Hi Kl,

Been MIA for awhile but now I am trying to get back into daily life.  Would LOVE to help with these if you still need people.  I am from Puerto Rico and I am fluent in Spanish.  I am currently finishing some Spanish translation for the library program flyer in Madison,WI (where I currently live).

Hope all is well!

 I am done with my treatments!!!!!!!!!!!!!

Boy that feels good to say. Currently, I am still feeling the side effects of radiation, which we are told last 10 – 14 days after the last treatment. Radiation sucked less than chemo, but the final verdict is not quite out yet.......

A long time ago, in a hospital not too far away, I entered the radiology oncology department. Greeted by a number of aliens (doctors and nurses, go with the new theme), our favorite, Dr. Bradley, attempted to explain in her own language what the ins, outs, and insides of the procedures would be. Luckily, we had done much research and my own husband has been studying their language carefully. After many questions, we scheduled the planning CT Scan to pinpoint the area to be treated.

CT SCAN - I entered the freezing chamber (I was told they need to keep the room cold so the machine doesn’t overheat). I also had done research and asked them, ”When was this machine last calibrated?” I took them by surprise. Before they did anything, the commanding nuclear physicist appeared in front of me reassuring me that the storm troopers do not touch the machine and that the Commanders (nuclear physicists) calibrate every machine in the morning. Good, I thought.

They took pictures of their subject, me, and then proceeded to ask me to remove the upper garments…it is freezing. They were very kind and offered a blanket. Phew!

I was laid down on what seemed to be a blue beach raft. It was soft because, instead of air, it was full of little tiny Styrofoam beads. They placed a long hose on top of my abdomen and covered me with a plastic cover. In a matter of seconds, they immobilized me by sucking the air out of the bag. I could barely breathe. I found out the hose was a vacuum that sucked the air so the aliens could make a mold of my body…you think they may clone me?

After I was completely sucked in (now I know how a sausage feels), they placed me inside the machine and did the scan. Later, they placed a machine, a small box on top of my chest, to measure my breaths and their rhythm. This way they could track the movement of my invasive tumor.

Just when I thought I was done, two lovely aliens, one wearing a shorter coat than the other, wanted to tattoo me to map the position of the rays: two on the sides for leveling and two in the sternum area. Let me tell you, they are not tattoo artists, because if they were, they wouldn’t have any clients…they hurt!

I was thinking, as I layed on the million-dollar machine that could overheat, couldn’t they afford a tattooing gun? Well, they dropped a bit of black ink on my chest, inserted a needle, and wiggled it around until they were sure the ink had penetrated deep enough.
I felt as if I had been abducted and experimented on by aliens, and I have the tattoos to prove it! Maybe I could sell my story to the National Enquirer and make a few bucks.

After Dr. Bradley planned my radiation, it was decided I would receive linear therapy, which means I would receive the rays from the top and bottom, in a different machine than the one I had originally been planning. Regardless, 17 treatments - no more, no less.

The treatments were every day, no weekends.

The treatments went like this…I walked into a room where my body mold laid on a bed. I disrobed from the waist up, laid down, all this time with a towel covering my private areas (I am shy, so I was glad). I was wrapped in a plastic cover with a hose placed on my abdomen and between my legs. They sucked the air out of the plastic cover while my hands were holding on to plastic bars above my head, so I couldn’t move. Breathing is apparently not a priority. The radiation machine rotates to the bottom, and everyone leaves the room. The rays go on for an average of 20 seconds, and then the machine rotates to the top. The radiologists come back and remove a plate from the machine, my arms are tired, then 20 more seconds of radiation from the top. The suction is released, Ahhh! I can go home now.

At first, I felt nauseous after the treatments. This got better with time. I also was tired, but no excuse was good enough for any of my drivers. They made me take 2 flights of stairs, as well as the long walks to the radiation department. Recently, as we were warned and thus expected, I have developed itchy blotchy skin in the radiated area and have had difficulty and painful swallowing. Sleep is hard to come by, but the Benadryl helps.

Some things I have learned…

Doctor coats: Depending on how long they have been practicing correlates to how long their coats are. Students wear short white coats, residents a bit longer and full doctors coats come to their knees. I want a doctor with a train!

My dad is finally letting his hair grow out. So am I! I have had a bad hair day for the last 7 months. Thanks Dad!

My family has been amazing, and even though we are far apart geographically, we have celebrated the milestones together. I know I will be the most popular at our summer get-togethers since I probably can zap mosquitoes as they get close to me.

Friends…wow! (Brillkids friends included) Everyone has been and continues to be so supportive.

I am so lucky to live in a place were the health care facilities are fantastic and up to date in the latest treatments. My doctors have been wonderful, compassionate and caring.

No one deserves cancer. It sucks! I firmly believe that having a support system is a major contributor to the survivor rate…I am sure of it! Thanks to all of my support system.

Prayer gives you hope! I rely on God to help me look forward. I know He is at my side and Craig (my husband) at my other.

My prayers go out to all of you.

Maria Elena 

"We're off to get the chemo, the wonderful chemo for me.  Because, because,
because, because, of the wonderful things it does."  Please, do not get me
wrong, chemo still stinks, but I had the song stuck in my head for a while and
decided to run with it.
 
We decided to treat chemo #6 as if it was our last chemo.  With that in mind, we
were going to throw a "party" in the chemo room.  With the help of my friend
from Puerto Rico, Michelle R., we spend Tuesday shopping for food, cutting
fruit, making brownies, cutting cheese, and making dinner. 

This time, my appointments were a bit later and I was concerned we wouldn't get
a room big enough to hold my friends who wanted to be there for the last chemo. 
But thanks to Sue and the fantastic nurses of the chemo
area, we had a  "suite" with a bed and a window.  After settling in and receiving
my 13 pills which include a put-to-sleep-a-horse dose of benadryl, I felt
asleep.
 
When I woke up from a heavy sleep I saw all the wonderful faces of friends and family. 
Even people that I didn't know were coming showed up to surprise me!
 
One problem about chemo is that I am in a daze for quiet a while.  Probably
because of the amount of benadryl.  (They give it to me because I am allergic to
chemo...wonder why...I am allergic to poison!) So very often I need a recap to
jolt my memory.
 
Well, everyone was wonderful!  I received flowers from my parents, and
I received a diploma from the Hematology Department for graduating
from Chemo University.  Perfect attendance during 6 semesters.  I completed all
the requirements and gave them a run for their money on some of those cycles. 
But I graduated!!!!!  Yeah!
 
Now (going back to the Wizard of Oz) I stand in the middle of my yellow big
road.  Looking back at the last 6 months...can you believe it, we have been at
it for 6 months, I feel like the lion, the tinman, the scarecrow and Dorothy in
my journey.
 
Like the lion, everyday I search for courage to get me going.  So many times I
wanted to quit but with the support of Craig, my family, my friends and even
strangers I hold on to the courage they helped me discover that I have. 
 
The Tin Man looked for a brain.  Well so am I.  "Chemo Brain" is very real.  If
you spend 10 days with me like Michelle did you would recognize it.  She laughed
a lot.  I imagine that while your brain marinades in poison it doesn't work
well.  I am glad we only use about 10% of our brain capacity.  Maybe I can tap
into that 90%...soon. 
 
The scarecrow was always my favorite character.  He had a big heart and so did I
...really.  My pericardium had started absorbing fluid which enlarged the heart. 
It was protecting it from the tumor.   As of the last x-ray it looked like my
heart has returned to normal size.  In this journey I have found the hearts of
so many.  There are people who have opened their hearts to my family that I
would have never expected.  The cards, flowers, meals, phone calls, emails, walks, time,
hugs, laughs, tears.  HEARTS EVERYWHERE have opened to me and my family.  I am
so lucky!
 
Dorothy...Do you know I played Dorothy in a pep rally skit when I was in High
School?  And we won that year!  (Maybe I will post that picture)  Like Dorothy I
want to "go home" after I am done.  As much as I want to visit Puerto Rico, what
I mean is, I want to be able to click my heels and go back to feeling the way I
used to, go back to being Maria Elena, La Chispa de la Vida.  I know it is going
to take time, energy, and discipline to continue on the road to recovery.  With
courage, my brain and heart...I will get there.  Michelle helped me with that. 
We did snow angels in the snow...we will have to make them in the sand when I
visit her and we even jumped on a snowy trampoline.  Thanks Michelle!
 
These days I am often feeling more like screaming..."I am melting!  I am
melting!"
Some of you may not know that since chemo doesn't stink enough
 they have to add menopause to it.  Yes!  50% of women get thrown
into menopause.  I am one of the lucky ones!  I am constantly sweating.  The
other day Andew kissed my head and said..."Mom, your head is ...wet!"  Talking
about Andrew, I have discovered why he doesn't like the wigs.  He told me..."Mom
you are a boy!  You have no hair.  Take that (the wig) off!"
 
 
Now I am looking forward to this weekend.  My parents, grandma and
and family are coming to celebrate my birthday!   All I want is 41 more!

Now, we wait for March 10th when we have a PET scan to figure out what we do next.

Lots of love and prayers to all!
   
 
 
 
 

Thank you so much!  I know my diet is going to be key after the treatment is done.  Now I have to place my faith in God and in the treatments the doctors think are appropriate.  Drs. do not want me to take any supplements or antioxidents because it can interfere with chemo.  I just finished chemo #5 and praying I only have 1 left...it all depends on a scan that they will do after chemo #6.  Then radiation.  I am really interested in finding out how to get the radiation out of my body.  Nutrition will be key.  Broccoli and almonds have become a big part of my diet and avoiding sugars as much as I can. 

I was thinking of buying one of those juicing machines, but will look into the vita-mix machine.  A bit pricey, (although nothing could be too expensive if it will extend my life, right?) but will look on ebay too.

Thanks again and keep me in your prayers! 

Thank you!!

I will check out the vitamix.  I have changed my eating habits...try to minimize sugars, fats, eat more raw veggies and fruit,  Broccoli has become a stipen in our house.

I will be in touch after Wed. chemo!

Hello Everyone!

I hope your year has started well!  I am getting ready for chemo #5 this Wednesday.  I am scared because the side effects are cumulative and the nausea and tiredness has gotten a bit more chellenging.  I never thougt I would say this but I am looking forward to it because that means I may only have 1 or 2 left.  (probably just 1 more but I need to keep the extra one in the back of my mind so I am not crushed with dissapointment.) 

Kids and husband doing well although teaching reading to my son has been postponed since I was the only one doing it.  With that said, I just wanted to thank Brillkids for providing an outlet for me to tell my story.  It has been amazing to find so many of you willing to join me in this unexpected journey.  I pray and thank God for you and this site.  Thank you for your compassion and kindness.  Together you give me strength.  Thank you!

I will keep you posted.  Keep me in your prayers!

  Wishing EVERYONE a Happy New Year!  May 2010 bring you health and happiness!  (the rest is the cherry on top!)

Update:

Chemo #3 really hit me in my head.  It seems to be trying to break  my spirits!  Stayed in bed for 4 days

I think I a doing OK!  Had Chemo #4 yesterday.  I can see the end...just two more chemo treatments!  I can't wait till all this is over.

Here is a picture of my Mom and Dad and me.  Loved having the family throughout the holidays.  Ca you believe it!  He shaved his head for me!

Love him!

Again, thanks and Happy Holidays!  Keep me in your prayers...IT'S WORKING!!!!

Dec. 12 - A Busy Week, including Chemo #3
   
I do not know if I have mentioned this before, but chemo sucks!

This was a busy week for us. On Monday we headed to the hospital for a CT scan. What I didn't know was that the scan was a full body scan. I discovered this when they took us into a "lounge" and placed 3 large  cups containing 32 oz of yuk "lemonade" in front of me. I had 20 minutes to drink each cup. Since I wasn't allowed to drink anything prior for 4 hours, the first cup went down easy and within the alloted time. The second cup was ok, but I was feeling full. The third one, I was ready to give it to Craig to drink. I wanted nothing to do with lemonade for quite some time. Once inside the machine, I needed additional contrast. I hope my kidneys keep up! Of course results are not available for 48 hrs. The waiting is the hardest part.

Tuseday was port day. I was excited to get the port because I kept hearing the wonderful benefits from it. What I forgot to keep in mind was the pain and shock my body would go through. I am in pain again! That stinks because the pain in my side from the surgical biopsy and collapsed lung was finally subsiding. Hopefully, the benefits will out weigh this pain.

Tuesday night a huge storm hits Madison. Snow day for the kids tomorrow!

Wednesday Craig and I ventured through the desolated streets of Madison to get to the hospital. I was glad people listened to the weathermen, as we were one of the few patients that dared to drive in this weather. We certainly couldn't let a few flakes (12-18 inches) get in the way of the next treatment.

When we arrived at the hospital, we were glad to know that my doctor had made it in, as well as a few nurses. As I waited, I asked the lab technician to help me put some Elam cream on the port area (Elam cream is used to numb the area before use for treatment). As the tech started to remove the coverings, I began to have visions of being that guy in the Alien movie, just waiting for something scary to pop out of my skin. Then I saw myself on the cover of the Enquirer with the by-line "Woman Abducted by Aliens. Aliens place an object under her skin. She has been taken to Area 51 for further testing." I was scared of what to expect and ended up having an anxiety attack. My body felt as if I had been dunked in a pool of alcohol. I was burning up, sweating and at the same time freezing. During all this time, the tech and nurse were still trying to take the covering off. It was so painful, all I kept thinking was "What have I done to myself?!" I became nauseous and turned pale white. The nurse immediately placed me in a wheelchair, took me in a chemo room, placed me in bed, took my blood pressure and temperature, and gave me anti-anxiety medication. When I was stabilized, it was determined that the port area was too sore and sensitive, so we would not be using it today. So much for the port.

There were, however, two positive aspects to the day. First, because there were so few patients that made it in, we got our choice of therapy venues, so we went for the penthouse, or at least a room with a window, a bed, and close to both a bathroom and the kitchenette. We had almost undivided attention, which resulted in the quickest treatment yet. More importantly, however, the results of the CT scan showed the tumor was significantly smaller compared to the PET scan results back in October. Our doctor was confident that only 6 treatments would be needed, as opposed to the 6-8 originally expected. If so, we could already be half-way done. That is music to my ears. Keep your fingers crossed. However, as we approach the back half of the chemo treatments, Dr. Chang suggested we start thinking about follow-up radiation to zap whatever residual tumor remains. That scares me!

Today, Friday, I feel like I have been run over by a bigger truck... again. Chemo seems to do that to me.


Keep me in your prayers!

There are so many things I need to be thankful for this year...

I am thankful for...

My family who have been giving me unconditional love during this difficult time

My husband, who truly has shown me the meaning of for better or worse,

My children that have supported me and each other through the ugly side of cancer

My friends that have the courage to walk next to me during this journey

The kindness of strangers,

The Monday, Wednesday and Friday meals; I never thought how helpful they would be,

The walks that take me out for fresh air and remind me to take a deep breath,

My chemo nurses who are compassionate in my delirious stage,

My mom who holds my hand as we pray, cry and laugh,

My dad, for being unselfish and letting my mom be near me all this time,

My round head, beats being bald with a bumpy head

My red wig that makes me feel sassy,

Prayer, that brings me back to Him and place my trust in Him,

Anti nausea medication,

Colace,

That I finally got a diagnosis and the cancer was caught early,

Chemo, yes, I am even thankful for chemo!

And this forum where I share my journey

The moment I have been dreading is here!  I had to shave all my hair.  I was shedding so much that I had no choice.  To my surprise my 9 yr.old son's words ring true...it is just hair.  I was so scared!  Many cancer patients say that they shave their hair because it is something that they can control..I can see why.  I was not so quick to shave it, but it was the convenient thing to do because the hair was falling off. 

I never thought I would say it... I am bald!

I am having a good day!  I am feeling like myself again!  Just in time to get chemo again next week.  Please, keep me in your prayers!  It is working!!!!!
I was so sick they had to check that my organs were all working well. The x-ray shows that the tumor is shrinking!!!

Thanks for the oportunity to share my journey!

Hello,
 
First of all, I want to say thank you to everyone for the ,prayers
and replies.  Also, I want to appologize in advance if I offend anyone at the use of the word s@cks!
OK chemo S@CKS!  It does.  Last Wednesday I had my first
treatment.  That was the easy part.  what has transcended has been terrible.  To
my luck I have had every side effect that I possibly can have.  And I felt
terrible, physically and emotionally...until today.  I needed to get out of the
rut.  I finally got out of bed today.
 
The side effects were awful!  Nausea, constipation, body aches everywhere!  The
worst were the mouth sores.  For 2 days I could barely eat or speak!   That is an amazing task, since I have an
opinion about everything.  Well, chemo S@CKS!
 
I am a walking pharmacy!  I hate that they keep giving me more medicine to help
me through each side effect.  The one good thing is that they have mentioned is that
they will have to adjust all the chemo meds for the next time because of the way
my body has reacted.
 
Did I mentioned, chemo S@CKS! 
 
I am still in a daze.  Is this really happening?
 
Staying positive.  Ha! That s easier said than done.  My chispa inside is really
trying.  And today is a good day.  Craig, my husband and I went for a walk and it felt good. 
The cold feels good in my face. I used to like warmth, now cold feels better. 
Could it be that I am becoming more of a Wisconsinite. Nah!  PuertoRrican at
heart.
 
Did I mention, CHEMO S@KS! 
 

Hello,
I have been MIA for a bit, but today I feel well enough to sit and tell you about my last couple of days.

Biopsy #4...Well, we arrived at 7:30 for pre-op. After being poked and probed to get ready for surgery, it was the anesthesia's turn. The resident looked at me and said.."I know my limitations, I am calling my attending." Well, it seems I have very small veins and they had a heck of a time finding a good one to place the IV. They use a pediatric needle and where able to get it in successfully. Then came the worse shot... Heparin. That goes straight into my stomach! It hurts and burns and they wouldn't let me rub the spot because it would bruise. Guess what, it bruised anyway!

I had VIP treatment during surgery... so I was told. VIP because they were able to collapse my lung without a chest tube. They place a thick tube down my throat that split into each lung. They then synchronize the lungs to inhale and exhale at different times and then collapsed the right lung. Then turned me on to my side and place a scope and 2 other instruments to get the 15 samples. They took a picture of my tumor! They are going to send me a copy of it. I think I am going to make copies of it and use it as a dart board that I can shoot at after each chemo treatment.

I stayed overnight and did not sleep at all. The nurses were very nice. They all came at different times to give me medicines or to take my vitals. Why couldn't they time it so they would only wake me up once? Well, it took its toll when Craig the nurse (not my husband Craig) came @ 10:00pm to administer another Heparin shot. I started screaming at Craig, half joking and half serious..."Craig get away from me!" (a phrase that I have practiced more than once before.) I didn't understand why I needed to have the shot in my stomach when I had 2, yes 2 IV's. Yes, I am a wimp! There just have been so many pokes. Little did I know I was getting another one at 6am. I was released by noon. My instructions...do not shower for 48 hours. Something that Jacob my son appreciates. He wouldn't consider shaving his head when I do, but not showering for 2 day, solidarity with mom! "She doesn't shower, I do not shower either." My brother came with his family and my dad was also here. I was glad because they were able to entertain the kids.  I rested.

Monday was by far the worst day. The gloomy day did not help. I do not know if the magnitude of my battle that I hadn't even begun to fight, the constant pain, the overwhelming fear, the bottled sadness that we all carry around the house to be strong for each other...it all just got to me. It was hard to get out of bed.

Tuesday was an attempt for a cancer free day. I do not know if that will ever happen again. We went shopping getting ready for chemo day...saltine crackers, hard candy, pretzels, apples, comfy clothes...

CHEMO DAY

First, I went to see my oncologist, I officially have Diffuse Large B-cell Non-Hodgkin Lymphoma. Stage 1-2a

Chemo was OK. I started by taking about 10-13 pills. Then they placed an IV. The nurses are better at finding the veins, but it still hurts. My first drug Rituxin needed to infuse for 3 hours. It gave me an allergic reaction...my ears were itching and my throat felt like I had needles in it. They quickly stopped the infusion and gave me enough Benadryl to put me to sleep for about 3 hours.

Another side effect, my legs felt as if they were 85 lbs. each and my tongue and taste buds are changing.

Feeling Ok today.  I keep praying and saying "Kill the cancer!  and Jesus I trust you!"  Thanks so much for your posts and prayers!

Maria Elena

Krista,

Thank you for the post.  I needed this.  I will buy the book to especially look at the part of how to deal better with chemo.  I also like the other links because I am 40 and every time I go to the oncologist everyone around me is much older and it is hard to relate.  Drs. sometimes seem to be desensitize.  Thanks Krista!

Well, my mother thinks I am being too dramatic about the impending biopsy, the doctors reassure me they do this 2 to 3 times a day...well they do not do it to me so....I am FREAKED OUT!

OK, so on Friday I will be put under general anesthesia and the doctors will insert a tube through my right side between my ribs and through my lung and proceed to collapse my lung...yes, they will collapse my right lung (luckily, I have 2 lungs). Then, they will make another incision in between my other ribs to insert the camera (laparoscope) and an additional 2 incisions for the instruments to be inserted to try to reach the tumor in my chest and cut out a big enough piece of tumor to get tested. I will be in the hospital for at least 24 hours. And that lung tube will remain for a while until they are sure my lung is re inflated and I am breathing normally.

Can't wait for Friday! (Can you hear the sarcasm...I have not mastered sarcasm as it was something new to me when I move to the States. I still like to try it sometimes :-) )

Keep me in your prayers!