Keeping busy

While not being active is a challenge for me, but today it paid off.  For the last week I have been knitting and either listening to music or watching old videos, and this is the first day I am headache free!  I also finished the sweater I was making for ,y grandson Emory!

The next 10 days I'm going to tackle learning how to quilt.

Graduation night

Last night I was part of McLain Community High Schools graduation.  These kids were excited, and proud to be moving on to the next stage of their lives.  Family and friends packed the auditorium, and there was cheering and camera flashing going on throughout the celebration.  As the students received their diplomas they filed past their teachers where we could greet and exchange congratulations.
This was a emotional event for me.  Each of these graduates have overcome some type of obstacle to become successful.  I was a small part of that journey and feel proud to be part of their journey. 
I came home exhausted and exhilarated, my strength is far from normal and seeing these students reaching their goal was truly joyous.
As my surgery approaches I am feeling despondent, I remember my students "acting out" towards the end of the year.  New beginnings are kinda scary.  I am focusing on a successful surgery and endeavoring to stay positive that the results will be good.  It's the unknowing that is disrupting me. 
Here's to waking up to good news and looking forward to a healthy future.

Blowin in the wind

For those who have seen Harry Potter (and that is most everyone Bob) there is a scene where Harry is riding on his broomstick getting tossed around during a Quiditch match.  After seeing the Neurologist Dr. Albright I am feeling a lot like Harry.
He wants to do more testing on my thyroid before the scheduled surgery, and was pretty up front about the next 8 weeks.  I will probably loose my hair (think of me as Senead O'Connor) and my finger nails will be thin and broken.  This is without chemo which I may have to have, yet to be determined.
I will have to postpone my vacation in June to see my grandson Emory, but he was clear about postponing it, not cancelling it.  Still focusing on June 9th being the road to normality, after the mass is removed and analyzed the medical community will provide a path towards better health for me.

Which is it?

Are my headaches caused by exercise or blood thickness?  This is a great example of isolating a symptom and determining it's effect.  Except I have compounding factors.  My INR is 3 which is as thin as the doctors want my blood to be and I have quit exercising.  Is it both or just one?  I would like to continue walking and being  a little active but not at the risk of causing harm to myself.
Therefore today I went on a walk in Golden along Clear Creek.  I highly recommend it, nice path, restaurants along the way, and the creek running rapidly towards the Coors plant.  I thoroughly enjoyed it and am hoping there will be no headache to follow tonite.

Probation

Dr. Straub lectured me on listening to my body.  If I am getting headaches and they are getting worse I should be resting not exercising.  Even though my current exercise is so far from what I would like to be doing for exercising. 
I feel like listening to my body is like listening to my Mom tell me something I already know.  Nothing is more annoying when you don't like what is being told to you.  Since April 9th I have tried to change and listen to what my body is telling me, before that I thought I could overcome what my body had to say, something like mind over matter.
Today I was sitting in the sun reading, something I always enjoyed when life was full and I could enjoy a few moments to enjoy the sunshine, now I have to remind self to sit and relax.  Healing for me is also mind over matter, rest versus run.

If nothing we do matters..

Then the smallest act of kindness, or courage, or perseverance is grace.  It is what makes us smile and content.  How we choose to live the next moment determines the next hour and day and year. 
Live for the moment knowing your choices will grace the outcome of your future.

Last Night

I was awake most of the night with severe hot flashes.  I was literally generating so much heat that the bed beneath me was hot.  It is lonely in the night when you can't sleep.  Knowing that Rob has to get up for work the next morning, I endure.  The night seems endless when you are awake.
And in the morning I am exhausted both in spirit and body, and this is when Rob requests I ask the doctor if I will be OK by myself.  I didn't suffer by myself, he was suffering with me, not knowing what to do, only knowing I was in misery.
Another day leading to another night.

Surgery update

My doctors have met and decided to postpone the surgery to June 9th.  The Hematologist and Neurologist both think the blood clots are the most important.  The ENT and Endocrinologist both think the cancer is the most important.  They have come to an agreement, which is OK by me.
I am planning on having the easiest cancer to fix, hope my body agrees with me.  So far my body has been pretty unpredictable, for both me and the medical profession.  My blood has been too thick, too thin, and now too thick.  The docs keep changing the dose of the medicine but they are having difficulty find the right amount. 
I can't make my body behave.  It's not like I can eat less, or exercise more I can only follow the docs instructions and hope they know what they are doing.  But really, they are for the most part just guessing, and I am thier Guinea pig. 

Sunday in the park

We had a nice walk today with bird watchers, bikers,  fishermen,  families with children, and those like me just out for a stroll.  I went further today than I have before and did not have any side effects afterwards which made the day even better. 
My sister in law fought cancer for many years, and I remember telling her how good she looked, and how she impressed me with her spirit.  People keep telling me how good I look and now I realize what is wrong with me can't be seen on the outside, if it were then the doctors wouldn't have had such difficulty finding it.  In fact they still don't know what type of cancer it is.
As far as my attitude goes, until I know what to worry about I don't really have anything to worry about.  I can't control an oncoming car that is out of control, and I can't control what they will find in my body. 

Five days of snow in May

Living in the mountains has its pros and cons such as; views and high altitude, solitude and distance, and cool summers and long winters.  Our first snow was the last day of summer this year and it's now May 15th and we still have our ground covered in that cold white stuff. 
During the first two days of this weather pattern I found myself getting depressed because the snow was so heavy I didn't want to drive anywhere and I felt trapped.  On the third day I went to town and my attitude improved immensely. My headaches increase with bad weather while my mood deteriorates.  Finding ways to overcome this has been challenging.
What I know is I love living with the forest surrounding me, the vistas and the clean mountain air. The depression wasn't due to where I live but what I am hindered by.  Time to toughen up Tina!  There is much to be grateful for and much to be hopeful for.

I don't want to think

I haven't been keeping up the last two days because I have been in a funk.  After all it is May 12 and for the last three days we have had snow.  The first two days I stayed in reading books, getting caught up on the checkbook, trying to keep myself busy, but what happened is I had to much time to think.  Think about the blood clots, think about the thyroid cancer, think about my backache, think about my headache, wondering if they were signs that another "episode" was on it's way.
Today I met with colleagues at work, and I thought about how I miss my kids, about what I can do better and different for next year, what my friends and colleagues are up to, how I miss everyone there.  I didn't notice my aches, and barely felt any headache at all.  A few asked what was going on with me, but most know I am in a holding pattern.
Now is the time for healing, and as most people know healing occurs in its own time, not on your agenda.  I am exercising and following doctor orders and my strength is slowly returning.  My patience has been tried many times over because the healing is progressing much more slowly than I would like.  However, the key is it is progressing, and all the people I meet and know are supportive and caring.  Looking for that silver lining, no one is pushing me to heal except for me, and that is as it should be.  I need to push, but not to hard.  The line the dividing "push" and "too hard" is illusive,  the best I can do is keep at it and use the support I am getting from everyone to keep at it!

Day off

I took yesterday off from blogging, from housework, form thinking about my problems.  It was mothers day and Rob and I went for two walks and had milkshakes.  It was a good day.
Today I went to a doctors appointment and my blood is in the good range, then a walk with Gonzo my dog, and finally home for a nap.  My strength is improving but not very stable, it's hard to figure how when is enough or when is too much.  My body isn't sending me any signals. 
Those who know me know I have had hot flashes for years, now they are lasting 15 minutes and my whole face and neck turn crimson and I perspire very profusely.  My guess is the thyroid tells a body when it's tired and since I'm not getting thyroid messages I get too tired and then I get an incredible message. 
In fact I'm going to blame everything on my thyroid until this is over it's an easy target.

No news on the horizon

An enjoyable visit from a close friend and his daughter Marty and Hannah, a lovely walk downtown by the river, and a stroll around the mall filled my day.  It's nice to have nothing to say for a change.  Tomorrow is mothers day, and I wish all mothers a wonderful day, and all those with mothers warm thoughts.
There are two women in particular who I want to acknowledge, my mother, and my friend Paty.  My mom really enjoyed being a mom, which is good since she had eight kids, which produced 16 grand kids, and 10 great grand kids (so far).  Not exactly ZPG!  But a great mom who would do anything for her kids especially make them responsible and give them the courage to find what inspired them.
Paty is a friend I grew up with from High school, she married her high school sweetheart and I re-met her through face book.  It has been fun getting to know her again, she also has two children and one grandchild.  Recently her son-in-law was in a fatal car accident, and she has been asking for prayers for her children and grandchildren.  Her energies have been focused on her family and I know they depend on her bravery and strength and my thoughts are with her. 
There are many incredible mothers out there, my new soon to be daughter in law who is gentle with her son and the love shines through for all to see who was recently here caring for during my recovery is just one of the many I know and have met.  To all of you may your day be filled with love and happiness.

Roller coasters

Nothing like a good roller coaster ride to get the adrenalin flowing, 3-5 minutes of exhilaration and then back on the ground happy and maybe relieved.  I haven't gotten off my roller coaster and touched the ground for longer than a couple of days in the past 6 weeks.  Lets just say I'm losing patience and am ready for this to be behind me.
Yesterday Dr. Mikhaeel made me feel like this is no big thing, they have the blood clots under control and it's just a matter of time and healing.  Today I saw Dr. Hepworth the ENT doctor and when he walked in it was like the slow ride to the top, the belly tickle once I got to the top, and the ride down. 
He had cool machines like a pair of television glasses that I got to see what he was seeing when he scoped my ear, nose and throat.  He gave me a package of 4 CD's from the MRI and showed my the top of my skull, my eyes, and my sinus on his screen.  Pretty cool stuff.  Then  He showed me my left and right thyroids and how much larger my right thyroid was.  Large mass 10cm on my right thyroid, but more importantly (this is the dropping part) there is necrosis in my thyroid.  The only way to find out what is going on is surgery (still falling).  If there is cancer they will remove both thyroids right then, and may take my para-thyroids (they regulate calcium and vitamin D) and possibility of damaging my vocal chords, which can be repaired.
So back to the docs meeting and determining what is the most critical to take care of; the mass or the blood clots.
Oh yea, now they realize the fevers I had for 7 days was a thyroid storm, and yes it could come back.  Damn some people have all the luck.  Good thing he has scheduled surgery for 5/27 so I don't have much waiting around time!

Things are looking up

Saw Dr. Mikhaeel the hematologist today and the test for Lupus came back negative WOOHOO.  They still don't know what caused the blood clots and are still checking, but blood is a relative new field of study and ongoing.  The good news is they can easily manage blood clots for the rest of my life using Coumadin.  Many people are on Coumadin and from what I hear it is pretty easy to manage.
Afterwards I met some colleagues for an iced tea and it was easy to forget about medical issues and enjoy their company.  When I got home I was feeling normal,  Rob and I had JJ's pizza and enjoyed watching TV.  It's always the simple things in life that make you the happiest.

Cloudy day

Last night I woke with throbbing back pain and a severe ache in my chest.  I tried moving around to relieve the pressure even getting up out of bed, nothing seemed to work.  I finally work Rob my husband and asked what should I do, the last time I had this kind of pain I ended up taking an ambulance ride.  We decided I should try a pain pill first. 
It worked and I was able to go back to sleep waking up at 10:00 feeling very groggy.  My right ear had pressure again and I was feeling a little nauseous.  I had a doctors appointment at 10:30 so I got ready and went.  I talked to the doctor about my concern and she said my blood was thinning slowly, but not to worry because the novolox shots were keeping me in check with the blood clots.
I had made arrangements the previous day to meet colleagues for coffee at the mall where I was went  for my daily exercise.  This was the highlight of my day, getting my mind off my troubles, buying a new shirt with the girls, and generally getting caught up. 
Enough of feeling sorry for myself, tomorrow will be a better day.

Training

Rather than going to another appointment for physical therapy to get my strength back I talked to the doctor about walking the mall.  Walking is the best exercise for me, and the mall has benches when I get tired, a controlled environment so no worry about weather, no rocks for me to trip on and bleed out, and food and water if I need it.  Seems too good to be true and good way to start building muscle. Of course the drawback is all the enticing stores to spend money in.  I am not normally a mall person and so my power of resistance is low when attached by marketeers. 
I guess I will be building dual strength; not spending money on stuff I really don't need and restoring my energy levels to pre-sick bed-ridden status.  With that said I was able to walk around the mall twice today and am grateful that I am making progress.  When I can make it around the mall three times at a good rate I will switch to a gym that has a pool and start swimming laps, better strength training and way cheaper. 

Me

Saw Dr. Straub who is my primary doctor and  she was very happy to see me feeling so much better.  It is like night and day in a matter of a week and she told me how concerned she was when I last left her.  Her sincerity restores my feeling of good will to those who dedicate their lives to the arts of healing.
I will be seeing all five of the doctors working on my case this month and some of them more than once.  This is quite a change for someone who only went to doctors for annual checkups and occasional sinus infections.  Medicine is such a complicated process.  Each speciality knowing their art and the priorities appropriate to their section, will work together to complete the puzzle that is me!  Negotiations and discussions will occur that prioritize the level of care necessary for the crazy condition of me!
Notice it all comes down to me? 
Right now I have to get better to go back to work which I miss terribly, I have to get stronger to restore my active relationship with my husband, family, and friends who have supported me through this ordeal, I have to go slow to get strong. This is probably true for everyone, but understanding slow is as confusing as understanding I'm sick.  I have always been able to get through the week and get better by resting over the weekend.  I do not have the luxury to ignore the signals my body is sending to me.  Now is the time to hear what I have to say to me.
Ahh once again it's all about me.

Another day

I feel like this is the calm before the storm.  I'm catching my breath and enjoying my family like we are on holiday.  Good talks, good food, and togetherness relieves the spirit and warms the heart.  Tomorrow I begin the tour of doctors.
Yesterday I said how much I trust my doctors, let me add a caveat to that.  My brother says the difference between god and doctors is that god doesn't think he's a doctor.  This is my body and I know what I'm feeling and whether it fits the symptoms or not doesn't matter one bit to me.  As a patient I have to advocate for myself.  Doctors find me an interesting case because there are many things that are rare.
My blood clots are on the venus side of my brain instead of the arterial side, and they tell me the clots are life threatening, but the docs haven't explained yet what that means, they keep avoiding telling me what will happen if....  OK, life threatening is enough for me to take it seriously and follow their orders.  I take my medicines and shots on schedule, I will visit the docs to check the coagulation regularly and when I feel changes in my body I will let them know.
Often what I have told them doesn't relate to what is going on but my insistence has proved to finally make a connection for them. I finally found a team of doctors who aren't just treating the symptoms but found and are still looking for the cause of the problem.  They found the headaches were caused by the blood clots, but now what caused the blood clots?
I face problems head on and have a strength and perseverance of character to see this through.  I have no doubt that I will be healed with the aid of the doctors, medicine, and the support of all I love and those who care for me.

Progress

5/1  Looking back over the last few days I can't believe I'm home.  Only three days ago 4/28 I was talking to Dr Wac who wanted to share with  what they finally found.  I had my kids Megs, Brian, Christina, Emory, and Ali with me, and we were light hearted sitting in my cave (couldn't handle light or loud noise) when I got the news.  I always thought if I heard a doctor say you have a life threatening illness (let alone two) I would crumble and dissolve into a puddle of tears and "Poor Me's" instead I was relieved they found out what was causing the all the pain I was going through. 
Unfortunately it was my husbands Robs birthday and he didn't take the news so lighthearted.  When the kids left, Rob and I snuggled in my hospital bed watching TV until it was time for him to go home.  I had the drugs, the nurses, and the doctors who I literally trusted with my life to support me, Rob was working on an important project at work and spending many hours in the hospital with me, to say the least he was pushing it hard.
The next morning I woke to light in the room feeling better than I had in weeks, the heparin was working magic for me.  I got up and made myself a cup of tea, and within an hour the headache and nausea was back and I cried as I closed the curtains.  It was like a gift that had been taken away from you.  I took the pain pills and spent the day trying my best to recapture my good mood.  That night Rob spent the night with me and having him close to me made me feel closer to normal.  Even with the nurses coming and going, and the hospital noises his stealing blankets was normal and comforting.  I highly recommend family get in bed together in the hospital, the snuggling is the most therapeutic medicine I know of!
4/30 I woke to sunshine and feeling great.  No pain killers, and high spirits.  Dr.Wac and the team of doctors decided to let me go.  I had to learn to give myself shots and had a list of five doctors to follow up with as well as a strict medicine schedule and diet.  Soon euphoria turned to fear.
I had left hospitals twice and three times returned in agony.  My body did not like leaving too much.  I was a little nauseous, and felt the anxiety of coming home.  When I got home I took a nap, and the family made sloppy Joe's and tater tots for dinner.  What could be more normal then comfort food?
Waking up this morning to the sounds of the house and family moving around was soothing.  I am enjoying our views which I didn't think I would ever be able to enjoy again.  I know there is much more to come in my healing but today is a good day.