Monday, Monday! (Bubbles & More!)

Yes...

Jim gets to take a bubble bath every day for his dry skin... (he sheds about a pound a day of dry skin (not really). Tarceva causes the skin cells to "shed".....

We had to call the carpenter after this picture was taken, (really!).  He fainted after standing and fortunately he was holding on to the wall railing... unfortunately, he held on to it while falling back into the bubbles and the fiberglass wall and hand support went with him!!! (really) Good news no broken bones or bruises and all the dry skin fell off....
Now.... we have decided that massages with oil will do for now!!!

Off to Springfield this morning for Zometa infusion and lunch at Olive Garden, (thanks Francie & Rick!)



Blessings....

Angels watching over Jim!

Francie, Trish and Marikay & Sharron!

XO Karron, Jim & Butterscotch

Thoughts About March, 2011

Now that it is April.... yea... Jim and I feel we can take a deep breath and share our "March Stories".

Blogging the first few days of March was a struggle... so... I decided to wait until our lives became a little more normal to continue to share my thoughts..

We made 4 long trips to Barnes in as many weeks for tests, procedures and consultations... Our trips to St. Louis eased somewhat by staying in the hotel which is attached to Barnes and Washington Univ.

I will share the good news first....

After the final CT series our oncologist said, "We really can see only the changes from radiation and chemo in your lungs and cannot see the tumor previously seen in your left chest!"

Wow... after our adventure to the Trauma ER following Jim's fall after midnight from the bed, a broken nose, slightly injured cervical spine, 2 panic attacks requiring medical intervention and many, many MRI's taken of head, back and neck this was WONDERFUL NEWS!.

We were so stunned that we forgot to ask many of our questions that we prepared during the week....

(All of our questions were answered later by phone...)

This good news was reaffirmed by Dr. Dasi in Springfield this Tuesday....

Waking up the next morning we still were unable to put our emotions into words.... Jim still has no vision and will need additional radiation to his back tumor... but...we are soooooo pleased!

We enjoyed meals from Applebee's and Panara Bread and celebrated with orange sodas and cookies!

Blessings!.....

Prayers for Jim's health...

Gift cards from Francie, Marikay, Trish and Debbie...

Visits with our dog, Butter, in St. Louis, thanks to Denny and his family....
Joe and family for bringing communion to Jim...

Supportive messages and calls while we were struggling to keep on schedule for all the tests and radiation....

"Special" hotel rates for Barnes patients and family... & for the great up-grade on the room for a week...

Mass at the Cathedral...

Hotel manager & his doggy!

Reflection on a Busy Week!

Finally having some time to reflect on this past week, I will take some additional time to blog about this week's activities and the many blessings received....
Starting out Monday afternoon in a rental RV, Jim asked to "drop by the Shrine to the Lady of the Snows in Belleville....

As we drove through Springfield, we cancelled our appointment with our local oncologist and just kept driving toward St. Louis with Jim sleeping on a king-sized bed in the back of the RV. (Butter snuggled him the whole way!) Arriving just before 5pm, the sun was already beginning to set,  we asked about available rooms in the hotel... as it turned out, there were many rooms available.... Jim was scheduled for appointments on Wednesday and Thursday at Barnes and this seemed like a very good thing to do... he slept all evening and into the next morning before I finally got him up to eat...

He told me that the RV felt like a "box" and he did not want to get back into it.... so.... his friend, Denny came on Tuesday night and returned with our car and took the RV, (with our poodle, Butter) home...
His appointment with the radiation-onologist went well, and we will be returning this coming Tuesday for his "fitting" of the device he will be in for the procedure for his radio-surgery of his spinal tumor....
This is very good news... The Gamma Knife/radio-surgery is usually used for inoperable brain tumors and the physician we had our appointment with is beginning to use this for other areas in the body...
After our visit with the neuro-opthomologist, we are hopeful that detailed MRI's of his eyes will provide information which will allow Jim to proceed with interventions to retain some sight in his right eye.
All three physicans have co-ordinated his tests and procedures for this Tuesday morning!!

If the simulation procedure goes as planned, he will have the radio-surgery on Friday...

God has blessed us with so many good, caring people!
The message at the Mass on Wednesday.... Christ who healed the blind man!!!!!

***Blessings

*Denny, who drove 4 hours to return the RV and deliver our Honda!
*Shrine Hotel manager who discounted our room!

*Prayers from all our family, friends and from our church!

Our St. Louis Visit....

It's Sunday night and I find myself reviewing everything we were told during Jim's oncology appointment at Washington University/Barnes' Center for Advanced Medicine....

The news was not bad... the physician was "delighted" to know Jim has survived for this long... He told Jim, "Most of my patients with your kind of lung cancer would not be here today talking with me.." He was pleased with his treatment with Alimta and Tarceva.

We were relieved to know that appointments were being arranged for this coming week for his vision and for his tumor on the thoracic spine. Each specialist, a radiation oncologist and a neuro-oncologist will evaluate him on Thursday. The Parkway hotel is connected by a sky-walk!

Tomorrow, Monday, we will keep the appointment with Dr. Disai at the Cancer Center in Springfield to officially co-ordinate his treatment and future care...

We have so many questions still, but the weight loss and decreased vision worry both of us.

Blessings....

Great, loving neighbors, Bonnie and Denny & family who brought wonderful deserts to our home tonight!

Karron

Wishing That Things Were Diffirent!

Watching Jim receive special recognition for IC's fund raising efforts last week, I couldn't stop crying...
I was not crying because of this award and visit from his friends and co-workers at the college...
The tears were from wishing that we could go back to the days when he was the one visiting college friends, family and contributors..usually for a newpaper release or magazine article...
His vision is almost gone now, so he no longer is able to enjoy his camera or use his computer for writing the stories..
I remember the days and many, many weekends that he rushed to the newspaper "before deadline!" with his new story or picture of college students after one of "the biggest game of the year" in his old rusted out VW.... (Of course, this was before digital cameras and e-mail!!)

Today while he was receiving the card and medal from them, he kept asking, "Did you get a good picture of this?"

Yes... Alot of good pictures, even one with Butter in it...

I just wish he could see them...
Karron

Planning, Planning, Planning

Well... Jim walked today outside with friends Denny & Chris!
What a beautiful day... just a little cloudy, but warm.

This week we have several appointments to schedule home sitters and arranging follow-up appointments for Jim, plus leaving for St. Louis to meet with Dr. Goviden, an oncologist who specializes in Jim's type of tumor.

Then...
I will go back to work on Feb. 28th!!! I'm so hopeful that the home sitters and companions will be enough for Jim... (neither of us are ready for the home hospice nurses to come....)

Karron

A Good Day!

Jim had a very good day yesterday and we even worked in a pedicure for him after all the appointments!

As a reward.... we took Bob Evans Blueberry Crepes home!!

Our bags are packed just in case we need to go to the hospital...

Karron

Yea... Now I have a good book to read while Jim is at the doctor's!

It's a good day for Desi too!

Update...

Will will see Dr. Govindan next week in St. Louis...

Tomorrow we need to see Dr. Desai in Springfield.. I'm not sure why, maybe to keep him stable...

If we have problems prior to this, we will leave right away for Barnes, but if not, we will "hang on"....

To our family & friends we want to say thanks so very much for the prayers!

Jim & Karron

Sunny Wednesday...

I wish we were on our way to Barnes today... the sun is shinning and it is about 40 degrees...

Making calls today, but I am not hopeful...

Last night Jim said while eating dinner, "We need to lease a RV and go to Florida.. we can't keep having days like this!"....

Yesterday he was very tired and needed more help than usual...

This morning, however, he looks stronger, so..... I'm thinking about taking him down to St. Louis early and just waiting by their door!!!!(really)

Our Springfield oncologist was to arrange another scan and contact the radiologist at Memorial...but... no word from them either after many calls to the office.... humm....

Life is too short to keep waiting, and waiting for things to happen...

I will discontinue Jim's phone today if he will let me... so far the vision thing is just frustrating him when he tries to call any one or answer the phone...

He amazes me at times though.... he can remember dates of appointments he made months ago, and also recall the number of t.v. stations like CNN, FOX, and the movie channel when I have no clue....

Murphy's Household Trials & Tribulations

Well,

This week while we have been waiting to go to St. Louis, I have desperately tried to save money by doing my household chores and cutting back again on the Fancy Feast for the kittens... (also the out-door kitty named Rusty (by Jim) & Gutter-Boy (by me)...

 Tips and other things that really I shouldn't include in my blog, but oh well...

*Do not use husband's toothbrush to clean the little places around the faucet!(You guessed it, Jim brushed his teeth with it instead of the electric brush...)

*Do not use hair spray to clean the sink and tub...

(To save time, I was spraying my hair and cleaning the sink with Scrubbing Bubbles, and again you guessed it, I sprayed the hair spray on the sink and counter and the SB went on my nice clean hair...)

*Do not, I repeat, do not try to use Tub & Tile Spray to clean the garbage disposal while it is running.... (I'm ordering new contacts as we speak...)

*Limit trips to post office and Goodwill when thinking of other things..(I won't even try to explain this one...but just a hint... the boxes do look a little alike, right?)

*Keep the kittens fed!  (Dead things are on our front porch and they are climbing the bird cage for Milo!)

(To be continued...)

Now it is 4pm and I must call St. Louis... The sooner we get on the way, the better...

We may not have a home to come back to.. (just kidding).

Karron
Just a note to those of you who wish to clean your oven... DISMANTLE THE SMOKE ALARM

Also, kittens vomit all the dead stuff when they are back in bed or on the living room carpet... (no pictures will be sent.. use your imagination!

Oh... why do we always have so much trash compared to our neighbor, Bonnie? (Today is trash day.. yea.)



Bonnie's trash....

Murphy's Trash....................

Packed and Ready to Go!

Packed and Ready to Go! ???

As we wait for our St. Louis trip to see an oncologist who specializes in lung tumors, (ESGR NSLC), our bags remain in the living room and ready to go!

I presume that I will need to be off work this week, (in addition to last week), waiting to go to St. Louis and then  to meet with home health nurses to assess for physical therapy and hospice care if and when needed.

Jim needs quite a lot of help to walk with his walker, and even to see the food on his plate. (It is good that he is wanting to eat, but not so good that the food will not stay on his fork!)

He called me in to the dining room where he was doing a great job eating lunch and said, "this tool I am eating with is very dangerous... I think it may kill me!"..... It was a fork from the newer collection in the drawer, and it did indeed have very long prongs!

Love to our family & supportive friends!

 Karron & Jim

Oh... while I was writing this, Jim hit the T.V.  remote to "Nude Mothers Doing Nasty"!  (Yes... I took the control away and  we are watching CNN..... he blamed it on his poor vision...lol.)

Waiting, Waiting, Waiting!!

Last week was so very long...
Jim was in the hospital Friday, Feb. 4th-Feb 9th due to leg weakness and disorientation..
He is walking much better now and even though he does not see "little people", he is losing vision in his right eye now and needs help to identify objects and help to walk around the house with his new walker...

We have been referred to a specialist in St. Louis for possible research medication...

On Thursday he received his Zometa but not the chemotherapy agent, Alimta. (Tarceva continues)

We have asked to be admitted to Barnes if and when he needs more tests or surgery, and are hopeful that our insurance will pay for this....

While a patient at Memorial Medical Center in Springfield, he received physical therapy and occupational therapy to help him adjust to his imbalance and loss of vision.  Last night he fell in the study and now has pain along his left chest wall... (he wants me to wrap the heating pad around him and hold it in place with ace wrap!.. not going to happen)
When I told him I wouldn't use the ace wrap around his chest he said, "I'll just ask Denny to do it!"

Now diagnosed with an enlarging spinal tumor, he is taking Decadron to reduce swelling and pressure.
It appears that the Decadron has helped him regain leg strength and balance enough to navigate through our little house with the wheeled walker and sometimes with my help.

Waiting to go to St. Louis is difficult...
I want to go to work...
Jim wants to be "left alone" at the house
& the dog wants his peaceful home back!!!!!!  (just kidding)

What wonderful support we have received from MMC where I work...

Jim is not looking forward to going to Barnes even for a short stay.. he told me and the nurses, "Now I know everyone, and I feel better at Memorial!

Falling, Falling, Falling

We will be going to Springfield for CT scans today...

Last night Jim had a big tumble and hit his head on the coffee table...
Now it looks like he was in a fight and was not the winner!

We will attempt to have additional lab work done while we are at the hospital...
I think he may be dehydrated from the chemotherapy....

"In moments of discouragement, defeat, or even despair, there are always certain things to cling to. Little things usually: remembered laughter, the face of a sleeping child, a tree in the wind-in fact, any reminder of something deeply felt or dearly loved. No man is so poor as not to have many of these small candles. When they are lighted, darkness goes away-and a touch of wonder remains.”

Many prayers have been sent our way....



Karron

TRAPPED BY SNOW!

Jim & I have been "trapped" by the snow for 2 days...
We cannot wait to have a chance to go outside...
So far, I have missed every day this week at work, Mon, Tues. & today, Wed.....

Jim's appointment for his re-staging CT has been changed to this Friday & we are anticipating good news...

The Chemo Brain  effects are back again, but clearing...
Some days his vision is a little better and he can see light from his left eye...




Blessings:

**The new walker is almost ready...

**The bath chair has been used once...

**The new generator is filled  and ready to go, as soon as the snow is brushed away from all the gauges and starter button....

God Bless everyone who continues to pray for Jim's health...
Karron

update;;; final snow total in Jacksonville/ 12 inches!!

Ben Franklin in Our Living Room!

Yes...

Jim's vision loss is creating problems.... really...
(Most of these problems, I think, is due to last Friday's chemotherapy of Alimta, but having blurry vision is not helping at all!)

Last night he could not sleep even with both of his eyes covered..

Coming back to the living room, he said, "what is Ben Franklin doing sitting there in the rocker!"

At first I thought he was kidding me, then I did a delirium assessment, just partial, and yes... he did believe that in the room with him sat Ben Franklin.

Later, he saw an old woman dancing, sticks on the floor and "little people" moving in the front room...

His gait is so unsteady, if I don't use a gait belt, he just goes down to the floor..
He missed his IV Zometa in Springfield today... Debbie came to the door to get him, but he was unable to shower and dress for the appointment.

It has been over 24 hours now, and at brief times, things are better.
His speech is clear, no facial drooping or upper extremity weakness, so.... I think the Ambien CR will be put on hold and I have covered his left eye for now...

I tried the "Murphy" way of laughing at this situation, but it only made him angry...

Now, even though he is better, he still sees movement in most objects that are on the table or wall....

He just told me, "At least I am entertaining!".

I have played so much Farmville, that my fingers hurt...
I even made lists for next week, appointments, meals and things to have repaired, cleaned and donated...

Looks like it will be another long night..
He tried to use his cell phone and did not call the right person,,, I'll just put it in the drawer for now..

He was not able to microwave or turn the DVD on, but he couldn't do that any way... (just kidding)

I pray that all this is just temporary, and the "little people" will find another home to visit!

Today (John Denver) -My Tribute to John Denver

Preparing for the GAME!

While eating dinner tonight Jim said, "I think we should go somewhere tomorrow!"

I knew there was more to this story....

Finally he told me, "I don't think I can survive the game tomorrow!!!"

I don't have a problem with this, but I just think I will need time alone at TJMaxx.....(really)

Chemotherapy was yesterday, and by Monday he will be cranky and sick, sooo... I think we will watch the game tomorrow together, just in case he needs a nurse... (not really)

What To Do.... More Snow....

Yes..

I thought the day would never come that I was afraid to drive on the highway at 5am....
(For the past several years I have been spoiled by keeping a small apartment in Springfield near the hospital.)

We have snow, and it is still snowing some.. so... I will wait until the sun is up to re-evaluate the driving conditions...
Boots are ready..
Hooded coat ready..
Bags are packed...
Now all I need is a sled!

What to do???

Clean and dust the house?  (maybe)
Nap..... (of course)
Play FV... (of course)
Do laundry?  (maybe)
Shovel snow  (not)

Sprinkle de-ice stuff on walkway.. (maybe)
Pay bills... (maybe)
Clean the kitty pan in basement....(not)
Collect "stuff" for Salvation Army?? (need to, but maybe not today)
Wash the poodle? (need to, but maybe not today)

Enjoy Jim's company??  YES!

Karron

(I guess I am open for suggestions on how to keep busy and productive today, if I still am home bound in a couple of hours...)

New Treatment Plan!!!!

Well...

Arriving at Dr. Esplin's office today, we immediately "sensed" something different....

A new Oncologist came into the room and announced..

"Dr. Esplin is on medical leave and I am your new doctor!"
Wow....
I cannot put into words what it felt like to me, and I will not describe the look on Jim's face for fear of not completely sharing the whole picture....

The new treatment plan will include Tarveca...
We have asked every at every appointment about this new drug to treat Jim's rare form of lung cancer......

Tomorrow he will have another IV chemotherapy, Alimta, and we will receive the oral chemotherapy by mail in a few weeks...

I will write more later...
I have to recover from all this news... We are hopeful, but a little afraid of this new plan for his care so suddenly decided for us...
Keep us in your thoughts and prayers....

Karron

(and.... not only is Jim's hair white.... it is curly!)

New White Hair!

I must share this story...

Last week I was feeling sorry for myself, (yes, again), and I automatically went to the front room and on the dining room table where Jim had placed the mail, there was a letter from Memorial Medical Center....

Yes, again I thought it was a dreaded letter that warned me of the hours I had left for FML.....

To my amazement, the letter explained that more hours have been given to us from my co-workers!

There is no way I can explain or share the joy of receiving this news!

After Jim and I cried together, we prayed for our friends at Memorial, knowing each one face challenges and many hardships too this winter....

It is this kindness that helps us face each new day with renewed hope and gives us strength to continue with our struggle to "beat the odds"!

Jim is getting a lot of white hair now!  Before long he may have to have an appointment for styling! (not really)

Feeling good last week, Jim had lunch at Applebees with friends... yea!

This coming week he has an appointment with Dr. Esplin and then chemotherapy on Thursday...

His vision has not improved, but then again, it has not gotten worse and the right eye has not changed at all...

Other than making the computer print a smidgen larger... we haven't had to make any other changes due to his loss of eyesight on the left.

****So many blessings this week!

Denny, who took Jim to Dr. Oden's appointment and made notes for me...
Debbie, who took Jim to Springfield for an appointment!

Denny and Adam, who shoveled so much snow!

Many friends and family who continue to pray for Jim and for his recovery!

SNOW... SNOW... SNOW

SNOW IS COVERING OUR FRONT YARD... VERY DEEP... (WELL SORT OF..)

I was home today, (Tuesday), with Jim....

Yesterday the results of the eye exam were not encouraging... but there still is some hope that his vision will return in the future even without treatment...

His records are on their way to a neuro-ophthalmologist at Univ. of California, San Diego...

If the optic nerve is damaged from previous radiation, there may not be much that can be done, even though some research shows some promising results with hyperbaric treatments....



K.

Asking for Prayers!

This morning Jim is going to the ophthalmologist.

His vision has not improved much...

We would like to ask for prayers for his vision to return and not affect the right eye...

Francie has been in touch with a neuro-ophthalmologist at UCSD.....

I will be sending the information later today to their office..

Thanks to our friends and family for the continued prayers!

Karron

Jim is "over" the side-effects from last week's chemotherapy!!

Please pray for the family of Angela Wakefield Millsaps
Angela was a victim of domestic violence... her mother was my classmate in high school...

Biopsy Tomorrow!!

Jim will be having a temporal artery biopsy to see if the artery that supplies the left optic nerve has inflammation.. Now he sees nothing from the left eye....

The right eye, so far, is not affected.  If the biopsy tomorrow is positive for inflammation, he will receive high doses of steroids for a while and there will be some hope that his vision will return!!

We know from the previous tests that there is not a blood clot there (a good thing), and the retina is not torn, (another good thing), but the doctors are "stumped" about the cause of the rapid loss of vision Monday....(bad)...

We are expecting a "White Christmas" starting tomorrow night!

**Blessings....

Butter & Jim ready to use the new Romba!

**Jim's new toy....

**Beautiful cat under our tree!

We Are Truly Blessed!

We have received so many Christmas cards this year....
Jim has been trying to reply to everyone...

Today his "eye problem" was diagnoised as a "small blood clot" near the retina...

His vision in his left eye is affected, but so far the right eye looks ok..

He will be getting more tests and will see another specialist in 2 weeks...

We are thankful for the vision he has and also for not having any other neuro deficits...

Now... I will post the Christmas cards that Sharron can't wait to see!!