The Dark Places: Take Three

The most recent piece to this ever changing puzzle that I am trying to wrap my brain around is the fact that side effects from chemotherapy can present themselves immediately or anywhere from 9 to 12 months AFTER the infusions have stopped.

Early this week, my bones and joints started to ache...it seemed a similar feeling to what was occurring just prior to my need for surgery on my left side. I was worried initially that it was a sign of another infection. However, there has been no fever. No other symptoms. Several of my medications were halted knowing that chemo is starting again on the 7th so there are no medications, it seems, which should be causing this new reaction.

Joint pain/swelling is apparently a common side effect of Taxotere (the heavy hitter of my previous chemo cocktail). The last time I received Taxotere was July 15th. Yesterday and today, walking is difficult. My knees are buckling beneath me. There is no medication to effectively relieve the pain.

To allow for faster healing and to reduce risk of injury post surgery, I was directed to not lift anything over 10 pounds or get my heart rate up beyond what might occur during a walk, etc. Right now, my knees are throbbing and, though they seem to look "normal", they feel so swollen from the inside, that I can't bend at the knee. The pain is bad enough at full extension that that movement isn't possible either. So even if I wanted to operate against my doctor's wishes, I can't effectively move to do so!

Walking is painful. Sitting is painful. Standing is painful. Yesterday, trying to walk on the uneven grassy areas of the soccer fields to Landen's game, it was all I could do not to cry. But I can't cry. And I don't. Not in front of them, and rarely in front of others.

Yet tonight, I can't seem to stop.... I hate this. Every moment of it. I hate what it has done to me. The stress it has put on my children and family. The strain it has placed on my job and those I love and do my best to support there.

And the chemo starts again in two weeks. Six weeks of hard core, high grade, not messin' around chemo. Then 6 weeks of daily radiation therapy. Then reconstruction. Then a lifetime of follow ups and hormone suppression therapies and battling lymphedema. It will never be over. And yet I tell myself, I will live through this. My prognosis for a full recovery is still good and there are so many who can't say that. And I try to stay there...in that place of gratitude. I try to live there, most of the time. I try so very hard.

But I'm human and the darkness still exists.

Even in the midst of the Dark Places, I love a good God and I know He loves me. And I know He is a BIG God, a strong and powerful God who can handle my pain and anger. And tonight I am in pain. And I'm tired. And I am angry.

This morning I was limping around my bedroom and bathroom trying to shower and get ready for the day. This song came on and at one point I found myself screaming through tears at the top of my lungs. No words. Just the screams of a girl to her Father, begging to be spared any more of this.

I want to understand this! Yet at the same time I know it's not my place to understand everything all the time.

I know He knows the end from the beginning. I pray that even at my weakest moments, somehow, my story will allow another to feel strength that may come in knowing that someone else has been in her shoes....screaming for relief....praying for peace..... Tonight I can only think that there must be purpose in this experience.
There has to be.
No.
There is.
That is the only way I will look at it.

Re-reading this post, I am rambling. Please forgive me. Closing tonight with a prayer. Should you have someone in your life fighting a battle of any kind, feel free to use the prayer below if you'd like, personalize it to them (or yourself) and seek the One who can meet every need.

Father God, I love you. You are an amazing Father who has never failed me. You bless my life consistently with more than I deserve. You are my Provider, my Healer, my Savior and my Comforter. Regardless of my outward circumstances, God, You are WORTHY to be praised! In the midst of my pain, You are still worthy! But I bring needs in addition to my praise before You tonight. My body and soul cry out to You for relief. Rescue your daughter, Father. Please rescue me and those like me who bear this burden alongside me tonight. But if not God, come close to us. Surround us with Your presence even now as I type these words. Bring the peace that comes with Your spirit. Please, Jesus. We need you.

Until next time...

Peace in the storm: Next Steps

Back again with another update.
Starting Monday of this week I started....well...to feel like I was about 90 years old. My bones hurt, I ached all over, it hurt to sit, stand, lay down. I originally assumed it was a new medication my oncologist had me taking. He'd mentioned a possible side effect being some bone pain. Tuesday, I could barely support my weight enough to push myself up from a seated position from the couch or a chair and the pain seemed to be concentrated on the left side of my body. By late Tuesday, the fever started. I called and was seen by a nurse in my surgeons office who basically told me that there could be infection brewing but to take Tylenol to control the fever and return the following day to see my surgeon. I stayed home and slept most of Wednesday, waking to take Tylenol to control the fever. Saw Dr. Holding at 3 pm. She examined my left side which by then was red and hot to the touch and she scheduled surgery for the following day.
Thursday, I went to work, tried to get a few things lined up and taken care of (though my Assistant Principal is more than capable...I MIGHT have a few lingering control issues and Type A tendencies), then I met my dear friend Jennifer for a ride to the hospital.
THE WORST PART OF THE DAY: My last meal was at about 9 pm Wednesday. My surgery was scheduled for 215 pm Thursday.  There was a mild delay; some technical difficulties preventing proper charting in my file....and by 300 pm, I had informed all that it was time to put me to sleep or feed me ;-) The procedure started quickly after that.

When I woke up, my left tissue expander had been removed, all of the built up infection had been removed, and compared to how I felt before the surgery began, I felt like a MILLION BUCKS. My range of motion on my left side and strength in my arm and hand was much improved, the aches and pains were completely gone. BEST SURGERY EVER! The scars are a little more interesting but, again, reconstruction and time will take care of them.

Today was a great day! No pain meds needed. I slept great and went into work feeling better than I had all week. It was awesome. And yet I knew that my appt at 3 with Dr. Kahn would be one during which my next steps would be determined. More chemo? Or no...move on to radiation and hormone suppression therapy now.

We looked at every lab and pathology report I have. We discussed the feedback from his highly respected colleagues. And in the end, I was going to be right, whatever I chose. They still weren't sure. The make up of the cancer still left in my body found during my first surgery spoke to the fact that the previous chemo course had NOT killed all of the HER-2 positive cancer. It should've. It didn't. HER-2 fed cancer grows rapidly, likes to break off and hide other places and come back..months...years later.
However, another school of thought was that the Herceptin infusions I would've received for a year (every 3 weeks) could likely address any HER-2 cells left. My hormone fed cancer cells will be addressed through the hormone suppression therapy regardless and typically doesn't respond well to chemo anyway.
I felt completely informed. I had no one telling me what to do. I really was lost for a moment.  And then I thought of my children, and my sister, my church and school families.

Right now 'cancer treatment' is sort of our life. Should I allow our lives to become a little normal...only to repeat this whole thing again from start to finish...creating chaos again for my children and my families and friends..... I would always wonder if these next rounds of chemo could've made the difference for us. Long term.
So I cried with these doctors whom I have grown to love. And I let them know how much I hated to think about chemo again. But what I hated more was the thought that I couldn't live with myself if I deferred it and ended up leaving my children without a mother a few years from now based on that deferment.  My oncologist, Dr. Kahn, cried with me and assured me that it was the right decision. The peace in my heart that I felt after making the decision told me he was right.

Dr. Kahn needs me to heal another 3 weeks from yesterday's surgery prior to attacking my immune system with chemo. October 7th is the date of my first infusion of this course. Adriamycin/Cytoxan. The Red Devil. It will likely make me sicker. My hair will disappear again. Etc. Etc. Etc.
There are other risks, but we discussed them today and they are small and do not outweigh the benefits of the treatment.
The next 3 weeks will be healing and figuring out if radiation will follow this.

I am still in the midst of the storm. At times it seems unrelenting. But I have peace. I am ready. I am hopeful. I am confident and feel good about my treatment plan moving forward. It's gonna suck. But I'm ready.

Joshua 1:9 Be strong and courageous for I will be with you wherever you go.
He has proven Himself over and over again. He has kept every promise. He is for me. So there is nothing of this world for me to fear. I'm human and I have allowed my fear to get the best of me at times.  But in truth....that has always happened as I have lowered my eyes to this world and allowed my focus to be my struggles. When I keep my eyes on the One who has promised to see me through all of it.... there is nothing I can't do as He strengthens me. There is NOTHING like being the daughter of the King of the Universe.

Until next time....

Yes...but....

I came to a realization about this disease this week that for some reason had eluded me up to that point. Prior to this week I had an assumption that there would be a day, a moment, an event that would occur. At that point, my Cancer journey would be deemed OVER. Cancer Free? Check. Done. Next please!

After meeting with all of my doctors at one point or another this week, I know now, IT WILL NEVER BE OVER.

I have Triple Positive Stage 3 Breast Cancer.
Triple Positive means that any thing KNOWN to feed breast cancer cells, feeds mine. HER-2, Estrogen and Progesterone all feed the Cancer for me. This is not the case for all women but it is for me.
Since I am a woman, Estrogen and Progesterone are a constant for me. Unless suppressed or somehow disabled.
HER-2 is another constant for me and must be suppressed or disabled. It's also been the most difficult for me to wrap my head around. Below is one of the more understandable explanations I've found. (http://www.breastcancer.org/symptoms/diagnosis/her2)

The HER2 gene makes HER2 proteins. HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 25% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). This makes breast cells grow and divide in an uncontrolled way.Breast cancers with HER2 gene amplification or HER2 protein overexpression are called HER2-positive in the pathology report. HER2-positive breast cancers tend to grow faster and are more likely to spread and come back compared to HER2-negative breast cancers. But there are medicines specifically for HER2-positive breast cancers.

This week, after my surgeons and oncology team met to discuss my status and the unexpected presence of cancer cells found in my lymph nodes, I have learned that I am probably CANCER FREE meaning that there are likely no live cancer cells in my body after my surgery. This is GREAT, right?

YES.....but......
            the discovery of the cells in my lymph nodes does seem to worry the doctors a bit about any cells that could be running loose in my system waiting to find a place to hang out and grow.
The part of the fight that will go on forever for me is the fight against the forces inside me which shall NATURALLY will Cancer cells to develop and grow AGAIN and/or expedite the growth of those already there. Recurrence is what we are fighting now. And yet still, there are those who will not likely ever get to the point of "just" fighting recurrence but will be about the business of fighting present and actively growing disease for the whole of their lives. So in truth, we are extremely BLESSED. I know that someday, there will be a level of normalcy that returns. That new normal will take some getting used to but I'm up for the task. And really....for those of you who really know me...I never really fit into the description of normal to begin with....  ;-)

NEXT
The mastectomy is done. I have scars that are "interesting" but that I know ultimately will be addressed during reconstruction and/or fade with time. The scars don't bother me.
What's been recommended by my doctors at this point bothers me. 

Dr. Khan is unsure at this point of his recommendation. At the meeting of the Cancer minds, the consensus was a course of additional chemo called Adriamycin/Cytoxan with Tamoxifen.

Adriamycin carries the nickname The Red Devil or Red Death (does that sound fun or what??).


The list of side effects is long and most are those I have experienced in response to my TCHP regimen. However, Adriamycin lowers white blood cell counts sometimes to an extreme putting the patient at risk for Leukemia and also puts sometimes extreme strain on the heart muscle which can ultimately lead to heart failure. Cytoxan also suppresses white cell production and carries similar side effects to those I have already experienced. Tamoxifen does the work to neutralize my hormones so they aren't a factor in cell growth. A female with an absence of progesterone/estrogen will be in and experience all symptoms associated with menopause. The bonus is that any medication or diet that attempts to control those symptoms does so by mimicking the effect of the hormones within the body. I can't use these methods. Awesome.

When I met with Dr. Khan, I could see him truly agonizing over this decision. Can you imagine the weight that someone like him carries? His decisions could serve me well and extend my life, or expedite my demise. What a horrible position to be in!! There were moments when we were together and I was asking questions that I felt such compassion for him. I wished this away for HIM. I wanted my situation to be more black and white; for there to a stack of studies to prove that THIS was the standard of care and give him some confidence that he would be doing the right thing to either prescribe this course of treatment or to support the decision not to.
But I am special; my case unique. My young age is a huge factor in decisions at this point. If I didn't have SO many potential years left, they wouldn't be AS worried about it recurring over the course of those years. Dr. Khan, if you ever read this, I have never been an easy one to figure out. You're not the first and won't be the last of those who have tried.... but I do apologize. :-)

As our discussion concluded I could tell he was less sure of his position. He asked me to give him some time and to allow him to consult 3 of his nationally known medical oncologist buddies, provide them my information and see what they say. Based on his and their feedback, we will make a decision from there. I, of course, consented. Five heads are better than 2, right?

RADIATION

Sooooo...back in the day...I wrote that I planned to opt out of radiation if it was indicated in my situation. Now that I know it HAS been by a group of renowned experts in the field, I'm gonna have to waffle a bit. I have an appt to meet with Dr. Michelle Mitchell (KUMED) next week. Her job will be to convince me that radiation will substantially reduce my risk of recurrence and therefore potentially extend my life. If she can do this, to opt out of this treatment because it's the easy way out, would be one of the more selfish decisions I would ever make and would certainly not be in line with my doing whatever it takes to stay around for my boys. I don't want to do it. But I will.

Radiation will likely negatively impact reconstruction. It will put me at greater risk for infection post surgery. It will forever change the makeup of the skin, blood vessels, muscle and nerves being irradiated making reconstruction an even greater adventure than it stands to be without radiation. 

I was truly crushed the day I learned that both chemo and radiation were being considered in this next phase. But today, because His mercy is new every morning, I have renewed hope. Jesus has seen me through every moment leading up to this one and He is faithful to do the same regardless of the path ahead of me.

I have several appointments in the upcoming days and weeks and am hoping to have some idea of a treatment plan soon. I remain hopeful and know that God is still SO good!

Click on the link for my latest theme song, feel free to make it your own, for we all have battles we are fighting.

https://www.youtube.com/watch?v=rOVgZGzJ1kk

Until next time.....