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“I Am Titanium”

A year ago this week I was contemplating yet another mammogram, ultrasound and biopsy. I found a lump in early April while on vacation, a sore spot that I knew needed to be examined. It’s hard for me to fathom where these days have gone. So much time and energy focused on getting well and feeling better after my surgeries. Tonight, on my way home from running errands, I heard David Guetta’s song, “Titanium” and I was reminded of the strength of being a survivor. “I’m bulletproof, nothing to lose, fire away fire away, ricochet, you take your aim, fire away fire away, you shoot me down, but I won’t fall, I am titanium.” I still have pain on a daily basis, but it gets better with time. The emotional scars still rear their ugly heads and take me down momentarily but I get back up again. I am titanium.

If you are reading this wondering about your own fate and battling breast cancer or watching a loved one go through it, you are titanium. You will get through this. There will be long days, set backs and tears but you will get through this.

It’s been several months since I have posted. I pretty much quit in November after my exchange surgery because I was frustrated by the unknown. I was tired of sharing and was ready to move on. I didn’t feel like telling everyone about my silicone boobs. I didn’t initially like the results but as the months have passed, I have learned to let go of the image of what I once was. Acceptance is not a choice, it is a means of survival. My joy depends on it.  I have decided to move ahead into the next stage of reconstruction and know that with that will come more challenges but none that I can’t handle. I am titanium.

 

Today is a good day. I am reminded by this fact when I look in the mirror and see that I still have my own hair attached to my head. I can sit without pain and type with two hands and ten fingers. I can see this computer screen and know that my thoughts can be communicated very easily. Despite the surgery six days ago, the drainage bags hanging from my ribs and the constant pressure around my chest, it is a good day.

I need to remind myself that life could be much more difficult. I also know that its okay to cry and wonder if I will ever feel like myself again. On Monday before surgery, I had such high hopes of what this next surgery would bring. I am struggling once again with image issues and wondering why this is so important to me. No one else seems to care about how my chest looks, so why do I?

Hot Flash

Hot Flash.

The hot flashes have made their appearance and while tolerable, they are terrible. I now know that Tamoxifen can trigger these sweat fests. I am also learning that the time of day I take my pill, the food I eat, as well as the alcohol I drink can affect the way my body responds. The most recent one occurred Saturday morning while I was trying to get ready for a tailgate party. I’ll just say that makeup application and a hot sweaty face don’t mix. The flashes last three to five minutes and feel like I’m standing in a hot oven. Sweat beads up on my scalp, face and body. Some are worse than others. I’ve noticed too that they are more severe during the week of my cycle. This makes sense since Tamoxifen is also a hormone blocker and during that time of the month, hormone levels are surging. My oncologist says that the drug may also put me into menopause. YEAH! – not.

I have met with my plastic surgeon the last two weeks. We had not met since the week I started back to work (late June). It’s time to start planning the next procedure and finish up the expansion. Three weeks ago I reached the 600 cc mark. My shape has changed considerably and I would like to be done with the saline injections. I like the way I look in my clothes and am anxious to get rid of the tissue expanders and exchange them for more comfortable silicone. My chest feels like two rocks and internally I often feel like, or imagine, what it must be like to be in an iron lung. Pain everyday and while I could take muscle relaxers I would not be functioning. Tylenol and ibuprofen get me through most days.

My surgeon and I discussed surgery and size. My body is pushing back and the injection amount has gotten much smaller. Three weeks ago it was 100cc and last Wednesday it was only 15cc. We are finally at the point of “over-expansion” and I have another appointment to check in with him later this week. I feel like I am starting to look a little like a cartoon character (Jessica Rabbit) and my figure is feeling very unnatural. The surgeon said overexpansion is necessary if I want to be close to the size I am now. Clothing does not fit like it used to and I don’t want to go buy much because my shape will change again after surgery. I never thought it would take this long but I know I am lucky. There are many women who are unable to start reconstruction right away either because of radiation or chemotherapy treatments. So I am not complaining, just realizing that my expectations were way off.

Surgery will likely be sometime in November which will allow my skin to rest and hopefully loosen up a bit more. Third phase of reconstruction will likely be in February or March, with the fourth and final phase being done in April or May. I continue to feel blessed that I have the great medical team that I do. I truly love my doctors and think that they are the best in the area. I know that this has helped in my recovery. Even their staff members are excellent!

Tomorrow, I begin physical therapy. I am excited about this because much of my upper body strength is gone. I really noticed this last week when I tried to close the lift gate on my vehicle. I couldn’t do it and was thankful for the automatic lift button! I have bought some weights and hope to learn some new routines tomorrow. I hope to be able to get ahead of what is coming in November and through exercise be able to do more after the next surgery. Also on the list for the week is a meeting with a nutritionist/dietician.

Two Weeks on Tamoxifen

Two Weeks on Tamoxifen.

It’s been two weeks since I began taking Tamoxifen. I have yet to experience the dreaded side effects and I keep praying that I will not. I’ve had a few hot moments that I thought were hot flashes from the medications but considering that the weather has included record breaking heat with daily temps over 95 degrees, I have to think that some of what I was feeling was what everyone else was feeling too! I am more tired but that is probably due to lack of sleep which I am still having issues with. Note to self: My mom had to take sleeping meds while on Tamoxifen – check with dr to see if there is a connection.

Reconstruction was going well. On June 20, I posted that I had had my first saline injections of 25 cc on each side. This has been followed by another 25, then 50 and 50,  then 75 and last week we maxed it out with 100 cc of saline on each side. I was told that the Dr. began with 50 cc in each tissue expander before sewing me up in surgery. I’ve got a total of 375 cc on each side which is about the equivalent to a can of Coke in each expander. If only that Coke can was standing on my chest rather than laying down horizontally under my pectoral muscles. I’ve got what I call the side boob. It’s okay, laugh. I do out of frustration and to keep from crying. This cancer stuff sucks. I know that nothing is ever going to look like what I once had (they weren’t big, but they were symetical and they were real). I had hoped at least that this process would make me feel more normal but in exchange for that I am in pain daily.

I put on a running tank the other day – the kind with the shelf bra – and it no longer fits. How the heck does that happen? And then I realize its the side boob that makes the shirt unbearable and too tight in the chest. In addition, the tissue expanders are rock hard. I keep hoping that this will all go away after the next surgery when they switch out the expanders for the real implants. I keep hoping that this will all be worth the effort but I’m not convinced anymore. All day today, it has felt like someone was poking me with a fork right along the lower edge of the expanders. I have been excited the past few weeks because I was making progress and my skin was expanding. This week has been different and I am finally understanding why the Dr. said I may be smaller with implants than before surgery. My skin has not moved much since last week’s injections. It is tight and shiny and painful. The Dr. told me that my skin would tell me (and him) when enough was enough. I fear that we are getting close, if not already there. He said he hoped to get me to 500 cc and now I think that was wishful thinking on his part and mine. At this point, I just want the surgery to switch these out, eliminate the side boob so I can wear a decent padded bra and get on with life. The whole point of reconstruction is to create an illusion of your former self and when the magic trick falls short of the expectation, it hurts the soul.

This isn’t about me feeling sorry for myself – far from it. These are just my thoughts about this whole process that is a giant frustration on so many levels. I have been an open book about my experience and I intend to continue for my own sake and others who seek unedited information. I won’t sugar coat this experience. Breast cancer is not some philosophical journey or path. Breast cancer is an ugly nightmare that is lived daily by an increasing number of women and men.  This is the place for me to share my thoughts. It allows me to “get it off my chest” so that I’m not constantly wearing these less than happy emotions on my face.

A Weight Lifted

It has been a very long day. Popular (outstanding) doctors are busy, which means that patients like me usually wait to see them. Today it was more than an hour in each of the two appointments that I waited to be seen. Waits that can bring a person to tears because of the drama being created in the mind. When you are waiting for test results that will determine the course of your life in the near and distant future, delays can make your imagination wander. Bad news comes before noon and at the end of the day…my appointment was for 10:20 and it is now 11:30…they must be taking longer because my case is complicated…they asked if I had a port because they think I will need one…stop thinking this way…the negativity is clouding my brain…must think positive thoughts and trust my gut that all will be okay.

We sat and waited some more and my mom, who is back in town for a few days, rubbed my back while I tried to calm my inner demons and fight back the urge to let the floodgates open and the tears flow freely. The past few days have been good but the nights, when the “what ifs” creep into my thoughts, have been full of silent tears.

My oncologist entered the room and I have my oncotype DX report read to me.

I have to repeat back to my doctor, “Did you just say, I don’t have to go through chemo?”  His answer was a resounding “YES!” He followed this with my breast recurrence score of 16 out of 100. For patients in this group who are like me with node-negative, ER-positive, Stage 1 or 2, the recommended treatment is 5 years of tamoxifen. For patients who had a Recurrence Score of 16, they had an average rate of distant recurrence of 10% during the 10 years following their breast cancer. With this number, chemo does not make sense for me.

The floodgates opened, and tears of relief flowed. I am lucky today and feel like I have dodged a big bullet. The surgery was hard. Tissue expansion is painful – every day. But I have been more afraid of the infusion chemotherapy than anything else. I will begin taking tamoxifen in about a week and see how this treatment goes. Tamoxifen is an anti-estrogen drug and has been used for more than 30 years to treat breast cancer in women and men. It reduces the risk of recurrence of breast cancer attaching itself to another part of the body. Yes, there are side effects that can include blood clots, strokes, uterine cancer and cataracts. The less serious ones include hot flashes, joint pain and leg cramps. I am not worried about taking this and know plenty of women who do so and are free of side effects.

To all of you who have prayed for me and healing: THANK YOU! GOD IS LISTENING!

My mom and I had a quick lunch break and then sat in another waiting room. I received another 50 cc of fluid in each tissue expander and while last week’s didn’t bother too much, today the pressure was again painful. By my counts, I have seven weeks to go before I can schedule the next surgery to switch out the expanders with the real implants. Today, I got to see what the differences are between saline, silicone and the new “gummy bear silicone gel implants” as well as the tissue expander. I now understand why I have the discomfort that I do. The tissue expander looks like a round plastic bag with rigid edges. It is not smooth but has a texture and is slightly opaque. It reminds me of a deflated balloon and as saline is added, the wrinkles fill out a little bit. Tissue expansion is a process much like how a woman’s stomach grows with a pregnancy. Each week, the baby and mother’s stomach grow and change in appearance.

Several of you have asked about the reconstruction process and I will speak to this more in the next blog. For now, if you are curious and want to learn more, I have found a great site that educates about reconstruction after breast cancer. Full disclosure: this site contains before and after torso photos of breast cancer patients. If you are under 18, talk to your parents before viewing the site: http://www.breastreconstruction.org/index.htm It is designed to give patients and those who care about friends or loved ones going through reconstruction from breast cancer some education and advice. I think that you will be amazed by what science and talented plastic surgeons are able to recreate.

 

 

 

 

 

Mark 4:39

This has been eating at me since Sunday. It was the first church service we have attended since the Sunday before surgery. I know that I have been on many prayer lists and chains and for that I am very thankful. I truly believe that there are times in your life that if you are open to it, a message will be there trying to get through. I’ve talked to God daily. Some days cursing his name and feeling very much like Job did.

“Night pierces my bones; my gnawing pains never rest. In his great power God becomes like clothing to me; he binds me like the neck of my garment. He throws me into the mud, and I am reduced to dust and ashes. I cry out to you, O God, but you do not answer; I stand up, but you merely look at me…I know you will bring me down to death, the place appointed for all the living.”  – Job 30:17 – 23.

Other days, I pray for strength and I get it – sometimes too much so that I am unable to wind down and go to sleep at night. I’ll admit that there are many Sundays that I have sat in the pew, listening to the service but not really “listening”. This last Sunday was different. The message seemed to be all about me, and I have been humbled by it and continue to be haunted by the words. The first lesson was about Job 38:1-11, the second was 2 Corinthians 6:1-13 and the third was Mark 4:35-41.

The story of Jesus, calming the storm was the focus of the sermon. “Jesus, asleep at the stern did not wake when a furious squall came up and broke over the boat. The disciples woke him and said to him, “Teacher, don’t you care if we drown?” He got up, rebuked the wind and said to the waves, “Peace! Be still!” Then the wind died down and it was completely calm. He said to his disciples, “Why are you so afraid? Do you still have no faith?” They were terrified and in great awe asked each other, “Who is this? Even the wind and the waves obey him!””  – Mark 4:35-41

Faith in Jesus does not eliminate the storms from our lives. Those storms strengthen us.  I’ve always known this but I needed to hear it.

God does not make people sick. He does not create chaos for us. Cancer has been my storm for years. When my aunt was diagnosed, then my mom and then when I had my first surgery in 2001, I prayed that I would never get cancer. I prayed that my needle biopsy on April 30, would again be benign. I’m young with two daughters still in school. God surely wouldn’t allow for me to have cancer now, maybe later – years from now, but not now.  God does not eliminate storms.

The biggest storm of my life began on May 3, when I received my diagnosis. I’ve prayed for the strength to get me through. I’ve prayed for the best doctors and surgical team who would cut out all the cancer. I’ve prayed for peace and silence in my brain to stop asking “What if?” regarding my cancer. I’ve prayed for my own healing. It has been hell, but I know that my faith must not waiver. I will have good days and bad days with and without pain. He will help see me through this. I pray now that I can get through the reconstruction process and that I can live a long life free of cancer. I pray that the OncoType DX test will show that chemo will be of little value to me and I will not have to be injected with poison. This stage is difficult. I continue to pray for strength to get me through the day. It is a lot of waiting and wondering “What if?”  Whatever the result, whatever course of treatment I must endure, I will get through it remembering “Peace! Be still!”

Sunday, I got the message. I now know that that set of footprints in the sand was not my own. I was/am being carried.

 

Reconstruction Begins

It has been a good week so far and I am keeping my fingers crossed that tomorrow, the streak will continue.

Monday, I met with my cancer surgeon to go over the pathology report. My cancer was staged at IIA and based on this, if I have to do infusion therapy (IV drug cocktail) that it will likely be the shorter of the two regimens. For patients like myself with a small tumor, clear lymph nodes, surgery and high estrogen/progesterone receptor positive cancer, I would have a 3 month series of chemotherapy resulting in 4 infusions (every three weeks). I will have to take some sort of hormone treatment regardless of the infusion therapy. My surgeon also suggested that I consider the Oncotype DX test and discuss it with my oncologist during my first visit tomorrow.

The test is important because research has shown that for early stage breast cancers like mine, only 4 in 100 women will benefit from infusion chemotherapy.  That number blows my mind. The test is expensive, but chemo is more so, and the risk to the patient having that poison dripped into their bodies when the result would be the same, may not be worth it. For 30% of patients like me, it can change their course of treatment. The test will help my oncologist and I determine what treatment is best for me and will calculate the probability of my cancer returning in the next 10 years. For more information about this test, I’ve included the link to a short, but very informative video: http://www.genomichealth.com/en-US/Company/LabVideo.aspx

Today, I had another doctor’s appointment with my plastic surgeon who has cleared me to go back to work next week. Yeah!!! He also decided that the infection on my left side was cleared up and it was time to start the saline injections. This was a little scary for me at first and of course, I had to ask a lot of questions.

“What if you miss the port and puncture the expander?” That would be a big problem and to avoid that, the dr. uses a magnet to find the port under my skin that is a little bigger than a quarter. Through this, a long needle (at least 1 1/2″) is inserted through the port and 25 cc (2 tablespoons) of saline was placed in each tissue expander. While this did not hurt initially and I barely felt the needle stick, it began hurting on the drive home. It’s hard to believe that little amount of fluid would cause any pain and tightness but it does. Ice, ibuprofen and a muscle relaxer helped get me through the afternoon. Next week, they will begin weekly injections of 50 cc and so the reconstruction begins.

 

 

 

 

I went back to the plastic surgeon’s office yesterday to have them check the red area on my left. The antibiotics are working because it was smaller. However, I now have fluid/swelling collecting on the right side but was told that is normal especially after the tubes are taken out. I am icing a couple times a day and that has provided a lot of relief.

I also have been experiencing weird tightness and prickly pain. I keep wondering if it is the stitches poking me in my arm pits or why I have this burning/cutting sensation there. Thursday night, I also started experiencing hypersensitivity on my chest. Pulling my shirt away from my body provided tempory relief. I was told yesterday that this is all part of the healing process and that as my nerves heal, I can expect sensations described above. This is a little concerning since I want to get back to the office. I can just picture myself sitting in a meeting, tugging at my shirt because I feel like my skin is on fire. Or having to carry one of my “hugs” pillows with me because the tightness sensation is only relieved by putting pressure on that area. Enough pressure that I’m white knuckling it. I was told that after a month, this should all go away. Maybe this is why I have not been released to go back to work yet. I have to remind myself that I am still healing and that the pain I have will go away. Another plus is that if my skin is hypersensitive, then feeling might just be restored, so I don’t complain to loudly and have tried to stay off the drugs.

I had to drive myself to the appointment yesterday which I was pretty excited about. It has been two weeks since I was behind the wheel and lots has changed. It hurt to drive. Steering was harder than I thought it would be.  I also place a pillow between me and the seatbelt to just protect my chest. A person doesn’t realize how much they use their pectoral muscles to do simple things like driving. Remember, those muscles are attached to muscles and ligaments in your arms. When those get damaged, it is a lot harder to get up from a chair, pick up a gallon of milk, or open a jar of pickles or peanut butter.

Trying to move your body once you’ve gotten in bed is also difficult, because you often use your arms to help you without thinking about it. Getting out is also difficult so you learn to literally roll out of bed! This is all part of the new normal but I’m not complaining, just letting you all know what patients like me might be experiencing.

I also received the final results from the pathology report and my cancer tested positive for being both estrogen and progesterone receptor. This means that my type of breast cancer feeds on these two hormones. The more it gets, the more it grows. I am very thankful that I tested negative for HER/2Neu. This type of cancer is much harder to treat. I am thanking God for the hormone positive type because the doctors know how to treat it. The majority of cancers are estrogen positive only. With both ER/PR (estrogen receptor/progesterone receptor) 65% of breast cancer patients have this diagnosis (this is me). Drugs like Tamoxifen are often used to treat this form of cancer and do a good job of blocking the receptors on the cancer cells essentially shutting it down. I am praying that my form of chemo will be just the pills and nothing else. Tamoxifen does not cause you to lose your hair and most people tolerate it well. The standard regimen for this type of chemo is 5 years. My mom did well on it 15 years ago. I’m keeping my fingers crossed that I will do the same if needed.  For those of you praying, I ask that you pray that the cancer is out of my body and that I will not need infusion chemotherapy. That the road ahead is about healing completely with little pain or further damage to my body.

Double Whammied

Everything was going great until this whole breast cancer thing

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