Thursday, February 28, 2013

So a couple weeks ago I got an email from one of my blog followers. He explained that his wife had battled mesothelioma several years ago so he knew first hand the struggles one faces as they try to be a caregiver to a loved one.  Cameron asked if I would be open to him writing a short article about his experiences that I could then post on my blog. Needless to say I was delighted!

Below is what Cameron sent. I have only quickly checked out his blog, but it's clear he is on a real mission to share his story and do what he can to make a difference. I posted the link at the end of his article and would encourage you to check it out!!! Thank you Cameron for taking a moment to contact me and for sharing your passion about helping families and caregivers through their experiences and emotions as they offer support on a cancer journey. Maybe together we CAN make a difference!

Caregiving  For a Cancer Patient

On November 21, 2005 my wife Heather was diagnosed with malignant pleural mesothelioma, a form of cancer that would put us on the battlefield for the next several years as we tried to overcome it. To Heather, her diagnosis was so frightening that she couldn’t say anything after the doctor told her the diagnosis. The news came just three months after one of the happiest moments of our lives, the birth of our first and only child, Lily.

The doctor was reading off our options for treatment and telling us where we could go to get help. It was either a local hospital, a regional hospital further away, a treatment center in Boston, where we could see a renowned mesothelioma specialist named Dr. Sugarbaker.  I just wanted to get Heather the very best treatment available. I turned to the doctor and said, “Get us to Boston!”

The next few months were a whirlwind of doctor’s appointments, traveling to and from Boston, and handling Heather’s condition as best as possible. I learned to be her constant caretaker, even as I had to work a full-time job and raise our infant daughter. The pressures of being a new father, a full time caregiver and the sole provider for my family were enormous, and I frequently found myself overwhelmed and breaking down under the responsibility.

There were moments during Heather’s illness where I would go off by myself to cry. I didn’t know how to handle what was happening around me.  Medical bills steadily piled up and I feared we wouldn’t be able to pay them all.  I constantly feared that I would lose my wife and be left a poor, widowed single father. I cried to myself though, never letting Heather see my moments of weakness. In Heather’s condition she wasn’t in any shape to deal with these things I kept them hidden from her as much as I could. It was her health that was first in our lives. She HAD to beat cancer!

I learned several lessons as a caregiver that helped me make it through. First and foremost, I learned to let go of my pride and ask for help. Our friends and family came to our aid in our darkest time, providing everything from a shoulder to cry on, to desperately needed financial assistance. I learned to let myself be weak at times.  Bad days are inevitable in a situation like this and you can’t fight them. Let them happen, but never let yourself give up hope. Hope is your greatest weapon in this fight.

Over the following months, Heather would undergo extensive and difficult treatment for mesothelioma. Against all odds, with the help and support of our loving community and the care of our incredible doctors, Heather was able to beat mesothelioma, a rare feat accomplished by far too few. Today, over seven years since her diagnosis, she is healthy and cancer free.

Caring for someone with cancer requires a total commitment, a strong will, and a strong heart. I didn’t start the journey with those things, but now that Heather is cancer free and watching our daughter grow up, I am proud to say that I have grown as a person. I hope that by sharing our story of success over this ugly cancer I can help another currently in their own battle today.

Cameron Von St. James 

http://www.mesothelioma.com/blog/authors/cameron/

Tuesday, February 26, 2013

Been a series of crummy dreary days here. Stomach flu over the weekend, the allergic reaction to my eye lids persists and this week progressed under my eyes so yet another doctor visit. Yes, it 's safe to say I look a good 20 years older than my age because of the dry skin and wrinkling it's caused. And this hormonal weather is really something else. Despite all that we are trying to stay positive and look forward to spring.

We've really tried to focus on making more time to spend together. We spent a big day out of town at the Boat Sport and Travel show recently. So much fun!  Made it home in time to watch our very talented niece in a basketball tourney. Last night I once again offered for Brad to join me at the cancer support group meeting. After declining in the past this time he said yes! The topic was stress and our guest speaker showed us about 10 tools to help us relax-meditation, concentration, and stretching. I found it very helpful. It was one of our best attended meetings so far. My take was the techniques were very helpful to Brad. However when we left he said they didn't do a thing for him. I have a feeling he would say a cold beer and the Lazy Boy would have worked better. :) At any rate I was thrilled he joined me and one of the other gals really gave him kudos for being there.

It was a big night for one friend as she openly addressed the stage of her cancer and some of her plans. I'm quite sure it was a difficult thing to do and it made me so sad knowing her prognosis is not the same as for many of us. I think it was good for Brad to be surrounded by 8 of us at differing stages of the disease and treatment process. I'm certain it was completely out of his comfort zone though so simply attending was a big thing for him. I can't tell you how important it was for me. I certainly don't expect him to attend regularly but certain topics are much more geared towards family and care givers.

It's very exciting to talk about some of our upcoming speakers, and we are planning to recognize two months this spring that are dedicated to cancer awareness. Before we know it Relay For Life will be upon us. I have officially registered my team Camping Out for a Cure. That's as far as I've gotten so far. Really looking forward to that event.

Had lunch yesterday with an old friend and co-worker. We have been on our journeys together this past year. It was a wonderful time catching up and swapping stories. She really looks great! It's always good to talk with those who know first hand what the experience is really all about because they truly understand all aspects of the process and can relate to your experiences and feelings. Just good ole' "girl chat"!

Tuesday, February 19, 2013

Thought it was about time that I do a little follow up. So as you know Brad did not come to my surgery at my request, not because he chose not to. As difficult as that decision was for me it proved to be the right one. Deep down in my heart I really wanted him there, that's all I've wanted this whole time was his emotional support. However knowing how past surgeries have gone I was very comfortable that day just knowing that I was not going to have to listen to complaints he had or deal with his uneasiness in such situations. Since surgery was an hour behind that would have been a big stressor for him and that stress would have been deferred to me.  Instead that delay was time to work on planning our high school After Prom that I'm co-chairing. My sister was there and has been involved in the past so we covered lots of topics in that hour. My mother-in-law is very creative and chimed in as well.

After I got home from surgery Brad made no hesitation in telling me that it was a horrible day for him. That didn't really surprise me but I hoped that it caused him to do some serious thinking. Needless to say we have had several difficult as well as some very therapeutic conversations in the past few weeks. There is a lot of healing that needs to take place for me. As I told my sister, it would be easier for me to go through the entire cancer process again than it would be for me to feel that Brad didn't totally understand how much I needed his support and how that was so difficult.  It doesn't seem to matter how old we are the first thing we want when we are sick is our mom. Well mine is out of the picture. Not having a mom at my side and not having my husband as my "rock' left me to defer to my girlfriends. Don't get me wrong, as I've said a hundred times over their support has been amazing!!! However, there is nothing that can replace the support one feels they need from their soul mate.

Some may wonder why I didn't address this topic more earlier in my journey. There are probably several reasons. The biggest being that there were too many other things to share like terminology, test results, options, treatments etc. I did hint along the way that heart to heart discussions and date time were really lacking. Also because as the year went on and my appointments became fewer, there was less medical information to share, therefore it seemed a good time to focus on relationships. For us our birthdays and anniversary are all during the holiday season. I kept hoping that as medical issues slowed we would begin to  reconnect as we celebrated those special events. When that didn't happen the picture was very clear that what I was feeling really was a problem for us. And lastly I tiptoed around the topic because I didn't want to paint Brad as a horrible person.

Recently I again explained to Brad that I had so much to deal with on my own yet I felt I was frequently reaching out to help him.That was fine but the fact he was not receptive was hard.  We again discussed that pretty much anything he may have been feeling or dealing with was normal, he just didn't know how to talk about it or how to reach out. He did "vent" to a couple of family members but shared that he felt no better afterwards. There were books I had offered him that he had no interest in and outright refused to even skim through. He has completed one and started the second. One is simply on relationships in general and the other is on the role of the breast cancer husband. I think I talked about it in the beginning but it is a must read for men in Brad's shoes. It's written by a journalist whose wife was diagnosed. Their personal experience set him on a mission to speak to other couples and to detail how they could have made things better for both of them along the cancer journey. How to Help Your Wife (And Yourself) Through Diagnosis, Treatment and Beyond by by Marc Silver would make a wonderful gift to someone or their significant other who is newly diagnosed. Pretty sure I found it on Amazon and it was not very expensive.

We had our first "date night" planned by Brad in over 14 months. It just happened to be on Valentine's Day. As we enjoyed a lovely dinner at a nice restaurant that we'd never been to we discussed that in 28 years together (5 dating and 23 married) we had never, that either of us could remember, been out to dinner on Valentine's. Crazy! That time spent alone together just enjoying each other's company stress free and organized by him...well I can't tell you how amazing that was for me. You can't put a price on some of the simplest things in life.  It was just as good as hearing "you are considered cancer free!"

Since then we have continued to work on moving forward. For me I have to forgive the hurt I felt. For him he has to learn how to express himself better. There is no doubt that cancer turns anyone's life upside down. What it does to their family is equally as important. Talk, talk, talk is the biggest piece of advice I can give to anyone diagnosed with cancer. One book I read actually suggested that couples set aside one night a week for open discussion about what's on their minds  and anything is fair game. I truly believe there is a giant need for immediate help to be offered to families.  It could be counseling services, suggested books to read, local support groups to attend etc. I do know that the doctor I saw as one opinion did hand out a paper with suggested reading material but it stopped there. Still, something is better than nothing.

Whew, I'm worn out just rehashing these thoughts so enough for today. I'm hoping to have quite a bit more to share along the way.

Saturday, February 9, 2013

I'm so excited! Remember Lori and the tea cups?  Well I just learned tonight that she got good news on the test results that she was waiting on!  Thank you for your prayers for her because they were answered!!!  God is good!

A friend and fellow survivor shared the news with me at a ball game tonight. And it gets even better... this same friend also got some good news as she too is a multiple time survivor. She has a couple more steps to complete but her treatment is working. Yea!!!! Oh I so admire these women and nerves of steel! You ladies rock!

My first night back to work was fine and I'm not nearly as tired after this surgery. That helps tremendously! I have been exercising and trying to get back on my diet plan. Last week was rough as we had too many social engagements that involved eating out. I really want to keep up the work and lose a minimum of 5 more pounds but preferably 10 before summer. All the positive compliments sure make the hard work worth it that's for sure. I think I can I think I can!

Oh and yesterday was a big day...I got to actually wear that "normal" bra that I bought! Oh it's the little things in life sometimes that really keep ya going. :)

Wednesday, January 26, 2013

Mark it on the calendar!  I had a normal post-op appointment!  Yea!!!  Everything looks great and I am fully released to go back to work. It's amazing how quickly the incisions are healing and how the scar is already showing signs of fading on the left side. The right was more puckered but it's getting much better. No need to see my plastic surgeon for three months. Then we can talk about possible nipple reconstruction and tattooing. At this point in time I have no interest in any of that.

My doctor explained that he won't even consider reconstructing the nipple for at least three months.  That allows the incisions time to heal and for any shifting that may occur. Should the nipple be reconstructed now the tissue may pull tighter as it heals or may loosen in some areas. He is a perfectionist and said that may then cause a nipple placed too early to be off center or to be too high or too low. That all made perfect sense.

I have had many questions about the tissue expanders. It's difficult to picture what it is without actually seeing one. Above is an expander. It  is very thick, almost like a vinyl consistency.  The gray area is the access port. This is where the physician injects saline for a fill. He uses a small magnetic object which he moves over the chest that locates the port. Then he presses on the skin just to make a small indentation.  Next he swabs the skin with alcohol and injects the determined amount of saline. The port is self sealing and I had no bleeding whatsoever from my fills.

This is a picture of an expander that has been inflated. You can see they are flat on the back side where they sit next to the chest wall. It's hard to imagine that they look fairly natural because this looks rather oddly shaped. They actually did look relatively normal but they sure didn't feel it. They were hard as rocks!  OK, not quite that hard but it seemed like it.

This is a photo of the actual silicone implant that I have.  It is very soft and pliable. When the integrity of it's surface is broken it is like a gummy bear and the silicone doesn't actually ooze out like in the implants of years ago. The saline implants looked just like this but are much more giggly for lack of a better word. Mine  are very natural feeling and very soft once implanted. I don't even know they aren't mine unless I touch them.

I have a card that I will carry that says I have an implantable device. Every three years I will need a breast MRI to check the condition of the implants as suggested by the FDA.

Since I'm already healed so well I went ahead and shopped for bras. Most of the time I haven't even worn one-there just isn't a need. When I have it's been sports bras.  I was professionally measured as I had no idea what size I would need now. Because the implants are a much different shape than my own breasts were I figured it would make a difference. Sure enough, a whole cup size larger. I was a B cup for years. As I got older, gained some weight, and of course started to experience gravity, I was a C most of the time.  Today I measured a D.  I tried on some Cs in various brands just because different bras fit differently.  It was clear I am no longer a C! I'm thinking I will probably wear a bra most of the time until it gets hot. Then I plan on taking full advantage of the fact I don't HAVE to wear one!

I will go back to work tomorrow night. It just happens that they only have a half shift available and in the Alzheimers building so that will be perfect-a short shift and no lifting. I'm looking forward to getting back to my normal routine!  Now my entire goal is to go a VERY VERY LONG time with absolutely NO surgeries!