Thursday, December 5, 2013

Land Of Fruitfulness VI

I am beyond frustrated mainly because in my opinion there really is no reason for this frustration as everything could have easily been organized and avoided.

Needless to say I am at the very beginning of this journey despite the fact that it has already been occuring for 6 months and I fully understand that this has the potential to go on for years and many people have done what I am doing for a long time.

I have done everything everyone has asked, I have done what my oncologist has told me which was basically just to jump through the hoops. I had an echocardiogram done which I knew I didn't need, I have faciliated commincation between multiple doctors offices when they really should have been able to do it themselves considering they are not only with the same hospital but in the same building and use the same medical record system. Now when I finally think I am all set there come yet another bump in the road but it appears to have the possiblity of being an even bigger obstacle deoending on the outcome.

Since I completed the preliminary testing months ago the plan has been to move forward trying artifical inseamination because I am so young and it seems as though everything should respond well to fertility drugs, etc. If that didn't work then of course there would be the plan B of invetro. but that would be later on down the road.

After I had the echo and got everyone all connected to be cleared to start fertility treatsments we then just began the waiting game of a new cycle. Which for me is always an unknown so that was fun. I was elated Wednesday when I discovered I had started a new cycle (or in laymens terms my period arrived) I called as soon as I had a second and tried to get things moving. There was a minor miscommunication that resulted in my speaking to the on call doctor that night around 6pm because I thought I need to start the shots that night. Only to discover that doesn't happen until day 3. Whoops, hopefully I am not being noted as a diffiicult patient cause I am not trying to be.

So then Thursday I awaited another phone call to get evrything setup. The nurse called and told me I needed be in Fridat at 8:30am for all the baseline testing and then I would get a call mid afternoon to start the shots. I would also be getting a call from the pharmacy about arranging the shots. I was so excited thinking maybe this was actually happening FINALLY!


Then I got another phone call from MGH I can't for the life of me remember her name but she is the one submitting the authorization to my insurance company for all of this. She informed me that based on my medical record I didn't meet the criteria for this to be covered by BCBS because of one hormone level being at 12 and their cutoff is 10. She proceeded to tell me that there was a very good chance they would deny me. So I needed to decided if I wanted to go ahead knowing I could be denied in which case I would have to pay for everything which would be a couple thousand dollars. For some people that might not be an issue but for me I don't have a couple thousand dollars laying around if we did need to pay. So basically the only option was for me was to wait until they get the approval or denial back next week and then hopefully try again for my next cycle (whenever that will be). 

I of course asked if I was denied then does that mean I could never get any kind of fertility treatment without having to pay for it? She said there would a good chance I would approved for invetro. I explained how that didn't make sense to me because inseamination was pretty much entry level to all this therefore it is less invasive, less expensive, etc. so why would I be denied for that but approved for invetro which highly invasive and very expensive? Her only response was that because with the slightly elevated hormone level the success rate of inseamination was lower but invetro would have a higher success rate. I would say I could agree with that if they tried it once and it didn't work but otherwise I don't get it at all.

The part that brings about my frustration is this has been the plan for months and even if they were waiting to get clearance from the echo and such, all that was done at least two weeks ago so why didn't they submit an authorization before today? They have my medical record, they know the qualifying criteria for the insurance company. If there was even a question that it might not be covered (which would seem to be a concern for most people) they should have been organized enough to have this all set. I feel like I have been jumping through all their hoops and getting nothing in return. 
I feel lost as though I am supposed to just know all of this. It's not like there is an orientation to this process we are basically flying by the seat of our pants.

So I am frustrated in having to postpone even longer with high possibility of not begin able to proceed as planned which in my opinion would be like starting from the beginning.

If there is anyone out there who would like to be our fertility sponsor please let me know. I really wish there were more resources for fertility post cancer treatment!

Thursday, November 14, 2013

Land of Fruitfulness Part V

So although at this nothing is fully definitive the likelihood of all my fertility problems being caused by my chemo is pretty good. Having said that I have run into a new area of cancer survivorship that is under served, post treatment financial fertility help. I have looked and looked, I even contacted LIVESTRONG patient advocat services for their help and they don't have any resources either. I finally found an organization that offers grants not specifically for fertility but at least includes it as an option/possibility. The organization is called The SamFund (http://www.thesamfund.org), which is actually a boston based non-profit offering grants to people affected by cancer.

The process of applying for a grant in some what involved but not overwhelming. It is a two part application process but does involve submitting a lot of financial information. And then there is the waiting game to find out if you were chosen.

I was lucky enough to be chosen out of the 600 applicants to send in my part II of the application. However out of the 200 people that submitted part II I was not chosen. This was disheartening mainly because I can't apply again until next June and even then there is no guarantee that I would be awarded the grant. I am sure that as bills arise Lewis & I will find a way to figure it out or so I hope. 

But really aside from announcing I didn't get the grant there are some other reasons I choose to include this as a blog post in my fertility journey. 

First being to bring awareness of the lack of support financially for post treatment fertility issues. There are many people like myself (especially my fellow bold cancer patients) who need treatment so quickly that we don't have the option of time to peruse fertility preservation. I had very limited options regarding my fertility before my treatment. I took everything that I was able to in regards to that as I was a large concern of mine. I needed life saving treatment right away, which I am thrilled I got and would in no way trade that in by any means. But not being able to freeze eggs or try any other fertility preservation techniques has left me needing help and even more of a financial burden on my family then we already had. My goal would be to focus on spending more time on this topic which I plan to do but with most my current time and energy being focused on my own current situation I am afraid it will have to wait a little bit. However if anyone know of any local resources please share the info with me.

The second thing I wanted to share was for everyone out there who has not experienced cancer in some form whether it be yourself or a close family member. I have had numerous people offer their input or advice based off of their own fertility experience which I do genuinely value as they often have god things to share and offer a point of view that I had thought about. But recently I have gotten some comments along the lines of, if going through the fertility treatments is going to be such a financial burden on you then why are you going to have children? It seems you wouldn't be able to support them either. Let that sit with you for a moment.

I agree 100% that making the decision to have a family is a very important one and most people often base it on their financial situation for when they are ready to start a family. At this point in our lives we would be able to support a family & if I did everything the natural way and just became pregnant there wouldn't be an added expense to that. But because of my life saving treatment that doesn't look as though that is going to be an option. So we have the unfortunate decision of should we presume this route that will cost us lots of money but have the family we want or do nothing and hope the family we want just comes to us?

I hope people understand why I think financial assistance for fertility post treatment is something that needs to be addressed. When you are someone like me who has wanted to have children her whole life having to deal with fertility issues alone is hard never mind adding in the monetary stress.

We figure it out and we will start our family it might just take longer and cost more than most people.

Again if anyone has any resources or information please share by leaving a comment or emailing me alysadventures@gmail.com

Until next time...

Wednesday, November 13, 2013

Land Of Fruitfullness Part IV

I was supposed to have an appointment at MGH with my doctor. The morning of I got a call saying she was home due to an injury (she was/is ok) and that they needed to change my appointment to a phone appointment. I was actually thrilled about this due to the fact that meant I didn't need to drive all the way into Boston!! 

She called right on time and we chatted. After reviewing all the info that the obstetrician had sent her about his concerns regarding my health and exposure to different chemo drugs she decided that she agreed with him about getting an echocardiogram done before we start any fertility treatments. For those of your who are not familiar with an echocardiogram it is basically an ultrasound of your heart to make sure it it working properly. I was/am not at all concerned about this. I have done numerous races which include triathlons as well as months and month of training involving high impact cardio workouts. So I know if there was a problem I would most likely know by now. But based on some good advice I have been given, I decided it was just another hoop I needed to jump through. 

That spawned my adventure of trying to get not only an appointment but the orders out in for the echo. I called the obstetricians office where they informed me it needed to be ordered through the fertility center and transferred me there. I had wait to the next day to get a call back from them. Where they informed that was not something that was part of their normal protocol that I needed to talk to the obstetrician's office. After much go around about having already talked to them and getting sent back to fertility. They then told me I needed to have my PCP order it at MGH. So that would have involved another lengthy conversation with her office. I was quite frustrated at this point that these two offices couldn't communicate with each other and get it done for me vs. having me go through all this. 

My lymphoma nurse practitioner makes fun of me because I do just about everything  through email. Well in this instance the email succeeded again. I tracked down my OB's email and asked for some help. Despite an awful time I had when I met him he responded quickly and was very pleasant. By the next day they had called with the appointment all setup and ready to go. I was thrilled!!

So I went in for my echo which was very uneventful. The man doing it was extremely nice! I was even more thrilled that this time around I didn't need any contrast to help with the image. He said it was most due to the fact that I had lost so much weight! The only down side is that in order to get a good picture they have to press the ultrasound wand into your body with A LOT of pressure to try and get a good view in between and around your rib cage. I still have spots that are sore.


I haven't gotten the final report yet but based on what the echo tech said everything looked great so hopefully we will see. 

Now I'm just waiting to meet with my fertility doctor and see what she has to say and what the next step is. 

I continue to to play the hurry up and wait game!

Until next time...

Wednesday, October 9, 2013

Land Of Fruitfullness Part III

I decided that I needed a little time before I wrote this. Yesterday was a rough day and instead of writing out of pure emotion I needed to take the time to process. Despite giving myself the time this post will most likely be informative yet also a venting session at the same time.

I went to Mass General to have a consult with an OB doctor that deals specifically with Medically Complicated & High Risk Pregnancies which once I am pregnant I will apparently be considered due to my history of lymphoma. I was interested in what he had to say mainly because even I don't know the specifics of how my chemo could have affected me. 

Here is my first vent. If you are seeing a new patient it would be nice to take the time to at least glance at my chart before seeing me. It is very disconcerting to sit and watch you read everything and your reactions to it. I lived once already I don't need to relive it every time someone needs to look at my chart.

Anyway we went through my chart talking about the effects having cancer had on my body, what chemo drugs I had, etc. There were only two drugs out of everything I had that he was concerned with. Considering everything I got that was some what reassuring. The first one is Cytoxin, because it is known to have the potential to be very hard on your ovaries. He is going to look into what my total dosage was so he would have a better idea how much that could be a playing piece in this game. The other drug he was concern about is Doxirubison which can have an effect on your heart. So at some point in this I have to have an echo-cardiogram to make sure my heart is strong and isn't showing any signs of weakness.

After hearing this I am not very concerned about my heart. The way I look at it with all the cardio I do I would think if there was an issue with my heart something would have come up by now. So I figure that is just a precaution.

I am more concerned about the cytoxin. Because judging by the issues that I have had which have lead to me going down the fertility path I feel as though there has been some affect on my ovaries but only time will tell. 

My issue with why this was a rough appointment is that I am not a person that lives in a fantasy world. I am fully aware of what this journey could bring and that there is always the possibility to not be able to have children using my own eggs. However while sitting listening to what he had to say I think he was trying to making me understand all the possible outcomes. He told me that the cytoxin could have zapped my ovaries but even with that I would be able to use an egg donor. He told me that people tend to worry that because I had all these toxin drugs in my body the likelihood of them having affected my eggs making them abnormal is not any greater than a "normal" women.  That 90% of miscarriages are caused because the egg has a chromosomal defect. So basically the bodies way of natural selection. These are all things that I feel don't need to be fully addressed until it comes to light they are an issue. You know the whole we'll cross that bridge when we get to it saying that pertains to this very well. As if all this wasn't enough it gets worse...

He proceeded to tell me about how my weight is an issue as well. That being obese can lead to developing diabetes while pregnant, it has a higher rate of miscarriages, and can be attributed to both under weight deliveries and larger weight deliveries. I wish there was some way to have a neon banner that pops up across my chart saying something along the lines that I am active, have lost almost 90lbs and am trying to live a healthy lifestyle. I (not being a shy person when it comes to this) informed him of my already huge weight-loss, my active lifestyle, being a triathlete and trying to eat healthy. to which his only two replies were, well if you are doing triathlons then I would think the doxiruison hasn't affected your heart. His other was that although my current weight-loss is significant I still need to work on lowering it to be closer to the normal range. He looked up what the normal weight for someone my age and height which would involve me losing another 70lbs. So to start with he would like me to lose another 50-70lbs. I think that was the biggest slap in the face. That I have tried so hard and done do much work to get to where I am and it still isn't good enough. I have no idea how I am going to lose that much more weight but I will give it a shot.

So I guess my real issue is that although you need to make sure your patients are informed it also doesn't help to try and address things that are not an apparent issue. All that does is create more stress and worry about things that you can't control or even know about.

However luckily I have my amazing NP from Lymphoma and she is so awesome that she called me after 6pm yesterday to talk to me about what happened. She made me feel A LOT better. I told her about all of the above and she said that although Cytoxin can be hard on the ovaries I only received 3 doses while some people have 6 so that is in my favor. Also that I am the abnormality (I know shocking) when it comes to patients because if he is dealing with high risk based on hypertension or diabetes most likely he has patients that are not very compliant. Where as I am very compliant and try my best to do what I can to be in a better situation. So that he probably works on the side of scaring his patients into compliance. Looking at it from that point of view made it a little more acceptable. So I decided that I will do what I can to work towards what they have told me but I am not going to starve myself to do it. I really can't thank Bri enough for taking the time to call me after an already long day when she easily could have just gone home!

So now I have to look forward to eventually getting an echo-cardiogram. Oh did I mention that when I had this done before I started chemo they had to use IV contrast and forgot to close one of the tubes and spilled my blood all over the floor? Hopefully we can avoid that this time. And I will see what Dr. Souter has to say about the OB's notes/concerns and where we go from here.

After all this the only thing that kept running through head was..."Cancer the gift that keeps on giving!" I am very lucky to have the outcome I did from having such a progressed disease but I guess the saying is right once you have had cancer it will forever affect your life.

Until next time....





Tuesday, October 1, 2013

Land of Fruitfullness Part II

We went today back to Mass General Fertility Clinic to meet with the Doctor. It was a very good appointment with a positive outlook and everything seems to moving forward.

The results of my HSG were just as the radiologist said, both Fallopian tubes are open with no blockages or abnormalities!! That was very exciting to hear! Lewis's testing came back saying that it seemed artificial insemination was going to be a good route for us to go vs. Invetro at least at first so that was also positive!

The extra good thing about this appointment was that it just so happened to fall on my cycle day 3 which is when they do some hormone testing. I had already had all this done but it was a random sampling because of the spontaneity of my periods. So it was prefect to be able to get a true reading this time.

As it stands right now I have to go see another OB/GYN that deals with High-Risk Pregnancies and Medical Complications so that I can be cleared to proceed. Basically I am going to have to talk about what chemo meds I was on what the potential was for that to have cause a medical complication and I am sure there will be some level of clearance received from my oncologist as well.

Once all that is complete the plan is to hopefully start with my next cycle which is very exciting! I will be giving myself (or most likely Lewis will be doing it) shots of FSH to help the ovulation process. Going in very frequently for ultrasounds and blood work. Once everything looks good  we will go in together. Lewis get's the fun job giving the sample and then I go through the insemination process.

so although this is a much shorter port then the first, this is currently where we are in the fertility process. I am very hopeful that things will go smoothly from here. Although I am aware of what a process this can really be!

Here's to hoping my positive outlook helps us through all this!

Friday, September 20, 2013

A Story Within A Story

This is one my favorite adventures so far! 

As most of you know I have gotten the kayaking bug bad! After talking to several people about my goal and determination to learn to roll by next spring it was suggested several times for me to get this book...

So I finally decided to get on with what I could and found the book on Amazon.com. When I received the book I started flipping through to see what it was all about. I noticed this...
Handwritten on the inside is the name Bradley Kochaniec and a quote "The future is a blank page and you hold the pen."

This is the first used book I have ever gotten that had something written in it. So to say I was curious doesn't begin to describe it. Of course the first thing I do is Google it! There was only one thing came up when I Googled Brad and that unfortunately was his obituary. He died when he was only 19 years old, being that young I knew that there are usually only very few reason someone that age dies, from a tragic event or an illness. 

Now what I did next some people might find a little over the top but there was something about this that I needed to learn about his life. 

His obituary listed the names of his parents. That's where trusty Facebook came into play. I was able to find his mother Carol on Facebook. She actually accepted my friend request and then I sent her this message.

'Good Afternoon Carol,
I hope that this message is not intrusive but I am hoping you might be able to share something with me. I recently got into the sport of white water kayaking. In an effort to further my skills I order the book 'The Bombproof Roll and Beyond' upon receiving it yesterday on the inside cover was a beautiful quote, "The future is a blank page and you hold the pen." Also above that was a name, Bradley Kochaniec. After some research I believe this is your son? I was first like to say how sorry I am for your loss. I was wondering if you might be willing to share a little about him with me? I am a firm believer that things happen for a reason so I am hoping whatever you share with me will help figure out why his name is inside my new book.
Again I hope this isn't to intrusive and I fully understand if you do not wish to share with me. I just wanted to reach out to you.
Thank you for your time and I hope you have a wonderful day!'

Then I patiently waited for her reply hoping that I hadn't severely over stepped my boundaries. Luckily for me a message popped up from her about 3 hours later and that began a fantastic conversation. Carol was so nice and shared openly with me about her son. The book I have belonged to him.

She wrote, "I remember buying him that that book when he first began kayaking. That's my handwriting. He was a great kayaker."

I asked her how old Brad was when he started kayaking. She told me he started when he was in Middle School. After spending lots of time at a rafting outfitter during summers and being invited by older (college age) raft guides to come on their "fun"run with them on river after hours and he became hooked on kayaking. When he became old enough to actually work for the rafting company he went through raft guide training. 

His mom recounted, 'As I recall, spent most of his time in the kayak running safety for the raft trips. This means he was looking out for those that fell out of the raft and making sure the fried chicken didn't get lost before they made it to "lunch rock."'

She also told me, 'Brad got the reputation for being able to read the river and know what the water was going to do and how to safely maneuver the rapids.'

He was starting to get the attention from some of the pros that would be attending events that Brad was involved with. Brad even went so far as to convince an Evolution Kayak salesman to let him take their brand new demo kayak down an 18ft waterfall. He did it agot to take it down Youghiogheny River - Ohiopyle Falls a Class IV. It is Illegal to run except associated with an event or special permit.

He started taking lessons and practicing with Tom McEwan and his team. He began Slalom racing and did well enough that he was in the U.S. Cup and Jr. Olympics in Colorado is 2002!


These photos are from some of his runs during the Jr. Olympics
He graduated and became a freshman at Mount St. Mary's University.
Carol shared, 'At the end of his freshman year, he was going to Mexico and then to Canada with some of the national team members to teach kayaking (they have to earn a living too, lol) and do some serious training with them for the Olympics tryouts in a couple of years.'
It seems Brad also enjoyed teaching. He had some helmets that had large dents in them which he referred to as "Unwanted geological lessons". He took the worst one to any lessons he was teaching so that everyone understood why it was so important to wear them properly. He used to say, " Lots of rocks underwater and you don't want to find them with an unprotected scalp." Seems he had quite the sense of humor.
With the summer planned in Mexico and Canada the scene was set to only bring Brad the next big rapid. However he wouldn't be boat riding on any of those rapids...
"The weekend before finals, Bradley, his girlfriend, and two friends were drinking. Bradley got drunk and passed out. He was laying on his back and vomited. He lived another 14 weeks but with severe brain damage from lack of oxygen. He never would have recovered fully. Brad is buried at Mount St. Mary's Cemetery on the side of the mountain."
While going to school Brad did a lot for the President of Mount St. Mary's. Even now the President still tells Brads story so that the incoming freshmen are more aware of the dangers of alcohol.

Brad's graduating class had his initials put onto the class ring. It was the first time in the schools 200+ years that anyone's initials had been added to a class ring. They gave Carol what would have been Brad's ring.

While paddling down the Potomac River he saved several people from things that could have very welled taken their lives. He even saved someone whose foot was caught over a rock and was drowning in the river. He was a great safety boater, which I can't help but wonder where his safety boater was that night when alcohol played a bigger role in his life then I am sure he thought it would.

I am still not sure this is the whole story as to why his book came to me. Maybe he or someone is trying to tell me that I should pursue kayaking to do what so many cannot.

This is one adventure that I feel like is far from over, it is only the beginning. I am sure in this large or as it turns out small world there is a reason why Brad and his story crossed my path.

The one thing that I keep thinking about is none of this would have happened if this book were available in the digital world such as downloading it through ibooks, kindle, nook, etc. Another reason why the old fashion print shouldn't be so quickly forgotten. But then there is the flip side of without the digital world I would have never found anything about Brad and certainly wouldn't have been able to find his mother. I don't know what the answer is but I am thrilled that this book is now mine.

I want to say thank you to Carol for being willing to share Brad's story with a complete stranger based solely on faith that I meant well. Brad has now certainly touched my life!

I appreciate this experience and even more being able to share with all of you. If anyone would like to share anything about Brad or about this particular book please comment here or feel free to email me alysadventures@gmail.com

 




Saturday, September 14, 2013

Friggatriskaidekaphobia - Part 2

My Friday the 13th adventures continued and this is where an EPIC event took place that was unexpected...
I was meeting some friends from work to celebrate one of them getting a new job and just to hang out at JJ's Sports Bar and Grill in Northborough, MA.

We were all sitting at the table debating about what we wanted to eat. Should we just get a bunch of appetizers and share or get meals. That was when a burger caught my eye. Not just any burger this was called The Heart Attack burger. This burger is two 10oz. patties with cheese and bacon sandwiched between two grilled cheese sandwiches with a full side of fries and a pickle. If you cleaned the plate you get a t-shirt. This was of course tempting because who doesn't love a good challenge.

After some comments at the table about how this needed to happen I decided to go for it. The worst thing that could happen would I didn't finish it and wouldn't get a t-shirt. So I ordered it first asking if I could removed the lettuce, tomato and onion without penalty because I don't like those.

Then the Heart Attack Arrived!
After I removed the lettuce, tomato and onion it was still a huge burger, but I was excited about it!
I was pretty sure there was no way I was going to be able to take a bite with it all together but I was going to try none the less.
I ended up having to take it apart. So basically one burger to a grilled cheese. It was working pretty well and I was slowly making progress. I will admit I had some help because the girls were eating some of the fries. By about the 45 minute mark this is how far I had gotten.
At this point I was starting to hit that food wall. But Over the next 30 minutes I kept working at the persevered to a clean plate!
I think I enjoyed the look on our waitresses face the most out of everything. She had already told me there were several people she had seen try to do it and couldn't. Well I wasn't about to quit so I went for it! That was when she went to tell the manager that I needed a t-shirt.
I of course needed to put it on and take a picture. Our friend Nicole had some other friends at the bar who were also attempting the Heart Attack burger. I finished and they did not! Good to know a girl can still beat the boys :)

Needless to say today was not very eventful as far as food. I was still quite full from that burger! I will not be attempting it anytime soon or possibly ever again but it was fun the first time.

This was the best Friday the 13th by far! I can't wait to see what the next one holds!






Friggatriskaidekaphobia - Part 1

So the word friggatriskaidekaphobia means fear of Friday the 13th.
I assure I do not suffer from friggatriskaidekaphobia especially when my Friday the 13th was an amazing adventure!

My Friday the 13th was marking my first whitewater kayaking experience outside of First Descents. Don't get me wrong it was helped along by FD because they had a kayaking camp there this summer and one of my camp directors Patch was there. So he was nice enough to get me in touch with one of the guides that helped them that week. Clutch is one awesome guy, he was so nice and offered to take me kayaking and even supply all the gear. So we picked a day and it turned out to be Friday the 13th!

Clutch works for Zoar Outdoor in Charlemont, MA. So we met there and got all setup to go. I was so excited because he set me up in this...

 A Jackson Karma! I LOVE this boat! It was a perfect fit (once I moved the foot braces forward). I could not wait to hit the water in this. He also got me a helmet, skirt and paddle. I already had my PFD so I was all set there. We loaded all the gear and head out to run shuttle and start our day.

Another friend of Clutch's Alex was also joining us. He was just as nice and supportive as Clutch!

So I asked Clutch what I should do if I flip since I have not learned to roll yet. Cause I am good at hanging out under the water but if I'm not supposed to then I can easily wetexit as well. He said just go for the wet exit and get myself to the shore with my stuff. It was good I asked because at least now I knew I needed to do it myself.

This was a totally different feeling then being with FD. It is hard to explain but when kayaking with First Descents there is this almost unspoken sense of trust and an underlying safety net. Being out on the river today I still have the trust, I knew Clutch would help me out if needed but that safety net of being taken care of was not there. I needed to be able to do it myself which was a good thing because let's be honest if I am going to really get into kayaking I am going to have to do it myself so I appreciated that. I was independent for everything, I was responsible for the kayak and all my gear. If it needed to get to the put in then I needed to get it there and vice versa. Boy let me tell you I learned how heavy that boat was real quick! I have the bruises on my shoulders from carrying it to prove it.

Clutch explained what the river would be like. Firstly that we would be starting with a rapid right off the bat.

I was thrilled to get started. Clutch, Alex and I started down the river and made it through the rapid. But this particular spot is great for surfing and play boating. So Alex and Clutch went after it.
Clutch told me that this would be a good spot to practice surfing or ferrying across the river. I had trouble mainly because as you see in the picture there was a rafting group (4 rafts) right where we were. I am not comfortable enough maneuvering to do that around larger boats. So I opted to just watch them. Oh I also didn't need an audience for when I flip over cause I am not very good at ferrying. Although that clearly meant I should have been practicing, next time get a little further outside my comfort zone.

There were some really good rapids down the rest of the river. I will say that being the one who is the most inexperienced I was not the first one to swim!! But don't worry I flipped and swam shortly after that. Luckily it was in a rapid and not my usual spots of calmer water getting flipped by a swirly.

I learned very quickly that I needed to take care of myself. So after I wet exited I made sure to have my paddle and grabbed on to my boat. Got myself to shore after hitting my legs a few times on the GIANT rocks or in that case I guess would considered boulders. I climbed out, got my kayak out and emptied and got back on the water.

The rest of the run was lots of fun with rapids and calm water inbetween. We got to the spot right before the rapid named Zoar Gap. We got out and walked over to go scout out the rapid. This is what I saw...
To say that I was nervous would be an understatement but when Clutch asked if I thought I was going to do it there was no hesitation when I said yes! He smiled and said, "I thought you would say that." We headed back to our boats and got ready. Ironically enough as we were walking Alex said, "I don't think I have made it through the gap without rolling." That made me feel so confident. But I was looking forward to it anyway.

Clutch lead the way and I followed. I was doing fairly well until about 3/4 of the way through and I got swept by two currents and flipped over. I knew I need to wet exit quick and get to shore because there was another rapid not that much further down. Clutch got my boat for me and help carry to shore. Went through the motions and got myself all set up again. I peeled out of the eddy thinking I was cleared and guess what I wasn't so the eddy line flipped me again within probably about 20 seconds of the getting back on the water.

Once I got myself back in the boat after a few more bumps, bruises and scratches I was good to go. I made it through the last rapid. But I was able to do an amazing boof right over a pretty big rock and that was so FUN! 

The red circle it where I boofed. The whole boat was basically under water where you can see the all white water.
Then we headed to the take out.

This is a short video of the Zoar Gap just to show what I paddled through.
video

I was so excited to have been able to paddle my first river with very few swims considering what it could have been. I feel even more confident that I can actually develop the skills I want to. Thanks again to Clutch for taking me down the river and making it a great and successful day!

Bruises and scrapes but so worth it!
Left leg bruises and scrapes
Right leg bruises and scrapes



Wednesday, September 11, 2013

Find The Land Of Fruitfulness!

So I have debated with this for sometime about what I wanted to do, if I should blog about this particular "adventure" in my life or not. But the more I thought about it the more I came to realize it is highly unlikely I am alone and therefore my experience will hopefully someday help someone else.

This is where the disclaimer comes in. From here on out this becomes very personal. There may even be some mention of female body parts and reproductive organs so if that isn't for you please stop reading. For everyone else here goes...

For anyone that truly knows me knows that the love I have for children is profound. One of the immediate first questions/concerns I had when I found out I had cancer and would be undergoing chemotherapy was, "Will this affect my chances of being able to have children?" Aside from wanting to remain alive being my #1 concern/objective, I have to say children/fertility was #2 on my list from Day 1.

Because of the nature of my lymphoma there really wasn't time to waste before I needed to start treatment. There also weren't many option discussed as far as fertility preservation. So due to the time constrant my only option was to get a shot of a drug called Lupron. Lupron is a hormone therapy drug that causes the female body to stop making estrogen therefore stopping ovulation. The idea behind getting this before treatment is that it will help protect the ovaries from the harmful effects that chemotherapy can cause. In my case one shot lasts approximately 3-4 months and since my treatment only ended up being slightly more than 4 months I only got one shot.

So I completed my treatment and at my first 3 month check what do think was one of the first things out of my mouth? That's right I was asking when my periods should be returning. My oncologist told that it was very luckily to take up to about 6 months for anything to return to normal. Well I was giving him exactly 6 months. If things weren't progressing by my 6 month check up he was going to hear about it. Lucky for him my cycles returned two weeks before I was scheduled to go see him so I was thrilled about that!

Everything continued pretty much like clock work for another 4-5 months. I honestly could've set a calendar to it. However this is also the time that I started changing everything about my physical person. Changed my diet, changed my physical activity, etc. I had lost a significant amount of weight. After about the 5 month mark things start to go haywire. There were times were I would go for 2 months with no cycle or when I would get a period it would be for weeks (yes I said weeks as in 14-20 days). It got to the point where I told my primary care doctor that I wanted to go see an actual gynecologist.  During this time I also became even more concerned about my fertility so I also convinced her to do hormone testing, which came back normal for someone my age, etc.

All this continued for quite sometime. There were times where I was put on progesterone to stop the bleeding it had been going on for so long. After talking to my GYN it was decided that I would start taking the pill in an effort to help regulate things. So I did.

While all of this was going on I made it a point to keep my oncologist in the loop and voice yet again all of my concerns with what was going on. A lot of it was attributed to the recent weight loss and not so much my treatment.

I stayed on the pill for about 6 months. When my prescription ended in March 2013 I decided I wanted to see what was going on and if this had helped at all. Well since March of 2013 I have not had a single period and no I assure I am not pregnant. This has obviously been quite concerning to me as this irregularity had now been going on for almost 2 years.

So when I went for my 2 1/2 year check up with my oncologist I explained what had been going on, after a very lengthy conversation he said, "Well intially when we started your treatment the likelyhood of RCHOP affecting your fertility was very slim. However having to change your treatment to R-CODOX-M/IVAC which is a more intense treatment could have possibly had some effect." At this point I had to control myself as this has been a topic of conversation since day 1 like I said earlier. We both decided it was in my best interest that I should go to the fertility clinic!! Finally I was hopefully going to get some answers and hopefully some good news!!

I was setup with Dr. Irene Souter who is the director of perimplantation genetic diagnostis program
 with the fertility center. She was absolutely amazing!! Of course the first meeting was like pretty much any other medical meeting, lots of bloodwork and going over the plan. She explained that lots of times with cancer patients their oncologists see the return of periods to mean that fertility was unaffected. However you can have periods return and still have some affect to the ovaries and hormones. I was some what relived to know I wasn't crazy!! We did all the bloodwork before we left the office and the ultrasound was scheduled for a few days later.

In fact I had the pleasure of doing an olympic triathlon and then waking up at the crack of dawn to drive into boston on a busy Monday morning to have an ultrasound done. Let me tell you how excited I was about that! I luckily had a friend go with me which was nice support. During the ultrasounds they were amazing at explaining exactly what they saw and what it meant. Oh yea and I forgot to mention that this was an internal ultrasound, that was a fun first time experience. There were a few things to note, 1.) There was a simple cyst on my right ovary which are apparently quite common, usually come and go and are certainly not cancerous. 2.) My left ovary was very difficult to view so they made a note that it was smaller then it should have been. 3.) The lining of my uterus was still quite thin which meant that even though I hadn't had a period since March there didn't appear to be one coming in the near furture either. I left there feeling concerned about the cyst and the small left ovary.

Fast forward SIX WEEKS later (yes I did have to wait 6 weeks). I finally get to meet with Dr. Souter. The good news is that all of bloodtests including genetic testing and hormone testing came back good. The hormones were slightly off but nothing that can't be helped and I am certainly not in early menopause which was my biggest fear! However Dr. Souter did say the size of my left ovary was abnormal and that she believes based on the ultrasound and bloodwork that my chemotherapy treatment did have an affect on my ovaries. But that she also thinks with some fertility treatment I will still be able to have my own children! That was a huge relief for me!

Then she told me about what was next. I needed to have more bloodwork and what they call and HSG (hysterosalpingogram) which is basically a live x-ray of your uterus and ovaries where they inject some dye to watch the picture and make sure everything looks the way it should, there are no blockages and the fallopian tubes are working the way they are supposed to. This one scared me a little!

To prepare for this I had to go in the day before and get bloodwork done to make sure I wasn't pregnant. I also had to have another internal ultrasound. Luckily this showed that the simple cyst was gone, however my left ovary couldn't be seen. That night I had to take an antibiotic because the HSG is considered to be invasive and they use that to prevent any possible infections. While at home there were two things going through me head. First being, aside from my oncologist who has never seen any part of my body other than what isn't covered by clothing, I have never had a male doctor so I was hoping the Radiologist was not a man. and second I never thought I would be having the conversation with my husband about how the situation was down there. Did I need to shave or something of that nature.

Now on the day of the HSG I arrive in Radiology ready to do this. I get changed and then they take me down. They go over the procedure, how it will work and all the potential side effects. I sat there calm as could be as they told me they were going to be inserting a small catheter through the cervix into the uterus so the dye could be injected for the x-ray. All without any kind of pain medication, now doesn't that sound fun? So as if I wasn't nervous enough in comes the doctor who I am sure you guessed by now was a man. I was just about mortified. However I kept my cool and just told myself, "well it needs to happen and the likelihood of ever seeing this person again was slim so just deal with it." They have me lay on the table with my legs in the lovely knee stirrups 100% spread eagle for a long time. Finaly everything is ready to go and they start. They sterilize everything and insert the speculum. Then comes the fun part the catheter. He tells he is going to insert that and proceeds, surprisingly enough it wasn't as bad as I imagined slight discomfort but nothing over bearing. Then they have to slide you down the table to be the right position for the x-ray. Well while this was going on you will never guess what happened. The catheter came out. So I got to start the process all over again.

Same thing new sterile dressing, new catheter, everything. This time when he was done he had to hold my legs while they slid me down so I didn't engage any abdominal muscles which would make the catheter come out again. This slide was a success! They started the live x-ray and injecting the dye. That was more painful but I think it was due to the speed at which the dye was being injected. About 5 minutes in he left the room and came back with another doctor. Explaining the image he was seeing was a little unusual. That comment made me nervous. You also guessed correctly if you said this second doctor was also a man. They continued to inject to dye but by doing that caused some hardcore cramping/spamism and again the catheter came out.

So this is now the third time we are doing this. Now I get the pleasure of not only doing it again but with an entirely different male doctor poking and prodding down there, FANTASTIC! after I was all set up again and had been slid back down the table they again started taking pictures. He injected the dye much slower so there really was no pain/discomfort which was a relief. When all this was said and done he told me it appeared both my fallopian tubes were open and that there didn't seem to be any abnormalities. That was very good news and I suppose worth all the anguish I went through. A normal 15-30 minute event took me an hour and half! At least I got many praises of being an excellent patient during the whole thing!

That is where I am at right now in my adventure to find the fruitful lands. I decided to write about this in hopes it will some day help someone else who finds their fertility has been affected by chemo. I am currently waiting for my follow-up appointment to go over all the results and see what the next steps are. I assure that my later posts will not be this long. I welcome any comments, questions or just general support that anyone would like to share.

My one thing to leave you with is when faced with something that could affect your fertility or sexual healthy be your own advocate, ask questions and push for what you want! :)

Sunday, August 25, 2013

Mountains vs. Molehills

I have been trying to do things that are adventurous that I haven't tried before. This weekend after talking to my friend Jamison we decided to go rock climbing!! I was scared and excited all at the same time, mainly because we were going bouldering which meant we were doing it without ropes.

We went to Central Rock Gym in Worcester. Basically right up the street from my house! I can't tell you how many times I have driven by this place and NEVER been inside.

We walk in and I of course had to fill out a waiver; you know in case I die. We had to rent shoes too, I started with my normal shoe size 11 and had to go up a half size. Jamison and I wore the same size shoe. That either says something about me or something about him. This is the what the rock walls look like from up where the cardio equipment is...

To the right of the giant wall in the middle is the smaller wall where you do the bouldering. All the climbing trails are labeled starting at V0 going up to V10. 0 being the easiest and 10 being the most difficult. I was only able to successfully complete a V0, I attempted V1, V2 but only got about 1/2 to 3/4 of the way up.

Here it the thing I understand that most of year strength comes from your legs. I wasn't really using upper body strength in the sense of pulling myself up or anything. What I was having a problem with was that you have to have a descent grip for the hand holds. I now understand just how much of a workout this is for your forearms! Imagine making a fist and then hold it like that for an hour. As soon as you make the fist you can feel your forearm tense up. While I was climbing my feet hurt slightly but that was more because the foot holds were awkwardly shaped and digging into my feet not due to over use of those muscles. My legs were completely fine. I guess all that biking & running has certainly paid off. By about halfway through the time we spent there my hands and arms were aching.

I watched others climbing all around me and let me tell you they were very impressive. There were several people who would be hanging by their hands, swing their feet to a tiny little foot hold, and then jump to another spot on the wall. I was in awe most of the time watching everyone. For most of them these walls were Molehills but for me they are mountains. I am determined to conquer these mountains!
I will definitely be trying this again and doing some workouts to help strengthen my forearms. It really was a great workout and it is so much fun when you finally get to the top!
Thanks Jamison for coming with me and not making me feel bad for not being able to do it as well as you! I appreciate the support! :)


Saturday, August 24, 2013

I'm Too Sexy For My Hair!



Today reminded me of a very unique and fantastic experience which ironically enough has to do with my hair. I have a fantastic salon; Scizzors in Shrewsbury MA. I have been going there for seven years. I originally found out about them because I worked for Worcester Foothills Theatre Co. and they took care of all the hair needs for our actors/actresses that were in our shows.

I will never forget my first experience going there. You walk in the door and you are greeted with smiles and this overwhelming feeling of warmth. They really are focused on pampering, they take your coat, offer you something to drink (which also includes beer or wine, not just water or coffee). Once you are all set someone comes and brings your over for your shampoo. I have to say that this is one of my favorite things about Scizzors. All the employees are willing to help everyone out. Often it is a different employee washing your hair than your regular stylist. This is great because you get to know more of the staff.

But my absolute favorite thing about the whole experience is their infamous scalp massage. I swear most people would go sooner than they have to just to get that done. As soon as they start you just melt. Then they shampoo/condition your hair and set you up at your station. I have had multiple stylists over the years but they have all been great. Always listened to what I wanted or helped guide me through my hair woes. I would definitely say they have made me a long time customer for good reason.

Aside from their normal customer treatment I also have a very unique story that Scizzors is a huge part of. I am currently a 3 year lymphoma survivor. I was first diagnosed in August 2010. One of the first things my oncologist explained to me was that I was going to lose my hair. This is what I looked like right before my diagnosis...


Notice that my hair was fairly long and STRAIGHT. After my diagnosis and deciding on my treatment options I had my first round of chemo. I decided there was no way I was going to be able to handle my hair falling out if I left it the way it was. I called and made an appointment with Rebecca; my stylist; to have it all cut off. That was exactly three years ago today, August 24th, 2010!

It wasn't until I got there that I told them why I was cutting off my hair. They were 100% supportive about the whole thing. Rebecca even said, "Well even though it's going to fall out I'm going to make you look great until it does." She helped with another huge thing I wanted to do which was donate my hair to locks of love. I figured if it is getting cut off and going to fall out anyway it should go towards a worthy cause. They took care of it all and she was right I left there looking amazing even though it was a huge difference!



I was going through treatment for some time after that and once I stopped it took a very long time (in my world anyway) to even get a little bit of hair back.

This was about 2 months after my last treatment.

It was close to a year before I was back at Scizzors. I was unsure of what to do with my hair at this point. It was real short, fuzzy, wavy, just plain odd. I actually emailed them to find out if they would be willing to do a consult with me just because I had no idea what to do with this new hair of mine but it was still too short to really cut. I was welcomed with open arms. John who is the owner of salon emailed me back and offered for me to come in before they opened or after they closed if I wanted privacy. He explained that they helped other people who had been through chemo so they knew what to expect. I actually went in to see them the very same day. He explained that my hair was two textures and that the soft baby like hair would have to be cut off. Then it would start to grow more and be easier to manage.

That was the beginning of my new hair journey. John and everyone else at Scizzors has been with me every step of the way since. That was 2 years ago and today I am finally at a place where I am ok; maybe even happy with the way my hair is now. It is just about to the length it was before treatment only now it is really CURLY!!! The curl has grown on me, for at least a year and half I hated that it was curly and hoped it would return to the way it was.

John has always been nothing but supportive, informative, and encouraging reminding every time I have come in, "look it's gotten longer!" And "I know you don't even have to say it we're just trimming it." My favorite thing was that John told me the back of your hair grows faster than the top so he always made sure I didn’t develop a mullet. That would have been bad all around! He also knows to blow dry my hair straight, and a great job he does every time including my last visit to Scizzors.


There will be a time soon where I will be ok with or need to do something different to my hair and you better believe it will all be done at Scizzors! I couldn't recommend them any higher than I already do. Take my word for it you will love everything about it! There is good reason they have been in business for 29 years!

But that brings me to the most exciting announcement. My friend Sara and I have joined Team In Training through the Leukemia and Lymphoma Society. We will be running the Tufts 10K on Columbus Day but we also need to raise money to do so. John and Scizzors has offered to work with us by having a fundraising event! We are planning it for sometime in September but the idea will a glamor night! Come to the salon, get your hair done, make up done, have some food & drink, partake in some fantastic raffles and help us raise money to hopefully get one step closer to curing blood cancer!! 

As an added bonus if we reach our goal that night I am going to shave my head and donate all my hair yet again! But this time it is my choice to loose all me hair!! So be sure to stay tuned for all the details on when and how to get tickets. In the mean time feel free to share this blog post or my Team In Training page.