Thursday, December 29, 2011

Temple Square Lights

Now that the crazy holiday season is nearly over and things have calmed down a bit, I'll be back to regular posting. Lots of updates coming your way! In the meantime, here's a sneak peak of pictures I took at Temple Square when my mom and I went to see the lights.

More to come! Hope you all had a fantastic Christmas!

Sunday, December 11, 2011

Answers

Just a quick little update.. OK, maybe not so quick.. Sorry my posts have been a little depressing lately. I just needed to finally get all of that out in the open. Things have finally slowed down a little, and after months and months and months, we have some good news! No, I'm not pregnant yet...BUT we have good news on that front finally too!

First of all, we finally got all of the tests done (except one non-pressing one) on Mike we needed. About freaking time! We have all but the results of his x-ray back, and so far so good! Cancer, nada! Still in the clear. They told us they expected his chest x-ray to be good too, but we'll find out for sure in a day or so, but we aren't expecting it to show anything, which is good!

However, with his thyroid, DHEA, and testosterone, things started getting a little whacky. His T4 levels are fine, but T3 is a little on the low side, so we're seeing if having him on some iodine won't fix that. We were also expecting his DHEA to be really low, which it is. (Sorry, not going to go into what all of those are otherwise you'd be getting a long lecture!) But here's where things start getting a little trippy...his testosterone levels tested out at levels you typically see in at 75 year old. Yes, you heard me right. 75. Our doc was amazed he is able to do the things he does. She said when they see levels this low, the person has usually lost their job, all motivation and desire, and basically can't even get out of bed. For starters, the amount of testosterone available in his blood is only 320 ng/dL (if you don't understand those units, look them up...it's too long to write them out and explain that!) when it should be about 1100 ng/dL! Then, the actual amount his body absorbs of that testosterone he has is extremely low. Hence, the reason Mike can't keep any weight on, is almost 40 lbs underweight, can't do any type of 'normal' daily activity, and much much more. Funny because people have never believed us when we say he can't do everything a normal 30 year old can, but now that we have 'proof' AND three, yes, three doctors saying he can't physically do the level activity healthy men his age do with no problem without permanently damaging his body, people actually believe us. Go figure! Sheesh.

Anyway, back to his testosterone levels. Even his oncologist said that since things have tested out perfectly with me, this could very well be the explanation behind our infertility and miscarriages. Since his levels are so low, his body makes little to no sperm, and the little it does make is most likely very unhealthy sperm, hence the miscarriages. (A little FYI to those who think miscarriages mean something is purely wrong with the woman...abnormal sperm causes them too!!) Mike will never have a decent sperm count, as infertility is a common result of chemo and radiation treatments, but puting him on testosterone will help the few sperm he does have become healthier. SO...we have Mike going on testosterone, and they are hoping this will not only help him start feeling better but also help us get pregnant with a healthy baby! Yippee!! I can't tell you how exciting this is for us! Mike said he's already noticing a little difference, which is fantastic! It's nice to finally be getting solid answers and to have HOPE!!

Another thing his doctors have told us, which no one quite believes us on, is that he will always catch even the smallest cold. This is because when you are a lymphoma survivor, Hodgkin's (which is what he had) or non-Hodgkin's, your lymphatic system no longer functions as it's supposed to, which results in a severely weakened immune system. They don't know why this is. Top it off with chemo and radiation, both of which have long-term effects seen 10+ years down the road, and it's not a good mix. Even when we go around kids who are sick with something that's "just a kid sickness," Mike WILL get it, because he has virtually no immunity. So, when we hear someone is sick with even a cold and we decide to stay home from an activity, it's not that we're paranoid that he might get it, it's the fact he WILL get it. Not only will he get it, but it takes him triple the amount of time to get over it because his body has such a difficult time fighting it. He has such bad immunity he catches things second, even third hand, which when we asked his docs about this they weren't surprised because this is typical of Hodgkin's survivors. We've tried to do things that supposedly boost your immune system, but nothing has worked because his is so compromised. As much as we would like for him to get healthier with this, it's just a fact of our lives that this is the way it's always going to be.

Here's a little clip from an article I found which perfectly explains the long-term effects Hodgkin's survivors have to worry about:
"The good news about Hodgkin''s disease is that treatment can cure the disease. The bad news is that survivors face a higher than average risk for long-term complications of these treatments, some very serious. Many patients may experience chronic fatigue that could persist for years. The most serious complications are secondary cancers and heart disease, which occur over the 2 - 3 decades following treatments. Secondary cancers include non-Hodgkin''s lymphoma, leukemia, melanoma, stomach and lung cancers, and breast and uterine cancers. Heart disease complications include coronary artery disease, stroke, heart valve problems, and cardiomyopathy (weakening of the heart muscle). Thyroid disorders are also a potential complication. Combinations of radiation and chemotherapies are especially associated with these problems. Studies of adult survivors of various childhood cancers have found that, 30 years after treatment, patients with Hodgkin’s disease have among the highest risk of developing serious health problems. Female survivors have a significantly greater risk than male survivors. In particular, women who received chest radiation are at very high risk for developing breast cancer."

Mike's 11 years out, and he's already experiencing the extreme fatigue, thyroid problems and cardiomyopathy. The only test he has to do is a stress test for his heart, which we're going to do in a few weeks, to see what it's functioning at. Last time he did this his heart was only functioning at about 55%. He's tried to do things to keep his heart functioning as well as it can, so we're hoping it hasn't continued to weaken. Keeping our fingers crossed.

People don't realize that just because you've beat cancer doesn't mean you're back to functioning at what you were before diagnosis. Cancer, chemo, and radiation take a permanent toll on your body. Just because Mike may look alright doesn't mean he's 100%, in fact he's never been able to function at 100% since before his cancer. Despite this, we are grateful he hasn't relapsed. Eleven years and counting! It's a miracle he's alive, and I am so grateful for each day he lives that is cancer-free! And, I'm so grateful that we're able to get going on things to get him feeling and functioning a little better. It's not going to 'fix' things, but it will improve things. For this we are incredibly grateful. And, we're grateful that we have such an amazing team of doctors to work with!

For more information about Hodgkin Disease, go here.
For information on what life is like after Hodgkin's, go here and here.