This month it has been 5 years since Joe finished his treatment for Lymphoma and was declared Cancer Free. For some reason because it's been 5 years I've been reflecting on that time a lot. I never took the time to really record what happened to us then, mostly because I was just trying to make it to the next day, but I think it's important to remember the bad times as well as the good, so here it goes.
In April of 2003 Joe started to get sick. I will spare everyone the gory details, but let's just say he didn't feel well and he had to go to the bathroom a lot more often than he would have liked. Because he's a guy and they never want to go to the doctor, he didn't really do anything about it for a couple of weeks, but at the beginning of May he finally decided to go. Up until that point in our marriage neither of us had had more than a cold or the flu, so we did not have a doctor we usually went to see. Joe decided to just go to the Insta-Care where the doctor told him his problems were minor and gave him a prescription sure to clear things up in 6 weeks. Not knowing any better, Joe use the medication for the prescribed 6 weeks and just rode it out. Unfortunately (since he had been misdiagnosed) he kept getting worse, not better. It got to the point where he was making trips to the bathroom at least every hour, if not more often. When he went back after 6 weeks the Insta-Care doctor said, "Well if that's not it I can't help you and you need to see a specialist." We tried to get an appointment for Joe with a gastroenterologist, and were told it would be 3 weeks. Again, not knowing any better, we just waited. In retrospect we should have taken him to the Emergency Room and demanded that he be seen. Now we know better.
By the time we got to see the gastroenterologist Joe was one very sick man. We had been roaming the Internet and trying to diagnose him ourselves and by that time we were pretty sure he had Crone's Disease or Gastroenteritis. Boy, were we wrong. After sending Joe for a Colonoscopy the doctor called us in to meet with him (on July 15, the day before Joe turned 23) and gave us the diagnosis. At first when he said Lymphoma that meant nothing to me. It wasn't until he used the word "Cancer" that I finally began to understand what he meant. I'm sure he told us a lot of stuff, but I don't remember any of it. I just remember he said Cancer.
Within the next week we met with a surgeon to talk about whether Joe would need to have part or all of his colon removed. He wanted to wait and hear what the oncologist had to say. On July 23rd Joe had a CT scan in the morning. In order to have an abdominal CT you have do drink a contrast solution they call "The Cocktail." It has the consistency of Mylanta and from what I Joe has told me it tastes like chalk with a failed attempt of fruit flavoring. He tried to go to work after that, but was throwing up and just couldn't do it. Just then he got a call on his from the office of Dr. Ford who was his new oncologist. He wasn't supposed to see them until the next week, but based on his CT scan and continued symptoms they wanted to see him that day. I got off of work and we both went in. We got there and I gave his name and the receptionist immediately jumped up to tell people Joe was there and started yelling about needing his chart. Their urgency was appreciated, and somewhat disturbing. We met with Dr. Ford and he determined that Joe's treatment needed to start that day.
I need to diverge for just a moment here to say how very amazing Dr. Ford and his staff at the Salt Lake Clinic were (I say “were” because that practice doesn't exist any more). Dr. Ford is a brilliant man who knew what to do to save Joe's life. I won't say he had the best bed-side manner or that he was 'fun' but we trusted him completely and it paid off. His office was staffed by the best group of nurses you could ever ask for. Mary and Michelle were personal favorites. Michelle had the best dry sense of humor of anyone I've ever met. I think that's necessary when you work with Cancer patients all day every day. The receptionist at the office, Roxanne, was also just amazing. She always remembered us and called us by name and greeted us with an infectious smile.
Back to the story - the first thing Dr. Ford needed to do was "stage" Joe's cancer. That mainly meant doing a bone-marrow biopsy to find out if the cancer had spread to the marrow. I can't remember if they offered to let me stay in the room for that, if they did I know I opted out. The thought of sitting there while he rammed a large needle into my husband's hip bone just about sent me over the edge. The way Joe describes it they really have to shove to get it in there and it was NOT pleasant. After that they hooked him up to have his first chemo treatment. One of the funniest moments of the whole ordeal was when Michelle asked Dr. Ford if there was "Time to Bank" (meaning for Joe to donate sperm to a sperm bank). Dr. Ford just told her no, but I think if he had said yes Joe would just have laughed at them. He was not in really good shape at the time. Anyway, we sat in the chemo room where they have big recliner chairs for the patients and TV to watch while Michelle hooked Joe up to an IV and told us a little bit about what to expect. As she squeezed the neon green liquid into Joe's tube she said "let me know if this starts to burn, because this stuff will eat right through your veins." Great. It was about 5:00 at this point and pretty much everyone had left because it was the night before a state holiday. It was eerie being there with just a couple of people and watching that green stuff drip into Joe knowing that it was going to make him really sick, and the hopefully save his life. When the IV was done they just sent us home.
Another side note on Joe's diagnosis - the bone marrow test came back negative so it was determined Joe had stage III Lymphoma. This means that he had tumors in multiple places in the body, both above and below the diaphragm (he had them in his colon and his chest), but not in the bone marrow. There are lots of different types of Lymphoma and Joe's was extra special because they couldn't even fit it into one of the official categories. It was most like Burkitt's Lymphoma (which is classified as a Highly Aggressive Lymphoma), but not exactly. So when all was said and done Joe's official diagnosis was "Stage III Non-Hodgkins Burkitt's-Like Lymphoma." Dare you to say that 5 times fast.
I was very nervous taking Joe back home after that first treatment. We knew that some of the side effects of the chemo included nausea, exhaustion, hair loss and other things, but we didn't know how quickly those things would start. I was worried that if there was really something new wrong with him I wouldn't know because we would just think it was a side effect of the chemo. I was scared. Luckily for me, I didn't really have to worry about it for too long, because within a couple of hours of arriving home we got a call from Dr. Ford's office. They told us they had decided that it would be better if we brought Joe in to LDS hospital for observation over night. I think both Joe and I were relieved. We packed up a few things for our 'overnight' stay and headed over to the hospital. It ended up being the first night of Joe's 3 months in the hospital.
Throughout this whole process I think the various medical staff did a good job of telling us what we needed to know without scaring us by letting us know how bad it really was. I now know that that night was very scary, but at the time I didn't realize it. Apparently the reason we were told to check into the hospital was that they were afraid the chemo they had just given Joe would cause the tumors he had to break apart and go all over his body, releasing all sorts of nasty chemicals in the process. In order to avoid that they brought him in and pumped him FULL of water. The hope was that the additional fluid would help to flush any unwanted chemicals out of his system. During the course of one night his weight went up 20 pounds.
At this point the time line of events gets a little fuzzy for me, so I'll just tell you what I remember, but I'm not sure how far into the 3 months everything falls. They decided that they needed to keep Joe in the hospital. There were a lot of reasons for this including risk of infection, daily chemo treatments, and just generally being in bad shape. During the next 3 months I think they let me take him home for the weekend 2 or 3 times, but we were always back within a couple of days either for more treatment or because he had a fever (indicating possible infection). At some point Joe stopped passing food through his colon so they put him on TPN (fed him through an IV) and he couldn't eat or drink anything by mouth. That was pretty miserable. After a few days of that they decided that it would be better to just give him a colostomy so that he could get back to eating and drinking, but still give his colon a rest.
Side note about the colostomy - When Joe first started to get sick and we thought he might have a disease associated with his digestive tract we knew that a colostomy was a possibility. I remember thinking that would be just about the worst thing in the world. Imagining my husband having to wear a bag on his stomach where his poop came out was horrible. I'm sure most of you would feel the same way. However, I can honestly say that when they finally decided to do it, it was nothing but pure relief. Knowing that he could return to some sort of normal existence was amazing. He would be able to eat AND he would not have to make trips to the bathroom every 15 minutes. There are so many things in this world worse than having poop come out of your side into a bag. Believe me.
After Joe had the colostomy surgery and they brought him back to his room the most amazing nurse, Lian, came by to teach both of us how to take care of it. I should probably mention here that I almost passed out the first time I saw it. Not because it grossed me out, just because it was strange and not at all what I expected. They literally take a piece of your bowel and bring it up to the surface of your abdomen. When it was first done it looked very large (the size of a toddler's fist) but after a couple of weeks it shrank down to the size of a quarter. This really was a relief for Joe. He was able to start eating again...just in time to be sick from all the chemo.
Because Joe's cancer was so extremely aggressive it was treated very aggressively. Instead of having chemo stretched out over several months he got it all crammed into a few weeks. Chemo works because it kills off the fast growing cancer cells in your body. It also kills off other fast growing cells. The side effects of chemo are brutal. We shaved his head pretty early on to avoid having his hair fall out, but even the fuzz that was left would fall out on his pillow. He was very nauseous a lot of the time and food was not a pleasure. He had a particular aversion to the Swiss Steak at the hospital. Even the smell of it made him hurl. To this day I don't think he'll eat Swiss Steak. He lost a TON of weight. I think at the peak of it he was down to around 160 (of course at the same time I was doing nothing but hanging out at the hospital and eating when I was depressed - we got fairly close to the same weight!! Ha ha!). The medication they give you to combat nausea basically makes you sleep all the time. I think that's one of the reasons Joe doesn't remember too much about those 12 weeks. Chemo also kills off a lot of your blood cells. It kills off your white blood cells which leaves you very susceptible to infections of all sorts. They had to monitor Joe all the time and watch him for a fever or any other signs of something worse. It kills off your red blood cells which makes you anemic. Joe had MANY blood transfusions. I don't even remember how many.
One side effect we weren't expecting was the nerve damage to Joe's feet. He lost feeling in his toes and had 'foot drop.' It was really frustrating for him and it was one of the things that lasted the longest. It took probably a year for him to be able to walk regularly again and about 2 years before he could really feel his toes.
A short time into his hospital stay Joe got a PIC line placed. This was a semi-permanent IV that was placed in his arm with a line running straight up to his heart. It was used to inject drugs he needed, but it was also used to draw blood needed for tests several times a day. It was really nice because before he got that they were poking him with a needle all the time. I had to learn to take care of it when we were home which included flushing it with clean solution to keep it clear.
One of the worst treatments for Joe was when they gave him intrathecal chemotherapy. This means that they injected chemo drugs into his spinal canal. This is one of the best ways to disburse the drugs throughout the lymph system. Unfortunately it's also pretty painful and in order to avoid a killer headache Joe had to lie flat on his back for several hours after each treatment. It was very frustrating for him.
Most of the days at the hospital all blur together. In the morning Joe got breakfast that he usually wouldn't eat except for the cold cereal. A CNA came in every 4 hours to take his vitals. As long as they were fine most of the day was spent watching TV. They didn't have the best selection of channels. We watched a lot of Law & Order. Most days I went to work while a family member (mine or Joe's) would come to sit with him. He didn't want to do too much. Reading took too much concentration. If anything sounded good for dinner I would bring something in after work. The hospital didn't mind too much if I brought him food as long as he was eating.
The staff at the hospital was great. The RN's and the CNA's that work on the East Eighth floor at LDS hospital are really special. To be able to deal with all of those patients every day must be very difficult, especially when not all of them get well. There were a few male nurses and CNA's (I particularly remember Tony and John) that really connected with Joe. It was nice for him to have some men around in a job that's heavily dominated by women. The nurses were very good at keeping me informed and at keeping us sane. I will however say that the nurses are overworked and the hospital is understaffed. They always did their best, but sometimes it was very frustrating not to get things as fast as we needed them or to feel like they didn't have time for Joe because he wasn't sick enough. That's the main reason that we rarely left Joe all alone. Most days if I couldn't be there Joe's mom, his grandmother, my mom or one of Joe's aunts would come and sit with him throughout the day. I'm so very appreciative to them because I don't think I could have kept going to work every day if he had been by himself.
On day I remember in particular was a day that reaffirmed the need to have someone there with Joe. Actually I know it was September 26, 2003, because it was my brother, Alex's, birthday. Plans fell through for whoever it was that was supposed to be there and so we figured it would be ok for him to spend one day on his own. I saw him in the morning and then went to work. I spoke to him on the phone mid-morning and he was doing well. He mentioned that he had a low fever, but that was fairly common so I wasn't too worried. They usually gave him Tylenol and managed it pretty well. I called him back at about 4:00 and he wasn't ok any more. He told me he was feeling worse than normal and it was obvious on the phone that he was out of it. I left work immediately and went up to the hospital. By the time I got there he was delirious. He wasn't making any sense and kept going in and out of sleep. I found his nurse and was very distressed to find out that she didn't even know he had a fever. The CNA that had taken his vitals at noon had forgotten to tell his nurse. Of course they jumped into action right away, but by then he was in pretty bad shape. Dr. Ford came in and told me that unless his fever came down quickly he would be moved to the ICU that night. I was VERY scared. I called my mom and she came up and stayed that night. Having her medical knowledge as well as the fact that she was able to comfort me as my mom was SO helpful. Luckily Joe responded to the Tylenol and cold packs and his fever eventually came down.
Another night that stands out was when one of the nurses approached me and asked me when the last time was that Joe had a blessing. I thought it was a strange question coming from someone I barely knew, but I also recognize that sometimes the Lord works through other people. She suggested that he might need another blessing, so I called Alex Robinson, a member of our Bishopric and he called Bishop Stan Fitz and together they came over to the hospital. The blessing they gave Joe that night was amazing. In the blessing they told Joe that his work on the earth was not done. They said that he would have the opportunity to raise a family and do all the things he wanted to do in this life. Hearing that blessing meant so much to me and gave me a huge boost of hope and faith to go on. I am so thankful that we had the priesthood and our faith to help us through this whole ordeal.
It's lucky for us that at the time this all happened we were living in my grandparent's home. We had relatively low bills and the fact that Joe was out of work for several months was ok. I don't think I mentioned that he actually worked at LDS hospital where he was admitted. He worked in the warehouse there and his co-workers were great. They would come up on breaks to visit and always made sure to check in on him from time to time. They always made it clear that Joe would have his job back as soon as he was ready and when he finally did go back they moved him to a desk job to accommodate his lack of energy. We were also really lucky that we had good health insurance. Once we had paid our out-of-pocket maximum for the year I never got another bill. I got HUGE statements in the mail showing that the hospital was billing our insurance for hundreds of thousands of dollars, but we never had to pay another dime. I fully recognize that many people in our country are not that lucky.
It seemed that almost as quickly as the whole thing started, it was over. One day in early October they said it was time to go home. Joe's intensive treatment was over and basically there was nothing else they could do at that time. We were so excited to go home, but also scared to see what would happen. Joe still needed a bit of care so we had home health nurses that came in for a while. He still had his PIC line so I got to take care of that. He also still had the colostomy so he got the joy of living with that for a while longer. Joe was still really weak so he spent most of his time watching the food network and playing nintendo.
After a couple of weeks Joe was scheduled to go in for testing to find out if the cancer was gone. He went through an extensive PET scan along with lots of blood tests. We were very apprehensive about the results, but when they came back he was 100% clear of cancer cells. It was such an amazing relief and made the recovery ahead of him look like cake. Within a few more weeks he was able to return to the hospital to have his colostomy taken down. That was a relief also. Eventually he was able to get back to work and we started to resume life as normal.
Of course after going through something like that you never really get back to normal. Having looked death in the face changed both of us. It brought us closer together and helped us get our priorities straight. Anything that wasn't going to kill us all of a sudden didn't seem that bad. We learned how to rely on other people and on the Lord. Our faith was strengthened time and time again.
Because Joe’s cancer was so aggressive if it was going to come back it would have done so quickly. They doctors continued to monitor him closely for several months and he had CT scans every 3 moths at first, then every 6. Now that it’s been 5 years the chances of him getting cancer from the CT scan are greater than those of his lymphoma coming back. He is officially cancer free.
The true happy ending to the story came about 14 months later when I got a very unexpected positive on a home pregnancy test. I mentioned before that chemo kills the fast growing cells in your body, one of the results of that is that it usually leaves patients infertile. Joe and I had talked about that with Dr. Ford who had told us never to say never. We had decided not to worry about it for a couple of years and that once Joe was out of school we would look into our options. Turns out we didn't have to wait that long. Brad was born almost exactly 2 years after Joe finished treatment and Lucy was born 2 1/2 years after that. Both of our babies are miracles.
Looking back at that time 5 years ago has been very emotional for me - a lot more emotional than I thought it would be. I can't imagine what my life would be like if things had turned out differently. I can't imagine a single day of my life without Joe and our kids. I thank my Heavenly Father all the time for our little family. I'm so grateful he gave us the opportunity to share this life together and I look forward to an eternity to come.
Wow, I had no idea this would be so long. If anyone has read this entire entry you are either a saint or a glutton for punishment. Either way I appreciate it. Feel to share your thoughts and feelings since obviously I have done both.
Here is the one and only digital picture I have on hand from that time – Joe toward the beginning of his hospital stay when we shaved his head. He actually got a lot skinnier than that.
And this is now. Sorry Brad looks like he’s about to cry. I took like 10 shots and this was the best one.
I actually let Brad pick out Lucy's costume at Wal-Mart. He said he picked the cow because "She likes milk!" Can't argue with that reasoning.
Sorry there are more pictures of Lucy, but she holds still and Brad does not. We actually didn't take any pictures of Joe & me (we went as Joe & Jane Six-Pack) but some friends did. If they post some pics I'll come back and share the link.
