Chemo & Christmas

I experienced the beginning of round 2 for chemo the Thursday before Christmas.  I didn't expect the level of fatigue and side-effects from this treatment.  You have a tendency to forget the intensity of other treatments, but it soon became apparent that this round was taking the lead.  Things were not terrible, but I was extremely fatigued and tired and dealt with nausea and indigestion.  It doesn't help things that I'm dealing with radiation side-effects in my nose and mouth as well; I have thick saliva and mucus that is not associated with a cold.  As mentioned in my previous post, I'm on Neurontin for nerve pain, but the dose has increased especially for the night.  I'm thinking that we might have to increase the dose even more since I've been having quite a bit of nerve pain.  Frankly with all these issues that I'm not used to I'm hoping that the chemo is doing something positive.  Most people who succeed typically have to deal with side-effects and pain.  Tomorrow is the last half of round 2; it is the first drug Gemzar with Taxotere.  It is this combo that provides more side-effects and some strange ones like neuropathy, which is more nerve issues!  I guess I'm used to nerve issues at this point :-)
On a positive note and despite side-effects, Christmas was wonderful with my family.  The boys were so excited about Christmas and the gifts.  Braeden, my 3.5 year old, was acting as Santa for quite a few days and was super excited in opening the gifts.  Colton who is almost 9 months is still playing with his new toys and of course likes Braeden's as well!
I have not done this before, but I'm sharing pictures on the blog.  Happy Holidays everyone, hope it was a wonderful time for everyone!

Philly vs. Boston

November was quite busy.  I didn't share this previously, but a few days prior to the wonderful seminar at work I chatted with an oncologist colleague that helped initiate an appointment with Dr. D.  Dr. D was at the seminar interviewing his patients and was mentioned to me months ago by my doc.  He explained that Dr. D from Boston was very well known and possibly a better oncologist than him.  Based on the emotional appointment with Dr. S and the chemotherapy failure, it was important to see this other expert.  Interestingly, he no longer sees patients so I technically made an appointment with another doctor that Dr. D recommended.

For some reason the week of the appointment ended up being very emotional for me.  I'm not entirely sure why, but perhaps it was anxiety.  I had to travel via Amtrak since the radiation side-effect on my ear did not allow flying so I was concerned about being comfortable during a 5 hour trip.  It was decent, but after arriving on Tuesday night I certainly wasn't up for a nice dinner out or doing anything else in Boston.  It was room service followed by sleep.  I actually ventured to the hotel's restaurant for breakfast the next morning, but I ended up laying down on the booth during most of the meal.  Again, I'm not entirely sure what caused these 'actions,' but after breakfast I was back in the hotel room sleeping again!

Michael eventually wheeled me to the hospital for my appointment in a wheelchair.  In a lot of ways this has become my new transportation mode.  (It is strange to be in a wheelchair while in an elevator!)  The hospital was impressive with lots of young students and interesting technology.  I had to wear a GPS type device that indicated how long I was waiting for the appointment and where I was in the building.  I certainly never had this experience before even at some of the country's best hospitals!  The appointment was a few hours long - HUP and PA Hospital didn't sent up all the required documents, images, and other required medical records in time so most of the appointment was discussing the CAT scans and medical info.  Interesting, Dr. D was actually at my appointment a few times that day and shared his opinions.  Frankly, both Boston docs were very much in agreement with Dr. S and were proponents of me staying with him, if I was OK with it.  

We took the trip home on Thursday and then went for another CAT scan on Friday at Radnor to see the status of the tumors without chemo and the size for the ones with radiation.  We found out on Monday, it was a Dr. S appointment, that the tumors did not change size -GOOD! It would be certainly worse if the tumors increased in size after not having chemo for such a long time.  We also discovered that the abdominal tumor had a larger amount of necrosis, meaning that more of it was dead!  It was amazing that the results were actually agreeable.  I didn't have to head off to the hospital after this CAT scan!

Dr. S and I discussed the Boston trip; he was very acceptable and open.  There were no nasty emotions and frankly Dr. S showed a sense of collaboration and easy interaction with the Boston folks.  Before the beginning of the next treatment cycle we had to wait for pathology from Boston.  Depending on the result the chemo drugs would change.  I was hoping for the easy one - although compared to my first chemotherapy in August, anything is easy.  It was approximately a week before we found out that Boston shared the same diagnosis, which resulted in a mixed feeling from me.  It was good to know that the two hospitals came up with the same result, but it would be nice to have an official type of sarcoma.

I started treatment right away - word from Boston came on Tuesday and treatment started on Thursday, December 1.  I started off with Gemzar on week 1, then Gemzar & Taxotere the following week.  Week 3 is free from treatment and then the process starts again.  So far it has been rather easy - I do experience the typical fatigue, but other than that few side effects have occurred.  We'll see how the next round goes! 

I am dealing with neurological pain however; which is not fun.  It is not chemo oriented, just related to the tumors.  It was obvious even before Boston trip that my pain medication Percocet was not working.  Considering that it is an intense narcotic I was surprised that it wasn't working and was frustrated that it resulted in many sleepless nights.  After explaining this to my nurse and sharing a story that when I had an itchy sensation in my back I couldn't feel my hands scratching it - ah ha - we have nerve issues.  I am now on neurontin and have found a huge difference in how the body feels.  I still need Percocet every so often, but not nearly as much.

I've been working on the holidays.  I did get to work's holiday party, shopped for the boys, and helped decorate the house.  Braeden is super excited about the tree and ornaments.  It's been an exciting and wonderful time - truly looking forward to Christmas except I already know that I'm getting a bad gift that day (has to do with required paperwork).  I will share after the holidays.     

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!



   

5 Day Update

Based on prior blogs, I have mentioned that I dislike the 5 day treatment.  Frankly, it is a difficult week; however, I did much better this time around.  I did change the schedule so instead of starting at 9AM and waking at 7AM, the appointments were at 10:30 AM.  I did wake early in the beginning of the week and saw the kiddies off to daycare; however, the rest of the week despite being awake I stayed in bed.  The week is really a blur - I don't recall when things happened.  I do remember the extraordinary help from neighbors, but not sure what days they helped.  Despite these oddities, I really felt better than the first time around.  I didn't sleep incessantly during the week and even ended up hanging out with some friends on Friday (I even ate DQ ice cream after vomiting!).  I do experience some vomiting with the 5 day treatment mainly because I don't eat enough.  Generally, if I eat too much or not enough I get sick.  With this treatment, I have no appetite during the week and when I get back to eating regularly I'm a little off - it could be much worse, but I have only vomited once per day.
I now have a CAT scan scheduled for the first week of October.  It makes me quite nervous and I'm not entirely sure that the tumors will be smaller.  The initial CAT scans were done many weeks before the start of chemotherapy and it wouldn't be entirely surprising that there was more growth.  Despite that rationale however; it is important that I hope/wish/pray for the best here!  I do see and feel change with all the sites.  With the cheekbone tumor as things progressed I dealt with more nerve issues - the left size of my tongue and teeth were numb.  The numbness, believe it or not, in that regard is changing - I think it's receding!  My back doesn't seem to be in pain anymore or at least I can't remember when it bothered me.  My stomach is changing, but it still looks rather large unfortunately.  I have two thoughts on this - this tumor started in a post-pregnancy body, which is quite flexible compared to the norm.  I never really had an opportunity to get the body/stomach back to normal - does this mean that the tumor might look larger than in a normal, less flexible body?  I have also heard that there could be an accumulation of fluid, which would also make the tumor seem larger.  Overall, I do think things are changing - I just hope that we will have positive results soon!

Happy

I had a great week!  I had the opportunity to meet new supporters, hang out with friends, see my brother, and visit co-workers since I had energy and got great blood results on Monday.  I even avoided lots of naps because of these busy trips for me and made me think that sometimes those naps result from boredom.  It is true about the boredom; however, I still need to make sure I'm adequately rested!
I will keep this short for a change since I was told I write a lot :-) The interactions this week helped my positivity climb!  I frankly was not moving up the "ladder" recently like I should.  It was all of you who made me feel great that the climb is back.  I'm just hoping that the apex is warm and all of you will be there to celebrate with me!    

Definitely not a rule follower

On Monday I met with Dr. S again to go over blood work and typical issues after chemo treatment.  It was very obvious that the Doc was amazed at the blood values - no more antibiotic until next cycle since white blood cells are so good.  The hemoglobin wasn't too bad either considering I'm anemic.  I did ask what these values really mean with respect to treatment and health.  They don't have anything to do with the cancer, but since the values are so good we can continue to progress treatment and get to health in an easier and faster manner.  I do feel that this is still good news and it isn't necessarily typical for sarcoma patients.
Doc did look at tumor sites, but didn't suggest that they have changed size.  He doesn't have measurements and only sees me every few weeks.  I do feel differences in my body as a result of size changes, although the tumors are still obvious because of their size.  I do start treatment again on the 19th and then a CAT scan will follow soon after that.
An interesting notion to share - I made a comment to the doc that I don't seem to follow the rules in terms of side-effects, blood work, etc with chemo treatments.  He completely agreed and even used that phrase himself in the appointment.  I do believe that this is positive!  It would be interesting to know his exact feelings and thoughts on everything, but he will always have to maintain a typical MD response.   He certainly won't suggest any wonderful and crazy things unless there is proof.  Lets hope that the CAT scan in a few weeks will show amazing results that will prove health is coming along!    

Thoughts

I've had interesting mental and emotional issues the last few weeks.  Frankly, I'm confused.  There really isn't any data to suggest that I'm moving towards health or is there?  I don't seem to follow most of the typical patterns of treatment - I don't experience most of the side-effects except for fatigue, I still have hair, my blood values are great and I typically feel better and healthier as the chemo treatments proceed.  Should I be focused on how I feel and how things are changing physically?  For some reason these thoughts and questions have been very emotional for me.  I do however, have something I should focus on with regards to these questions.  Braeden, my 3.5 year old has had a very difficult time interacting with me since July when I think it became obvious to him that mommy was sick.  All of a sudden, as I have felt better, Braeden is now interacting, chatting, and playing with me.  Children are intuitive - he definitely doesn't know what is occurring exactly, but perhaps he thinks mommy is getting better!  This definitely brings tears to my eyes - perhaps this should be my focus.  My boy is letting me know that I'm getting better. 
OK - emotions put aside. 
I had treatment 2A last Friday after making the decision to delay it due to the power issues at the office.  I'm very happy that I had more time to relax and recuperate from the 5 day cycle.  Again, it was an emotional decision because I wasn't sure if I was negatively affecting my progress towards health.  It is interesting to note that I feel good after this treatment - even better than treatment 1A.  I have more energy and have spent more time with my kids!  I'm wondering if the continued treatments will make me feel better and better.  I do hope that this is the case with the 5 day cycle since it was difficult!
Days are moving fast for me perhaps because of some additional napping during the days, but I need to blog more!  I will try to update more often.     

Today

Today was the cycle 2A treatment.  Yesterday I was mentally prepared to go back for treatment unlike Monday when I was wishing for rest and more days off.  In that sense I think my decision that I was so uncertain about was correct.  I would rather go prepared and wanting the next step in treatment. 
Treatment today was OK except for the fact that my appointment was at 10:30 and things didn't start to 11:45.  I'm relatively flexible and understand when an office is busy, but I was concerned that they might have forgotten about me.  Obviously they were still dealing with the fact that the power never returned to the office until Wednesday.
I didn't have many side-effects from cycle 1A of this treatment, but I'm still hesitant.  You never know with these drugs how you will react especially if your body is changing.  So far I'm not as fatigued as the 5 day treatment, but we'll see how the next few days go.  On that note, Happy Labor Day to you US folks.  Enjoy the time off!

Postponed Treatment

Cycle 2A did not start on Monday due to a power outage at the doctor's office.  By accident however, I never received a phone call about not going to the office.  I did get a chance to see one of the doctor's on Monday about some abdominal issues I've had that I was potentially worried about.  Dr. H (not my normal doc) gave me the OK/Good about what was going on.  What I've been feeling is the tumors breaking down!  Granted we don't have a CT scan to prove this right now, but I'm happy with the OK/Good explanation.
Again the doctor's office today still had no power so I needed to make a decision about how to proceed.  I was given the option of going to the hospital in Philly to get treatment or I could wait to start the treatment.  I ended up becoming very emotional about this since I didn't know the right answer.  Even after discussing this in detail with the nurses and eventually my doc, it turns out that waiting a week is typical for other sarcoma patients and will not hurt me.  I really wanted more time to recover after the 5 day treatment, but I didn't want to make a decision that affected my path to health.  Ultimately, I decided to delay treatment until Friday.  Not only do I get extra time to recover from the 5 day cycle, but I add recovery time after the 2A cycle by doing it on Friday and not on Monday.  I truly believe that some how God had created this for me.  I pray for help, but am not necessarily specific in my requests.  I really hope that the extra recovery time makes for a positive experience and may help the path to health!   

Thursday Doctor's Appointment

I'm getting behind the ball here with posting - I ended up resting a lot this week.  I'm not sure if it's necessary or laziness at this point.  It takes quite a while after the 5 day treatment to feel decent.  The good news is that I had another Thursday doctor's appointment and my values look good again!  I was able to get off the antibiotic due to good values and I'm set for the next chemo treatment on Monday.  The doc wasn't as amazed as the first time, but remember after the 5 day treatment I only had 6 days to get values back to normal.  After the first treatment, which is only 1 day, I have 10 days for my values to build up again.  Those extra days at home make a big difference from an energetic stand-point - I'm not happy about having to go through treatment so fast after the intense 5 day treatment, but I need health and success! 
Technically Monday starts cycle 2.  Cycle 1 is to prevent spreading and growth.  Cycle 2 is to make the tumors smaller.  Fingers crossed for a much better waist line and improved cheekbone size!  I don't really have vanity issues, but if the reduction in size means health I'm totally wanting it! 

Anger at Levaquin

This is an anger infused posting.  I am prescribed Levaquin for day 7 to 14  after a chemo-treatment when the white blood cell count is low - it is supposed to help me fight any type of bacterial infection.  I had issues with it after the first chemo-treatment when it caused a lot of pain under my right rib.  Luckily since the white blood cell count was high I was able to stop the treatment.  I did have to take the drug again on Sunday and ended up with even more pain than the first go around - I had to take Percocet to help with the pain.  There is no way I should be taking an antibiotic that produces such side effects that Percocet is necessary.  I was awake every hour last night and ended up taking the Perc at 3AM.  I was so stinking frustrated and angry with that drug last night that I called the docs office and completely refused to take Levaquin anymore.  I now have another fluoroquinolone, Cipro, to take, but instead of only 1x a day I have to take the Cipro 2x.  The complication with this is that it is a metal chelator (metal binder) so I have to take it 2 hours before my MgO or 6 hours after twice a day.  URGH!  Hopefully, I won't have the same side effects!  I'm hoping for a great white blood cell count again on Thursday so I can get off the antibiotic!

Last Week Update

Sorry for the lack of posting this week - the 5 days of chemotherapy was tiring.  As I was starting to write a blog post on Wednesday I was commenting on few side-effects like fatigue, but a quick rush to the bathroom was necessary to deal with some vomiting.  Needless to say the blog never got posted! 
I had a few vomiting issues with this round of treatment, but for a handful of different reasons.  One of the medications gives me extraordinary pain in the tumor sites and I took Percocet during the treatment (OK'd by the nurses) and it ended up with more vomiting, but no nausea.  This weekend around the same time every night regardless of whether my stomach had food or not resulted in a quick vomit and feeling much better afterward.  In Jennie fashion, these are not typical side-effect issues.  Today I have a much better energy level yet I'm always concerned about changing symptoms.  I am experiencing pain in tumor areas quite often, but it is a reminder that the treatments are fixing them! 
When the side-effects are most apparent I do feel more negative about things - why am I going through this?  why this cancer? my poor boys and family! how long do I have to deal with this?  Frankly it sucks and I hate it, but I do need to fight hard!
I've started to lose my hair and apparently it is a little late.  It is typically 2 weeks and people are completely bald.  This is the start of week 4 for me and I do still have hair, but some balding spots.  I did however go crazy with the hair loss so I'm now shaved like hottie Natalie Portman from back in the day! 
I have lots of thanks to give from this week.  I received help in transportation to and from the doctor's office for treatments, support from the neighbors that will help with the co-payments, lawn mowing, being honored in the Livestrong Race by the Allens, wonderful babysitting, and being fed by numerous colleagues and neighbors!  Many thanks to you all - I end up shedding tears of happiness when you guys help me and my family so much!

Tomorrow is Cycle B

Monday, August 15 is the start of cycle B.  I'm scarred and concerned about how my body will react since we are starting with 2 different drugs from cycle A.  I have 5 days straight of treatments for roughly 6 hours each day.  I am trying to convert my thinking to the positive - my body needs this treatment and so far things are working out well!  It is still unnerving about the unknown, but hopefully after tomorrow I will feel more confident.
I can't verbalize how wonderful people have been to me and my family and if you know me well enough I talk like crazy!  It has truly been heart warming and happy tear forming with how people have supported us.  Many thanks to all of you.  It has been very helpful and has contributed to a positive attitude.
Wish me luck tomorrow - I will try and update this week when I'm up to it! 

Doctor's Appointment Today

I'm going to keep this short - something unusual for me, but I haven't slept well in 3 nights and I need to rest. 
AMAZING doctor's appointment!  This appointment was to check my blood work and see the value of my white blood cells.  Dr. S said WOW countless times as well as saying how amazed he was about my values.  Turns out that I don't even have to take the antibiotic anymore to prevent me from getting sick (usually used on Day 7 to Day 14).  I only took the antibiotic until day 10 and perhaps didn't even need to.  So frankly, think about it this way chemotherapy is supposed to kill all the bad and good cells.  My good cells built themselves up in amazing time.  At least in a time that a seasoned doctor in sarcoma was WOWED!

Question for Medical Professionals out there

My diagnosis took a long time and a lot of my symptoms seemed unrelated - back pain, cheekbone pain, distended stomach.  I wonder however, do doctors not consider cancer to be as probable in young people as compared to older adults?  For instance if you had a 30 year old with certain symptoms, like mine, and a 60 year old with the same symptoms, would the approach toward diagnosis be different?  I wonder if this is the case and perhaps something that needs to be addressed.  Perhaps because sarcoma is typically difficult to diagnose it falls into a different category, but what about more common cancers? Does it take longer to diagnose younger cancer patients?

Experience from 1st Chemotherapy Treatment

Frankly, I was scarred of starting chemo, but really felt that the treatments needed to start immediately.  It was a few days prior that I really felt my body was not doing well.  It is one thing to experience pain, but another when you feel things are getting worse.
What you see on TV with regards to cancer and the treatment is not accurate at all - or at least what I've seen.  Most of the treatment time is spent getting drugs to help you with side effects.  I ended up getting a steroid, anti-nausea meds, and another med to protect from what I think was bladder problems.  All of those drugs were given before the 3 different chemo drugs and then a few followed up after.
I am very aware of my body in general and I certainly felt the drugs working in those key areas.  For instance, I ended up dealing with my left eye twitching during the chemo drugs since the tumor in the cheekbone causes issues with the nearby nerves.  By the way, the nurse said that some patients really do experience and feel the medications working in the tumor sites. 
I felt a little nauseous after the treatment, but nothing too bad.  I took one of the pills prescribed that was for sleep, nausea, and anxiety before bed just to be on the safe side.  I still felt the medications working even in my stomach.  Honestly it was the first night of continuous sleep that I had in a really long time!
I felt better than I had in quite a while the days after treatment.  I didn't really have any side-effects and I'm not really sure if I had the major side-effect of fatigue.  I ended up sleeping a lot! However, after having a 4 month old baby and writhing in pain almost every night for a few months, I might have been just catching up!  I still have pain in the tumor areas, but it feels different than before.  I am convinced that the pain is due to the tumors decreasing in size and going away.  I do believe that the sizes of them have already decreased - even if this is not entirely accurate it is a good thought process in positivity.   
I did have a few bad days in terms of my emotions - I've been told that I'm entitled to have those moments, but I just need to get back to a positive fight.  It also doesn't help that both my boys have colds and it's extremely dangerous for me to be near illnesses as my white blood count is decreasing.  I've spend most of the days in my bedroom away from the colds and I hate not spending time with my guys!  I do see them a little at night, but hugs, kisses, and close contact is out.  I'm currently on an antibiotic to prevent any bacterial infections.  This is normal procedure not because the boys are sick.
I see the doctor on Thursday and we will check the blood to see if we can start with cycle B of treatment on the 15th.  That cycle scares me - I'll share my thoughts on that in a different post!