God knows where he send you.

Sorry its been so long since I posted and stumped everyone with the scan results.  We have been very busy with the boys starting their summer sports.  Well Mark more so then me. I am also still researching some more treatments and trying hard to get this damn nasty bone pain under control.  I am on a new weight gain program.  Its only been two weeks but still no luck.  I have also been taking some appetite enhancers. That seems to be working well.  Dr. Friedland explained to me that my cancer is working so hard to take over and my body is fighting so hard to stop it.  That struggle is burning so many calories it hard to maintain a healthy weight, but it is so important.  So please pray I start putting some on.  We are leaving in mid June for Nashville to Vanderbilt to get some advice from Dr. Liu.  I am praying he has some options for me.  In the meantime, with much hesitation, I am starting Sutent chemotherapy.  The $8800 a month drug is covered by my insurance, but the joke it that it has a $663 co-pay.  UGH insurance companies are true crocks. 

The boys are helping me forget a little about all the above because like I said they started their spring sports and summer leagues.  So we have two in baseball, one in soccer and two in summer/spring basketball.  Just typing that sentence makes me feel blessed that I am here to see them play.  I don't get to every game now, especially when the weather is cold or rainy. If a virus is not caught the bone pain puts me over the edge. It makes me sad because I remember when the boys were young and saying that I would never miss anything they did if I could help it.  I do try really hard though to make it to most of them.  I was thinking that I was burden for them to have me tag along.  I'm in so much pain and its harder for me to walk.  Then I can't stay long.  So if Mark is coaching and I'm having a bad pain day its impossible for me to sit though a two to three hour baseball game. But they made it clear they just want me there to see a little.  So I try to drive myself or the other day a friend took me.  Tonight Austen had a basketball game.  Yes basketball, when you reach High School sports are all year long.  This is just a summer league.  I felt pretty good because it was a gorgeous day in the Burg. We made it there just in time to drop him off but he said he will wait until we park to help me.  I told him to go but he insisted that he had enough time.   When he helped me out of the car he asked me where my little purple pillow was. I take it to alot of place because its good for the spine pain.  I told him I would not bring it to where anyone would notice because I don't want to embarrass him.  He gave me the old teenage shrug and mumbled, "you will never embarrass me mom".   I felt so happy that he did not think I was a burden. 

I have so much to get you caught up on.  First I want to tell everyone about an experience I had a week ago Sunday.  In the early afternoon, beautiful perfect day, I went to Logan's soccer game.  I love watching him play. He's a goalie, like Mark was, so its a lot of pressure.  He doesn't feel the pressure, his mom feels the pressure.  I watch the game with one eye closed and one eye open, just like I watch Austen's and Nolan's pitch in baseball.  Ugh the Pressure!  Anyways I was sitting with my favorite soccer family, the Abdulovics and we were talking about my scans results, my treatments and just the cancer battle in general.  I tend to be very candid with them because they have been by my side since the battle began.  So its important for them to know what going on.  Also, they are just that couple that I know I could pick up the phone anytime and they would be standing by my door to help. Help not just me but Mark and the kids. In fact this Halloween Janet went all over Pittsburgh to find a special custom for Nolan with literally no notice. I was told they were sold out everywhere and I had chemo early that day so I knew I would not be able to go search.  Well she found it.  I want you to understand I know I am blessed that I have so many people in my life that would do that and the Abdulovics are those special ones.

Anyways sitting next to me was a Dad from the other team, who I must say looked completely overwhelmed, with his two sons.  They were older maybe 10 and 13 and not very well behaved.  It wasn't bothering me because having three boys I have had times like those. However, I could tell the dad was embarrassed and had little control.  They were actually fighting each other and really disrespecting the disheveled dad.  Towards the last half of the game the older boy pushed the younger one and he landed right in front of me touching me feet.  The dad apologized to me and I said that I have boys and understand.   I believe the man had been listen to our conversation early and already knew that.  He then asked me if they fight like that. Janet who somehow thinks that my boys are perfect, which they are not, shook her head no to the man. They do bicker at times but the don't lay the hands on each other.  To spare his feeling I told him they bicker.  He then began to tell me he was a single father and they lost their mother to cancer six months ago.  At that moment I felt an instant connection along with a big lump in my throat.  I could tell he wanted to talk about it so he quickly continued on about the mess the boys where in.  I asked him what cancer she past from.  At that moment his answer almost knocked Janet, Daryl and myself to our knees because he said Carcinoid.  We continued to talk about her battle which only lasted 9 months, with 6 of those months in bed.  It broke my heart.  I could not help but think despite my last scan results and the struggles I have been having how blessed I was to have four years, as of yesterday, from diagnosis especially since they told me my battle would be six to nine months.  Four tough years but four years. Several surgeries, trips to several doctors all over the United States, many tough chemo treatments, clinical trails and trips to Switzerland in those four years but four years.   Four years to see my kids play sports, go to school, first formal dance, knee surgery, sports disappoints, music concerts and several other milestones.  Four years to love my boys like there was no tomorrow.  How blessed am I!!!!

So not only did this mother have carcinoid cancer and three boys close in age, one actually a goalie like Logan, she was a photographer as well. He said that there were so few pictures of her with the kids because she took them all.   He must of heard me earlier tell Janet and Daryl that all I wanted for Mother's Day was to have a new family portrait taken.  Because in all the pictures, I being the photographer I am always behind the camera.  But not just a portrait but fun taking the portrait; good attitude and all.  The crazy likeness to both of our families was so incredible.  What a crazy experience?  Or was it?  In the words of my pastor, "you go know place by accident, where ever you are God is sending you".  During our conversation the dad mentioned to me that he is so angry with God for taking her away from him and the boys.  He talked about how much he loved her and what an amazing mother she was.  He said that he worked all the time and she did all the "kids stuff".  Our conversation about God moved on quite smoothly, which surprised me.  We continued to talk about God and this man's Christian religion; I mostly listening and he mostly talking.  He said he was a strong Christian before she got sick and they never missed church.  The kids participated in all the church groups and his wife did several Bible studies.  I asked him if he still has faith that there is a God and he said yes.  But he said, " I am angry at Him".  He is working hard to get through the anger with his pastor but he is really struggling.  I am not real good at preaching, especially at a soccer field, so I really did not know what to say.  As he was going on about his anger, which is completely understandable, I just said a quick pray silently asking for the words to say to him.   

As the game ended Daryl started cleaning up my space, see how they have my back (I always bring a chair, the purple pillow for my spine, and some food).  I said my goodbyes to dad, and told him I will be praying for his peace with the Lord and I know  then everything else will fall into place.  He then reached out and gave me a hug. It was awkward but I knew it was what he needed to do.  However, I was very  relieved the conversation was over. It emotionally drained me.  As The Abdulovics and I walked to back to our cars we were all wiping our tears.  We were in awe of what just happened. We all were putting Mark in the place of that man.  I hope they realized, like I did, that the meeting was meant to be. As I was driving home I could not help but think how much I needed that man to tell me his story that day.  He was thanking me for listen meanwhile I was thinking how lucky I was to hear it.  After the week of bad news and feeling kinda down I just got smacked in the face with how blessed I really am.  So the scans are worse and I am sicker then before, I am here watching my boy play soccer.  My husband is on the sidelines coaching and watching me from across the field.  I am sitting with wonderful people, play with their five year old and able to talk to them about my cancer. 

Janet tried so hard to hold back her tears but the fact that she cried to me made me feel so loved.  Her telling me that she could not stop thinking about Mark gave me strength.  I know that when the time comes that will not be my husband because he will be surrender by people who care and love us.  I know that we will have many looking out for Mark and most importantly the boys.  I worry about Mark being alone and the boys not have the "mom things" done for them.  I think all the time of all the little behind the scene things I do.  The past four years I have been so blessed to have the privilege to teach them so much.  On the flip side of that I feel like I have crammed a life time of lessons into four years. But after sitting next to that man at a soccer game I now understand my urgency more.  Thank you Lord for that smack of reality.  Thank you for helping me appreciate the time I have here.   Mostly thank you for putting people and situations in our lives just when we need it.  As I am writing this post I almost wonder if that whole incident even happened. Was that man for real or was he some kind of messenger.  Could his situation be so similar to ours with such a different outcome? Why was their out and mot us?  Whatever it was it defiantly shook me to reality and not let this cancer run my life. I once again reminded myself  what the doctor told me sucks but he is a scientist reading the scan facts.  The real doctor is the man above.  Mostly, I learned  that I need to keep the fight going no matter how hard at times it going to get. I have been in such agony lately and then the latest results came, that I've been wondering if God is telling me something; like relax and let it good.  But this guy woke me up and I realized God is saying, "Get your ass going and start fighting."  Not sure if God uses "Ass" but why not. 

Please keep all families fighting cancer in your prays.  Tomorrow I was asked by the American Cancer society to speak at the closing dinner for the Relay for Life. I will be speaking to all the survival.  I hate the word survival when people are still fighting but it is what they call those who beat cancer and are still battling.  I speak many places and times but this one is going to be tough.  Looking out to those who have gone through what my family is going through is really tough for me because I know the pain they have in there heart and in their uphill battle. So please keep me in your prays. Love you all.  Thank you for loving me through this journey. 

Until Next Time,
Sunny

Scan results

I know many are waiting for the results of my most recent scans.  Thank you all for the prayers.  I have to tell you when I am asked if anyone can do something for me and I ask for pray it is really what I need.  As many of you know,who are fighting carcinoid cancer, the answer to scans are not always straight forward and prises.  Carcinoid is such an odd cancer and one time it shows up so clear on scans and other times it just hides itself.  Hence the Zebra mascot.  So there was a lot that went into interrupting my scans this time.  Then Mark and I had to talk with the boys and figure out a game plan.  Once again not an easy task.  We like to do this with much thought and time.  Of course time is not on my side but I have to careful at just blurting out information that is not all summed up.  My friends and boys sometimes read what they want to read and not what I am actually writing. 

With all that said, the results were mixed.  There is evidence that the Swiss treatment, (Y90), is doing something.  It is still showing attachment to many tumors and some are being invaded.  There is no shrinkage at this time but that not saying it still can't happen.  Unfortunately there are several new lesions in several different places.  Some larger bone mets, explains all the horrific pain, and some small one in my left and only lung.  Which has always been clear and beautiful.  There is also action in the liver again.  However they don't know what that is until they compare those with the Swiss scans.  We are waiting for that.  The scans show the the cancer is speeding up.  But like I stated they are small and the lung is a big organ.  The question is how fast are they growing.  Many times you read about carcinoid cancer as being a slow growing cancer.  That frustrates me because MANY times that is not the case and much of the information on the Internet is outdated now.  My carcinoid cancer has never been slow.  When it is in its growing season is spreads like that bad honeysuckle I had filling my yard as a kid.  When its frozen out is stays stable then once it starts growing again it invades quickly.  My point being I need to take fast action on the new mets that appeared.

We have twp plans of action.  One laid out by Dr. Friedland, my oncologist, and one laid out by Mark and I.  Dr. Friedland changed a lot of my meds.  He put me one a weight gaining drug, I am way below 100 lbs., and wants me to start the chemo drug Sutent.  I am looking for any carcinoid patients that have tried it.  Please email you findings.  It has some nasty side effects and I am a little afraid I am not strong enough for it right now. However, I did go to pick it up and good news it that my insurance covers it.  BAD NEWS is my copayment is $332 a month.  But we are going to pay it, not sure how yet but God provides.   Mark and I are planning on going to see two specialist in the very near future to see what their recommendations are.  One is Dr. Liu in Nashville and the other is the famous Dr. Woltering in New Orleans.  Hopefully we can get in to see them in the next couple of weeks.  I am really worried about making the trip with the condition I am in but once again God will lead us. 

There is more but the above it the most important and most to be concerned about.  I have to say that all the support and love I get has really gotten both Mark and I through days when we have results like these.  I ask for more prays.  I especially need prays for my boys and Mark.  Watching me suffer so has really been a struggle for them.  I sometimes wonder if it would be easier to go into the hospital to get through things when they get bad.  I think its not fair for my boys and Mark to have to see me at my worse.  Not to mention I can not handle the pain at times either.  But Mark refuses to hear of any of that. 

Please pray for our family.  Please pray for pease and acceptance.  Please pray that when it get really bad I have the power to do the whole reach down and whip some fighti.   We will get through this looking like we know what we are doing.  Thank you all for reaching out and please continue it keeps me alive. 

Sunny