My life has taken a really strange and unexpected turn. I am still in shock about this, and feel like I need to write. So much has happened in the last several weeks that I don’t know where to begin.
I found out that I have breast cancer. If that was not shocking enough, it’s really bad. Even though I have felt totally fine, apparently I am “incurable” according to doctors. My cancer is in Stage 4, which is the worst stage. It has spread from a lump in my right breast, to 24 lymph nodes under my arm (out of 25), to two places on my spine, and one place on my pelvis. When it spreads beyond the lymph nodes, and is out in your body in various places, it is considered Stage 4, and they don’t consider it curable. If I was told that my diagnosis was all a mistake, I could believe it, because I feel totally fine!
So let me back up a little bit and try to explain how I got to this point. Two months ago I didn’t have any suspicion that anything was wrong. We were in San Diego. Branden had just secured a new job in Utah, and our minds were full of everything about our move. With four kids, we cared a lot about where we would end up. We both have family in Utah, and my husband grew up here, so we knew it would be a great place to raise our kids. We were excited to finally be living in an affordable housing market so that we could be home owners again. We spent our evenings enthusiastically researching the best school districts in the area for great neighborhoods and houses. As we were figuring out where we would move, and how we would move, I was making a list of things to do before we left San Diego. On my list was a doctor’s appointment at the Breast Clinic. I have had a lump that I noticed for about 2 ½ – 3 years now, that I knew I should get checked out at some point. Before you roll your eyes and say that I was crazy to not have checked it out before, I must defend myself. For the past 3 years I have been either pregnant or breast-feeding, and it is pretty normal to have lumps in either situation.
The day before we left to go to Utah for Branden to start his new job, I had my appointment. We had found a house, but could not move into it for another month, but Branden needed to get started on his job. Alec (my oldest son) had the week off for Spring break, so we decided to go with Branden to Utah for his first week of work. We would stay at his parent’s house for the week, and then I would head back to San Diego with the kids. Branden would work for the next three weeks and we would prepare for our move.
When I went in for my appointment, I expected that I would have a mammogram and probably even a biopsy while I was there. Instead, I only was scheduled for an initial exam. The doctor felt the lump and, of course, felt all over the place to determine if there were any more lumps. I explained to her that even though the lump was pretty big, I wasn’t too worried about it because I had been pregnant or nursing for so long and that I was sure it was just a clogged mild duct or something like that, but that I knew it would probably need to be surgically removed by now because it was so big and hard, and obviously wasn’t going to just go away on its own.
She seemed a little more concerned than I had expected. She asked me a few questions about when I had first felt it, etc., and then told me that I had another lump up in my armpit. I froze, “I do?!” I asked, alarmed. “Where?” I had never felt another lump before, or I would have definitely been more concerned about this. She helped me find the lump way high up in my armpit. She said that there were possibly a couple other little bumps up there, and that that was where my lymph nodes were.
My mind raced. I thought of an explanation. I had felt extremely tired the week before for a few days, and I said, “If I have recently had some sort of infection, could that show up in my lymph nodes anywhere?” She said that it could. I grasped on to that and tried to convince myself and the doctor that that must be what it was. The doctor told me that she was going to make some calls and try to schedule me for a mammogram and ultrasound the next morning. She said that it was very hard to get a mammogram appointment, and that is why they had not scheduled me for one initially.
I talked to Branden about it that night, and looked up a bunch of stuff on the internet. He was slightly concerned, but said that it was probably nothing, but good that they were going to check it out more thoroughly. That night I woke up feeling very scared, and I talked to Branden. I said, “If it is breast cancer, it would have to be at least at Stage 2B because it has spread to a lymph node or two. But, . . . I’m sure it’s not. I’m sure that it is just a weird coincidence that that lymph node under my arm is swollen.” I spent the rest of the night trying to convince myself of that so that I could sleep.
In the morning I went in for my ultrasound and mammogram. After both, the doctor told me that while it was probably benign, as most of these things are, he still didn’t see what he needed to see to know that it was okay. He needed a biopsy to rule out cancer. I agreed that we should do one, and we did. Branden was finishing his last day at work, and I called him to tell him what was going on. He asked me if I needed him there for the biopsy, and I told him no. I knew he had a lot to do for his last day, and I told him that it was no big deal. After the biopsy we met at home and finished packing up for our trip. When Alec came home from school we began our long trip to Utah, and drove until about 2AM.
We spent the weekend helping Branden get ready for his first day of work at his new job. I had a hard time not thinking about the biopsy but I tried to keep it to myself. I wanted to be supportive of Branden, and I knew he needed to focus on his new job. I did share my concern with him one night, but we both quickly agreed that everything was okay. Branden even went so far as to say that I should have put off my doctor’s appointment ‘til later so that we wouldn’t be worrying about it right then when we were so busy with the new job and moving. I had a sense that something was not right ever since the doctor found a lump under my arm, but I was trying hard to convince myself that everything had to be okay.
The next day while Branden was at his first day of his new job, I was playing with my kids along with my mother-in-law (who knew nothing of my lump or biopsy) and my phone rang. It was a San Diego number and I went in the other room to take it discreetly. A kind sounding lady was on the other end and she told me that she wanted to talk to me about the results of my biopsy. She asked me if I had a minute and was in a place where I could talk. This couldn’t be good. I replied, “yes” and she delivered the news that I knew was coming, despite my greatest efforts to deny the obvious.
“The biopsy showed that the lump is cancerous.” Adrenaline immediately coursed through my body. I was completely shocked on one level, but not really that surprised on another level. I tried to sound calm and ask the pertinent questions. I spoke with her for a few minutes, and she told me that it would be considered Stage 2 because of the size of the tumor. I told her that we had also found a lump in my armpit and asked if that would put me at Stage 2B if it was malignant too, and she replied “yes”.
She told me that I would need surgery, of course, and that I would also need to go through chemotherapy. “Will I lose my hair?” I asked. “Yes” she gently answered. She said that chemotherapy would probably be for about 4-5 months, and I don’t really remember anything else she told me in that conversation. I know that she told me she was so sorry to tell me the news.
When I got off the phone I went upstairs to the room we were staying in and closed the door. I got down on my knees right away and offered up a plea to God. “Oh Heavenly Father, I’m so scared!! I can’t believe it’s cancer. Please let me be okay. Please help me to be okay, and help me know how to tell Branden.” Tears streamed down my face, and then I quickly tried to compose myself so that I could go down and play with my kids without seeming upset. I wasn’t ready to tell my mother-in-law what was going on yet. I needed a little time for it to sink in for me first. I wanted to tell Branden first.
But before Branden got home I called my sister a few hours after I first received the news. She was shocked, and questioned how I knew it was really cancer, and I told her the whole story of the biopsy. She was surprised that I had not told her what was going on, and I told her that I didn’t want to scare anyone unnecessarily. I cried a little bit to her on the phone and told her that I was really worried about how Branden would take it, and that it was horrible timing because I wanted him to be able to just focus on his new job.
Branden got home a little later that night, which was to be expected on his first day. When he came home we ate and I looked for the opportunity to talk to him. I couldn’t keep it to myself anymore. I asked him to come upstairs and talk with me for a minute. When we shut the door, I got right to the point and told him that I had received the results of the biopsy, and stated firmly to him that it was cancer. He dropped to his knees and put his head in his hands and said, “How could this happen.” I said, “Branden, it’s going to be okay. It’s very curable at this stage, and it’s going to be okay. I do have to do chemotherapy, and she said I’m going to lose my hair and everything, but it’s just what we have to do.” Another shocked reaction from Branden when I mentioned chemo and losing my hair. We held each other and talked for a few minutes more, said a prayer together, and went out to be with everyone before our absence would be noticed too much.
Branden had slumped shoulders the rest of the evening. At one point his mom asked him if everything was okay. He replied, “yes”, and she said, “Okay, well you just look like the weight of the world is on your shoulders or something.”
We waited a couple of days before sharing our news with Branden’s family. I called my mom who is on a church welfare mission in Fresno and told her what was going on. I assured her that I was a strong person, and that everything would be okay. I also called my brother, who is not the best about calling. The first thing he said was, “I was just thinking of calling you this morning.” I was surprised,
“Why?” I said.
“I don’t know” was his reply, “I just was out on a run and I started thinking about you and thought that I should give you a call.”
“Well”, I said, “maybe there was a reason you were thinking of me.”
After sharing the news with both of our families, we felt a huge burden to figure out what we were supposed to do. Branden made calls at work to make sure our insurance was in place, and I made calls to different cancer clinics around Utah. I was on Branden’s health plan, and since he had already started his new job, we had Utah insurance, so I would need to be treated here.
We made the decision to extend our stay in Utah so that I could get into surgery as quickly as possible. Alec was missing school, and had already missed a lot this year, but that was the least of our concerns at that point! It was so hectic having my kids at my in-laws house for too long, because they were into everything. My three littlest are ages 3, 3, and 1. Their house was definitely fun for my kids, but not child-proof at all!
After many phone calls with doctors, we finally decided on a Dr. “R” in Utah County. He was able to get us in much quicker than the Huntsman doctors, and sounded like he could get us into surgery sooner as well. I had an initial appointment with him and found him to be very kind. He was able to get me in for surgery with a very reputable surgeon on the next Friday.
I was anxious for the surgery. I wanted to get the cancer out of my body as soon as possible.
After surgery I stayed overnight at the hospital rather than going home because I was vomiting from the anesthesia. I went to stay with my sister the following week so that she could watch my kids while I recuperated. I went home from the hospital with a drain coming out of my side to drain the lymph fluid out of me since all of my lymph nodes had been removed from my right side under my arm. It was a disgusting little contraption that filled with yellow fluid throughout the day and needed to be drained occasionally. I had to protect it so that my kids would not accidentally yank it out from the stitched place where the tube came out of my side.
During surgery the surgeon removed the “sentinel node” and it was immediately tested for cancer. When the test showed that it was indeed malignant, then, by protocol, all the rest of the lymph nodes were removed. There were 25 in all. I had to wait a few days to receive the pathology on those lymph nodes.
Recovery was okay, but I felt more frustrated with the drain than I should have. I had to wait until there was less than a certain amount of fluid draining before it could get removed. I was planning on going back to San Diego that weekend, and didn’t want to go back with the drain still in place. I could not move my arm freely, and definitely couldn’t lift my kids, but they were in good hands with my sister and her older kids who were happy to play with them a lot while I rested.
When the surgeon called me that Thursday the news was not good. First, the pathology showed that she had not gotten completely clean margins around the lump in my breast. She would need to go in again (another surgery) and scrape a little more tissue out under the area where the lump had been. She said that this would be a quick and minor surgery that was not nearly as hard to recover from.
But the worse news was that out of the 25 lymph nodes that had been removed, 24 of them were malignant. I said, “Really?!” I said, “That’s not good.” She confirmed that that was definitely not good news. She said that would put me at Stage 3B rather than at stage 2 as we had initially thought.
My heart sunk. The lump was also slightly bigger than we had thought before surgery too. It was 3.5 cm. rather than 2.7. The surgeon said that while my blood work seemed to indicate that my cancer had not metastasized, she felt that we should do a PET scan of my whole body to make sure. I was scheduled to come in the next day for the follow up surgery and PET scan.
When I told Branden about the pathology results over the phone that night, he came through for me and said just what I needed to hear. I was scared myself, but I was also worried about how he would handle it. I felt like I had been trying to be strong for both of us, and now he was being brave just when I needed it the most.
First he told me that he wished he could be there to give me a big hug. Then he told me that he knew everything would be okay. He said, “Denise, so what if it’s Stage 3 instead of Stage 2?! I know that you are going to make it through this, so they could tell us that you are Stage 19 and it wouldn’t make any difference!”
I love Branden’s way of overstating things!! I laughed out loud and said, “Branden, that’s just what I needed to hear. You are right, I am going to make it through this! Thank you for being so confident sounding. That is just what I needed to hear. But, I’ll be honest, Branden, if they tell me I’m in Stage 19 I’m going to be a little bit worried!!!”
The surgery was uneventful, and easier to recover from than the first surgery. I still was not able to remove the drain though. It was still collecting too much fluid. The PET scan was a bigger deal than I realized. It took about an hour, and I was not able to move the whole time. I had to breath in and hold my breath several times during the test, and hold perfectly still.
When I was done I wanted to look at the PET scan. I knew that it was supposed to light up anywhere there was cancer. When I had looked at my chest X-ray before, I had been scared because I saw something on it that I suspected was a tumor in my lungs. I had waited, terrified, all weekend, only to find out that my chest X-ray was clear. I had been looking at my aortic valve instead of a tumor. I was mad at myself for being scared out of my mind all weekend unnecessarily. The doctor had told me ominously that if something did show up on my chest X-ray that it was considered “incurable”, but that he didn’t think that would be the case, and that we would discuss that when the time came if necessary. This whole thing had me so frozen with fear that I was having a hard time eating or sleeping. I was trying to get a grasp on things, but it was hard.
I had to look at the PET scan when I was done. I couldn’t stop myself from asking. The technician told me I could look, but that he couldn’t read it for me. I knew he probably could, but I didn’t argue. I told myself that if I saw anything suspicious looking I was not going to freak out because I was not trained to know what I was seeing.
Right away I could see a few spots that were bright. He told me that the brain and bladder were always lit up, but there were more bright spots than just those. I saw a couple places on my spine and one on my hip that were lit up. I asked him about those, and he said that he didn’t know why they were lit up. He said that sometimes it could be arthritis, but it could also be cancer. He was very kind and told me to be positive. He told me that his Dad had beat stage 4 prostate cancer, and that attitude was very important. I thanked him for letting me look, but was quickly wishing that I hadn’t. I kept all my fear inside me because it wouldn’t do any good to imagine that I had really seen something on my PET scan that showed my cancer had spread. It wouldn’t do me any good, and it wouldn’t do Branden any good.
We drove back to San Diego together with no answers. I felt a foreboding feeling about the PET scan, and I was still recovering from surgery and frustrated with the drain that was still attached to my side. The kids cried about half the way back to San Diego. Even though they are small, they could sense our stress, and it was wearing on all of us. I was unsure how I would be able to take care of the kids for the next few days by myself while Branden went back to Utah to work before coming home for our move. I didn’t want to scare Branden, but I calmly told him that I saw some stuff on the PET scan that looked like it was lit up. He reminded me what the doctor had said about my blood work, and told me that there was no way it had spread. I had him repeat what the doctor had said exactly about the blood work, and then I tried to believe it.
The next few days in San Diego I spent sorting through things and making final arrangements for our move. We had packers coming to pack everything, but there were still so many details I had to take care of, and stuff I needed to sort through. Mostly though, there were four kids who needed me, and I was hardly able to lift anyone because of my surgery, and I still had my darn drain!!
I called on Tuesday to find out if my results were in from the PET scan. I was told that they would be read the next day. Branden was scheduled to travel back home on Wednesday, the packers would come on Thursday, and we would get the moving truck loaded up and drive to Utah on Friday.
On Wednesday I called the doctor’s office again to enquire about the results. I had a worried feeling, and I wanted to hear the results sooner rather than later. The receptionist said she would call me back. A little while later she called back to tell me that the doctor had not had a chance to look at the PET scan yet, but that he would call me that night after he had looked them over. I repeated to her, “So, . . . He hasn’t looked at them yet?” Pause. “Correct” she said.
That was weird, and I tried to not think of what that meant. Branden called before his plane took off and asked if I had received the results yet. I told him that the doctor would be calling me later.
A friend from church called a short time later and asked if she could come by to help with the kids so that I could get some packing done that evening. I agreed, and she stopped by. Shortly after she arrived, about 7:30PM, I received the call from the doctor. I told her that I needed to take it and went out in our driveway to be alone while she watched the kids.
The doctor said he needed to talk to me about my PET scan results. Then he started stalling. He asked if my husband was home, and I said that he was traveling home as we spoke. I knew that bad news was coming, and I was so scared I was shaking a little bit.
Finally he told me that the PET scan showed that the cancer had spread to the bones. He told me that there were two spots on my spine and one on my pelvis. I asked him if that meant that I was in Stage 4, and he said, “Yes”. He told me that Stage 4 is considered “Incurable”.
When he said the word “incurable” I have never felt so hopeless before. I looked out at some kids riding their bikes past me and wondered if this was really happening. I calmly asked him if he was sure. He said that he was sure. He told me several times that he was so sorry to have to tell me this over the phone, and that he wished that my husband was there with me. I asked him if it was normal that I felt totally fine? He said that was sometimes the case. He told me that my survival rates were about 18-20% for five years, and down to about 5% for ten years. I told him that I had heard of a girl who beat Stage 4 cancer, and he quickly corrected that notion by saying, “Well, it depends on your definition of ’beat’”. He said that no one can say that they beat it only a year or two after, because it would come back. He said that at some point the cancer spreads too much and that it cannot be permanently cured. That is what Stage 4 is.
He apologized several times for telling me this news, but he would not let me get any hopes up. He told me that he needed to tell me the facts so that I could make the “hard decisions”. He even told me that one option was to not even treat it. I was baffled. I said, “Well of course I am going to try to treat it! I have four kids!!”
He said, “And that is what I would definitely recommend in your situation.” I had not cried yet, and my mind was racing trying to think of all the questions I should ask. I asked about chemo, and he said that we would reevaluate our plan, but that we could still probably start chemo in about three weeks as we had planned. Finally my voice cracked and tears started to pour as I asked him again, “Is it NORMAL that I feel JUST FINE??!!!”
Branden called when his plane landed, and I tried to avoid talking for long on the phone to him. I wanted to tell him in person. But before I could get off the phone with him he asked, “Have you heard from the doctor yet?” I said, “Yes”, and I told him that I would tell him about it when he got home. I knew when I said that that it wouldn’t fly. I couldn’t make him wait. I said, “Branden, it’s not good.” I told him that the cancer had spread and that I was in Stage 4. I told him in a rush that the doctor told me it was “incurable”. He was too shocked to say much, and a friend was waiting right there for him to take him home. He told me he would be home in half an hour.
When Branden got home Alec wanted to say hi to him, and Branden quickly tucked him in with a smile on his face. Then he told Alec that he needed to go to sleep, and he took me into our room. We laid down on our bed together and held each other and both of us began sobbing.
I am grateful that despite the long wait, I am finally on the treatment that I felt right about from the beginning. And the waiting has not caused the cancer to grow.
And really, I will just do my best to live with whatever comes my way, which is all that any of us can do anyway.