After the scope

OK… time to update everybody on this morning’s procedure. The doctor wanted to scope me again to see if he could find any obvious reason why I am still in pain. Apparently, after 3 months of being on pain narcotics he needs to refer me to a pain specialist. The pain level has subsided greatly in this time but it still persists and still requires narcotics to manage it.

I asked the doctor to be gentle. He said he would. He lied.

The procedure itself has caused increased pain and bleeding. The doctor said it should subside in a day or two. I hope he wasn’t lying again. He really is a great surgeon.

The only thing he found is the large, angry, anal fissure. It is not healing. This is what has been causing all of my pain since last October. It calmed down after my first surgery when I had a loop ileostomy to bypass the fissure altogether. I was actually pain free for a couple months between surgeries. My surgery on January 4th to remove the tumor was extremely close to the fissure and aggravated it again. This is the pain I have been fighting since January. Like I said, the pain is getting better but the fissure is showing no signs of healing. The doctor gave me a Botox injection to relax the muscles and hopefully facilitate healing and help with the pain.

We also got to discuss other options to heal the fissure. There are not many and run the risk of causing incontinence. Long term, if the fissure does not heal, chances are high that I will need to choose between diapers or a permanent colostomy bag installed at the bottom end of my colon. I am not fond of either option.

Pain control is important but I really need the fissure to heal. PLEASE PRAY THAT MY FISSURE HEALS.

Thank you

Isn’t he lovely?

That’s my man …. back from the OR. 

Results are in, everything looks good, except for the anal fissure….grrrrrrr It is not healing well. Another Botox injection  was given, he know has a wrinkle free Anus again! (Sorry – been hanging out with a colorectal surgeon too much these days).

This leads us to a major prayer request, we need healing! That fissure simply has to heal in order for the Ileostomy to be reversed. 

That’s the latest. Thanks for the support. Remember the Spaghetti Feed, please share it and encourage people to buy tickets ahead so we know how many to expect. 

Early Wednesday

We are back at Providence Portland Medical Center today. Eric continues to experience pain which has everyone concerned. At this point in his recovery it should be subsided. 

Dr. Whiteford is planning on doing a scope to see if there is a visible cause for this and give Eric a Botox injection where the anal fissure is to hopefully relax it enough that it starts to heal.

Will update when I know more. 

Whirlwind of activity

Wow, it’s been a busy couple of weeks for #TeamEric.

Eric has had three doctor appointments in the past nine days. He also started his second round of chemotherapy on March 7. He takes 3000 mg (6 – 50 mg honkin’ big pills) of capecitabine with breakfast and dinner. He sees his Oncologist, Dr. Ian Schnadig, or his Nurse Practicioner, Tawna Pangborne every three weeks to look at his blood counts and see how he’s handling the chemo and any side effects. He seems to be tolerating it well, with exception of having the “blahs” most days. He just feels blah.

_20170125_124253

Mark Whiteford, MD

The most pressing issue right now continues to be the pain Eric is experiencing. His surgeon, Dr. Mark Whiteford is fantastic and doesn’t mince words with us, even though we spend a lot of time laughing with him.

 

He’s concerned that the pain is still there this long after surgery. We  know that the anal fissure (graphic on the page) is still not healed, however he feels that pain should be gone since he has the ostomy. Sometime in the next week or two, he will be taking Eric back to the OR for a “look-see”. Perhaps there is something obvious causing the pain. He will give Eric another botox injection to relax the fissure and allow it to heal. As long as it’s there, he cannot reverse the ostomy .

Once he’s done that, we will map out the next course of action, which may include bringing a Pain specialist on board.

hosmer-danielle
One major piece of news we learned yesterday, is that the Pulmonologist that is the lead for Eric’s lungs is leaving practice to focus on her family. I will be starting a separate page with information on this, it’s a critical piece to Eric’s medical journey these past 5 years.

Dr. Danielle Hosmer  has been a part of our life for nearly 4 years and as far as we are concerned, she was instrumental in saving Eric when his lungs were bottoming out. She has been there when we had questions, when we had successes and failures and truly has been an amazing person to work with. She has two other associates that were a part of his care from time to time and we will discuss with her, where she feels his lungs will get the best care. It’s going to be a big loss for us as well as those suffering with Interstitial Lung Disease as there are so few around that understand it and are able to diagnose it. Please pray that we find a new physician that will fill her shoes well.

Ok, I think that catches us up. We have the Spaghetti Feed for Eric coming up on March 25th and our GoFundMe is moving along – THANK YOU! Please consider sharing the info with family and friends, the Support page give more information as to why this is so important to us.

 

Support Page up

We now have the Support Eric page up and running with all the different ways you can help us. Of course, prayers are always welcome. Our reality is that in July, we will be fully responsible for paying our COBRA payments in full, which amounts to $2300 a month.

We will be researching other Insurance options between now and then, but if you’ve been anywhere other then under a rock lately, you know the Insurance system in the US is in a bit of an uproar right now and we have no idea what it will look like in July.

Important to us is that he keep all of his doctors and current medications. If the only way we do that is with our current plan, that’s what will happen. Somehow.

So please, share Eric’s story. It’s still being written here on earth – there will be more on that later. We will be adding more pages to discuss some of his other issues because while Cancer is the BIG one right now, he has two other medical issues that he lives with daily. At some point I think we will change the name of this place to “Not My Illness”  ….

Have a blessed day! Eric started chemo again this morning for the next 14 days.

Marissa

We moved – and an update

Welcome to “Not My Cancer”, the new home for all things Eric and his battle to fight Rectal Cancer. Excuse us as we get things settled in here, this location is new to us. 

Now that surgery is over, people have asked what’s next. Eric has a total of 18 weeks of treatment, 3 weeks of that is already done. This series of 6 rounds is 50% stronger than prior to surgery and longer each time around. He will take 3000 mg twice a day for 14 days straight and then is off for 7 days. Since the tumor was removed, there is no more radiation happening.

This Tuesday Eric will begin his second round of oral chemo. He did pretty well during the first round although in the days after he was feeling nauseous and tired.

Eric has been trying to walk daily and at the same time, he is broadcasting it through Facebook Live. It’s being cross-posted to the FB page, Eric’s Pesky Rectum for all to participate in.

We ask that you share our GoFundMe page https://www.gofundme.com/2pbadfhc with people.