Thursday, June 1, 2017

Heat + MS = BLEH

June 2017

We had a fantastic five days in Florida, but let me tell you what, 96 degree weather and MS are NOT good bedfellows. I was kind of okay during the day, but the nights were the worst. I was driven from bed and into the bathroom more than once. Throwing up is always fun.


Thank goodness for zofran. I think I would've died without it. Now that I'm back home, things are starting to settle down and level out. Holding off on the food I really wanted to eat and having salads instead helped a ton. It didn't weigh me down or make me super hot.

My husband put water in me like crazy, but it still wasn't enough to kill the harsh effects of the heat.

I didn't realize how bad it could get.

We're heading out on our trip very soon, and I'm hoping to be able to focus better than I have been. I feel woozy most of the day, but the dizziness has backed off some.

We did have a good time though, and we didn't really say the C word but once or twice. It was like a nun breathing over your shoulder while you're taking a test at Catholic school. Always there, but rarely acknowledged.

Our insurance company is pretty dang amazing though. They've been in touch a couple of times to see how/if they can help in any way as my husband goes through this. Back when my MS was diagnosed, they also assigned me a personal caseworker. She calls and asks me how I'm doing at least once every couple of months. Copaxone also does this. For a while, it was every month, but now that I have things kind of under control, it's backed off a bit.

I did set up a caring bridge site. If you're not familiar, it's a pretty awesome little place where you can post updates for people who want to stay in the know without having to send a billion texts or make a billion phone calls (or post everything on social media for the world to read).

If you haven't, and you're going through something personal health-wise, you may want to consider it. It's free. Go here.

I'll let you all know what I think of the doctors in Indiana once we get there. Fingers crossed they're as amazing as they seem thus far.

Until next time!

Thursday, May 25, 2017

Time for a Vacation

May 2017

Well, the PET scan was done. No change in the tumor at all.

Our worst fears had been realized.

We start doing research on the best RPLND surgeons in the country, and we hit upon two doctors: Dr. Einhorn and Dr. Carey at the University of Indiana.

Arrangements have been made to travel there and have the surgery done. We're finished taking risks. Dr. Einhorn is the leading testicular cancer doctor in the US, and Dr. Carey does RPLND surgery. All records have been sent to them, and surgery is scheduled for June 8th, with a consult the afternoon of June 7th with both doctors.

Yes, it's going to cost money. No, we're not concerned about that. What matters at this point is my husband surviving. Period.

He has to live. There isn't another option.

It's bad enough that this disease causes people to have PTSD where their health is concerned. Every twinge, every ache, and he's going to think the cancer is back for the rest of his damned life. Even four years, ten years, or fifteen years from now, he'll worry.

So, from now until Tuesday, the C word won't be spoken. We're going to lay on a beach and pretend everything is okay for five days. When we come back, we'll prepare ourselves for the worst and hope for the best.

My annual MRI was done Monday, so we'll deal with whatever comes from that when we return home, too.

I'll be updating this blog as we move forward now.

If anyone wants step-by-step recipes, drop a comment down below, and I'll get in here and post some.

Remember to do those self exams, fellas!

Until next time.

Wednesday, May 24, 2017

BEP Chemo Round 3

April 2017

On the third, we again prepare for a week in the infusion center. Hubs isn't feeling any better. Not that we thought it would be perfect, but he was totally prepared to be back to the place he was after the first round. We weren't sure if it was because of the complications along the way or if that was totally normal.

But our morning rituals of a bread item (he really liked french toast bagels with some kind of jam or jelly on them) was keeping his stomach in check. He still felt sick, but managed to not throw up through this whole process except the day he was admitted to the hospital (and that was caused by the meds given to stop the shaking).

Monday through Thursday went well. No adverse reaction to the bleo. Yay! I had a work event that was out of town on Saturday, so I left early Friday morning to drive there. His father and sister came to stay with him. I called about a gabillion times to check on him, make sure everything went smoothly, and ask how he was feeling. It was nerve-wracking to be away from him after everything that had gone wrong by that point. He spent the weekend in bed, not feeling well at all. Fatigue, loss of appetite, and shortness of breath were the biggest issues at that point.

The PICC line was removed at the infusion center Friday afternoon.

Everything seemed to be going as well as could be expected until late Tuesday evening. He shows me his arm where the PICC line was. That vein was super dark and there was a knot on his inner arm. Since there was an appointment set with the doctor for Thursday, we decided to wait and say something then.

Turns out, the one complication that can come with a PICC line is a blood clot. After an ultrasound of the entire vein, it's decided he has DVT (deep-vein thrombosis). Doc puts hubs on a blood thinner. Round two of the bleo for that cycle was infused that afternoon, he asked for hydration in addition because he was having a hard time drinking anything, and we headed home.

Blood. That's what happened that next weekend. In the toilet, where it's not supposed to be. We discuss and decide it'll be okay to wait until Thursday when we have the appointment with the doc. Why? Because half a teaspoon of blood looks like a lot more when it hits the water, and he wasn't bleeding when he wasn't using the bathroom.

Doc didn't think there was anything to be worried about, said that it was probably a fissure due to a hemorrhoid, but he did tell hubs to go ahead and stop the blood thinners. When we got the results from the blood test that morning, it showed his white count down to four. This will matter in a moment...

Round three bleo was infused April 20th, along with some more hydration, and we headed home where he proceeded to collapse into bed.

Now, I know I make it seem like I was all good that whole time, but I was stressed beyond belief. One of the drawbacks of the way my MS affects me is that when my blood pressure goes up, my brain starts acting stupid. I battled nausea daily during this process, and my joints were screaming from sitting all day. There was a lot of pain to deal with. I was popping Aleve twice a day like tic-tacs, and that was causing other issues. My body struggles with medications. I'd been holding back my tears because I had hope that the chemo would be it, and I'd be able to breathe again soon. Crying also makes me very, very ill.

That was the last treatment in the cycle. We were hopeful. So very hopeful.

Thursday evening, a fever set in. There were no tremors or shaking, but no matter what I did, I couldn't get his temperature to go back down.

We pile in the car and head to the ER after a terse conversation with the doctor.

They admitted him, put a triple central line in his neck, and kept him five days. His white count was at zero, and it took the full five days for it to come back up to a level they were comfortable releasing him with.

I couldn't stay. There was nowhere for me to sleep. Luckily, that hospital was only about twenty minutes from the house. It was over an hour to the one he was admitted to the first time. So, I spent my days there and my nights at home.

We were tense by the time they released him. He just wanted to go home, and I was worried there was something they weren't telling us. Things were nearing a breaking point by the time the doctor came in and signed the papers. Turned out it was probably the fissure causing the fever. Awesome. Not.

PET scans and CTs follow. I'll start on May tomorrow and go into what happened.

Until then!

Tuesday, May 23, 2017

BEP Chemo Round 2

I tried to do this yesterday, but my MS is making my ears ring, and it's giving me headaches. But here I am! Onward!

March 2017

A third round of bleomycin was given on the seventh, but it wasn't hitting my husband as hard as he thought it would. He was on an upswing, and he was even back to eating some food with (very, very light) black pepper.

When he started round two, he was a little brighter and a little more positive.

On the thirteenth, we again hit the infusion center ready for the week. We'd learned what he'd want and not want as the week progressed, and we were well prepared. He worked, and I took the week off while I sat with him, focusing on his needs, and taking care of him in general. Neither of us knew what to expect, but we'd heard round two was worse than round one, so we were being cautious.

Monday through Wednesday went pretty well, but he was wiped out at the end of each day. By Thursday, he wasn't hungry anymore, and his port was really sore. Still no showers because they were leaving the port site accessed so they wouldn't have to stick him every day. You can't shower while your port is open like that. Friday, they took the needle out and he had the first shower he'd dared in over four weeks.

Saturday, he woke up complaining that the port was sore and so was his neck. I looked at it and noticed it was red, but figured it was because it had been used all week. By the way, it was still very bruised. Remember, this is four weeks from the implant date. *worry*

By Monday, it was red enough that I called the doctor's emergency number. Try to keep up here, because this begins a whirlwind of crazy.

We headed down to the office the doc was in that day and he had a nurse take cultures from the port. They infused a ton of hydration that day and got my husband an appointment with an infectious disease doctor.

Tuesday, the bleomycin was given via vein (this is the only part of the chemo treatment they can do without a central line) because the port was so red and angry looking.

Wednesday, we headed to the infectious disease guy at 9am. Cultures came back positive for several strands of staph. Dalbavancin was infused via an IV and Bactrim was prescribed. We were told the port needed to come out that day, and an appointment was made at the same place my husband had it put in for that afternoon. While we're sitting in the infusion center, our daughter's school calls and tells us she's fallen and messed up her face and knees.

Once the infusion is done, we head to the school, grab the kiddo, and go to the hospital for port removal. To give you an idea of how badly her face was jacked up, people in the hospital kept stopping and asking her if she was okay. Yeah...

So, we get the port out, and we manage to get home before 6pm. Of course, we had to pick up a prescription for pain, so I was also able to tend the girl child's face while at the pharmacy. Again, we're told he can't have a shower for seven days.

Next morning (Thursday), her face scab is super yellow. I take her to the doctor. Infected. Joy.

My husband is feeling fluish, but he had a flu shot before chemo started, so we're not worried beyond the aches in his muscles. After research, we discover this can be a side-effect of staph. Awesome. Not.

He laid in the bed all weekend and could barely walk to the mailbox without getting winded by that point.

On Monday, the order came down that the Bactrim dose needed to be doubled (just to be safe). So, rather than once a day, he began taking it twice a day.

Tuesday arrived, and we headed to the infusion center for the Bleomycin infusion. His temp was up to 99.2, but they decided to go ahead with treatment. All seemed to be going well, and he had the IV removed and got up to go to the bathroom. When he came back, he was shaking all over, and the shizz hit the fan.

Full rigors and a temperature that spiked to 104. By some miracle, one of the nurses managed to get a new IV in, and the medications started. They flooded him with fluids, hit him with demeral and phenergan, and called emergency transport. I got in the car and followed them to the hospital, freaking out.

He stayed there through Friday with a white count that was nearly zero, and they hit him with broad-spectrum antibiotics. I stayed with him and just did my Copaxone shots in the visitor's bathroom.

Before releasing him, they inserted a PICC line so chemo could continue the following Monday (we were back to the five day treatments they needed the central line for). No showers as long as the PICC was in.

He was sooooo happy. *sarcasm* Not only that, but he was a little bit traumatized from the whole experience.

Saturday morning, he woke up okay, but then after taking his meds for the day, started to shake and get a fever. After much research, we discover that everything he'd been experiencing since the staph had been found was related to a sulfa allergy. I call the doc, explain myself, and pump hubs full of motrin, tylenol, and benadryl.

He was better by that evening and continued to improve as the weekend went on. Now, because the doc was nervous about it being the bleo infusions, those were moved to Thursdays so he'd be in the office should anything go awry.

That was the last three weeks of March. We thought we were over the worst of it. Again, we couldn't have been more wrong.

April begins a whole new set of issues.

I'll get into that tomorrow.

Until then.

Friday, May 19, 2017

BEP Chemo - Round 1

February 2017

This month was harrowing. Before a person starts this particular chemotherapy, there are a few things that have to be done:
  1. Pulmonary Function Test - so they know your heart can take it
  2. Port Insertion - this involves putting a central line into your aorta
  3. ENT Dr. - for a hearing check so they know your function before/after and can detect issues
  4. Chemo Training - this is where they tell you what to expect over the next nine weeks
So, all the tests were done, and my husband went for outpatient surgery to have the port inserted the Friday before chemo was to begin. A port is basically a box inserted under the skin of the chest area with a catheter that drops right into your bloodstream. If you want to know more (and you should if you're about to undergo this treatment) click here. That's the one he had put in.

Our first major red flag was serious bruising around the port area. It was bad. Several nurses commented on it, and a couple asked if my husband was on any kind of blood thinners (he wasn't, of course). My hackles rose, and so did his. We exchanged "looks." If you're close with someone, you both know this means you're going to talk about it later and over-examine it to death.

Now, after you get a port, you can't get the area wet (shower) for at least seven days. Keep this in mind as we trudge forward. After ten days, you can remove the butterfly stitches holding the insertion area closed.

His chest was sore as hell. If we'd known/been told that it would be that bad, he would've gotten it put in a lot sooner so it would've had time to heal a little before they started poking it.

It was accessed for the first time the next Monday. They had to stick it twice to get blood return, and the nurse wasn't gentle. At all. He'd been bathing out of a bucket, and he didn't get the area wet at ALL. We were super careful in order to avoid infection.

Chemo training taught us all about care of the port, and we were told about foods to avoid, foods that might be good, and things to watch out for. We were also given an emergency number card to reach the on-call doctor. Just in case.

A few things you have to be cautious of are:
  • Fever
  • Disorientation
  • Vomiting that won't stop
  • Dehydration
Okay, we both figured that was pretty straightforward. We had this. It was doable.

I shopped for foods I thought he might be able to keep down and that wouldn't taste bad. All the spices in my cabinet were ignored except salt. I also ordered FIT fruit and veggie wash, because everything you cook HAS to be cleaned thoroughly. Chicken broth was stocked up on. Friends sent masks, gloves, and other little care package items like sanitation wipes and chocolate Ensure.

We were ready (we thought).

Monday, February 20, 2017, we got up early and headed for the treatment center. Both of us were nervous, but I'd packed us lunch and some snacks, and we were prepared to work from there. Laptops and other things were in abundance. I probably looked like a crazy person with as many bags as I was carrying.

Once we got there, he signed in and we waited, nervous. Crazy nervous. We didn't know what to expect.

They weighed him, took his BP, and accessed his port (see note above) to draw some blood before releasing us into the ward for treatment. I grabbed a rolling desk, and he set up his laptop. A nurse came over with the bloodwork results, and she said he was good to go before explaining exactly what she was going to give him.

Steroids, anti-nausea drugs, potassium, and fluids were all given before the etoposide and cisplatin (those last two only took an hour each). We got there at 7:30am and we left at 4pm. Not kidding.

He was feeling fine, and dinner that night was a carefully constructed rice and chicken meal. I seasoned everything with only salt and chicken broth. No vomiting. Yay! He wasn't even feeling sick, but we didn't want to set anything off with seasonings of ANY kind. Better to be safe than sorry.

This repeated for the next four days. 8-4 treatment, and a bland dinner to follow. Here are some of the things I cooked (remember, just salt and/or chicken broth for seasoning):
  • Steak and simple salad (dressing was oil and vinegar)
  • Pasta with plain butter sauce and tomatoes
  • Pan fried chicken (vegetable oil only--no flour or anything--naked) with chicken stock rice and fresh green beans also cooked in chicken stock
  • Soup with fresh veggies, leftover chicken, and chicken stock
  • Pork chops with rice and gravy with beef stock (he didn't like the flavor of the beef stock by this point, so he went with naked rice) and a side salad
That was week one. I kept it up for the following weeks, using only fresh veggies and rice and pasta as sides.

By that Thursday, it hit him. He wasn't interested in food very much at all. He ate what he could, but he was more interested in the Ensure than anything else. Grapes, bananas, and apples were a Godsend. He loved them.

For breakfast, we'd gotten into a rhythm that included some kind of bread item before we left for chemo. Lunches I packed him always had fruit and Nature Valley granola bars (the plain honey oat ones). There was plenty of ginger ale at the treatment center, too.

Friday, February 24, 2017, after five infusions, he was tired, nauseated, and achy. Not to mention the pain he was experiencing in the port they'd been sticking all week or the fact that he still couldn't shower.

He laid in bed all weekend. Even the anti-nausea drugs they prescribed weren't cutting it, but I pressed the heck out of him to keep drinking fluids.

It was scary as hell. This strong, capable man had been reduced to a sleeping pile of goo in just five days.

We stuck to our schedule of breakfast, and he ate every morning whether he felt like it or not. He knew as well as I did that he needed something in his stomach besides chemo drugs.

Tuesday, we headed back to the infusion center for another round of bleomycin. Shockingly, he was actually starting to feel better. As the days passed, his wellness continued upward. He was feeling so much better by the time he was due to start round two, we thought it might not be nearly as bad as we expected.

Boy, were we wrong.

Round 2 (March) will be discussed Monday. I'm taking the weekend to recharge.

If you're getting ready to care for someone going through this, try and remember to wash everything, use bar soap on your hands always, and cook bland food. If you're the one about to go through it, try and be gentle with your caretaker, and don't fight them when they try to get you to do something. Open communication is the only way you're both going to survive it.

Until next time!

Thursday, May 18, 2017

Danger, Will Robinson! Danger!

If you've been following along, welcome back. If you're new, I urge you to head backward and start from post 1. They're not long, but it'll catch you up to the story thus far. As I said before, my husband had been going for scans monthly, and his oncologist had been keeping an eye on his tumor markers. We now go into

December 2016 - the month everything went to hell in a handbasket

So, my husband's tumor markers never returned to zero after the operation. They dropped significantly, but this is one reason the doc was keeping such a close eye. Each month, they were doubling.

In December, they rose to a much higher level. Wanna know the kicker? Nothing was showing up on the CT scans. Nothing. Nada. Zero.

So, he was scheduled for a PET. Turns out, there's a 3cm tumor on his abdominal lymph nodes.

We asked the oncologist what that meant, and he informs us that means my husband will have to undergo chemotherapy (BEP - 3 rounds). You've never seen a more wretched couple of people.

Being the information/education seekers we are, our searches began. What we came across scared the crap out of us.

We asked for time to seek a second opinion and sent files and e-mails to one of the top TC oncologists here in Atlanta. First appointment availability was in January. We took it.

Now, my personal suggestion is to seek/find all the information you can from reputable sources if you're at this stage of the process. If you go looking at things from survivors or those suffering through this, you'll only end up crying in a corner with a box of tissues. Facebook also has some excellent resources via groups and pages. Lots of support to be found there.

Let's move on to

January 2017

Second opinion doctor says he also recommends BEP chemo. But, he tells us something we hadn't heard: If the tumor is teratoma, the chemo won't do anything to it. Looking at the path report (if you're new, you can find it on this post), that doesn't look as likely. Teratoma only made up a small portion of the original tumor.

I ask if it might be better to get a biopsy to be sure before going through the crazy that's chemo. That option isn't a good one because it can cause the cancer to "seed" or spread by being opened up.

Basically, worst-case will be if the tumor is entirely teratoma. If that turns out to be the case, the chemo will do nothing to it, and we'll still be looking at surgery.

Let me take a moment here and give you an aside/some education on what kind of surgery this is.

It's called an RPLND. Defined:

Retroperitoneal lymph node dissection (RPLND) is a procedure to remove abdominal lymph nodes to treat testicular cancer, as well as help establish its exact stage and type. It is usually performed using an incision that extends from the sternum to several inches below the navel.

If you look at the human lymphatic system, you'll see exactly where these nodes are spread through the body. Here's a photo because I'm a visual person:

Let's zoom in to where it matters (abdomen) and get anatomical:

As you can see, these particular nodes are wrapped around major blood vessels. These are the nodes into which the testes drain.

Back to the matter at hand.

Now, from what we've been able to glean from research and speaking with doctors (lots and lots of them), teratoma doesn't make tumor markers rise.

We make a (well informed) decision to go ahead with the BEP (or PEB): bleomycin, etoposide, and cisplatin chemo. It started February 20th.

BEP (three cycles) goes like this:
  • Week 1: 5 days (M-F) - etoposide and cisplatin daily with bleomycin also given on Tuesday
  • Week 2: bleomycin on Tuesday
  • Week 3: bleomycin on Tuesday
  • Week 4: 5 days (M-F) - etoposide and cisplatin daily with bleomycin also given on Tuesday
  • Week 5: bleomycin on Tuesday
  • Week 6: bleomycin on Tuesday
  • Week 7: 5 days (M-F) - etoposide and cisplatin daily with bleomycin also given on Tuesday
  • Week 8: bleomycin on Tuesday
  • Week 9: bleomycin on Tuesday
I'll tell you the tale of February 2017 tomorrow and go into all the other things infused with these drugs.

Until then!

Wednesday, May 17, 2017

My Final Diagnosis

September 2016

It was the 13th day of the month when I got my firm MS diagnosis. My husband went with me and was patient as I asked a billion questions. See, I'm an education seeker. I want to know all the facts about everything before I jump in with both feet. I ask, I get answers, I compute, and I ask other things about what I was just told.

Before my doctor even told me it was MS for sure, I'd already gathered as much information as my brain could handle. I found an amazing website called My MS Team. Clicking the link will take you there. It's a plethora of educational resources.

Anyway, as we sat there in her office, I felt the dark cloud move over us.

When she said, "You have RRMS." I was kind of relieved. I was worried she'd give me really bad news and say it was SPMS or PPMS.

There are 5 kinds of multiple sclerosis: 

  • RRMS - Relapsing Remitting
  • SPMS - Secondary Progressive
  • PPMS - Primary Progressive
  • PRMS - Progressive Relapsing
  • Pediatric
You can do a quick internet search to see why they differ. You'll also see why I was somewhat relieved.

Of course, now we're going to talk about treatment, and this is where I got rather squeamish.

You see, I'm flat terrified of needles.

Guess what the primary treatment (as of right now) is for MS?

Yep. Shots.

I was assured that I'd never have to see a needle coming at me. They were right about that. I'll tell you now what meds I take every week (and for someone who was loathe to even take a tylenol when needed, this was a huge lifestyle change).
  • Vitamin D - daily
  • B12 - 5x per week
  • Vitamin B1 - daily
  • Folic Acid - daily
  • Copaxone - 3x weekly (M, W, F) - this is the injection
So, I cowered in fear for about twenty-four hours while I waited for the nurse to come and show me how to use the tools the company provides.

I'm not sure it's really sunk in, still, that I have to do this three times a week EVERY WEEK until I die. Like, I hear it, and I type it, but I don't think the enormity of it has hit me yet. I mean, shouldn't I be in a corner somewhere bawling my friggin eyes out?

Yet, I've forged ahead.

As I progressed through trying to get the depth setting for my shots figured out (I've had a few pain issues with the injection sites as well as other things), my husband continued to go to the doctor and have blood work, and he kept getting scans monthly.

December 2016 was a month for the record books, and everything has gone kinda nuts since then.

This is where his journey leaps off a cliff and screams, "Geronimo!"

I'll get into that tomorrow.

If you're an MS warrior, what medication do you use? Is there a reason you chose it?

Until then.

Tuesday, May 16, 2017

Tests, Tests, and More Tests

June 2016

Now, I know what you're probably thinking, and you're right. This is a lot to handle. It is, but it's also where couples tend to come closer together or get forced apart. There's a lot of stress, poking, prodding, and pain. Anyone who tells you otherwise is lying. To get through these things, you have to be prepared to do anything and everything for the benefit of your spouse, and a TON of understanding and empathy is needed if you want to stay together.

Anyway, let's continue on.

I went to see my regular doctor at the beginning of the month because I was still dizzy as hell. He told me I probably have benign paroxysmal positional vertigo, or BPPV. He wanted me to go to physical therapy so I could have the Epley Maneuver done to get rid of the little crystals in my ear canal. Every time I change position with my head, I want to vomit. Not pretty. He also told me that I should've started feeling better, even without the treatment, within a few days.

I looked it up online and did it at home. Nada.

A week later, I called a neurologist and make an appointment. I just had a feeling.

She was totally booked out until July, but I took what I could get.

At the end of the month, I had a work event I had to travel to. It went well, but I still felt like shizz, and I flat passed out at the end of every day. When I got home, I went to see the neurologist, and the testing started. My eyes were still jumping around, but I was managing by not reading, writing, or doing much of anything that required intense focus.

July 2016

I get an MRI of my brain. Turns out, there are several lesions in the area marked below.

If we explode the brain, you can see why the neurologist became concerned over the location of the lesions (white spots in center added by me). This is kind of what my head looked like:

It's back to the MRI machine for me so she can look at my C-Spine (to be sure nothing funky is going on there). That one came back totally clear.

Now, in order to get a proper MS diagnosis, you have to have a spinal tap done. It's the presence of certain chemicals in the spinal fluid, along with the lesions on the brain and/or C-Spine, that tells the neurologist if you FOR SURE have MS.

So, she sent me to a place where they do those things all the time, and I was given strict instructions. I must lie flat for at least 24 hours afterward. I'm kind of an active go-getter, so this was a harsher blow than it might seem.

My husband took the day off work and drove me down there, and he stayed right by my side until I was okay enough to get up and move around.

It was painful, yes, but they were very careful and put me in an X-Ray machine while they inserted the needle to draw out the fluid.

For over a week afterward, every time I bent over, my head throbbed. It was awful. But, I got really good at picking things up off the floor with my feet. Ha!

But it got better.

Tomorrow, I'll finish up my journey to my MS diagnosis, what kind it is, tell you about medications I was put on, and dive into the fun with those.

Until then!

Monday, May 15, 2017

Backing Up to Testicular Cancer Surgery

April 2016

Okay, so I'm taking a leap backward before we go forward once again. Stay with me.
My eyes started buggaring up at the beginning of that month. Remember those new glasses I mentioned? Yeah...
I headed to Roanoke, VA, for a work-related event, and convinced my husband to meet me in Ashville, NC, the following week, so we could hang out and get a mini vacation with just the two of us. Since I'd had my event, Darling Daughter (who was ten at the time) stayed with family in TN.

In other words, my husband and I were free to claim some private time.

We check into the b&b we're staying at, and he tells me about a lump he's found on his man bits. This thing isn't small. We're talking 3cm (that's just over an inch).

He tells me he plans to see a doctor about it, but he also says the dreaded C word. For a week, we try not to think about it as we spend some time.

The next week, he called for an appointment, and the week after that, they were removing the mass and everything around it in a procedure called an orchiectomy. This all happened SO fast! Appointment with doc on Tues, ultrasound Wed, surgery Fri. 

This was the pathology report we got (and we didn't understand a lick of it):

—Mixed germ cell tumor (seminoma 75%, mature teratoma 10%, immature teratoma 5%, embryonal carcinoma 5%, yolk sac tumor 5%, 5.1cm.
—Epididymis, spermatic cord, tunica vaginalis, and surgical margin, negative for tumor.
—No definitive lymphovascular invasion seen.
—Intratubular germ cell neoplasia (ITGCN).

Gross examination:
"Left testical and spermatic cord," in formalin, consist of 92 gram purple multinodular testicle and attached spermatic cord. The testicle measures 7 x 4 x 4.3 cm and the cord measures 11 x 2 cm. The entire testis is occupied by a bilobed mass two-thirds of which is soft reddish-brown and the other third is firmer and yellowish-white, overall measuring 5.1 x 3.3 cm. No involvement of the tunica vaginalis. The epididymis is uninvolved.

Microscopic examination:
(16 H & E, including deeper levels)
The spermatic cord is negative for tumor, including the proximal surgical margin. The testicular mass is a mixed germ cell tumor comprised of the articles listed above. The seminoma cells are large, round, with either clear or pink cytoplasm, and with macronucleoli within vesicular nuclei. There are some thin fabrous septa and there are lymphocytes percolating throughout. Occassional syncytiotropholbasts are present in the seminoma. The mature teratoma shows hyaline cartilage, respiratory-type glands, focal retinal pigment, and focal squamous cysts. The immature teratoma component is represented by primative neuroepithelial structures, including rosettes and tubules. The embryonal carcinoma component has a papillary architecture and large, highly pleomorphic basophilic cells. The yolk sac tumor component shows a myxoid, microcystic, and focal glandular pattern. Some seminoma cells are occasionally seen within vascular spaces, however, possibly representing scalpel contaminant, as no definitive attachment to vessel wall is seen; therefore, no definitive lymphovascular invasion is seen. The epididymis and tunica vaginalis are negative for tumor. The seminiferous tubules often show lack of maturation and large atypical cells with clear cytoplasm.

He was in a lot of pain for a number of weeks. This surgery is no joke. They remove everything. It's very invasive.

Now, I have more knowledge of what that report means, but in the interest of keeping you where we were at the time, I won't go into it. This is also a record of learning and how knowledge was gained. I don't wanna jump ahead.

We were told by the urilogical surgeon that after this surgery, there was a very good chance that would be it (true).

My husband had just turned 44, and we'd just celebrated our second wedding anniversary.

The oncologist we were referred to did tests every other month after this and told us more may be needed but they wanted to watch the AFP numbers rather than leap into chemo. We agreed with that 100%. What happened next will come later when the timeline dictates.

For tomorrow, we need to go back to the beginning of June because my fun was just getting started.

I'm going to interject here: CHECK YOUR MAN BERRIES!! PLEASE PLEASE! Mamas, teaching your sons to do this is just as important as teaching your daughters how to do self-exams on their breasts.

Until then!

Saturday, May 13, 2017

MS Appears

May 2016

My husband and I went to IL for my middle son's graduation. We flew, and I fell asleep on the plane. For many people, this is a usual occurance, but I haven't fallen asleep during the day in over twenty years unless I was sick.

Actually, I don't even think you could call it sleep. I passed out.

Then, in the car, on the drive from O'Hare to the little town three hours out we were headed to, I passed out several times.

It was just a month before when my eyes started giving me trouble, and I was sporting new glasses on the trip, so I figured it was just the adjustment to those that was making me feel a little woozy. Graduation happened, and I started to feel a little better. Again, I wrote it off as my eyes.

We flew home afterward, and I was still doing okay.

Approximately twelve hours later, I felt like someone buckled me into a Tilt-a-whirl, hit the on button, and left me.

I was dizzy.

I was nauseated.

I was sure I was going to die.

That afternoon, I passed out on the couch and slept, and slept, and slept some more.

On the couch is where my husband found me that evening, and he immediately knew something was very wrong. Remember when I said I never went to sleep in the middle of the day? He was borderline panicked because he'd never seen me do that.

We knew something was afoot, so I headed to the minute clinic the next day. To be honest, I really shouldn't have been driving. I felt like I was tipsy. The doctor there was alarmed, but she treated me appropriately and told me if I didn't feel better in just a few days, to go see my primary care doctor.

This was just the beginning, and tomorrow, I'm going to back up to April and tell my husband's testicular cancer journey in tandem with my journey through MS so far.

More later. See y'all then.

Friday, May 12, 2017


Welcome! This blog is to let me get things out. Maybe it'll help someone deal with something they might be going through. My first post about my crazy journey--and it's insane, let me tell you--will happen tomorrow.

Comments are always welcome, but please be nice.

*waves bye for now*

Heat + MS = BLEH

June 2017 We had a fantastic five days in Florida, but let me tell you what, 96 degree weather and MS are NOT good bedfellows. I was kind ...