Cody Updates by Mom

I had also come up with some other titles such as:  “Answers are best served with a side of Mayo” or “Adding mayo to the diet can cause less stress”.  Yeah, I know, cheesy but hey I cannot control the brain waves and how they work.  🙂

So, this week has been a very long week.  There were two separate communications that I was supposed to get at the beginning of the week.  I just want to note that Thursday is not the beginning of the week.  Yesterday, Wednesday isn’t the beginning of the week.  It is actually hump day that propels you into the end of the week.  This is not helpful when you are using every last piece of willpower to manage your patience and waiting abilities.

I was supposed to hear from the doctor that performed the biopsies by either phone or online message about the results of my tests.  I was also supposed to hear from my new “complex care coordinator” that was working on my referral to Mayo.

Monday was fine.  I was fairly calm and only checked my online account for the test results about 50-60 times.  Not bad, I guess.  I forced myself not to call and inquire about either item.  It wasn’t super easy but somehow I managed through the day.

Tuesday was much harder.  I finally had given in on the care coordinator and called her.  (Thank you to my oncology nurse for letting me know the number!)  I left a message asking if there was anything else she needed from me to get the referral through the system.  Sounded like a good reason to call, right?  At least it worked even if she saw through my nice message to my inability for me to wait.  She was also extremely nice and helpful.  She started my referral and let me know that Mayo would call me within the week to set up the appointments for me.  She also let me know that she would handle getting all of my medical records down to Mayo.  Within the hour I got an email that there was a voicemail at home from Mayo.  I called them right away and got my patient account set up and was put into review. This means that their review team gets my records and will take no longer than three days to determine the best doctor for me to see.  This was much better to handle because I knew I would have an appointment scheduled by the end of the day on Friday at the absolute latest.  I was also able to connect Mayo to my complex care coordinator directly to get my records.  Things were better except I still didn’t have any results from the biopsy.  I think my checking of the online site went dramatically up to the hundreds on Tuesday.  I finally had an idea.  My care coordinator had said she was going to send the biopsy results to Mayo when she got them.  I called her and she checked and said that my results were in and that she was sending them as we were on the phone.  This was around 1pm.  She however couldn’t see the actual results and could not share anything about them.  It was okay, we were still technically at the beginning of the week so I could wait a bit longer.

Wednesday was most certainly the most difficult day.  Still no results and now we are mid-week.  I was starting to think that my GI Specialist doctors thought of what the beginning of the week was meant something different than mine.  I was obsessively checking the site and my voicemail at a rate that I am not proud of.  At least Mayo had them even if I didn’t, right?  Who was I kidding?  I was wound tighter than a rubber band bouncy ball.  What was taking so long?  Was she avoiding a bad conversation?  When they sent them to Mayo did they lose them?  By the end of the day I was beyond stressed.  Luckily we had band practice for our gig this weekend so I had a good distraction and they gave me a cold drink.  Thanks guys!  You are the best.

So now, today.  Well, everything happened today.  I started my day with a phone call from Mayo.  They had finished my review of my records and were ready to schedule my appointment.  Surprisingly they had an opening on Monday (yep, this next Monday).  I took it with much relief that I would at least keep moving forward without waiting weeks on end to see a specialist.  I was assigned to a gastroenterologist MD and also a nurse practitioner in the same field.  They said that they are planning to do a scope and other tests and if I wanted to go ahead and schedule them that I could make the Monday appointment both the tests and meeting my new doctor team.  Looks like I will be having garden/fire hose for breakfast on Monday.  They did promise to make sure that they used enough medication to make me comfortable.  I am looking forward to getting more answers.  I also finally received my results of the biopsy.  They have found no cancer in tissue that they removed but did find chronic inflammation.  I am going to ask about that on Monday.  Not sure what they mean.  But good news, no cancer found!  I still have the thought in the back of my mind of the fact that they could have missed it but I will take the good news that there wasn’t any found with these tests!

Today I also got the chance to talk to the woman that started the organization “No Stomach for Cancer”.  I was so impressed that when I requested on their site to talk to someone about their experience that I actually talked to the founder, Karen.  She was so very helpful and it was nice to talk to someone that could understand the surreal cloud that I have been in for the last month.  Wow, it’s only been a month.  Oy Vey, does a lot happen in a short period of time.  Anyway, Karen gave me some great tidbits of information that she had learned from the organization.  She had the surgery six years ago.  She said the key is getting a good surgeon.  Her recovery went well and was babysitting grandchildren in three months.  Her niece who had the surgery was running a marathon in nine months.  She said many people are living quite normal and great lives without their stomach.  She also was able to send my information to one of the board members that lives here in Mpls.  She also had me send her my genetic results as she has a contact that will decipher the results in plain speech for me so I can understand more directly what I am dealing with.

We still have a little waiting but it should be okay.  Waiting is easier if you have a plan.  It also helps that this weekend is about a busy as we can get.  Tomorrow I meet a new doctor of internal medicine to hopefully have her as my new primary doctor.  I also have to go to the GI specialty clinic to get my CT and Bone scans to bring with me to Mayo.  Then it is time to get ready for having our family thanksgiving on Sunday.  Alex will be home and it will be great to spend some time with her.  Saturday Cody has a robotics tournament in Prior Lake at the high school from 6:30 am to 6 pm.  Then Jim and I have a gig with a friend of our band that needed help on Saturday in Victoria.  This is going to be more of a jam session but I get to sing two of my favorite songs so I am looking forward to the gig. 🙂  Sunday is Thanksgiving for us and we will have about 10 people at the house.  Then we get ready for Mayo Monday morning.

I will be mainlining caffeine over the next four days.  Well, not Monday since I cannot have anything after midnight.  So over the next four days I will be seeing 3 doctors, get to take a medicine induced nap. singing about 35-40 rock songs at a bar over a four hour period, watching dozens of robots throw big red balls and cheering for ours to win, driving to and from Prior Lake/Cottage Grove and Victoria/Cottage Grove during the same day and cooking an entire thanksgiving dinner for 10.  Not to mention I have the basics of laundry, cleaning, dusting and teaching my kid to drive.  At some point I think I have planned sleep.  Guess this SuperMom is going to have to put on her Wonder Woman wrist bands and power through.

Caring Bridge Comments

Joan Gilmore|Nov 24, 2014 8:07am
Safe Travels today and Hope you love your doctors. Praying for all good things.