Life After Cancer: When Lungs Suck At Being Lungs

You know that feeling that occurs when you just sprinted for 200 yards?  Imagine feeling like that after going up a flight of stairs, or doing simple everyday chores such as laundry or dusting.  That is my world.  Some days are better than others and I am able to easily bound up the stairs to my apartment with ease.  However, most days I feel like I have fifty-pound weights on my ankles and a book bag on my back filled with bricks that leaves me winded before evening reaching the top of the stairs. 

Now imagine trying to actually work out when just the simplest daily activities feel like a workout all on their own. 

I feel my persistence in exercising in some form has allowed me to be where I am today.  Living with a progressive disease involving my heart and lungs that has not progressed much more than when I was initially diagnosed is amazing and rather confounding.  As to why my disease has not progressed a great deal is unknown.  The doctors like to believe it is because of the medication.  I like to believe it is because I actually like working out and try not to let the difficulty in breathing stop me from being active.  I enjoy going on walks, even though my stride may be shorter than typical, and I prefer to use the stairs when possible instead of the elevator, mostly because elevators freak me out but it is also great exercise.  Another contributing factor is that I really love Zumba, although I have a really hard time doing all the moves and mostly make up my own and making it through an entire workout without having to stop and catch my breath is tricky.  Yet, none of that stops me from making a fool out of myself every now and then.  That type of activity just has to be saved for those “good days”.

Another favorite activity for me is Yoga.  The nice thing about Yoga is that you get a work out in while learning and working on controlling your breathing.  This is one of the main reasons why Yoga has become my favorite activity.  It is generally something that I can do each day.  Lately though I have been rather lax about my routine.  Mostly because I am just getting over an infection regarding my lungs, which has just made everything seem even more difficult than previously.  After every illness it always takes several weeks to get back to feeling anywhere close to how I was before and each time I get frustrated from starting over and strengthening my lung capacity once again.  I tend to find myself working out less and being unmotivated to change the time spent moving around because after a certain point it is just tiring to even breathe and always feeling like you are out of breath really is not fun.  Now I am currently trying to get back in the habit of exercising each night as I did in the past but I am not finding that motivation needed to start up just yet.

I wish I could say that I just brush off the feelings of frustration for having to start from square one again and face the troubles head on, but admittedly I cannot.  However, it is something that I am learning to live with such faults both physically and mentally.  After all, there really is no other way of dealing with these issues since they are a part of my life and I can either let it bring me down or try to work around and deal with each instance as it comes.  I had a professor in undergraduate school that always told me to look at how far I had came from where I was several years earlier after relapsing.  I try to think of that when I am frustrated by all the set back and sometimes it help while other times it does not.  Sometimes you just have to let that frustration work its way out of your system anyways instead of trying to suppress those feelings.  It is healthier too, right?

What do you do when your lungs suck at being lungs and allow you to breath as needed and supply oxygen to your vital organs?  What ever you can to keep them and yourself going.  

Birthdays Are A Blessing

Some people freak out when they reach a certain age, more specifically for this post I am talking about turning 30.  I always wondered why.  Maybe they break down because they are not at the point in their life or they do not see themselves where they wanted to be when they turn a certain age.  I can not help but be reminded of the Friends episode when Rachael turns 30 and freaks out about it and starts thinking about where she wanted to be by the time she turned 30 and realizes that everything was going by quickly, or when Phoebe realized that she lost a whole year of her life because she thought her birth date was different than what she knew and she had not completed her list of things to do before turning 30.

As I am quickly approaching this age mark, August 29th (today, eek), I am not worried at all, nor do I worry that I am not at the point in my life in which I wanted to be by the time I turned 30.  

I have done a lot with my life before now and I have had a lot happen as well.  The one thing I think of right now is that reaching 30 is a blessing.

At the age of 19 I was diagnosed with Acute Myeloid Leukemia (AML) and during treatment I almost died multiple times.  It was scary and all I could think was that I was too young for this and there is so much more I want and need to do in and with my life.  My other thought was that I could not leave my family like this.  So, I fought hard every day and night.  I made it through several more difficult times and was in remission.

Slowly, I started getting my life together and was enjoying it once more and appreciating all of those small things that mostly go unnoticed.  I decided to travel abroad and as much as I could, carpe diem, so to speak.

However, after signing up and making my deposit to travel to Morocco to ride camels in the Sahara Dessert and explore the world, I found out that my leukemia relapsed.

I was angry.  Mostly because I knew that the relapse meant more intense chemo and a bone marrow transplant, which were still rather new at that time.  Also, I knew that finding a marrow match was extremely difficult because of all the markers they had to match for it to be successful.  At this point I was unaware of stem cell transplants and how they worked, etc.  What I knew was that the fight was going to be longer and more difficult than the previous.

This round of treatment was even more dangerous because every cell has to be killed, all the good and the bad, more so than with my first instance.  I needed full body radiation to help kill all the marrow in my bones so that the new marrow, or in my case stem cells, could be injected to create a whole new marrow production, so new that it can and will change your blood type to which ever donor’s cell blood type happened to be.

This was dangerous and scary because without platelets there is no way to stop the bleeding if it were to happen, which did happen the first time going through treatment and was one reason I almost died that first time.  Also, without and immune system there is no way to fight off an infection, which also almost killed me the first time around as well.  But this time was even more intense and dangerous since I would have even less of an immune system, even less platelets, less blood cells.

I made it through the second time after fighting death several more times and being diagnosed with severe osteoporosis and a very rare, and when I say rare I mean rare, as in at that time only 5 people in the world having the same diagnosis/disease.  Pulmonary Veno-Occlusive Disease (PVOD), which does not have a very cheery prognosis.  Most of the people diagnosed with PVOD, or rather all since it was such a small number, only lived up to 5 years after diagnosis.  This disease, if you could not tell by the name, affects the heart and lungs and makes the heart work harder to pump blood through a person’s body and reduce the amount of oxygen received in lunges and other organs.  It is progressive disease causing harm to organs over the years, which is why survival rate is low.

Considering all I have been through medically, and everything I have done since, graduating with an undergraduate degree in Psychology and Human Services and receiving a minor in French, as well as studying abroad in both France and Morocco, also visiting Canada a few times and London, and traveling within the U.S. to Seattle, Florida, New York, Illinois, Nebraska, and all the states between Minnesota and Florida on an awesome road trip with 2 amazing friends to vacation on the ocean for 2 weeks; I really cannot complain about where I am in my life.

Thus, I feel achieved and hope that on my 30^th birthday in a few days I will not freak out about my age.  I am sure that it will be like any other day and I will mostly be happy for just being alive 8 years after being diagnosed with a progressive disease that has only a 5-year life expectancy after diagnosis.

All this feels like reason enough to not be worried about turning 30, but I guess I will not know until the day comes.  I guess no one does, which is why they tend to freak on their day of birth.

Books, How I Love Thee

I know I have not written lately.  I apologize.  It is not that I have not had anything to write about but more so that I have been so wrapped up in reading that when I have a free moment I have tended to pick up my book or Kindle rather than the computer and get lost in a whole different world.

Reading has always been one of my favorite past times.  One can never be bored while surrounded by books.  Also, I do not believe that you can ever spend too much time reading or have too many books, my husband may think otherwise after moving all my books into our new place.  I guess that is the unfortunate part of having a wife that can only lift up to 20 pounds; he has to do all the heavy lifting.

Reading was something that I used to escape from the world I lived in while stuck in a hospital room.  It allowed me to travel worlds previously unknown to me.

What better way to pass the time than to solve murder mysteries with Alex Cross (James Patterson) with each one of his page turning thrillers that grab you and keep you on your toes to the very last page while continuing to be completely wrong about who committed the crime.  Then learning about the life of young Fatima Mernissi (Dreams of Trespass: Tales of A Harem Girlhood) while growing up in a harem and dreaming of the world beyond the courtyard walls, which related to me wanting to know the world and the happenings outside my own walls.  Then adventuring On the Road with Jack Kerouac and Neal Cassady through North America in addition to feeling as if I were infinite with Charlie, Sam and Patrick while driving through the tunnel in Perks of Being A Wallflower.

I may not have always remembered what I read further down the road while going through treatments for my leukemia, but for those moments while I was reading I was able to explore different places and escape the confining walls of my hospital room and the hospital itself.  Not only that, but in those relaxing times and for brief moments here and there I was able to forget about everything else that was going on around me.

 Lately I have been spending extra time reading and rereading some of the books I read in the past and really enjoyed.  Something that I have noticed is that books are being turned into movies left and right.  While I truly enjoy the watching these movies (The Hunger Games and Catching Fire, all of the Harry Potter films, and now the Divergent series, and The Mortal Instruments, and one of my favorite authors from the past couple years, John Green with his beautifully written novel, The Fault in Our Stars soon coming to theaters).  I cannot help but wonder if this is promoting reading of the books in anticipation of the films or if it is stopping people from picking up the book and spending time to read.

I have heard it both ways with some saying that they do not need to spend hours and/or days reading a book when they can spend just a couple hours watching the movie.  Others want to read the book first before seeing the film.  Those who have read the book before any notion of a movie feel conflicted that the movie will ruin their love of the book. Others, like me, try to keep them separate while watching and rating the movies but still tend to rate them together when suggesting whether someone should watch the film and/or read the book.

An example is Jodi Picoult's novel "My Sister's Keeper".  As usual Ms. Piccoult's writing is wonderful.  It tugs at your heartstrings and deals with controversial issues.  The movie adaptation is wonderful as well, but is very different from the book.  Not only does it leave out very important parts of the book but it also has a very different ending.  Thus, in my opinion, if you are going to watch the movie then you should also read the book because it will be a different experience than the movie.  Another big example is the Game of Thrones series on HBO.  Many people who watch the show do not read the books, which is a shame since there is a lot of things that are left out of the books.  It would be really hard for all the extra information to be put into that short series for each season/book.  The show really is great, but in my opinion are even better after reading the books.  

How do you feel?  Would you rather watch the movie or television series than read a book? Or, are you one who likes to do both?

Life After Cancer: Difficult Disease With A Difficult Doctor

When you are diagnosed with a difficult disease the last thing you want to have to deal with is a difficult doctor.

I currently have a doctor who is a cardiologist and is the worse doctor I have ever had, and that is really saying something since I have had many doctors, some that I did not like but did their job well. However, this one I do not like and does not do her job well, at least in my case. Yet, she is still my doctor. Why?

Upon many requests for another doctor, she remains to be my cardiologist.

The last time I was there for my follow-up visit and requested another doctor I got the same story, she is the only one who is qualified. Except this time after asking about getting a different cardiologist the intern studying under her decided to voice that it made her uncomfortable and that it felt awkward being asked this. As if it was not uncomfortable for me and awkward asking for a new doctor because I could not stand going to my appointments with her. She also responded with the fact that I only have to see her twice a year. I do not think that should matter. If my doctor is not providing the best care, or what I feel is the best care, should I not express that concern?

Do I not deserve to have a doctor that cares about my case enough to remember my history rather than telling me each time how important it is that I not become pregnant because it would be too dangerous for me, thus having me explain for the umpteenth time that I have already been through menopause due to complications from chemotherapy? More than that, do I not deserve a doctor that respects my time as I do theirs so that I do not spend 4-8 hours just sitting in a clinic waiting room unable to go anywhere because no one knows when she might get to my appointment?

I understand that things happen that make doctors run behind on their appointments, but I do not think that it is alright to make your patients waste their time sitting in a waiting room waiting for you to get to their appointment if it is going to be multiple hours. Update them so that they can do something with that time, such as finding something to eat. The worst part about waiting all those hours is that I maybe spend 20 minutes with the doctor before leaving. Yikes, that is a terrible ratio!

Why has it been so difficult to find a new cardiologist?

Complications from my stem cell transplant left me with a very rare and progressive heart and lung disease. At the time of my diagnosis there were only 5 people in the world who shared the disease, Pulmonary Veno-Occlusive Disease. It is a form of hypertension and is the occlusion or narrowing of the pulmonary veins and venules, similar to Pulmonary Arterial Hypertension. Due to the narrow, oxygenated blood is unable to circulate at a regular pace and can leave a person short of breath with the simplest amount of physical activity. Because of the pathology and lack of response to PAH therapy it gets its own classification. The prognosis for PVOD is not something that people like to hear. For most, the disease progresses very fast and patients are reported dying within 2 years of diagnosis.

I have been living with it for more than 2 years now and for the time being, or at least the last time I was able to see my doctor, the disease has not progressed a great deal. This has not been reported in other patients with the same diagnosis. What can I say, I am truly one of a kind. :)

Since the disease has so many unknowns, I have been a human guinea pig since being diagnosed.

This makes finding a new doctor even more difficult. Because the disease is so rare there are not a lot of doctors who know anything about it or how to deal with everything involved. But this doctor is so arrogant that she does not believe there to be anyone else available that can follow my case in any sort of way.

However, she is not doing a very good job of following my case either. Along with the large amounts of wasted time, she is also incredibly difficult to get a hold of. I am still waiting to get an appointment with her for my 6 month follow up visit; it has been 5 month since that visit was suppose to happen.

Why not make more waves? Demand a new doctor? Complain about the lack of response to phone calls. Don’t I deserve more? I know I deserve quality care, and I do not believe that I am getting that care. 

I had a nurse during my transplant that was so rude that I refused to let her back into my room and talked to the nurse manager that night about it, and actions were taken right away to ensure that she not be my nurse in the future. It takes a lot for me to request for someone to not come into contact with me, if that gives you any idea of how rude she was. However, replacing a doctor is not so easy, at least not in this case.

So how do I go about finding a new doctor? Even more, how do I find one that I can afford to visit. The other hard part about my current cardiologist is that she is several hours away, and now after moving even further from Minneapolis it is a longer distance. The costs of driving there, paying for parking, and eating meals adds up, especially since she is not the only doctor I have to visit down there and they can never coordinate the schedule so that the appointments line up.

There has got to be a way for long distance care, right? All the tests can be done closer to home and results sent to “the expert”, especially since the time spent with the cardiologist, or any of the others in her group, is very short and not worth the cost. If I felt like I was actually receiving care, then I might be more inclined to feel better about the situation However, upon leaving I know nothing more than I did before the appointment.

Have I been too nice? Not demanding enough? I try to be polite and respectful when asking about a new doctor, maybe I should be more demanding and less polite. This nice girl attitude has not gotten me anywhere with this group of cardiologists. But how do I advocate for myself, for my health, when I do not feel like I am being heard in the first place? I should not have to be someone I am not in order to have my voice heard.

How do you deal with difficult doctors? How do you make them see you as more than just a patient, but as a person who deserves their full attention? How do you get them to realize that they are not providing their best care even after telling them and asking for a new doctor because they do not seem to have your best interests in mind?

I guess it is time to roar a little bit louder.