors find something, but if today's scope revealed nothing (which it most likely did), then we should consider that this might be my normal marker level. She's seen patients undergoing excessive biopsies and even surgeries because of just a marker. To Dr. Kohn's defense, she was on a watching pattern for 7 months until I mentioned slight changes in my bowels, and at that point, because it was related to the GI, decided it was enough of a symptom to explore further. Walt has been skeptical of the need of this procedure all along. I went along with it because I'd rather for overkill than wish we had caught something earlier. Dr. Brown-Chang said she would send a letter if the tissue samples were negative or call if she found something, but that I'll probably not need to come back for 10 years. I told her I'd have Dr. Kohn call her if she wants to do this again. She thought it was a grand idea.

After not having any solid food since Sunday night, I naturally was hungry as we left the office. Walt agreed to go to Trader Joes where I picked up tart cherry juice, a salad, popcorn and some dark-chocolate covered almonds. It was a lovely lunch. I've been watching tv/dozing for the rest of the day. The nurse warned me that I might not be thinking clearly today because of the sedative given to me, so tomorrow I'll check to see if any of this makes sense.

I am very thankful and at peace today. No more doctor appointments until September 11th, when I see my endocrinologist about my thyroid.

Prep Day

Tomorrow is my colonoscopy. Because of the clinic's new prep regimen, things are a bit different this time around. After drinking down the bottle of magnesium citrate, I started my trips to the bathroom last night. With last year's prep in mind, I scheduled a vet visit for Sugar this morning. My only concern was how hungry I might feel, since I'd be fasting all day. I did cancel another appointment I made at 2 after reading I needed to be home to start taking medicine at 3. As I got ready to go this morning, I sure hoped I didn't regret scheduling this appointment.

The family at the beginning of the trip

Fortunately, the trip was without incident and Sugar is doing fine, for an "old girl." This old girl went on a hike with us yesterday. The whole family climbed the trails together, laughing and chatting. Then we went to Panera Bread for my last meal. (I wanted soup, not because of a craving, but trying to be wise on what would be easy to digest.) With only a few days of summer vacation left, I am eager for as many family adventures as possible.

Ben and Sugar at the end

 Today, however, the kids have been on the computer too much, I'm watching marathon Netflix, and we are just trying to get through this day of prep. Nathan has his board of review for rank of Life Scout tonight. One more before Eagle! Walt is able to take him, Becca caught a ride to soccer practice from the Baughns, and Ben is happily hanging out with a neighbor. Tomorrow afternoon is my procedure. I try not to think about what my first food will be, as it makes me hungry, but whatever it is, I'm looking forward to it. Mostly, we are trusting God that this procedure is just a bit of overkill, something we cancer patients endure because of the deadly nature and unpredictability of this dreadful disease. My hope is that, not only does the doctor not discover any cancer, but maybe she'll find out a reason why my tumor marker is elevated. If possible, I'll post the results tomorrow.

Frequent Flyer in the Gastroenterology Office

After a fun, too-short trip to Florida, we are back home. Early this morning--actually it didn't feel so early because I am still on East Coast time zone--I met with the nurse practitioner to schedule another colonoscopy. Yes, it was just a year ago I went through this. The result of my thyroid function blood test was normal, so Dr. Kohn advises me to get my colon scoped again. The elevated tumor marker is the main reason, but constipation symptoms contribute.  The nurse practitioner mentioned that switching back to a refrigerated probiotic (something I switched from a few months ago) and trying an over-the-counter fiber supplement could alleviate the constipation. If that is the case, I will probably follow up with Dr. Kohn to make sure she still thinks all this is really necessary!

The procedure for prepping the colon has changed a bit, using over-the-counter medicines instead of the evil-tasting Moviprep.  It still will make for a long night, but hopefully the taste will be a bit more tolerable. I have the procedure scheduled for the end of August, the first we could match Walt and my schedule with the doctor's.  Last time I think I had an 8 or 9 a.m. appointment, and the best I could do now was 1 p.m. This means a longer stretch of time when I'm awake and unable to eat (eating is so overrated!), but the good thing is I don't have to wake up so early in the morning to take the last round of drink. So much fun! And what did you do on your summer vacation?

4-Month Doctor's Appointment

My how four months flies by. Today I was once again sitting in my doctor's office, awaiting my check-up. Things have changed in the hospital--a new cafeteria opened, new signs... Other things are the same--lots of sick patients, many in head scarves, some being wheeled in by a caregiver... An older couple was cheerfully chatting with a gray-haired lady and discovered they all went to the same high school in Bellevue. They found other things in common than the cancer that brought them to the office. A cheerful man was escorted back to get an IV for a scan. Yes, I said cheerful. He had the most amazing smile and lightness in his demeanor. I was on a walk with a friend yesterday who worked in a cancer center for a while. She said it was hard because those who were healthy didn't come as much, and those who she saw often would get sicker and sicker. I looked at a couple of older, frailer people today, maybe recognizing one or two of them from a previous visit, and thought, they probably are the ones who frequent this office. 

 

When I went in for my appointment, I mentioned to Dr. Kohn the white marks on my arms and how I googled it and maybe it was connected with thyroid function. My endocrinologist told me that tamoxifen could affect my thyroid.  In looking at the symptoms of hypothyroidism, I noticed constipation. Clicking through, I discovered that a slow-moving bowl is also considered constipation. Recently I've had that problem. (I  know--too much info!) When I mentioned it to Dr. Kohn, she said that might explain the CEA marker. It is mostly used for GI stuff, and can cover a wide assortment of things related to cancer to other things that are not as harmful. She said she would check my thyroid levels, and if they were low, then we would try to treat my thyroid and see if the other things clear up. If the thyroid is normal, then she recommended another colonoscopy. Even though I just had one last summer, she would like to follow up again, because of the tumor maker and minor symptoms.

When I got home, I googled colon cancer symptoms, and while the change of bowel habits is there, I don't have anything else. In fact, unexplained weight loss is a symptom, and I have been struggling with gaining weight lately. I've tried curbing my eating, getting in more exercise, but I still have been gaining. This would be more along the lines with hypothyroidism. Not only do I lean that way in my "expert" analysis of my symptoms, I would prefer it to having to go through another colonoscopy. I should find out the results of the test by next Tuesday.   

Finally, Dr. Kohn found a lumpy area in my right breast...the other, healthy one. She thinks it's a cyst or fibrous tissue, but isn't too worried about it. When I have my mammogram this fall, I'll also have an ultrasound to make sure it really is harmless. So, I finally left the office with appointments for a blood draw in two months, mammogram, ultrasound and bone density scan in three months, and another blood draw and follow up appointment in four months. I know I should be grateful that it wasn't every week or every three weeks like it was a couple summers ago, but it still feels overwhelming. Based on the results of the thyroid tests, I'll have other appointments slotted in there, too. I have an appointment already scheduled for September with my endocrinologist, Dr. Moore, but maybe that'll have to be rescheduled to an earlier time. 

So, for now, I wait. I try not to worry. I continue to trust in God's good and perfect plan.  We leave for Florida a week from tomorrow, so hopefully I'll have some answers before that trip. Today, I will remember that it's not me frequenting the office, that my weeks and months between appointments is a blessing. Living for today...

Tale of Two MRIs

As I walked the long hall back to the MRI room on Tuesday, memories of the same walk flooded my mind. My last diagnostic MRI was April 24, 2012. At that time, I was stunned by the idea that I had cancer. After the technician inserted the IV, she left me with my thoughts as we waited for the MRI to be available. I remember praying that God would be with me, trying to remember verses for strength and comfort. When it was time for the MRI and I was lying facedown on the table, the technician reminded me to breathe normally. Of course, my brain went straight to breathe, breathe normally, what is a normal breath, am I breathing normally? I thought I cued into the right pacing when suddenly a massive thundering boom sounded, followed by short, staccato noises. The suddenness and the volume of the noise led me to catch my breath. Oh no, what about breathing normally? With heart racing, I tried calming my breath as best as I could.

On Tuesday, I had a different technician and he didn't say a word about breathing. Maybe he thought I was a veteran, or maybe he wisely realized it was better not to mention a word  about breathing if he wanted me to breathe normally. I was prepared for the noises and they didn't seem so loud. My challenge this time was I started feeling sore where my rib pressed against the table. Knowing I needed to lie still, I focused on the music (when I could hear it), thought of my friends in Africa who were meeting their boys today, remembered Holy Week and Jesus' sacrifice for my sins... Before I knew it, he was moving me out of the tube and I was trying to catch my balance after lying still for so long.

The first time around, I remember being encouraged to do something relaxing that day. Medical people know how overwhelming the cancer journey is at first and suggested I find a way to take a break from it. On Tuesday, after both my blood draw and MRI, the technicians asked me what I was going to do that day. Cancer wasn't consuming my whole world now, and they knew I would have plans. I've transitioned from being overcome by cancer to giving cancer its proper place in the whole of who I am and do. It'll be part of who I am for the rest of my life, and as the days and months and tests and results pile up, that recognition becomes tolerable. Especially when I walk step-by-step with God through this journey.

Of course, the ultimate difference between my two MRIs was the result. Two years ago, I had three suspicious spots that needed biopsying. On Wednesday, I received the wonderful news that my MRI was clear. Then on Thursday, my oncologist's nurse called to confirm that my blood test was stable. What that means is the two other markers are normal, and the CEA marker moved up a smidgen, to 3.3. It has been hovering around the 3.0 (which is normal) mark for several months of testing, and with the clear MRI, my doctor gave me reprieve from additional testing. I'm banking on the idea that spring allergies and their corresponding inflammation is causing the higher mark. Could be lots of other reasons, too. My next visit will be in July for my regular 4-month checkup, so for now, I feel blessed to be considered cancer-free. Time to plan for our Arizona trip and the end of the school year and summer and all kinds of things that have nothing to do with worrying about some rogue cancer cells. I'm thankful for how far I've journeyed in the past couple of years, and excited to see what God has in store now!

Monday

"A man who can break down and cry — is man who will break open his heart to let your heart in."

 Ann Voskamp's Grandma

http://www.aholyexperience.com

As I read this today, I thought of my dad, tears unashamedly running down his cheeks on the night of my high school awards, not afraid to tell me how proud he was of me. 

I thought of my dear husband, quietly wiping away the tears as the nurse inserted the needle into my port at my first chemo. 

Then I thought of Jesus. The shortest verse in the bible speaking volumes into my heart. Jesus wept.  Jesus wept because He loved Lazurus. He wept for Mary and Martha because He knew they grieved the death of their dear brother. Later he wept when He overlooked Jerusalem, knowing that so many would not understand. 

I know Jesus wept over me. How do I know? Because if one of my children was going through something difficult, I would have cried. I imagine Him weeping when I heard the words that I had cancer, surrounding me with His love as I cried tears of anguish. He wept because He knew I thought of my mom who died of cancer, only a couple years older than I am now. He wept because He knew I couldn't see at the time the blessings that would come out of the ashes. When I didn't understand, He knew.

On this Monday of Holy Week, I was reflecting on how Jesus felt. He was about to face His gravest challenge. On Good Friday two years ago, I went in for an innocent mammogram--unaware of the repercussions that lie around the corner.  Unlike me, Jesus knew exactly what would happen to Him--the pain, the taunts, the jeers, the desertion.  He knew He would need to carry the sins of the world...and the hardest part...be separated from God. 

Tomorrow when I go in for my MRI, as I'm shut up in the tube with the crazy, loud noises, I will picture Jesus enduring the cross. But, I also will know that He is right there with me, comforting me, holding my fears. Just as He knew what His Easter week will be like, He knows what mine will be. My heart is at peace with Him by my side.

He has broken open his heart and let me in. As Ann's grandmother suggested, this is the type of man I can trust.  

Saturday Musings

Saturday mornings... even though I was up earlier than normal to take Nathan to his ACT test, and paid bills...read a few chapters in my book, drank coffee and now green tea, washed dishes (twice), made breakfast for a kid (twice), will go out and pull weeds soon, will also pick up Nathan from his test and go to his baseball game later this afternoon--despite all of this, I LOVE Saturdays. I think my favorite thing is the change of pace, a mix-up of the schedule, not the same-old-same-old.

This Saturday is especially remarkable because my amazing friends are finally, after waiting patiently and tearfully for months, boarding a plane for Africa where their two teenage boys await. Yes, they are adopting two teen boys into a family of four girls! Only God can put this family together, and in His perfect timing, these boys will come home. Home to not only a room with bunkbeds that have been standing alone for too long, but also to a whole posse of people who have prayed for this day. There's still a lot of work to be done (both in Africa and on our knees), but we are all excited to see how God works out all the details.

Now for medical things. Next Tuesday, on the 15th, I will be having my blood draw (to recheck tumor markers) and my MRI. As always, I would love prayers for peace as I go into these screenings. My hope is that the tumor markers drop and nothing suspicious shows up on the MRI. More importantly, please pray that I walk in His strength during these next days. We have plans to go to Arizona the following week to soak up the sun and enjoy a bit of family time. If all goes well on Tuesday, this will be the relaxing getaway our family longs for. If not, well... I refuse to borrow trouble for something that may never come to pass. The best plan in all of this is to live for today. I'm not wasting one of my precious Saturdays worrying about tomorrow.

Or as one of my favorite bloggers, Ann Voskamp, writes:

The James 1  simple day planner for the hard days, for every day.
1. Ask God for wisdom
2. Believe God without doubt
3. Thank God no matter what

“If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, & it will be given to you. But when you ask, you must believe and not doubt.” James 1:5-6

Tumor Marker Saga Continues

Here is a quick update on my screening appointment. My CEA tumor marker blood test is up again. I'm not sure if I'm a fan of this test, but my oncologist, despite the limitations, doesn't feel ready to give it up. Four months ago, it registered 3.1 (normal is 3.0 max). Then two months ago, it dropped to 2.9. On Friday, Dr. Kohn said it was 3.2. Yes, there are benign (non-cancerous) reasons and unknown reasons why this particular marker can rise. It's sort of a "check engine" light on my car's dashboard, though, and should be investigated further to make sure it's not something serious. On April 15th, I'm scheduled for a breast MRI and another blood test. In our last appointment, my doctor discussed how I was in the gray area on whether I should alternate my diagnostic screening between mammograms and MRIs. My concern with MRIs is the high level of false positives that happen, remembering the three extra biopsies I endured the last time I had a MRI. Dr. Kohn agreed that 's the downside,but because of my elevated blood marker, she leans toward going this route. I told her I'll defer to her judgement. I'm not excited about it, but hopefully a clear MRI will put any fears (at least for now) at ease.

My white blood count and potassium levels are low, too. She isn't too concerned with the white blood count, especially since tamoxifen can affect that. Not sure what could cause a drop in potassium. The last time I was at this level was when I was undergoing chemo. She is recommending that I eat an abundance of bananas and oranges to help raise the level. The rest of my blood counts are good, including a different tumor marker test and my liver functions.

I'm feeling great. My shoulder is continuing to improve. Walt has started walking with me at night, which helps me fit it into my busy schedule.Baseball has started, which adds to the already hectic job of running the kids around. As much as I don't like losing an hour in the morning, having more light at night will be a blessing in lots of ways.

So, the plan now is to continue walking, choosing healthy foods, and trusting God. He knows what is going on with each of my cells, and as I lean into Him, I know He will provide the strength to get through each step. For now, I'll focus on each day and not think about April 15th's test. Thanks for your prayers, and I'll keep you posted.

Screening Time Again

It's hard for me to believe how fast the time flies between my screening appointments. It seems like yesterday that I was awaiting the results of my latest blood test. Yet, it's been two months. Tomorrow I go in for another blood draw and will meet with my oncologist on Friday. Of course I'll let you know the results, but in the meantime, I would appreciate your prayers. Thanks again for running this race with me.

Thankful in This New Year

Waiting on test results is one of the hardest things a cancer survivor endures. The last time I had a blood test, two months ago, one of my tumor marker  indicators was .10 out of the normal range. For two months, I pushed aside worries and concern, determined to trust God and enjoy Christmas. January 3rd lurked, and as it approached, I relied more and more on time with God to keep from worrying. Tumor markers pick up a protein that is given off by cancerous cells, usually before any symptoms develop. The downside of this blood test is sometimes benign, noncancerous causes can cause an elevated score. Doctors look for trends or jumps in the score to determine the need for further screening (bone scans, CAT scans, that sort of thing.)My oncologist tried to be neutral about this small elevation in my score in November, but she wanted to stay on top of it by retesting in two months. That date was last Friday. I would have the weekend to wait for the result. Yesterday, every time the phone rang, my heart raced. The call I hoped for yet feared never came.

Coming home from my physical therapy appointment today, I noticed the flashing light on the answer machine. The cheery voice of Dr. Kohn's nurse chirped the news that my blood test was normal. Normal!! No further testing. No waiting to retest. No questions. Normal is a wonderful thing. Even though I tried not to worry, the sweet lightness of good news set my emotions free. Immediately, I called Walt and he, too, mentioned a bit of nerves when I uttered the words, "results of my blood test." We both enjoyed the relief and joy that good news brings. We are incredibly thankful to our merciful God.

Regarding my shoulder, I've been making steady progress. My physical therapist is able to work through a lot of the stiffness through stretching and strengthening exercise, but he admits that some will remain for a while, with time and consistent stretching the only remedy. Unfortunately, I still experience spasms when I jerk my arm (like when I slipped on the ice last week) or lean on it wrong, but that's because all the muscles and ligaments are still healing. I bought a foam roller and an over-the-door shoulder pulley to use at home. The pain I had in my back is almost all gone, but when it aches (like when I'm on my feet too long), stretching on the foam roller works wonders. The shoulder pulley helps stretch my stiff muscles, and I've increased my range of motion. Thankfully, my neck is no longer sore at night.  I've scheduled three more appointments with my PT to ensure as much progress as possible, and then the rest of the healing will be through faithfully exercising and stretching on my own. I'm looking forward to seeing how much better my golf drives and tennis backhands will be with my shoulder working properly. PT takes time, but it's been worth it.

The kids have jumped back into their regular school schedule and activities, our home is back to normal, and I've almost finished grading essays from December. Between Christmas, prepping the house, and the busyness of having a house full of guests--not to mention watching as many Christmas movies as possible--I couldn't carve out a stretch of time for concentrated focus on the papers. With renewed energy, I got through a ton of grading yesterday. Usually January is a hard month, but so far it's been good. I am sad that Christmas is over, but normal is a good feeling.

Give thanks to the Lord, for he is good;
    his love endures forever. Psalm 118:1