Recovery Updates
Weeks 1-2


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Mom arrived at 5:30am and was taken into surgery at 7:30am; received phone call from O.R. at 9:06am that surgery was officially underway.

Received an update phone call from the O.R. operator at 11:10am.  She could tell us nothing more than "the surgery is still underway."

Since the estimated surgery time was approximately 8 hours, we were shocked to see the surgeon and the head nurse walk into the waiting room at a few minutes after noon.

Although the surgeon quickly conveyed a barrage of quite clinically technical information, following is a general recap of our current understanding:

-  Although the neurosurgeon's job was complete, the other surgeons were still "finishing up" the surgery.

-  The surgery was generally successful and was completed much more quickly than expected as the majority of the tumor was encapsulated, which allowed for an easier removal. 

- There are still some critical outstanding questions/implications that will not fully be answered/assessed for at least several days.


Mom has been moved into an ICU room, but no one has been permitted to see her as yet.


Each of us that is here (Dad, Elisa, Angela, Joe and Crissey) has been in to see mom for a short duration.  While she is heavily sedated, is in obvious discomfort, and definitely appears as if she just had major  brain surgery, she was somewhat responsive (especially to dad), her vital signs are strong, and -- in fact -- the ICU nurse said that, for a patient her age her vital signs are "fabulous."  She has spoken several words and was able to roll to her side.

The next few days will bring important test results and will dictate future treatment.



9:13 am:
Tuesday, November 24th
11:20 am:
12:50 pm:
3:50 pm:
5:56 pm:
Wednesday, November 25th
I just noticed how long it has been since the last update, so apologies for the delay.  As you know, it's easy to lose track of what day/time it is when in an ICU waiting room.

Joyce/mom is recovering very gradually, is very tired and still quite confused.  Yet, she has somehow maintained her trademark good humor despite admittedly being scared.  "If this is all I have to deal with, it's just a 'hill of beans.'" she said.

Thank you for all your comments and prayers.  As some of you have noted, when dealing with brain tumors, there are still many unanswered questions and quite a challenge still ahead.

The surgeon did indicate this morning that the MRI looks good, but cautioned us that these kinds of tumors tend to come back.

It is heartwrenching to see Mom go through all of this.  She remains our hero.  Please know we will pass along all your good wishes when she is up to it.

1:50 pm:
3:00 pm:
Some of you have e-mailed asking for Joyce's mailing address:
Joyce Arnold
1860 Stafford Way
Swansea, IL 62226

Joyce/mom's cognitive abilities showed remarkable improvement throughout the day. Despite her memory/confusion issues -- which we were assured are quite normal just a day after such major brain surgery, she became much more lucid as the day went on.  As she becomes more tired, her memory ebbs and flows, but we are hopeful.

Although she did not have the strength to keep her eyes open for more than a few seconds at a time, or to talk beyond a whisper, she was able to hold relatively coherent conversations with each of us and was visibly uplifted and surprised by the visit from two of her collegiate grandchildren, Kayla and Zachary.

She expressed her dismay that she will be missing her granddaughter, Lindsie's wedding this weekend, but she is keeping her spirits up even as she works to regain her bearings. 
(We all feel so badly for how doubly excruciating this has been on Joyce's daughter, Maria, as she reluctantly heeded our emphatic and adamant advice that mom would want her to stay in Cincinnati as she finalizes preparations for her daughter Lindsie's weekend wedding.)
9:50  pm:
Thursday, November 26th
5:57pm:
Joyce/mom began the day quite confused and with limited memory of the events of yesterday, although her ICU nurse assured us that recovery from such major brain surgery is definitely "one step forward/two steps back."

She is also extremely lethargic and tired; again, understandable, considering being only 48 hours, post-op.

Despite her lethargy and cognitive issues, her vital signs remain UNBELIEVABLY STRONG (one of her nurses said that mom's vital signs were better than HIS) so they have moved her out of ICU into a private room on the same floor.

Her face brightened today when she received a brief visit from two of her siblings. 

Although an immediate family member will be with her 24/7, we are restricting actual "visits," in an effort to get her to rest and regain her strength, which will, hopefully, have a positive impact on her cognition and appetite.

Mom's defiant spirit continues to shine through: when her brother told her good-bye today, she weakly muttered with eyes closed: "I hope the next time you see me, I'm waltzing around the room!"
Friday, November 27th
Joyce/mom's first overnight out of ICU was not at all restful   It seemed as if each time that she would drift off to sleep, someone was coming through the door to check vital signs, administer medication, perform a cognitive assessment, draw blood, or tend to some other issue.  Before we knew it, it was 6am and the attending neurosurgeon was making the rounds.

It was determined that, despite her continued confusion and our challenge in getting her to eat, her vital signs are so strong that they are unable to keep her in the hospital!  A physical/occupational assessment showed, however, that she is nowhere close to being able to go home -- especially since today was the first time she was even helped out of bed for a brief walk to the restroom.

She will be transferred, via ambulance, sometime on Saturday to the rehab facility at St. Elizabeth's Hospital in Belleville where she will be given intensive therapy and will, hopefully, begin to eat sufficiently to regain her strength and cognition.

Tonight -- as an incentive to take successive drinks of her Boost protein drink -- I read her quite a few entries from the messages graciously posted to this web-site.  Although she may not remember them tomorrow, they brought tears to her eyes tonight as she marveled at the fact that "so many people took time from their busy day to send me such nice messages."  She was truly touched and amazed by everyone's kindness, well-wishes, and genuine interest and concern.....

While we continue to anxiously await important test results and the recommended course of treatment -- and are eager to begin to see a more consistent return to improved memory function -- we are so grateful for mom's vitality, resilience, strength, and overall fitness, which allowed her to physically rebound extraordinarily quickly from major brain surgery.  Extraordinary progress from an extraordinary woman......
9:45 pm:
Saturday, November 28th
Joyce/mom was not transferred to the rehab facility today after it was determined that she needs to regain more strength and requires more therapy at the hospital before being able to sustain the rigors of rehabilitation.

She did have several milestones today, however, as she was able to eat it a chair and walk the few steps to the bathroom (albeit with much assistance.)

Though everything is a herculean effort for her, she remains her trademark sunny, gracious and compassionate self, never complaining and thanking each and every medical staff member who tends to her -- in her weakened voice -- even when she is barely conscious.

Her "To Do" list for the day is to eat -- still a challenge for her -- and to rest; both of which are imperative for continued healing and to regain her strength.


2:50 pm:
Another day of "baby steps" as we challeneged Joyce/mom by lengthening -- by a few feet -- the slow walk to the bathroom, so she could at least peek around the corner of her hospital room to gain some perspective as to where she was.

Even such an effort was completely and understandably exhausting and, while she is extraordinarly and admirably positive, she expresses being "disgusted" with her lack of stamina.  Although she still has no recollection, and minimal comprehension of what circumstances have brought her to this point, she stated today as she was helped back into bed, "I just want to get back on track."  And I assured her that that was the goal that she was working so hard to attain, and we are all CONFIDENT that she will reach and surpass it as she has with every challenge that she has every encountered. 
Sunday, November 29th
1:57 pm:
Tuesday,  December 1st
Apologies for the delayed update, but it was a difficult/busy two days at the hospital, and even the passage of one day to the next is sometimes a blur....

The transfer to St. Elizabeth's rehab facility was postponed until early this evening, when she was brought via ambulance and is now settled in.

Tomorrow begins what is sure to be a challenging and intensive journey towards recovery. 

Due to Joyce/mom's continued cognitive impairment -- and her continued battle against the extraordinary exhaustion induced by major brain surgery -- the rehabilitation process will take absolutely every ounce of energy and focus that she can muster.   Therefore, we have to respectfully request that she receive no visitors, at least for the time being.

The entire Arnold family greatly appreciates everyone's genuine interest, concern, prayers, positive energy and thoughtful messages.

9:11 pm:
Thursday,  December 3rd
7:02 pm:
Joyce/mom continues to draw on her extraordinary inner strength, courage, fortitude, determination and good humor – which have served her well all through life – as she persists to battle against constant exhaustion and fatigue to participate in her aggressive rehabilitation regiment.  The comprehensive therapy she is receiving is imperative to improve her mobility and cognitive processing to the point that she is able to return home, which is the goal that she has continued to communicate, despite her confused state.
 
Due to her cognitive impairment – as well as our over-protective nature of our beloved mother – one of us has slept in the ICU waiting room/spent the night in her hospital room every day since her surgery on November 24th and Dick or one of the kids has been with her every single minute.
 
Next week, she will begin the radiation/chemo protocol that is standard for this type of disease (Glioblastoma, which gained recent attention after Ted Kennedy’s diagnosis.)

Monday,  December 7th
Joyce/mom had quite an eventful day today as she embarked on her journey of treatment;  a daunting journey across uncharted territory, not dissimilar to the harrowing journey traversed by one of her lifelong heroes, Charles Lindbergh, and one which she is already facing with the same courage and determination that she so admired of Lindbergh.

This morning, mom was transported from St. Elizabeth’s Hospital to her first appointment at the Cancer Treatment Center in Swansea via a wheelchair-transport van, which was quite a unique experience, but less eventful than her commute from St. Louis University Hospital last week, when her ambulance was flagged down to stop and assist an inebriated man who had fallen on the sidewalk and was bleeding profusely from the head.

While at the Treatment Center, mom underwent a CT scan and was then fitted for the mask that she will be required to wear during each of her 30 radiation treatments, which will commence in about a week. 

Despite her grueling morning, mom’s tenacity propelled her to not only fully participate in her afternoon physical therapy session back at St. Elizabeth’s, but to perform at her highest level yet!

The true essence of mom’s unique and wonderful personality is able to permeate even her cognitive impairment and her exhaustion,  and is being recognized and acknowledged by her therapists and her nursing staff, who have begun to realize what an extraordinary woman they have in their midst.  The staff is additionally amazed by the Arnold kids’ infinite reserve of special “mom stories,”  including her love of literature and poetry and how she eschews store-bought gifts in favor of a note, a poem, or a kind gesture to others or how she gave each of us $60 on her 60th birthday with instructions to do something fun or special on her day!

8:00 pm:
Wednesday,  December 9th
Joyce/mom has had a busy two days of therapy milestones and we are encouraged that we are noticing a slight improvement in her extreme lethargy and level of alertness, as she begins to be weaned off of some of her medication.

She is working so incredibly hard (although she has NEVER done ANYTHING in her life, without giving it 1,000%) at both her rigorous therapy schedule and at forcing herself to eat as she progresses towards her goal of enjoying the simple, normal pleasures of life at home, such as sipping coffee at the dining room table with her beloved husband of 51 years or enjoying the view out of her sunroom window.

During one therapy session yesterday, the therapists actually took mom OUTSIDE to practice getting in and out  of a car!.  It was difficult, but she did it!

.In yet another session, she was able to lengthen the distance she could walk at a steady pace without stopping (about 400 ft).

She additionally is showing improvement with her cognitive processing, demonstrating her ability to remember a greater number of commands in a row.

What continues to be evident to each of mom's children is that, despite her current diminished and impaired state, mom has not relinquished her roles as our source of greatest strength and inspiration as well as our true matriarch and the HUB of the ARNOLD FAMILY WHEEL!


6:30 pm: