Words

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Words  are such a blessing. They can encourage, inspire, comfort, guide, and educate. (Let’s stick with the positive ones.)

Authors and song writers open their hearts and become vulnerable because they have a passion to share their thoughts.The ideas they share can be life changers and make us feel like we are not alone.

On our trip to Mayo, the head hematologist used the word hope twice during our consultation. That word electrified me. We hadn’t heard that used by a caregiver for way too long. He said the goal would be to make Doug feel better in six months and surely in a year. If not there were some other options. I know we can’t hold him to that, but it sure sounded wonderful.  There have been no timelines discussed in our marathon without a finish line. It didn’t hurt to place that in our minds. Uncertainty is a killer of hope and at least we had something now.

I question the doc’s mention of the word hockey.  There seems too be many roadblocks to that dream, but if Doug could skate and participate in stick time (an open skate where hockey players can practice their skills), he would be happy with that.

So though not much has changed in his treatment except maybe a clearer, more assertive plan of what has been suggested by our home docs, those two words have been an elixir. I can imagine a healthy husband and renewed chances to enjoy some of the activities that are only a memory now. What a blessing on the journey.

Can Hope Survive?

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I sit at the deathbed of hope, her breathing barely noticeable
If she dies, will I die too?

Remembering all the times she’s pulled me through
I grasp her hands and beg her to fight.

Hope opens her eyes and smiles. “I was just resting.”

With all the ups and downs of our journey through Doug’s illness, I feel like I have been at Hope’s Deathbed many times – sometimes many times in one day. That pattern continued during our visit to Mayo. Reversals from high hopes to deep despair keep me from sharing news with loved ones. By the time my message is completed, the situation has changed. It doesn’t seem fair to share whiplash like that with people I care about.

Our travel day on Sunday felt like the road trips we used to take. We were so full of hope, we laughed and talked and almost forgot the reason for our six hour drive to Rochester.

Doug thrives on action, waiting is painful. Finally present at Mayo with an appointment the following morning, after the  long process to score an appointment lifted both our spirits higher than they’d been in a long time.

Though there was more waiting to come, the doctors we saw were exceptionally competent, caring and decisive. They spent lots of time with us, thoroughly examining Doug and acting as though he was the only patient they had to see that day. They ordered tests and made referrals to experts in the other disciplines that could possibly help Doug. They turned over lots of rocks as Doug likes to say. They promised no magic bullets, blessed much of the care Doug was already receiving but also tweaked current treatments and offered others.

As many appointments as possible were squeezed in, since we, like many of the other patients traveled considerable distances to be there. They have a system called checking in which patients who have six appointments in one day can go to the various labs or docs and check in to see if time is available. We had very good luck being checkers and ticked off six visits in one day. We had one day to rest at our hotel, lots of reading and I was able to do quite a bit of writing.  We discovered good local restaurants and enjoyed our relaxed time together.

After a week, it was finally time to go home. More waiting – for lab results and for the Mayo docs to consult with our home KU docs. We were hoping they would work well together and a seamless relationship between the two would enhance Doug’s treatment plan.

Unfortunately, we came back with many questions and more challenges to understand Doug’s complicated disease and treatment process, but we  felt so blessed to add these incredible doctors to our team.

 

Mayo Blessings Small and Large

IMG_0934 Since I’ve written about peanut butter sandwiches, I should explain Mayo refers to the famous Mayo Clinic in Rochester Minnesota, not mayonnaise.

Doug and I spent last week there. We came as many others do seeking hope for difficult medical problems at the clinic.  So much has happened, I’m loaded with fodder  for several blogs.

I’ll start with the small blessings and move up. How’s that for keeping you in suspense and anxious to read  future blogs?

Small blessings  at the hotel – Hampton Inn South – created a home away from home for us during our five day stay.  I’ve got a theory there’s something in Rochester’s water that makes people kind, compassionate and welcoming.

The staff at the receptionist desk smiled and asked “Can I do anything for you? or How are you? How’s your husband? Do you get to go home today” each time I passed the desk, many times a day. I got the feeling they meant it. They kept the large newly remodeled lounge spotless and ensured that  hot drinks, cold water and fruit were available 24/7.

A large varied breakfast was complimentary and available from 6 am to 10 am. The staff is well aware that probably 95% of  their guests during the week are patients seeking hope and help at Mayo. I’ve seen the pantry open well passed that for those who sleep in or take extra time for morning routines. Many customers leave for tests and procedures by 6 am. For them brown bag breakfasts are ready for grab and go or they might slip in for a late breakfast after they return from early morning appointments.

A free shuttle manned by drivers who drink liberally from the water leaves the hotel for the clinic every thirty minutes on the hour and half hour and circles back to the hotel after the ten minute trip. They’ll fill you in on the town and its awesome medical capacity, their grandchildren or drive quietly if that’s what you want. The shuttle will also take you to a restaurant in the evening or drop you at Walgreens to fill a prescription. The driver is on call until 7:40 pm. For someone like me who hates to drive in a place I don’t know, a huge burden of stress is removed. Gone is the fear of getting lost or figuring out where to park.

After a long day at the clinic, the shuttle brings you home to  free hot soup, oyster and assorted other crackers and bread if you don’t feel like going out. Their loaded potato soup is amazing. Makes me smile and remember going home when my Mom was still around.

IMG_0932This picture shows two of many valets available to help you in any way they can as if it were a fancy hotel. Large numbers of wheelchairs lined up in front are reminders of the true purpose of the building.  More about the facility next week.

Decisions Decisions Decisions

crossroadsLast week’s writers conference was amazing. Not only did I get inspired and educated, but chance meetings provided answers and offered opportunities I never expected.

My friend and I were discussing whether or not we could deduct the cost of this conference and other writing related expenses, given we had not produced any revenue. A gentleman standing behind us in the lunch line overheard our dilemma and politely interrupted. He armed us with information to take to our accountants and look up on the web. I was so grateful. Facts we’d wondered about for years, were suddenly there in front of us.

That evening after the conference agenda was complete, we chatted with several published authors, aspiring authors like ourselves and, as it turned out an agent and an editor. Strangers soon became friends.  We laughed and told stories loud enough to attract more and more creative souls to our large round table. I spoke briefly with a lady I recognized from a previous conference. She was an editor for a small publishing house.

The next day, I decided to get some questions answered. I’m getting much braver about talking to the big shots at these events. One of the main purposes is networking. Not a place to be shy. The editor from last night appeared to be approachable. If she was busy, so be it. I had nothing to lose. I marched up to her and she was kind, friendly and most surprising of all, asked me to send her my manuscript – the whole thing along with a synopsis. In today’s competitive publishing world, that’s pretty rare and straightforward.  My mouth hung open and then I thanked her, asked more questions and felt like my dreams were possible.

Linda was talking to another lady who was hovering nearby while I continued to quiz the accommodating editor. As we walked away,this lady, another editor, handed me a card and said, “We’re looking for new authors too. Please send me your story.”  What? I had to pinch myself to find out if this was real.

We make a million little decisions every day, but they can land us in a completely different spot. What if I’d decided to skip this conference? What if I decided  to go home immediately after the conference rather than socializing? What if I decided it would be too intimidating to engage that editor?

I’m committed to considering my decisions with more courage, the big ones and the small ones.