December 29, 2012

" Don’t tell me her name; I don’t need to know it, to cry for her"

Gang rape victim dies in Singapore hospital. This is in Top 10 in Yahoo's "trending now".
Grief is immeasurable, there are no words to describe how I feel. My heart goes out to her family, friends and relatives. It is appalling, outrageous and unbelievable, but it happened. May she rest in peace and may she never be forgotten. Anonymous victim of shocking crime.

Violence against women is not uncommon. Violence is everywhere, not just against women for sure. Many die in vain, but it should not be that way. This case has world wide attention, but many other victims of violent crimes never gain this amount of attention. We think nothing about boarding a bus, it is meant to take us to our destination. Motor vehicle accidents again are common, but not gang rapes!!!! None us expects to be brutally attacked, raped or killed in a bus, train or airplane. Car and plane crashes happen, they are unavoidable, but rape can be prevented. What went on in these young men's minds, what prompted them to do what they did? Alcohol, drugs, whatever gave them the idea of damaging the two strangers' bodies, injuries that would eventually cause one of them to die.

Young men? Boys? Criminals? Rapists and murderers? They all need to be punished- in this case I totally support capital punishment. They have to die for what they did. Alcohol may have conveniently buried all memories "I was not there, I didn't do anything..", but death of this girl is true. Can they now be honest and truthful?
These were no men, no boys, but brutal monsters. Eye for an eye. May they all face firing squad. Let them beg on their knees for mercy, which will never come. Many will celebrate when those monsters are dead. Haven't we already had enough? These monsters must become examples to the rest of the world. This crime is now resting on their shoulders, and only theirs. I feel no pity toward them. Let them die.

Does the society make our youngsters feel that drugs, violence, sexual promiscuity, rape are the 'norm' and ok?

None of this will bring this poor soul back. She did not invite anyone to attack her or choose this day as the day she would die. None of this will make her male friend's injuries heal any faster. None of this will wipe this terrible experience out of his memory. 45 minutes of horrendous attack and NO ONE stopped the nightmare. As if it all is a movie scene. One of the worst ever scenes.
I know... I was not in that bus, but why did no one act?
One person against these monsters probably has no chance, not alone. Monsters were powered by the Devil himself. Totally pointless,senseless, sick. Will they themselves remember every single detail of the attack? Will they hate themselves that much that they commit suicide? One cannot possibly live knowing this is what they have done, and it cannot be undone. Those moments will never return. Those who are left behind, have to deal with this and it will not be easy, nor it can ever be forgotten.

This added to the sorrow, madness and sadness of 2012.


http://nilanjanaroy.com/2012/12/29/for-anonymous/ Nilanjana Roy writes in her blog "Some cases stop being cases. Sometimes, an atrocity bites so deep that we have no armor against it, and that was what happened with the 23-year-old medical student, the one who left a cinema hall and boarded the wrong bus, whose intestines were so badly damaged that the injuries listed on the FIR report made hardened doctors, and then the capital city, cry for her pain."

"On a long road, miles to go
Its winding and cold and its covered with snow
But I ask you what we all want to know
Where are we going from here...

Lines on my face, lines on my hands
Lead to a future I don't understand
Some things don't go as they're planned...
Where are we going from here...

Tracing the trails through the mirrors of time
Spinning in circles with riddles in rhyme
We lose our way, trying to find
Searching to find our way home...
Trying to find our way home...

As the day dies, with tears in our eyes
There's too few hellos and too many goodbyes
Silence answers our cries...where are we going from here...

We're all on this road, with miles to go
Braving new pathways into the unknown
But who do you ask, when no one really knows
Where we are going from here..."

- Blackmore's Night: Where are we going from here

December 28, 2012

Blackmore's Night: Where are we going from here

Anxiety Attacks


Radioactive iodine: done. Treatment completed. Scans completed. Realization that time is an illusion.
I spent 3 days in Hospital- somewhere there in the distance in that photo above. After those 3 days I was out on pass for two days, and returned for Thyroid WBS. I don't have official report yet, but I know for sure it is clear.
CLEAR!!
One of the most awful anxiety attacks hit me when I was in hotel for those two days. It may have been the shock of realizing what had been going for the past few days. As if I had been imprisoned, with contagious disease. Radioactive signs everywhere.Toxicity. Traumatic. Pretty much everything was covered with bed protectors, those white pads that they also call incontinence pads. Disposable, sterile, windows high up close to ceiling. I was truly in a prison. Each time, when I was not yet radioactive and in isolation,  when I opened the door and walked out, I felt as if I was prisoner escaping. It was almost relief to return to the room again.
Huge concern for me was that I don't have the emotional strength to deal with this. I struggled with depression after my 1st encounter with cancer in 2007.
Food was low-iodine, it was tasteless, colorless and not at all appetizing. Disposable cutlery, plates, tray. Cold soup, cold corn, always the same pasta, cucumbers and lemon slices. Cucumber salad was sealed in a plastic container, so tight that I always managed to break it when I attempted to open the lid. Totally burglar proof! No dairy, no bread, no salt. Here I was thinking, reading the menu that I would have tasty pasta with spicy sauce, lemon pie and lentil soup. Well, this is what it was:
I lost weight, not huge amount, and regrettably that extra weight has returned. Never mind the weight, cancer is dead and gone. I was still angry. Blood pressure reflected this. 188/110. Angry Birds. Coffee shop in the hospital served me delicious cocktails and coffee, which was strong and gave me palpitations. One good thing, among many others, that resulted from hospital stay was that I quit drinking coffee and black tea. Since then I have had green tea. Craving for coffee- no, that feeling was left behind in hospital.
Most of the staff members were ok, but then there were those who were clearly afraid of me and my temper tantrums. Then there were the patronizing ones. Nasty ones. One morning it appeared that no breakfast would be served. At 10am I left my room, visited the coffee shop and  bought cup of coffee and strawberry cocktail. I returned, stopped at nurses' station and yelled at the ward clerk. Who is in charge of this shift???!!! When I get angry, I get upset and start crying. This time was no exception and all the dignity I had walked in with vanished within seconds. Charge nurse followed me into the room AKA cell, and offered to bring breakfast in. Same old stuff, and I said no. Soon afterward, physician came in with the same nurse and asked if I need to see a PSYCHIATRIST? Do I? Hell no. What's going on with these people? And what is going on with me? Just because idiots forgot about me. In hindsight, perhaps I could have chosen an entirely different approach. What happened to manners? My mom certainly did not teach me to behave this way. At the time it felt very right, justified- how could you guys leave patient alone in the room, not asking even once if they are ok!!!
The truth is I don't have a bad attitude and behave like this all the time. It was all reserved for this occasion.

Later that day my friend rescued me from the jail and took me for lunch in Steakhouse. Cool! I still had to stick to low-iodine food, but it was fantastic to get out. Thank you K, it was one of those lunches I will never forget.
I went to bed happy that evening, woke up at 4am thinking I was in my own bed.

Nuclear med tech K (yes, another K), walked in next day, and said it is the DOSING time. Ok. She was followed by another tech. K was smiling, looking cheerful and optimistic and I told her she was the first genuinely happy person who had entered my room. Premed was Zofran (ondansetron).
55mCI of radioactive iodine 131, T 1/2 eight days or so. Two capsules, not much different from any other capsules I have seen in my life.. pretty anticlimactic. Setting up the scene took longer than swallowing them capsules. Right after that all the nuclear medicine peeps left the room, as if they had not even been there.  Geiger counter must have shown some awfully high reading.I wasn't allowed out of my room. First few hours went, clock was ticking. Nothing happened. I did not glow, my pee did not glow. I was not fluorescent green. :-/  No superpowers, nothing.
I thought "This isn't so bad. This is going to be just fine." And it was for 2-3 hours. Incredibly strong wave of nausea and vomiting kicked in and I spent most of the evening walking between The Room and restroom. I wanted painkiller- they brought me Tylenol. I took another Zofran from my own supply. I wanted an injection for nausea, but I was told no one can enter the room. I asked for sleeping tablet. It took its time to reach my room. By then I was annoyed, decided to take a shower and went to bed. Slept without the tablet. Angry. I was much closer to breaking.
Following morning I was told I am no longer radioactive and I can go home- but that I'd have to return after weekend for Thyroid WBS. Great, awesome, but I felt fatigued, sick and anxious. It took forever to book hotel, gather my thoughts and belongings, get a cab and transfer to the hotel. Sweet freedom.
Arriving in the hotel was weird- I felt I had no right being there. I had no hair. I was pale and sick looking. All these five star rooms and restaurants. My place was still in that prison, but at the same time I needed to go to a place where I didn't have to feel anything, or so I thought.

Anxiety attack: I crawled back into bed, took Valium, watched TV. Got out of bed, paced around the room, looked outside from the 33th floor and thought WOW, I am no longer in that awful prison cell.
Anxiety. I slept a bit. Went out to supermarket, but short walk there and back wiped me out, and I returned feeling shaky,sweaty and nauseous. Shower. More TV. No appetite. Everything tastes of metal. I felt as if I was falling apart and completely shut down. I took another Valium, knowing that my body is already so full of drugs that I may not need more. I wanted to cry, but could not. Should I really have accepted or rejected this treatment? I signed that consent form, after signing read the small print.

At the same time there was a feeling of lightness, silence, hope. At the time I did not yet have the scan results, but I felt that cancer was gone. It was truly gone. We killed the sucker! Could my horse, who died on November 21, 2012 taken this disease with him? Physical wounds may have healed, but what remains is deep and actually quite painful- question of how did I in the first place get myself tangled up with cancer?  I look over at all the bottles of pills on the table and I just want to cry; how  did my life get like this?

I have been through a life changing experience so now it is time to change my lifestyle to reflect that.
After-effects: my memory seems worse- or perhaps just more selective? I don't sleep well. I lost quite a lot of hair- combination of treatment and stress, I think. It was getting ridiculous, waking up in the morning, more hair on the pillow. That itself made me feel sick so I shaved it all off in hospital. Bald patches still keep shining through, but at least it is growing back in some parts. Black and grey! It was a very plain mousy brown before. My arrogance that wigs are for wimps has turned to humble pie. I do own two wigs, courtesy of my friend KG. Scarves and hats of all types have become best friends though-not the wigs. I realize now that I also chose to have treatment because I was hoping it would kill me, if the disease itself did not. Neither happened. I pushed forward, and I'm back.

Those days have gone, difficult and challenging moments passed. Time truly is an illusion. It's a blank slate now - new beginning, endless possibilities. It will work itself out somehow.

"The day will pass, like many other days that have been and are yet to be. With its various ups and downs. And lots of crazy and wonderful efforts of people to read into, and express, deep and significant meanings and insights. Many will be inspired, others will be afraid. Some will hold their breath while others will not even notice or care."
- Shiv Charan Singh


Blackmore's Night: Hanging Tree

December 20, 2012

Back home

"According to Elizabeth Kubler-Ross, when we are dying or have suffered a catastrophic loss, we all move through five distinct stages of grief. We go into denial, because the loss is so unthinkable, we can't imagine it's true. We become angry with everyone - angry with survivors, angry with ourselves. Then we bargain. We offer everything we have. We offer up our souls in exchange for just one more day. When the bargaining has failed and the anger is too hard to maintain, we fall into depression, despair, until finally we have to accept that we have done everything we can. We let go. We let go and move into acceptance."
Meredith in Grey's Anatomy

November 29, 2012

RAI

I'm so incredibly tired, physically, mentally. 2012 has been challenging. My father died in summer. My grandma died later in the fall. My horse died 1 week and 1 day ago.

Cancer relapsed and I am going for RAI on Monday. I don't handle being isolated very well, but perhaps this is my chance to learn.

Not everything in 2012 has been bad. I have made good friends with K, fellow cancer patient, one of the bravest people I have ever known. I have made lots of progress on the new- not so new anymore- horse and that is very rewarding. I started new job in spring, and have enjoyed it tremendously.

I had a great vacation in Wyoming in August, one of those experiences I always wanted and needed.
I also had an awesome visit at MD Anderson cancer Center- can you really say it is awesome? As soon as I stepped into the hospital, it was as if it was not a hospital at all. I remember the kindness of people, staff, patients. I remember the aquarium and delicious yummy Sara Lee red velvet cupcakes.
I had great time in Herrmann Park. 

I don't know what next week brings along... but it is one step at a time. I'll be sure to update the blog and report all about what RAI really does to you. Another survival guide!


November 23, 2012

Ad Gurey Nameh

Sweetest horse, who ever lived..

"May the Long Time Sun
Shine upon you
All love surround you
And the pure light
within you
Guide your way on
Guide your way on

May the Long Time Sun
Shine upon you
All love surround you
And the pure light
within you
Guide your way on
Guide your way on"
- Snatam Kaur

November 22, 2012

In memory of Sagar, the sweetest horse that ever lived.

RIP Sagar 1984-2012
You were loved by everyone. God loves you. Death is not the end, it is another beginning and we will meet again. In the meantime, my precious horse, please find my father and grandma, who passed away this year. Lots beautiful and brilliant people have passed away this year.
You lived long beautiful life.I enjoyed every moment I spent with you. When the volcano erupted in Iceland, nothing could have stopped me coming back to you. By any means. It took 5 days, but I made it. Airport closures did not stop me, ash cloud did not stop me.
I loved you even when you bolted back to the stable, galloping and bucking.
I loved you even when you accidentally bit my thumb.
You loved grooming me, smelling my hair. You loved your watermelon.
You were a pleasure to ride. You taught me lots, you did not spook at things, well, most of the time you did not.
1984 when you were born, I was at school, being bullied every day.
I am devastated. There are no words to describe how I feel.

"
Deep in the meadow, under the willow
A bed of grass, a soft green pillow
Lay down your head, and close your sleepy eyes
And when again they open, the sun will rise.
Here it’s safe, here it’s warm
Here the daisies guard you from every harm
Here your dreams are sweet and tomorrow brings them true
Here is the place where I love you.

Deep in the meadow, hidden far away
A cloak of leaves, a moonbeam ray
Forget your woes and let your troubles lay
And when again it’s morning, they’ll wash away.
Here it’s safe, here it’s warm

Here the daisies guard you from every harm
Here your dreams are sweet and tomorrow brings them true
Here is the place where I love you."
- Katniss Everdeen

November 01, 2012

Verdict

Thyroid WBS results are finally out: treatment option, the only one is radioactive iodine, aka RAI. It will probably be done sometime in this month. Happy Halloween.
I was hoping that the scan result would be clear. It was not.
I was hoping that it would not need treatment. It does.
I was hoping external radiotherapy would have been an option. It is not.

I'm just going to let it go, and go with the flow. Thanks be to God that there is something that can be done.


October 17, 2012

How to survive Thyroid WBS, preparation by Thyrogen

Thyrogen, AKA recombinant TSH is familiar to some of us.
This was my first encounter with Thyrogen- and I do not regret it.
Thyrogen is given as injections in a muscle, and I was lucky that colleagues at work could help. I guess one of the best and most recommended injection site is your buttocks.
Injection itself did not hurt much at all. Perhaps because some very skilled colleagues were there... There aren't much of Thyrogen in the syringe, and if it is given slowly, then there shouldn't be much pain. That's the good part of it. The very best part is of course that there is no need to come off Synthroid weeks before scan, suffer the low-iodine diet and feel miserable!
I would recommend Thyrogen, even if you are not fond of needles and injections. It is worth it.
I was prepared for side-effects too- nausea and vomiting weren't good options for me who had to fly to another city and hospital for the Thyroid WBS. No one likes nausea and vomiting anyway.. And then low iodine diet does not always stimulate appetite. Shame if it all was expelled out in an instant!
I had some nausea- I was on Zofran (ondansetron) and nausea was not an issue. Headache was. It was ever present, nothing seemed to help. Only when I fell asleep it was somewhat relieved on the following morning. No big deal really, compared to what weeks without Synthroid would do. Been there, done that too and never again want to go through the same. I would not wish it to my worst enemy either.

Thyroid WBS was pretty easy. Swallowing liquid iodine (tiny dose measured in a syringe) was easy, even for me who finds swallowing tablets very hard. I was told to SWALLOW it right away, not swirl it in my mouth, which I must have done, involuntarily and unintentionally. If someone tells you to swallow, not taste, of course there may be temptation to TASTE it too. Which is what I did, and I think it showed as increased uptake in the mouth and upper throat region. Perhaps this also explains the pain and discomfort I had in my mouth- salivary glands appeared swell up. But hey, not a big deal- I was on Thyrogen! My head felt very very round, congested, huge. On the following morning most of the weird sensations had gone. I was told to drink water and I did as if my life depended on it: close to 3 liters that day. Maybe more. All I know is that I was in the restroom numerous times!

Result of the scan is another topic for another blog post... I have a feeling radioactive iodine, mega high dose is expected... Good old RAI.

I'm not sure about whether or not insurance covers Thyrogen. Some may not.
I'm also not sure if Thyrogen is available everywhere- there have been reports of shortages.

This is what Thyrogen website says:

"In order to prepare you for ablation, your physician must stimulate remaining thyroid tissue to absorb the radioactive iodine that you ingest in the form of a pill or liquid. Stimulation can be achieved in two ways. The first method, withholding thyroid hormone, was used exclusively until Thyrogen was introduced. Withholding thyroid hormone replacement allowed thyroid hormone levels to drop before ablation, therefore making you hypothyroid. The second option involves the use of Thyrogen (recombinant human form of TSH) which can be injected into patients prior to ablation thus avoiding hypothyroidism. In essence, Thyrogen allows your physician to start you on thyroid hormone therapy right after your surgery, thereby avoiding the signs and symptoms of hypothyroidism."
http://www.thyrogen.com/patient/about/thy_pt_about_thyrogen.asp 


October 11, 2012

Horses








October Breast Cancer Awareness Month- Mammogram survival guide

There are huge number of websites that list risk factors, symptoms, prognosis, treatment options etc for breast cancer. There is no need to repeat them here. www.mdanderson.org is one of my favorites, not just for finding out about cure rates, but for patient stories! Those are mostly positive, encouraging and good adverts for the cancer center too. Sure, people get cured from cancer, some recover partially and some not..

When it comes to mammograms, you can not find bigger coward than I am. I was supposed to have my first mammogram when I turned 40, but I did not go. It was in the back of my mind more than once, but I always managed to push it further back and then it did not bother me for months and months. Until thyroid WBS discovered suspicious lymph nodes in January 2012. Awww. Mammogram time.

One benefits of working in hospital is that I can usually track down the people I need to talk to. This is how I found the radiologist, who works in mammograms, sitting her face glued onto computer screen examining films. I explained what the situation was, and that panic had set in. I do not want to have mammogram, but boo hoo I may really need it now and it is better to appear voluntarily, than being dragged in in handcuffs and shackles. That would be a cartoon moment! Sure. When I entered the radiologist's den, I did not expect to undergo mammogram in next few moments, but there I was, still not really wanting to be there, but at the same time quite fascinated by all that was going on.
Pain? Yes, there was some, but it's not as bad as e.g. broken bone. It is fleeting, momentary pain, that passes as soon as your breast is no longer squeezed between the "plates". At one point all I was seeing was black, realized I would pass out, but then the exam came to an end. It was not comfortable for sure. My pain threshold can be quite high, but it depends entirely on if I am in there voluntarily, depends on what's being done. Of course I tried to wriggle away from the pain/discomfort. No one really likes it, well, not all of us anyway. Pain caused by pap smear is almost intolerable, but somehow I have survived several of those too.. but that's another story another time.
Relief? Yes, it was done. Nothing malignant was found. I did not cry, pass out, laugh hysterically, run out screaming out of the exam room. I did not punch the radiology tech- who by the way one of the most compassionate individual I have ever met.
Humiliated? No, no. I can't say I was. Not at all. It was nowhere as bad as pap smear. Ask for female technologist if you feel more comfortable that way.
Would I go back again...? Yes, and no. I guess I would. With painkiller. I truly don't know if Brufen, Tylenol or similar would make any difference, but it is worth a try. Schedule mammogram sometime in your mid-cycle. It turned out that my period started the day after- perhaps this is why I had quite severe pain at times.
Don't believe everything they write in the Internet. Google can be your worst enemy as well as best friend when it comes to finding more information about mammograms. Don't take my word for it either, go and get it done. You can always run screaming out of the room, and never return. You could also have quite a good experience and it encourages you to go back. Take someone with you, take painkiller, take Valium, have a drink, but go anyway.

Encourage your female family members and friends to get it done too.

Medical Center







October 06, 2012

Stuck...

"Please let me take you
Out of the darkness and into the light
'Cause I have faith in you
That you're gonna make it through another night
Stop thinking about the easy way out
There's no need to go and blow the candle out
Because you're not done
You're far too young
And the best is yet to come"
Nickelback- Lullaby

Next week.. I am trying not to think about it. First step is Thyrogen injection... then hop on a plane and fly to another city and another hospital, which might actually feel like home by now.
I am trying not to cry. Trying not to go too far ahead and think about my options.
It is cancer, but it can be treated. I have to keep faith and hope that the cure is out there within my reach.
What am I really scared of? Needles? Sight of blood? Pain? Bad news? Good news? Waking up to reality, realizing all of a sudden that none of this was true?
Knocking myself out with Valium sounds like a very valid option, but then I would not living this, and would probably not learn anything at all. Would not remember a thing. Yes, that is good, but it just bypasses chapter in my life, chapter that I need to live.
I will know more for sure next week.

It does not change the fact that I am scared.

 

September 27, 2012

Fortunate

“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others; to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.”-Dalai Lama

September 25, 2012

Carlos Vareda: Palabras


"A word does not say anything
And at the same time it hides everything
Just as the wind that hides the water
Like the flowers that mud hides.

A glance does not say anything
And at the same time it says everything
Like rain on your face
Or an old treasure map

A truth does not say anything
And at the same time it hides everything
Like a bonfire that does not go out
Like a stone that is born dust.

If one day you need me, I will be nothing
And at the same time I will be everything
Because in your eyes are my wings
And the shore where I drown,
Because in your eyes are my wings
And the shore where I drown."

September 18, 2012

Cold

It is not cold here, not yet. I caught a cold, which started as sore throat and went on causing me to cough up most curious things. I did not know that stuff resided in my lungs!
It's just common cold, but still quite an annoyance. It belongs to the very same group along with spiders, gecko lizards, snakes, cancer and all sorts of unnecessary stuff. Some may not agree with adding gecko lizards in, I have been told they are "cute", but not in my opinion. So shove them all in the same group. But yes, if I had to choose between cancer and geckos, then lizards would be most welcome in house. I just don't like them...  [insert frightened face here].

I just watched "24" series seasons 1 and 2. Nodding off every now and then, wondering why I never used to watch 24. It's actually awesome. It is somewhat exciting to watch 24 for hours and hours, knowing the season will come into its end, but that another one will follow and there is no need to wait for a week for next episode. Yes!!! Not that watching TV is one of the most exciting pastimes in this world, but it kept me entertained while sneezing and coughing. I hope Tony Almeida did not catch my cold lol

October 14 is dedicated for blood tests, October 15 for Thyroid whole body scan, and luckily, this time I am on Thyrogen, not having to stop Synthroid for such a long time. I was wrecked in January, when I was waiting to undergo Thyroid WBS. Never again, I said. This time the doc listened to me, and provided me with Thyrogen, which I will attempt to inject myself two days before the scan. Yes, myself, absolutely. Why not? I have not had to stick a needle into anyone's flesh for quite some time. If you feel you cannot possible leave Synthroid, ask and beg and kick and scream for Thyrogen. I had to change hospital and doctor, before this was possible for me, but I knew I would not want to undergo anymore scans feeling totally exhausted. It was very deep seated exhaustion, no matter what I did, I felt I did not get enough rest...  [insert sleepy and exhausted faces here].

Ultrasound of thyroid shows some interesthting detailshhhh- awww Zyrtec is kicking in and forcing me to bed... I've not sneezed or coughed for at least 5 minutes now. Yepper!



September 10, 2012

Summer of 2012








Never mind..

News? No news is good news as they say..
- I spent great vacation in the USA in August, unforgettable moments in Wyoming. The scenery is breathtaking, and it is silent! Some of the best moments were spent outdoors. Of course I would like to return next summer.
- Unexpected visitor announced its presence.. weird looking lymph nodes in my neck. Thyroid whole body scan in October will guide us further and we'll decide about treatment. If the decision is in my hands, I would not choose radioactive iodine anymore. Another potential option- if cancer has not spread- is external radiotherapy, which I would choose under the circumstances. My opinion may not matter, I am not an expert, but I will pray that these two options will be available and that we can go ahead with EBRT, if necessary.
- No graphic details here- but what is the matter with my intestines...? Eating reasonable amounts, small portions,  minimum amount of fat and carbs, choosing fiber, green leafy vegetables, occasional glass of milk... Diarrhea is a constant companion! I don't believe this!!! It is making me most uncomfortable and I even ended up buying diapers in Wal-Mart. Just in case I have an accident in the car whilst driving from SD to WY. Undigested pieces of veggies..? Milk or no milk, wheat or no wheat, diarrhea is there for sure. Positive mind says it is caused by combination of stress and IBS. Negative mind says cancer has spread into colon. Neutral mind tells me to shut up and start preparing for colonoscopy.
- Old friend came back into picture! Not uninvited at all. I was truly happy to see him again. We had not met since 2003. Long time, but not that long we would have forgotten. He's fantastic, such a great person, always one of my best friends.

Possibility of having to deal with cancer recurrence is unnerving and I am not fond of hospitals and white coats. Latest clinic visit raised my blood pressure up in the sky, and nurses bombarded me with questions "Do you suffer from hypertension?". Of course I do, but it is always when I get to step into this godforsaken clinic. In my hand I was holding a cup of Starbucks coffee, that combined with anxiety surely stopped my BP from dropping down too low.


Then again, cancer may recur, we all know that. Good resources for me have been books "Planet Cancer" and "Crazy sexy cancer tips" (latter written by Kris Carr). That's why my boots- see above- will be walking me to and from hospital, from one investigation to another.

By the way, what is "Cancer card"?

June 22, 2012

A Big Little Life

"Each smallest act of kindness reverberates across great distances and spans of time, affecting lives unknown to the one whose generous spirit was the source of this good echo, because kindness is passed on and grows each time it is passed, until a simple courtesy becomes an act of selfless courage years later and far away. Likewise, each small meanness, each expression of hatred, each act of evil."

Dean Koontz: From the Corner of His Eye.

I have not been blogging for quite some time. Outcome of thyroid scans, blood tests etc is not yet clear, at least no treatment plan, if anything is required at all. I am not convinced it is recurrence, but then I am not an expert, even though I pretend to be one at times. "I know my body better than anyone else" etc, but it ain't always so.
Looking forward to vacation in the USA in August.
My father passed away on June 6. I feel as if he is somewhere very close to me- he's got to be somewhere for sure.

June 07, 2012

Rest in Peace my dear father

My father passed away yesterday.

April 12, 2012

Eye injury


Don't let your guard down and mind wander, when you handle household cleaning agents, chemicals etc. I bought bottle of Drain Opener- improved formula (!) yesterday to unblock kitchen sink. This particular drain opener is powder-like substance, and I have used it numerous times. I didn't expect any problems yesterday when I poured half of the contents into the drain, let it settle and then- I guess this is where it went horribly wrong- I poured boiling water into the drain.

In a split second it all exploded onto the kitchen counter, my clothes and eyes! One of the worst sensations of pain followed instantly. I knew it was not meant for eyes, and first thing I did was rinse both eyes under the tap. All the time I was thinking who'd I call to take me to emergency room. K, my neighbor came to rescue. I was told I have alkali burn in my right eye, and less damage in the left eye. I was told both eyes will need irrigation and whilst wondering how that would be carried out, one of the nurses took out an awful looking contact lens-like torture device called Morgan lens. It is very much like contact lens, but has tube attachment, which delivers a continuous flow of saline solution to the injured eye, or eyes in my case.. Most uncomfortable, but it was either this or something worse = losing my eyesight. Left eye received local anesthetic drops, right eye didn't. I didn't know whether to laugh or cry, ended up doing both, and my face and eyes turned into a puffy Cookie Monster creature.

K took above photo of me, while these lenses were in my eyes, but it ain't pretty sight. Perhaps less as black n white.

I was also told that most drain openers have alkaline pH, and alkaline burns and injuries are almost worse than acidic burns- alkaline burns continue to do the damage and go on until some divine or no so divine intervention stops the burn process.

My eyesight has almost recovered, burn in the right eye is 99% healed, but reading/typing is challenging, It feels as if I've got my head in a cloud, and letters look blurred. Thank God for spell-check.

Of course I did not read small print, as I had used this particular drain opener many times. In hindsight, that's exactly what should have happened, as well as wearing eye protection.

This was not meant as safety lecture, but next time you use a chemical, please read the small print, even if it is the very same bottle you picked up last time. It can save you from hours of agony.

February 19, 2012

Biopsy day

That's the day when biopsy will be done. At least attempted biopsy. Collection of lymph nodes will have to be checked out.
I am just not looking forward to someone approaching my neck with long needle.. can't think of anyone who would.

Life has its own way..
Friend of mine lost her father recently. Another one lost his mother, and another lost her unborn baby. It just does not feel ok, not like this. I cried myself to sleep last night, concerned about my friend, anxious about my own biopsy; finally fell asleep at 1am and waking up far too early at 5am... very much resembling Cookie Monster, puffy eyes and all. But hey wait, Cookie Monster's eyes are not puffy, are they?

January 26, 2012

U2 - Numb - (HD)

Numb

U2: Numb
Don't move
Don't talk out of time
Don't think
Don't worry
Everything's just fine
Just fine

Don't grab
Don't clutch
Don't hope for too much
Don't breathe
Don't achieve
Or grieve without leave

Don't check
Just balance on the fence
Don't answer
Don't ask
Don't try and make sense

Don't whisper
Don't talk
Don't run if you can walk
Don't cheat, compete
Don't miss the one beat

Don't travel by train
Don't eat
Don't spill
Don't piss in the drain
Don't make a will

Don't fill out any forms
Don't compensate
Don't cower
Don't crawl
Don't come around late
Don't hover at the gate

Don't take it on board
Don't fall on your sword
Just play another chord
If you feel you're getting bored
I feel numb
I feel numb
Too much is not enough
I feel numb
Don't change your brand Gimme what you got
Don't listen to the band
Don't gape Gimme what I don't get
Don't ape
Don't change your shape Gimme some more
Have another grape
Too much is not enough
I feel numb
I feel numb
Gimme some more
A piece of me, baby
I feel numb
Don't plead
Don't bridle
Don't shackle
Don't grind Gimme some more
Don't curve
Don't swerve I feel numb
Lie, die, serve Gimme some more
[ From: http://www.elyrics.net/read/u/u2-lyrics/numb-lyrics.html]
Don't theorize, realise, polarise I feel numb
Chance, dance,dismiss, apologise Gimme what you got
Gimme what I don't get
Gimme what you got
Too much is not enough
Don't spy I feel numb
Don't lie
Don't try
Imply
Detain
Explain
Start again I feel numb
I feel numb
Don't triumph
Don't coax
Don't cling
Don't hoax
Don't freak
Peak
Don't leak
Don't speak I feel numb
I feel numb
Don't project
Don't connect
Protect
Don't expect
Suggest
I feel numb
Don't project
Don't connect
Protect
Don't expect
Suggest
I feel numb
Don't struggle
Don't jerk
Don't collar
Don't work
Don't wish
Don't fish
Don't teach
Don't reach
I feel numb
Don't borrow Too much is not enough
Don't break I feel numb
Don't fence
Don't steal
Don't pass
Don't press
Don't try
Don't feel
Gimme some more
Don't touch I feel numb
Don't dive
Don't suffer
Don't rhyme
Don't fantasize
Don't rise
Don't lie
I feel numb
Don't project
Don't connect
Protect I feel numb
Don't expect
Suggest

Don't project
Don't connect
Protect I feel numb
Don't expect
Suggest

I feel numb

January 20, 2012

How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 3

9 days have passed since the Scan number 1.
6 days since the Scan number 2.
Back on Synthroid for 9 days.
I am beginning to see the difference. I no longer need to nap for hours and I've been back at work. My exercise tolerance is pretty poor and last riding lesson on Sunday Jan 15 was cut short, because I was short of breath all the time. Riding is not just being a passenger on horse-back. Why even bother to ride...? It is one of those things I do, to prove myself I can DO it, prove those all-mighty doctors wrong. Why should I stay indoors all the time and give up something I love doing? I'd ride for five minutes, if that's the best I can do.

6 weeks without Synthroid puts enormous pressure on both physical and mental body. Everyone, as we all are individuals, handles it in a different way. For some it's a real struggle, for some it is easier. At the time when all I could do was ask for sick leave, I felt like s..t and all I could think was go home and back to bed. Few days after that I felt like I needed to lay down on the floor, because of extreme fatigue. I think I could have slept 24 hours a day. On top of all that.. my period was extremely heavy! Yikes!!!
And then, mammogram! Nooo way. Yes, I've been postponing it since last August, knew very well it had to be done, but there were days when I simply forgot, and another few days and weeks when I chose to ignore it. Mammogram was clear, not at all as bad as I had thought. Uncomfortable, yes. I nearly passed out when they were taking the oblique views, but it was really over so quickly that I had to "time" to pass out. I could have taken Brufen or Tylenol or something beforehand, but it all happened so suddenly. I went to have a chat with radiologist and all of a sudden I found myself in the "mammo room". I had a chat with another patient, who was very clearly alive, breasts not crushed, not in pain, not attempting to get out the department as soon as possible. Feeling encouraged, I went and had it done. It is worse than blood test, but absolutely not worse that pap smear. Definitely an option, when it comes to choosing whether to break my arm or having mammogram. I'll take the mammogram. I never thought I'd say this.

I guess it's like giving birth, that experience of labor, you forget it eventually, when you see the "result"- baby. I also find most of the days without Synthroid are slowly disappearing into shadows and I don't recall what that fatigue was really like. Was it really that bad..? Well yes, when I felt bed was no longer an option, that I had to rest on the floor, yes it was bad.
I questioned the need of thyroid scans, all these without my meds and lack of follow-up. My TSH dropped down to 127 and no one thought it is necessary to call me and ask if I am ok. Thanks be to God my husband, co-workers and friends were around, even though husband travels frequently and does not stay at home for long periods of time.
Once the Scan number 1 was done, I called the good old endocrine doc and said I'm starting Synthroid TODAY, no matter what, and I did.
Right now endocrine doc is waiting for tumor marker blood results and I feel he is dragging his feet and waiting for what... miracle..? Something that would say the scan was wrong and there is no activity at all. He is in denial..? Aww poor man.

He has most gorgeous eyelashes.

I did not "survive" those six weeks with his eyelashes in my mind.
I got out of the house, I rode the horses, I took yoga classes at home in front of the TV. I slept, I cried, I laughed, I watched cartoons and DVD's. I talked to people and horses, not really remembering a lot of those conversations.. I'd have loved to have stamina and courage to stay 100% with it, physically and mentally fit, but no, I could not do it.
6 weeks eventually comes to an end..

January 14, 2012

How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 2




Thyroid WBS: painless, but takes a bit of time, so wrap up warm. Most of us, who are severely hypothyroid, are already cold, and I wish I had brought woolly socks and cardigan to wear. I had to get the scan done twice; second one took just 20 minutes, but first one.. seems like hours and hours. Technician, who "did" my first scan was there for the second one too, but his facial expression seemed as if... someone had burst his bubble. Deflated his tires. Planted a chewed chewing gum in his hair. Locked himself out of the house in 32 F. Oooops. and how am I supposed to feel then..? All of the above?
I actually felt nothing, just fatigued and brain fog has not lifted yet. I forget to eat and drink, when I do remember, I feel whole lot better.
"Under the scanner" yesterday I was feeling cold (made a mental note to wear thermal underwear next time). Feeling cold and uncomfortable (bring your fluffy pillow and mattress too lol), brought tears in my eyes. Nuclear med doctor came to chat with me at the end of the scan: There two "small" areas that lit up like a Christmas tree. Two?
CT scan of the neck last Wednesday showed a bubble like structure, and I wondered what it was.

TSH 127.28. Free T3 0.26. Free Thyroxine <0.79. TSH high high high, rest of the low low low.

I did not feel "radioactive"nor I was glowing in the dark. Boo hoo. Of course I knew that, but could not resist the temptation to ask Will I glow if I wake up at night? I might not need lights in the restroom then..? Awww that look of disbelief in their eyes. Gotcha!

Never give up your sense of humor, in fact now is the time to become wicked and keep it up.

When facing the mirror, and puffy eyed stranger stares back at you; YES it is you. Still you. Make the most of it. Milk it, as they say. Use the Cancer card. Read my blog and comment.

I've got to deal with what comes next. I have four options, and next step is thyroid ultrasound and biopsy. Possible biopsy I say, as if I have any say in this, but actually truthfully I do. It is my body and I can use and abuse (pun intended) it the way I like lol.
I am very much aware that each of us have our own battles and challenges. Simple blood test and the sight of needle may just be enough for some- and that's ok. Do whatever it takes to get it done. Some stuff is awful, creepy, disgusting, humiliating etc, but whatever it takes. You decide.
Friend of mine has a horse, but is scared to ride. I also own one, and sometimes I'd rather not ride. Scared of falling off, scared of countless "what if" scenarios, but because options are limited; either you fall off or stay on, this sort of mind-game becomes boring. So I keep showing up in riding lessons, ride, do my best 99% of the time and I can say I am half way there. Somewhere.
Same applies to nasty stuff that happens in hospitals. We may not care about everything they do us, but we keep showing up, sometimes intoxicated, because right then it is IMPOSSIBLE to even think about quitting, it has to be done no matter how unpleasant.
I had TSH level and tumor marker bloods done last week, felt like shit, but had to get it done. I took friend of mine with me. He kept me endlessly entertained with just being there, being present. There are people like this. He also tells me dirty jokes every now and then and I bet he could make some people veryyyyy uncomfortable. Someone like him, take him with you to scans, tests etc and life's just tiny bit easier for you. I might ask if he'd like to have date with me in ultrasound. For dessert we'll have biopsy. How about that?

6 weeks is a long time without Synthroid, even with Cytomel added there to make life somewhat bearable, but the end of it will come. Eventually.
I wish I had been able to take three honest weeks off from work, but did I not think I could just breeze through this one too. Not a walk in the park. I can't over emphasize the importance of sleep and rest. Watching TV and facebooking are excellent, as well as getting outdoors every day. Walk around the block is already great.

Neuropathy, ever so welcome visitor, attacked my hands last week- no doubt because of low TSH. I can't type anymore.


January 09, 2012

How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 1

6 weeks- 1.5 months, 45 days approximately.
The hospital where I am going to have the scan has protocol that says stop Synthroid, start Cytomel for two weeks and then stop Cytomel too. TSH check prior to ingesting iodine 131 capsule. Now it looks simple enough written like this, and this is why I also thought six weeks would pose no challenge at all.
I stopped Synthroid in late November and felt almost normal. Cytomel caused right middle finger to twitch, and then proceeded to tremor so that I was totally unable to type and write- both essential skills in my work. Once Cytomel was gone, it was a rather rapid decline. Fatigue hit me first, then puffy eyes, fingers, toes. Then incredible tiredness. Then that sort of feeling that drove me to endo's office begging for magic solution, which in this case was sick leave.
You do not want to start cooking and planning weekly meal menus, when you feel this way. You might feel you need nothing to eat or drink at all. If you, like me had to stay on low-iodine diet for two weeks prior to iodine scan, that's another hurdle. I am very fond of bread and corn flakes and ice cream, and now having to limit those to almost zero was depressing. At the very beginning energy levels are still ok, it would really be worth planning some activities for those days off from work/school/studies, even if it just one activity a day. Worst for me was feeling I am trapped at home and there is no place to go. My horse and precious friends (thank you K, you know who you are!) kept me going, no matter how pale, tired, puffy and edematous I looked. I did feel at times that I couldn't go out at all looking like this, but I did.
Food cravings are another challenge! Carbs, carbs and more carbs! I succumbed twice and had spaghetti and garlic bread. Piece of chocolate on another occasion. I managed to find wheat free, salt free rye bread in one of the local stores, and it was a real treat!
When I made the effort to cook- stuffed peppers filled with onion, minced meat, garlic and mint and spices, I felt pretty much human again. Waiting for the real serious hypothyroidism to hit, and then begin to plan what and how to cook is just not always possible. The amount of energy that's spent in thinking and planning is just too much some days, and the easiest option then is reach for corn flakes and milk, or not eat at all. Both aren't good and we all know it- when I had spaghetti and garlic bread, I was just hungry and could not think about anything but food, preferably pasta, something very salty and tasty. I got all that- and felt no guilt either, not then, not today.
The diet is not 100% iodine free, but I guess as close as 100% as possible. It does not say "Thou shall not eat anything that contains iodine". It is a low iodine diet that sucks if you're on it long term and do not like the foods that you CAN eat. 2-3 weeks is pretty long term to me - of course nothing compared to diabetic, wheat free, renal etc diet. I'm just saying that maybe possibly one could cope without Synthroid, but with an added pain in the butt=diet it becomes much worse. Feels like there is no enjoyment left in life. Internet is full of low-iodine recipes, but if you've got no strength to get up and cook, then it is hard. If you plan ahead, prepare lunch, dinner and freeze them, then you are much better off I would say.

This is not the time to make long-term plans or financial decisions either.
Not the time to embark on major weight loss program, start training for marathon, even though some people may have done it.
There are days when "brain fog" just does not appear to clear. Can't read, can't write, type, remember what was discussed just moments ago. Your mood might be difficult to control- mine certainly was. Just feeling wrecked inside and outside, does not leave much empathy toward people, who carry on as normal, not having to worry about anything in the world.

Each of us have our own challenges to overcome, and preparing for thyroid scan is pretty simple and straightforward. Compare it with bone marrow transplant, major operation,recovery from burns, major financial loss, damage to property, violence, war,death of loved one, loss of limb or car crash. There is always something worse, but these just aren't on the top of the agenda when you can't get upstairs without getting short of breath. Each day is a step towards the goal, which is the scan, and then fingers crossed that it all goes well. "Be positive, think happy pink fluffy thoughts" and it will all be ok.
As long as it's done, not postponed when you've reached this far and then coping with the outcome whatever it is becomes just tiny bit easier to handle.
My mind, the state it is in right now, can't handle much more information- which really is just as well, because I could and should think about What if's... What if the scan is not clear..? Blood tests have already shown something suspicious in tumor markers in my case, so I really need a clean and clear scan. Let this be the last scan too. Pliiiizzzz?

There is something called Thyrogen, recombinant TSH, which has been used in preparation for thyroid scan, but our hospital does not have protocol for it in nuclear medicine. What century are we in? Can we not get it for our patients and make their lives easier? I've read about Thyrogen, but it is difficult to recall what I have read right now.. Brain fog. My aunt, who had chemo for breast cancer, always talked about "chemo brain". Brain fog should keep me and my co-workers entertained, when I return to work soon.

I cried last week, once, when there was something I needed to do- sign a paper, unbelievable. Simple stuff in normal circumstances, but not right then. Husband drove me to the office, I threw up in the car once on our way and once on our way back. I got into an argument at the "office" about signing the document, feeling nauseous and feeling like I could have thrown up on that idiot who was grinning behind the desk- no doubt feeling protected there. Since there was no way of attacking them physically (as if I would do that normally..), verbal abuse was the way to go. They wanted me to sign the document was well and a FINGERPRINT!!!!! Yo man, I must have not heard you correctly, but yes, there is was, ink pad right in front me. Ink effing pad! Fingerprint! All women must give their fingerprint. That was in Jurassic Era, mate. I asked that grinning idiot, whether he thinks I'm unable to read or write. Grin as response, nothing else and gesture towards the ink pad. Ok, they won, they got my fingerprint, perhaps not the one they initially wanted: my Middle Finger. Yay baby. On the way back home I cried and husband could say nothing to make me feel better.
I have since recovered, but this goes to show moods are very volatile during hypothyroid phase.

Part 2 will follow- perhaps it will make more sense then.
At least I will have scan results by then.
By then brain fog will have been lifted too, and I can see Myself in the mirror again, not some puffy Cookie monster.
Part 2 will hopefully contain something more positive- such as what did I learn from all this. If anything.

January 03, 2012