Monday, July 28, 2014

Week 1 of Chemo

With all the time I have spent sitting at the hospital this week I thought I wouldn't have any trouble with up dating Randy's progress on the blog. This first week has been so overwhelming that I just haven't been able to focus on anything. I can't quite explain it but my brain just feels like it's in a huge fog these days. So I will do my best to do a recap on our first week experiencing Chemotherapy.

First of all, I'm not gonna lie, this week has been rough.  I think it has mostly been the exhaustion and realization of the whole thing that has made this week just awful.  We went in Monday morning, after only getting 5-6 hrs. of sleep (possibly less) the night before. I honestly think Randy may have only gotten 3-4 hrs. of sleep. He has a slight cold and every night for the last few weeks his cough has kept him up at night. Not a good condition to start Chemo but what other choice do you have when cancer is spreading through your body?

Despite the lack of sleep, Randy went into this thing so positive. Our good friend, Gigi Neslen, had started a donation fund on and in just 2-3 days, friends, family and even strangers had donated thousands of dollars to help us pay for our medical bills as we go through this journey. I have already said this so many times on facebook, but we are soooo grateful for everyone who has helped, whether it has been money, meals, taking care of our yard, watching kids, or even just offering prayers and encouragement for our family, it has been such a blessing for our family. Going into chemo on monday, we just knew that we had tons of support and friends back at home who were cheering Randy on and praying for a quick recovery from all of this.

Although we were extremely tired, we sat in the infusion center on Monday and so much information was told to us by nurses, doctors, social workers, and pharmacists. It kind of made the day go by fast and the information they had was so helpful! On Randy's long weeks of Chemo, he has to have blood work done on the first day to make sure his levels are in a healthy range to do chemo. This first week they were, but going forward, as the chemo starts to attack his body they have to really keep a close eye on his blood count and platelet levels. If they get too low then it's too dangerous to do Chemo. Let's hope his levels stay in good range all throughout so we can get this over with!!!

Back to his schedule, while they wait for his blood tests to come back, they start his IV and begin pumping tons of fluids in his body. The first hour of treatment everyday is just a saline drip so his kidneys can filter properly with all the drugs they will pump into him. After the saline, they start him on some nausea meds through his IV. I'm not sure how long this takes, it's a little different each day. After the fluids and nausea meds, they begin the chemo drugs (if his blood tests have come back good). He has three different chemo drugs, but they mostly they only give him two on his long week, and on Tuesday's they give him the third drug. After the chemo goes through his IV, they then have to give him another hour, sometimes 2 hrs. of more saline. It's quite the process!!! By the time we walked out of the hospital on the first day, we were practically walking zombies. Randy did okay the first day, he was just extremely tired. He has a hard time each day adjusting to the sun light when we drive back to my parents house. That seems to be when he has the hardest time. He usually only complains of a headache and that he feels light headed. Luckily he was able to have a good nap that afternoon! After his nap he was feeling so much better. So the week pretty much progressed the same way each day, minus the blood tests that they only do on day 1. We usually start at 7 am and he gets done between noon and 2 pm, depending on the day. Some days he has been able to work on his laptop, some days he has been so exhausted that he tries to close his eyes and rest, although there are so many noises in the infusion room it's a wonder anyone can sleep there.

Let me explain a little bit about the infusion center. They have it set up in what they call pods. There are 8 pods that run along large windows that overlook the valley. The view is absolutely amazing!!!! At the back of each pod is a nurses station. In each pod, there are 4 stations, for a total of 24 infusion stations. Each station has a recliner where the person getting treatments sits, and a chair next to the recliner (for the person accompanying the patient) that is more comfortable than a regular dr. office chair, but not near as comfortable as a recliner. Each station also has a tv and dvd player and magazines to keep the patient entertained. The four stations in each pod are open so you can visit with the person in the next station if you want to, but far enough apart  that it provides a tiny bit of privacy. Well, actually it's not very private at all. You can practically hear what everyone is saying unless they are talking quietly with one another. However, each pod is separated with half walls so it can be somewhat private. I imagine they try to keep it somewhat private because I've noticed that they spread the patients out between all 8 pods. They aren't all full at one time and people come and go at different times all day. Some people are only there for 1-3 hrs. and then they are gone and someone else will come in their place. Here is a little picture that you can kind of see what a pod looks like. There is a section to Randy's right and also immediately behind him, and the one in the corner of the picture you can see that makes up one pod. This pod we were in that day was pod 8 and it is all the way in the back of the infusion center. The view in this pod in not fantastic, it is just the side of the mountain instead of the view of the valley. But it feels a little more private in the corner so I don't mind not having a great view.

Some days we have felt like talking to the other  patients, other days we have not. It is so interesting, and sad at the same time to talk to the cancer patients. Everyone has a completely different type of cancer and a completely different treatment regimen. One guy that I started to notice there after a few days, has to go everyday for 65 days. Another gal only goes on Monday for two weeks, but then has the third monday off, then starts over again. Some people go 1 day a week, some go 3. It's all different!!! And I'm finding that they all are so positive and happy, no matter what regimen they have. And none of them seem to complain one bit! It truly is an amazing place to be! The strength I find in the cancer patients is just overwhelming!

The fifth day of treatment this week was the hardest for both Randy and me. I was so exhausted and emotionally drained that I found it hard to sit there all day. Randy was so exhausted from the week that he basically slept the whole time or watched tv. He had so many fluids pumped into him throughout the week that his body was swollen and he said he had gained 10 lbs. just in the few days!! I know he didn't gain the weight from eating food because his appetite had decreased significantly as result of the chemo. I'd say the most side effects he had this week was loss of appetite and exhaustion. When we talked to the nurse on Friday, she said that by the middle of next week he should expect to see the side effects really start to kick in. Yikes!!!

The hardest thing so far in this journey with cancer has been not knowing what to expect. The doctors and nurses give you this long list of side effects of the drugs and it makes you so scared, but what other choice is there? None! So we just listen and nod our heads and hope that since Randy is young and strong that the drugs won't effect him too much. After going through the first week, I'd say he has done amazing!!! But then the nurse says that things will probably get worse next week and I start to get nervous. Will I have the strength to help him through this? Will I have the energy? Will I have the knowledge to help him with what he needs? It scares me to death!

Last night we had our first major experience with side effects. Randy decided to sleep in the guest bed so he wouldn't keep me up coughing. I was deep in sleep when I heard load moans, almost yelling coming from the bathroom in the hall! I jumped out of bed just terrified, not knowing what I would find. Randy was in the bathroom just puking his guts out! Sorry, it's a little graphic but somehow I have a feeling this is just the beginning. He said he has never thrown up so much in his life! I'm just glad he made it to the bathroom, because after talking to him in the morning, it sounds like it just came on suddenly and he almost didn't make it! Wouldn't have wanted to clean up that mess!! Not to mention they told us that large amounts of his body fluids are toxic. Yikes!!! Really, really  glad he made it to the toilet!!! But after that he was able to take some meds to help with nausea and he slept the rest of the night in peace. Phew!!! Survived week 1 with fairly little trouble.

Week 2 begins. We sent the kids off on vacation with my family so hopefully I can clear my head a bit and get some things done around the house that have been neglected for weeks. Probably won't happen, but I can dream right? Anyway, Randy has only 1 treatment this week and it is short 1-2 hrs. Yeah!!!!

I'm not sure what to expect for this week but I'm praying with all my heart that Randy and I will be strong and that his body can fight this war that is going on inside his body.

Friday, July 18, 2014

Cancer Sucks!!

I haven't posted anything on this blog for seriously two years. Life just kind of got crazy with baby #3 and I was finding less and less time for uploading pictures. Originally I started this blog when we lived very far away from our family and it was my way of letting them see pictures of our family and be part of our lives despite the distance apart. Once we moved closer to them and we saw them more regularly than once or twice a year, I felt like my blog wasn't as important. Recently our life has turned upside down and I have decided that this blog can be very useful as not only a journal over the next phase of our life, but also as a way to communicate with others who are interested in Randy's progress over the next little while. I'm finding myself explaining the same things over and over to different people and by the end of the day I look back and realize I'm exhausted from talking on the phone for countless hours. As much as I love talking to friends and loved ones, the topic of conversation is not that pleasant these days. I'm going to try and keep regular updates on the blog of how Randy is doing so if you feel like calling, we can talk about more enjoyable topics!!!

If you are totally confused and not knowing what the heck I'm talking about, let me take a few minutes to explain. My husband has cancer. CANCER!!!! Just hearing that word makes me want to scream! Here is our story, sorry if it's a little TMI, but it is what it is.

So around the end of April my husband noticed that his right testicle was enlarged and painful. He told me he thought he had another hernia (he has had multiple hernias but it was years before we were married). We knew a trip to the doctor was inevitable but at this point it wasn't too painful and so he put it off because he was a pretty busy guy. I swear he thinks he is superman and nothing will ever happen to him.

Well, a few weeks went by and all of a sudden it was causing him so much pain he could barely walk. He decided to just skip the family doctor and go right to the surgeon. The visit with the surgeon left us with three or four possible solutions. The doctor didn't think it was another hernia but instead he thought it to be either a torsion (a twisted testicle), a tumor, or a hydrocele (sack of fluid). He scheduled Randy for emergency exploratory surgery the next day to find out what was wrong and fix the problem. Looking back now and knowing what I know now, I'm so wishing they would have just waited a day or two and did some tests first!! Like maybe some blood tests or even an ultrasound!!!! I don't know if we would have had a different outcome than the one we have, but it causes me to wonder.

After surgery, the Dr. told us that is was a torsion and that they removed the dead testicle. As much as he tried to prepare himself, it was a tough blow to Randy's ego. At least he still has the other one right? What a good sport he is about all of this. The recovery period wasn't too long and he was up and going to work within four days. We were so glad to have it all out of the way and I was finally get back to my regular routine. A week after surgery we got a call from the doctor. The lab results came back and it looks like it was a tumor in the testicle and it was cancerous.

What. The. Heck????

So many questions going through my head at this point. I thought the Doctor said it was a torsion? How does he get that so wrong??? Did he just assume it twisted because it was dead, or did it twist along with having a tumor? Looking back now, I wish I would've asked all these questions when my husband went back to see the dr. after we found out the news, but I was so sick and out of it that I was probably lucky to even get out of bed that day.  I forgot to mention that while all this is going on, I'm sick as a dog. I got the stomach flu just a day or two before his surgery. And I had a constant head cold, flu, and congestion practically all year!!! So of course it gets worse when our life suddenly turns upside down and I'm stressed to the max!!!

They run some blood tests and have a CT scan done and the Surgeon tells us that the cancer has spread to his blood, tissue around the groin area and possibly the lungs!!! Then he tells us that a specialist in Provo will be contacting us for more follow up. Keep in mind, we live in rural Utah in the middle of the state. The closest big city is Provo in one direction, or St. George in the other direction. And both are about 2 - 2 1/2 hrs. away. By this time we are freaking out.

You hear the word Cancer and your whole world falls out from beneath your feet. We know nothing about cancer. Everything runs through our head, from chemo, to radiation, to surgery, to extremely high medical bills, to sickness and to possible death. We are scared. We don't know what to think. So we try not to think. But we can't stop thinking. CANCER!!! AHHHHH!!!

The Longest day of my life waiting for that call from the specialist, and that's just to schedule an appointment!!! They finally call, and can't get us in for 2 weeks! TWO WEEKS!!! I can't live like this for 2 weeks!!!!! I can't live not knowing for 2 hrs!!! Luckily for us, we have AMAZING family and friends who got on the phone ASAP and got us in at Huntsman Cancer Institute for only 1 week away. I'm not happy knowing that I have to wait a week but I'll take 1 week over 2!!!

How I functioned this week of waiting I'll never know. We had some amazing neighbors who helped bring dinner, tilled our garden, and offered to take the kids and were basically there for me whenever I needed to vent. So grateful for our wonderful neighbors!!!

We finally went to the specialist and we left that first appointment actually feeling total relief! Okay, not total relief, but we slept a heck of a lot easier that night. The Oncologist explained to us that nothing alarming showed up on the CT scan and that the cancer markers (not cancer) in the blood were elevated, but that is typical since they just removed the cancerous tumor and it takes about 6 weeks for those markers to return to normal levels. Huge sigh of relief!!!! It's not cancer in the blood, it's not cancer in the's cancer markers that are elevated. We know we aren't out of the park yet, but we have huge hope that all was taken care of with the surgery!!!! The oncologist says it's Testicular cancer stage 1, which means we wait and watch.

After a couple follow up appointments and blood work, things start to look really good. His levels were going down and by the end of June the cancer markers had returned to normal. Okay now we are singing the Hallelujah Chorus!!! Life couldn't be bettter! On a plus side, I finally feel like my cold is letting up and that I actually might get to go a few days without taking cold medicine around the clock for the first time in months!!!We have about three weeks of bliss. And by bliss I mean cancer free euphoria that can only be described if you've ever been in a similar situation. You just have to have this experience to understand. It is amazing to know you don't have to do chemo or radiation. I finally felt like we were going to have an okay summer after all.

Then came the final follow up appointment after his levels normalized. It was on a Friday after I had been visiting my family in SLC for a few days while Randy was attending a conference for work. Randy had his blood drawn one last time and the plan was to go back in three months to have another CT scan and blood work just to make sure all was well. All went well at the appt. and they scheduled him for three months out as a routine check. Then Monday came, the day we got the blood test results from the previous friday. I had completely forgotten about it because our last test three weeks prior was normal, so why wouldn't they be normal again? I came home from working a few hours knowing that I had a huge day a head of me of unpacking and laundry from being gone. Randy was home and I remember thinking it was a weird time of day for him to be home. I went and talked to him and he told me the bad news. His cancer markers had gone up, but only from a 7 to an 11 (0-9 is the normal range). But still, they went up!!! The oncologist wants to see us first thing the next morning. Here we go again!!! All I can think is that maybe there was some kind of mistake. How could they go up?

I quickly scramble to find a place for my kids and we pack up again and drive back up north to where we just were less than 24 hrs. before. So exhausting!!!

We meet with the dr. first thing in the morning and the first thing he says is that he is concerned with the procedure that Randy had in Richfield to remove the testicle. Apparently it wasn't the preferred method to go into the scrotum to remove the testicle when cancer is involved. With the preferred method, they can go in above and remove the testicle as well as the tube and vessels to prevent the cancer from spreading up to the lymph nodes. Not sure if this is why his cancer has spread, but it does cause me to wonder. Either way, his levels are elevated indicating that the cancer has spread and chemo treatment is necessary.

How in the course of 24 hours has my life gone from what we thought to be cancer free bliss to chemo!!!! I just laugh because I don't know what else to do or what to think or even feel. The good news is, they tell us that if you have to have cancer, this is the one to have. It's 95% curable. But that doesn't make me feel any less scared. Okay, maybe a little less scared.

The next two days are full of tests after tests after dr. visits. I'm so exhausted that I almost fall asleep sitting up waiting for the last dr. appointment. My hip is aching from sitting in waiting room seats. Couldn't they have recliners in the waiting room??? It turns out after they do more testing that the cancer has in fact spread to his lymph nodes. Now we are in stage 2a testicular cancer. Chemo is scheduled for Monday. We have four days to prepare.

His treatment will be in three cycles, each cycle taking about 3 weeks.  The first week he has to go in for five days with 7 hr. treatments each day. The second week is just one day, 1 hr. treatment. The third week is 1 day, 1 hr. treatment. Then the cylce repeats over 2 more times. So it's about 9 weeks of treatment that we have to look forward to. After the treatment they will do more scans and blood work and if the cancer is still there they will go in and remove the lymph nodes.

Sooooo not looking forward to my life the next 3 months. I'm trying to take things one day at a time but honestly it's so overwhelming. I'm trying to stay positive as much as I can and think that things could always be worse so I need to be grateful for what i do have. We have already had so many neighbors, and friends and family help out in so many different areas. It makes me happy to know we have such a great support system.

Randy is handling everything so great and I honestly don't think he has complained once this whole journey so far. He is such an amazing guy and I know he will be a fighter!

I'll try to update the blog as often as I can. I know so many people have offered to help and honestly it's such a relief when they do because I don't know how I'll make it through this without our support system. Right now it's hard to know what kind of help we will need because it's hard to know how he will react to treatments. And it's summer and the kids are home and don't have to be to school. But I just know as the weeks go on that things will get more and more difficult. I'm asking right now for prayers for our family and for Randy as he begins these chemo treatments. Thanks all!