Chapter 6 - Time to Take Action
Thursday, January 17, 2019
Scott and I both return to work today. Scott is going to talk to human resources about all the options should the time come that he needs to stop working. He's such a planner and I'm grateful for it. I know we'll be okay financially. We have good life insurance and his company is willing to work with him to still give him a good severance package as well as long term disability. He also visits with a co-worker who lost her husband to this terrible disease, the same kind Scott has, a little less than two years ago. He wants to get as much information as he can and come up with an action plan to be prepared to fight this thing. She shares her story, offers advice and resources and gives him her contact information should I ever want to talk to her. Uhhh, definitely I want to talk to her. I put that on my to do list for next week.
I go to work and don't say a word about what's going on to anyone. I focus on work-related tasks to take my mind off of things, and I do pretty well holding it together, until the very end of my shift when I start an email to a favorite school teacher of my two oldest kids. I decide I'd better wait until I get home to finish it, so I can focus on my work. The next time I go in, I'm going to have to talk to my boss about everything. I know it will be fine and she'll be supportive, just not something I want ot do. I'm tired of bursting into tears every time I tell someone. I know that's normal, but I'm starting to feel bipolar. On my way home, I stop by a friend's house. I have something for her that I offered to deliver to her earlier, but secretly I'm just looking for an excuse to visit. She asks if I want to come in; she'll take a break from her work-at-home job. I'm glad she invites me in. I didn't want it to be a quick hi/bye visit and then go home to an empty house for an hour before I pick up my kids. While I give her a full update, I have breakdown #1,344, but who's counting! 🤣 She listens and offers me comfort, and many hugs. I'm grateful for the support I feel from her and so many others.
Later that afternoon, Scott and I go to meet with the GI doc again to review the final results of the colonoscopy. While we are waiting, I get a text from my friend who lost her husband to cancer 14 months earlier. I can tell it's taken all day for her to think of what to say. I read it and get a little teary-eyed, and show it to Scott. She says so many things that we need to hear, one thing in particular that sticks out to me. Find doctors that treat patients with cancer, not ones that just treat cancer. She also wants to talk face to face soon. I'm glad I heard from her. The doctor comes in to meet with us. He is sympathetic and understands the ups and downs of cancer. He tells us that it's normal to feel anger, check, denial, check and frustration, check. Okay, I feel less bipolar and more normal. He asks us how our visit with the oncologist went. Scott will get his port in tomorrow and hopefully he can get the liver biopsy done as well. We hope to start chemo next Wednesday if we can get those two things done tomorrow. He asked if we had any additional questions and I asked to see the lung CT scan. According to the report, it said there were "innumerable" lung lesions. I wanted evidence. If there are that many, how can he even still breathe? He brought me over to the computer and tried to pull it up, but the server was down, so it didn't work. He said we could text him next week and he could meet with us so we could see. I will take him up on that offer. I don't think Scott is interested. We don't have any more questions, so he offers to meet with us anytime we need to. We can call or text him anytime, "cause that's just the type of person I am." That's really nice of him. He's a caring doctor, who treats patients with cancer, not just cancer.
That night, I forego the young women's activity to go to the Cub Scout Pinewood Derby with my family. Our 10-year-old son has built a car with Scott and he is excited to race it down the track. This is the best pack meeting of the year! Only a handful of people know about our situation and it's still a little surreal to be there. I can tell Scott is uncomfortable, but he's there as a Scout leader and to support our son, because he doesn't shirk on his duties like that. He's very dependable. Before it starts, I visit with a friend, who asks for an update. "I'm starting a blog, so I don't have to tell the same story a thousand times." "Great idea," she agrees. During the pinewood derby, I wander and visit with some friends, who all express sympathy and offer to help. I ask our son's scout leader to go over and give Scott a hug. He is a huggy guy so he doesn't have a problem with this. He goes up behind Scott's chair and gives him a big bear hug. I can tell Scott is grateful and he gets a little teary-eyed. We go home feeling loved and prepare for another long day tomorrow.
Wednesday, January 30, 2019
The Calm after the Storm
Chapter 5 - An Underlying Feeling of Peace
Wednesday, January 16, 2019
I wake up feeling at peace. Throughout this whole process, that is the main feeling that I have had. That's hard to explain why I feel this way. I have to come to grips with the fact that I may not have my husband around much longer; I could be a single mom and have to be the primary breadwinner. I need to hang on to that feeling with all my might to get me through this. I know God is in charge and He will help us through anything that we face.
Scott and I decide to go to the temple that day. We need to feel the calm and peace that beautiful place provides. We decide to do sealings, a marriage ceremony where couples are sealed together for time and all eternity. We perform these ordinances in behalf of those who have gone before and have not had the opportunity in this life. Through genealogical records, we can find out who our ancestors are and can perform these ordinances for them. It is always a special experience.
More tears are shed during the sealing ceremonies. It reminds us of our own wedding day. We were married and sealed in this same temple. Who would've thought that we'd end up living just down the street from it? After we are done, we spend some time sitting in another area of the temple and contemplating life. Scott mentions, "What if I'm not here for our daughter's wedding?" More tears.
"You'll be here," I reply. "Don't you remember when our nephew, who lost his mom when he was 7, got married and how his mom was there? Her presence was undeniable that day. You'll be there." I don't know if I mean he'll be there in body or spirit. I just want to enjoy the time we can spend together today. We enjoy this special time at the temple and make a goal to go every week as long as he is able. As I was getting ready to leave the temple, I ran into a neighborhood friend who I haven't seen in years. We hugged and I soaked up her beautiful spirit. Coincidence? I think not. It was as if God placed an angel in my path to buoy me up in a time of need.
When we get home, he starts making phone calls to all of his family members with the latest updates. It's depressing for me to listen to, but I know he needs this time with his brothers and parents. I leave to go to the high school that my two oldest kids attend. I signed up a few weeks ago to be on a parent panel for our daughter's child development class. I did this years ago when a friend of mine taught the class, and it was so delightful. The kids ask you parenting questions and you answer them to the best of your ability.
I sit down and see three of my young women, including my daughter. My heart is happy. I know I can get through this with them there, even though they're oblivious to what's going on, except my daughter. She is amazingly strong and I admire her so much. I'm so glad she's not embarrassed to have me come to her class. The parent panel consists of myself and two other moms. As we introduce ourselves, I find out the two other moms have been married before and are on their second marriages and have blended families. That could be me someday. I don't even want to think about that right now and push that thought to the back of my mind. I feel like I'm having an out of body experience as I introduce myself. I feel out of place and that I should be home with my husband. We start the panel and it is pleasant. I enjoy all the questions posed by the kids and I enjoy the other mom's responses and value the wisdom that they have. I hold it together well. No one suspects a dang thing.
After the panel, I go with my daughter to the counseling office. I talked to all the kids about this the night before. We want the school to be aware of what's going on so my kids have a safe place to go during school if they need a break, or just a good cry. As we're walking to the counseling office, two of her friends see her and give her the biggest hug. She has already told some friends. It is awesome to me to see their support and love for her. I get a hug too, from one of her friends who is also one of my "adopted" daughters from the young women program at church, and my heart is happy. We make it to the counseling office and request to talk to a counselor. There are none available right then so I ask to talk to the secretary. She pulls us into an office and the water works start again as I explain the situation. She expresses her sympathy and offers some additional resources that my kids can use if needed. I appreciate her help. We leave the counseling office and I give my daughter a hug goodbye and head to my younger boys' school to talk to the counselor there and to pick them up. The counselor there is understanding also and offers to email all their teachers and let them know of the situation so I don't have to worry about it. That's nice of her. Her children's father recently passed away and her kids are going through the grieving process, so she can be a good resource for my boys. I feel reassured and am glad I listened to the mama voice in the back of my head telling me to do that. I pick up my boys and we head home. It's been a long time since I've picked them up; our neighbor has been helping out with that. It feels good to get back to normal...sort of.
That night I go to Bunco with some neighborhood friends. I wasn't planning on it, but the friend who is hosting sent me a text asking if I'd like to sub for a group member who is out of town. Now that my kids know, I figure word will get out soon enough, and I'd rather tell my Bunco friends personally than have them hear it through the grapevine. I've always enjoyed the camaraderie and sisterhood I feel when I get together with these ladies, so I decide to go. Besides, dinner will be served, and I know this friend will provide a fantastic meal. :) She knows about the situation, she's the indoor soccer friend from yesterday, and I ask her if I can make the announcement once everyone gets there and before we start helping ourselves to the food. She's fine with that. I tell her I'll need tissues. "I have plenty," she replies.
I go to Bunco and act normal. Some people know what's going on, but not the full extent, and some have no idea. I'm hoping to see my friend who lost her husband to cancer a little over a year ago so I can talk to her after, but she's not there. Her daughters are though, and I know they'll be a good resource and listening ear. I'm not looking for sympathy; I just want to get it out to trusted friends. When everyone is gathered together just before the meal, the Bunco host welcomes everyone and turns the time over to me. I just let it all out and the gushing begins. I think this is breakdown #4 today; but I'm just not keeping track anymore. Everyone lets me get it out and then there are hugs all around; I feel so much comfort from these ladies. There are also a bunch of questions. That's when I decide to start a blog; I'm tired of answering the same questions over and over again. The daughters who lost their dad to cancer offer some good advice. "Get a punching bag," they say. "Go to the thrift store and get some cheap dishes and put them in a plastic bag and smash them on your kitchen floor." Great ideas. My oldest son has a punching bag that he bought with his very first paycheck two years ago. He wants to get rid of it to make room for more of his junk in his room. The punching bag will be brought upstairs tomorrow. It's mine now! :) They say they will let their mom know and she will contact me. I look forward to that. We enjoy a wonderful meal and have a great time playing Bunco, but I need to bow out early. Scott asked a ward member to come over and give our kids priesthood blessings tonight. I can't miss those.
The blessings are beautiful. He starts from the youngest and goes up until the oldest. He cries more than we do. What a compassionate and caring man! How we love him and his family so much. Again the underlying feeling of peace and calm enters my heart. Everything will be OK, whatever that means.
Wednesday, January 16, 2019
I wake up feeling at peace. Throughout this whole process, that is the main feeling that I have had. That's hard to explain why I feel this way. I have to come to grips with the fact that I may not have my husband around much longer; I could be a single mom and have to be the primary breadwinner. I need to hang on to that feeling with all my might to get me through this. I know God is in charge and He will help us through anything that we face.
Scott and I decide to go to the temple that day. We need to feel the calm and peace that beautiful place provides. We decide to do sealings, a marriage ceremony where couples are sealed together for time and all eternity. We perform these ordinances in behalf of those who have gone before and have not had the opportunity in this life. Through genealogical records, we can find out who our ancestors are and can perform these ordinances for them. It is always a special experience.
More tears are shed during the sealing ceremonies. It reminds us of our own wedding day. We were married and sealed in this same temple. Who would've thought that we'd end up living just down the street from it? After we are done, we spend some time sitting in another area of the temple and contemplating life. Scott mentions, "What if I'm not here for our daughter's wedding?" More tears.
"You'll be here," I reply. "Don't you remember when our nephew, who lost his mom when he was 7, got married and how his mom was there? Her presence was undeniable that day. You'll be there." I don't know if I mean he'll be there in body or spirit. I just want to enjoy the time we can spend together today. We enjoy this special time at the temple and make a goal to go every week as long as he is able. As I was getting ready to leave the temple, I ran into a neighborhood friend who I haven't seen in years. We hugged and I soaked up her beautiful spirit. Coincidence? I think not. It was as if God placed an angel in my path to buoy me up in a time of need.
When we get home, he starts making phone calls to all of his family members with the latest updates. It's depressing for me to listen to, but I know he needs this time with his brothers and parents. I leave to go to the high school that my two oldest kids attend. I signed up a few weeks ago to be on a parent panel for our daughter's child development class. I did this years ago when a friend of mine taught the class, and it was so delightful. The kids ask you parenting questions and you answer them to the best of your ability.
I sit down and see three of my young women, including my daughter. My heart is happy. I know I can get through this with them there, even though they're oblivious to what's going on, except my daughter. She is amazingly strong and I admire her so much. I'm so glad she's not embarrassed to have me come to her class. The parent panel consists of myself and two other moms. As we introduce ourselves, I find out the two other moms have been married before and are on their second marriages and have blended families. That could be me someday. I don't even want to think about that right now and push that thought to the back of my mind. I feel like I'm having an out of body experience as I introduce myself. I feel out of place and that I should be home with my husband. We start the panel and it is pleasant. I enjoy all the questions posed by the kids and I enjoy the other mom's responses and value the wisdom that they have. I hold it together well. No one suspects a dang thing.
After the panel, I go with my daughter to the counseling office. I talked to all the kids about this the night before. We want the school to be aware of what's going on so my kids have a safe place to go during school if they need a break, or just a good cry. As we're walking to the counseling office, two of her friends see her and give her the biggest hug. She has already told some friends. It is awesome to me to see their support and love for her. I get a hug too, from one of her friends who is also one of my "adopted" daughters from the young women program at church, and my heart is happy. We make it to the counseling office and request to talk to a counselor. There are none available right then so I ask to talk to the secretary. She pulls us into an office and the water works start again as I explain the situation. She expresses her sympathy and offers some additional resources that my kids can use if needed. I appreciate her help. We leave the counseling office and I give my daughter a hug goodbye and head to my younger boys' school to talk to the counselor there and to pick them up. The counselor there is understanding also and offers to email all their teachers and let them know of the situation so I don't have to worry about it. That's nice of her. Her children's father recently passed away and her kids are going through the grieving process, so she can be a good resource for my boys. I feel reassured and am glad I listened to the mama voice in the back of my head telling me to do that. I pick up my boys and we head home. It's been a long time since I've picked them up; our neighbor has been helping out with that. It feels good to get back to normal...sort of.
That night I go to Bunco with some neighborhood friends. I wasn't planning on it, but the friend who is hosting sent me a text asking if I'd like to sub for a group member who is out of town. Now that my kids know, I figure word will get out soon enough, and I'd rather tell my Bunco friends personally than have them hear it through the grapevine. I've always enjoyed the camaraderie and sisterhood I feel when I get together with these ladies, so I decide to go. Besides, dinner will be served, and I know this friend will provide a fantastic meal. :) She knows about the situation, she's the indoor soccer friend from yesterday, and I ask her if I can make the announcement once everyone gets there and before we start helping ourselves to the food. She's fine with that. I tell her I'll need tissues. "I have plenty," she replies.
I go to Bunco and act normal. Some people know what's going on, but not the full extent, and some have no idea. I'm hoping to see my friend who lost her husband to cancer a little over a year ago so I can talk to her after, but she's not there. Her daughters are though, and I know they'll be a good resource and listening ear. I'm not looking for sympathy; I just want to get it out to trusted friends. When everyone is gathered together just before the meal, the Bunco host welcomes everyone and turns the time over to me. I just let it all out and the gushing begins. I think this is breakdown #4 today; but I'm just not keeping track anymore. Everyone lets me get it out and then there are hugs all around; I feel so much comfort from these ladies. There are also a bunch of questions. That's when I decide to start a blog; I'm tired of answering the same questions over and over again. The daughters who lost their dad to cancer offer some good advice. "Get a punching bag," they say. "Go to the thrift store and get some cheap dishes and put them in a plastic bag and smash them on your kitchen floor." Great ideas. My oldest son has a punching bag that he bought with his very first paycheck two years ago. He wants to get rid of it to make room for more of his junk in his room. The punching bag will be brought upstairs tomorrow. It's mine now! :) They say they will let their mom know and she will contact me. I look forward to that. We enjoy a wonderful meal and have a great time playing Bunco, but I need to bow out early. Scott asked a ward member to come over and give our kids priesthood blessings tonight. I can't miss those.
The blessings are beautiful. He starts from the youngest and goes up until the oldest. He cries more than we do. What a compassionate and caring man! How we love him and his family so much. Again the underlying feeling of peace and calm enters my heart. Everything will be OK, whatever that means.
Tuesday, January 29, 2019
Oncologist Day: Official Diagnosis
Chapter 4 - Is it possible to feel every emotion in one day?
Tuesday, January 15, 2019
What do you do when you find out your husband has cancer and need to get out some frustration? Go exercise! I text a friend that morning to see if she wants to go to a zumba class with me. She texts back saying she can't do that, but she can do indoor soccer; it's at a more convenient time for her. That will be even better! I think. I can really get my aggression out that way! We decide to go to the class together and she'll pick me up.
As soon as my kids leave for school and Scott leaves for work, I text my friend whose house we stopped by at last night. I give her a brief summary of our weekend and ask her if we can meet with her sometime. I wait to hear from her. I hope she's available soon. I don't really know who else to turn to and I need someone.
I am alone in my house for the first time since everything has happened. My mind finally has time to process everything. I can feel myself losing it! I text my sis-in-law to call me immediately! She tried to call us the night before, but the timing didn't work out. I know she wants to talk and I desperately want to talk to her. She calls within a few minutes. I have already cried quite a bit by this time. I answer and can't even speak. She allows me time to just let it out. I spill my guts to her and she just lets me talk. I appreciate her listening ear. We have the best conversation and I'm so glad we talked. She is also one who can always cheer me up. She has that gift and I'm so grateful for it.
I go to indoor soccer with my friend. She gives me a big hug when she picks me up. She is one of the ward friends I have been keeping updated. I appreciate her prayers for our family too. We have a wonderful time playing indoor soccer, which I've never played before. I get out some of my aggression playing and the other half of the time hiding in a corner as goalie. I know too much human interaction will be a bit much for me right now.
Indoor soccer was fun and I'm glad I went. I don't want to be home alone but I also want to be away from people for a while. I get home and see that my stage 4 cancer friend has texted back. Her message is long, but so powerful! Everything I needed to hear. Oh how I love her and her fighting spirit! Her comforting words soothe my wounded soul. She wants to talk in person, but is enjoying Hawaii with her family and won't be back until the end of the week. She mentions Hawaii is healing for her. Boy, I imagine. Scott and I have a Hawaii trip planned for this summer for our 20 year anniversary. Nothing is stopping us from doing that; we are both looking forward to that immensely. We agree to meet sometime next week to talk, after she gets back.
Scott comes home at noon and we enjoy lunch together. He called the cancer doc and they squeezed him in for a 1:30 appointment that day. It's not something we're looking forward to. When we get there, we do the check-in process, yet again, and have a seat. I don't want them to call his name. I don't want this to be real. I just want to wake up from this nightmare.
They call him back and a nice nurse shows us to the room. We haven't met one without a good bedside manner. I'm telling ya, I really think being nice is a job requirement. You'd have to be when you're dealing with anxious patients. The doctor comes in after a few minutes and says that since they squeezed us in, he might get interrupted a few times and hopefully can take the time we need to answer all of our questions without feeling rushed. Not very reassuring already! He jumps into the explanation of colon cancer; we already know he has that, but how far advanced is it? Stage one is the polyps; those were found on the colonoscopy. Stage 2 and 3 I can't remember; he shows us a bazillion diagrams and all of his words mush together and I can't remember anything. Stage 4 is when it's started to spread and the doctor confirms that it has spread to the liver and the lungs. They want to start chemo ASAP to try to shrink what's in his lungs. The lung lesions is why he has this cough. They don't want to do surgery or radiation, yet. They can't do surgery on the lungs as that is the most concerning to them at this point. They want him to come in every two weeks and have the chemo injections into a port in his chest so they don't have to stick him every time. That will be nice, since he hates needles. They'll do the chemo injections for at least 3-4 months and then do another CT scan of the lungs and see if anything has shrunk. Then they'll reassess and see if surgery or radiation is the next step for the colon and liver. The doctor is talking so fast and I can't process anything. There is no "cure" for stage 4 cancer; all they can do is improve his quality of life at this point!
How can he sit here so straight faced and tell us that Scott will die from this? Does he have a soul? Can he just stop talking so we can come up for air and try to process some of this? He asks if we have any questions. Scott has prepared some that he's thought of over the past few days. He takes the time to answer them. What about our cruise that we have planned in a few weeks for my mom's 70th birthday? If he starts the chemo before then, his immune system will be down and it's not a good idea, the doctor says. Well, we're still going to Hawaii in June. Nothing will stop us from that. I don't care what he says. Then Scott asks the question that we're all wondering but don't want to ask. "If there's no cure and you're improving my quality of life, what is the average time for other patients in my circumstance?" Why the hell did you just ask him that? Would you stop being so damn pessimistic? Actually, I'd probably ask the same thing if it were my life! I'd want to know how much time I had left with my family. The doctor responds that the average life span of someone with stage 4 colon cancer is 33 months! That's when the tears come! Three years?! My husband is only 45! If he's gone in 33 months or less, our baby will be 10 years old. That's too young to lose a father. Scott is too young to die. I can't be a single mom with kids still at home! Scott is so patient with the kids and helps me so much when our house is chaotic! I can't do this on my own! That's when I finally speak up! "Stop talking please!" I request. "How can a relatively healthy "young" man have stage 4 cancer and show no symptoms? I just don't get it!" The doctor explains that stage 1 can only show up in a screening, as well as stages 2 and 3. So basically we're screwed, I think. Because the insurance company wouldn't allow him to get a scope before the age of 45, this happened! Screw them! I'm so mad, I can't even talk. I listen to the doctor explain but all I hear is blah blah blah!
The nurse comes in and continues explaining about chemo; how it's going to go, the side effects, etc. I don't even know how I'm feeling right now. I can tell she's getting toward the end and I interrupt her and say, "I need you to be human right now. Forget the medical jargon and just show us some compassion. We both need some reassurance right now. How can you help us?" She says there's a social worker on site that she will call as soon as she's done explaining everything. She says she will ask the doc if he can hold off on chemo until after the cruise. My tears subside a bit and I feel a tiny bit better.
We've been in that room for over an hour. We just want to get home and back to our kids. The nurse steps out to call the social worker, allowing us time to collect our thoughts. I don't even remember what we said to each other. We are both in shock. She returns saying that the social worker has an opening right now if we want to go down there. "Thank you so much," we say. We have no idea how to tell our kids and we need some guidance.
We walk down to the social worker's office with sad faces but the tears have dried. It definitely won't be the last of them today. We fill out all this stupid paperwork that doesn't relate to our situation, but is government mandated. I really hate the government. They call us back quickly and the social worker is kind and patient. He asks us what's going on and we both lose it. Amidst our tears, we tell him the situation and ask how to tell our kids. This a life changer; something they shouldn't have to experience at their age. We are both comforted in the social worker's office as he expresses sympathy and compassion. He tells us that this is like the elephant in the room; we just need to talk about it and not ignore it. Express that we will get through this together and we will help them in any way that they need. We leave feeling uplifted, not a feeling we've had leaving any other doctor's office this week.
We drive home and are both very agitated. We need to tell the kids, but our oldest son is working and won't be home until 8:00. That's going to be a torturous few hours. I text our bishop, the leader of our ward, who also happens to be our next door neighbor and dear friend. He has been texting me back and forth all day to check in and see how things are going. What is your schedule like this evening? We need to meet with you ASAP, the text says. We don't want to tell the kids until we get some guidance from him and a blessing. We really need them right now. He's free all evening and asks if we want him to come over. We're on our way home and we'll get back to him. We get home, after three hours of being gone, and are relieved to see the kids. We visit with them briefly and then go to the bishop's house. He answers the door and asks if we want to meet with him there. We notice that his family is home and Scott asks if we can meet at his office. He says he'll get his keys and meet us there. As we pull out of the driveway in our van, we can see our 15-year-old daughter watching from the window. Owww, if that doesn't pull at our heart strings! "She knows," Scott says and we both cry. We beat the bishop to the church and have another crying session. I've never seen my husband cry this much. I'm glad he's able to let it out. It's a bonding experience for us.
The bishop arrives at the church and lets us into his office. We sit down and he asks us what's up and then the water works start again for Scott. He can't even speak. I tell him about our doctor's visit today and all the feelings we've experienced. We both need blessings to comfort our souls before we tell the kids. He expresses sympathy and is so kind. He is a good man. We are so blessed to have him as our leader. He asks who wants to go first and Scott and I both point to him. The bishop gives him an incredible blessing and many tears are shed. Then it's my turn. Another beautiful blessing. He gives so many words of encouragement. I know they come directly from heaven. We visit for a bit after the blessings. He knows this will be a hard trial for our family. He is concerned about the time it will take away from our normal lives and wants to help us in any way he can.
He looks at me and says, "You're going to have a lot on your plate now. Do you want to be relieved ..."
"No!" I exclaim, before he even finishes ... "of your church duties?" (referring to my leadership calling in the ward of presiding over the Young women)
"That was a quick no," he says.
"I've thought a lot about it," I reply. "Those girls are what keep me going." You might as well ask me to give up my children, I think, cause that's what they are to me.
He advises me to rely on the rest of my presidency members to help me out when I need it. "It's already done, Bishop. They know the situation (they were the church friends who came by last night) and are willing to step up and help at any time. I am so blessed to work with such amazing women." I thank him for his concern and he tells me to let him know when I feel like it's getting to be too much and I might need a break. I agree. For now, I'll stay put.
We feel like we can tell the kids now, but still need to wait until our oldest son gets home from work. The hours tick slowly and we try to establish a sense of normalcy, whatever that means now. We'll have a new normal now, but we refuse to let that bring us down.
8:00 finally rolls around and we hear the car pull into the driveway. It's go time, I'm sure we both think as we gather the children together on the couch. I go get the tissue. Scott begins by telling all the kids he loves them. "Oh great, it's not good if that's how he's starting out talking to us," says our oldest son, age 18. He then proceeds to tell them more details about the last few days. Up until now, they have only known that Dad had a colonoscopy and more tests done on his liver and lungs. When he said, "I have cancer," I look at all of my children. The tears have started to fall on our daughter's cheeks. Slowly, everyone begins to cry as Dad explains things, except for our ten-year-old son. He sits still and stone faced. That concerns me. He has always been very emotional, and wiggly. Sitting still is almost impossible for him. I know everyone expresses emotions in a different way and I'm not expecting all of our children to cry, but this is very out of character for him. I wonder what is going through his mind right now. Our 7-year-old is crying. He doesn't understand what cancer means. He only knows that his sister is crying and he loves her so much so he cries along with her. It touches my heart. Scott does most of the talking. He testifies of the plan of salvation and the Atonement of Jesus Christ and that because of Him we can return to live with Him again and together as a family. We have made sacred covenants in the temple that seal us together after this life, and that no matter what happens, we will be together again. We will get through this as a family and there is a reason for this experience, even if we don't know why right now. It is a sacred, special experience that we have with our children. We allow each of them to express their feelings and ask questions. Some talk and some don't. That is okay. We want them to feel safe and that they can talk when they are ready. This will not be the only conversation we have about it. We hug each other and say a family prayer. It's a good end to a very hellish day.
Tuesday, January 15, 2019
What do you do when you find out your husband has cancer and need to get out some frustration? Go exercise! I text a friend that morning to see if she wants to go to a zumba class with me. She texts back saying she can't do that, but she can do indoor soccer; it's at a more convenient time for her. That will be even better! I think. I can really get my aggression out that way! We decide to go to the class together and she'll pick me up.
As soon as my kids leave for school and Scott leaves for work, I text my friend whose house we stopped by at last night. I give her a brief summary of our weekend and ask her if we can meet with her sometime. I wait to hear from her. I hope she's available soon. I don't really know who else to turn to and I need someone.
I am alone in my house for the first time since everything has happened. My mind finally has time to process everything. I can feel myself losing it! I text my sis-in-law to call me immediately! She tried to call us the night before, but the timing didn't work out. I know she wants to talk and I desperately want to talk to her. She calls within a few minutes. I have already cried quite a bit by this time. I answer and can't even speak. She allows me time to just let it out. I spill my guts to her and she just lets me talk. I appreciate her listening ear. We have the best conversation and I'm so glad we talked. She is also one who can always cheer me up. She has that gift and I'm so grateful for it.
I go to indoor soccer with my friend. She gives me a big hug when she picks me up. She is one of the ward friends I have been keeping updated. I appreciate her prayers for our family too. We have a wonderful time playing indoor soccer, which I've never played before. I get out some of my aggression playing and the other half of the time hiding in a corner as goalie. I know too much human interaction will be a bit much for me right now.
Indoor soccer was fun and I'm glad I went. I don't want to be home alone but I also want to be away from people for a while. I get home and see that my stage 4 cancer friend has texted back. Her message is long, but so powerful! Everything I needed to hear. Oh how I love her and her fighting spirit! Her comforting words soothe my wounded soul. She wants to talk in person, but is enjoying Hawaii with her family and won't be back until the end of the week. She mentions Hawaii is healing for her. Boy, I imagine. Scott and I have a Hawaii trip planned for this summer for our 20 year anniversary. Nothing is stopping us from doing that; we are both looking forward to that immensely. We agree to meet sometime next week to talk, after she gets back.
Scott comes home at noon and we enjoy lunch together. He called the cancer doc and they squeezed him in for a 1:30 appointment that day. It's not something we're looking forward to. When we get there, we do the check-in process, yet again, and have a seat. I don't want them to call his name. I don't want this to be real. I just want to wake up from this nightmare.
They call him back and a nice nurse shows us to the room. We haven't met one without a good bedside manner. I'm telling ya, I really think being nice is a job requirement. You'd have to be when you're dealing with anxious patients. The doctor comes in after a few minutes and says that since they squeezed us in, he might get interrupted a few times and hopefully can take the time we need to answer all of our questions without feeling rushed. Not very reassuring already! He jumps into the explanation of colon cancer; we already know he has that, but how far advanced is it? Stage one is the polyps; those were found on the colonoscopy. Stage 2 and 3 I can't remember; he shows us a bazillion diagrams and all of his words mush together and I can't remember anything. Stage 4 is when it's started to spread and the doctor confirms that it has spread to the liver and the lungs. They want to start chemo ASAP to try to shrink what's in his lungs. The lung lesions is why he has this cough. They don't want to do surgery or radiation, yet. They can't do surgery on the lungs as that is the most concerning to them at this point. They want him to come in every two weeks and have the chemo injections into a port in his chest so they don't have to stick him every time. That will be nice, since he hates needles. They'll do the chemo injections for at least 3-4 months and then do another CT scan of the lungs and see if anything has shrunk. Then they'll reassess and see if surgery or radiation is the next step for the colon and liver. The doctor is talking so fast and I can't process anything. There is no "cure" for stage 4 cancer; all they can do is improve his quality of life at this point!
How can he sit here so straight faced and tell us that Scott will die from this? Does he have a soul? Can he just stop talking so we can come up for air and try to process some of this? He asks if we have any questions. Scott has prepared some that he's thought of over the past few days. He takes the time to answer them. What about our cruise that we have planned in a few weeks for my mom's 70th birthday? If he starts the chemo before then, his immune system will be down and it's not a good idea, the doctor says. Well, we're still going to Hawaii in June. Nothing will stop us from that. I don't care what he says. Then Scott asks the question that we're all wondering but don't want to ask. "If there's no cure and you're improving my quality of life, what is the average time for other patients in my circumstance?" Why the hell did you just ask him that? Would you stop being so damn pessimistic? Actually, I'd probably ask the same thing if it were my life! I'd want to know how much time I had left with my family. The doctor responds that the average life span of someone with stage 4 colon cancer is 33 months! That's when the tears come! Three years?! My husband is only 45! If he's gone in 33 months or less, our baby will be 10 years old. That's too young to lose a father. Scott is too young to die. I can't be a single mom with kids still at home! Scott is so patient with the kids and helps me so much when our house is chaotic! I can't do this on my own! That's when I finally speak up! "Stop talking please!" I request. "How can a relatively healthy "young" man have stage 4 cancer and show no symptoms? I just don't get it!" The doctor explains that stage 1 can only show up in a screening, as well as stages 2 and 3. So basically we're screwed, I think. Because the insurance company wouldn't allow him to get a scope before the age of 45, this happened! Screw them! I'm so mad, I can't even talk. I listen to the doctor explain but all I hear is blah blah blah!
The nurse comes in and continues explaining about chemo; how it's going to go, the side effects, etc. I don't even know how I'm feeling right now. I can tell she's getting toward the end and I interrupt her and say, "I need you to be human right now. Forget the medical jargon and just show us some compassion. We both need some reassurance right now. How can you help us?" She says there's a social worker on site that she will call as soon as she's done explaining everything. She says she will ask the doc if he can hold off on chemo until after the cruise. My tears subside a bit and I feel a tiny bit better.
We've been in that room for over an hour. We just want to get home and back to our kids. The nurse steps out to call the social worker, allowing us time to collect our thoughts. I don't even remember what we said to each other. We are both in shock. She returns saying that the social worker has an opening right now if we want to go down there. "Thank you so much," we say. We have no idea how to tell our kids and we need some guidance.
We walk down to the social worker's office with sad faces but the tears have dried. It definitely won't be the last of them today. We fill out all this stupid paperwork that doesn't relate to our situation, but is government mandated. I really hate the government. They call us back quickly and the social worker is kind and patient. He asks us what's going on and we both lose it. Amidst our tears, we tell him the situation and ask how to tell our kids. This a life changer; something they shouldn't have to experience at their age. We are both comforted in the social worker's office as he expresses sympathy and compassion. He tells us that this is like the elephant in the room; we just need to talk about it and not ignore it. Express that we will get through this together and we will help them in any way that they need. We leave feeling uplifted, not a feeling we've had leaving any other doctor's office this week.
We drive home and are both very agitated. We need to tell the kids, but our oldest son is working and won't be home until 8:00. That's going to be a torturous few hours. I text our bishop, the leader of our ward, who also happens to be our next door neighbor and dear friend. He has been texting me back and forth all day to check in and see how things are going. What is your schedule like this evening? We need to meet with you ASAP, the text says. We don't want to tell the kids until we get some guidance from him and a blessing. We really need them right now. He's free all evening and asks if we want him to come over. We're on our way home and we'll get back to him. We get home, after three hours of being gone, and are relieved to see the kids. We visit with them briefly and then go to the bishop's house. He answers the door and asks if we want to meet with him there. We notice that his family is home and Scott asks if we can meet at his office. He says he'll get his keys and meet us there. As we pull out of the driveway in our van, we can see our 15-year-old daughter watching from the window. Owww, if that doesn't pull at our heart strings! "She knows," Scott says and we both cry. We beat the bishop to the church and have another crying session. I've never seen my husband cry this much. I'm glad he's able to let it out. It's a bonding experience for us.
The bishop arrives at the church and lets us into his office. We sit down and he asks us what's up and then the water works start again for Scott. He can't even speak. I tell him about our doctor's visit today and all the feelings we've experienced. We both need blessings to comfort our souls before we tell the kids. He expresses sympathy and is so kind. He is a good man. We are so blessed to have him as our leader. He asks who wants to go first and Scott and I both point to him. The bishop gives him an incredible blessing and many tears are shed. Then it's my turn. Another beautiful blessing. He gives so many words of encouragement. I know they come directly from heaven. We visit for a bit after the blessings. He knows this will be a hard trial for our family. He is concerned about the time it will take away from our normal lives and wants to help us in any way he can.
He looks at me and says, "You're going to have a lot on your plate now. Do you want to be relieved ..."
"No!" I exclaim, before he even finishes ... "of your church duties?" (referring to my leadership calling in the ward of presiding over the Young women)
"That was a quick no," he says.
"I've thought a lot about it," I reply. "Those girls are what keep me going." You might as well ask me to give up my children, I think, cause that's what they are to me.
He advises me to rely on the rest of my presidency members to help me out when I need it. "It's already done, Bishop. They know the situation (they were the church friends who came by last night) and are willing to step up and help at any time. I am so blessed to work with such amazing women." I thank him for his concern and he tells me to let him know when I feel like it's getting to be too much and I might need a break. I agree. For now, I'll stay put.
We feel like we can tell the kids now, but still need to wait until our oldest son gets home from work. The hours tick slowly and we try to establish a sense of normalcy, whatever that means now. We'll have a new normal now, but we refuse to let that bring us down.
8:00 finally rolls around and we hear the car pull into the driveway. It's go time, I'm sure we both think as we gather the children together on the couch. I go get the tissue. Scott begins by telling all the kids he loves them. "Oh great, it's not good if that's how he's starting out talking to us," says our oldest son, age 18. He then proceeds to tell them more details about the last few days. Up until now, they have only known that Dad had a colonoscopy and more tests done on his liver and lungs. When he said, "I have cancer," I look at all of my children. The tears have started to fall on our daughter's cheeks. Slowly, everyone begins to cry as Dad explains things, except for our ten-year-old son. He sits still and stone faced. That concerns me. He has always been very emotional, and wiggly. Sitting still is almost impossible for him. I know everyone expresses emotions in a different way and I'm not expecting all of our children to cry, but this is very out of character for him. I wonder what is going through his mind right now. Our 7-year-old is crying. He doesn't understand what cancer means. He only knows that his sister is crying and he loves her so much so he cries along with her. It touches my heart. Scott does most of the talking. He testifies of the plan of salvation and the Atonement of Jesus Christ and that because of Him we can return to live with Him again and together as a family. We have made sacred covenants in the temple that seal us together after this life, and that no matter what happens, we will be together again. We will get through this as a family and there is a reason for this experience, even if we don't know why right now. It is a sacred, special experience that we have with our children. We allow each of them to express their feelings and ask questions. Some talk and some don't. That is okay. We want them to feel safe and that they can talk when they are ready. This will not be the only conversation we have about it. We hug each other and say a family prayer. It's a good end to a very hellish day.
Saturday, January 26, 2019
Colonoscopy Day
Chapter 3 - Another Diagnosis
Monday, January 14, 2019
Scott's appointment is at 9:00 AM but we may need to wait a bit, since the hospital scheduled an "emergency" colonoscopy and there are a lot of other appointments that day. Scott called the doctor last night and confirmed everything with him. That was really nice of the doctor to take a call from us on his cell phone on a Sunday.
I can tell Scott is nervous. He's hungry, he hates needles, and being unconscious, etc. After we check in, he sits down and is more silent than usual. I look around the waiting room and see that he's the youngest man there. There is a young mother there with a newborn baby, but she leaves soon after we get there. It gives me comfort to see this precious new life straight from heaven. It reminds me that I need to go visit with my sis-in-law that just had a baby and hold him for a while. It's good therapy.
An older gentleman is in the waiting room trying to make small talk with Scott. He asks him if it's his first one, which we laughingly reply yes. He mentions that he's had several in order to serve a mission with his wife; they've served five, and shows us a copy of a book he has written about gardening. I can tell Scott is intentionally ignoring him. I humor the man for a few minutes and pretend to be interested in his book. I am relieved when his wife sits down next to him to distract from our conversation. I'm immediately jealous. I hope my husband and I can serve a mission together when we're your age. He might have cancer so he might not be around that long, I think. I wish we were here just for a standard checkup.
On our way to the hospital, we were joking around that hey, at least we don't have to pay for it now, since we met our medical deductible for the year with the ER visit. Scott wanted to get a colonoscopy this year, now that he's 45 and insurance will pay for it with a family history. His father had colon cancer 15 years ago, but he was in his 60's. He beat it. Maybe Scott can do the same thing. If that's even what he has.
While we're waiting, I get a text from a sis-in-law. Her sister works hospital administration for the GI docs and asks which doctor is doing the procedure. We let her know and she texts her sister to find out more info. She texts back saying her sister says he is a really good doc, good with follow up and communication. She also mentions that she can put in a request to rush the results. I tell her the results are already going to be rushed, but if her sister can request one too, that would be even better. I share this information with Scott and it helps calm his nerves. They finally call us back at 11:00. I can tell he's starving and miserable and just wants to get this over with.
They finally call him back, get him in a bed, ask him to get undressed from the waist down, get him hooked up to an IV, etc. The nurse is young, but nice. It's lunch time before they finally are ready for him in the back. We go back there to meet the doc and talk about a few things. The doc gives us a brief summary of the procedure and adds that when he's done, he wants Scott to go to CT and get an additional scan of his chest, so they get all the lungs. The ER scan found lesions on the lungs and he wants to see if there's more higher in the chest. I guess we seem stunned because he asks if they told us that on Friday. "Uh, no, they forgot to mention that." That would have been nice to know, I thought.
I give Scott a kiss goodbye and they wheel him off to get scoped. I go back to the room to wait. I have time to use the bathroom and answer a few texts before he's back. Wow, that was quick! The nurse shows us the pictures and tells us the doc will be in in a few minutes to go over the results.
The doctor comes in a few minutes later and goes over the pictures with us. Two massive polyps and a huge mass, along with some dead spots. He didn't remove the polyps because the mass is cancer, so they might have to remove some of the colon. He confirms the ER finding that the masses, in his colon and his liver, are cancer. He wants to send us to a cancer doc ASAP to confirm his decision. He says he'll call Scott later when the lung CT results are in. then he starts talking about chemo and radiation and surgery, just like the ER doc from the other night. The nurse stands off to the side with her head down, just like the ER nurse. Is this medical protocol? That the nurse stands like that and listens while the doctor delivers bad news? Is she there for moral support, a second witness, or to be there to protect the doctor if the patient, or spouse, wants to slug him? Or all three? I honestly can't believe what I'm hearing. How can my relatively healthy husband have cancer at his age? There were no signs. Why couldn't he get scoped earlier. Stupid insurance companies! Why can't people just request a medical test if they feel they need it? Why do they have to get pre-authorization from government bureaucrats? I'm so mad I want to punch something! Keep it together, I think. You've got to be strong for Scott. Heaven knows what he's thinking! Then the doctor starts talking about our kids and how we need to get them tested. It's just so much information coming at us so quickly. He is a good doctor though. He makes sure we don't have any more questions before he leaves. He confirms that he'll follow up with us when he gets the lung CT results.
Scott and I look at each other a bit dumbfounded. He mouths the word "chemo" to me in a joking manner. He's trying to keep a positive attitude. I'm grateful for that. I smile back and try to laugh along. I wish I could be so optimistic.
We head down to radiology; which is clear down at the other end of the hospital. Scott is so weak from not eating that he walks slow. That is a change. I'm usually the one practically running to keep up with him. When we get there, I have a weird deja vu feeling. Oh yah, we were just here last Friday! Scott says what I am thinking.
He walks into the room and and I start a text to my family. That's when I lose it! I'm crying as I type the words. Pure, raw emotion about everything that is happening right then. I chose to text my family - my siblings and parents - because they are my safe place. I know they will listen and support me no matter what. It feels good to get it out. I wipe my face and put on a happy face before Scott gets out of the room. We're glad to get out of there. We go get some lunch at Panda Express and talk about what we're going to tell our kids. We decide that we won't tell them anything until we talk to the cancer doc. Hopefully that will be soon. The waiting is torture. Two docs say he has cancer. Will the cancer doc's opinion be any different? It's all just so surreal. This day has been so long already, and it's only halfway over.
We go home and talk to the kids; but just tell them that Daddy had his test today and we'll find out more info tomorrow. We go about life as usual. I send a group text to some church friends with an update, one of which is somewhat aware of the situation. She was in our church lesson on Sunday and has been texting me off and on all day to see how things are going. Then I call my sister to talk to her. She can always help me calm down. I'm on the phone for literally less than five minutes when these church friends that I just texted show up at my doorstep with a gift and some hugs. Wow! That was awesome! Talk about feeling the love! That meant so much to me that they came over in a time of need. And the timing was perfect! I found out later that they had actually been planning throughout the day when they would come over, but coming over right after the text makes for a better story. They talk to us briefly and we say Scott "might" have cancer, even though we're 90% sure he does. When they leave, I get dinner for the kids. He gets a phone call as I'm saying goodbye to the friends and he seems agitated and says he wants to go for a walk. I ask him to wait; I'd like to go with him. After I get the kids situated with dinner, we leave for a walk and we're not even out of the driveway when he says, "That was the GI doc on the phone. He got the CT results back. I DO have colon cancer and it has spread to the liver and the lungs. He wants to send us to a cancer doc to start treatment ASAP, probably tomorrow or Wednesday. He wants to meet with us again on Thursday when he has the final results from the colonoscopy, but based on his experience, he knows I have cancer." My head is spinning; I'm sure his is too. We walk hand in hand in silence for a while. We walk around the neighborhood and decide to stop by the house of a couple we know dealing with this same situation. She has stage 4 breast cancer and is young herself, only 5 years older than Scott. We knock, but there's no answer. I'll text her tomorrow, I think. Then we turn around and head home. We stop by our neighbors house across the street to let them know of the situation. They helped us with carpool today because I couldn't pick up the kids due to our extended stay at the hospital. We need to let them know that our schedule will be a bit crazy for the next little while and need to ask for their continued help. They are very understanding and say they will include us in their prayers. We are grateful.
Going home is hard. How can we continue to "play dumb" with the kids? We need to talk to that cancer doc first. There are still so many unanswered questions and we want to be able to have those answers for them. We hope we can get in tomorrow. I spend the evening answering a mountain of texts and updating family and ward friends about what we know so far. We finally go to bed after what seems like the longest day ever. We both cry and don't get much sleep that night. Tomorrow is going to be even longer.
Monday, January 14, 2019
Scott's appointment is at 9:00 AM but we may need to wait a bit, since the hospital scheduled an "emergency" colonoscopy and there are a lot of other appointments that day. Scott called the doctor last night and confirmed everything with him. That was really nice of the doctor to take a call from us on his cell phone on a Sunday.
I can tell Scott is nervous. He's hungry, he hates needles, and being unconscious, etc. After we check in, he sits down and is more silent than usual. I look around the waiting room and see that he's the youngest man there. There is a young mother there with a newborn baby, but she leaves soon after we get there. It gives me comfort to see this precious new life straight from heaven. It reminds me that I need to go visit with my sis-in-law that just had a baby and hold him for a while. It's good therapy.
An older gentleman is in the waiting room trying to make small talk with Scott. He asks him if it's his first one, which we laughingly reply yes. He mentions that he's had several in order to serve a mission with his wife; they've served five, and shows us a copy of a book he has written about gardening. I can tell Scott is intentionally ignoring him. I humor the man for a few minutes and pretend to be interested in his book. I am relieved when his wife sits down next to him to distract from our conversation. I'm immediately jealous. I hope my husband and I can serve a mission together when we're your age. He might have cancer so he might not be around that long, I think. I wish we were here just for a standard checkup.
On our way to the hospital, we were joking around that hey, at least we don't have to pay for it now, since we met our medical deductible for the year with the ER visit. Scott wanted to get a colonoscopy this year, now that he's 45 and insurance will pay for it with a family history. His father had colon cancer 15 years ago, but he was in his 60's. He beat it. Maybe Scott can do the same thing. If that's even what he has.
While we're waiting, I get a text from a sis-in-law. Her sister works hospital administration for the GI docs and asks which doctor is doing the procedure. We let her know and she texts her sister to find out more info. She texts back saying her sister says he is a really good doc, good with follow up and communication. She also mentions that she can put in a request to rush the results. I tell her the results are already going to be rushed, but if her sister can request one too, that would be even better. I share this information with Scott and it helps calm his nerves. They finally call us back at 11:00. I can tell he's starving and miserable and just wants to get this over with.
They finally call him back, get him in a bed, ask him to get undressed from the waist down, get him hooked up to an IV, etc. The nurse is young, but nice. It's lunch time before they finally are ready for him in the back. We go back there to meet the doc and talk about a few things. The doc gives us a brief summary of the procedure and adds that when he's done, he wants Scott to go to CT and get an additional scan of his chest, so they get all the lungs. The ER scan found lesions on the lungs and he wants to see if there's more higher in the chest. I guess we seem stunned because he asks if they told us that on Friday. "Uh, no, they forgot to mention that." That would have been nice to know, I thought.
I give Scott a kiss goodbye and they wheel him off to get scoped. I go back to the room to wait. I have time to use the bathroom and answer a few texts before he's back. Wow, that was quick! The nurse shows us the pictures and tells us the doc will be in in a few minutes to go over the results.
The doctor comes in a few minutes later and goes over the pictures with us. Two massive polyps and a huge mass, along with some dead spots. He didn't remove the polyps because the mass is cancer, so they might have to remove some of the colon. He confirms the ER finding that the masses, in his colon and his liver, are cancer. He wants to send us to a cancer doc ASAP to confirm his decision. He says he'll call Scott later when the lung CT results are in. then he starts talking about chemo and radiation and surgery, just like the ER doc from the other night. The nurse stands off to the side with her head down, just like the ER nurse. Is this medical protocol? That the nurse stands like that and listens while the doctor delivers bad news? Is she there for moral support, a second witness, or to be there to protect the doctor if the patient, or spouse, wants to slug him? Or all three? I honestly can't believe what I'm hearing. How can my relatively healthy husband have cancer at his age? There were no signs. Why couldn't he get scoped earlier. Stupid insurance companies! Why can't people just request a medical test if they feel they need it? Why do they have to get pre-authorization from government bureaucrats? I'm so mad I want to punch something! Keep it together, I think. You've got to be strong for Scott. Heaven knows what he's thinking! Then the doctor starts talking about our kids and how we need to get them tested. It's just so much information coming at us so quickly. He is a good doctor though. He makes sure we don't have any more questions before he leaves. He confirms that he'll follow up with us when he gets the lung CT results.
Scott and I look at each other a bit dumbfounded. He mouths the word "chemo" to me in a joking manner. He's trying to keep a positive attitude. I'm grateful for that. I smile back and try to laugh along. I wish I could be so optimistic.
We head down to radiology; which is clear down at the other end of the hospital. Scott is so weak from not eating that he walks slow. That is a change. I'm usually the one practically running to keep up with him. When we get there, I have a weird deja vu feeling. Oh yah, we were just here last Friday! Scott says what I am thinking.
He walks into the room and and I start a text to my family. That's when I lose it! I'm crying as I type the words. Pure, raw emotion about everything that is happening right then. I chose to text my family - my siblings and parents - because they are my safe place. I know they will listen and support me no matter what. It feels good to get it out. I wipe my face and put on a happy face before Scott gets out of the room. We're glad to get out of there. We go get some lunch at Panda Express and talk about what we're going to tell our kids. We decide that we won't tell them anything until we talk to the cancer doc. Hopefully that will be soon. The waiting is torture. Two docs say he has cancer. Will the cancer doc's opinion be any different? It's all just so surreal. This day has been so long already, and it's only halfway over.
We go home and talk to the kids; but just tell them that Daddy had his test today and we'll find out more info tomorrow. We go about life as usual. I send a group text to some church friends with an update, one of which is somewhat aware of the situation. She was in our church lesson on Sunday and has been texting me off and on all day to see how things are going. Then I call my sister to talk to her. She can always help me calm down. I'm on the phone for literally less than five minutes when these church friends that I just texted show up at my doorstep with a gift and some hugs. Wow! That was awesome! Talk about feeling the love! That meant so much to me that they came over in a time of need. And the timing was perfect! I found out later that they had actually been planning throughout the day when they would come over, but coming over right after the text makes for a better story. They talk to us briefly and we say Scott "might" have cancer, even though we're 90% sure he does. When they leave, I get dinner for the kids. He gets a phone call as I'm saying goodbye to the friends and he seems agitated and says he wants to go for a walk. I ask him to wait; I'd like to go with him. After I get the kids situated with dinner, we leave for a walk and we're not even out of the driveway when he says, "That was the GI doc on the phone. He got the CT results back. I DO have colon cancer and it has spread to the liver and the lungs. He wants to send us to a cancer doc to start treatment ASAP, probably tomorrow or Wednesday. He wants to meet with us again on Thursday when he has the final results from the colonoscopy, but based on his experience, he knows I have cancer." My head is spinning; I'm sure his is too. We walk hand in hand in silence for a while. We walk around the neighborhood and decide to stop by the house of a couple we know dealing with this same situation. She has stage 4 breast cancer and is young herself, only 5 years older than Scott. We knock, but there's no answer. I'll text her tomorrow, I think. Then we turn around and head home. We stop by our neighbors house across the street to let them know of the situation. They helped us with carpool today because I couldn't pick up the kids due to our extended stay at the hospital. We need to let them know that our schedule will be a bit crazy for the next little while and need to ask for their continued help. They are very understanding and say they will include us in their prayers. We are grateful.
Going home is hard. How can we continue to "play dumb" with the kids? We need to talk to that cancer doc first. There are still so many unanswered questions and we want to be able to have those answers for them. We hope we can get in tomorrow. I spend the evening answering a mountain of texts and updating family and ward friends about what we know so far. We finally go to bed after what seems like the longest day ever. We both cry and don't get much sleep that night. Tomorrow is going to be even longer.
Friday, January 25, 2019
A Long Weekend
Chapter 2 - Waiting
Saturday, January 12, 2019
I wake up in a daze, hoping I had a nightmare, but knowing it was all too real. I still feel reassured that whatever happens it will be okay; whatever okay means I don't know, but I cling to that hope and reassurance. I will need it to guide me through this process.
I'm glad I turned my phone off; I was able to sleep through the many texts from concerned family members about updates. When we get out of bed, I respond that I'll send out a group text shortly with updates. We tell the kids about the two masses and that Dad needs a colonoscopy on Monday. We just need to wait until then to find out more information. That's the info I give the family members too, and ask them to start praying, A LOT.
We go about our daily routines and try to pretend all is normal. It's not.
Sunday, January 13, 2019
I have a morning meeting at the church that I don't want to attend. This meeting consists of members holding leadership positions in our local congregation, more commonly known as a ward, who come together and discuss the needs of others in our ward and how we can help them. I don't want to mention anything about Friday, because we don't know anything definitively yet, but I feel like maybe if I say something I can ask them to pray for us. The more people praying for us the better, right? Right! The meeting this time consists of a lot of business and calendar items. Since it's been a while since we've met and it's a new year and there are changes to discuss, that's what the meeting consists of. I'm glad because I don't want to go into a lot of detail about our Friday night adventure, because I'll probably start crying. I still don't want to be there and feel like I'm in someone's else's body and living someone else's life. I insert my comments every once in a while, feeling like I'm being a tad bit more ornery than usual, considering what's been going on. The meeting is almost over and about to be adjourned when I blurt out the events of Friday night. I tell the same story; they found two masses in Scott's body and he's getting a colonoscopy tomorrow. Please pray for us. Looks of concern and love permeate the room. One man, the leader of Scott's priesthood group in the church, asks if we had anything biopsied. "No, not yet, he's just doing the colonoscopy for now."
"Would he like a blessing?" he asks. "And would you like one too?"
In our church, we believe in the power of priesthood blessings. These blessings can be administered by anyone with proper authority to do so. This authority is the same priesthood authority that Jesus Christ himself had and gave to his apostles, and it has been passed down to the current elders of the church. It's as if Jesus Christ himself were there pronouncing as blessing on your head.
"Yes, blessings would be great," I say. "We could really use comfort and strength at this time."
"I'll get something arranged and come by tonight," he says.
Just one of so many acts of kindness that our family will receive through this process.
I come home and the rest of the family is getting ready for church. I mention to Scott about the blessings later tonight. "I thought you didn't want to mention anything," he said. "I changed my mind," I reply. "I'd like them to pray for us too." He's fine with that. There is strength in numbers.
Church is uplifting as usual. The first meeting consists of partaking of the sacrament, in remembrance of Christ's sacrifice for us. It's always a special experience. My two eldest priesthood-holding sons are able to participate in this ordinance. It makes my mama heart happy to see them perform this reverent task. After the sacrament, ward members give talks at the pulpit about gospel principles. A couple who have lived in our neighborhood for a long time give talks and do an amazing job. They say just what I need to hear.
The next hour of church is my favorite. I get to spend time with 20 of the most amazing girls on this planet! They range in age from 11-18. This particular Sunday, we are separated into age groups, and I am with the 15-18-year-olds. My daughter is in this group for the first time this year. I am thrilled to have her and not have to wait until her birthday in April. We welcome the new girls and go over some class business, which takes a while since we also haven't met for a while and with the new year comes changes that we need to discuss. We finish class business and I turn the time over to another leader for our lesson. She gives an amazing lesson on how we can reach out to others in our class in friendship and love. We discuss how we can help those who aren't attending to begin attending. She then emphasizes that there are people in class who also need our love and support and concludes her lesson. She has done an amazing job, as always. We feel happy, peaceful and uplifted as we ponder the things we have discussed. There are five minutes left and my heart is pounding. I have to tell the girls about our situation. Again, I blurt out what happened on Friday and ask for the girl's faith and prayers. I am bawling and so is my daughter. There is an enormous amount of love in that room. We end the lesson and there are hugs all around. I love these girls like they're my own and I tell them that. They say they will pray for us and to keep them updated.
We go home and enjoy some family time. Scott's starts his liquid only intake diet of Gatorade, water, juice, etc. before he starts drinking the disgusting GoLightly clean-out-your-insides drink to prep for the colonoscopy. He is hungry and I feel bad that he can't join us for dinner.
The priesthood brethren come later that night to give us blessings. We again give a summary of the weekend's events and they proceed with the blessings. I don't remember what was said in mine; I usually don't; I should really pay better attention. I do remember that in Scott's blessings it is mentioned that God's plan and timing is not always our plan or timing, but there is a reason for this trial and that reason will be revealed to us when the time is right. Hmmm.....sounds very similar to the prayer I uttered on Friday night. Coincidence, I think not! :)
Saturday, January 12, 2019
I wake up in a daze, hoping I had a nightmare, but knowing it was all too real. I still feel reassured that whatever happens it will be okay; whatever okay means I don't know, but I cling to that hope and reassurance. I will need it to guide me through this process.
I'm glad I turned my phone off; I was able to sleep through the many texts from concerned family members about updates. When we get out of bed, I respond that I'll send out a group text shortly with updates. We tell the kids about the two masses and that Dad needs a colonoscopy on Monday. We just need to wait until then to find out more information. That's the info I give the family members too, and ask them to start praying, A LOT.
We go about our daily routines and try to pretend all is normal. It's not.
Sunday, January 13, 2019
I have a morning meeting at the church that I don't want to attend. This meeting consists of members holding leadership positions in our local congregation, more commonly known as a ward, who come together and discuss the needs of others in our ward and how we can help them. I don't want to mention anything about Friday, because we don't know anything definitively yet, but I feel like maybe if I say something I can ask them to pray for us. The more people praying for us the better, right? Right! The meeting this time consists of a lot of business and calendar items. Since it's been a while since we've met and it's a new year and there are changes to discuss, that's what the meeting consists of. I'm glad because I don't want to go into a lot of detail about our Friday night adventure, because I'll probably start crying. I still don't want to be there and feel like I'm in someone's else's body and living someone else's life. I insert my comments every once in a while, feeling like I'm being a tad bit more ornery than usual, considering what's been going on. The meeting is almost over and about to be adjourned when I blurt out the events of Friday night. I tell the same story; they found two masses in Scott's body and he's getting a colonoscopy tomorrow. Please pray for us. Looks of concern and love permeate the room. One man, the leader of Scott's priesthood group in the church, asks if we had anything biopsied. "No, not yet, he's just doing the colonoscopy for now."
"Would he like a blessing?" he asks. "And would you like one too?"
In our church, we believe in the power of priesthood blessings. These blessings can be administered by anyone with proper authority to do so. This authority is the same priesthood authority that Jesus Christ himself had and gave to his apostles, and it has been passed down to the current elders of the church. It's as if Jesus Christ himself were there pronouncing as blessing on your head.
"Yes, blessings would be great," I say. "We could really use comfort and strength at this time."
"I'll get something arranged and come by tonight," he says.
Just one of so many acts of kindness that our family will receive through this process.
I come home and the rest of the family is getting ready for church. I mention to Scott about the blessings later tonight. "I thought you didn't want to mention anything," he said. "I changed my mind," I reply. "I'd like them to pray for us too." He's fine with that. There is strength in numbers.
Church is uplifting as usual. The first meeting consists of partaking of the sacrament, in remembrance of Christ's sacrifice for us. It's always a special experience. My two eldest priesthood-holding sons are able to participate in this ordinance. It makes my mama heart happy to see them perform this reverent task. After the sacrament, ward members give talks at the pulpit about gospel principles. A couple who have lived in our neighborhood for a long time give talks and do an amazing job. They say just what I need to hear.
The next hour of church is my favorite. I get to spend time with 20 of the most amazing girls on this planet! They range in age from 11-18. This particular Sunday, we are separated into age groups, and I am with the 15-18-year-olds. My daughter is in this group for the first time this year. I am thrilled to have her and not have to wait until her birthday in April. We welcome the new girls and go over some class business, which takes a while since we also haven't met for a while and with the new year comes changes that we need to discuss. We finish class business and I turn the time over to another leader for our lesson. She gives an amazing lesson on how we can reach out to others in our class in friendship and love. We discuss how we can help those who aren't attending to begin attending. She then emphasizes that there are people in class who also need our love and support and concludes her lesson. She has done an amazing job, as always. We feel happy, peaceful and uplifted as we ponder the things we have discussed. There are five minutes left and my heart is pounding. I have to tell the girls about our situation. Again, I blurt out what happened on Friday and ask for the girl's faith and prayers. I am bawling and so is my daughter. There is an enormous amount of love in that room. We end the lesson and there are hugs all around. I love these girls like they're my own and I tell them that. They say they will pray for us and to keep them updated.
We go home and enjoy some family time. Scott's starts his liquid only intake diet of Gatorade, water, juice, etc. before he starts drinking the disgusting GoLightly clean-out-your-insides drink to prep for the colonoscopy. He is hungry and I feel bad that he can't join us for dinner.
The priesthood brethren come later that night to give us blessings. We again give a summary of the weekend's events and they proceed with the blessings. I don't remember what was said in mine; I usually don't; I should really pay better attention. I do remember that in Scott's blessings it is mentioned that God's plan and timing is not always our plan or timing, but there is a reason for this trial and that reason will be revealed to us when the time is right. Hmmm.....sounds very similar to the prayer I uttered on Friday night. Coincidence, I think not! :)
Wednesday, January 23, 2019
Plot Twist!
January 23, 2019
I'm sitting here in the oncologist's office while my husband of almost 20 years, Scott, sits in a chair receiving chemotherapy injections into a port in his chest. He's 45 years old, and the youngest one here. Diagnosis: stage 4 colon cancer that has spread to the liver and the lungs, a diagnosis that came eight days earlier! What the ...? How did this happen to someone so young and healthy and we never noticed a thing? I created this blog to put it all out there ... how we got to this point, all my thoughts and feelings, our family's ups and downs, our journey, because that's what I believe this is. I believe there is a reason for everything and that we're supposed to learn something from this. Thank you for sharing in the journey with us. Please come back often to visit. Let the journey begin! Keep your arms and legs inside at all times; it's going to be a bumpy ride :)
Chapter 1 - The best and worst day, and a diagnosis ... sort of?
January 11, 2019
Family is coming into town today. Our middle son is thirteen and will be ordained to the office of a teacher in the Aaronic Priesthood in the Church of Jesus Christ of Latter-day Saints, the church to which we belong to and actively participate. We weren't expecting this day until August when he turned 14, but the church made a recent policy change stating that all youth could participate with the age group they would be in that calendar year. So he would be with the 14-15 year-olds beginning in January, not August. He was really excited, because he is the youngest of his peer group and grade and he's always had to wait until his birthday and hated it. He has two cousins that will also be advancing in the priesthood, so Scott's family arranged for all three boys to be ordained at the same time. That's just how we roll in our family. We're quirky like that. I'm glad it worked out. It will be a special night.
Scott has been complaining of pains in his side all day; he says we should go to the instacare after our son's ordination. I think it's his gallbladder; his older brother had his gallbladder removed a few weeks earlier. We know it's not his appendix; he had that removed a few years ago. I tell him let's plan on it; and we'll talk to them about his cough too. Maybe they can do more then his primary care physician could. He's had a persistent cough since Thanksgiving that won't go away. He's been through three rounds of antibiotics, steroids, an inhaler, and a chest X-ray. No pneumonia or bronchitis. The doctor refers him to a pulmunologist. His earliest appointment isn't until April. That's a long time to have a cough without treatment. I wish the doctors could figure it out; hoping for some answers tonight.
We go to the church for the ordination; it's great to see everyone. I'm so proud of my son and the wonderful young man he is turning out to be. The ordinations go great. Our eldest son gets to ordain our younger son. It is an amazing experience. We get a few pictures after. Scott is still in a lot of pain; you can see it in his face.
We have to leave early to go the instacare. I want to visit with family and enjoy the banana split bar that we have planned, but know that this is more important. My sis-in-law takes charge of that and helps with the kids. I'm grateful. Scott asks his dad and brothers to give him a priesthood blessing to calm his nerves before he goes, which helps him a ton! He hates doctors and hospitals, especially needles. We're both glad that his family is here to help at this time. We tell everyone we'll keep them updated and go to the instacare. We're in for a long night!
We go to the instacare and there's no one else in the waiting room. Yay! Hopefully we won't have to wait long. They get us back quickly after we check in. It pains me to see my husband in pain as he fill out all the check-in information. I offer to do it for him, but he declines. We get called back quickly and the usual medical history and vitals is taken by the nurse. We don't have to wait long for the doctor to come back. She examines Scott and determines that she needs to take a CT scan but she can't order one this late at night, so she sends us to the ER. She says she'll refund our co-pay. That was nice of her.
We go to the ER and the check-in process begins again. They get us back to a room and start him on some pain meds. Scott cringes when the nurse puts the needle in. She's really nice. I've always thought it takes a special person to be a nurse. Patient and compassionate; I feel that from her. While Scott waits for the ultrasound tech and the doc I go out in the waiting room and call our 15-year-old daughter to check in. Things are going fine; they got home safe. She asks me for an update but I tell her there isn't really one, yet. I ignore the texts from family members asking the same thing. We've been "at the doctor's office" for about two hours now with no update.
The doc comes in and again gets a history. We go over the details once again, he's had this pain for 24 hours that won't go away; he's had a persistent cough for 6 weeks. He's nice, very young. Looks like he just got out of med school. The ultrasound tech comes in a little bit later and Scott is still in pain, but bears through it. I watch intently as the machine sees inside my husband's body. Medical stuff fascinates me. When he's done they send us down to radiology to get a CT scan. Then we wait, and wait, and wait for results. By now it's 11:30 PM. We've been here for three hours already.
An hour later, the doc comes in with the nurse to review ultrasound and CT results. The goods news is his gall bladder is fine. And Scott's pain is gone. Yay! We can go home now, right? Wrong! "We found a mass on your colon and on your liver," says the doc. (This is a very paraphrased version of what he said) "That's usually indicative of cancer. We'll know more after we do a colonoscopy on Monday. I've scheduled you for Monday morning; they don't do colonoscopies on weekends. The mass in your liver is probably cancer too; you'll have to get it biopsied to find out. Colonoscopy is step 1; liver biopsy comes next." As I listen to him say all of this, I'm confused. Does he have cancer or not? I think. Why is this doctor talking about surgery, chemo, and radiation, if he might not have it? Or does he? I look over at my husband, then the nurse, who is standing in the corner with her head down. I'm trying to absorb and process all of this information. My husband appears to be doing the same. I wonder what's going on in his head. I look up at the nurse, trying to obtain eye contact with her. She finally looks up at me and asks, "Are you ok?" "Yes," I lie. What is happening here?, I continue to think.
We finally are discharged at 1:00 AM. We drive home in shock, not really knowing what to think. It's going to be a long weekend as we wait for the colonoscopy. We wonder what to tell family; we'll just tell them about the two masses. We won't mention that cancer word for now, because we're both so puzzled. Scott's side pain is gone and doesn't come back.
As I kneel by my bed early that morning before I go to sleep, I don't know what to say. I'm so sleep deprived that I wonder if my words will even make it up to heaven, or if I'll fall asleep on my knees. I wait for the words to come out. "Heavenly Father, please help me to accept thy will, no matter the outcome," I mutter. I know those are definitely NOT my words. I always want things to go my way; it's very hard for me to accept that things should go differently than how I want them to. Those words are what will sustain me through this process. It's exactly what I need to feel calm and sleep peacefully.
I'm sitting here in the oncologist's office while my husband of almost 20 years, Scott, sits in a chair receiving chemotherapy injections into a port in his chest. He's 45 years old, and the youngest one here. Diagnosis: stage 4 colon cancer that has spread to the liver and the lungs, a diagnosis that came eight days earlier! What the ...? How did this happen to someone so young and healthy and we never noticed a thing? I created this blog to put it all out there ... how we got to this point, all my thoughts and feelings, our family's ups and downs, our journey, because that's what I believe this is. I believe there is a reason for everything and that we're supposed to learn something from this. Thank you for sharing in the journey with us. Please come back often to visit. Let the journey begin! Keep your arms and legs inside at all times; it's going to be a bumpy ride :)
Chapter 1 - The best and worst day, and a diagnosis ... sort of?
January 11, 2019
Family is coming into town today. Our middle son is thirteen and will be ordained to the office of a teacher in the Aaronic Priesthood in the Church of Jesus Christ of Latter-day Saints, the church to which we belong to and actively participate. We weren't expecting this day until August when he turned 14, but the church made a recent policy change stating that all youth could participate with the age group they would be in that calendar year. So he would be with the 14-15 year-olds beginning in January, not August. He was really excited, because he is the youngest of his peer group and grade and he's always had to wait until his birthday and hated it. He has two cousins that will also be advancing in the priesthood, so Scott's family arranged for all three boys to be ordained at the same time. That's just how we roll in our family. We're quirky like that. I'm glad it worked out. It will be a special night.
Scott has been complaining of pains in his side all day; he says we should go to the instacare after our son's ordination. I think it's his gallbladder; his older brother had his gallbladder removed a few weeks earlier. We know it's not his appendix; he had that removed a few years ago. I tell him let's plan on it; and we'll talk to them about his cough too. Maybe they can do more then his primary care physician could. He's had a persistent cough since Thanksgiving that won't go away. He's been through three rounds of antibiotics, steroids, an inhaler, and a chest X-ray. No pneumonia or bronchitis. The doctor refers him to a pulmunologist. His earliest appointment isn't until April. That's a long time to have a cough without treatment. I wish the doctors could figure it out; hoping for some answers tonight.
We go to the church for the ordination; it's great to see everyone. I'm so proud of my son and the wonderful young man he is turning out to be. The ordinations go great. Our eldest son gets to ordain our younger son. It is an amazing experience. We get a few pictures after. Scott is still in a lot of pain; you can see it in his face.
We have to leave early to go the instacare. I want to visit with family and enjoy the banana split bar that we have planned, but know that this is more important. My sis-in-law takes charge of that and helps with the kids. I'm grateful. Scott asks his dad and brothers to give him a priesthood blessing to calm his nerves before he goes, which helps him a ton! He hates doctors and hospitals, especially needles. We're both glad that his family is here to help at this time. We tell everyone we'll keep them updated and go to the instacare. We're in for a long night!
We go to the instacare and there's no one else in the waiting room. Yay! Hopefully we won't have to wait long. They get us back quickly after we check in. It pains me to see my husband in pain as he fill out all the check-in information. I offer to do it for him, but he declines. We get called back quickly and the usual medical history and vitals is taken by the nurse. We don't have to wait long for the doctor to come back. She examines Scott and determines that she needs to take a CT scan but she can't order one this late at night, so she sends us to the ER. She says she'll refund our co-pay. That was nice of her.
We go to the ER and the check-in process begins again. They get us back to a room and start him on some pain meds. Scott cringes when the nurse puts the needle in. She's really nice. I've always thought it takes a special person to be a nurse. Patient and compassionate; I feel that from her. While Scott waits for the ultrasound tech and the doc I go out in the waiting room and call our 15-year-old daughter to check in. Things are going fine; they got home safe. She asks me for an update but I tell her there isn't really one, yet. I ignore the texts from family members asking the same thing. We've been "at the doctor's office" for about two hours now with no update.
The doc comes in and again gets a history. We go over the details once again, he's had this pain for 24 hours that won't go away; he's had a persistent cough for 6 weeks. He's nice, very young. Looks like he just got out of med school. The ultrasound tech comes in a little bit later and Scott is still in pain, but bears through it. I watch intently as the machine sees inside my husband's body. Medical stuff fascinates me. When he's done they send us down to radiology to get a CT scan. Then we wait, and wait, and wait for results. By now it's 11:30 PM. We've been here for three hours already.
An hour later, the doc comes in with the nurse to review ultrasound and CT results. The goods news is his gall bladder is fine. And Scott's pain is gone. Yay! We can go home now, right? Wrong! "We found a mass on your colon and on your liver," says the doc. (This is a very paraphrased version of what he said) "That's usually indicative of cancer. We'll know more after we do a colonoscopy on Monday. I've scheduled you for Monday morning; they don't do colonoscopies on weekends. The mass in your liver is probably cancer too; you'll have to get it biopsied to find out. Colonoscopy is step 1; liver biopsy comes next." As I listen to him say all of this, I'm confused. Does he have cancer or not? I think. Why is this doctor talking about surgery, chemo, and radiation, if he might not have it? Or does he? I look over at my husband, then the nurse, who is standing in the corner with her head down. I'm trying to absorb and process all of this information. My husband appears to be doing the same. I wonder what's going on in his head. I look up at the nurse, trying to obtain eye contact with her. She finally looks up at me and asks, "Are you ok?" "Yes," I lie. What is happening here?, I continue to think.
We finally are discharged at 1:00 AM. We drive home in shock, not really knowing what to think. It's going to be a long weekend as we wait for the colonoscopy. We wonder what to tell family; we'll just tell them about the two masses. We won't mention that cancer word for now, because we're both so puzzled. Scott's side pain is gone and doesn't come back.
As I kneel by my bed early that morning before I go to sleep, I don't know what to say. I'm so sleep deprived that I wonder if my words will even make it up to heaven, or if I'll fall asleep on my knees. I wait for the words to come out. "Heavenly Father, please help me to accept thy will, no matter the outcome," I mutter. I know those are definitely NOT my words. I always want things to go my way; it's very hard for me to accept that things should go differently than how I want them to. Those words are what will sustain me through this process. It's exactly what I need to feel calm and sleep peacefully.
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