Out of the woods

Obviously time escaped me as my posting stopped mid-chemo. I will try to pick up where I left off by saying that the third round of chemo was tough. Casey eventually lost all of his hair (but managed to hang onto his eyebrows) and became exhausted. After 2 rounds of chemo, the third was the final straw. He was constantly tired. Never getting super sick, but just exhausted. He did manage to maintain the appetite he'd established during the 2nd round, but it wasn't enough to keep him from losing weight.
Overall, once it was all over Casey began tor ecover very quick. He finished his last treatment right before Christmas, and was able to get on a plane (the same day as his last treatment) and fly home to Colorado for the Holidays. Impressive! We spent a lot of time relaxing, and doing nothing. It was so great to have him home and to have all of us together.
Today, Casey is doing great! He is taking some summer classes to try to get caught up on what he missed last year. He is now dating Amy and they are very happy! Most importantly, his bloodwork continues to come back normal. He works out regularly and re-gained the weight and muscle mass he lost throughout chemo.
I am so thankful for the wonderful doctors, nurses and hospital staff we worked with throughout this entire ordeal. The frustration you feel during the treatment pales in comparison to the elation you feel when it's all over!
If you happen to be someone dealing with TC, or any kind of cancer for that matter, hang in there. It is a rough road, it is a scary road and most of all it's an emotional road. But there is a light at the end of the tunnel. You just have to keep moving!!

Week 3- Cycle 1

Well, we are approaching the 2nd round of chemo- it starts Tuesday of next week. Casey has really run the gamut of side effects from the first round but has not yet thrown up! He has felt randomly nauseous, and his first nausea pill really didn't help at all so he switched to Emend and has had some success with that. He has a prescription for Zofran as well but he hasn't had to use any anti-nausea meds this week, which is awesome because even these have side effects including but not limited to a dizzy/really drunk feeling. Seems a bit counter intuitive to take an anti-nausea pill that makes you feel drunk and dizzy but, the choices are slim.

Last week (the week immediately following chemo) was really hard. He was exhausted, he had little to no appetite (more on this to follow) and he felt awful most of every day. Sitting around the house was getting to him and while he wanted to get up and go on a short walk outside, he just didn't have the energy. On top of the chemo side effects, his doctor gave him the Neulasta shot last week. This is a shot that helps the white blood cell count (your immune system) from falling too low. Of course, this also has side effects; flu like feelings of chills and aches especially in the bones. Unfortunately, Casey suffered some severe aches and felt awful about 24 hours after the shot. The nurses told him to take Tylenol and he said it helped a little but it was "some of the worst pain he's ever felt." It was, however, gone by the next day.

Now, onto food. Last week Casey could only stomach a few different meals. He ate bagels, cheese quesadilla's, turkey sandwiches, and that's about it. Asian sounds awful, dairy is unappetizing, and although every one of his friends brought him sweets and chocolate desserts after about the 3rd one he was sick of them. This week he has been able to stomach more; fajitas, turkey wraps, oatmeal, banana bread, etc. One thing he said he will do differently this round is to try to eat more healthful and nutritious meals. It's a double edged sword when you know what you should be eating but none of it sounds good! I made him a broccoli and chicken casserole that he could refrigerate and warm up as he needs, and a potato and cheese with ham casserole. He thought both of them sounded good and they were both full of good fats and calories for him. You can click on the words above and use the recipes it you'd like- I thought they were both very yummy!

I went to eat lunch with Casey yesterday and he showed me that he has started to loose his hair. We were hoping that somehow he wouldn't have to worry about his hair falling out but, like I said to him, I guess that just means the chemo is working! He opted to shave his head today and while he looks very different, he had a shaved head for most of High School, so it's nothing we've never seen before! I think he looks great! :)

As we start the 2nd round I will do my best to stay updated! We are 1/3 of the way through this...2/3 here we come!!!

Chemo: Days 1-4 Cycle 1

It is Friday night, tomorrow is Halloween and we are 4 days into Casey's first 5 day chemo cycle. I have taken notes throughout the past few days and it's amazing how almost every time we have gone in for a treatment something is different. You would think this would be pretty regimented and routine but it seems every nurse does stuff differently. It's actually pretty annoying. Sometimes they wear gowns, sometimes they don't. Sometimes they are very attentive and sometimes you see them only when your IV alarm is going off; either because the infusion is done or because there is "air in the line"- which means that you have to very scientifically flick the IV line so as to move the air bubbles through. Again- annoying!
A few things I want to suggest for those who haven't started chemo yet. Talk to your doctor before you begin about getting a port or a pick line put in first. Casey's arms are poked all over from getting a different IV everyday and he even broke out in a small localized rash due to some of the medical tape used to secure the IV. Getting a port ahead of time would enable the nurses to simply stick the IV into the port instead of having to re-shoot a vein every visit! No one mentioned this to us before we started so now Casey will be getting a port next week- the week after his chemo. Perfect.
Also, talk to your doctor about getting the seasonal flu shot and, if possible, the H1N1 shot. No one mentioned this to us and although the nurses say the seasonal flu shot is still OK to get the H1N1 is contraindicated while on chemo. It's just some info that would have been nice to know PRIOR to the 1st treatment.
Anyway, Casey is feeling OK at this point. He has had some mild nausea and his appetite is definitely waning. He has eaten things like bagels, turkey sandwiches and bananas but really nothing has sounded all that appetizing. He's been drinking tons of water (which is SO important) but food has been kind of a struggle. He describes his overall feeling as "meh"- kind of like how you feel right before you know you're coming down with the flu.
One last thing that I will say for tonight; make sure you or whoever is coming with you to your treatments is well versed in your meds and what your oncologist has ordered. Obviously they can go over them with you but make it a priority to learn the name of each med, the possible side effects and what is not normal. A few times we have needed to question what was being dosed as it seemed the nurses were not very sure what exactly the previous nurse had done. This is not to say we've had bad nurses as they have all been very sweet and helpful, but, you can pick out the best ones from the mediocre ones pretty quick! So far we have only been scheduled for treatments at 4:00PM so we have been at the hospital pretty late and I have to say that I think they put the newer nurses on at night because it's the crappy shift, and because it's a lot slower so they can take their time and learn. Great for them, not great for you. Especially when all you want to do is go home!
We were originally told that each chemo session would take about 2 hours. WRONG. We have not been at a session for shorter then 6 hours so far. There is always a hydration infusion to make sure you're getting plenty of liquids, then they do anti-emetics (nausea meds), then comes Etoposide, the Cisplatin (Etoposide and Cisplatin have been taking about 2 hours each) and then once a week they are doing Bleomycin (about 15-20 minutes) and then another bag of fluids! It's LONG and even though there is a TV, it's boring. I downloaded some trivia and word search games on my ipod touch which has helped pass the time but wow....it's a long time to sit in a room. Hell I'm not even the one getting pumped full of chemo!
I think that is all for now. I need to go to bed. I am taking my daughter to the chemo room tomorrow in her Halloween costume, she's going to be a monkey! Maybe that will cheer up some of the patients. I am also bringing chocolate chip cookie dough cupcakes. If the monkey doesn't work the cupcakes will!! Gotta stay positive! :)

Curveball

Casey scheduled another blood draw for a few days later and followed that shortly with a chest CT. Over the next few days we continued to debate amongst each other about what treatment plan seemed the most logical, and reasonable considering Casey living away from my parents with only myself to really care for him if he did choose the chemo. Should he go home to Colorado to receive treatment, where my Mom could take good care of him? So many things to consider.
Casey got a call last Wednesday from the oncologist regarding the tumor markers in his last blood draw. They are climbing higher. Post surgery his AFP was 58, it is now close to 100. Basically meaning that the cancer is still in him somewhere, and it's growing.
Damn it! I mean....really? I was so not prepared to hear that. I had pretty much prepared myself for the fact that chemotherapy was going to happen but I most certainly did not expect that his tumor markers would rise. Remain the same, maybe even fall a little I thought- but get higher? I just wanted to scream. So- the decision was made. The doctor ordered Casey on not 2, but 3 cycles of chemotherapy, each cycle at 3 weeks. 9 weeks total, which makes his last week of chemo the week of Christmas. Super.
And now I am up to date. Case visited the sperm bank Friday and he will go again tomorrow. The sperm bank will bank his sperm after a down payment and then a yearly payment every year after. At 24 he's not even sure that he wants kids, but, you have to think ahead! The oncologist thinks chemo could start as soon as Tuesday 10/27. My Mom is flying in tomorrow night so she can be here for his first week- which is supposed to be the hardest of each cycle. The first week is the Cisplatin and it's everyday for 2 hours a day. These drugs are administered through an IV drip so Casey will have to go to the hospitals cancer center for treatment.
I have been feeling so helpless so I have been researching how to maintain a healthy diet while taking chemo. It's important to eat well, and provide your immune system with the tools to stay as strong as it can since chemo lowers it's ability to fight off disease.
The coming weeks will be trying, and hard and scary and concerning no doubt. I plan to blog the entire way through though so that anyone who reads this will have an idea of what they might be able to expect. Who knows, maybe all of the anti-nausea drugs they have available these days will keep Casey from getting super sick. Maybe he will just get really tired and some of the worst side effects will pass him by. God I hope so.

Treatment

Treatment options are tricky. Our oncologist gave us a few to "choose" from even though, in the end, he pretty much did the choosing! Since Casey's tumors were considered to be stage 1S (s is equivalent to b, which is one level worse then if he had stage 1a) he could opt for 2 cycles of BEP chemotherapy. BEP is a combination of Bleomycin, Etoposide and Cisplatin, three pretty common chemo drugs used for more then just TC. Or, if the doctor liked the looks of his next blood test he could opt for active surveillance. Surveillance is not just "watching and waiting." They take weekly blood draws to watch your tumor markers, they schedule regular CT scans to monitor any possible re-growth or spread. The oncologist explained that 30% of those who choose active surveillance have a recurrence at sometime in their life. 70% do not- not terrible odds but I don't know that I would want to wake up every day wondering "is today the day they will find out it has come back? Will I officially join the 30% club?" If you were to have a recurrence you would have to have chemo done anyway, so it makes sense to just do the cycles now, get them over with and (hopefully) move on with your life and leave cancer in the past. Easy enough, right? Almost. Chemotherapy has a lot of negative side effects including sterility. Bleomycin is a very potent drug that can wreak havoc on your kidneys and lungs. Vomiting, nausea, hair loss, mouth sores, weight gain, weight loss, dry skin- the list really does go on and on! Plus, for Casey, he had school to consider! He had just started his law school mid-terms. While his school would allow for a medical leave of absence they would not give him credit for the classes he had made it half way through for this semester so he would essentially be starting his 2nd year all over again post chemotherapy! Yuck.
So, we sat at a crossroads. What do you do? What does Casey want to do? We had lots of talking and considering to do and the oncologist wanted Casey to get another blood draw and a chest CT scan (to ensure the cancer did not spread to the lungs). We left his office feeling foggy and even more confused then when we went in. How would we decide which treatment was the best for Casey? Well, we wouldn't have to.

Radical Orchiectomy....huh?!

The morning went pretty smooth. We all met at the hospital and spent time with Casey before they wheeled him back to surgery. In total, I believe the surgery was about 2 hours with an hour or so post surgery. Casey was home by late afternoon and watching "The Office" reruns by dinner! He had plenty of helpers which was both great, and overwhelming. In hindsight, doing "shifts" may have been more practical, but in the moment everyone just wanted to be with him. He had very little pain and was able to get up and down pretty easy. He took pain pills for the first 2 days but changed to extra strength Tylenol on day 3. The worst part of the first 2 days for him was trying to poop. Bowel movements were painful due to the pressure on the incision. It didn't help that the pain meds made him constipated. On a side note, constipation is a common side effect of pain meds so ask your doc about this if you have any questions. My Dad picked up an over the counter stool softener and that seemed to help a little bit. Eventually it happened and the world kept spinning, but for Casey time was moving very slow until then!
One thing Casey was diligent about was ice. He did a great job keeping ice packs on the incision and his groin area and I do think that helped a ton in reducing swelling, and his overall recovery time.
The next 3-5 days were the worst. Not because Casey was in pain, he was actually feeling good. They were agonizing because all we could do was wait. Waiting for the doctor to call with news on what the stage of the cancer was. Waiting for news about what type of cancer we were dealing with. Waiting for news about what the next step would be as far as treatment, Casey's school, his future, his ability to have children- everything! All we could do was wait, and we were truly at the mercy of the labs, and the Urologist. I will say this; if you are not your own advocate, and you do not stay on top of the doctor and his staff, there is a good chance your case will get pushed to the side. Not forgotten about, but bumped down the importance ladder. Since my brother is over 18 my parents had no rights to his personal medical info. They could not call the doctor and ask questions, they could not call and badger the receptionist to check on results. This was hard. If possible, speak to the nurses and/or front office staff before you leave the surgery. Find out what their typical follow up protocol is. Do they have one designated person that checks on results and reports to the doctor? Does the doctor make important calls like these at the end of the week, or is there a specific day you can expect to hear from him? In our case, the doctor said he would call in a few days and by a few he meant 4. Yeah. He called us on Friday at 4:30- right before he left for the weekend. Nice.
From what he could tell, Casey had stage 1 testicular cancer. His tumor was 90% seminoma (the better kind to have) and 10% yolk sac. Our Oncologist has since explained to us that even though the tumor is largely seminoma, they treat all tumors that have any type of non-seminoma the way they would if the whole thing was non-seminoma. If that didn't make sense, all I am saying is that even though Casey's tumor was mostly seminoma, it would be treated as if it was 100% non-seminoma due to the 10% yolk sac. If you have not already looked at the different types of TC, take some time and read through the definitions. I found great info on the TCRC page, and also the American Cancer Society website. Both links can be found above, in the left column.
Casey was really hoping this phone call would explain exactly what his treatment would entail and what he should prepare for in the coming weeks. He was disappointed to find out he would have to wait 2 weeks to get his blood drawn, at which point the Oncologist we were being referred to would meet with Casey to go over the findings. The idea behind waiting 2 weeks is that hopefully your AFP (Alpha Fetoprotein) and HCG levels have dropped drastically. These two "tumor markers" are a convenient way to determine whether or not all of the cancer is gone. A normal AFP level is 0-8, Casey's was 657 before surgery. After his radical orchiectomy (testicle removal) his number had dropped to 58. This is great, but not low enough. The oncologist was vaguely hesitant about this and asked Casey to get another blood draw in a few days so he could see if the numbers were continuing to fall. Before I get to where we are today, I should go over Casey's treatment options as they were presented to us....in the next post!

The search is on!

We began looking for a Urologist right away. Finding "the right" doctor in such a huge area and under so much stress was the hardest part. How do you know where to start? I didn't know any Urologists personally, and any connections my parents had were back in Colorado. I started by talking to the only person I could think of- my Gynecologist! Yep, my OBGYN gave me a few different names and I began doing my research. There are very few websites out there who give you a doctor's history for free. You can pay for specialized reports but I wasn't willing to do that so I went to California's medical board website (http://www.medbd.ca.gov/) and checked out when and where these doctors graduated, whether or not they had ever been suspended for questionable practices, whether or not they had any special area of expertise etc. This website was not great but it gave me more then I had before!
Casey called me the next day and told me that everyone he had called was booked until the middle of October (obviously WAY too far away!) but he was able to get an appointment with a female urologist for a few days from now. He gave me her name and I went to my buddy, Google. 10 minutes later I called Casey back and said "not to be pushy, and I'm not trying to step on your toes but I don't think you should see this lady." "Why?" he asks. "Well, from what her FACEBOOK page says, she just passed her boards 3 weeks ago and this is her first month dealing with patients." Now, I am all for giving everyone a chance and I know we all have to start somewhere but this was not the time. We wanted Casey to see someone with more then 3 weeks of experience under his belt, and with more then a month of patient contact. Yikes. Casey agreed and I was able to get him an appointment with a highly recommended Urologist in the area. We had to wait a few (agonizing) days but finally, Monday morning rolled around. My parents and little brother all flew out from Colorado to be with Casey for the coming week.
We all walked into the appointment and the receptionist looked at us like, are you serious? Myself and my daughter, my parents, my little brother, and Casey's friend Amy all crowded into the tiny waiting area. Casey went back first to speak with the doctor and then they brought my parents back. I can honestly say that I have never been so close to heaving my breakfast all over as I was for those 20 minutes. 20 minutes felt like hours and every time the door would open our heads would whip around, hoping it was some kind of news. Then it finally was. Casey followed my parents out, we stepped out of the waiting area and into the elevator bay- my dad started crying. My dad NEVER cries, so I knew it was bad. "It's cancer. They are removing the testicle tomorrow morning. Doc thinks Casey's lymph nodes look normal (from the CT scan taken earlier) but we can't really be sure of anything else until we get the testicle out." Casey was stoic. Very quiet and that scared me. My little brother was very emotional. Casey is his hero and the thought of any of this being a reality was a lot for him to shoulder. We went to a cafe and just kind of sat there. We were all in shock and a bit numb, but we had to discuss what would happen in the following days. I felt so hopelessly helpless. I would've done anything to make this all just go away, and little did I know at the time, this was just the beginning!