Relay for Life

This weekend is the Tigard-Tualatin Relay for Life. Eric, Sarah and I went and walked the first lap which honors Survivors and Caregivers. 

Its amazing to see all the support and hear the survivor stories. 

We made the decision to form a Team for next year’s event. This is now a part of our life. 

Eric walked with the Veterans 


And had his first massage since Oct. 2016

Stay tuned for more news Monday.

Update from Eric

It has been a while since I have posted any updates here but thought tonight would be a good night to do so.

Tonight, I took my very last dose of chemo. 

NO MORE CHEMO!

The radiation was finished before my surgery in January so there are no more treatments of any kind to look forward to.

My rectal pain still persists. It has gotten a lot better than when it started. To give you some perspective, I started off taking 20mg of Oxycodone every four hours. Now I am taking only 5mg-10mg a day! That is quite an improvement. There are some exceptions(like driving to the beach) where I might take 20mg a day but those are very rare. Unfortunately, I have been able to notice this slow improvement until about a month or so ago. I have not noticed any improvement for a while. 

Now that my chemo is over, my surgeon will take another look at my fissure in July and decide if I need another additional surgery to correct it or not. I really want to be completely healed and have my bag removed so that life can go back to our regular abnormal lives.

I know that God has a plan and I am so very thankful for all that he has done for us so far. I thank you all for your continued prayers and support.

We have not been asking for any additional financial support since the Spaghetti Feed. We did not reach our goal on GoFundMe but thanks to everybody who has contributed so far, we will be fine. The ticket sales to the Spaghetti Feed covered the cost of food and silent auction basket supplies. We did make money on the silent auction and other, generous donations on top of the ticket sales. Thank you to everybody who attended. The Spaghetti Feed was more for my emotional support than financial support. It really boosted my spirits to see so many people there supporting me especially since I have pretty much been a ‘shut-in’ for so long.

I am working with the folks at Clark County HR to get my benefits adjusted to a reasonable amount. Even with all of the support we have received, $2300 a month(starting July) for health benefits will eat it all up in no time. We are also working with another, private insurance agent to possibly get the rest of the family covered on their own insurance and I just maintain myself on the COBRA. We are looking at several options.

On another note, those of you who have been following my life BC(Before Cancer), know that I ruptured my achilles tendon a couple of years ago. May 12th was 2 years exactly. Although it has taken two years to get to this point, my attorney has recently filed the lawsuit to the responsible party. We knew this was coming, we just didn’t know when it would happen as lawsuits tend to take a while. We still do not know when it will be over and we can actually get a check. We would have loved to have this all resolved before I lost my job and before the medical bills started coming in. We still do not know when any moneys will actually be coming our way. It could be months or even a couple more years. I have no intention on making a profit from my cancer. When this is finally settled and and we have money in hand, I will be contacting many of you to pay back your generous contributions to us.

That wraps things up for now. Thank you all for your continued support. Prayers are still very much needed and appreciated.

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.