Oh how life can be so challenging…
Written on Tuesday, July 9th @ 8:00pm
I am sitting in my office, getting things ready for class and I can’t put off doing Crystal’s update any longer. The guilt sets in when I don’t update Crystal’s Story. I would do anything to bring awareness to her Cancer, to get prayers for her and our family. The blessing for me is the positive remarks I hear/read from all of you. The feeling you give us that you care and that we are not alone. Thank you.
Hope you all had a good 4th of July! We sure did!
We leave this week for Mayo. I asked Crystal yesterday if she has been thinking about this next doctors appointment. Her response is…I do what you do mom, the minute the thought comes into my head I just try to think of something else. Yes, that is what I do. I guess that is why I stay busy.
My dearest friend Paulette, asked me…So what are you hoping to get out of this next Mayo appointment? Well, I would love to hear that her Cancer is all gone. That it is a miracle and that there is no signs of Cancer in her little body. BUT I know that I will not go to this appointment thinking that way because then I will have let my guard down. For me to stay strong, I need to think realistically. The fact is…the Cancer is back. So I hope that the Chemo is doing it’s job. I pray that the tumors have shrunk. I hope that they can be surgically removed. I hope she only has a couple more rounds of Chemo to go. I don’t want to hear that the tumors are larger. I don’t want to hear that the Cancer has spread. I don’t want them to tell me we will just check her again in a couple of months and see where she is at.
It is a waiting game and I must say it is exhausting, it is heart breaking and it makes you feel for every person/family going through a journey like this. I hate it.
Here is Crystal & Storm, she had a pretty tough time with Chemo this last round.
Today, I listened to Crystal explain to someone how she read a book her sisters gave her, “Robin Roberts, Everybody’s Got Something”. She was saying it’s okay to be angry with God, he can handle it. You just can’t be angry with him everyday. Isn’t it funny how that little remark that Robin Roberts puts in her book would touch my daughter and to listen to Crystal talk about it at the right time I needed to hear it. It is a blessing.
Crystal’s appointments begin early Thursday morning. One of the neat things about Mayo is you get answers the same day or at least the thoughts for the next set of steps. We should have an idea by 5pm…Please, please pray for her. For strength, for positive energy and I thank you in advance. You will never know how much it means to me, to my family. Social media can be such a wonderful blessing when it is used correctly.
As for some of your messages. Yes, Cassidy did have her gallbladder removed last Thursday. She is doing wonderful. We learned from the pathology report that it was full of disease and scar tissue. Cassidy has had to deal with a lot since August of 2013. She has had some very sick days. And then the emotional part of it, that the doctors didn’t believe her. As she would say, “Mom everyone is worried about Crystal but I really don’t feel good. I feel bad saying it but it’s how I feel, mom” As a mother, what do you do, what do you say? I knew it was her gallbladder and honestly so did her family doctor but we are not the surgeons. Thank goodness for another set of surgeons in Cedar Rapids. Again, it reassures me you have to be advocate for yourself. Trust your gut. If you don’t care for the doctor, get someone else. As my girlfriend Kelly has said, listen to your body. It always gives you signs. Take care of it for it’s the only body you got. Somedays I personally forget that but I will defend myself, it seems that I am taking care of everyone else.
Cassidy getting ready for Surgery!
I wonder if I could round up all of my medical bills over these last two years, all of the emotional stuff that has gone along with this journey of Cassidy’s and send a bill to the other two surgeons that sent her on her way. Very frustrating but lets be positive, Cassidy is doing great immediately following the surgery.
As for Rod, his ankle is a slow process. It has been a long haul. It really is very difficult to see how much he has had to go through with it.
A little girl time before Cassidy’s Surgery, Courtney’s Trip & Crystal’s Mayo Appointment!
Courtney, she has made it to Ireland! This is a study abroad class at Kirkwood Community College. Crystal actually went to Australia for a month when she went to Kirkwood. Funny Courtney had no desire in leaving home, no desire in that class. Our girls have to pay for their own college and Courtney just wanted the cash to help pay for her college but I made it very clear…it is not about the money, it is the experience and that is what we will give you, take it or leave it. She chose Ireland. I am happy for Courtney and her fun journey, its going to change her life.
A new journey for Courtney!
But don’t think Courtney hasn’t had a bump, getting off the plane in Ireland and in 30 minutes learning that your debit card is not working put her in shock! Getting a message at 6:00am and not being able to help her gave me a heart attack. Guess next time she might listen to her mother on having a couple of different ways to get cash. A hard lesson for Courtney to learn but fun how her lesson still affected me. After 3 1/2 hours of worry and talking to the bank, it was taken care of. Again, people come into our lives for a reason…Thank you Blake & Denise! As far as my bank goes…are you kidding me, I am on her account and I just wanted to up her limit and I am sure if she has a problem with money you would have no problem coming after me. After wanting to speak to your manager funny how you could then change it. Looking for a new bank!
Needless to say I never ever dreamed this is how my life would be. There are days I am so angry, so bitter. My head hurts and my heart races but I choose to smile, I choose to look for the good. I just sometimes need a little help finding it.
The Next Step….
Written on Thursday, July 16th @ 6:35pm
What a long drive to Rochester last night, even a longer day & a crazy wait time in the waiting room this late afternoon. I would say this trip everyone at some point has been on edge. There were no photos taken.
As we are driving home I think of Crystal’s Story update, I find myself more exhausted than normal and when you are exhausted its hard to find hope. However, I would read your messages throughout the day and push forward with a smile.
Gage he always makes us laugh, Rod he doesn’t say much and Crystal she just smiles with the attitude I don’t have time for this.
BUT our prayers have been answered. Everything is the exact same. Next step….surgery. We will head back to Mayo on Thursday, August 13th with surgery following the next day.
As for Chemo they will determine that after her surgery.
Now the CR Spirits we do have a big show at the Iowa State Fair which Crystal & I won’t be able to make but the show will go on. Please if you are at the fair Saturday, August 15th at 5pm go check out the Riley Stage. I know the Spirits will dance like rock stars for Crystal & I.
Amy & Shane, no worries Crystal & I will be ready to stand up for you both on your special day Saturday, August 22nd. We love you! Amy as you say, “We’ve got this!”
So today is July 16, 2015 & we know Crystal is going to fight this ugly cancer again. As the doctor said she will fight it for the rest of her life and that is why we need to stay on top of it. And I know that a year from now fighting this Cancer or not on Saturday, July 16th 2016….Crystal will be walking down the aisle to begin her new journey with a man she will be proud to call her husband.
Thanks much for the update. KNOW that there are MANY who think of you and your family and are constantly sending prayers and good thoughts your way. Absorb them! 🙂
In our thoughts and prayers!
Coming back to Crystal’s Story and reading for the first time the last three journal entries . . . this is overwhelming to read about and so difficult a challenge for your family. It takes courage to tell these stories—this isn’t “reality t.v.” folks this is REAL-LIFE reality. I hope it helps you and your husband and daughters to share it like you do . . . and I happen to think it may help other people who find themselves facing the fearful unknown of cancer. It makes you feel so isolated when they say that “C” word. Then you think it is behind you and no, it isn’t over and life isn’t going back to normal because this nightmare isn’t over. So there is no normal and you just have to ride a roller coaster. I am on onlooker hoping and praying you all will be safe when the ride finally finishes. [And how about Cassidy—really sick herself and trying to get the docs to believe her—now THERE’S a story with some kind of a moral to it . . . but you’re right, listen to one’s own feelings about health issues and don’t be brushed aside.]
Not sure what to say about the p-NET “ribbon.” PNET is that tiny percentage of pancreatic tumors that aren’t adenocarcinoma. I’ve gone to so many of the PANCAN fund-raisers and there is one section set up for “survivors” and you find out that 1 out of 20 pancreatic tumors is a PNET but 9 out of 10 survivors are those who’ve had a PNET. Information is uncertain because statistically they are quite rare. Treatment is uncertain for the same reason and also there are at least four different groups of PNETs and maybe dozens once they start looking closely at them. Cancer treatments are being researched every year with hope and promise so hang on and fight and learn all you can about clinical trials. As for side effects of chemo, it is a fact that is beyond doubt that hundreds of thousands of patients have coped with that by using medicinal cannabis–this has been known for forty years or more yet the government for political reasons refuses to let doctors tell you this. But you can go to Oregon and get the medicinal herb and instructions how to use it. It is safe and it works. You can’t cross state lines and bring it back, however. You could also go to Colorado because even though you must be a resident there to obtain medicinal strains of cannabis, you don’t need to be a resident to buy so-called “recreational” cannabis and it works pretty much the same for chemo side effects.
I have talked with patients, their families, and medical caregivers about this for 30 years, and have always felt it was an outrageous injustice that this non-toxic herb which helps sick people tolerate chemotherapy is treated as if it were literally a crime (instead of a God-send) and then six years ago I had my own encounter with pancreatic neuroendocrine tumor (somatostatinoma.)
Not all doctors know or believe that cannabis helps patients with chemo side effects, but if you talk to patients who have used it, you learn what some doctors don;t know and what others know but are afraid to tell you. Good luck to all of you and especially to Crystal and Gage. We do not know the future and we must have faith.