So it has been little more then a month since my last MRI. Little more the 3 weeks since I discontinued taking the medication that makes me into someone I am not...but they believe will save my life.
So, what's next?? I should be restarting the medication or begining something new that is suppose to help keep the cancer from reoccuring but will most likely make me feel unlike me!
How do you choose pain for yourself?? I guess you blame them for the decisions, hold them responsible for the decisions...! If they say I MUST take this medication then it takes the choice out of my hands. I can blame them when I feel like crap, when the headaches worsen, when I find myself emotionally out of control.
Because HOW can someone choose this for themselves??? But then someone asks you...How can you take the risk by not taking it?? Risk a reoccurance of cancer. But the truth is they really are NOT sure that the medication will do that or that it really has yet!! The studies are uncertain to say the least. But it is the only thing they have to offer. An offer that sometimes seems like NO choice at all! I am not alone in this feeling. I know several breast cancer patients on these medications and most of them feel similar. We all struggle with the choice!
It isn't to say that the doctors want to use scare tactics to make you decide on these drugs... but my doctor tells me that in some cases the patient really does have a choice...he feels I do NOT!
So, again...how do I choose pain!
They will ask if my pain has been better off the drug... I am not really sure... Headaches are pretty constant but not as severe. My diet is, at best, slightly better, but I still eat VERY small amounts and my meals are rarely complete and rarely more the once a day. The vomitting seems to have stopped and I am not dehydrating as much. My weight, while about 10 lbs lighter, seems to have leveled off. But they don't believe the medication was really at fault for most of these symptoms...but this was a trial to see how I felt off of the meds.
So, now we move forward. My next MRI needs to be scheduled for the end of May. Am I ready?? Not really sure. If the cancer has spread, I don't need to take the meds in question... not a GREAT trade off! If it hasn't spread, how do we keep it from truly reoccuring??
My radiation ocologist put it really clearly. He said "Cheryl, welcome to the world of cancer. From here on end you will be on the cancer rollercoaster!" I get it now. No one wants to do the wrong thing, no one wants to MISS something on a film, no one wants to be the one to make the desicion to do NOTHING! Doing nothing doesn't feel right medically. So, everytime you have a test they look deeply at the study to do their best NOT to miss something. Sometimes they OVER read it! I guess they feel this is better then the alternative. But this is the roller coaster Doug Fein was referring to. As a cancer patient you are always waiting for the next drop...then the next hill. One day you are okay, the next they aren't so sure! This is definitly the what we live with. I have been on this roller coaster since my last MRI. Do I or do I NOT have cancer in my brain? No two doctors that have read the films can agree on anything!
So moving forward for me means deciding to go back on a medication because it just MIGHT save my life and having yet another MRI to check my brain to see if we need to worry!
I have made one decision though... Everything they want to test must be completed before the last day of school for Christian!
I am OFFICALLY taking the summer off from CANCER! I am going to enjoy planting my flowers and then sitting and watching them grow! I am going to spend days swimming with my son and making sure he enjoys the summer with his friends. I am going to take short trips with Len and Christian to places we have always wanted to go. I am going to spend time with the friends and family that mean so much to me! I am going to do all I missed out on last summer. I am going to take the summer off from CANCER!
I can only hope the same for my "group"... all the other people in my life that are battling this unfair opponent. I know Aunt Jackie is giving it the fight of her life. They have discontinued her treatment as well because it isn't working. She will be going to Yale New Haven to see another doctor... to see if there is a study or something they may have for her. We will see... maybe she will taking the summer off from cancer!
Lou had his summer off from cancer last year and he lived it his way...to the fullest. He has his summer off from CANCER! I am so glad you had your time off from cancer Lou!!
Every cancer patient deserves and should have time off from cancer.
So, I will go forward, have my MRI, go back on my meds... and then do my best to IGNORE cancer for the rest of the summer. I will continue to reach out to those people battling this unfair opponent and help as many people as we can. Along with the help of those people spending countless hours helping us make this foundation bigger and better everyday!! I send my graditude to you, Agi, Nancy, DonnaLynn, Deana and now Pete, who is going be helping with out website and all the people who reach out by showing up...by offering their help, by being there for fundraisers, by being along side me and being our force that keeps us going! I thank you all! It is with you all that this foundation will continue to be my life and my legacy! I love you, Agi, not just for what you do but for who you are, for being there for me through ALL of this...the cancer, the blood clots, the headaches and all the work you do for this foundation...you are my rock...Day by Day!!
BTW...please feel free to post you comments... they are truly valued! Good night...le
Caretakers....where would cancer patients be with out them??
Cancer makes most of us needy!! Some of us more then others... but definitly needy!!
I was one of the ones that was REALLY needy. This was very out of character for me!! Maybe one of the most difficult things in dealing with cancer. And I owe so much to all of them...my caretakers!
My husband, Len, has and still does take care of so many of my daily needs. Since I began chemo he has taken on ALL the household responsibilities and the responsibility for our son. After I developed a blood clot and was limited to the use of my right arm, suffered from extreme fatigue and weakness he has had to assist in my daily routines of showers and dressing... even walking down the stairs required his help!
Our daughter, Deana, helped pick up the slack with Christian and my needs. Hospital stays for me meant a live in room mate... Deana! She became a fixture the nurses looked forward to. She spent every night with me on a chair that laid open! If I moved, she was up! She was up and waiting for Bruno Fang every morning at 6 am with a list of questions and challenges for answers. She made runs any where she could to try and find something I could or would eat...When I was home it was a regular event for me to call her cell phone from my bedroom to her in another room and ask for raw celery (a craving during my chemo!!) or some thing completely random. She stood and watched as Judi shaved the last strands of hair from my head... bought me scarves and hats to help me cover my baldness! She was my cheering section every day through all of it...the pain, the sickness, the degradation... all the things this unfair opponent brings to us!
My youngest, Christian, only 12 at the time this all began... was never uncomfortable with my baldness or the way my body seemed to be wasting. He came home from school everyday and came to my bedside and held my hand and comforted me. He would bring me anything I wanted or would just lay with me and watch a movie. He lost some of his innocence!
My oldest son, Rob, living and working in Las Vegas and California made daily calls to me just to check up and make sure now wasn't the time to come home! Then drove several times cross country to spend weeks with me as I healed. He planned a family trip for all of us to Key West for Christmas & New Year holiday.
Several friends and patients were there for us. Francine ran to pick up perscriptions, "babysat" me when Len had to be away, spent time sitting with me after surgeries. Sue & Carleigh brought meals and their famous banana bread! Carol planted flowers in the rain because she knew how important they were to me! Debbie brought meals regularly and made my daughter a fan of the best chicken pot pie ever! My sister in law Sue brought dinner from Connecticut and one of THE BEST nieces ever, Jodi, would drive from Connecticut to just spend the day! Marianne would make dinner and bring it to the house. Our Psuedo-daughter Cynthia came on several chemo weeks to make dinner and spend time with Deana. I could never forget the wonderful chicken dinner Stacy brought the day after a chemo treatment! My other BEST niece ever, actually my NIL (niece in law) traveled from Virgina enroute to Ct and would spend the day so I could have my beautiful Great niece "CRAM" to cheer me up! She managed to bring my nephew with her too! So many people really did reach out and help during some of the most trying times.
When I think of these people I can't help but think of brother who passed away October 7th... he called me every week to make sure I was okay and to tell me I would be fine! I miss his calls and his reassurance... I was sick but we lost him!
Now I am seemingly on the mend however, my needs continue! I still can't shave under my own arms or completely dress myself. I can't take a shower alone in the house, can't drive, still can't use both my arms! Somedays I can't get out of bed or off the couch! I am still on daily injections in my abdomen that Barbara comes daily Monday through Friday to give me so I can get a break from doing it myself!
I am back to working limited hours... Thank God the office is right off the kitchen! I try to cook meals and occasionally I am able to get up occasionally and make breakfast for Christian! But most days the full wieght falls to Len... my care, house/yard care, Christian's needs, patients, office... all of it!
So, where would a cancer patient be if they had NO ONE!! If their partner had to travel to the city to work... couldn't be there for their small children?? To help them make it through the day, take them for treatment, shop... the list goes on! This is the reason this foundation is so important! Not just for the cancer patient... but the FAMILY! Cancer effects the WHOLE family... friends included! Caretakers need a break... families need help! They need support... emotional and financial. They need it for a LONG time! Cancer isn't a SHORT illness. It hangs... reoccurs... effects the rest of your life!
Help us help the families cancer is effecting. Help us make their lives just a little easier, a little more tolerable. This foundation is needed! Help us fill a need...day by day!
Be sure to support a CAREGIVER! Ask how they feel...give them a hug too!
Tonight I have invited a guest blogger and I would like to Thank Alesia for taking the time to address yet another way cancer effects a family! I hope you take something away from this that helps you help someone else battling cancer.Alesia Shute is a childhood cancer survivor from the age of 7, and is the author of Everything’s Okay (www.everythingsokaybook.com) the founder of The Alesia Shute Foundation, whose mission is to improve the lives of families facing childhood disease, both by making hospital stays morecomfortable and by funding research that will treat or eliminate childhoodillnesses.
Getting Stronger by Leaning
By Alesia Shute
When I was seven years old, I was diagnosed with cancer, and spent my childhood in treatment and recovering from surgeries. Now, fortunately, as a healthy adult, I am able to work with families whose children also battling the disease. I wrote my memoir, "Everything's Okay," detailing my illness and recovery, in hopes that others would find inspiration and hope.
Parents of kids who are chronically ill are unbelievably stressed. Not only are they worried about the health of their child, but parents also must cope with mounting medical bills, performing adequately in their jobs and maintaining a sense of normalcy for any other kids.
Too often, these parents try to be too strong. They try to handle everything on their own, when in reality, calling in reinforcements on occasion can ultimately make your family stronger in the long run.
· Focus on the whole family, not just on the sick child. Although the parental instinct is to spend all of your time with your sick child, it is important for everyone that you spend quality time with your other children. Instead of always asking a neighbor or relative to watch your healthy child while you stay at the hospital, switch it up, and ask someone to stay at the hospital while you take your healthy child out for ice cream, or spend time going over homework.
· Carve out couple time. Date night when you have a sick child? Ironically, yes. Whether it's sharing a glass of wine while watching a DVD, or taking a walk around the block, spending time as husband and wife instead of always seeing yourself and each other as the parents of a sick child is essential for maintaining your marriage.
· Say yes to help. Friends will want to help, and we're often too independent or to be honest, too frazzled, to accept it. But you're consumed with the whole sick thing, and that’s your focus, and you're exhausted at the end of the day, so why not let people help you? They will probably need you at some point in the future, so it works both ways. Let them make meals for your family (so you can spend time cuddling your little one, or having that wine with your spouse). Scribble a list on the fridge of things you just can't get to, i.e. laundry, vacuuming, dry cleaning drop off or pickup, lawn care, and when someone says, "let me know what I can do," tell them!
When a family member is chronically ill, we're understandably in crisis mode. But we really can't maintain any quality of life when we're in a constant state of emergency, which may last months or years. As hard as it may seem, incorporating as much normalcy into your daily lives as possible and strategically leaning on your supporters, will give you strength for the long-term battle.
Somedays are good and some days aren't so good. This was a GREAT weekend. Before I got sick, I think I may have taken some of those days for granted! Not so much when those days are fewer in between!
The weekend started with a WONDERFUL concert/competition for the Crossroads Jazz Bands. Christian had a solo and did a fabulous job!
Saturday we had a WONDERFUL day celebrating Allisia and Bobby's wedding. We were blessed to spend the day with GREAT friends! One thing I look forward to now is my time with great friends! Sorry I had to end the night a little earlier then everyone else but I had an additional commitment!! Either I have nothing to do or multiple things to do!! I headed over the the Greenbrook Tricky Tray! Spent money for a good cause... and won NOTHING!!! LOL
But again, had the opportunity to see good friends!
Today was bright and sunny and for the first time since I was diagnosed, I was able to work in my yard and enjoy the weather!! I was able to trim all the bushes and prepare my flower boxes! I have never been so happy to do yard work!!
Again, one of things cancer gives you... an apprecitaion for things you LOVE.
My friend from High School is battling ovarian cancer and doesn't like yard work... to her I say, Deb, use the C- CARD!! Life is too short to do the things we don't like... if we can get away with it!! Cancer won't make you love things you don't like but should give you more joy in doing the things you DO love!
Enjoy the weather, take time to enjoy life and the things and people you LOVE! Reach out to some one who may not be having as easy a time of it and see if you can help. After all, that is what life is really all about... helping each other... day by day!
First I want to thank ALL of my blog followers. You are the people that get our word out...the people that help others know about us...so THANK YOU!
Tonight I don't want to blog about me or bitch about cancer... well not exactly!
Instead I would like to share with everyone how important this foundation is, how important it is to me and how many people's lives it can help!
We have been fairly successful with the small fundraiser we have had but we need to do more, push harder, raise more money, get more people involved!
The people are the important part. We need bodies to help plan events, design flyers, post flyers places, canvas businesses for donations and make phone calls!
Fund raising is a big job and cancer is a big opponent!
I don't think I know one person who has not had their family or someone they know affected by cancer! It is the least predjudice entity... it doesn't care where you are from, how much money you have, what you do for a living or where you live! It can strike anyone!
This is a universal problem.
When cancer hits a family the family can NEVER be prepared. It can help to have great insurance, money to spare...but with out people, support...daily help...it can be a very lonely illness. Unlike other illnesses, it can drag on for a very long time. I have been know to explain it like a death...when you lose someone everyone is there for services and maybe for a few weeks, maybe a month. But then everyone needs to go back to their lives...but your life and the life of those closest to you just stops! People dont mean to forget or move on...they just get busy...with life. But not you or your family. You are somewhere in limbo.
This is the reason for our foundation. To help those people. Be there to provide meals, run errands, offer support, help with housework and the never ending reems of paperwork!
But we can't do any of this without people! People and money and connections!! Everyone can do something...if not financial then consider donating your time with something you are good at. Or perhaps your company has a program of matching employees time donations with monetary donations. Maybe you know of a business that may be interested in donating or can donate a service.
Please sit down and consider what your life would be like if, GOD FORBID, you or some one you are close to was diagnosed with cancer. What could you do to make someone elses life just a little eaiser, a little more comfortable! Please think long and hard....we need bodies! Bodies to help us keep this foundation on its path! Think about what you can do to help!
I must take a moment to THANK all of you who have been there...been there for my family and continue to be there for this foundation. You will forever hold a special place in my heart! Those of you who continue to show up when ever we have an event and support us in every way you can!! THANK YOU!!
Please consider what you can do to help some family battling this unfair opponent...the only way we can....day by day!!! THANK YOU!
BY the way....NEXT time I will bitch about cancer!!!
As I lie here awake... again... in the dark I sit here and realize why I have not been blogging. So here I sit, in the dark surrounded by the sounds of sleep all around me and I will tell my story of the past 2 weeks.
The last 2 weeks have been anythng but uneventful! Easter was just a day ago and it was spent with friends and family after Deana, Len, Christian and I shopped, cooked, baked, cleaned and prepared to celebrate the holiday. Tuesday the 3rd was a great day! We spent the day at Fireside Grill & Bar. We were blessed by seeing some many long ago friends and new friends. Patients came out in support of our cause! I felt so proud when a patient said to me, "where else would I be, you always stood by me"! We shared food, drinks and conversation well into the night. We hope a good time was had by all. We would like to extend our thanks to everyone who come out in support of our cause...the friends we knew and the new friends we made! THANK YOU! And A BIG THANK YOU TO Steve, John, Nick and all the wait staff at Fireside...you guys were the BEST!
However, leading up to this Tuesday...was the Tuesday before... which as some of you know, was the day of my MRI for my brain. Within one 1/2 hour of the test we knew we were in trouble. By the time we arrived home the test result was on the office fax machine. Len and I began to read it together and for the first time I truly became a cancer patient...all I read was metastaic carcinoma...I couldn't read any more. I fell apart... I cried for my diagnosis for the first time! We spent the next week having the study read and reread by specialists. Everyone one of them saying something different. Looks like, maybe, could be, not sure, uncertain at this time! All things you really don't want to hear. We did our research and read the results clearer and knew we could be facing leptomenigial cancer which has a life expectency of 7 months. So many things went through my head.... the bridges I may have burned in the past, the friendships lost, the things left unsaid... What do you do when you have 7 months of living to do?? Having just lost Lou and watching how gracefully he left this plane I knew I wanted the same thing for myself and my family! So, while I waited for new doctors to look at my test and probably not really give me a definitive answer I thought about what I wanted to do. I did come up with a list. The following Tues...the day of our fundraiser, I received a call from Bruno Fang...again... this time with yet another interpretation of my scan. Well this doctor found another AVM on the other side of my brain that NO ONE else saw however, he is not convinced that the other thing they see is leptomenigial cancer...but if it isn't he really can't tell us what it is!! So, what does this mean?? I could under go 3 lumbar punctures on different days...the first has a 90% chance of false negative, then a second with a 50% chance of false negative and then a third with a 30% chance of a flase negative. Again, what does that mean?? After all that painful, invasive testing they may still not know if it is positive or not!
Our decision now is, we have discontinued my meds that keep my cancer from coming back, (supposedly for some people) for 3 weeks at which time if my severe symptoms of pain have subsided we can wait 2 months and rescan for this cancer. If the symptoms to not abate then it is more likely something is going on in my brain and we would have to move forward. Moving forward could mean lumbar punctures and/or the diagnosis of a cancer that has NO treatment. Do I really need to know this to proceed with my life?? I don't think so! I have stopped the medication, I am waiting to see if my symptoms get any better...not as of yet...and then i beleive we will just wait for the 2 months and re-MRI my brain. I believe 2 months is soon enough to find out anything. To find out I am going to live longer then 7 months would be nice but I will continue to LIVE my life that way with or with out those words! And if I do only have 7 months??? DO I really need to know that!!
So, here is my plan...I am going to do ALL those things that came to me in the days that I assumed I was dying. I am going to love my husband, my children, share and do the things I want to do and I will take the time to repair any bridge that I may have burned with something I did, didn't do or even if the bridge was burned by someone else. There are friends in my life that seem to have drifted and some of them I am unclear as to why...those are the bridges I need to repair. Family bridges...well, the family and friends that shares this battle with me..I just need to love them more, enjoy them more and be sure they realize how much I appreciate them! I will take the time to put into words the the things that we never seem to get to say to each other....I will do all these things no matter how much time I have...because really...how do we ever know for certain
So, Love deeper, speak sweeter, give forgiveness you've been denying...if you get the chance, live like you were dying! I will continue this until my dying breath and live each day as if it is my last...day by day!
So, I hope you understand my reluctance to blog this event in our lives. We needed to share it with family first and then I really had to come to my terms with what it all means to me. But the people that take the time to read my blogs...you are family...because family takes time for each other...no matter what! Thank you for all your past and future support! Keep your eyes open for all our upcoming events! Goodnight...I Love you all! Please feel free to post your comments...It really helps to hear your thoughts!!