Tuesday, March 27, 2012

Our journey ended safely for our four car caravan and we arrived at Fort Myers Beach Saturday afternoon. Sunday was our first full day and it was time to start making memories. What better way to remember your vacation than a trip to the ER?  Well, as all good stories start, Brad was heard to say "Hey guys watch this!"   All of the sudden I heard everyone asking him if he was OK. I looked up and my husband surfaced from the shallow end of the pool holding his bloody head. LOVELY!  We hadn't even been in Florida 24 hours! Well, in his defense he actually was not diving but started out doing a belly flop and at the last minute curled up running his face across the bottom of the pool. It resulted in a few abrasions and a head laceration. Keep in mind he is 6'3'' and that end of the pool was 3'. Thank goodness he wasn't diving because it's pretty certain the outcome would have been much different. I felt he needed stitches as did my sister. Since we had a delicious pork loin ready we quickly ate then headed for treatment. Let me just tell you never to get sick at Fort Myers Beach on a Sunday. What a fiasco. The care there left a lot to be desired. After a CT of the head and neck and a tetanus shot we were on our way. I was not a happy camper, no glue and no stitches. Unbelievable!  Oh well, he's a guy so he didn't care. After all scars equal great stories and believe me this one will go down in history!

After a couple of great days one of the girls in our group got an upsetting call. Before we left  she shared that her mom had an abnormal mammogram and was to have a biopsy on Monday. It was Wednesday when she got the news...the biopsy was positive. It just seemed no matter how hard we tried we couldn't get away from those dreaded words BREAST CANCER. Another friend was just a few blocks down the beach one month post-op from her bilateral mastectomies and really struggling emotionally, I am scheduled for mine April 3rd and was on a mission to put my diagnosis out of my mind and relax before my treatments begin, now our friend's  mom was newly diagnosed. It was like groundhog day, we just had to keep reliving it over and over. We shed some tears and some hugs then  all took a walk on the beach to watch the sunset. As we headed back another friend looked down and what did she see but a piece of seaweed all by itself in the shape of the breast cancer ribbon. We all just stopped and looked in awe. I got chills-it was a sign.

The week progressed and all was good. And then...Ahhh!  Back home again in Indiana! But wait, something was wrong with this picture...  did we really drive 22 hours south for 85 degree temps only to learn it was also 85 at home? Well my sister  made it seem all better when she said  "the pina coladas just don't taste the same without the waves and the sand!" Oh good, now we knew the drive was worth it!

Now that we are home it's become crunch time for me. The countdown is on, so much to do so little time. Today I made a flying trip to Indianapolis for some things. I posted a photo of the cute little camisole I purchased to wear after surgery. I will have drains in my chest that will need supported. The more drainage the heavier they get. It's tough to see but there are two little pouches that velcro inside to hold the drains. I purchased two so I will always have a clean one. Never in my wildest dreams did I ever think I would have to spend $100 to get a pair of PJ's for after surgery. Oh well. They also come with nice soft inserts so if I have company and am self conscious I can pop in the inserts for a quick fix. The funny thing is the inserts are almost twice my normal size! That will be just as obvious as no boobs at all!

So the old saying goes "God doesn't give you more than you can handle." Well just to keep us going He has interjected some exciting things this week. Monday was the end of the season basketball banquet and Kinsey won the perseverance award. After 10 months of unexplained headaches and fatigue, a broken leg, bone on bone bruising and a sprained ankle she certainly earned it!  Brody received a letter stating this Friday he will be inducted into the National Honor Society. We are extremely proud of all his hard work and good grades! We can't wait to celebrate with him!

Thursday, March 15, 2012

Patience is a virtue!  After a very long week of waiting for test results and hours spent in physician offices finally the plan has come together!  Surgery on April 3rd and both breasts are going!

I was a bit apprehensive prior to this final appointment with the surgeon. It is obvious Brad is struggling with my decision to have both breasts removed. Two physicians have suggested it, now it was time to see what the surgeon himself was thinking. He asked about my BRCA testing and I explained it was negative. He immediately stated that although that is the case it would be reasonable to consider taking both breasts. The cure rate would be 98% and my mind could be free of the worry of recurrence. As he stated in our first meeting he doesn't just treat the patient and their cancer he treats their head too. If the patient has feelings regarding their treatment he likes to take that into consideration. I told him I am on board with that idea and would really like to move forward with bilateral, also that the oncologist and the plastic surgeon both stated it's a very good idea.  He explained that I could just have the left one removed now and go back later for the right or do both now. The only benefit to that would be that should there be any healing issues on the right side they might hold up any chemo or rads that may be needed. If I wait to have it off we only need to worry about the cancerous side. However it's another surgery, expense, recovery time etc and there really is no reason not to take both now. I was appreciative of him giving me a choice but doing it all at once is just best for me. He said that his entire focus is on getting rid of the cancer so by taking both we can feel more confident that it's gone. He also made me feel at ease when he stated that he favors waiting to reconstruct and not doing it immediately. First because it allows the patient the time to deal with any further treatments that may be needed and secondly if reconstruction is being considered it is much easier to do that and obtain comparable results. I was all over that idea as I'm still not completely sure about reconstruction.

He plans to do a modified radical mastectomy on the left-take the whole breast and check the sentinal node. If it is malignant then he will take more nodes.  On the right the plan is a simple mastectomy-meaning he won't check lymph nodes. Both will be done with a skin sparing technique so I can more easily reconstruct later. Should I decide against reconstruction then that extra skin can be removed later. Game on!  We did the paperwork, I got my pre-op labs drawn and was quite at peace when we left the office. Brad left a bit before me to get back to work and the Dr. caught him in the hall and told him I was doing the right thing! Brad and I later talked about how happy we are with this doctor and that it's a big relief to be so close to home.

My prayers were answered in that all my doctors and I agree on the plan and it's all figured out before our vacation. We are heading out in the middle of the night tonight for Spring Break. Hopefully this next week will bring Brad , the kids and I the relaxation we need to come back refreshed and ready to battle the beast!  For now our Journey is taking us to Fort Myers, Florida!!!

Wednesday, March 14, 2012

I was set up to see oncology tomorrow but the nurse practitioner did me a favor and called about my genetic testing. Results came in and I am negative!  A big blessing!!! What this means is that I don't have to have the right side removed and my risk factors for ovarian cancer are not as high. The best part is that although I have cancer, therefore putting my family at higher risk, they probably aren't as high risk as if I had one of the two BRCA genes. The nurse practitioner did say that in regards to having the right also removed it would still be a very reasonable decision. I was honestly glad to hear that as the plastic surgeon said his personal opinion was to remove it at the same time as well. As much as I would like to save one side, the fear of recurrence would always be in the back of my mind. This cancer didn't show up one year ago and now is very large. A recurrence could happen just as rapidly and I could be in the same situation again soon.On the flip side  I could go the rest of my life cancer free. I would remind all to remember that mastectomies are still not 100%. There can be cancerous cells left in the tissue of the chest wall and cancer can come back in that tissue or even under or around implants. However, the statistics are dramatically decreased.

Among the women I have spoken with who have been through breast cancer or those who have family or friends who have experienced it, the opinions are overwhelmingly in favor of not only mastectomy but bilateral. So many who started with lumpectomy ended with mastectomy and those who had unilateral many ended with bilateral. For those who haven't been faced with it many tell me they would choose to have both removed as well.

Brad said he would support my decision either way but he is obviously struggling with the idea of both  breasts being gone. I would completely expect that-it's normal. Getting him to understand how difficult it is for me is even harder. I'm really trying to weigh the pros and cons, keep an open mind, and hear the opinions of all my doctors. Naturally I have my own thoughts on the subject, but I'm trying not to allow those to be so strong they immediately eliminate something that in the end may be a good choice for me. My opinion has been that I'm OK with aggressive forms of treatment if I feel they will result in cure. Because I'm only 45 my risk of recurrence is higher, and I want not just quantity of life but quality. Being faced with a recurrence that could be prevented is huge! Thankfully breast cancer treatments are much more advanced and effective. Even 10 years ago my options would have been fewer and my chances of cure lower than they are now. There are small blessings even in rotten situations!  For those I am most grateful!!!

Thank you all for the prayers and the messages that keep coming my way. I truly believe they give me extra strength  and patience that I wouldn't have on my own!

Tuesday, March 13

Today Brad joined me to meet the plastic surgeon and learn all we could about reconstruction options post mastectomy.  I have been doing my homework. Brad on the other hand has just heard the tidbits I have relayed to him and  even when I tried to talk about it he casually commented that I should reconstruct but wouldn't really explain his thoughts.

This appointment was the one filled with the most emotion, at least to this point. It's difficult to describe what exactly I was feeling during that hour and a half visit. Fear-so much is still unknown (gene results, stage of the disease, treatment plan).  Anxiety-hoping I make the right decision for me. Humility-as naked photos of my bust and belly were taken for the surgeon's purposes to attempt to match my original shape and size. And lastly, sadness that I was having to face this and put my family through it as well.

The surgeon was wonderful!  Very personable and thorough. He started by explaining the expander/implant option.  A plastic form is placed at the time of the mastectomy with a port for injecting saline in small amounts over the course of time to expand the skin on the chest to ready it for implants. This can actually be left in instead of the implants if it is comfortable and has an effect the patient is happy with. If not then it is taken out after several weeks and either a saline or silicone implant is placed.  First know that almost all implants will need replaced or will have other complications requiring more surgeries at some point. He made that extremely clear. Also the end result is not as cosmetically pleasing especially over time.  The saline, should it rupture, "goes flat" fairly quickly. The silicone is designed to rupture and ooze, not drain. Therefore it's suggested that periodic MRI be obtained to check them. Many women don't know they have an issue until they have symptoms. The silicone are more natural in appearance and shape. Either may be rejected by the body but it's not common.

In my research I found that if the patient needs radiation it is suggested to wait on starting reconstruction with expanders. My doctor said it can be started immediately because there is a risk of it not working when rads are involved weather you delay or do it immediately. As you can imagine the skin has at least some degree of damage and usually is not as pliable, plus the circulation to the tissue may be affected. He said should I start the process and it not work we can start all over or take them out and be done. The other issue is that if I would need chemo things would get tricky because steps of reconstruction have to be scheduled around how well my immune system is handling chemo. Keep in mind I won't know for sure if I need none, either, or both until my final pathology comes back after surgery. Therefore it makes the decision making process quite difficult.  If I choose immediate reconstruction that happens as soon as the general surgeon leaves my side so I have to know before even scheduling surgery.

The next option was the flap procedure. This is very overwhelming and there are many options. This surgeon offers taking tissue from the tummy or the back-fat and muscle that has blood vessels that would feed and heal the new tissue. If I need one side I lose one tummy muscle, if I need both sides two muscles. This would increase the risk of abdominal hernia in the future, but I would get a tummy tuck out of the deal. Most info I read said these procedures, known as various types of flaps, give the best cosmetic effect, look and feel more natural, and look better for longer periods of time. Also, they are your own tissue and not a foreign body. It's not common that the body reject an implant but it can happen. As appealing as this all sounds it is NOT for me. Brad couldn't agree with me quickly enough. The risks of infection or surgical complication are much greater. The surgical time is increased by hours and the healing time is much longer. Because of all the lifting I do at work I wouldn't want to weaken what tummy muscles I have left, and although fat, my tummy doesn't look too bad. Ending with a huge abdominal incision wasn't appealing to me at all. It didn't help that one look at the photos of patients going through the process was almost more than I could handle!

At just over an hour into the visit I was feeling like mush. Had to put my feet up again and regroup. GRRR!  I never used to have that issue but as I've gotten older it is hard for me to deal with health issues with me or my family without experiencing what is called a vagal response. You nurses understand that. I got it together and we moved on.

Big question- if not completely decided on reconstruction can my surgeon attempt the tissue sparing technique so that I could reconstruct later? The answer was yes.And even without that I can reconstruct later. If I would decide not to reconstruct then that extra skin could be removed at a later time. He really feels that it's OK to start with expanders immediately even if I need radiation. I am very hesitant. Too me there is the potential to have to juggle too much should I need rads or chemo. Also, it's dealing with increased pain at the same time as possibly dealing with other therapies. If my area were small I could be swayed to start immediately. However knowing the size of the area I have no idea if they can even do the skin sparing technique. He said that if the surgeon has any question at all he takes all that he can. Then of course it is important to remember  that how I feel right now can certainly change. Depression and feelings regarding poor body image etc are fairly common in women experiencing this, especially later.  I have spoken to so many and those who have chosen not to reconstruct at all have been happy with their decision. They are a variety of ages.

Near the end of the conversation we discussed the right side. He asked how I felt about it. Of course I'd love to keep it if I knew it would be fine.  Yet there would be a great piece of mind just taking both and knowing that then my chances of recurrence would be very slim. I didn't ask his opinion, he volunteered it. He said if I were his family member he would take both now and have it over, plus  if I would reconstruct that makes it much easier to match both sides. The gene testing may make my decision for me. However if I don't carry the gene I would need to have a frank discussion regarding the right side with the surgeon doing the mastectomy. GRRRR, why can't something be black and white???

We left and Brad headed to work briefly and I cried some on the way home. Hmmm, that's becoming routine. When he got home he gave me a big hug and said after all the info he wanted me to know he is fine with whatever I decide, that it's my decision and all he cares is that we have many more years together-that it's what is on the inside that counts. Of course I cried again!  That took off some degree of pressure as prior to the appointment he was pretty clear his opinion was I should reconstruct. I think visually seeing all the photos of options and stages of the process helped him understand this isn't as easy as TV makes it sound. Not to mention, although the whole process puts you in awe that modern medicine can accomplish amazing things, the end result is not the same and comes with significant risks. So now to sit and think for a bit and try to have an answer before I see the general surgeon on Thurs.  I am trying to just put it into God's hands and hope He whispers an answer because this decision is quite difficult for me. I'm feeling that I can't really go wrong by waiting on reconstruction and finding out more info and considering it longer. However I can go wrong by making a decision when I am so torn. I can always do it later! Thinking...thinking... thinking

Tuesday, March 6,2012

So anyone who knows me is well aware I can be pretty ornery. And if you know my family you know I can't hold a candle to them!  I figure if I'm sharing all this personal info with all of you then you may as well get the craziness that surrounds my Journey. After all, I'm counting on it to help keep me going.

I work night shift and sometimes it's tough to get up and get moving with the normal people in this world. Last night was a long night and I was in quite the funk when I got up today. Decided it was time for my daily Diet Coke run. While I was at the store I got a text. There have been many funny ones. To save face for those sending them I won't use names, but I have to share. It was from a family member who was over due for her mammo -I had been reminding her. Her message was "I got my boobies smooshed today."  I lost it!!!  Just the pick me up I needed. So when Brad got home I read him the message all excited that someone else had gotten checked out. He too started laughing and said, "You are gonna save the world two boobs at a time aren't you?"  Well, I wouldn't go that far but whatever it takes!!!

Our conversations with our kids have always been very open. Dinner time discussions prove quite interesting as there are very few secrets. This particular evening  Kinsey's boyfriend fired one question after another  and I answered all of them honestly. Then he openly shared a story of the mom of a fellow athlete he knew.  All of the sudden Kinsey looked at me and so seriously asked "So are you having just one side off or both?"  I told her at this point just the left unless the gene testing is positive. She quickly responded "OK, just needed to know if I could call you uni-boob!"  I lost it!  Yep, that's the kind of crazy humor my family brings to these situations. Maybe some would be offended by such a comment but I couldn't help it, I cracked up and Kinsey quickly followed. (Now she will probably kick me for putting that in writing but oh well.)  By making light of stressful situations my family has been able to climb many mountains they would have otherwise likely tumbled down.  Besides it is the best medicine and by far the cheapest!!!

The other day a good friend texted.  "You'll probably kill me but if you are getting a new boob then I think they should perk your other one up while they are at it.  I thought that might make you laugh!"  First let me say, that that is part of the plan according to all my doctors. If I choose to reconstruct the girls have to match.  As usual I read the message to Brad. His response, " You don't need perked up!"  I suddenly realized I love my husband even more than I thought I did!  For those fellas who gave him grief that he "builds bridges and doesn't do boobs"  he really does!!!!

On a much more serious note I do feel perspective helps a lot. My good friend Lana talked about it recently in her blog. As I type all these sillies I think that I really don't have things all that bad. Each time I turn on the TV there is another casualty in the war, another life lost to bullying, or another tornado ravishing this great country of ours. My thoughts and prayers go out to all those people who really have something so very difficult to overcome!

Monday, March 5, 2012

There is nothing happening this week-just waiting on test results and appointments. Therefore I thought it would be a good time to list some basic information about breast cancer. My information has come from the American Cancer Society website, Breast Cancer.Org, and books authored by Dr. David Chan and Dr. John Link that came recommended by one of my doctors, as well as my doctors themselves.

-Women in general have a 1in 8 chance of having breast cancer
-75-85% of newly diagnosed breast cancers occur in women who have no family history
-Breast cancer that is hereditary tends to happen at a younger age
-If a relative also had early breast cancer the chance of the BRCA gene (breast cancer gene) being abnormal may be as high as 80%   (I will mention more about the gene at a later time)
-Almost 10% of breast cancers are not seen on mammograms
-If you have a first degree relative (sister, mother, daughter) with breast cancer your risk is doubled
-If you have a relative (grandmother, mother, sister, aunt) who has had breast cancer before the age of 50 your risk is higher
-If you have one family member who has had both breast and ovarian cancer you are at higher risk
-If you carry the gene you have up to an 80% chance of having breast cancer
-If you started your periods younger than age 12 your risk goes up
-If someone in your family had cancer in other glandular organs-especially pancreatic, colon, or thyroid your are at a higher risk
-If someone in your family had cancer in both breasts this increases your chances
-If you entered menopause at a late age-greater than 55
-Use of hormone replacement therapies has been associated with breast cancer
-If you had your first baby late in life

Many risk factors are beyond our control but there are things we can do.
-Eat nutritious meals with lots of fruits and vegetables and low in fats and processed goods
-Exercise regularly
-Drink alcohol in moderation. Once diagnosed with breast cancer I learned that three or more drinks a week can increase your chance of recurrence by as much as 30%. That's huge!
-Do monthly self breast exams
-Have a yearly exam by your doctor
-Start yearly mammograms at age 40. If you are high risk or have a family history talk to your doctor. He/she will start your screenings at a younger age.
-Be open to follow-up testing-MRI or ultrasound if your doctor suggests it
-If you are having your children consider breast feeding-longer periods of time are better!
-Do not smoke!

Many of things are common sense and we all know them, the question is do we do them???  :)

Wednesday, February 29, 2012

Started off my day with a trip to the vet with our furry child Molly. The support I/we have received has come in so many fashions but sometimes it comes when you least expect it. After checking Molly out Dr. Lisa asked is she could pray with/for me.  My response: absolutely!!! She said the most beautiful words and asked God to not only heal but to give us strength for the road ahead. It was very moving and timing couldn't be better, in a couple of hours I would be seeing my oncologist for the first time.

I arrived at the oncology office and the initial feeling was overwhelming!  First I saw a mentally challenged woman wheelchair bound wearing her turban. Next a frail, sickly woman leaving, and finally another with her head covered, obviously receiving chemo. I was in an oncology office and would expect to see this, but it was just too much. At one point I actually thought I was going to throw up.  What a relief when they finally put me in a room to myself so I didn't have to stare cancer in the face-literally! I needed time to myself to collect my thoughts.

My visit happened in stages so I was able to check my messages. I breathed a huge sigh of relief when I learned that my friend who had been in surgery for her bilateral mastectomies had done very well. The best news of all was that her lymph node came back clean-no cancer!!!  That was the good news we were all hoping for! Now she could move on with her journey being considered in remission!

I was told I would be coming in for just the gene testing. I soon learned the oncologist did have time to see me so I could get my meet and greet appointment out of the way too. Perfect except I had told my family not to join me because it was just a blood draw. Dang it!  I quick texted Brad. He was on campus and couldn't get to me in time. Next my sister. As luck would have it she was able to leave work early and join me.  Met at length with the Dr. who was very thorough with our family history. She wanted names, ages, types of cancer, to know if they were still living or deceased. She was amazed that we have several first cousins who have had cancers and at young ages. This was a big red flag.  Just to get you up to speed I had an aunt with breast cancer, she has a daughter with it. I had another first cousin who died of breast cancer, a first cousin who had colon cancer and her mother, my aunt who had a form of skin cancer. My dad has had colon and skin cancer and his mom, my grandma has had skin cancer. Dad had a first cousin who died of ovarian cancer. YIKES!!!  Obviously gene testing is a must for me!

The doctor went over each piece of info thoroughly and said that back in 07 and 09 there was a suspicious area in my left breast. I remembered the every 6 month mammos but was thinking they were for the area in the right. When the radiologist had called me back this time she started by saying "here is the area we have been watching in the right. It's unchanged. "  Hmm, that was confusing. At any rate it sounded as that area in the left must have been unchanged after that. Things are getting curiouser and curiouser!  Next she moved on to my MRI. Also very concerned about the large size of my area but did state she has seen many that large. Probably the only new piece of information was she had the pathology report in hand-the  first and second opinions.  It raised question in the area of grading.  Cancer can be staged and graded. Grading can happen with the initial biopsy but most of the staging happens later.  Locally the grade was listed as intermediate.  Out of town listed it as high grade. This was a concern because that can indicate the cancer is spreading. That must have been what the nurse from out of town referred to when she called the other day and said they were concerned this may now be invasive.  Lovely!

 At any rate the doctor was very compassionate and very helpful and she really stressed she likes to treat the whole body-body, mind and spirit.  I liked this! She stressed how mind over matter and positive attitude drives so much. I know in my own experiences I have seen that. If I sent a person to open heart surgery who was scared to death or negative they almost never did as well as the person I sent with a positive "I will overcome" attitude. Been working hard to keep mine upbeat!

Again tonight was an update for Brad on the outcome of my day. This was quickly becoming normal at our house. Now all we can do is wait for the gene testing to come back. This will be the determining factor if we save the right or take it off. Sorry if I have you all confused by now. There is so much information and each decision hinges on the outcome of the next piece of the puzzle. Someone asked me, "when you get done with these appointments aren't you just so tired?"  Let me tell you, you have no idea. It is physically and emotionally draining. So, I decided to recharge with a Frappe Mocha on the way home!