Amazing Day

I went from a terrible and irritating day last week to one that was the exact OPPOSITE yesterday.  I was debating whether to share and blog about yesterday since it is work related, but it was so AMAZING that I can't avoid it!

I knew that a patient insight seminar about sarcoma was scheduled for November 8th at work.  There was going to be patient interviews, sarcoma background, Q&A, and Votrient info (submitted June 28th to FDA for sarcoma).  I never knew if I would be able to attend the seminar because of chemo treatments and/or radiation; however, a few weeks ago I contacted both work and Dr. S and said I'm going to this seminar.

I was at work early yesterday chatting with Dr. N who works for oncology at work (he is a former pediatric oncologist) and was the meeting host.  (He has offered numerous areas of help!)  As long as it was OK with me, he offered up the idea of me participating in the Q&A session.  For those of you that know me, opening up to an audience is certainly not a problem!

I was in the auditorium early since I needed to understand where to sit and be set-up with a microphone so I got the chance to meet Dr. D from Boston who would be interviewing his patients.  My doctor knows this man very well and has shared with me that he feels Dr. D is a wonderful expert in sarcoma.  Dr. D already knew my case prior to Tuesday due to wonderful resources at work (of course, I approved those discussions)!

As we were waiting for the seminar to start, one of the patients that would be interviewed started chatting with me.  She started asking me about what I did at work so I gave brief and easy explanations since I did not know her background.  As it turns out, she is a biochemist!  Throughout the day we had opportunities to chat and are now communicating with each other regularly.  From a spiritual perspective she was truly a huge reason why I needed to attend this meeting.  Not only do we share a scientific mindset, but I think we are very similar in many respects.  She is calling us "sarcoma twins," which I think is awesome!  For anyone that would be interested in reading about Corrie here is her blog http://www.jamforfries.blogspot.com/.

While I'm chatting with Corrie, colleagues started coming into the auditorium.  It was great to see so many familiar faces, but there was a point when I started tearing up.  As an aside, an email was sent the day before mentioning that registration for the event was low.  Not only did I send out a mass email to my colleagues, but my manager and others sent out emails mentioning that I would be at the event, but not certain of my involvement in the seminar.  The exact opposite actually occurred in the auditorium - people were sitting on the floor because it was "sold-out"!  This started the tears of joy.  It was important that so many people were there to learn about sarcoma.

The next line of tears happened quickly.  The meeting started with a brief intro from Dr. N about sarcoma and then he mentioned how there was a local connection with me.  A video from our wonderful Chairman of R&D shared how despite the fact that I was diagnosed with sarcoma I was focused and shared with work the problems I was having with breastfeeding and taking drugs during my diagnosis.  He had wonderful things to share about me and mentioned the numerous levels of support I have received from the company.  (I shared those stories with him!)

Dr. D was next inline to discuss the details of sarcoma, which was easily understood even by non-scientists and humorous in many respects.  Biggest learning is "Dr. Google" is NOT a good doctor!  Corrie and Les were interviewed after the sarcoma education.  From my point of view it was great to hear and see people that survived!  Granted it always seems like there are issues whether from diagnoses or treatments, but these people are living and doing well.  A wonderful thing for me to see. 

Q&A.  Luckily no major questions were asked to me specifically for a little while until Dr. N, the host, asked me to share my thoughts about estrogen receptors and sarcoma.  Haha!  loved this!  If you remember from previous blogs, Dr. S did not want to discuss this and treated me like an idiot.  I have had countless oncologists and chemists actually interested in this notion so I shared this openly like I did in the last blog.  Even Dr. D was open to the thought and didn't view it as a completely odd and inappropriate notion.  I just shared with the entire work community why my tumors might not be shrinking with rationalization and appropriate research AND I WASN'T TREATED AS AN IDIOT!

At the end of the Q&A session I had an opportunity to mention anything I wanted...Oh boy.  I started tearing up quite a bit because I needed to share and thank everyone for the support and help that they have offered.  These people have contributed to my positivity climb and my mental and emotional state has been wonderful as a result.  I don't remember all that I said since it was purely spontaneous, but I think I mentioned something about being a patient and still wanting to help patients.  I do remember offering my blog (think I might have mentioned that it might be crazy) and contact info.

I did get to see a lot of colleagues after the meeting and countless hugs were given.  Love you guys!  I did get a chance to have lunch with the Votrient team and spent more time with Corrie.

WOW!!!  What an amazing day for me.  I'm still thinking about the day because it was so meaningful.  It was also wonderful that my hubby, dad, and mother-in-law were there to experience it as well.  Things happened with my case for very specific reasons so that I had the ability to attend this amazing meeting.  

Major Irritation!!!!

It's late on Saturday.  I ended up waking up with some pretty intense pain in my face, which resulted in a Percocet (remember my euphoric truth serum) dose.  As a result of taking the drug and the fact that it is almost midnight, this post may be pretty interesting :-).

I had my doctor's appointment on Thursday and frankly needed a few days of trying to calm down before posting a blog.  The interaction with Dr. S. was unusual - he is generally very nice and comfortable to talk to, but this appointment was the exact opposite.  Some of my questions which were science based (I'll share later in the post) were treated and answered poorly - he acted like I was insulting him.

As I've mentioned previously, I want to return a little to work even if it is an hour a week.  Dr. S told me that I need to focus more on life and specific things that are enjoyable and that work shouldn't happen.  WHAT?  I'm bored and really there are only so many things I can do at this point, but why would returning partially to my normal life be a bad thing?  I pretty much viewed this as him saying "guess what, you are dying.  You better enjoy the last few moments."  Now, he didn't say any of that, but it was a conversation that irritated and upset me!  Once I explained my rationalization about working he said fine I'll sign whatever paperwork you need to return.  SO.....right now I'm thinking that he was having a bad day or some type of issue occurring.  He did need to get various phone calls during my appointment and a few yawns occurred, which I never saw before.  Perhaps there were issues with another patient that were emergency based.  Anyway, I'm trying to think and view this a little better as the days go on, but I'm not a good person to tick-off!  I hold grudges and this really shouldn't occur with the person who can/should save my life!

The scientific based questions I have posed to Dr. S. have been conjured up by me since the first round of chemo was a failure.  Despite the fact that I had to stop breastfeeding in July, I am technically still lactating.  (Apologies to anyone that finds this uncomfortable to read).  I found out that women who are lactating and have breast cancer typically have tumors that grow because of estrogen.  Sarcoma doesn't have the same type of issue; however, my diagnosis is technically "indeterminate," which means that my tumors are unique and haven't necessarily been seen in this manner.  If that is the case, then it doesn't seem entirely crazy to me to hypothesize some issues that might explain why things are different.  Of course as a scientist my thoughts are not without research.  Here is the paper and quote that initiated this thought process:
"The Complexity of Management of Pregnancy-Associated Malignant Soft Tissue and Bone Tumors."

Although certain types of sarcomas have been
shown to express estrogen and progesterone receptors,
the implication of such receptor status in tumors associated
with pregnancy is unknown [19]

To make things more interesting, my abdominal tumor has decreased in size.  It became noticeable when I was going through radiation and no chemo.  (Remember radiation was only on the back and face).  Knowing that my pregnancy hormones are decreasing despite the fact that I'm still lactating a little could it initiate the decrease in size?  The other way to think about this is was the tumor big back at the beginning because of the pregnancy hormones?  From what I hear this could potentially be an easy test; however, Dr. S. doesn't see any possibility in the hormones playing a role in my cancer and frankly treated me as an idiot.  

Just to mention, the next steps in treatment are not for a while since the radiation just finished.  I will have another CAT scan on the 18th (hopefully it's not another that sends me to the hospital!) with chemo treatments starting late November/early December.  Dr. S. is still uncertain about which type of drugs to start with and I'm not sure how he would choose one over the other.  

I'm planning on enjoying the next few weeks without treatments while still being conservative about the types of things I'm allowed to do especially after the back radiation.  I might hit up Sugarloaf craft festival today, but in a wheelchair to avoid the issues with long walks and I have an exciting meeting at work on Tuesday that I'm really excited about.

So despite a crazy doctor's appointment I have things that excite me and wonderful kiddies, hubby, family, friends, and wonderful supporters that really make me happy!

Last Day of Radiation

YEAH!  Today is my last radiation day (at least for the two tumors needing it)!  I'm hoping that with it completed now I will start gaining typical hearing back and have less swelling in my face.  My taste buds are off too.  I made my Great Aunt's famous cheesecake for the Radiation Oncologist employees as a thank you, but I won't have a slice yet until I can taste things better!  Two things to share here - despite the fact that the recipe is a major family secret, I had to have my father help (he doesn't have the recipe! lol!) and the people who have interacted with me at the hospital have been amazing!  They have made me feel good in so many ways.  BUT...recipe is still a secret!

I had a meeting with the Monsignor from my church yesterday, which was pretty awesome.  I did get blessed, which resulted in some tears.  We spoke about my situation in a positive way, which is perfect for me.  We joked that a book or movie needs to come out of this!  There are so many interesting things that have happened through this terrible illness.  Again, there is some big reason as to why it is occurring, but we are still figuring it out!

I had a very busy day yesterday.  Between my appointments and lots of phone calls I was worried about managing Halloween with my boys.  Since my wonderful neighbors helped me out with golf cart transportation, I did get to experience the holiday with my boys.  These are the things that matter most in the world - being able to share wonderful things with your kids!

OK well this blog is creating too many happy tears so I'm going to stop writing.  Doc appointment on Thursday so I will try and update what the next steps will be.  

Chatting with me

It's been amazing the number of people that are supporting me and frankly the numbers are increasing!  So I'm offering up a handful of things.  My email address is now public on this blog, but in case you can't find it it is jennie.dilemmo@gmail.com (hopefully I won't get spam!).  I will say that I don't frequently respond since I do get a lot of emails, but I'll give you an example of one of my favorites.  A friend of mine writes an email to me every week with positivity, prayers, thoughts, and really just anything to help me out.  We agree that I don't respond back, but he still writes to me every week and I love it!  Although if you do have questions, I will certainly respond!
I am also on Facebook so if you want to request me as a friend I will do that as well.  I didn't realize it, but some colleagues of mine didn't know I was on Facebook or even had a blog.

Just to update on treatment.  I finish radiation on Tuesday.  The cheekbone radiation gave me more fatigue, but still not nearly as bad as chemo.  Today I'm not hearing very well which is not an unexpected symptom.  It might be a long term issue, but I have had days where the ear is really good.
I see Dr. S next week so I will know the next steps in terms of chemo.  Hopefully, whatever the next treatment is I will not experience side-effects, but I'm definitely wanting dead tumors!

Radiation, Energy & Bordem

Radiation has been a relatively easy and interesting experience.  The back area that was started on October 7th is complete while the cheekbone hits day 8 out of 12 today.   I feel really good lately - I have more energy, but I'm not allowed to do certain things.  I have to continue to protect the back by avoiding lifting, long walking, or anything else that causes discomfort.  However, I have been able to do things with the back that was problematic for a long time.  I make myself pancakes for breakfast regularly now and have even made cookies!  I do have to continue to be conservative which is not typical mind set for me, but it is really important. 
I am going nuts in a lot of ways now since I feel good.  I'm bored and frankly tired of being home so much.  It will be interesting to see how I feel with the next round of chemo treatments.  I'm not sure when it will start or what the typical reaction is to those drugs, but I'm going to try and attempt some normalcy.  I want to chat with the doctor about returning to work even if it is for an hour a week!  Again, I'm going to behave and approach things slowly and with caution, but if I feel good even through treatment it shouldn't be crazy to work a little! 
I did have an unfortunate experience last night with Braeden where I found I can't control him physically.  I'm certainly not even close to 100% despite feeling good and it is obvious that it will take a long time for me to get back to normal.  Despite what occurred though I should still be pleased that things have improved even slightly.  I've at least learned to approach things better and without complete insanity and perfectionism!

Finally reporting...

Many apologies for the late blog.  It has been a very emotional and busy schedule since the meeting with my doctor last week.  Unfortunately, my body did not respond to the chemo treatment, meaning that the tumors did not die or shrink.  As a result, two of the tumors became highly problematic to my brain and legs.  If these tumors did not experience radiation immediately, especially the back tumor, I could have dealt with severe problems to those areas.  After the doctor's appointment last Thursday, we were sent immediately to PA Hospital to start radiation.  The radiation oncologist actually recommended a colleague that works at a hospital near my home.  Since radiation occurs every day it is much easier to manage a quick trip nearby as compared to a terrible trip down to Philly. 
Today was treatment #6 for the back tumor and I have  4 more to go; however, the cheekbone tumor will start its 12 days of treatment on Monday.  The cheekbone tumor since it is so close to key organs, salivary glands, ears, brain, eyes, mouth, etc. they are using highly advanced and specialized technology to avoid issues to those areas.  It takes a long time for planning and many people like radiation oncologists and physicists to derive the exact plan of action.  I don't have a complete view of the steps after radiation since the doctor's appointment was fast to get me to the hospital, but chemo will start again at some point to deal with the other tumors that exist.
I did cry like crazy last Thursday and have dealt with a lot of emotions the last few days, but I've headed back towards my fight towards positivity, health, and success!  This is really a terrible result in some sense, but perhaps it really is the correct and best way to progress and deal with these nasty tumors!    

Recent Doctor Visit & Request for Help!

Thursday, September 29 was the most recent doctor's visit with great blood values.  My white blood cells and hemoglobin were both good this time so no more antibiotic (woohoo!) and more energy!  Frankly the doctor joked and asked if the blood was Michael's (my hubby) or if there was issue with getting the blood.  I do have great energy levels so it is possible that the hemoglobin values are frankly realistic.  I am certainly able to do more things and just walking up the stairs is easier; however, since I've been so sedentary the last few months I don't have huge physical strength.  Fatigue and physical strength are very different experiences!  I guess the way to explain the main difference is that with physical strength you can at least progress a little when you feel weak whereas with fatigue you feel like you will pass out or collapse.  Even though I have energy I sense that my body still wants to relax and sleep.  I hope that I have the right approach by following those senses.
Request for help, support, prayers, and the like....
CAT Scan to determine how things are proceeding is tomorrow.  I'm nervous and scared, but I need to stay positive.  It is difficult to think about so I'm trying to avoid that as much as possible!  Thursday will be the next doc's visit to go over the results. Because I've been learning how to ask for help, I'm wishing that all of you do something to request good values for me!  Since I'm so worried it is best to avoid chatting with me for a few days, but if you want to text, email, Facebook, or comment feel free!  Love the help!  You guys are helping me gain positivity which is the key to health!