The Do's and Dont's of communicating with a cancer survivor..

Life has been going on as normal and for the most part I am doing very good not focusing on what I have been through the last 6 months.  I do tend to push myself a little to hard and then I feel it later.  My best friend told me recently that I went from 0 to 100 on being busy all the time.  I explained that it has been very good for me to constantly do something so that my head does not have time to rest on this ugly thing.  She is smart though, because she said she knew my answer before I even gave it to her :) One thing I can't stop doing is thinking of different situations. I can say one thing that I am more aware of now (because I am not numb anymore ) is sometimes what people say to me about my diagnosis. Example, the doctor that was going to do a upper GI scope came in before my procedure and says, "Pseudomyxoma, I just love saying that"....... I was already given my meds so my MIL stepped in and said that "She doesn't love saying it."  This is coming from a medical professional, he probably should take some lessons on what not to say.  I know people don't know what to say and I have been in their situation and also not known what to say so I completely understand but I am a hugger so I just hug and tell them I have been thinking of them.  Of course this is a touchy subject to many because sometimes you open your mouth and things just come out but sickness and death is one that you gotta be very, very careful with not letting the wrong things come out.  So I have thought of a few things that might help put perspective on what not to really say to someone that is fighting cancer.  First, never tell them that you knew someone, friend, or loved one that lost their battle with cancer, or at least please don't start the conversation with that.  The biggest thing to remember is that as a cancer patient we all want to FIGHT to beat our evil cancer, so when you bring up death right off the bat, it deflates our fight just a little.  I was 12 days out of my big surgery and someone came up to me and started the conversation with, "You look great, I just lost my uncle to cancer".  I understand she was grieving and how sad it must be but I am trying to control my depression, not add to it.  Maybe another time it would not have been so hard to hear but it really took me back a little.  Second It's OK and most have no problem at all speaking of our journey, treatment, diagnosis, etc.  However, don't ask us what the prognosis is or statistics of survival.  That is something that we will share if we want to.  In my case, with my cancer being so rare, I have no idea what my survival statistics are because there has not been enough studies on the treatment.   I do know that there are 10 year studies and when I tell you that I have 80% chance of this not recurring that is good news!  I told someone exactly that and they looked at me and said that's not good, you are too young.  I just smiled but I was thinking why would you say that's not good?.....You have to look at the good side of things not the bad.  Third, saying something is better than not saying anything at all.  I know sometimes words are hard to find but there are so many little things that can replace words and still show how much you care.  After my diagnosis all the support I received was overwhelming.  Some sent cards, well wishes, and prayers.  Others would offer help in any way possible but others went mute.  It is completely fine not even bringing up the subject or asking questions but "I'm thinking of you", "it's so great to see you", or even a hug would replace any words a million times over.  It means the world to me to just to know that people care and believe me when I say it adds to my strength in every way.  Fourth, I don't know why I thought that me being diagnosed would change everyones view on living life but I did.  I really in my head thought that people I know and were close to would be awakened on living life to its fullest, always letting people know how much they care, and being happy.  I still am having a hard time coming to the conclusion that just because I view things different does not mean that others will automatically do the same.  Looking back I was just as guilty thinking that nothing was going to happen to me, and sometimes sweating the small stuff.  Now I ask you PLEASE do not take a single second for granted, please tell your loved ones you love them all the time, please do not think you have tomorrow to do something you should have done today, PLEASE don't assume someone knows how you feel, and PLEASE, PLEASE, PLEASE do not sweat the small stuff.  Lastly I thank everyone for saying how good I look since my surgery, but I want to remind everyone that you can look good on the outside and still be healing on the inside.  Not only am I still healing internally from this massive surgery but I am healing mentally on a daily basis.  I fight with myself every day to not get caught up in the what if's or the scary future but on the outside you would never know.  As positive and happy as someone may seem on the outside, they may be fighting themselves on the inside.  I go non-stop from the time I get up to the time I go to bed just to not waste a single second but when my head hits the pillow I have to really stop myself from going to that scary ledge.  I thank everyone that checks in on me with a call or text because that is what I and others fighting these diseases need the most.  Support in any shape or form is by far something that has kept me going and I still need through this journey.  When all else fails a smile or hug is always a winner :)

An EMOTIONAL walk

This last week my oldest son put all of his effort into collecting donations for the Relay for Life walk for cancer.  By the time he was done with a week full of trying he collected $350.00!!  We were so proud of his hard work and determination and the lessons he was learning earning this money for The American Cancer Society.  The day had come for the actual Relay For Walk in town and I was super excited to go walk  as much as I could.  However when we got there I have to say it was a bit of a disappointment.  I have been to Relay for Life in the past and the turnout this weekend was dismal to say the least.  There were probably a total of 20 people walking and sometimes even less.  With so many people affected somehow with cancer in their lives I was so sad to not see more supporters out there.  It was a very hot day but this was for a very special cause and that did not matter in my eyes.  I noticed right away that some of the vendors weren't there to walk but there to sell their products.  I thought I was missing something by seeing some of these people never walk a single time, what is the purpose of Relay for Life? I wanted to grab everyone by there hands and get them off their butts to start walking but that would not have been good ;) There were some teams that were walking in groups to support their family members or loved ones but our group was just me and all my boys. My husband grabbed my hand and we walked hand and hand the whole time :) I found myself getting very emotional while walking, thinking back to my diagnosis and even my big surgery just 4 months prior.  I had in my head based on others recovery that I would still be going through the recovery up to a year, I am so lucky!! Then my thoughts would go back to a post that I saw on a Pseudomyxoma-PMP Support Group earlier that morning.  It was a lady that had my exact disease and had been cancer free for 3 years but now it was back.  She was very bitter, you could tell, she stated she always knew this ugly creature would poke it's head back around and it didn't surprise her at all.  I gotta tell you I have a very love-hate relationship with the Internet.  When I first found out what I had I searched all day and night trying to find more out about my cancer. The problem is that it is so rare their is not much information or studies out there that you can actually rely on.  Many, many times I would tell my husband/my hero what I found while in full panic mode and he would have to walk me off that ledge by explaining that I do not know what I am reading and cannot put much trust in some of those studies due to the fact that every person has a different story to tell. He would literally do everything he could to keep me off the Internet at that point.  After my surgery and while in recovery I joined some support groups.  These are also very good and bad for me.  As you can see this one post that I read earlier in the day was stuck in my head as I was suppose to be focusing on walking!  My husband told me to look how far we have come and how lucky we are and to not to waste any time on what I had read.  He told me how excited he was for our future as the kids get older and all the plans we have.  I knew as he spoke those words that he truly believes this and I need to keep those positive thoughts in my head and not the fear that sometimes creeps up on me with one little situation.  We were told to go to the survivors tent to check in.  They gave my son a shirt because of his help in donations, then they told me that I got a purple survivor shirt.  That shirt brought on the tears, a single shirt could do that ?  I put this shirt on immediately and then started seeing all the other purple shirts around and thinking I wonder how their cancer journey has gone for them.  I had a real hard time seeing the younger kids with the purple shirts and that reminded me how lucky I was to get this and not my children!  So much was going through my head as we walked, It is a very emotional walk to say the least.  I was walking for me, my dear brother n law, the family we had lost and all the others that were in our same situation.  As me and my husband were walking hand in hand the whole way, the feelings were so powerful.  Who would think that walking could get to me so bad.... It was an emotional walk from the beginning to the end :)

SMILE, it can't be that bad :)

I was filling in for my secretary at work today when a customer called on the phone and the first thing she said was, "Do you know what happens to people that do things out of spite, they go to hell...." Before I could even say a word she says that my secretary called her about an open invoice and she must be just calling her to be evil because why else would she call within 2 weeks of receiving the bill.  This lady went on and on about how vindictive, spiteful and evil it was for our company to call her about her open invoice and there must be a hidden agenda in doing this.  Since I did not even know what she was talking about I immediately thought, wow this lady is very unhappy but there is no way that we made her that unhappy, she must just be a unhappy person.  I tried to help calm her down but there was nothing that was going to do that so I just said that I hope she had a better day and hung up.  Then my son decided he wanted to raise money for the American Cancer Society, Relay for Life this weekend.  He will be walking with his Martial Arts school so he got on his bike to make his way around the neighbors.  I have to say our family has never asked any of our neighbors for anything fundraising before but I let him do this because it meant something to him.  I know everyone has that one neighbor that doesn't say Hi and seems grumpy all the time, well we have quite a few of those in our neighbor hood.  I will say though my son is 11 and to shut the door in his face makes you wonder why that person is so unhappy?   I have always lived my life treating others the way that I wanted to be treated.  I also have whole heartily agreed that no one should live life miserable if it is something they have the ability to change.  I can say one of the biggest things I have noticed since my diagnosis is how many people just aren't happy people.  I mean there are some really unhappy people out there.  How hard is it to say Hi to someone, or thank-you?  Why are so many people on the defense all the time when it comes to just life in general or so judgmental of others?  Where are all the smiles at!?!!  I completely understand that some people have had a lot of bad things happen to them in life but so have I and many others.  In my life I have lived through poverty, substance abuse, major dysfunction, and loss.  Now with my Cancer diagnosis I could be one bitter person if I allowed myself to be.  I could walk around with all that hate in my heart from everything that I have been through, but I don't want to live that way.  When I see someone that I think needs to smile I go out of my way to try to make them do just that.  I feel sorry for those that have let themselves be so unhappy all the time.  I think to myself what if they have cancer and that is why they are so mad?  Maybe it is just the way they handle things. I know some people do have a hard time separating drama from their lives and that alone will bring people down.  I wish that there was some way to make some of these people understand that life is what we make of it.  We can get dealt some pretty heavy blows and believe me they do knock us off our feet but why stay down... Get up and enjoy this life that we have. I remember when I was younger I thought that 40 was so far away but now 60 seems to be right around the corner and time moves so fast at this point of my life.  I am and will keep working on not sweating the small stuff.  I have a GI doctor that just told me yesterday that he loves to see me so positive going through what I have been through and I simply said, "What choice do I have but to keep smiling."  Maybe if I keep going out of my way to show kindness to others they will do the same and so on, and so on.  I was as guilty as the next person thinking that I had all the time in the world but now I am wide awake to knowing that every second counts and I am just going to keep smiling, even if some do not smile back :)

Was I always such a worrywart?

It is almost crazy how much has changed over the last 6 months.  I find myself looking at pictures before diagnosis and thinking, I had cancer there and didn't even know it.  Fast forwarding to today's pictures and thinking, I can't believe how far I have come.  I was never, ever a person that would worry about my personal health.  I know how bad that must sound but I would worry about everyone else when it came to going to the doctors and taking care of themselves but not me. I think I was either just oblivious to anything happening to me or I was just lazy.....In fact some of my closest friends would get on me about going for regular check ups because I was just bad about keeping up on them. After you are diagnosed with any life altering disease, the doctors appointments, hospitals, tests, medicine, and insurance claims seem like they will never end!  I recently found out I have a blood clot in my portal vein so my primary doctor wants me to make sure I don't have a blood clotting problem.  This includes a series of tests with one of them taking so much blood that I seriously thought I would pass out.  As I was sitting there, I was thinking about all the blood that has been drawn over the pass 6 months and thinking my poor veins are going to somehow be damaged from all of this.  As I walked out of this 4 hour doctors visit, I found myself a little bitter.  I try and do stay positive for the most part but sometimes I do have those moments where something as simple as a doctors appointment or blood being drawn can just piss me off. As I text my husband and release everything I am sick of and his reply is a simply "Sorry Babe", and those words were enough for me:) So then I regroup and tell myself it could be worse and how lucky I am that I am just checking out a blood clot and not something else :)  I think the biggest hurdle I have had the last 6 months is to not worry so much about every little thing I feel.  The day I got diagnosed I started feeling all kinds of aches and pains that surprisingly I never felt before December 12th?  I knew exactly what I was doing with my mind playing tricks on myself but this was very hard for me to separate the two.  When someone asked how I was feeling I never would tell them how I was worrying about every single thing because I had to show everyone that I was not weak, but strong and a fighter.  I had myself convinced at first that everything I felt was cancer taking over my body.  My husband and I started immediately changing my diet, working out and preparing me for the long road ahead.  This helped my body and soul because my worries seemed to change from worrying about myself back to worrying about everyone else being OK.  Then the surgery came and my obsession with my body started back right away.  I worried in the hospital about a fever because that might mean infection.  I worried about my incision because it was so big and that could get infected.  I worried about eating because I knew how important it was and I just didn't have a appetite.  When I came home my best friend told me how she never knew all these 25+ years that I was such a worrywart and I told her that I never was until this.....My general doctor told me how that now that I don't have a spleen, if I ever have a fever over 100 degrees I must go directly to the emergency room and all I could think of was great, something else to worry about. My immune system has been compromised from the chemo so antibacterial has become our families best friend :)  and my husband has to deal with me asking him randomly if I feel hot because sometimes I forget that I am in full blown menopause from the surgery and it could just be a hot flash ;) I have changed my life since my diagnosis in many ways, and actually feel healthier than I have in a long time which seems weird after my massive surgery just 4 months ago.  I work out with a trainer, I walk 2 miles a day and eat much healthier than I ever have!  I just wish if there was one thing I could change it would be I would not waste anymore time on worrying about the little things associated with my health.  Was I always such a worry wart???? No and I definitely don't want to become one now!

My strength came from you :)

I have been reflecting a lot lately on how I was able to get through this crazy time in my life.  Down to when I got diagnosed, to my surgery and now my recovery.  I mean I know some say I am strong person but I would personally question that at times. I can say I know I have a high tolerance for pain but that does not mean I am mentally strong. Now sitting here one day before my 4 month anniversary to my crazy surgery, I have realized I am stronger than I ever thought I was!  I can say without a doubt though that my strength through all this came from my family and friends.  Their kind words, cards, flowers, meals, texts, calls and prayers allowed me to find that strength that I needed to get through this roller coaster called cancer.  I can remember when I found out what I had, I didn't want to talk to anyone.  I could not even talk to my family without losing it, and who wants to talk to someone that is hysterical every time you call..... Those that know me know that I have the BESTEST friend in the whole wide world and neither her or I could talk to each other on the phone because we were both such a mess.  My husband=My Hero did not only put on the hat of caregiver, Mr.Mom, medical liaison but also communicator to all.  He became the one that would pick up everything that I just couldn't handle at the time which most of all was communicating with others, doctors, family and friends.  He would tell me every kind word that everyone said as they called to check in or just to tell us they were praying for us.  There were friends that we had not spoken to in years, family that lived all over the world, new friends and people that we knew through business, church, sports, that would reach out to us to just to say they were thinking and praying for us.  It didn't take long before those words started to absorb and help me build the armour I needed to fight this war.  I felt the strength in prayers and love that was surrounded me and to be honest I never knew there was so much until this happened.  We set up a game plan to go through my surgery which included my mother-n-law taking over my motherly duties for the boys after surgery, she actually took FMLA to do this :)  My husband, never left my side until my baby sister flew up to the hospital to relieve him and be there for me.  The nurses would always tell me they loved coming in my room because it smelled like a garden.  So many people sent flowers we ran out of places to put them so we shared them with the nurses stations:)  I had many visitors, aunts, uncles, cousins, family and friends that it definitely made my hospital stay fly right by.  My best friend took 2 weeks vacation to come help me when I left the hospital.  She definitely kicked started my recovery because she did not give me a opportunity to feel sorry for myself or become depressed.  All the meals everyone provided was unbelievable.  We did not have to cook anything for a good month.  Both my sisters came up and spent time with me also to help me any way possible.  Cleaning, cooking, helping with the kids and most of all just sitting by my side.  Friends brought gifts, family checked up on me daily and everyone was still sending their thoughts and prayers.   I know it seems like I am repeating myself but this cannot even begin to explain how much love was thrown our way during this time.  I have thought many times how I could thank my loved ones for all they sacrificed to help us and by simply being there for me.  I don't think I could ever thank them enough! I felt the power of prayer every day and still do.  I can whole heartily tell you that without this outpouring of love I question how I would have handled this all.
As you read this please remember how much it means to someone to just call, text or let them know is someway you are there for them.  It has changed my life for the better and I want you all to know at the end of the day, "MY STRENGTH CAME FROM YOU!"