Final Cancer Scan

Last Thursday was the 'big event.' After a series of blood tests, an oncologist visit, I was on my way to the Methodist Hospital, nervous and anticipating the full-body cancer scan. 

I'm not a big fan of needles and the nervousness grew waiting for the assistant to appear in the small room.  Wearing a hospital gown, sweating and thinking. Pacing, humming and examining the sterile room did zero to calm my anxiety. Needles and tomb-like contraptions that constantly clang (making a gal wonder if a weird entity is doing its best to join in the fun) happens to not be on my favorite activity list.

I admit it. I overreacted on the before thought of the scan but I did mention that I'm not a big fan of being stuck and entombed. 

Overall, it wasn't so bad. She injected a glucose solution into my veins and said "no reading or thinking." What? I was supposed to remain calm with no worries? 'Yep', she had the nerve to say. The brain has the potential to use the glucose. If the brain consumes its fill before the tumors get a bite, it's another dose. Tumors are 'hungry lil buggers' and relaxing - not thinking - would give 'first nibbles' to the life invaders. 

Say no more. I'm calm. With the help of the glucose, my mind went to another zone – sugar euphoria. The glucose injection made me feel as if I'd eaten a large holiday, carb-filled meal. Blissfully, in a sugar sleep state, remembering only 1% of the ordeal, it was divine.

Afterwards, the 3-hour wait for the oncologist's results went fast. My hubby is the 'bestest.' He kept me entertained. I know bestest is not a word but it's my word to describe him. Throughout my cancer ordeal, my hubby has been a constant companion. Keeping the schedules organized for my treatment, he'd wake me up every morning to the smell of coffee and breakfast. Reminding me to 'pop' my anxiety pill and connect my IPOD, he'd whisk me to the car, urge me to sleep during the ride to the appointment, deposit me at the radiation sign-up desk to begin treatment and then he'd wait. After treatment with a drink and snack for me in his hand, we'd begin the journey home, I'd sleep, and he'd begin his workday. Not once did I hear him complain. 

I've always known. He's my fiercest defender. Without a glance or verbal acknowledgement to offenders, he'll stand by my side. I've often asked him why he doesn't see a friend anymore and he'll say, "Why? If someone has the audacity to be rude to you…that person isn't a very good friend to me." That's my hubby. He's my protector helping me survive life.  With his help, I survived cancer. My hubby is my best friend. He is the 'bestest.'

In the oncologist's office, once again anxiety reared its ugly head. My hubby picks up an outdated magazine and begins to read out loud events that happened years ago. Giving him my desperate look, he grins, "What?" Without saying a word, he knows. The magazine dear…how old is the darn magazine? He promptly shows me the cover and informs me that it's not outdated but a 'classic.' He continues to read. We are laughing when the doctor comes into the room. She's impressed. Another example on what I mean about my hubby being the bestest. Left on my own, sitting here waiting, I'd probably burst into tears, thinking the worst and now I am laughing about a magazine, before my oncologist gives me news about the results. 

When she smiles - I know. When she begins the congrats - it sinks in. I'm cancer-free.

I did the happy dance down the halls of the Methodist Hospital. Those who really know me know I care less what others think, and by the way, that counts double when I'm in a happy mood dance mode. If you're a stranger and I'll never see you again, that counts triple, so the happy dance continued down to the parking garage. My motto: Life is too short; don't let others steal your joy!

Dancing down to the car, my hubby smiled. He cares less what others think too. Loves the child in me. Loves me for being me. He loves to see the cancer-free happy dance. I'm a lucky gal!

The oncologist stated the symptoms I am having as normal for radiation in the orbital area:

1)      Occasionally upon waking, noticing the left-side/under the eye/ bruise discoloration and swelling.

2)      Upon waking, left-eye tears. Tearing helps to protect the retina.

3)      Energy level not fully recovered. Recommends rest. Finding a positive outlet for exercise to increase the energy level.

4)      Headaches relieve with Advil.

5)      Hair and lashes continue to slightly thin. No worries. Both will come back.

Waterfall

A life is an endless stream.
Yeah there are rapids
but most people don't get to the waterfall
well we did!
We will fight together
to get through this endless nightmare.
Together we will fight this
and make it back safe from this waterfall.

Last Radiation Treatment

Today was my last radiation treatment for Orbital MALT Lymphoma. The doctor quoted a time span for the radiation to leave my body, 3 weeks. I'm looking forward to stop wearing sunglasses wherever there are fluorescent or bright lights, being able to enjoy the sunny days outside, wearing make-up and obtaining my energy level again. 

In the beginning, silence in dealing with cancer was the best alternative and then, my daughter and closest friends encouraged me to share my experience with others. To be honest, I was petrified of having OML, worried that people would maliciously gossip and I'd walk into a store, meet an individual and discover horrific rumors circulating around town – already one foot in the grave, hairless, blind in one eye - you name it. Ha-ha. With the help of loving friends and family, I decided to swallow my pride. 

One certain friend, KBL, was the main inspiration. Sending wonderful personal prayers, her faith in God, truly touched my heart. She is the most beautiful individual – inside and out – and her faith inspired me to reach out to others. Reaching out to friends was the best decision. Thanks to all of my wonderful friends for being there for me!  Suffering with a small group isn't the answer. Sharing with others has been the best solution to seeing me through these uncertain times. 

Researching on the internet was the main factor on creating my blog for OML. Frightening information about the disease sent me into frenzy. Was it true or false? The best way to arrive with the truth was to write about my experience. Being an asthmatic, claustrophobic and vain woman relating her experience with radiation treatments had the initial drama of the posts I had read on the internet.  I wanted to write truthfully about the mask, the radiation treatments, and debunk misinformation. I sincerely hope that the blog will help other OML patients on their journey to healing, giving faith and encouragement.

Wagging the mask through the medical center and to the parking garage was an uplifting walk. It was mine to do with as I please. The radiation team laughed when I asked about making it a piñata. Hanging it from a tree and using a big stick seemed a perfectly normal reaction to a claustrophobic and asthmatic individual who has not gotten warm and cuddly with the snap down mask. Found out, it's next to impossible to shatter the darn thing into smithereens so….decorating is still on the agenda. Ha-ha. Stay tuned for the created mask – scary or sweet – who knows?

For those with OML: Recovering from radiation treatments, around my left eye, it looks as if it has sunburned and there is a feeling of a dull ache.  The information from the doctor: the redness will worsen during the healing period and itch. It's important not to rub or scratch the eye. Cataracts are on the agenda. No hot or cold packs for the eye so sometimes I cheat with a quick swipe of very warm water on my face during the shower. (I'll be so glad to hold my face under the shower and let the water flow.) Absolutely NO make-up applied. Didn't realize metals are in make-up and the chance of melanoma is increased. Sunglasses worn outside and during shopping since the eye needs added protection. The skin is dry (all over body) and the radiation team handed out samples with coupons and recommended a lotion, Aquaphor.

The Vain Thing: The first thing I do each morning is to look in the mirror to check to see if my bangs and eyelashes are still intact. So far, the bangs have thinned a bit but my lashes are still batting. I'll definitely blog if upon waking one morning my bangs, splotches of hair or lashes disappear. Ha-ha.

In six weeks, a scheduled MRI scan to guarantee I'm cancer-free and I know the waiting for the end results will be the hardest. I'll fill my days with a little primping, enjoying the sunshine, pruning roses and catching up on gardening. Time will go by quickly if I stop to smell the roses and remember the love and support that's in place for my recovery. I'm so thankful for my supportive hubby, friends and family. My life is sweeter and richer because of 'you.'  

Since today was my last day of treatment, the tradition at the Methodist Hospital is to take a photo and read out loud to those in the waiting area an affirmation written on a plaque that's hanging on a wall, and then ring the bell three times. After a round of applause, hoots and congratulations for completing treatments, and with the mask in tow, I whispered a prayer for those still fighting the battle of cancer.  Walking out of the double doors, I looked up at my hubby, smiling, "Ladies and gentlemen! May I have your attention, please! Brenda, has now left the building."

On my doorstep, a gorgeous arrangement of lilies and freesias welcomed me home. My thoughtful and sweet daughter with these loving words of encouragement touched my heart. 'Congratulations on your last treatment! Your bravery and strength has amazed me. You are truly an inspiration to me and I am so lucky to be able to call you my mother.'  In an adaption to Romans 8:31, if my family and friends are for me, who can be against me?  I am ONE LUCKY gal!

Self-Pity by D H Lawrence

 I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself.

Radiation Sessions

First Day of Radiation

 Radiation treatment at the Dunn Towers began this morning. To be honest, I freaked two times with the onset of the mask. The radiologist insisting additional calming meds gave me the 'oomph' to go into a deep breathing mode to calm myself down. After the removal of the mask it shrank as it dried. The mask felt so tight on my face, it was mashing down my nose making me even more claustrophobic. 

On the third attempt, I had enough courage for the snaps to stay bolted down to the table - it is a table, not a bed. In fact, it is a very hard table designed especially for radiation – color coded. Artistic looking table with a steel frame. 

My daughter, Monique, is designing special songs for my radiation treatment. Isn't she sweet? It'll make my time spent on the bed of steel, strapped and snapped down, a little bit easier to endure.

Onward I go…'Ho Ho Ho.'

  
Star Dust

heart's desire
sired us
but can stardust
cure the virus
that the spirits
gave a meaning
while my head
was dreaming
screaming in
a frame mainly
chained I was
forced to lie
myself awake
she tells me when
they make mistakes
people die in here

Second Day of Radiation

For a while now, I have been frightened to go out and about with all the colds and sicknesses going around in the crowds.  The thought of being ill during my radiation treatments – under the mask - keeps me continuously dousing my hands with sanitizer.  Thoughts of a stuffy nose or a hacking cough wearing the mask sends chills of dread down my spine - rather be safe than sorry.

For years, the traditional handshake eliminated from greeting others always requires an explanation. I have gotten many strange looks during this time. But that is okay! I get queasy with the thought of where or what the hand touched before being extended for me to shake. Being a germ phobic is part of my D.N.A.. In addition, I am proud to say that all these years (even with immune deficiency disorder) head colds and viruses have eluded me until now. Saying now because one of my doctors explained to me that Orbital MALT Lymphoma is a cancer caused by a virus or bacteria. Other doctors say that it is a genetic cancer. Time will tell.

My hubby has a different viewpoint on going into the world and has insisted 'it does the body good.'  After two days with radiation and a metal taste in my mouth, he is more concerned with nutrition. He thinks every day after treatment, a nutritional bite to eat is more important than worries about issues that may never happen. I am trying to agree, even if I am hesitant.

My nurse weighs me in every day during appointment time and today noticed a 3-lb drop since yesterday. Do not know if it is because when nervous, food thoughts disappear or the metallic taste in my mouth or the radiation itself.

During the radiation, I see bright flashing lights and hear the radiation with an automatic machine gun sound. Sometimes a high pitch, the other times it is a low sound, always-rapid sounds go through your head. The bed moves into position, x-rays given to Dr. Blanco to study, and then another session starts. As I have said before, the bed is made of steel and very hard. Even the headrest is rock solid making laying down flat very uncomfortable.

I am feeling worse today. Tired and my ears are hurting. A friend says that is a sign to alert the doctor to guaranty no hearing loss - first on my agenda of questions. Even though my eye is sore and a headache from wearing the mask, I am feeling optimistic...no upset stomach or a dizzy head.

I am so thankful for my family and friends for keeping me in their prayers!

Third Day of Radiation

Radiation caught-up with me today. On a positive note: the sweets I am baking for Christmas don't appeal to my taste buds. Guess it will keep the sugary calories at bay. I will have 3 days off for the holidays, returning for radiation therapy on Tuesday. I'm hoping my taste buds and stomach settles down to enjoy the Christmas meal.

Have a Merry Christmas! Love to all! xoxo

Second Week of Radiation

The holidays postponed my treatment until Tuesday. On Christmas day, the food tasted delicious and I ate slowly, but an hour later, it did not stay down. I have found drinking beverages helps the queasiness and for some reason orange juice settles my stomach - so does nibbling on ginger cookies.

I was dreading going back under the mask. Once again, I panicked and the radiologist team was patient, waiting for the fear to subside. I have found taking my calming meds one hour before arriving at the hospital works better than thirty minutes before treatment. I am calmer arriving and during the mask treatment.

My fears has lessened since receiving an iPod Nano for Christmas. Timing the songs with the length of the treatment is actually helping. The scariest part is hearing the snaps go into place and footsteps leaving you all alone in the treatment room. It is a helpless feeling. Keeping the mind busy with the sound of music makes it more tolerable.

As the week went on...I got braver. Hopefully, this coming week, it'll be a piece of cake to snap 'n go without a care in the world.

This poem is dedicated to the friends I have met recently. Some have lost all their hair...even a child. Keep them in your prayers!

No One 

Author: Mary Winton - Trimar

No one said it was going to be easy
No one said it was going to be fair
No one said it was going to be breezy
But they did say I would lose my hair

No one said I would ever be pretty
No one said I would ever be smart
No one said I would ever be witty
But they do say I have a good heart

No one said that there wouldn’t be crying
No one said that there wouldn’t be fears
No one said that there wouldn’t be trying
But they did say I’d be around for years

No one said that the doctor is right
No one said that the doctor is wrong
No one said that the doctor is trite
But they do say you have to be strong

No one knows what tomorrow will show
No one knows what next week will unfold
No one knows what will happen in an hour from now
But they did say you now have control

Third Week of Radiation 

 

This week it seems that every time I become still, I fall asleep – very tired. In the car, coming home from the treatments is naptime and I have to fight to stay awake. Sometimes, I feel a presence and look out from beneath the electric blanket and it's my husband checking to see if I am still alive and kicking. Ha-ha.  Smile and nod back to sleep. Guess it the time to get sleep nourishment for healing.

My appetite increased over the weekend but after the second day of radiation, it once again declined and only certain foods calmed the queasiness. For Christmas, my husband received a Yonanas that makes fruit the texture of soft-serve ice cream. I have found the taste so inviting! Knowing that I am eating healthy during treatment is a bonus when snacking. I urge everyone to try the machine! It's delicious!

I have met so many wonderful people during treatment time. We sit down and wait for our appointment call while doing our best to finish a large puzzle in the waiting area. Everyone knows exactly how many sessions the other has to finish and it's always a countdown. If it's the last few days, it's hands-up time. During this time, I have met a wonderful woman fighting breast cancer with so much spirit; it has made my sickness seem so small in comparison. Friday was her last day and I will miss her not being there but at the same time, so ecstatic that her prognosis is excellent for recovering. There is one thing about surviving cancer, it creates a bond with others fighting and succeeding to beat the disease. You walk away knowing, 'hope.'

Good news! The radiation treatment has decreased the size of the tumor- it is now less than half the size. I have seen a little thinning of my bangs. Keeping fingers crossed that it stays intact. Dr. Blanco has repeatedly stated that my hair may thin with minimum hair loss. 

I'm still not a fan of the mask. Was hoping through time, the feel of the hard plastic material and familiarity of the snapping sounds to the table would create a security blanket bond but 'nope.' With the assistance of my daughter, and when the treatment is all over, I'm going to have fun decorating the mask. Lately, I have wondered if the finished design of the mask will be scary or sweet. 'Hmmm, we will see.' Will definitely post the final design – stay tuned.

God Heals

Remember when you heard the words -
and your mind went blank - you were in another world
God heals
Remember in your darkest hours -
when all that surrounds you is pain and sorrow
God heals
Remember friends' prayers - your family's encouragement
- glimmers of hope from everyday angels
God heals
Quiet...you can hear Him now -
always there - yet never this close
God heals
It's just another day -

Making the Radiation Mask

The team of physicists decided to redesign my radiation mask after reviewing the new MRI. Being concerned with my fair skin, the decision was made to also mask my chest. So today it was a restart...late...until all of the physicists' time were clear to proceed. The following photos were taken by one of the mask makers. The mask making time: approximately 1 hour & 45 minutes. With calming meds, it wasn't as frightening to me. The MRI for 2 hours with my face clamped into a helmet and a solid board on my chest...beat the mask making process by a point or two.:)

 Let's Get Started!

Physicist and Dr.Blanco marking points for radiation.

The white 't' are clamps that will secure me to the board.

Radiation calculations being marked on orange spongy pad.

The Mask

A hot, moist mesh covered my face & chest.
Eyes and mouth MUST remain closed at all time.

The fabric slowly begins to dry and then shrink.
You are placed in the machine for the air to dry it faster.

The white dots are helping to form the mask.

The mask continues to shrink, forming tightly to my face.

The fabric turns rigid and hard. Making it difficult to breathe.



AND THEN!!!! 

The Final Mask!!

Mask Maker 1

Mask Maker 2


Special MRI for Radiation  Points

Now the easy part begins! Radiation five days/week for 3-4 weeks,wearing my radiation mask for only 15-30 minutes. 
No sweat! Soon, it'll be my security mask..not! LOL

The Mask

We wear the mask that grins and lies,
It hides our cheeks and shades our eyes,--
This debt we pay to human guile;
With torn and bleeding hearts we smile,
And mouth with myriad subtleties.

Why should the world be overwise,
In counting all our tears and sighs?
Nay, let them only see us, while
We wear the mask.

We smile, but, O great Christ, our cries
To thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet, and long the mile;
But let the world dream otherwise,
We wear the mask!

Methodist Hospital Radiation Oncology Team

Methodist Hospital Radiation Oncology Team are trained in the art of 

patient service. They are all a part of my life during radiation treatments 

and my sincere heartfelt thanks to ALL of them for being 'My Angels.'

Dunn Tower, Methodist Hospital (Lobby)

Serene place to gather. Pianist & cafe. Love it!

Down in the basement at Dunn Tower for radiology

treatments with the Methodist Team. God bless them!

Sweet & beautiful Christie. Greets patients with a smile!

Jackie. 'Our Look Good - Feel Good' Stylist. 
Helpful with all insecurities. Great personality!

Abby. Her goal is to schedule treatment to run 
like clockwork. Goes the extra mile with a smile.

Nurse Practitioner, Mechelle Williams, Radon Physicist,
Always takes the time to explain the treatments and 
answers ALL questions. Intelligent, patient and kind.

Dr. Angel Blanco, Oncologist Radiologist. He is my angel! When  
I asked about not wearing makeup during treatment, he remarked, 
"You don't need makeup, you're pretty enough." He won my heart! 
Very empathic and.soft spoken. He's the best radiologist in Houston 
with the experience to treat OML. I'm very fortunate that he's my doc.


Methodist Physicists

re.

Isaac I. Rosen, Ph.D.

 Paige L. Nitsch, M.S.

S. Davidson, Ph.D

More photos of the team will be uploaded....

Takes Time to Get a Proper Diagnosis

For years, I had searched for the problem with my left eye. The white of my eye would turn red, then yellow. Applying eye drops sometimes, it would begin to look normal then after a month or more, the process would begin over again. My primary physician was inept. The only suggestion he had for my problem with an injection of steroids. One afternoon, he wasn't available and I went to another doctor who was taking his calls. She was astounded at the doses of steroids, showed me photos of individuals who was on the regimen and the serious problems steroids had caused to their teeth and bones. It was then that I decided to search for a solution. Time to change primary doctors. It was a long road to finding the diagnosis.

Finally, after going to eight specialists one of them said, "You need an Ophthalmologist." This is the beginning of the next stage of my journey. Steroid drops for the eyes proved non-effective. After three weeks of treatment, Dr. Soparkar was in the office and Dr. Jenkins requested an examination. I was thrilled. Dr. Soparkar had treated me for Hashimoto's thyroiditis. (Dr. Soparkar is known in the medical field for his discoveries and knowledge.) Dr. Soparkar noticed a nodule on the right-side/back of the eyeball and advised Dr. Jenkins to send me to the Alkek Eye Center at the Baylor College of Medicine. Dr. Alice Mataba was concerned with the nodule so she ordered a scan and photos. During the eye operation, Dr. Mataba found the tumor, located in the eye socket. The diagnosis of the biopsy was Orbital MALT Lymphoma.

Hearing the word, "cancer" is a blow! Dr. Soparkar made a gentle delivery of the 'c' word. Bless his heart! Recommending Oncologist, Dr. Pretti, Methodist Hospital, was the best decision in my next stage of my journey. Now my real journey had begun. Hope this blog gives you the information that you will need if you are beginning your journey with Orbital MALT Lymphoma. On a positive note, Orbital MALT Lymphoma is rare, less than 10% of all the Lymphoma diagnosis and a 95% cure rate. Dr. Pretti said, "If you're going to be diagnosed with a type of Lymphoma...it's the best Lymphoma to be diagnosed with!"

This blog will continue on to the radiation therapy. Depending on what stage (Stage 1-4) the physicians differ on treatment before beginning radiation - chemotherapy or antibiotics. Blood tests, scans, MRI's and the making of the mask are on the agenda before radiation begins. Patience is the key to successful treatment.