Life After Cancer

Oh SPit!

Last year was the year of all years in many ways. It held a lot of firsts, a lot of change, a bit of pain (okay likely more than a bit) and yet it was full of peace and love and so much goodness. After two cancer diagnosis, chemo, 4 surgeries and a year of IV treatments post breast cancer, I decided it was a good idea to speak to a geneticist in regards to the possibility of any other cancers that I may be prone to.

Honestly I didn’t even know what that would look like. Can they tell you that based on the types of cancer you had what else you may end up with? When it comes to genetics how much information do they need to know about your extended family in order to determine your risk? If there is a family history and there is a connection to my DNA, then what? What can I do? What can they do?

Before meeting with the geneticist they had me fill out an online questionnaire that went through my family tree and any types of cancer they have or had. Along with that they needed to know their ages now or when they died.  Tis was yet another time when I was thankful for Facebook. I was able to contact some of my cousins through messenger and ask about their parents who had passed. I found they were more than willing to fill me in on the details they knew about.  This helped immensely as I had a lot of gaps.

As it turned out there were two types of cancer on my father’s side that I hadn’t been aware of. Upon going over this information with the geneticist it became clear that it was in fact a good idea for me to have further genetic testing. While the testing cannot tell me if I have or ever will have another type of cancer it can give us some very helpful information. The geneticist was able to share that the information would potentially show if I the genetic make-up or mutations that may cause me to have other types of cancer. It would also be beneficial to my sister and my children as well. Depending on what is found they may want to get tested as well to see if they have any gene mutations that coincide.

While the testing cannot tell you whether or not you have or in fact will get cancer it can help you determine when to start screening for certain types of cancers or take other preventative precautions. You may also decide to take certain medications to help with the possibility of certain cancers or even have surgery to have ‘at-risk’ tissue removed. For me, it will either put my mind at ease that I have no mutations to put me at a greater risk. Or it will help me determine screenings I will have to hopefully catch any possible cancers sooner rather than later. That has worked out quite well for me thus far.

The geneticist had a bit of discouraging information for me when it came to having the testing done. Unfortunately Regence, which happens to be my insurance company, does not cover the full panel of genetic testing. They prefer that you test for one mutation at a time. Even then they do not necessarily cover it in all cases if they do not deem it necessary. When I was diagnosed with breast cancer my oncologist ordered the BRCA1 and BRCA2. The results were negative. In light of that Regence would not cover the full panel the geneticist was now recommending. It would then cost me $4000.00 of pocket to have the panel completed through the company (Myriad) that my insurance, and most insurance companies for that matter, is partnered with for testing. There are many more mutations that the BRCA1 and BRCA2 do not cover that I could have. The good news is that there are other options for testing.

There is a company named COLOR Genomics.  While I don’t completely understand all that there is about this company, what I do know is that they are able to provide the same panel of testing for a fraction of the cost. $249 to be exact. Compared to $4000 that is a huge savings. The way the geneticist explained it was that they came about because they knew many patients could benefit from genetic testing for mutations that would allow for preventative care or early monitoring that couldn’t afford the fees when their insurance wouldn’t cover the testing. In reading a bit about them on their website I found that to be true along with other information. The way I read it, they knew that there were studies being done where genetic testing would help with research in order to show statistics as far as who was prone to get what type of cancer. The problem with the studies was that they were unable to provide the findings the participants as the studies were being done for statistical purposes not for the purpose of helping the participant. I imagine it is a bit more complicated than I have described it, but that is the just of it. There was mention of not having the appropriate licensing or set up for notifying the individual participants. And thus Color Genomics was formed to provide testing at an affordable price where participants are not only notified but are also informed.

All participants receive their panels back with information on the positive or negative results. They are also contacted by a genetics counselor that goes over the information. They are also required to give a physicians contact info where the results are sent to as well. They are however assured their results are private and will not be shared with their insurance company unless specifically requested to do so by the participant. They results are used in studies and research on a more generic level with no personal information attached to them in the studies aside from age, gender and race I believe. You can visit their website to read more about it. Color Genomics

It took me a while to order my kit. Procrastination at its finest. At first I waited as I had asked the geneticist to confirm that Regence would in fact not cover my testing. Once confirmed I think a small part of me is afraid to know what mutations I may or may not have. Obviously I am a huge proponent of early screening as that is how we found my breast cancer in the first place. And yet, to be told that I have a mutation that may or may not mean I will get another cancer may just be more than I can handle right now. I have wanted to believe the idea that my breast cancer was a fluke. That it was caught so early and treated aggressively so that it would not return (which actually means come back as the same cancer but in another part of my body). And yet, the small chance that something like would happen stays there in the corner of my mind. In my peripheral vision so to speak. Never gone. Always there just in sight keeping me wondering a little bit. Taking the test means I may find out that I have a genetic mutation that could mean I am more likely to get a particular cancer. Something that scares the heck out of me.

And yet, if I know then I can be proactive. I can start screenings earlier. If necessary I could elect to have surgery now and remove that area that is most likely to get cancer. This depends on the location, the organ and the overall information that would determine the likelihood of me getting another cancer. On the other hand the information could cause me to stress, worry and wonder if and when I will actually get another cancer if it shows I am predisposed to one.

I ordered my kit and received it within just a couple of days. Upon opening the kit I found the instructions were simple and straight forward. I was first instructed to login online to register my kit and the vile that my sample would be sent back in. The vial had a unique customer number as well as a unique serial number. Along with these numbers I asked to enter my personal information, my Physicians name and contact info, as well as fill out a family tree and history of cancer for all that applied. All of this information will be used when they are running the tests on my sample. Once all of that was complete I was ready to provide the sample.

There were clear and simple instruction for this as well. Now all I needed to do was conjure up enough saliva to spit into the vial filling it up to the fill line. I had been assured in the brochure and in the video online that it was not as much as it appeared. Apparently the vial had a false bottom. It was actually a smaller space than it appeared to be upon first glance. Yep, that was in fact true. The video even gave you examples of how to conjure up said spit. They said you should think about eating a piece of candy or if that fails rub your cheeks in a circular motion. Try it, it works. Saliva produced, I then had to close the cap and let a pre-included fluid mix with my saliva. This solution would help preserve the integrity of my saliva during transportation. After sealing up the vial, putting it back in the box and closing the original package that it came in which had a prepaid postage sticker already on the back, my spit was ready to roll! All that was left for me to do was deliver the package to my local USPS for shipment.

And it’s off! My spit is currently in transition to a lab in California. Once received I will receive an email notifying me that the testing will begin. Once completed I will receive the results and be contacted by one of their geneticists. Then I am supposed to follow-up with my Dr. as well. The turn around time is supposed to be 3-4 weeks from the date they receive the sample. Tick tock. Tick tock. The clock is tick-tocking in my brain. And so, I wait.

 

Life After Cancer

A little less of me.

The year began like any other with me writing goals for the year more so than resolutions. Years ago I wrote a blog about New Year’s resolutions. It came about due to so many people’s posts on Facebook about how they didn’t like New Year’s Resolutions or why they thought they were wrong or a waste of time. I personally felt that New Year’s Resolutions were more like goals you set for yourself. Sometimes we achieve our goals and other times we fail. What would life be like without failure? If we never set goals, never try at something, never fail, then what is the point? Why go about our lives day in and day out, year in and year out do the same thing over and over again? What is that quote….. “Insanity: Doing the same thing over and over and expecting different results” – Albert Einstein.  Failure often leads to one trying again or trying something different. At least it can. And so, I firmly believe in setting goals, New Year’s Resolutions, plans, lists, and revising them as needed in order to continue on in life.

I should look back and see what my goals were for 2016. I can’t even imagine what they were. When January 1, 2016 hit I already had three appointments on my calendar. One on January 5th for a biopsy of cells found in my right breast. And one on January 6th for a biopsy of a mass found in my left breast. The third appointment was set for January 11th and it was to find out the results of my biopsies. Although these appointments were in my calendar I set goals for the year. All of which were put on hold come January 11th when we were told I in fact had breast cancer.

The year quickly took on a new agenda which was to do what I needed to do to ensure many more years, decades with my family. As the year went on it continued to take a few turns here and there that were not on our original map. Each turn brought a different treatment, test or procedure. All of which contributed to our ultimate goal of many more years together in the future. I learned many great lessons throughout the year. Some of which included how amazing our friends truly are, how broad and wide our friend circle actually was, how to let others help us rather than us help others, how to receive blessings over and over again, how to allow my body, my mind and my heart time to heal and grieve, and how to accept that just when I thought it was time to go back to work, it wasn’t.

I started off 2016 with a whole body  accept for two small parts that had been removed when I was quite young, my tonsils and my appendix. This year alone I have lost (or had removed) both breasts (complete bilateral skin sparing mastectomy), some lymph nodes, my uterus, my fallopian tubes, my ovaries and my cervix. Just when I was starting to grieve the loss of my breasts and the acceptance of my foobs we found it was necessary for me to undergo a complete and radical hysterectomy. I put my grieving on hold and went into surgery. In 12 short months I have had 4 surgeries, 12 rounds of chemo, and about 19 IV Immunotherapy treatments. I have 6 more immunotherapy treatments to go which should wrap up in April/May of 2017. And now in December I am aware that there is a little less of me. In some ways they are just body parts, as crude as that may sound it is true. In other ways I know that as I reflect on them and on the changes to come I will begin to see and accept that they were more than body parts, they were a part of me. As 2016 comes to a close I find I want to take time to reflect on all of the good that came to us this year. The blessings are many. As I look forward to 2017 I envision time for reflection, time for grieving, time to share all of the changes in my body in hopes of helping others, and time to transition back into ‘normal’ life after treatment as the year progresses. I will once again write down New Year’s Resolutions and look forward to seeing how they play out over the course of the year.

31 Days of Writing

Day 2 Discovering Me – 31 Days

Thankfully the 31 Day Challenge officially starts on October 1 and I as getting a head start. I already missed Day 2! There just was no time to write yesterday. Well, other than if I had set an alarm and gotten up earlier or if I had stayed up past my bedtime and wrote then. As you can see, that didn’t happen.

So back to my questions. Where did I leave off? Am I the friend I want to be? Am I the woman I want to be? I am sure there are more areas of my life that could be brought into question. For the sake of time and to not beat a dead horse with this one way of discovering me, I will answer these two and move on to other avenues of discovery.

2016 has been an interesting year for me and for my family. On January 11, 2016 I was officially told that I had breast cancer. DCIS and IDC in the right breast that was triple positive and grade 3. DCIS stands for Ductal Carcinoma In Situ. IDC stands for Invasive Ductal Carcinoma and means some cancer cells had moved outside of the duct. Triple positive refers to the fact that my cancer cells tested positive for Estrogen, Progesterone and HER2. Apparently my cells fed off of my own hormones and protein to help them grow and multiply at a fast rate. Grade 3 on a scale of 1-4 determines how aggressive my type of cancer was. Plainly said it was aggressive. The good news was we caught it REALLY early. It was classified as Stage 1. It would have been Stage 0 except it was just slightly over the maximum size for that stage. It could have been Stage 2 but thankfully it had not spread to my lymph nodes and the size was small enough to stay in the Stage 1 category. With early detection and aggressive treatment my outlook is extremely bright!

In light of the treatment that lay ahead I set up a Helping Hands Calendar. A friend of a friend had told me about it when we were emailing about cancer treatment. It sounded like a terrific idea. You set up a calendar and post your needs for rides to Dr Appt, treatment, meals to be delivered, house cleaning, whatever. People can sign up for whatever items fit their schedule, budget and energy/commitment level. You don’t have to ask and hear no or call 10 different people trying to find someone who can help you. And your friends don’t have to feel guilty saying no. It is perfect in my opinion. In setting it up I realized that I had to invite people to join the calendar as it is private. Here is where I got a little nervous. Who would want to be added to my calendar? What if no one did? Or only a couple of friends. What if I was asking for too much help? I made a post on Facebook explaining what I was doing and asking anyone who wanted to be added to reply to my post. The response blew me out of the water! When all was said and done I had 72 friends signed up on the Helping Hands Calendar. The biggest complaint I got was that every time they logged in to sign up all of the opportunities were already taken. I’m not joking, they complained. My hear was beyond overwhelmed with how people responded. I posted this on Facebook and several friends told me something along these lines, “You are one of the most giving, generous people we all know. It is finally time that we can give to you.” A compliment like that was hard for me to receive. I can think of all the times I have failed a friend, didn’t reach out, hurt someone’s feelings, didn’t jump at the chance to help someone because I had too much going on. And here they were telling me that they see all of the times I/we do reach out and help others. If I made a list (I wouldn’t because it would so look like bragging in a terrible way) of all of the things Tom and I have done to help others, it would be long indeed. We don’t do them to earn points or keep a standing record or toot our own horn. We do them out of a sincere appreciation for the life we have, the help I received in the past and the love we want to share. Our friends let us know in a very mighty way that they see that and were standing ready to give back to us. What a joy!

Am I the friend I want to be? If I had answered the question myself I am sure it would have started with the times I have failed and a hope to be an even better friend. Instead I will look to what our friends said and showed us this year and say, Yes I am the friend that I want to be. I hope I continue to be that friend all the more as the years go on.

The last question, Am I the woman I want to be? I will have to answer that one tomorrow as my time for writing today is coming to a close.