An End to a 36 Day Hospital Tour.

Blogging comfortably from my new room at my sisters. It's good to be "home".

Norco for a migraine?

Norco (Hydrocodone - a narcotic) was what the doctor on call prescribed to me at 4:00 am when I called asking for migraine medicine. Really...there is nothing in this hospital between Tylenol and a narcotic to assist in migraine relief? I had enough of Norco after the surgery, I didn't want it for a migraine. I had a migraine pill in my purse left over from Loyola and I asked the nurse to get that for me instead. I guess I could have done that earlier; my bad, I figured the doctor would know to give migraine medicine for a migraine.

Off the Steroids...and going home :)

They told me that getting off the steroids would make me weak, tired and a decreased appetite. With a little help from my angelic friends I feel great and am starving! Okay...not starving...but food sure does sounds good! Gravity can be defied. I'm leaving tomorrow for home (Cathy's). With this brings mixed emotions...of which include, hope, joy and happiness. YIPPEE!

MRI - Postponed.

A few things have to be done in order to be a candidate for the clinical trial, an updated MRI on the brain is one of them; this will be done on Friday morning at 8:30. Perhaps by the A.M. God will have gently removed the cancer cells for me? His healing has already been granted...who would I be to judge his divine timing? After 4 different attempts to get an IV working in my arm they've postponed the MRI. This test needs to be done with / and with out contrast and without a working IV this can not be done.

Heathly Eating and Me...Oxymoron?

I've grazed myself on sweets, toast, popcorn, chips, shakes and fries into this ripe age of 38. I've entertained the idea of eating healthy but chocolate, rich ice cream and Doritos offer so much more pizazz than veggies and tofu...the entertained idea stayed shelved. Now this idea is more than entertainment to the taste buds and more like indemnity. Craving chips in a panic last night I phone Ray to request healthy veggie chips! He and Jeanne came to my rescue with a goody bag from Whole Foods. 2 bags of veggie chips, all natural peanut butter, natural sweetener (for me to try in my coffee) and whole wheat crackers. The chips were perfect and the peanut butter tastes great on the crackers! The junk food junkie in me must step aside in order for my body to regain it's strength. My goal is to eliminate (or GREATLY LIMIT) refined sugar of all kinds. Eating more wheat's etc, trying natural sweetener and carob snacks. Chef Cindy (my niece) who is very innovative in the kitchen has been quiet the cheerleader for me on this quest and has already looked up fun recipes for us to create :) All your support down this path is greatly appreciated! Just in case you were thinking to yourself, "Self, Janice would surely enjoy this big batch of M&M cookies..." You are right, I would...yet my body will benefit more from the healthy alternative. All that to say...in lieu of flowers and sweets...for those of you who hate to show up empty handed...I'd be grateful for a little goody bag full of healthy snacks :) (PLEASE DON'T THINK EMPTY HANDS ARE NOT WELCOME...THE EMPTY HAND GIVE BIG HUGS...of which there is no alternative!)

OT & PT.

Things I bring to the therapy table are my desire for my body to return to it's healthy strong state AND the "floaties" (floating cancer cells around in the brain fluid), legs that don't work...and a somewhat resigned attitudes towards the work they are doing. Most half hour sessions start five minutes late then take four minutes to start. We toss a few balls, lift a three pound dumb bell then make small talk. The OT or PT think for a minute ... hmm...what should we do next...to come to the decision to repeat what we just did then we're done....usually 5 minutes early. My resignation towards their service is not going to help me reach my physical goals however what it has done has made me have to be proactive about my recovery. This morning I danced to Shakira and others for over hour (in my mind and heart that is). The visualization was wonderful and I look forward to the visualization becoming a reality.

Visitors Welcome.

Just some thoughts about these last 4 weeks. My heart flows with gratitude towards every person who keeps me in thought and prayer. I believe I mentioned earlier my answer to the social workers question regarding who I have in my life that supports me and without hesitation I answered that I don't have anyone in my life that doesn't support me. Without this present trial and the opportunity for all of my world to show up show big for me, how would I have answered that? I learned a lesson when I was very young from my father regarding the tradition of giving Christmas gifts. Why do we use so much energy to find the perfect Christmas gift when the other 364 are just as valid gift giving days? The lyrics to this song sing to that lesson. Don't Save it all for Christmas Day (Peter Zizzo, Ric Wake, Celine Dion) Don't get so busy that you miss Giving just a little kiss To the ones you love Don't even wait a little while To give them just a little smile A little is enough How many people are crying How many people are dying How many people are asking for love So don't save it all for Christmas day Find a way To give a little love everyday Don't save it all for Christmas day Find your way' Cause holidays have come and gone But loves lives on If you give on Love... How could you wait another minute A hug is warmer when you're in it And baby that's a fact And saying "I love you"'s always better Seasons, reasons, they don't matter So don't hold back How many people in this world So needful in this world How many people in this world So needful in this world How many people are praying for love So don't save it all for Christmas day Find a way To give a little love everyday Don't save it all for Christmas day Find your way' Cause holidays have come and gone But loves lives on If you give on Love... Let all the children know Everywhere that they go Their whole life long Let them know love So don't save it all for Christmas day Find a way To give a little love everyday Don't save it all for Christmas day Find your way' Cause holidays have come and gone But loves lives on If you give on Love... Love... All that to say, share the love that overflows from your heart abundantly with all the people around you everyday. Visitors welcome? In between your thoughts and prayers for me -- search out Visitors Welcome signs hanging from the hearts of your family and friends. In your absence from visiting and thinking about me know that our God is restoring my strength and energy. I pray His strength and energy equally surround you! Be free!

Consider it pure Joy.

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. James 1:1-3 And we need perseverance for what? Maturity James 1:4 Character & Hope Romans 5:4 Joy in trials; a sure sign of maturity, character, and hope...all of which for the last 30 days I've laid to my side to selfishly fully embrace each ache, pain, frustration, disappointment, grief and sorrow. To celebrate today because I know our God is still on the throne, to experience joy because it's a gift that comes with my salvation, and to apprehend that Jesus died for me to laugh and love in all moments, this is my prayers request. Join me in belly laughs and unconditional love :)

Goal: Home.

The set goal is for me to go home next Tuesday. This excitement brings its own challenges. Being dependent on others for almost a month for mostly everything, what will this look like out of this environment? My lovely tri-level townhome is not wheelchair ready. With their goal of going home in a wheel chair I'm proclaiming that it is temporary. That's it for now. Update on going home: With much extended love from Cathy and her family they are setting up a room for me to have at her pad. This will be my home away from home. The hospital does not want me to be alone yet and being at her house will help in this transition. I am very thankful for the care that she's extended over these weeks and I'm forever grateful for her strength and energy to love me; unconditionally :)

Exhausted.

Weakness takes over my physical and emotional desire to be strong and the cognitive dissonance cause my thoughts to only add to the exhaustion. I have no doubt that my Jesus is near, my insecurity is in my ability to reach out to Him; having said that my ability to reach Him does not effect His ability to reach me. If there is anything good in me it is because of His generosity. I am weak. He is strong. I am nothing. His is everything. I am insecure. He is stable. Still, I am me, created in His image.

Evaluations and Introductions.

Friday was my first day in the rehab wing at LGH and various staff showed up earning their keep here at the hospital. The mix between them doing their job and me knowing who I was just one month ago is humbling and somewhat humiliating. The neuropsychologist I'm sure has a point to say but I don't remember it being important. When I talked about my faith she did reply "Oh that works for a lot of people"...hmm. Another girl came in from the neurology department and held a pencil for me to identify, a watch, asked me what season it was, what hospital I was in (that one I almost failed...this hospital tour of mine has me confused). I believe I passed that evaluation (if passing was my goal). On Saturday I met with the speech therapist and she asked me to write checks, log it in a register, identify a stapler, describe a picture, recall the states in 60 seconds, who the president is...and so on...I said Clinton...where have I been for 8 years? Luckily my political ignorance didn't hinder my passing. For the record I did correct myself :). The reason for meeting with her is because the effect of the "floaties" cancer cells in my brain fluid and my drooping right side of my face. On Sunday my OT had me reach out to her and grab 6 inch plastic rings from one hand and place them on a ring holder. This seemingly easy task is difficult for me because my body doesn't recognize that I have legs to keep me balanced. I was able to share this weekend with Dan...how I long for weekends on my deck with the Good Word, coffee and the gentle whisper from the swaying trees. Needless to say this is life now. We visited with Ed Y on Friday for a bit; Cindy, Lisa and DJ on Saturday afternoon and Ray and Jeanne spiced up my menu with pizza from Lou Malnati's...yum! There are many things that challenge my spirit through out the day and mostly I just want to sleep. The "floaties" take away from the simple pleasures, I don't know how to explain it. OH ... but in my PT evaluation I was asked to read an eye chart where I apparently have close to 20 / 16 vision...that was fun to read the last line on the chart :)

Sugar and Cancer?

Not one person in the hospital has ever heard of the correlation and today when I asked Laurel about it she told me with a somewhat smug smirk that she doesn't believe it, she had nothing else to add, that was it. I believe that doctors don't know everything.

Ipilimumab (MDX-010)

The name of the experiemental drug they recommend for my brain tumors is called Ipilimumab (MDX-010). This will start perhaps as early as this week. It is an antibody that will attack the tumors remaining. 4 times every 3 weeks for 1 hour.

6 hours...

of sleep in one night was God's gift to me last night, thank you Jesus!

August 21, 2008 Update.

This morning was rough and the day added despair, ended with a prayers that reopened my heart to the presence of God. Basically the morning started with me waking to a folly bag (for my urine) not working which meant that my bladder was holding it (one of my body's function that needs to be retrained!). I was in PAIN! All you holders out there - let it flow, for my sake :) After a 30 minute episode of attempting to communicate with the nurses and finally a doctor I screamed I HAVE TO PEEEEE! I don't know how much more clear I could have been but perhaps I was speaking in tongues?! The doctor came in wanting to give me meds for my stomach pain ... no written comment needed on her...this blog is rated G. So, my bladder which is MAXED at approximately 1000 was holding on to almost 1400! Insane pain. During breakfast my doctor came in and told me that the lung CT scan did find a small leisson. Not news I wanted. I cried during my transportation (they bring me down to the basement on a bed) to radiation and the RT department just let me cry -- thank you! They are so nice to me, beautiful people. Later OT (occupational therapy) came and wiggled my legs for exercise, or at least that's the extent of what I felt it was worth. Pat & Cathy & dad came out with clothes for me to wear during the day. The rehabilitation I guess frowns on hospital gowns, huh?! JK. My first impression of this new wing of the hospital was petrified. At least this shared room has an empty bed next to me, thank you Jesus! The walls of my world shrunk, my hearts pound echoed louder and my thoughts were cages by hopelessness. We took a wheelchair outside and my world was reopened back up to me. The day ended late after the hustle of moving and a well needed and much appreciated shower. Yeah! I think that's it, for now.

How can I be patient with God's timing when waiting 20 minutes (so far) for a nurse 8 steps from my room seems impossible? What does it really look like to be patient? Either I don't know or waiting on God is easier than waiting on man. Yes, that must have something to do with it. I trust God's good intentions and have no doubt that He cares and loves me, I can wait because I know He cares. I have a hard time seeing the care from the staff -- not all, just some. So patience with people is the real test. Extending patience for people who don't care about the same things I do; or even care about me. Lord, forgive me for not extending your grace to my thorns; you love them too.

New bed, same hospital.

They are planing to move me from this luxurious private room on the oncology floor to a much less prestigious shared rehab room. This is planned for tomorrow sometime, I'm not sure when. I will stay here until the radiation is done and then we'll see where to next. OH and of course, it not a complete day until they scan me...yes, add one more CT scan to the list! This routine scan was done in the lung and chest area.

Healed of Cancer, by Dodie Osteen

Last night my spirit was renewed when my father read from this book to me. This tiny little book with only 72 pages is an authentic expression of heart felt gratitude towards our healing God intermingled with the temptations of doubt and defeat of the devil. (Thank you Randy & Simone for the book!) Pat and Cathy shared in my dads reading and Cathy believes I'm ready to give knitting another try (something to do while my dad reads to us!). My soul celebrates the healing that my body is not yet experiencing. I'm using God's strength right now to focus on this somewhat strenuous task of journaling; a seemingly simple task that I've taken for granted all of my writing career. My left eye is fighting an infection and the right side of my face is dropping with my right eye blinking at a retarded pace to the left. No answer has been given for this. I suppose in the end the cause means nothing to me as much as the cure. The legs that allow me to chase Aspen, run up and down stairs, jump rope, walk, bike and basically move have turned from wet noodles to wet bricks. Having that said, they still have the appearance of wet noodles!! They are practically numb to touch yet the weight of them is a constant reminder to me that they are there...this makes good sleep ALMOST impossible. This is all a shock to my system. My body, mind and spirit need strength and everything that surrounds my everyday activities represent a weak body dependant on others care; of which in my humility I am thankful. All that to say, my spirit rejoices and my mind shall follow dispite what my body is screaming!

Power and Patience.

He's got the Power; I need the patience. AND I will not let my need for patience with His timing take away my knowing that He can heal my body at any moment.

Luthern General

Thank you for your calls and prayers, they are well received, even though not returned... here's an update: Day 3 of radiation. Not much to report, but it makes me nauseous. Back up to Thursday (the 14th) I experienced excruciating pain in my right ovary area..while at Marianjoy. It included dizziness, psychedelic images and blurred vision. They had trouble inserting an IV. I vomited 4 times between 7pm and 7am, and finally left by an ambulance to Lutheran General Hospital in the morning. I was in ER most of the day, where they did various tests and confirmed that a cyst in my ovary had burst. I have had so many CAT scans and MRIs- they all confirm Melanoma tumors on the spine, that are currently being radiated, and there are 4 lesions on my brain, for which the doctors are formulating a game plan. Randy, Simone and Dan prayed with gratitude for the healing that is manifesting in my body, and I ask you to join in the same. Our God is good as his word has ordained. Last night I had a dream that I got up and walked. I got up and walked and forgot that I wasn't supposed to be. It was so natural, and I praised God for the healing. Today I have big blue moon boots on to help my feet and ankles because my legs have not been used. I don't know the timing of this journey, but even now, my friend Anne is typing this for me, as my eyes are too sensitive (and it is too strenuous to look at the keyboard). I don't know what its like to be you all- wanting to visit and take care of me, but I DO know that I'm loved. I need to use my time for rest for this journey that is ahead of me. Don't feel bad if you don't get a chance to visit. Right now I feel its best for my recovery to have less visitors. Emma: I know you want to come see me- thank you thank you thank you. I see your smiling face even though you are not here. Karen and Len: Thanks for the cookie bouquet. Eve and Paul: For bringing casino night to the hospital (and the bag of goodies). I wish I felt better for that. Thanks for all the flowers and cards. Its good to know I'm not doing this alone. Pat and Cathy: Thank you just for everything! Ray and Jeanne: Thanks for everything, too. Mark and Mary: Thanks for your support. Thank you Lynne for your calls and emails. Thank you Jayne (from Seattle) for being a prayer warrior. Thank you Sharon and Jim for believing in my healing. Thank you Mark and Jackie for the aromatheropy pup...so cute and made me cry :) And Dan- for loving me like no other man can love a woman. And I'd like to thank my mom and dad who brought me up with good character to help me win this award and help me win the race! Thank you to all the nurses, transporters, physical therapists, doctors, and technicians! :) Beating cancer will outlast any academy award!!

Cheetos.

My saturated medicated taste buds enjoyed the pungent imposter cheese chunches. They made my taste buds smile again. :) Having said that, please know my taste buds come second to feeding my soul.

38 Staples Strong

38 staples in my back. Everyone views me as so strong. Please, if you view me as strong, don't view my tears as a weakness. 38 staples strong.

August 14, 2008

How do you spell relief? E-N-E-M-A. How do you spell freedom? E-N-E-M-A. How do you spell happiness? E-N-E-M-A. How do you spell... all right, you get the idea.

MRH goals.

Marianjoy has set a goal for me to be released on August 28th with a wheelchair. This is much different than my goal of leaving this Friday with a jump rope. My legs remind me of a wet set of noddles attached to a wooden spoon over a crock pot of spaghetti. I'm going to see the doctor tomorrow morning -- I'm thinking the nerve weakness is from the Neurontin I've been on, I'm going to ask to get off of it. I'm not afraid of this time or place -- this is temporary and my soul rejoices, even in perceived helplessness I know my God smiles with me :)

August 13. 2008

A short summary of this journey that started July 13: Weird numbing feelings below the belt -- blamed it on too much Thai food (ha) or a bug bit, that week I dealt with the "pain" waiting for it to go away. July 21: These dates get mixed up but basically I wasn't getting any better and what I was experiencing became painful. I went to a ER room where the doctor ordered an MRI. The results showed two cysts, one on the ovaries (simple and benign - no worries, just a coincidence) and a cyst at the end of my spin. Fine I thought -- remove it. HOWEVER, the neurosurgeon could not put the location of the cyst to the existing pain. Hmm....second opinion. Now at the Bumrungrad International Hospital, new neurologist, finds new stuff. The protective liquid that covers the spine is MIA through L2 - L4. He orders another MRI. The new MRI is a mystery, not sure what it is, he suggests a biopsy. By this time in the game I'm scheduled to fly home on the 28th so I'm pick this all up when I get home. The flight home was horribly long and uncomfortable. I had wheel chair assistance between flights, thank you! I overheard a man comment to his children, perhaps grandchildren, that next time they fly they will get someone in a wheelchair so they wont have to wait in line. As to which I replied (although not invited into the conversation - the level of his voice I perceived as an invitation), "I'd rather be walking and waiting then in this wheelchair.". He disagreed. I was in shock. Dan and Jon met me at O'Hare, rolled up to them with my United wheels and wanted it all to look different. I wanted the pain to go away but it persisted. ER at Delnor on the 28th, transfer to Loyola. More MRI's on Tuesday, 4.5 surgery on Wednesday. ICU Thursday, transfer out later that day (or was that Friday?). The mystery mass has metastasized melanoma leisons and a leison was also found on the brain. Chemo or something is recommended for my future but for now we're working on getting my strength back. Leave for Marianjoy Rehabilitation Hospital the next Friday.

August 12. 2008

In the presence of my circumstance with limited distractions the tears flow from the grief over expectations vs limitations. I welcome the tears as I know they are there whether seen or not and I embrace the authentic expression -- even if it is in solitude. I'm feeling exhausted today. My left leg which I once felt was strong has weakened. My right leg lacks communication. I saw the house psychologist today as part of the intake evaluation, not much to note with that meeting. Silly questions, silly answers. What emotions are expected from someone who had control over her body and embraced exercise with joy and now finds her soul attached to legs that don't understand the spoken nerve language?