January comes and Goes

Since the new year began,  I have been feeling unbelievably better. I hope I do't jinx this, but that is the truth. I am eating pretty normally, sleeping pretty well,  and have begun a "live Strong" exercise program at the local Y.  They put together  a group of 9 people and we meet twice a week.  It is a hoot as it a very diverse group!  I feel I am getting stronger.   - Although we are taking care of a  friend's Black Lab who has me Beat.    Chopin !!   for those of you who remember Beethoven!



I was fortunate to spend five days in Steamboat visiting with Tyler, Jamie and Karen Harrison and Walter Freedman.  Nostalgia ran through me as I remembered all the great family times we were lucky enough to share.   The divergent paths we follow and ho w important it is (at least to me) to pause and reflect - and realize how much i have to be grateful for-and each new day is a gift to cherish.

 On the medical front we have some logistical decisions to make.  My Oncologist Dr. Rathmann, is leaving his practice.  of . course this is distressing because together we have been quite successful!   I will miss him.  We meet next week for the last time and will discuss my next moves.   Hartford is 30 minutes away and Springfield has reportedly equally as good Docs...  but...  My next move for treatment might very well be out of Boston,  Mass General.  Boston is even farther than Springfield.  It's time to gather information and make the decision.  I can only hope it goes smoothly.  It is a little anxiety provoking.

I am looking forward to another weekend with John (brother) and Rin.  Our destination is Pittsburg!  Haven't been there for a while and Dr. John has never - we will no doubt be well fed and amused.

I am getting to spend a couple of mornings each week with William and watch his incredible progress -  It's probably not so incredible to those of you who have Grand children,  but as this is my only one,  each day is a miracle with new discoveries.  How can I help but be Happy!

Thanks for thinking about me and taking the time to read this.  I hope to be a more regular blogger, but it's wonderful to report there is nothing but joy to report!!

Happy new year to us all - as it seems to be speeding by.

Jan

Happy New Year

Since you are reading this, it means WE MADE IT!  There were many times during 2018 I didn't think I would, or even that I had the strength to.  But,  here I am feeling pretty darn good.  It's been a while since I wrote and I have been getting inquiries about my silence.   I apologize for any angst caused, there are times i just don't want to share..  But I am here and well today.  Celebrate with me the milestone of a new year. When I look back on the last three, I am amazed to be here.  I didn't think I'd see 2000 when I was 6 years old and realized how very old I would be by then  - will wonders never cease?


Over the summer,  we had the victorian house painted 7 NEW colors which took every bit of good weather the summer had to offer.  Reaching November and getting back to the wrap around porch,  I realized I had NOT planted any daffodils!  In a panic, I planted 20 in almost frozen ground hopefully anticipating Spring. It's not the same, but I am planning on buying potted forced ones next Spring if  have to!

William with his First Birthday present(s) from Grannie!

It is now two months since William's first birthday.  Mostly, I have been getting stronger and have just signed up the LiveStrong program at the YMCA.  It's a strength building and support program for Cancer patients - hopefully the regiment and camaraderie will keep me motivated during the cold winter months.  I have been isolating myself more than I should and hope this will help.

John and I have concentrated pretty much on our own families and staying close to home.  We have also enjoyed helping Sue and Tom taking care of Fifer - Their Golden Doodle, for which I consider Gracie as the catalyst for her adoption.  She helps fulfill my need for a dog.

Ear troubles have continued to be a bother, both on the balance side but also hearing conversations.  Hearing aids helped some, but between glasses and the wig, my ears outer ear is getting too much attention where my inner ear is where the problem is. I have also been dealing with the feeling of water in my inner ear that  doesn't drain or go away.  Just clicks from one side to the other.  I believe this has affected by balance.  The fear of  falling has been huge.  One question the doctors ask each time I go in is,  "Have you fallen?"  I don't want to have to say yes.  Another question they have asked is about Migraine headaches - to which I have also have been able to respond negatively and wonder why they ask.

 Last Friday it all broke out in a lot of pain to my head.  Is this the Migraine that they were expecting ever since the brain radiation?  I couldn't answer "NO" the next time I was asked.   I had a PET scan appointment already scheduled and a I felt an MRI would be an important thing to have done as well - fearing the outcome but feeling the need to know.  John was with me so I didn't want to tell the boys or anyone.  John and I would hear the news and react as calmly as we could,  when we had the facts.  After the pet scan we went to oncology because i needed and unscheduled visit to my doctor.  We got in and after much discussion an  was ordered.... a tedious, fearful wait, then a 40 minute noisy MRI then back to oncology to wait.    When the doctor came in, the look of doom that had been on her face wasn't there!  Yes, serious, but not the brain issues we feared.  I had an ear infection - more painful than ever as it had progressed - but heavy amoxicillin and other scripts and I am on the mend!!  The ringing has subsided as have the "bubbles" in my ears

(like having water in your ears -which had been going on for months) has subsided.  What a relief.  And I am cleared on the PET SCAN and MRI.

Between ear and stomach issues which were the downsides of the last two months,  John and I have been able to steal precious moments enjoying the many blessings of family as well as of having each other.  In November we had an amazing trip to Costa Rica.   Very relaxing - we staid in the Rain Forest . Nayara Resort and didn't venture too far.  Beautiful and perfect for what we were looking for.  I still pinch myself to realize how lucky I am to have him in my life.

A private romantic dinner on ourr first night.  Only one table for two!

Bring on the new year - and I will celebrate life each day!  i encourage you to do the same.   And stay in touch.

And to have YOU and YOUR interest in my staying alive and vibrant.  Thank for taking the time to keep up.  Drop me a line and let me know how YOU are doing.  Friendship is a two way street.

Happy New Year,

Jan

Busy Weekend - back to normal?

 I am feeling so much better since Tyler and Jamie's wedding.  John and I spent a week at Raquette Lake and experimented with the timing and amount of pill popping I needed to do to maintain some form of equilibrium in my stomach and my brain.  Having no other stressors around,  I could concentrate on reactions and do some changing up.  We are still adjusting meds but we have most of it under control - at least for now!


I have been needlepointing, knitting and painting - getting back to using my hands in a more defined manner that wasn't easy when they were shaking.  Typing is still a little shakey - which might affect the frequency of blogging... but here I am!  I am also trying to get back into pickleball, but that too has been affected - reflex time is slower as well as vision.  But I am working on it.

This past weekend we celebrated William's first birthday,  Dr. John's birthday and had a mini GA reunion dinner and a Brunch with friends from Chicago and Steamboat!  Exhausting but I enjoyed it all.  Here are a few pictures!

William and his Radio Flyer on his B'day!

Katharine Ann and William
 at his Birthday party

Angie, Cathy and me with Jim and TJ

As you can see,  I am improving from the brain radiation still.  I am very grateful for every day and every friend I have.  It is good to hear from each of you.  As I am feeling better,  I am getting better about responding.

Congratulations to Tyler and Jamie

 Last weekend in Ogunquit. Maine Tyler Anderson and Jamie Welch got Married!!!!  It was a beautiful weekend on the coast.  Tyler rented a house on the shore that housed most of the two families for three days.    Tyler and Jamie planned to get married summer 2019, but with my diagnosis, they moved it up!!!  Sweet but scary.  There were times this summer where I just focused on being able to make it til September 15th.

I DID make it and am feeling better than ever.  So happy for Tyler and Jamie as they make it official.  It was a great family reunion again!  I am so happy to have Jamie in out family.  She is a beautiful lady, inside and out.  She and Tyler are so right for each other.  couldn't be better.

Here are some photos I want to share, although these are from a small sampling,  I wanted to share the good news with all of your,  

Jamie and the boys
David, Will, Tyler and John

Me with William KA and Will

me and my boys
John, David, Tyler and Will


I hope to post a couple more when we get them.

A DIFFICULT SUMMER

Tyler arrived the day after the brain diagnosis

It’s been a crazy summer. Since the discovery of the spread of the cancer,  we have alternated between retreats  to the Adirondacks and Doctors appointments. My time has been concentrated on family, both mine and John's.  I have had little energy to spend with the friends that have supported me thus far, and who I treasure.  I have truthfully felt that I have not been the best of company.  Frequent naps have helped me through these times. 

Davey a few weeks later to see me and his nephew William

With the realization of   changes in my condition,  the boys   have been visiting and spending wonderful time with me.  It has been exhausting as I have not felt like myself for the passed two months.  Not to mention frightening.  Combine this with  over 20 days planned with the DeWeese family for reunioning around a wedding as well as at Raquette Lake,  my energy was zapped.  I felt I only had the strength to deal with family - and not very well at that.  All the various medications,  combined with the strong, intense radiation left me quite nauseous and quite dizzy.  Only in the last few days can i truly say i feel like myself.  I hope it will last.

John enjoying lobster on our visit to Boston

Will, William and
KA joined us at the lake along with Tyler an Jamie

John Anderson also sneaked out from Boston a couple of times and we visited him in Boston - so all four made their love felt!  5 including John D.

John took me for two nights to "The Point" - a marvelous secluded Adirondack retreat for recuperation - skinny legs and a wig-hat!

Tomorrow I have an appointment at Mass General in Boston to see what the options are from here and if any sound feasible to me and John.  We remain hopeful,  although this new brain stuff is a game changer.  It has removed some of the options that had been on the table and we are getting into more uncharted water.  With renewed strength of the moment,  I am becoming more positive and hopeful.  Again,  we will be taking this in small steps with milestones to keep me going.   I realize how blessed I am with those that share this journey with me.

UPDATE - research continues with a new drug for the ROS 1 gene treatment of my type of  cancer with a search to find something affective not only on the lungs but also for the spreading to the brain which is what I am facing.  There is another option of treatment available.  There are many "Possible" side effects with this and the recommendation is to continue the   treatment I have been on until something changes.  They will monitor more closely for changes - more frequently.  It is great news that there is a next option!  I am staying strong as a lot of my energy has returned and the nausea has subsided some. 

Moving forward

 Six weeks later.... after two weeks of brain radiation and four weeks of recovering from that,  The MRI reported back that the radiation did what it was supposed to do. The lesions are not growing they have actually shrunk and seem to be stable.   Hopefully they will remain that way for a long time!  And for today things are still improving.  I feel I can start making some plans for the next month at least.

I have kind of gone underground during this period of time and John and I have a lot of time up at the lake.  We have concentrated our time with different families. Most of my strength has been dedicated to family And recovery. We have returned home basically for doctors appointments and color selection on the House.  ( There is a crew at the house working diligently to repaint it !  New colors...at least 5!)

 I am at the lake right now and limited in what I can put into the blog so I will sign off and resume more when I get home .    Thanks for your concern and support .

Thank you for your thoughts

Thank you for your thoughts, I am having difficulty communicating but truly appreciate your sincerity . Typing texting not working too well at this moment but will hopefully recovery soon . I feel like I have aged 10 years in a week I am unstable on my feet and turned into a drop things from my right hand . They say this is the result of the brain lesions and the radiation treatments be patient with me and know that I love you and appreciate your support . Your kind words mean a lot to me