March 1, 2013: A Journey of Faith

Yesterday I was diagnosed with breast cancer.

Today I began a journey of faith. 

Before even stepping into the doctor's office to hear the results of the biopsy, I was fairly certain I had cancer. But I also already know the outcome of the upcoming battle. The Lord told me in a beautiful blessing that although the road ahead is long and difficult and full of challenges, this disease will leave my body and I will be made whole. I have faith in the Lord Jesus Christ and in His promises to me. As we sing in the not-so-well-known fourth verse of a beloved Primary song, "I am a child of God, His promises are sure. Celestial glory shall be mine, if I can but endure."

As I pondered the blessing I received, I wondered about the part that instructed me to learn all I could and gain as much knowledge as I could and then TEACH IT. That part really made me stop and think. While pondering it, I was impressed that I was to document this journey from breast cancer patient to breast cancer survivor in a positive and spiritually uplifting way. I suspect it's going to be difficult to find the positive in some of the experiences I am about to have, but I will seek for them and share them.

I've titled this post with the date because that's when my private breast cancer journey began. But it wasn't until I realized I couldn't keep everyone who wanted to know what was happening "in the loop" so to speak, that I decided (after a suggestion from Janae) to blog about it. That way, any of my friends can tune in at will and be updated on just as much or as little as they like.

Early February:  "Hmmm, what's that?"

I didn't have a clue that anything was wrong until about a month ago when I got out of the shower and noticed what appeared to be a lump or a swelling on the outside of my breast. My skin was still damp and I thought that could be causing it. After readjusting things a little, it was no longer noticeable; so I dismissed the incident as unimportant.

Until I noticed it again a few weeks later. This time, as I lifted my arm way back over my head, I noticed a dimple or pucker under the breast. After Googling the symptom, I knew that I needed to get a mammogram and find out what was going on so I called my family doctor for a referral. 

The mammogram on Feb. 22 went beyond uncomfortable straight into "painful" for the left breast. The pain and the fact that they repeated the mammogram on the left breast twice were both pretty good clues that all was not well. An ultrasound confirmed my fears:  I had a golf-ball sized mass. An ultrasound-guided core biopsy was scheduled for Monday, Feb. 25.

My friend Cindy took me for the biopsy and it was such a blessing to have her there. She made me laugh and calmed my fears and just visited with me during the l-o-o-o-o-n-g wait for the procedure to begin. Advances in medicine have changed both the diagnostics and treatment of breast cancer, and I was surprised to find that the incision for the biopsy was only about a quarter of an inch long and no stitches were needed. Everything was done by needle through that one hole. The only snafu was that the local anesthesia didn't seem to work very well on me, and it took six shots before they were able to complete the biopsy procedure. I was sent home with an ice pack and instructions to rest for a day or two (yeah, right!), and warned that I would bruise pretty good. Yep. Sure did. They said we'd have the results in two to four days.

Two days later, there was a message on my answering machine from my family doctor asking me to call. I did and thought I left a message for the nurse; but I realized later that when my son and his friend distracted me for a few minutes, I hadn't completed the steps necessary to actually leave a message on their voicemail system. By the time I figured that out, they were closed for the day and I was left anxiously waiting for morning.

February 28:  The Diagnosis, Heavenly Intervention and A Blessing

Nurse Shay called me first thing in the morning and asked me to come into the office. The wait until my 1:00 appointment seemed to take F.O.R.E.V.E.R. When the doctor walked into the exam room looking quite serious and said, "It's not good news," my suspicions were confirmed. I have breast cancer – more specifically, I have invasive ductal carcinoma and lymphovascular invasion by carcinoma is seen.

The doctor explained in general terms the various treatment options – radiation, chemotherapy, and either mastectomy or lumpectomy – and asked if I had any preferences as to a surgeon and oncologist for referrals. Hmmm. Funny you should ask. 

After my mammogram last Friday, I had a hair appointment for my usual color (no, I don't remember the original one) and cut. I mentioned to my stylist, Darlene, that the ultrasound had found a golf-ball size lump and she told me that the stylist in the next booth had just been through breast cancer six months ago and was now cancer free. We talked through the whole hair appointment about Becky's procedure and she enlightened me as to some of the things I could expect to go through. Her cancer was significantly smaller than mine, but I felt like she'd been heaven sent because the conversation we had was so uplifting and I felt such peace as we talked. She loved her surgeon – who she said prayed with her before the surgery – and so I asked her for his name. 

So did I have a preference for a surgeon? You bet I did. I didn't know any oncologists though, so my family doctor arranged for referrals to Becky's surgeon and an oncologist. I was told they would contact me in the next day or so with appointments.

That evening, Doug and Cindy came over and Doug gave all three of us beautiful blessings. I wish that I could remember more of the instructions and promises made, but my memory fails me when I need it most. However, the blessing I received left no doubt in my mind that this is going to be a difficult challenge for our family. It was quite clear from the promise that I will be "made whole" that this trial is one I must endure; there is to be no priesthood healing and avoidance of the trial. It is going to be a very difficult trial of our faith.

March 6:  The Surgeon

It's been my experience that some medical professionals either lack a bedside manner because of some basic personality flaw, or forget – because of their day-to-day familiarity with illness and disease and the treatments thereof – that a new diagnosis of a serious disease or illness is a life-changing event for the one receiving the diagnosis. It may be business-as-usual for the medical professional, but it is way-out-of-the-comfort-zone for the patient. So we were pleasantly surprised when we met the surgeon.

He spent probably 40 minutes with us between the pre-exam discussion, exam and post-exam discussion. He patiently expounded upon each and every possible scenario that could result from my diagnosis, without a hint of exasperation at our questions and without making us feel like he'd told the same thing to the last couple of hundred patients he'd seen. He made me feel as if I was the only patient he had and his entire focus was on me. 

The surgeon took the time to explain to me what the Nottingham Grade III (poorly differentiated), Tubules Score 3, Nuclear Score 3, and Mitoses Score 2 meant on my biopsy results, and reassured me that more tests would give us a better picture of my 3.5 CM, T2 tumor. He told us that the survival rate is the same with either full or partial mastectomy and so he believes in breast conservation surgery, or lumpectomy to remove the tumor and the sentinel lymph node under the arm to ensure that the cancer has not spread into the lymph system. Radiation options include external radiation on the whole breast after surgery (for about six weeks), or a mammosite – radiation inside the breast – for five days. The mammosite cannot be done if lymph nodes are involved though.

The surgeon also did several things that made an impression on Mike and I that he is not only a humble man, but definitely the surgeon for me. First, he left the room so I could get dressed again before we discussed his findings. (I'm sorry, but it's difficult to concentrate on anything the doctor is saying while wearing an open paper gown! And it's impossible to take notes when your hands are busy trying to keep your stuff inside said paper gown.) Second, when I asked him whether he would recommend surgery or chemo first, he deferred that decision to the oncologist. A surgeon who defers the date of surgery to another doctor? Really?? There was not one iota of an, "I am the all powerful and all knowing surgeon and you will do as I say" type of posturing. And finally, when he said that we'd meet again after I visited with the oncologist, I asked if he was available on Fridays since both Mike and I were off that day and we wouldn't have to take time from work. He replied, "Not really, but let me see what we can do." He then instructed his staff to squeeze me in at lunchtime on his surgery date to accommodate OUR schedule. 

Oh. My. Goodness. This humble, God-fearing man is who I want doing my surgery!

March 12:  The Oncologist

I don't have any notes from my meeting with the oncologist (my hands were busy holding my stuff inside said paper gown); but we liked him and his staff nonetheless. 

The oncologist explained to us in great detail the recommended course of treatment and its possible effects on my body and the emotional state of our family. It would all depend, however, on a few more diagnostic tests:  a MUGA (Multiple Gated Acquisition Scan) test and a PET-CT scan. The MUGA scan would see whether my heart was strong enough to handle chemotherapy, and the PET-CT scan would determine if the cancer had already spread throughout my body's lymphatic system. Those tests would be scheduled before we left the office. Assuming I passed the MUGA test, I would also need to see the surgeon to have a port put in for the chemotherapy.

One of the things that stands out in my mind from that meeting with the oncologist was that I should avoid reading things on the Internet or that well-intentioned friends shared. He explained that everyone's cancer is different. The treatments, the side effects, the emotional effects and the spiritual effects were different for each person; and reading too much (particularly negative things) would make this journey more difficult for me by possibly psychosomatically influencing how I felt. I had already decided that I wanted to listen to my body and how IT was telling me it felt rather than reading about things and then trying to fit my symptoms into those results, so this made sense to me.

Another thing that stands out in my mind is the material the oncologist's office provided for us. We left that day with a specially-made notebook in which to keep all of my lab reports and personal medical records, and with sections on side effect management, nutrition, a "Chemotherapy and You" book from the National Cancer Institute, community resources and other valuable materials to help me through this journey. In addition, they gave us three books:  "Breast Cancer: Myths and Facts, What You Need to Know" for me, "100 Questions and Answers About Caring for Family or Friends with Cancer" for Mike, and "A Mom of Many Hats" for Nick. Each of these books discusses my cancer in a way that is immediately personal for each of us.

March 14:  MUGA Test and A Preemptive Strike 

My MUGA test was scheduled at a local hospital for Thursday afternoon. I was quite anxious about this test since I didn't know exactly how it would be performed and I'm very claustrophobic; but I need not have worried. The hospital staff was very pleasant and accommodating, and quickly put me at ease.

It began with an injection of a radioactive tracer into my blood. After a 20 minute wait to allow it to circulate, I was led to the machine and told to lie down and remain very still throughout the test. They moved the gamma camera into place angled over my heart, and there I stayed for the rest of the test. Whew. That wasn't so bad. The technician told me when she was finished that they were looking for a score of 50 or better and that I had scored a 69. I didn't fully appreciate the score until she told me that very few patients score over 70. Yay! I have a strong heart!

After meeting with the surgeon and oncologist over the prior week and learning that I would definitely lose my hair with the chemotherapy, I worried about how it would affect not only my son and husband and myself, but also the Primary children I teach. I decided to take a preemptive strike and cut my hair real short to start getting everyone used to how I'm going to look in the not-too-distant future.

I ran the decision past Mike and Nick and received their thumbs-up approval, so off I went after the MUGA test to my stylist, Darlene. She asked what style I wanted and I told her to just have at it and do whatever she liked. She did and we all love it. We also decided what the heck; who knows what my real hair color is anymore anyway? So Mike picked out a dashing red shade that we also loved. Dang. Too bad this color and style is only going to last for another couple of weeks! 

March 15:  The Boutique and The Surgeon Revisited

Both the oncologist's and surgeon's offices had referred me to a wonderful boutique for cancer patients. We had to meet with the oncologist at lunch time on Friday, so we decided to head into town a little early and check out this place for wigs and hats.

Colleen at the boutique was very pleasant and accommodating, and quick to put us at ease about the upcoming changes in my life. She brought us back to the wig fitting room and suggested a couple of styles and colors. I had only tried on one wig before I wigged out and decided that I was not ready to be trying on wigs! That was just moving way too fast for me, so I yanked it off and practically ran out of the room to the safety of the sales floor. I tried on a bunch of soft hats instead and eventually chose a few of those for the inevitable day when I lose my hair.

After paying for our purchases, Colleen brought me to the front of the store and instructed me to pick out a blanket, hat, tote bag and other items donated to the store for newly-diagnosed cancer patients. She said that the blanket and hat would keep me warm during chemo treatments, and the tote bag would carry it all back and forth in style. Tears sprang to my eyes as I thought about the kindness of Christlike strangers who had already walked this path and were lighting the way for me to follow. 

The surgeon was just as wonderful, kind and compassionate as he'd been the first time we met, though he looked a little perplexed when he greeted me. He broke out in a big smile when I assured him it really was me and related the story of the preemptive strike on my hair. We discussed the planned course of treatment, then he patiently explained everything we needed to know about the port:  the surgery to implant it, how it would work and feel, and the fact that it would not be visible outside the skin. (Side note:  Now that it's actually in, I beg to differ on that point! Though the PORT is not visible, the LUMP it creates is very visible and, frankly, kinda creepy. Ugh.) We left the office that day with a date for surgery.

March 18:  The PET-CT Scan

While Mike was more worried about the surgery and the chemotherapy coming up later in the week, I was most concerned about the PET-CT scan because of my claustrophobia. 

The preparation for this test began 24 hours prior, on Sunday. I was not permitted to do anything, lift anything, push or pull anything; in short, I was to be as still and inactive as possible. Yeah, right. I was also put on a low carb / high protein diet for Sunday, with nothing by mouth after midnight. Doug came by Sunday night to give me another blessing to help calm those claustrophobic fears, and I was again promised that this disease would leave my body and I would be made whole. Frankly, that promise has made this whole journey so much easier to take. It's like having a road map to get from one side of the country to the other, only easier. All I have to do is stay on the road marked "faith" without turning left or right the whole way, and I will eventually arrive at the destination "whole."

Anyway, the test was scheduled for 1:30. When I arrived I was given another radioactive injection and then 16 oz. of some nasty-tasting, Gatorade-type of drink. Apparently the sugar in the drink would head to any cancer spots that may have migrated from the original tumor. I was supposed to finish that 16 oz. and then have another 16 oz. before heading to the PET-CT scan. (Fortunately, I was allowed a potty break on the way to the test ... but I had to use a special bathroom for radioactive people! That was weird.)

I walked into the PET-CT scan room and was immediately relieved. Though the technician had said that I would be going into this machine head first (and that it wasn't like an open MRI but was enclosed), I could immediately see that the machine was open on both ends and not fully enclosed as I had feared. I could do this! I could see out of it if I needed to!

He helped me onto the table and explained how long the various tests would take. I was to remain absolutely still throughout, or we'd have to do them again. No problem ... no way I'm moving if it means repeating a 30-minute test inside that thing!! I closed my eyes and began singing Primary songs in my head to help keep my mind off the fact that my face was just inches away from this machine. I sang, "We Thank Thee, Oh God, for a Prophet," "I Am a Child of God," "Latter-Day Prophets" and any other Primary tune I could even vaguely remember. At one point I ran out of Primary tunes and began to panic from claustrophobia, but I recalled a particularly wonderful part of the blessing Doug had given me the night before that said the Lord would be on my left hand and on my right hand and before my face, and my fears immediately calmed. I share this intensely personal and sacred part of the blessing with faith that those who need to hear will hear.

In all he performed three tests:  the CT scan, the PET scan of my whole body, and a separate PET scan of just the tumor area. I was in the machine for a little over an hour with only one momentary bit of panic when I took my focus off the Primary songs. The best part was when he was helping me out of the machine, he informed me that the PET scan (though he could not "officially" read it) had shown the cancer nowhere but in the original tumor. Thank God!

March 20:  The Port Surgery

This worried Mike more than me ... at least until the hospital started asking me if I had brought my living will with me. Hmmm. Perhaps this surgery is a little more involved than I had thought?

This out-patient port surgery is to implant a small device about the size of a quarter under the skin in my chest. The port connects to a small tube which is placed inside one of the large central veins that takes blood to my heart. After it is implanted, it can be used to give medicines and fluids or to take the blood samples that are a weekly ritual for cancer patients.

Again, the staff at the hospital were wonderful. The admitting nurse's sense of humor kept us chuckling as she took vitals, and the Eddie Murphy look-alike male nurse who took over from her had us in stitches. OK, that's probably a poor choice of words. But he was funny! Mike was with me through it all, at least until after "Eddie" gave me what he called my "happy juice" and prepared to take me away. Before I knew it, I'd been wheeled into the operating room and was answering a question from the anesthesiologist. Next thing I knew, I was coming to and headed into recovery. Now THAT's my kind of appointment. Take me in, put me to sleep and wake me up when it's over. None of that staying-awake-through-the-whole-thing stress!

I was in recovery for an hour or two, then released to go home. Another day done. What will tomorrow bring?

March 21:  Starting Chemo

Chemo. That's what tomorrow brought.

It wasn't as bad as I thought it would be, though it was definitely weird. After the usual blood test (geez, can you find a vein that isn't already bruised? OK, I see the need for the port), my nurse brought me back to get me set up for chemo. First she went through the basics of a "Patient Focused Chemotherapy Class" and gave me a handout to help me remember the signs and symptoms of the big three:  anemia (low red blood cells), neutropenia (low white blood cells) and thrombocytopenia (low platelets). The weird part came after we went through the instruction when I was being hooked up to the medication through the port.

The port was still very, very tender from the previous day's surgery and I could definitely feel her pushing on it despite the pain medication I was taking. And it was other-worldly having this thing plugged into my chest, and walking around pulling my IV pole with me to the recliner where I would be for the next 90 minutes. (I'm finding this whole port thing to be pretty creepy. There was another woman across from me getting hooked up to her IV too, and I could clearly see the bulge of her port. Maybe I won't be so freaked out about it after a while, but I'm still finding it pretty yucky.)

Anyway, the first half hour I was given Palonosetron hcl and Dexamethasone sod phosphate, pre-medications to alleviate nausea. After a 30-minute rest for that to kick in, Doxorubicin hcl and Cyclophosphamide were added to the IV. The information sheet they gave me tells me that Cyclophosphamide slows the growth of cancer cells; all the sheets say about Doxorubicin is that it is a chemotherapy drug used for treating, among other things, breast cancer. 

The room where you take the chemo is large and open. I was in the middle recliner of a row of three across from my nurse, with Myra on my right. At one point she looked over at me and said, "Don't do what I did. Eat. Drink water." She was in getting fluids because she had become extremely weak from letting herself get dehydrated and not eating. As we chatted, I became even more aware of how blessed I am to have the gospel of Jesus Christ in my life. I am surrounded by friends who love me and are helping my family through this trial; poor Myra has only her husband to help her. I know that this trial has an end; she does not have the same knowledge of her situation. We talked about God and faith, and I promised to pray for her and she promised to pray for me. I hope to get to see her again and have another discussion. Perhaps an opportunity will present itself to share the gospel with her.

I got up after the 90 minute treatment feeling absolutely normal and headed home with Mike. I took it easy all night, not knowing what to expect or when the side effects might kick in. Somewhere in the middle of the night nausea set it, but I was prepared with the nausea pills that had been prescribed. Thirty minutes later, I was back to sleep.

The following day Mike took me back to the oncologist for my shot. Since chemo kills the good cells as well as the bad, each chemo treatment is followed in 24 hours with a shot to help boost white blood cell production. The Pegfilgrastim is given by injection under the skin, and then you have to hang around for about 30 minutes to make sure there's no reaction to the drug. We headed out after 30 minutes feeling fine.

March 22:  The Hat Shower

Nick got the idea to throw me a hat shower from the "A Mom of Many Hats" book the oncologist gave us. He laboriously put together an invitation, then he and Mike drew up a guest list. The idea behind it was that since I'm going to lose my hair, it's going to be either wigs or hats; wigs wigged me out, so hats won. The invitation asked everyone to bring a hat with a spiritual message tucked inside.

Nick planned everything to the last detail. He planned a hat toss game, tossing little hats into a big one; and a golf ball game (because that's the size of my tumor) where you had to roll a golf ball into a cup and make it stand up. It was great fun watching all the guests compete in the silly games like a bunch of little kids! Nick and Mike also planned a "greeting" game where Nick put a label with the name of a person / character on everyone's back and they had to figure out who they were by asking questions that could be answered with a yes or no answer. 

He even planned the menu, including some homemade top hats (marshmallows dipped into pink chocolate and placed on chocolate cookies dipped in pink chocolate). Mike ordered a cake imprinted with a beautiful hat and the words, "Breast Cancer Survivor:  A Journey of Faith." It was a great evening and I now have a wonderful selection of hats from which to choose. The only bummer was that Nick was hoping some of his friends could come, but they weren't able to; and so once again, Nick was the only child at an all-adult party. He was so disappointed that he spent the majority of the night in his room. (Being an only child really sucks sometimes.)

Chemo Aftermath

Ugh. Side effects kicked in pretty good starting Saturday morning. The lower regions weren't functioning properly – and I'm not allowed to take any OTC medications without doctor's approval – so off to the "Side Effect Management" portion of the notebook I went. I learned what to add to my diet to alleviate the problem – which it did ... S-L-O-W-L-Y over a period of several days.

The worst side effect was the fatigue. Oh. My. Gosh. I slept most of Sunday, not even getting out of bed until after noon and heading back for a three-hour nap shortly after getting up. I went to work on Monday, but came home around noon and took a three-hour nap. Tuesday's nap was about two hours, and Wednesday's only about an hour; but I can see that the days following chemo are going to be pretty non-productive if this is the beginning of a pattern.

Nausea raised its ugly head a few times, but was beaten back with the pills. Thankfully I'm not throwing up at all ... at least, not yet. I understand that still may be one of the side effects I have to deal with.

From the March 21st chemo all the way through to March 29th, fatigue ruled the day; but my birthday (March 30th) was wonderful. No side effects and no fatigue! None for Easter, either! Of course I snuck in my normal Sunday afternoon nap anyway, but that's out of habit. Been doing that for years and see no reason to stop. :)

Now ...

... you're caught up on what's been going on over at our house. Thanks for stopping by.