10(really 11) things to say or NOT say to a cancer patient

In the past four and a half years I have had so many people ask me how they can help a friend or loved one who was just diagnosed with cancer or what is the appropriate thing to say. I have been keeping notes the past few years and have finally come up with my "do" and "don't" list. I have ran this list by a couple other cancer patients and I am fully confident that anyone that has been faced with this monster would agree with me. And....there are so many that could be added, but I have listed my top ten. And please note....if you have said some of these things to me or another cancer patient please don't be offended that they made the list! LOL...no one plans for cancer and there is only really one simple polite response, which I will give at the end. This is all done with a little flair and some laughs, but at the same time it is very serious advice. I love each of you and hope you enjoy my list and maybe learn something. When a loved one or friend is diagnosed with cancer, if you are like me before I was diagnosed, most people are first of all shocked! They usually say with that confused squishy eyebrow look, "What? Oh no." I remember people looking at me like I was speaking French or something when the words came out of my mouth, "I have cancer." Believe me, the words tasted as bad as they sounded. I am almost five years into this and I still can not believe it sometimes. Okay...... so here it goes. 1. PLEASE, I beg you under any circumstance, when someone tells you they have cancer do NOT tell them about someone you know who had cancer and died. Even if you helped this person through chemo and were by their side the whole time.... do not even bring that up. I can not tell you how many times someone has come up to me and said, "Oh, my 'so and so' had cancer. They fought it so long and were so sick and it finally got them." If you know someone that has SURVIVED..... DO tell us about that person. Give us their phone number!!! We love to hear success stories. 2. DO NOT give medical advice. Even if you are a cancer patient and are helping a new patient. Do not tell a person where to go for treatment. This is a very intimate personal decision that is based on so many factors that are really beyond our control. Whatever the patient decides to do, or not do....respect it. Period. 3. DO NOT tell the cancer patient to start eating more lemons or blueberries!! This has to be the MOST frustrating thing I have had happen to me. I PROMISE YOU if a lemon, blueberry,asparagus or hydrogen peroxide could cure cancer there would not be a lemon one to be found on this planet. Diet is important, but foods do NOT cure you. 4. If the person has lost their hair do NOT bring it up. Do NOT ask if they are wearing a wig. Just look at them as normal as possible and don't stare at their head. Instead of asking if they have lost their hair just simply say , "You look beautiful today." 5. DO NOT ask breast cancer patients about reconstruction and don't stare at the chest. I am still appalled at how many people ask about reconstruction. The only people that are okay to talk about that are their spouse and another 'sister' who understands how personal that is. And please do NOT say, "well, now you get a boob job." Reconstruction is FAR from a boob job and requires LOTS of surgery, scars, drains and time and extremely painful. 6. ALWAYS ask a cancer patient how they are feeling. No matter how much time has passed......ALWAYS ask. 7. If the patient is going through chemo do NOT do pop in visits to their home. Always call first. Bring them something that will cheer them up. Something that has NOTHING to do with cancer. 8. Do not say "I'm praying for you." unless you really are. This phrase has become so misused. Instead of saying, "I am praying for you," why not stop what you are doing and pray over them and with them. 9. If the patient has children, offer to take their kids somewhere fun. Such as movie,etc. Get the kids out of the house! 10. And my biggest peeve of all is this one. If someone does pass away from cancer PLEASE when talking about them do NOT say, "Well, they were sick for along time." Being sick for a long time does NOT make death okay..........EVER!!! I promise you, us young moms with small children would live being sick everyday........cut off all of our body parts........if it meant we would be able to stay on earth and raise our children. 11. And okay, so one more..........The absolute best thing you can do for a cancer patient is LISTEN. Just be there and listen. And if you feel the need to say something the only thing really that is okay is to say , "I am so sorry this is happening to you. I love you." Kristi still a survivor

Stupid appendix.....who needs it anyway?

I have put off writing long enough. I wanted to update everyone on what is going on with me. First of all, I am okay. When I came for my checkups a couple months ago to MD Anderson everything checked out okay...as far as the breast cancer goes. My blood work is perfect, my tumor markers are perfect and all my scans were good. But, inadvertently when they were scanning me they saw something in my appendix. They told me they were not worried about it. My oncologist told me I was okay and he would send it on the appendix specialist here at MDA and they would look at it and get back to me if they thought it was something that needed to be addressed. So, Stan and I headed home to Abilene.....thinking all was good. As we were about three hours down the highway.........a huge storm was approaching us and I was nervous. As I was driving into the storm my cell phone rings. Out in the middle of NOWHERE.......a lonely, two lane highway. I notice it is a Houston area code and I answer it. It was my oncologist's assistant. He said that the appendix doctor had read the report and wanted to look at it further and I would be rescheduled to come back to Houston asap. I, of course, have a melt down moment. We pull over and I lose it in a bar ditch! By the time we get back to Abilene I have gotten myself together. The oncologist does not think it is the breast cancer that has spread. So, that is a HUGE plus. All my blood work is perfect. I feel great! But, bottom line is the appendix has to come out. So, I talk him into waiting until after Allie's graduation. So, here we are again. Tomorrow morning I am having the appendix removed. Normally this surgery is fairly easy. But, of course, I can't do it the easy way!!! They can't do it laparoscopic because all my other surgeries have caused too much scar tissue. So, it will be a big surgery done the old fashioned way. Cut me right open. Depending on what they find when they are in there will depend on how much they take. Hopefully it will only be some stupid stuff in my appendix that is fairly common and not be cancer. If it is cancer,(they will biopsy it right there while I am under) they will have to take part of my colon. Depending on how far it is in the colon. Appendix cancer is extremely rare. Only 500 people are diagnosed a year in the USA. But, again, I stress that my doctors are telling me that it all looks very promising. So, family, friends, prayer warriors, please pray for an easy surgery. No cancer. And an easy recovery. My parents are here with me, Cole and Stan. I am not worried about it. Just upset because I don't have time for this. I am not gonna have many organs left! At this point, I am just like "take it all!" :) I will update you when I recover. Stan and my Mom and sister will update facebook. I know God is in control. But, like I told some of my family today, I think I am finally accepting that I am one tough cookie!!! I love all of you, kristi ~ never giving up

"I pictured you as a blonde."

The first time I ever heard her name was at church almost two years ago. Stan and I were sitting in a bible study on a Wednesday night and the pastor asked for prayer requests. A lady raised her hand and said she had a student in her nursing school who was just diagnosed with an extremely rare form of kidney cancer. She was in her early 30's, her husband was in the air force and they had two small children. I wrote her name down on a piece of paper and after we were dismissed I got her phone number from the lady who requested we pray for her. I searched for her on facebook later and could not find her. A few weeks passed and once again I heard her name at church. She had her kidney removed, but there was no treatment for her cancer because it was so extremely rare. I also found out she was headed to MD Anderson the next month after she recovered from surgery. So, a few weeks later, I texted her when I knew she was in Houston. We started a friendship that first text. A friendship was born out of a common fear............the fear of leaving your young children without a mother. She was my only friend that was stage 4, like me, that was still living. We talked via the phone for several weeks before we actually met in person and for some reason we were unable to find each other on facebook at the time. (I still haven't figured that one out) We decided to meet for lunch one beautiful, sunny day at the Olive Garden. So, as I am driving to the Olive Garden that day I realize that I have no idea what she looks like. I text her and say, "What do you look like?" Ha ha!!! Now...... it probably seems strange to you that are reading this that I wouldn't even know what a friend looks like that I would be willing to move heaven and earth for, but THAT is what the fear of leaving your children does to you. You don't even have to know anything else about each other. That fear instinct is a comradery that goes beyond explanation. She texted me back and said, "Ha ha!! I have shoulder length brown hair." I remember thinking, HMMMMM......I just always pictured her blonde. When I arrived I saw her immediately. I told her, "I thought you would be a blonde." She said, "That is so funny, Kristi, because I thought the same thing about you!" And ...just like that......two souls were united. We talked for hours and days for the next year and half. After we got past all the cancer talk we actually realized we had a lot of other things in common and would have been friends if our paths would have crossed on another trail. But, it didn't. We had met on the path of cancer. We were young, looked healthy, and never would have imagined in a million years that cancer would be our story. She and her family moved last summer back to another state to be closer to her family. She knew she was incurable, but held out on the hope that God would heal her. The picture to the right is the last time I saw her. Now looking at it I love the fact that the sun is shining on us. In the midst of our despair it is still shining through. Not sure why.....but that gives me a little glimpse of peace looking at it. She left this earth last week. She didn't want to leave. No one does. I have lost many friends over the past four and half years to this disease, but this one hits the hardest. Her kids are left without a mother. NOTHING is okay about that. As I prepare to travel next week for my own 6 month scans, I am once again reminded of my own mortality as I read her obituary. She was real......sitting right next to me.......crying......laughing....planning.....worrying......questioning.......loving each day.......praying......begging......suffering...and now she is gone. I will never forget my friend. And as I prepare to leave next week for my checkups I take her with me. She will be with me as they stick those needles in my arm......she will be with me as I am slowly rolled into the big machine and listen to it say ,"Breathe in.......breath out......hold your breath.......breathe." She will be with me as they read the results to me as I sit in my little gown. And in a strange way she will be the reason I am able to do any of it at all. It is time to find a cure. I love all of you. ~ Kristi

"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." Elizabeth Edwards

I realize it has been since May since I have updated my blog.......ALOT has been going on since May and I guess I just couldn't find the right words or time to sit and update. FIRST of all.......I am still cancer free!! I am so excited to be able to type those words. I am extremely blessed and lucky to still be keeping this cancer AWAY....and I promise I don't take a day or breath for granted. Stan and I got back form Houston this time about six weeks ago. My struggle with updating lately has been that I have some sad news to report. My precious Mom was diagnosed with Multiple Myeloma(bone cancer) in July. Now, for those of you that know my family and have been keeping up with my cancer journey you can just imagine what a blow this has been to us. I don't want to go into too many details because it's my Mom's story to tell, but, bottom line is she was perfectly healthy and fell and broke her shoulder........that is how it was discovered. She is facing a stem cell transplant soon. Although I don't understand it all .....why are we having to go through this again.??? I do know that God knows the plan. I THOUGHT I knew a lot about cancer, but let me tell you, I have learned ALOT from being on the other side..........It is so very very strange..surreal...and almost some days I feel I am walking around in a fog... to actually and know what my Mom is going through and to fully understand how she is feeling. It is almost some days unbearable. But, My Mom is going to be okay. I just know it. She has to be. I love you Mom! Cole had to go with us six weeks ago for my check up at MDAnderson. My parents were unable to keep him so he just went with us. Stan and I made it like a mini vacation for him and he was an absolute angel. I just kept praying for God to please not let my scans be bad this time with him there. I have been there so many times now and I just didn't want to get a bad report with my little man there. I had prepared myself mentally, should they be bad, and a dear friend of mine told me that,"God forbid they are bad Kristi, but, if they are....you are just going to be strong and be Cole's mommy in that very moment. You are not gonna fall apart. You are going to stay strong for him." And I clung to that advice all week. I didn't even think Cole really realized why we were even in Houston until the day of my results. Stan and I do not talk about it in front of him, but let me tell you, he is one smart little boy. We had just gotten back from NASA space museum (which is a whole other story I will tell later) and my appointment to get my results was at 4:00... Cole and I were killing time so we walked down to the hotel restaurant and he got some ice cream. I was a total wreck inside but my face had a smile plastered on it for him. He was sitting there eating his ice cream and I was looking at my phone. Out of nowhere he said, "Mommy, what if you get bad news today?" I looked up and can just imagine the look on my face and I said "What?" he repeated again, "What if you get bad news today?" My friend Jennifer's advice kicked in and I just looked at him with confidence while my stomach did a flip and I said, "Well, if I get bad news today then I will just take some more medicine and it will be okay." whew............without skipping a beat he said, "okay. Can I have some more ice cream?" "Yes, you may," I said. Inside I was thinking (you can have anything you want kiddo.....like right now would be the perfect time to ask me for that brand new truck you are gonna want in about 9 yeras. ha) We then finished and went and got Daddy and headed over to the hospital to get the verdict. There is really no way to describe what that feels like to be waiting on cancer test results. I have tried to describe it before, but unless it's you, you just don't understand. It is a surreal, weightless, feeling...........waiting.........knowing that within a matter of seconds your life is gonna change. And this time I had my 7 year old with me and he had to go with us into the verdict room. God, please let this one be okay I kept thinking. Then as we are sitting there in the big waiting room I hear my name..."kristi rodriguez." And like that.....it is time to know....so I get up with legs of cement...I hug Cole and I go back...I was going to just do my vitals first and then Stan and Cole would meet me in the room. Well.....my normal nurse was not there. A new nurse was weighing me....taking my blood pressure....asking me questions. My regualar nurse (who is also a cancer patient herself) always tells me my results the minute she takes me back..So, I am a bit nervous because she IS NOT HERE!!!!!! Who the heck is this new person? So, as she is taking my blood pressure I ask..."So, do you have all my test results?" She responds. "Yes, but the doctor wants me to put you in a room and they will give them to you." dum...dum.....dum............I almost pass out. At this point I see Stan and Cole walking down the hall.......so....we all go in a room. I am really trying with every cell in my body to hold it together. I change into my gown and we wait. I don't tell Stan what I was told because I know if I tell him then it will become real and I don't know if I can stay in the room for the verdict. So....me and Cole are looking at a magazine and my angel walks in. My NURSE IS HERE!!! She had been tied up with another patient and she walks in and says..."Kristi...everthing looks good." I say..."Where WERE YOU!!!!!??" hahah! She says, "I told them you were going to freak if I didn't do your vitals." then she winked at me. For you see....she is probably not supposed to tell me my results....I don't know....and if they are ever bad, she probably will not tell me. But, this time they were still good and that is all that matters....thank the Lord...Hellelujah.....Amen.....SO, we celebrate that evening with dinner and a trip to Toys r Us. whew!!! dodged another bullet.... Now, I go back in 4-6 months for another checkup. He said it was up to me...and I have been pryaing to see if I can handle waiting 6 months. The jury is still out on that one. Please pray for my Mom. She has a road ahead of her. Pray for my Dad. Their lives have been turned upside down with this...We need lots of prayer for peace and good results with her transplant. Go hug your parents. Don't take one day for granted. I love all of you. kristi- still a survivor

Thankful for my limp

As I prepare for my trip this coming week to Houston, MDAnderson, I am limping around my house......trying to do laundry......took both of my kids to the doctor in the past two days.....limping in the middle of the night to get Cole a breathing treatment........limping down the Walgreens aisle that sells crutches........trying to get my house in order to be empty for a week, etc. and I am soooooooooo grateful for every bit of it. I hurt my knee at Relay for Life last Friday night. I am gonna try to not complain......but, dang, it HURTS!!! I usually can mask my pain and ailments, but this one I am having trouble with. After almost a year of preparing this year for Relay for Life 2013, we pulled it off last Friday night at ACU. I was so honored to have been asked to be on the committee this year and although it was a lot of work, I enjoyed every minute of it. We did a flash mob zumba dance thingy and that is what has hurt my knee. We practiced for a week for this and I have not ever used muscles in my life that I used for this dance. My cheerleading days are loooooong gone and my brain didn't know that. But, what fun I had dancing with my daughters, niece, sis and mom and all my friends!!! So, I am hoping and praying that I have not done something that will require anything more than some extra pain meds and a wrap and occasional crutches, but we shall see. As I limped my little Cole into the doctor's office two days ago I realized how lucky I really am. Cole was running 102.7 fever and his throat was covered in white and red nasty things. As I was sitting in the doctor's office waiting, I realized I was grateful for strep throat. As I limped back and forth to the bathroom with Cole, at least 3 times, trying to get him to pee in the cup, I realized that I can do all this with my limp. When the doctor confirmed it was strep I was so grateful for it. I was grateful for it because my mind immediately went back to Friday night to the two little girls I had lead the survivor lap. Callie and Landry. Little girls that haven't even reached the age yet that requires double digits. Little girls that have been fighting for their little lives sooo long. I have been praying for these two little princesses for a very long time and finally got to meet them Friday night at ACU. Looking at them you wouldn't even know they were sick. Beautiful little girls with a ton of family love surrounding them like a big white fluffy cloud. As I knelt down Friday to get eye level with them I was beyond humbled. I felt like I knew them. There was a connection they don't even realize because I know all the physical stuff they have been through. I am glad I had on my sunshades because I was full of tears. I met their parents as well. I can't even put into words what that felt like.......meeting their parents. Knowing what I have experienced with chemo and fear made me feel some connection to Callie and Landry. But, I can NOT EVEN phathom what these parents go through. Their eyes were full of a fear I have never known. They were also full of such pride and joy as they watched their little baby girls lead all the survivors. As scary and confusing as cancer is to me, as an adult, and the fear of leaving my kids without a mom possibly one day is ONLY topped by the fear of losing my child. And as we came around the end of the survivor lap I saw Rex Fleming's Dad. Rex lost his fight not too long ago. He was just a little boy. I don't really have any words because I don't understand why these little children have to get cancer. I know there has to be a reason, but it is just so unfair. It's easy to think my cancer may have come from something I may have been exposed to in my life or eaten, but I have had a full life. They are just little innocent children. So, as I was limping Cole back to the car and giving Cole his medicine I thanked God for his strep throat. As I sat with my beautiful Allie the next day because she was sick too, I was grateful she only needed cough meds and antibiotic. If you have healthy children I want you to thank God for their health today. And as I will inevitably see sick kids next week at MDA, I am gonna be grateful for my kids strep throat. Don't take a day for granted because it can all change in the blink of an eye. So, those of you that pray for me and my checkups next week please add in your prayers these two little girls and their parents. I know the only way they are able to do what they do at all is because of the power of prayer. still a survivor-Kristi

And the beat goes on....

Most of you know that all my scans and bloodwork came back perfect from MDAnderson. Stan and I went for four days the week after Thanksgiving. Bottom line is this: no cancer is evident anywhere in my body at this time and I have been taken off all cancer fighting medication. It has been almost a month now and I can tell that my swelling is going away and my overall color is getting better. I am so tired of writing about cancer. So, I'm just gonna say that I am cancer free and like my oncologist told me "now we just hope and pray!" So, please keep my health in your prayers! It may never come back! That is my hope and prayer... I want to write now about mine and Stan's time in Houston. This time of year downtown Houston where the medical center is, is a pretty place. Lots of Christmas decor and there is just a special feeling in the air and everyone seems to be extra happy. The hustle and bustle of the holiday season is very evident. There is still a muggy feeling in the air down there, but there is also a crispness. When Stan and I go there we hate being away from our kids, but we try and enjoy our time together as much as we can. There is a lot of waiting around and down time between appointments. I usually roam around the hospital and Stan hangs out in the room watching Fox News. Where we stay is a beautiful fancy hotel, so I am distracted and entertained by the nice bellhop and have gotten to know a lot of the staff on a first name basis. They are so very kind. I enjoy listening to the live piano player in the lobby and have even gotten some laughs at some "older" people singing karaoke ! I'm telling you , cancer patients live life to the fullest! This trip, however, Stan and I did some Christmas shopping. There is a big Toys r Us close to the medical center and I always go there and buy Cole a "prize." Makes me sad to go there because it makes me miss him something awful! I also have recently discovered Rice village. We love walking around there and shopping too. This trip, we were so anxious waiting for my appointment to get test results! We are always anxious, but with all the Christmastime stuff around me it seemed to be worse. I told Stan I had to get out and walk around. Outside! So, we went to Herman Park across the street from the hotel and walked around. It's such a beautiful park. Trees so tall they cover your view of the sky! For a brief few minutes I forgot why we were there. Just walking and watching the squirrels running around. Amazed at how oblivious they are to where they are. They are just looking for a nut. We also discovered a new restraunt this time. It was the coolest restraunt I've ever been too. And I've been to ALOT!!! Ha It was an old restored two story house right down the street from the hospital. It looks like an old house just sitting in the middle of all these tall skyscrapers. We walked through the doors and it was like walking back in time. The owners are Italian and were just beautiful people. I think they lived upstairs. It was so warm and cozy in there. Fancy, but yet homey. All the pasta was homemade and everything was just perfect. We were even seranaded by the Italian grandpa of the house playing the guitar and signing to us in his little three piece suit. For a moment, I was able to forget that three blocks down was where my life was about to change in a building that has 40,000 employees. It was just me and my Stan...... The whole world we left outside... We even went back there the next night to celebrate my good news:) I want to ask that you all pray for my sweet Stan. He has been my oxygen through all this. I know it's gotta be so hard to watch your wife go through all this mess... I can't even imagine. He has never once complained about any of it. It's cost us so much financially but he has always provided and I've never had to do without any treatment or doctor that I wanted. I am just really grateful for my Stan. We had an unbelievable Christmas and now, as I start 2013 without any meds I honestly can say I'm a little anxious about it. This is the first time in almost four years I've been medicine free. So, I'm trusting..... I'm gonna just live and try really hard to not think about tomorrow... I'm just living in the day.... I am so grateful for you all. I love my family so much and I have the most amazing friends. So, here's to a cancer free year!!! Thank you God for my health, my husband, my kids, my parents , my sister, my Sammy, and my nephew and nieces and all of my extended family. And bless my doctors and nurses. I love all of you who read this Still a survivor- Kristi

150 Coffee filters and an unanswered question

Hello family, friends and prayer warriors.........Tomorrow Stan and I leave for MDAnderson for my checkup. This checkup is a big deal........well, they all are a big deal, but, there is ALOT that could change after this one, for the better.....Every three months when I go to Houston they do a CTSCAN of my liver, chest and adominal area. So far, as you know, those have all been clear for a year now and I am still cancer free!! Praise God. This time I will have the CTSCAN plus I will have a PETSCAN. A PETSCAN is a test I have had three times in the past 3 and half years. But, I haven't had one since July 2011. This test involves me being injected with radioactive stuff and getting into the tunnell. If there is any cancer in my body it will glow on these tests........We are doing this PETSCAN because I have now completed all my treatments I was supposed to do after my liver surgery in Oct 2011. This is just to make sure I am still cancer free from head to toe. If I am, I will go off all medicine and get to give my body a break. whew!!!! If I am not, then that's a whole different story. But, we are not anticipating a problem because my bloodwork and tumor markers have been perfect now for a whole year. They check my tumor markers every three weeks here in Abilene. Tumor markers aren't used on everyone, but the first thing that alerted us last time the monster came back was my tumor markers went up. So, I am lucky that my body responds with tumor markers when the cancer is present. So, pray for me and Stan to have safe travel and of course for good results. Pray for my kids while I am away from them. Now, about those coffee filters.........hmm........Every morning I wake up I make the coffee. My coffee and coffee filters are in a cabinet above my oven. I have to tip toe to reach them because I am short:) Anyway, a few months ago as I was reaching for them I noticed on the package it said "count 150." Which meant, the full package had orignally contained 150 filters. I had just bought them about a week before. I remember thinking to myself, as a lot of us cancer patients do, "I wonder if I will be here to use all these?" So, every morning I would think about that as I made coffee. Crazy, yeah, I know, but its how my chemo brain works;) So, a couple of days ago I used the last coffee filter!!!! I made it 150 days! It made me realize how much I think about the future. I worried so much about not being here for Cole's first day of kindergarten and yet, here we are almost to Christmas break!! God has been so good to me. I am really trying to live in each day, but, as a mom sometimes it is hard. So, I bought me another package of coffee filters, but this time I bought 700!! HAHAHAH;) Also, since I wrote last, I have been blessed with being able to speak publicly twice with my testimony. This is so healing for me and I really feel The Holy Spirit when I do this. I have had to accept alot of unacceptable things through this cancer. But, there is one thing I will never understand..........And that is why do little kids have to get cancer? My community lost another ten year old child to this monster yesterday. I follow two other little girls that are fighitng this...One is winning and one is not. My heart breaks for these families. I can not even imagine. SO, when you pray form me please pray for these children. Pray for healing for them. Pray for no pain or sickness with their treatments. I will update next week with my results. I love everyone who reads this. Be blessed!