Tuesday, June 5, 2012

Emotional Highs and Lows

Well, a year ago today I discovered my lump. A lot has transpired since that day. Little did I know at that moment what a rollercoaster journey I was going to embark on over the course of the year. Little did I know at that moment that I would never get a chance to talk to my Dad again. After spending the last 3 weeks at the hospital, and him not making much progress, I decided to take a much needed family day and go to the beach and rejuvenate with Tom and the kids just a little before heading into another sleepless week of more health questions than there were answers for. The rejuvenation process never happened that day though. As some of you may remember, I had been having pain in the side of my left breast on and off for a couple of months. My mind had gone numerous places when that pain wasn't going away. I kept thinking, "I'll deal with this later when things get back to normal with my Dad." But that morning I woke up with such an urgent feeling of needing to take this more seriously. Up until then, it had been something that would enter my mind and I could easily push aside. That morning, however, I really had this overwhelming feeling of something being wrong. As I showered and got ready for my day, I discovered my lump...an unavoidable lump that I couldn't just dismiss anymore. The only person that knew about this was Tom, and I hadn't even been really sharing it with him much either. Looking back, I feel that if I had spoken the words out loud what my mind was trying to sort through, it would have put too much certainty in something that I didn't want to exist. I didn't want him worrying, I didn't want the kids to have something else to be concerned with, and I didn't want my Mom feeling she had to take any focus off of helping my Dad recover. I sold this to myself well, so I thought. But there was no running from the truth that a cancerous tumor was growing in my body. I vowed to give it just a little more time to see if we could get my Dad stabilized first before I shared my concern and went to the doctor to get it checked out. Turns out, my Dad's condition didn't stabilize. That would in fact be the last day that he would have conversation with any of the family. My Mom and him had talked that day about him getting well, about our upcoming trip to Hawaii, and she had helped him respond to a letter Courtney had written him just a few days before. The next morning, his condition worsened, and he was getting ready to face more procedures and another heart surgery in the hopes it could help him turn around. They say God never gives you more than you can handle, but in those few days I wrestled with that truth as everything around me started spinning out of control. We lost my Dad 4 days later, on the 9th. This Saturday will mark one year with him gone. I can feel all the emotions of a year ago so clearly that I swear it was only yesterday. But then I can also reflect back over this past year and see all of the twists and turns that life has taken. Healthwise, I am doing well. I continue with periodic check ups, just finished physical therapy on my left arm (caused by very mild lymphedema), and am taking my Tamoxifen faithfully on a nightly basis. I would love to say something poignant on why all of this happened, and why the events played out as they did. But, truth is, only God knows His plan. Over the course of this year, I have just learned more that I need to learn to LISTEN to His plan. My experience has allowed me to meet so many wonderful people, reconnect with old friends, show compassion to those that face similar circumstances, and face each day with the hope that someday cancer will not affect so many. Wonderful advancements are being made, and that is exciting! Emotionally, I have good days and not as good. It is a wondeful feeling to be alive and celebrate the day-to-day life brings and mostly those are the days I have. But sometimes there are other days that I find myself wondering, "Now what?" As so many that have been through this before can attest, you spend so much time persevering and healing that you forget what it's like to live life in a carefree way. This diagnosis changes you, and normal is no longer, well, normal. A new normal isn't so bad, I just happen to be a "like the way things always have been" type of girl. I'm thankful for the opportunity to learn to embrace new things. I may just need a little practice at teaching the old dog some new tricks however. :)

Wednesday, April 4, 2012

A Month Free From Doctor Visits

It has been almost 3 weeks since my surgery, and everything is healing up very well. It feels really good to have the surgeries behind me! I will likely have only one more procedure, perhaps in early summer, to have nipples grafted since that is a separate process. The new implants have to have time to "settle" into place, and since each of them can settle differently, they do the nipple process after the fact. This is a very quick and simple procedure I am told, but the end is in sight! :)

In the meantime, I am gradually getting back into a new normal. I still cannot lift or do anything strenuous for about another 4 weeks or so, but otherwise am doing well. My hair is really growing fast, and all of my nails are returning to their pre-chemo state. Such simple things, but it's a nice visible bit of progress. I still tire easily, but I imagine that is to be expected after all my body has been through in the last several months. My next follow ups are the first week of May, and in a few short weeks I will turn 41. What a journey this last year has been spiritually, emotionally, and physically. Thank you for your continued thoughts and prayers.

Tuesday, March 13, 2012

Time for Another Surgery

I have been getting emails, texts and calls today from people checking in to see how I am doing and wanting to know an update on the next step. I will admit, after I got my last tissue expansion a couple of weeks ago, I have sort of put the upcoming surgery out of my mind and focused on "regular" life. I realized that I forgot to update everyone on exactly when my reconstructive surgery is. I will be going in tomorrow morning for the outpatient procedure, and I can't tell you how good it will feel to have another step checked off this journey.

I didn't have too much anxiety about tomorrow's surgery until today when I started to think about all of the logistics. I know all will be fine, just the whole surgery experience leaves me anxious. I appreciate every one of you reaching out to me today with your prayers and well wishes at just the right time, when I needed it most. It is expected that I will recover as well or better than the last surgery.

I will try to provide an update as soon as I am able to.

Thursday, February 16, 2012

Our Chosen Path - To Radiate or Not to Radiate

Yesterday I met with my radiation oncologist, Dr. Kang, along with my regular oncologist Dr. O'Brien. As promised, Dr. Kang contacted other colleagues and professionals in his field getting their input on if I was indeed a good candidate for radiation therapy. We had a good talk yesterday about how confident I felt about the cancer being fully removed during surgery due to the chemotherapy giving an opportunity for such clear margins, as well as the pros and cons of using radiation as a therapy for me. Leading up to most appointments, I have always had a clear vision of what I am hoping for or what direction I would like things to go. This was honestly the first time I can remember that I didn't really know what to hope for. Given the conversation from last week, it was clear to me that either path -to radiate or not to radiate- had its own set of risks. Either direction required a leap of faith on my part. While I am a devote Christian, I must admit that doing those leaps of faith is a struggle for me. I am a bit of a control freak , and like to plan to the best of my ability the best path for the future I want. I know that God will always prevail, but there is just something about me that requires an active role in the decision process. In this scenario however, there was no clear "winner" in my mind of how this should play out.

Dr. Kang said that his colleagues, as well as himself, could make a case for going either direction. It was really a 50/50 decision. While a good part of me knows that statistics are just that...only statistics and not a guarantee, it was mind-boggling to feel like I was playing a bit of a "roll of the dice game" with my life. One side *could* bring a higher risk of cancer recurrence, the other side *could* bring on a risk of cancer just by trying to prevent recurrence. This may seem extreme, but whenever he was presenting facts about what statisically can happen in 20 years with either scenario, part of my brain was occupied with flash forwards of all the life I wanted to live. I have a husband I want to grow old with, kids I want to watch take the next important steps in life, and I want to be healthy enough to play with my grandkids in 20 years. How could I know which path I should choose when there was no crystal ball to look in to learn the outcome? He asked how I felt about the facts that were presented, and I really didn't know what direction to go. I decided to turn it back to him and said, "If this was one of your loved ones you were treating, how would you proceed?" He said that given the risks of radiation effects and my age, and based on how confident they were with the margins they got during surgery, he would opt for no radiation. I looked at Dr. O'Brien, who has been just the right amount of cautious and aggressive along the way during my treatments, and she concurred. They both agreed that I would be closely monitored with MRIs and check ups, as well as starting with 5 year hormone treatment, Tamoxifen, to block the estrogen that fed my cancer. And with that, the decision had been made.

There are very real benefits to this option. I get to be done with treatments a lot sooner than expected. After just a couple more tissue expansions, I can go in for reconstructive surgery and be on my way to the "new normal". I am excited about that, but just needed some time to wrap my mind around the change in the path I had been planning to take since diagnosis. I feel good about it as of today. I would be lying if I said there wasn't a little voice of anxiety in there wondering if this was the "right" choice. But honestly, that would be there regardless of which way we decided to proceed. It's the voice of the unknown. But for now, I have taken the leap of faith and it's in God's hands. Knowing He holds the key to the future is a good place to be.

"Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving present your requests to God." Phillipians 4:6

Thursday, February 9, 2012

Gray is not a color I want to be...

I am approaching the end of my tissue expansion process in the next week or two. Last week's expansion brought the first bout of pain that I had to endure since the process started. I found I had to carefully manuever my left arm so that I guarded my muscle as much as possible. When I moved just the right way it would send a sharp pain from my breast all the way around to my back area. I took ibuprofen for a couple of days, and by early Friday I was doing much better. Dr. Burgess said this is to be expected as when the expanders get fuller and fuller, they will obviously put more pressure on my pectoral muscle, which is already in a weakened state from the tumor being there. She only had to put 50cc's in each breast this week vs. the 100 we had been doing, since I am getting close to the end of the weekly "fill ups".

The original plan was be done with that part, and then move directly into radiation. However, we met with my radiation oncologist yesterday (Dr. Kang) and he is not certain he wants to proceed with radiation. It turns out that I am in sort of gray area. Usually radiation is required when the tumor is over 5cm, mine was 4. And then the additional factor is if it went into the lymph nodes, which mine did not. Radiation carries certain risks with it, and can cause cancer on its own. Statitics show that usually by 20 years post-radiation that cancer is a real risk. In patients that are 60 or 70, this isn't as much of a factor in deciding whether they should proceed with radiation given that supposedly at that age, a person would usually live to their life expectancy by the time radiation risks would kick in anyway. However, since I am only 40, the radiation risks are, as he puts it, "very real". So, he said he is left in sort of a gray area of what to do with me. Since my cancer was in the muscle, the preference would be to radiate to really make ultra sure not even a single cancer cell remains. Being in the muscle, it is much harder for them to do tests to rule out any suspicious cells. If radiation carried no risks of its own, then he said there would be no reason not to "throw the kitchen sink" at me and give me every treatment possible. At this point it is 50/50 on the benefits outweighing the risks, so he wants to talk to some of his colleagues from various facilities and universities to get their take on how they would proceed with a case like mine. His words to us were, "They will have to convince me that radiating is the way to go for you." So...he is going to work on contacting them and will get back to me early next week about how they have decided to proceed. I am not sure how to feel about this, as I am usually one of those that embraces doing whatever it takes to make sure the cancer doesn't return. But, on the flip side knowing what all the possible risks are, there is no way to say that 20 years down the line I won't really regret pushing for radiation. This is where I need to trust that God will give them the guidance and insight they need to make the best decision they can and I will put my trust in that.

While there yesterday, the sweet nurse, Ko is her name, gave us a packet of info regarding what to expect during the radiation process. She was concerned about overloading me with too much information, but I am definitely a person who feels like "knowledge is power" so bring on the informational websites, brochures, testimonials, etc. One website she shared with me was called "An Introduction to External Beam Radiation Therapy". Because I am often asked what various procedures are like by supportive friends and family, and because so many newly diagnosed are referring to my blog, I have included a link to the video site. It is a wonderful video that answers so many basic questions about radiation, and gives a glimpse of what to expect.

http://www.rtanswers.org/treatmentinformation/whattoexpect/index.aspx


Thank you for your continued prayers and please continue to pray that the doctors will find clarity in the best way to handle my treatment.

Thursday, January 19, 2012

6 weeks post surgery updates

The last couple of weeks it has been really nice to not be juggling so many doctor appointments. It has been 6 weeks ago today that they removed the cancer. I feel great, and each day brings me closer to the finish line! Many have asked me if it feels "weird" to have no breasts, but to be honest, I haven't missed them a bit! Those that know me well know it was no secret that I considered not being large chested anymore a benefit. After enduring all of other "fun stuff" that treating breast cancer brings, this was definitely a positive thing. The expanders definitely feel different, and ultimately when the implants are in they will feel different as well. This has not been a painful part of the procedure, so I am grateful for that and the opportunity to get a "fresh" look. :)

Since the first of the year, I have been going in once a week to see Dr. Burgess so she can "pump up" my tissue expanders. The first week, she only added 50cc to each breast, but since that didn't bring about any discomfort, she has started putting in 100cc to each during every visit in an effort to sort of speed up this part of the process as much as possible to get prepared for radiation. The process is only what I would consider mildly uncomfortable for a couple of days. I am in no pain, and I am happy to just be living life as normal as possible. She had a roundtable with many professionals at Meridian Park a few days ago about my case (as well as a few other patients.) The specialists there all were in agreement in recommending radiation for me due to my age and based on the size of the original tumor. That pretty much echoed what the doctors discussed at a roundtable a few months back here in McMinnville, so it is nice to have everyone on the same page. She said it was surprising how many patients that had their cases presented by doctors that day had a tumor as large as mine. She said however that I was the only one with a tumor that size that had not had my cancer spread to the lymph nodes. Praise God!

I also had my 6 week follow up with Dr. O'Brien yesterday. She was happy to see me feeling so good, and everything is on course for a full recovery. I have lost close to 20 pounds overall, which is exciting! (and for those that haven't read earlier posts, my double mastectomy only accounted for about 7-8 pounds of that loss.) She also talked about that I would be starting my Tamoxifen hormone therapy treatment soon. That will be for 5 years. Basically this small daily pill acts as a blocker to the estrogen receptors, which in my case was the primary feeding source for my tumor. My tumor was 98% estrogen based. The main side effects of this drug could be hot flashes and possible irregular periods (since I don't know if I have officially gone into menopause yet or am just in "chemopause"). I have also read of patients who have continued thinning or loss of hair, so will just have to see what is in store for me. We will come up with a plan of exactly when I will start that at my next appointment with her in February. I will be meeting with the radiation oncologist next week to come up with a game plan for that portion of treatment.

While I was in the office, I stopped in to see some of the oncology nurses that did my chemo treatments. It was great to see them and they were happy to see my progress since the last time I saw them right before surgery. Those women will always be very special people in my life!

Thanks for taking the time to stay updated. As always, your support is appreciated!