"Hi, I Have A Brain Tumor" - In Action

This happened a while back but it's too good not to share, and ironically it ties in perfectly to the blog I wrote previously titled, "Hello, I Have A Brain Tumor."
While I was still having my radiation treatment, Ili and I went to have lunch together after my treatment.  As usual I start to feel nauseous after we eat.  By the time we reach my building I'm not feeling so great.  Instead of pulling over on the side that corresponded to her, Ili pulled up to my building and was facing oncoming traffic.  Really this is no big deal since I live on a street that receives very little traffic.  But it just happens to be that a car - a 7 series BMW to be precise, comes heading down the road and the gentleman inside (mid 30s pretty handsome looking) became visibly upset that we were on the wrong side of the street.  He stopped his car so that he could say something (which we could not hear of course) and make hand gestures (not obscene - just venting his upset) at us.  I tell Ili that I'm going to go speak with him.  So I get out of the car and head over to his window.  He looked very annoyed and frustrated.  Meanwhile the street is empty; he could have easily gone around Ili's car and headed on his merry way.  Clearly the poor guy was just having 'one of those days.'  As I am standing at his window he moves the car a tiny bit.  I thought that he was going to drive away and leave me standing there.  But then he looked at me (I was very calm and smiling) and then he decided to pull down his window.  As he is telling me that some people thing they own the road I say to him that I'm only here to try to make him feel a little better about the situation.  I then say to him,

"The reason that she is pulled over onto the wrong side of the road is because I don't feel well and I live in this building here. I don't feel well because I have a huge tumor in my head and neck and I just came from my radiation treatment.  Also, I'm not supposed to be in the sun, so her being on this side makes the walk in the sun a little shorter for me.  I know that you didn't know any of this.  But we never really know what's going on with other people.  I wrote a blog about this actually.  I know some people think they own the road, but that's not what's happening here, and that lady isn't one of those people.  I really hope you feel better about all of this now."

The guy only skipped one beat.  Instantly his face and his whole demeanor changed.  He grabbed my hand and held it and then kissed it.  He then looked at me and said, "I'm so sorry.  I can see I was completely wrong.  I know that you are going to be ok and I will be praying for you."  He smiled and then drove away waving at Ili.
This whole experience has really opened my eyes to how little we know about what is going on with other people and how important compassion, patience, and understanding are.  We don't wear signs on our foreheads stating our current circumstances.  In actuality it is very few people who 'think they own the road.'  We're only human, trying to get by and be happy and trying to make sure those we care about get by and are happy as well.  I know it's easier said than done to be patient and compassionate with others - because we have things to do and places to be as well.  I'm somewhat of a perfectionist.  I like things done exactly the way that they should be done; I can't stand being late; I've lost my temper over ridiculous things just because something wasn't up to my standards.  But this tumor is teaching me many lessons.  Undoubtedly one of the biggest lessons is to consider that I have no clue about what others are facing and that my 'standards' may be completely insignificant in comparison. 
Thank you tumor for the lesson in humility.

My First (And Hopefully Last) Overdose

It's been quite a week.  Pain management has been an interesting and at times frightening process.  On Tuesday night I changed my patch and put on two fentanyl patches (opioid patches used for pain control) instead of the one.  My doctor had told me if the pain did not go away with one I could try two.  I slept just fine through the night but the next day I couldn't wake up at all.  I was beyond fatigued; even opening my eyes seemed like a difficult task.  Around 2:30 in the afternoon I finally wake up because I need to go to the bathroom.  I felt funny but figured it would be ok once I went and did my thing and got back in bed.  Well, the trek to the bathroom (less than a hop, skip, and a jump) proved challenging.  Once there, the room started spinning, my hands were numb, I was sweating and quite frankly I started to panic.  I knew what was coming; any second I was going to start throwing up.  I know for some people throwing up is no big deal.  For me, it's a very scarry and unnatural ordeal.  I start crying and shaking and I literally turn into a five year old that can't even think for herself.  After a way too disgusting nightmare to describe, I managed to find my phone and call Nate.  He hears a frantic crying voice saying, "Please come home now.  Can you come home?"  While he's trying to figure out what's going on, I've already hung up and am dialing my mom.  She tells me she can leave right away but she called Nate first since he was so much closer than she was.  She called me back to tell me he was already on his way.  I stayed on the phone with my mom until Nate arrived.  I managed to calm myself down a bit and explained to Nate what had happened.  Unfortunately some of it needed no explanation since the evidence of what had transpired was still in our bathroom.  As he's cleaning up I'm worried because I can't get the room to stop spinning or my hands to stop tingling.  Nate brings me a little pack of Jello and before I could get through half of it, it was coming out.  Luckily I made it back to the bathroom to make more of a mess for poor Nate.  As he's holding my hair back and rubbing my back, I'm thinking, "This guy must really love me."  After this second go around it dawns on me that the doctor had warned me this could happen and I removed one of the patches.  Meanwhile Nate was calling the doctor to find out what we should do.  It takes a while to get him on the phone so I end up removing both patches.  By that point I would have removed my skin if you told me that would make me feel better.  The doctor instructed us to put one patch back on and that two patches was obviously too much for me but that I would start feeling better within 24 hours.  I waited about 4 hours before I put a patch back on because I would have taken large amounts of pain over what I had felt during the overdose.
Without exaggeration, this was one of the most frightening things that I think I've ever been through during all of this.  Luckily I've been able to manage the pain better this second half of the week but I still have pain - even with the patch and the Percocet.  I am beginning to think that being pain free may not be realistic during this time.  My doctor however, doesn't seem convinced.  He believes that I should see a neurologist and find out what is going on and that perhaps they could find a way to make me much more comfortable.  I plan to make an appointment with a neurologist as soon as possible.  In the meantime I’m hanging  just trying to hang in there and I’m hoping that this phase will end very soon. 
Please keep the prayers coming.  I know God is listening and I have an abundance of faith that this will time will soon pass.

Pain, Drugs, and Frustration

Last week I called my doctor to tell him that my pain had increased quite a bit.  I thought that increased pain was to be expected since my tumor continues to swell after the radiation.  I wasn't worried until my doctor informed me that increased pain was not supposed to be part of the package.  Luckily I've gotten used to hearing that my tumor doesn't behave in "expected ways."  Apparently I have a rebel tumor.
After increasing my pain meds to the maximum dose possible and spending two nights in more pain than I have experience so far, I was right back at my doctor's office.  He prescribed an opiod patch that delivers a constant dose of pain medication transdermally.  In addition I was told to continue to take my oral pain meds as needed.
I was eager to try my new patch - my pain savior.  I did sleep much better that night with my patch on but the following day I was completely drugged.  I could hardly keep my eyes open and I ended up sleeping through most of the day.  That didn't bother me too much given that it's happened several times due to the fatigue that the radiation causes.  What did bother me, what frustrated me beyond belief was that I still had pain.  I have pain in my head, face, my jaw, my neck, my teeth, etc.  How could I feel so drugged (a feeling like if you're on slow motion and not in full control of yourself) and still have pain?  The only thing left for me to try is two patches - which the doctor warned me I might have to do.  I worry that I might not wake up for two days but it's worth a shot if I can be pain free for a while.
Overall I'm just very frustrated these days.  Poor Nate is almost just as frustrated as I am.  Men are "fixers."  He sees me holding my face or my head and he just wants to make it go away.  Tomorrow, my patch change day, I'll try seeing if two patches leaves me pain free or at least with a lot less pain. 
There is one pain remedy that seems to make things somewhat better.  Saturday Ili picked me up in the afternoon and we went to the mall and later that night I spent time with friends celebrating one of my closest friend's birthdays.  When I'm distracted I still feel the pain but I'm not as focused on it.  I guess you could say that I can tune it out a bit more easily. 
Thank you Ili and friends for making my pain a little better on Saturday!
This is all I’ve got for today.  I know it’s a bit of a different blog that I usually write.  I feel like I’m just venting and not being my usual positive self.  She’ll come back – I promise.  I’m still me, but I’m hurting and frustrated and more than anything I wanted to update the blog.  I’m sorry it’s taken me a week to update.  I’ve received some concerned emails and phone calls and just wanted to let everyone know that I’m ok.  I’m hanging in here and just doing my best to roll with the punches.

A BIG Wedding Announcement

Nate and I have decided to change our wedding date from August 14, 2011 to December 11, 2011.  The reason for the change is that I have been placed on a blood thinner due to the blood clot I have.  Although many people are on blood thinners and they are just fine, the medication does warrant being extra careful.  'Careful' is not exactly what this bride wants to be for her wedding weekend.  I would like to enjoy the sunshine (something I should not do at all at the moment), ride wave runners in the Bahamas (not a problem unless I happen to fall the wrong way), have a champagne toast (not an option to have any alcohol while on blood thinners), etc..  By December the hope is that I will be off the blood thinning medication and that I'll be on my way to (or even better - already attained) full recovery. 

The irony of all of this is that Nate and I wanted to get married in the winter originally.  We thought that we would be getting married this winter but we learned that my sister was expecting her baby girl December 1st.  So we moved the date to April of this year but then we learned that babies less than 6 months of age are not allowed to go on cruise ships.  Since our wedding is a weekend cruise wedding, we moved the date once again to August.  My sister of course offered to fly in to the Bahamas for the wedding but this is a weekend affair.  Having a wedding without one of my sisters (both of which are the maids of honor) is just not an option for me. 

I had always said that the only time of year I did not want to get married was summer; the heat, humidity, and bad hair days just don't make for a beautiful bride.  But Nate and I wanted to get the show on the road, not only because we love each other and want to proclaim that love in front of all our friends and family, but because we are ready to start a family.  When we found out about the tumor and that the treatment course was radiation, we also learned that we would have to wait at least a year after radiation before we could start trying to have a baby.  So with that being said and with the additional complication of the blood clot we figure we've been waiting this long to have our weekend wedding, why not postpone it a bit and assure ourselves a wonderful weekend with our friends and family.

OK so having said all of this, we would also like to invite everyone who would like to attend our weekend cruise wedding to join us.  We are sailing aboard Royal Caribbean’s MS Majesty of the Seas.  For more information, including prices and how to book please visit our website: http://www.theknot.com/ourwedding/NathanNeal&MariaArtime
We have not sent out any invitations.  We will make some new save the date cards but what we really want is for everyone to know that you're invited!  Even if you don't know us personally but you've been following the blog and have been a part of this journey with us, it would be our honor if you celebrated this very special weekend with us.  Just let me, Nate, or my parents know that you are interested in attending and how many people you will be traveling with (kids are more than welcome) so we can include you in all the festivities for the weekend. 

I know that to date there are about 80 people who have already reserved their cruise.  Your reservation has already been moved to December.  If for some reason you can't make it because of the new date, please call the travel agency and let them know.  Some super good news is that you can expect to save about $100.00 per person.  Please see the website for the new prices and the payment deadlines (which have of course changed as well).

Nate and I are very excited about the new wedding date - and that it's no longer in the middle of hurricane season!  The wedding itself will be in a church in Nassau and the reception will be back on the ship.  We are so looking forward to this weekend and to sharing it with our friends and family!  We have felt so loved and blessed by the entire community during this time that it would be our honor if you joined us to celebrate the start of our journey as husband and wife.  We truly hope you’ll be able to sail away with us for the weekend! 

Radiation Graduation

Today, for the first time in weeks I do not have a scheduled radiation treatment.  Yesterday I completed all of my sessions.  There were so many hugs and congratulations that it felt like a graduation!  And like all graduations it was bitter sweet.  I'm beyond thrilled to be finished but at the same time I met some wonderful people in this process; people who will stay in my thoughts, heart, and in my prayers forever. 
For starters there is a very special woman on my radiation team.  We share a love for shoes and handbags and she always wanted to see what heels I would be wearing to my radiation.  Yes, I know you're thinking, "She wore heels to radiation?"  Oh yes I did!  Sure there were the occasional sneaker days.  But most days, I still strapped on my heels and marched them right into the radiation room.  After all, just because you don't feel so well on the inside doesn't mean you can't look fabulous on the outside.  But back to this amazing woman.  She always made me smile.  Her love and compassion were a source of peace and comfort for me during this entire experience.  After my session yesterday she revealed to me that she has breast cancer.  She has already been through chemo and her scans show that she is doing very well.  I have no doubt that she'll make it through this.  But she shared with me that she is very private and she does not tell many of her patients what she is going through.  I can't even imagine the strength that it takes to care for others when you are going through something so similar if not exactly the same.  She is a true inspiration to me and all who are fortunate enough to know her.  If you are reading this my friend, I honor you, your strength, courage, and graciousness.  Thank you for confiding in me the challenges that you are facing in your journey.  Thank you  for the gift that you are to me and to all your patients!
Another woman near and dear to mine and my family's heart is the wife of a patient.  She accompanies him every day to his radiation treatment and I and my mom, step-mom, and dad got to know her very well.  I've nicknamed her Mrs. Pearls of Wisdom.   She and her husband have been together over 50 years.  She has 18 grandchildren and great grandchildren.  Listening to her life's journey was not only fascinating; it reminded me of what's important in life - family, love, faith.  We grew so close to her that my parents considered going down to radiation while I was in the hospital to let her know what was going on.  We didn't and sure enough when we saw her again she had been so worried that we wish we would have told her.  She said to me yesterday, "I don't ever want us to meet like this again. We'll meet somewhere else.  Somewhere happier where I can hear all about your wonderful wedding - and the dress!"  She's something else.  She too put a daily smile on my face and our chats will be incredibly missed.  Her husband is almost done with his treatments as well.  She is looking forward to a long and relaxing celebratory vacation with the love of her life.  Thank you Mrs. Pearls of Wisdom for all your life lessons and your kind spirit!  You will be incredibly missed!
Like these two amazing women, there are so many people that I have met in this radiation journey.  I feel a kinship with them.  They understand some of what I'm going through and I some of what they're going through.  I say some because radiation is different for everyone - not just where they have the radiation but also the side-effects they experience from it.  But none the less, they have to be there for something that is out of their control.  Something they did not ask for yet they choose to fight through.
After all the hugs were given and the goodbyes were said, I left Sylvester thinking about how incredible my experience had been there.  The staff, the nurses, the doctors, and the patients all come together with such synergy.  As a patient, you feel that you have so many cheerleaders cheering for you success and for your health every single step of the way. 
The doctor says that I can expect to get a little worse before I start to feel better.  I'll take the 'little worse' as long as better is part of the equation.  I know that I still have a journey ahead of me but I'm incredibly optimistic about what this journey will bring.
To all my radiation buddies, I wish you all the best.  You are fighters and I know one day this will all be a memory for us.  The chats we had, the smiles we shared, and the encouragement you gave me will never be forgotten.  You will remain in my thoughts and prayers for a lifetime.  Stay strong and courageous and may your beauty always shine for the world as it did for me!

Hope On The Horizon

Thursday afternoon I was released from the hospital and I was able to resume my radiation treatment that very same day.  The next few days were spent in a hibernation type state.  I was extremely fatigued which the doctor explained to me was the result of coming off the steroid I had been on along with resuming my treatments.  Sunday I finally emerged from my mostly sleeping state and spent a wonderful day with my family.
But I have so much more to tell about what transpired while I was in the hospital.  In the Hospital Update blog I mentioned how my doctors were exploring an outside the box treatment for my case.  I am happy to report that as we continue exploring, we are also now in action.  The treatment is a shot administered every three months intramuscularly and it is currently being used by endocrinologist to treat pituitary tumors.  It has also been used to treat glomus tumors (the type of tumor I am believed to have) in several cases.
On Wednesday a team of endocrinologist came to visit me at the hospital.  They were armed with two medical articles that showed success in stopping tumor growth with this treatment in the case of two patients.  It is extremely difficult to find patients with the type of tumor that I have so the endo team was clearly excited about the possibility that I could be success number three.  They were so excited that they had already ordered the treatment to be delivered to the hospital for the following day and if I consented I would be receiving this injection as soon as it arrived at the hospital. 
My family and I were not as eager to consent.  We had many questions and concerns about lack of data.  We wanted to speak with my team of doctors, with endocrinologists that we know and trust, and of course with my radiation oncologist.  After speaking with all appropriate parties we learned many things that helped make our decision a no-brainer.  First, the medication is commonly used and FDA approved.  It is experimental in treating my type of tumor but it is by no means an experimental treatment.  In fact, I had already had the medication injected into me when I did a test to better examine the properties of my tumor.  The side-effects are GI related.  I might have to endure some nausea and stomach aches but I could achieve stoppage of tumor growth or even shrinkage in exchange.  Seems like more than a fair trade-off.  My radiation oncologist said we could do this in conjunction with my radiation treatment and he told us that he had two patients that went to Italy for this medication and it shrank both of their tumors.  Now that was music to our ears!  We asked how would we know what worked - the radiation or the medication.  The response from all the doctors including the endo team was, "Who cares."  We had to give it to them.  We really don't care what works at the end, as long as something does.
Wednesday night my usual night nurse came to check in with me.  About an hour later, another nurse, who happens to be a nun enters my room.  She introduces herself and tells me that she is going to be my nurse for the evening.  I ask her about the other nurse and she just smiles and tells me it's going to be her tonight.  As she leaves the room I consider what it's like to be a nun and a nurse at the same time.  It's not something that you can hide and I'm sure that different patients react to this in different ways.  I felt comforted.  Around 3am my nurse enters the room and tells me the medication has arrived and she's going to be administering it.  To be completely honest I had been looking forward to a shot free, blood drawing free night.  I tensed a bit because I had no prior relationship with my new nurse.  Did she know what a chicken I was?  It was dark and the middle of the night.  Had she seen the bruises all over me from the needles?  As she's asking me to lay on my side I decide to relax and to trust God; after all this is a nun administering a treatment which might shrink my tumor.  This is a nun administering an injection that could save my quality of life.  And then as I'm in the middle of a whole gratitude rant that I was giving God and mentally high-fiving 'the big guy' about the irony of my nun nurse I feel her gently snap me out of it.  I turn in disbelief and say, "Sister, you did it?"  When she responds that it's all done I wanted to spring from my bed and hug her.  I didn't feel a thing!  I was still waiting for her to do it!  I then tell her that she is amazing and that I had not felt a thing.  She seemed pretty surprised herself but she was beaming that I was so happy with her.  After she left my room I did not see her again but she will be fondly remembered as my nurse nun who administered the first of what could be the cure we've all been praying for. 
My friends, the prayers are working.  I am in touch with God’s constant presence and immense love for me during this time.  I will write a full blog entry on this topic but for now I’ll share this.  My relationship with God has been evolving during this time.  As many of you know I have a wonderful father and we have a great relationship.  I see my relationship with God much like I do my relationship with my own father.  It is extremely loving, always present, light-hearted, and fun.  I never thought I would describe my relationship with God as “fun.”  After my treatment injection I fell asleep laughing and conversing with God.  My thoughts were something like this:  “So much for your super mysterious ways huh…I mean the whole blood clot, yeah I didn’t see that one coming, that was pretty genius; I gotta hand it to you – brilliant curve ball!  But a nurse nun!?  And I thought subtlety was one of your strong suits?  Thanks for that.  Another one for the history books…Good one!  Good one!”

Hospital Update

I cannot express how touched I have felt by the outpouring of messages, phone calls, emails, facebooks, and support from so many who have reach out to me during this time.  My family and I thank you for the immense role that you are playing in my healing and in the strength that I draw from your support during this time. Your thoughts and prayers have definitely been working! 

The best news that we've received so far is that the tumor has not extended down my neck.  The tumor appears to have swelled, which is an expected side-effect of the radiation.  The doctors say that the swelling should subside in about a year.

The next best news is that I should be able to resume my radiation very soon - either by Thursday of this week or Monday of next week at the latest.  It is imperative that I complete my radiation treatment since surgery is not thought to be a viable option at this time.  My team of physicians is also exploring other outside the box options in conjunction with the radiation treatment in the hopes that we may be able to achieve some shrinkage of the tumor in the future.  This is excellent news!  This is the silver lining of having gotten this rare clot in my jugular vein.  It has put me back in the forefront of my doctor’s minds and they are once again intrigued by what a rare case mine appears to be.  In addition to this outside of the box exploration they are also looking into a plan B just in case the radiation is not effective.  One of my physicians is speaking to a world expert this week about my case and seeing if I am a candidate for a new experimental treatment.  Of course, the hope is that the radiation will be effective and stop the growth of my tumor.  But like all who know me know, I'm a plan A, B, C, and D type of a girl.  So having my doctors speaking to world experts about my case and exploring all possible options gives me great peace of mind and once again makes me realize how blessed I am.

For the past couple of days the doctors have had me on IV blood thinners in order to manage the blood clot.  It is tricky to get the blood thinners at the appropriate levels in my blood so they had to draw blood every 6 hours in order to manage the amount of thinners they were giving me.  This has been the worst part of my hospital stay by far.  Like I had said earlier, I'm a huge pain chicken.  Needles had started to not bother me as much but the blood thinners cause me to bruise very easily.  On top of that, we can't draw blood from the arm that my IV was receiving the blood thinners and that arm happens to be the one with good veins.  So I was running out of veins because every time they stuck me, I would bruise and it would hurt.  But I can stop being a cry baby already because that's all over now!  I only have to check my blood levels daily now and they have disconnected the IV so I can use the veins on the good arm.  Just this development alone today has me feeling a million times better!  The only downside to disconnecting the IV is that I'm on a new self administered medication shot to replace the IV blood thinner.  They've done this so that I can leave the hospital and return to my radiation treatments as soon as possible.  I'll have to administer these shots once daily to my stomach area until my new blood thinning oral medication reaches the appropriate levels in my blood.  Then I can stop the shots and just take my oral blood thinner and I'll only require a weekly blood test to monitor the levels of blood thinner.  I will be on blood thinners for approximately six months.  They require monitoring of your diet and of course being extremely careful to not cut yourself or hurt yourself because I'll be at increased risk for excessive bleeding.  The blood thinners can also cause blood clots so it's something I just have to keep a close eye on.

The current plan is to have me discharged by tomorrow or Thursday at the latest.  The doctors have all been commenting about how a-typical my case is.  The chances of getting blood clots are rare.  The chance of getting a large blood clot in your jugular vein is extremely rare.  But while it appears that I have a little rain cloud above my head, what seems even more clear is that I always have angels with umbrellas at the ready. I have such a high sense of gratitude for how these days events have transpired.  It was a long weekend and all of my doctors were out of town.  However, they made it known through contact with their teams and personal phone calls that they made to me and my family that they were on top of everything.  They have been in communication with each other about my case all this time.  They have been beyond proactive and on top of this.  I really could not hope for a better group of doctors to get me through this ordeal. 

I am in very high spirits.  I know that this is just a bump in the road that will soon become a memory that will serve to remind me of what I am capable of overcoming.  Thank you again to all of you who are following my story, who are sharing your inspiration with me, and who are keeping me in your thoughts and your prayers.  I am so present to your love and support and the blessing that you are in my life!