My friend Nancy over at Mommy Lesson Plans decided to start a monthly Blog Hop for a Cause. She (bravely) shaved her head for this cause, and if you scroll down to the Blog Hop at the bottom of my post you’ll see many other posts from other bloggers sharing different stories, organizations, etc.
I, obviously, have a story to share as well. If you’re new to my site from the Blog Hop I’ll give the brief introduction that my husband had cancer – twice. In fact, we just celebrated some great news at his 2 year appointment! My great grandparents had cancer, my aunt had cancer, and my dad just recently finished his treatment for cancer. I guess I’m not a stranger to cancer, though I can say it is definitely a different experience for everyone. There are so many different types of cancer, types of treatments, holistic options, and different experiences from different ends. Whether it’s a family member or a friend, chances are we all know somebody that has had this awful disease. In fact, statistics even say this is probable. It’s sad really. In fact, we made a shift towards better health in general (the beginning of our eco-friendly journey) because of it in hopes of a better future for our children and so on. I’ve never really shared the “full story” on here, and what a better time than this? Please forgive me if this is long because, well, many things I can shorten, but particularly emotional stories are harder for me to “sum up.”
In November of 2009 my husband went to the doctor due to suspicion of a “problem.” He was quickly sent to ultrasound who in turn quickly sent him straight over to Walter Reed Army Medical Center and told he would have to have surgery RIGHT AWAY. In the meantime, I’m getting most of this through text message due to his being in the hospital buildings with hardly any reception. Our suspicion was confirmed – he had tumors on his testicle. 3 in fact. They came out of nowhere! I started doing research because that’s how I am. Could this be cancer? I mean really? He’s only 25. (I’m older). What I found out not only surprised me, it made my heart sink. Did you know testicular cancer mostly occurs in young men ages 25-30. I know I didn’t. Did you know a lump on the testicle is most likely cancer – it is rarely anything else? Again, I didn’t (but I had hoped this was an exception!). I also learned that it must be removed because if it biopsied prior to removal and it is cancer it actually has a higher risk of spreading. So part of me was still relieved to know the rush to surgery is expected because that is the protocol regardless. Even if tumor markers come back clear they still have to perform the surgery to truly know. Wow, I had a lot going through my head!
Luckily, I had a wonderful friend who came over to stay with the kids so I could go up to the hospital and be there for his surgery that night. We talked to the doctors and asked A LOT of questions. They confirmed that yes, he is the “prime age” for testicular cancer, and they needed to perform the orchiectomy right away. We did find out his HCG levels were raised and tumor markers were clear. (If you’re a woman who has been pregnant you know that HCG how you know you’re pregnant. If you’re a man – it’s how you know you have testicular cancer!) So, we did know it was cancer. The doctors were actually a little shocked that I was almost half way through the pregnancy with our 3rd child. Many men go infertile a few years before diagnosis! Another thing I didn’t know! That is actually one of the first signs for some men! If that were the case not only was our current pregnancy a blessing, so was our daughter who wasn’t even two at the time! Then it led to the uncomfortable question of if that could be the reason we also lost two babies. The doctor didn’t really want to answer that question, but he did say it was possible. I wasn’t even going to continue on that subject!
Unfortunately, they were unable to perform the surgery that night. It did make me a little bit nervous – partly because now I was afraid it needed to be removed NOW and partly because I was afraid I wouldn’t be able to get a sitter the next day to be there for the surgery. The second fear became real, and I paced the house all day wondering how he was doing, if he was in surgery, in recovery, etc. It was actually Veteran’s Day. While many soldiers and spouses were out enjoying their special discounts, etc. I was definitely NOT enjoying anything that day. I had his Chain of Command calling me and asking, family members asking, etc. I actually hit a breaking point when someone called and just started crying saying how in the world am I supposed to know anything when I am at home with the kids! I did finally get to go up there that evening again after my awesome friend got off work and could watch the kids. He did very well in the surgery, but it didn’t look good. Even without the biopsy we went ahead and scheduled the “next step,” which would be a MUCH bigger surgery. The RPLND (Retroperitoneal lymph node dissection). It’s a REALLY big surgery. They basically go in and check all the lymph nodes in the abdomen to check to see if the cancer has spread. It’s VERY invasive. It was scheduled for the week after Christmas.
We did find out all 3 tumors were cancerous, so the RPLND was definitely imminent. We also found out that they were all mixed germ cell tumors, which meant they contained both seminoma and non-seminoma. This story isn’t exactly like Joey’s, but it is a good reference on testicular cancer tumors. In our terms, his doctor said his prognosis wasn’t encouraging given the mix of the type of his tumors. Not really something you want to hear, right? Well, he had the RPLND when scheduled, and it was a very hard surgery for him. He recovered surprisingly quickly, but little did we know the lasting effects that surgery would have. We also got the “all clear” from that surgery! We were SO happy! It hadn’t spread! They said the chances then of it spreading drops down SIGNIFICANTLY. Phew!
There were many different physical complications over the next few months from the RPLND. His abdominal muscles “buckled,” so his core strength was greatly compromised. He also started having Vocal Chord Dysfunction where his vocal chords close randomly and cuts off his airways. It’s really scary! He worked so hard to get better, though, and he was doing so well considering these new physical complications. Then that summer something random came up. They insisted he had a pulmonary embolism, but he didn’t. They did a couple more scans and there was definitely something that didn’t look right. They just chalked it up to the contrast, the way the body was responding, etc. Then he had his next full CT scan for his regular oncology follow-ups. There was a lymph node right along his main artery that was “lit up.” We were given 2 choices – wait for a month and see what happens or start chemo now. The oncologist didn’t want to just start chemo, of course, without knowing for sure what was going on. The problem was it was in a place they couldn’t biopsy. They couldn’t operate on his abdomen again because he was already having problems, and the more you disturb it, the worse it gets. Plus, it was on that main artery, which presents a new set of problems. We were advised to wait. This was August of 2010 (yes, less than a year later), so we’d wait until the end of September. They were actually hoping it would spread to another lymph node that they could biopsy. That wasn’t the case, BUT it was bigger and “brighter.” Treatment was inevitable. We couldn’t wait it out anymore because that was all they needed to determine the cancer had spread.
They decided to hit him with the “hard” chemo because he’s young and healthy. *There are parts of the story I’m going to leave out simply because I need to right now. Soon, I will share and explain why I had to wait to share.* They said he would notice effects of the chemo by the end of the week. Well, he was sick before we even left the hospital. It was a grueling 4 months. 1 week straight of chemo, 2 weeks off, for 4 cycles. He was admitted to the hospital for the final cycle due to he was already losing his hearing and part of his vision, and now his organs were starting to shut down. So once again, I had to leave him at the hospital and just sit at home and pray. I got to visit him each day, but it was still really hard. He had to remain a couple days beyond the final chemo treatment until his organs were cleared as functioning, white blood cell counts were at least close to normal, and vitamin levels were stable.
I’m not sure I have to go into details on how hard this was on our family beyond saying we had to drive back and forth to downtown DC 5 days (sometimes for me 4 times a day so I could take our oldest to his Special Needs Preschool class), with 3 kids under the age of 5 – one of which was a newborn that was nursing. Sometimes that drive took 2 hours even though it was just under 20 miles away. It was HARD. REALLY HARD. I called many different cancer organizations for help. I had very little respite care, and what was offered was only for our oldest since we knew he was Autism spectrum but our youngest 2 had not yet been diagnosed with SPD. My house was FALLING APART. Despite having a chronic pain disorder (and plenty of flare ups) most cancer organizations denied us help because by their terms there was an “able-bodied female” in the home. I explained my pain disorder and chronic fatigue. I explained I have a special needs child, a toddler, and a newborn, and how very sick my husband was. It didn’t matter. It was awful. I’d break down in tears, and they would just stay so cold and say well, ask the military for assistance. In fact, some were downright RUDE to me. And so I did ask the military for help. The military wouldn’t assist us because he hadn’t deployed prior to getting cancer, and the only help they offer (for what we needed at the time) was for those that had deployed only. Again, respite care was only available for the child with special needs only. It was in those days so many friends and family actually shut you out. It’s like they don’t know what to say, so they don’t say anything at all. It’s the WORST TIME EVER to shut someone who is going through this out. They NEED you – even if it’s just a phone call to say “I’m sorry I can’t physically be there, but I’m thinking of you every day.” Some people did say I’m sorry all I can do is pray. That’s ALL?? That’s AMAZING! It’s what helped us get through it! We did have an amazing group of friends and family pull together to help us with gas money because we were running out of money just paying for gas back and forth to the hospital! It was those things that people probably thought it was just a drop in the bucket, but the truth was the bucket was empty, so that drop was HUGE! If it wasn’t for those huge drops and our Faith, I don’t know how we would have made it through. To say God is my rock is an understatement. He was there when it felt like nobody else was!
We learned a lot in those 2 years. We learned a lot about testicular cancer. I can honestly say I really new NOTHING about it prior to his diagnosis other than a couple of famous people had it. I learned a lot about what support is – and what it isn’t. I learned that the best way to help a family in need is to ASK THEM. Maybe you can’t give money, maybe you can’t be there physically, but I bet there is still something that would make a huge difference in their lives. So, if there is any awareness I want to raise it’s this – there are many types of cancers out there, and they all need to be made known – not just the common ones. We can’t raise awareness if we stick to only what everybody mostly knows about – we need to stretch FAR beyond that. Help isn’t always available for everyone, but you can be – even if it’s just to lend an ear. You never know how something that seems so small could make the biggest difference in the lives of those who are struggling during the hard times cancer can bring. My husband is now a 2x cancer survivor, and we made (and lost) many friends along the way. Even in our hard time we reached out to their spouses to let them know what a difference they made in our lives and how we appreciated them. We were better people for having known them. It definitely doesn’t bring their spouse back, but I could tell what a difference it made just for them to hear that. Sometimes the best support we can give is sharing memories for those that lost the fight and to offer encouragement and love for those that are fighting or have survived the fight. Another probably not-so-well known fact is that “survived” means 5 years beyond diagnosis. I pray my husband is a survivor for much, much longer, and even though the effects of his surgeries and chemo haunt us daily we are filled with HOPE and know there is PURPOSE in all of this, and I have faith he is going to touch many more lives in his journey! I know he’s MY hero! I admire him so much and am so, so thankful he is still here with our family!
*In full disclosure – I know I’ve shared before that I don’t support some cancer organizations due to my personal beliefs and experiences (in fact, I’d even go so far to say I’m adamant about sharing my opposition to them – surprisingly more due to my personal beliefs than my experiences, though. My beliefs are my convictions, my experiences help me grow), so although I haven’t had a chance to read all of the other posts, I will add the disclaimer that I may not agree or support all of the other information shared. I will address in private which organizations I do/don’t support and my reasons if you’d like to contact me personally at firstname.lastname@example.org*