Wednesday, April 29, 2015

What Your Friends With Cancer Want You To Know (But Are Afraid To Say)

I read a post on Facebook yesterday that literally brought me to tears. Chad and I were sitting in the car waiting for Haven to get off work. It took me ten times as long to read this out loud to Chad as it should have because I kept breaking down and sobbing.

I want you all to read this. If Cancer has touched your life personally, you can relate. If it hasn't - PLEASE take the time to read it. The full article can be found here. It was written by Kim Helminski Keller.

While they ALL have merit, these are the points that really touched me, personally.

  1. Don’t wait on me to call you if I need anything.  Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.” 
  2. . Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness. 
  3.  I need a little time alone.  A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away.  I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing. 
  4. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please.My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love. 
  5. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together.

Tuesday, April 28, 2015

Hi Ho Hi Ho - Off To The ER We Go

Yesterday resulted in an impromptu visit to the Marion, IL Emergency Room. Chad had developed blotches on the left side of his abdomen over the past few weeks. It would come and go so it wasn't anything I was too concerned with.

He came down to my office yesterday morning to show me that not only had it spread to the right side, but it was also significantly
darker. He also told me he was having pain on his right side (everything was always happening on the left) where the blotches were. I posted to the online support group as well as we consulted both the VA Oncologist PA and Dr. Sardi's PAs - all of which agreed the best course of action would be to head to the ER because it looked like an infection.

As you are likely aware by now, Chad's Medical Coverage is through the VA - so unless we wanted a hefty bill - we had to go to their hospital, which is is Illinois. The only time they'll approve other facility care at an ER is when it is life threatening. Since this wasn't, we didn't want to risk getting stuck with even more bills we can't pay.

At the end of the day, the trip was, THANKFULLY, a waste of time! lol But it was well worth the peace of mind when not only did the blood tests come back negative for any infection, they also ran the CT Scan and it didn't show any blockages  (Or anything else to be concerned about)  which was something we were wondering about since his bowel movements are still not what they should be!

Alas, we resume being patient and let his body recover as it will. :)

Friday, April 24, 2015

Life In The Slow Lane

I posted the good news yesterday about Chad and No Chemo! Now that I am sitting down at a computer, I thought I would elaborate for our friends and family who are following this journey.

This cancer isn't new but it is rare and due to so many misdiagnosis in the early years, there's a lot left that is unknown. There are a few things we know now about this cancer that we didn't - say - 15 years ago. As with any cancer, the best chance at beating this is catching it early. Followed by ensuring your get the best treatment. That treatment depends on your pathology and that is where things get tricky.

When we left Baltimore, Dr. Sardi said chemo would not be necessary. As far as he was concerned, Chad was cancer free. The biggest fear to him, is recurrence. Some people who were in the same boat as Chad, did do chemotherapy. Preventative or Maintenance - to decrease their chance of recurrence.

I've always been of the position, that we attack it aggressively and even if it's only a 5% assist in avoiding recurrence, it's worth it. But that's easy for me to say - I'm not the one who had to do it. I've struggled with the possibility of chemo from the day we heard no lymph node involvement! Had there been cancer invasion there, chemotherapy would've been required. Due to it not spreading - it ended up being a personal choice. Chad's choice. And he didn't want it. (Who would? I hardly imagine anyone goes to sleep at night hoping they get to try some chemo in the morning)

My fear? That his fear would hinder his chance at remaining cancer free. So I put thought into it. I put research into it. And I put prayer into it. I decided not to push it. Go with the flow and see what the Oncologist said. When he said there was less than 1% benefit - it seemed a no brainer. For all we know, since so little is known about appendix cancer - it would've hurt more than it helped. Chad already has so many issues to deal with, no sense adding potentially devistating side effects to the plate because let's face it - Chemo is hard on the body.

So our plan?

In three weeks we will return to Illinois where they will perform further blood tests and a CT Scan. They will use this CT Scan to compare it to his future scans for cancer and also to make sure that everything has gone back to where it is supposed to.

Then he will continue to have his blood work every 3 months and CT Scans every 6, in hopes that we never ever, ever, ever, EVER see this godawful, hateful and disgusting disease again.

In the mean time, he has some new pain medication that is supposed to speak to his brain and tell it to stop recognizing this scar tissue as something hurtful. God willing, Chad continues to get a little better day by day and within the next 6-8 weeks, real life resumes.

Financially speaking, it's going to be very, very tight. So that's a concern but we'll work through it! if anyone in Murray has any side work that doesn't require him to bend or lift anything heavy, Let us know! (Ha ha)

Many thanks to those who still follow along with these far-too-long-and-too-informed blog posts. We appreciate your love, prayers and support!

Chad and Shan

Thursday, April 23, 2015

No Chemo!

No chemo! The Dr said it would be less than 1% beneficial. The GI appointment was a bust because they sent us to the wrong doc but the oncologist was actually really great this time.

I was concernee because our first meeting with him went less than extraordinary but this time, he was super friendly and stepped up to the plate big time.

 He's given chad a bunch of stuff to help with pain (which they believe is related to scar tissue/nerve pain) This medication may require a bit of an adjustment period but God willing, it helps him.

He has new medications to assist bowel movements, as well as some general guidelines. He is not allowed to work for at least another 4-6 weeks which will be a strain financially but if he does too much, too soon - he could risk severe damage.

We are coming back on May 14 to see if the pain meds worked , further labs and to get a CT  scan to have a look and see how things are going inside. His tumor markers (blood tests he had done this morning)  came back and they look good! So all in all - good news!

This is an update from my phone, so forgive the typos. Gotta go, meds are ready!

Friday, April 17, 2015

The Hardest Thing Is Not Having A Plan

This journey has never been easy, even though we have been very blessed to have received good news along the way. Chad's recovery is still progressing and we're hopeful the doctor appointments next week will provide some answers and help us put a plan in place.

Our family and friends have been amazing in supporting us and donating money to get us through.  But money doesn't last forever and I am starting to get stressed out. I know this is mostly in my head but I am a worrier and a planner by nature and it's hard for me not to look ahead.

We are okay for now but there's a chance Chad may not get back to work until June and when I try to plan and figure out how we're going to get through, I can't lie. I get panicked. I know it's just a matter of pinching more pennies and not buying anything unless it's an absolute necessity but it is so hard to keep life 'normal' sometimes. Gas alone lately costs me up to $40 a week. I know that may not seem like much but it adds up and quickly. Chad's diet is different than it used to be so we have to buy more healthy food and man - what a difference that makes on the grocery bill.

Really, I am just venting. I know in my heart, everything will be okay. I just stress out because I don't want Chad trying to go back to work until he is physically able without hurting himself or risking further injury, you know? Paying a few bills on time, just isn't worth the risk. But we'll get through.

Just once more obstacle.

Hopefully on the eve of April 23rd, I will have good news. That they ran some scans and everything is healing okay. That Chad's pain has let up considerably, that Chad will not need chemo as the potential perks don't outweigh the risks and that Chad is feeling great and will be going back to work and getting his life back on track by suchandsuch date! That's my goal.

In the mean time, I'll continue to ask you for your prayers, love and support. That bad pain Chad had the other night has alleviated slightly. We just pray for even a slight improvement, each day.,

Much Love,

Tuesday, April 14, 2015

Man, It's Tough.

I can't imagine what it feels like to be Chad. To go through what he has to go through. To endure the trials and tribulations. It must be impossible because to be ME - the 'caregiver', it is beyond difficult.

The feeling of helplessness. The worry. The fear. The uncertainty. The inability to understand and gauge for myself. Relying entirely on someone else to describe exactly what is going on. Pardon my language - but it's fucking hard.

Chad has had pain all day and hasn't had a bowel movement since yesterday. I am so worried he is on the verge of an obstruction. It may be nothing, it may be something. I know some pain can be 'normal' but I also just wish the appointment with the GI doctor was tomorrow instead of 9 days away. The VA has been amazing for our family, I can't complain. I just hate feeling so helpless and at the mercy of them and a 3 hour drive to get help. The only way we can get actual medical attention without waiting forever and making the trek is going to the ER but in order for them to approve out of VA care, it HAS to be extreme. 

So we're left waiting. Grinning and baring it and hoping it will pass on its own. 

God please, let this pass on it's own. :(

Wednesday, April 8, 2015

Change of Plans

See how the VA works is, even though your condition may be the same as the last time you saw your primary physician - every time you need something, even if it is a referral to someone else - you have to go see them.

Chad and I headed to Mayfield today to see his primary physician in an effort to get a referral to a GI surgeon who can try to order some tests/scans to figure out if everything in Chad's digestive system is okay or if there is something actually causing the pain and cramping.

We were originally slated to go see the Oncologist on April 14th, so we were hoping to make the appointment on that same day since traveling is such a distance/expense. Unfortunately, the GI surgeon (I guess there's only one?) is out of the office that week - so that appointment is on April 23rd. Fortunately, we were able to reschedule the oncology appointment for the same day. 

I would rather not push everything back a week but it beats having to make that long drive twice. God willing life will be relatively uneventful until then.

Monday, April 6, 2015

Wound Update - Images Included! (Click at your own risk)

The weekend was relatively uneventful (which brings me great joy now-a-days), with the exception of Chad and I nearly having a heart attack while watching the Kentucky Wildcats play (and lose) Boo!

He had a couple tough days with his pain and cramping. While everyone we speak to and everything I read suggests this is 'normal' - there's got to be something out there he can get for relief. The last few days have caused him intense cramping that made him feel like he wanted to vomit. Not good.

Vomiting would be very bad, which is why it is essential to keep sickness and germs OUT of this house. The very last thing he needs right now is a cold. His doctor is back in the office this week, so hopefully he will be able to set up an appointment with a GI doctor and/or give him some anti-cramping medication. We'll see!

On the wound front, it seems to be healing nicely. Pardon the quality of the photo, my battery was dead last night while trying to take a photo so I my phone didn't have a working flash.

Here's hoping to better days of healing!

Friday, April 3, 2015

Big Decisions on April 14th

We got the call a couple days ago, alerting us to the date of Chad's first meeting with his VA Oncologist. April 14th is the big day and it is with mixed emotions that we prepare for this visit.

"Dr V" will be his oncologist and the first (and only) encounter we had with him was less than pleasant. During this entire ordeal, while definitely challenging - most of the medical professionals we had dealt with were compassionate and wonderful. Dr V was the very first person that frustrated us beyond belief and left us feeling discouraged. Granted, in the end he did what we requested and we got where we needed to go - but that doesn't make my first impression of him any better.

This is the same individual who refused to look me in the eye when I spoke. The same individual who wouldn't even read the material I supplied for him. He was insistent that Chad didn't need anything more than a right-hemicolectomy. He was basing his opinion on absolutely nothing of course but it was his opinion nonetheless.

Thankfully, he was right. Chad's cancer did not spread and while I am beyond grateful that Dr. V was right, I won't pretend I am not dreading his "I Told You So" attitude that he is bound to have. But  let me tell you this; If he even so much as TRIES to take that road with us, tries to disrespect us, I will have chosen words for him. From Day One, we have always had the hope that things would work out the way we prayed they would (and did) but there was still always a chance - they wouldn't. Still is really because who knows what the future holds. The road we took was long and hard but we have no regrets because Chad has something he would NEVER have had with going with the VA. Peace of mind. And that's priceless.

We know Chad received care from one of the very best specialist in the USA for Appendix cancer. He knows his surgeon was thorough and knew what to look for. He was a surgical oncologist who lives and breathes this cancer every single day and he is far better than anyone within the VA network. I will give Dr. V a second chance but he better ensure this time, he is as prepared as we will be.

Which brings me to the reason for this post. Decisions. Chemo or no Chemo?

There are very few people who catch this cancer as early as Chad did. Some doctors (including Dr Sardi) say Chemo is not necessary. Some will say, depending on the pathology, it may decrease your chance of recurrence. At the end of the day it really is a personal decision.

My fear? Dr V won't even make it an option. Then again, Chad doesn't want chemo (of course he doesn't, who would?) but I would like to know his best possible line of offense. I don't want to keep playing defense incase cancer comes back. In my mind, everything possible should be done to prevent it, and if six months of chemo even gives him a 2% higher chance of ensuring it doesn't return, it's worth it to me. Provided he doesn't get too sick. That's the kicker. Is it worth it? Will his quality of life suffer? Will he spend hours hooked up to an IV, will it be pills? Will he be miserable and sick and unable to function day to day? Or will it just be another pill that can, in the long run, strengthen his chances.

Decisions, decision. Worst part is, I don't trust Dr. V. I don't trust his opinion or his decisions. So I need to make sure I am as well prepared as humanly possible prior to going into this meeting.

If you read this, please pray for clarity. Please pray for strength and please pray that Chad's recovery gets a little better. I get concerned as some symptoms don't seem to be getting better - then again, he's literally one month out of surgery. Patience.