Life After Cancer: Research Studies And The Debate To Take Part Or Not

I realize the importance of research studies in the medical field and I am a big supporter of them.  During my treatment for leukemia I participated in a lot of them.  However, I have recently received a letter asking for my participation in another one and I keep going back and forth on what to do.

What is the study about?

The University of Minnesota in the Twin Cities, in cooperation with City of Hope in California, is conducting a two-year study for cancer survivors who received radiation therapy to the chest to study if the low dose of the study drug reduces the risk for Breast Cancer in those at risk due to radiation therapy.  Studies have found that "young women received radiation that included the chest area have anywhere from 2 times up to 20 to 55-times higher risk of developing breast cancer than the average women"(this information was taken from the packet that was sent to me in the mail).

As a young adult that received total body radiation therapy in preparation for a stem cell transplant after my leukemia relapsed, I am a candidate for this study.  Since I am mainly alive because other people took part in studies such as this, maybe even riskier, I have a hard time not participating since it can benefit many people in the future.

So why am I debating whether to take part or not?  The study is taking place at the University of Minnesota in Minneapolis.  As a current resident of Fargo, ND, that is quite the drive to make, which would need to be done several times throughout a 2 year basis.  The Twin Cities is no stranger to me. For over a 5 year time span I, along with my mom for the most part and on occasion my step-father or aunt, made hundreds of trips into the big city.  When I was first diagnosed with cancer I lived in a small town, Glenwood, MN, that most people only knew because of the huge beautiful Lake Minnewaska that spanned between two towns, Glenwood and Starbuck and the big summer event Wateramma.  This is about 2 hours away from Minneapolis (on a good day's drive).  For treatments and whenever there were complications while I was home, which seemed to happen frequently, Mom and I had to make this trip together, sometimes in separate vehicles with me in an ambulance and her trailing behind.  So we both grew well aware of the cost of having to go down and back, which was usually around $100 - $150, give or take some, because of the cots of gas, parking, and food.

Now I live even further away and even though my husband and I have pretty good jobs, we still have a lot of debt, especially student loans that eat up much of our income.  Also, due to current unforeseen circumstances arising, which is a whole new story and ridiculousness on its own, we have been trying to really reign back extra spending, especially since we are both getting really sick of apartment living and are more than ready to find a house to purchase so we can have our own space to do what we want.

However, even after all the mumbo jumbo above, I also had to think about other parts of the study and not just the money side of it.  Ever since my stem cell transplant nine years ago my body has decided that it hates everything.  I wish that was a dramatization but it really is not.  I seem to develop an allergic reaction of various sorts to every drug that I take.  We discovered this not long after the transplant when my body started rejecting one of the big anti-rejection drugs they like to give on top of every antibiotic.  Usually when there was a possible side effect from the drug that should only affect a small number of people, it would happen to me.  I was just that lucky, still am I guess.  I even developed side effects that they were unaware of for some of the medications I received.  The doctors and some nurses often said that I was really good at keeping everyone on their toes.

Thus, I looked through the possible side effects and thought about how they would affect me and make me feel.  Would the side effects cause issues with my work schedule?  Would it take away the days when I actually feel well?  Even though my stem cell transplant was nine years ago I still have lingering side effects from all of the treatment and complications that occurred during this time.  A story for another time.

Any who, after reading the papers a hundred times and thinking through expenses and everything and discussing it with the important people in my life, I decided against taking part in the study.  Was this ultimately the right thing to do?  Who could ever really know that?  However, receiving that study made me more aware that I need to be proactive about my health and make sure I am going to check ups and really watching for those risk factors that chemotherapy and full body radiation bring to the table.  I will have to start overcoming my discomfort of going to the doctor.  I guess I worry every time something seems wrong, other than when I feel like I have a cold or bronchitis, which is common for me, that it will be more than just an infection somewhere making me feel crummy, which is what I thought was going on when I relapsed, or when I feel an ache somewhere, which is like the first time when my hip hurt.  Both of those things started out as small issues that led to such a huge life changing diagnosis.  I know I am not the only cancer survivor  that worries every time something does not seem right and fear that they may hear those dreadful, life altering words again.  It is unfortunate that cancer treatments have such a high likelihood of causing other types of cancers to develop.

However, life continues on and you cannot waste time worrying what might come but instead enjoy the present and take things as they come.  There is no preparing yourself with potentially hearing those words again.  Even if you do they will catch you off guard as if you had never been familiar with those words before.  Of course, that is all easier said than done and sometimes a little bit of worry is important since it will push for you to find out what is really going on.  Not letting that worry take ahold of your life is the important part to remember and a part that I am always working on.

Lotza love!

Life After Cancer: Sick Days

After spending over 800 days in a hospital over a 5 year time period I will do anything in my power to avoid going to the ER or to see a doctor unless I feel that it is absolutely necessary, otherwise I like to stay away from them.  However, this past week I found myself spending way too much time in an ER room. 

One Saturday morning I woke up with a dull yet painful feeling in my chest when I breathed.  Not thinking too much about it I decided to carry on my day as usual even though I would have loved to crawl back under my nice warm covers and return to my peaceful slumber.  But, I made plans to head to the public library with my friend, Sable, which I was really looking forward to exploring some new adventures.  Yet as the day progressed, that dull pain I felt upon each breath increasingly grew.  By the time Sable and I decided that we needed to leave the library before bringing half of its contents home with us that pain was almost impossible to put out of my head.  After discussing the concern with her and my husband I decided that I would head to the walk-in clinic that was just across the street from our apartment.  From there the doctor decided that I should go to the ER since they were not sure what was going on but my blood pressure was sky high and my pulse was rapid.

After taking a few minutes to talk them down from calling an ambulance to take me to the ER and instead allow me to call my husband and have him drive me, I arrived at the ER where they hooked me up to an EKG and heart monitor and started running tests.  One of their main concerns given my medical history was a Pulmonary Embolism (PE), a blood clot that developed and traveled to my lungs.  In order to rule that out they drew blood and ran a d-dimer level, which shows clotting levels and can tell if the blood is clotting appropriately, and sent me for a CT scan with contrast, which they shot through my IV.  Seemed simple enough until the CT contrast blew out my vein with my IV and a majority of the contrast and saline gathered in a very small area on my arm and caused a large amount of pain and swelling.  Then they had to inject an antidote to help break down the contrast since it is usually excreted through the kidneys and the body does not know how to break down the contrast if it is not in the blood system.

After all of that, the only thing they could tell me was that I may be at the very beginning of a virus and if this was the case I just needed to take it easy, rest, and drink plenty of liquids and to come back if I developed a fever, the pain increased, or I was feeling short of breath.  After 4 hours in the ER I was finally released, not really knowing anything more than what I did when the day began, but in a bit more pain because of the CT contrast fiasco.  Little did I know that the fun part had yet commenced.

In addition to having an arm that was twice it’s normal size due to the IV CT contrast, I also broke out in a full body rash.  It seems that the more I am exposed to something, such as CT contrast or antibiotics, my body decides that it no longer wants to be a fan of that particular substance and rejects it by developing an allergy.  Apparently even my immune system is tired of being sick.  Every time I get sick I end up breaking out in a full body rash because of whatever medication they need to give me.  So far I have developed an allergy to every antibiotic that I have had to take more than once.  What is not to love about that?  Each day I felt a little more miserable until Tuesday night when the pain got so bad that I was unable to breath and my fever was not lowering after Tylenol.

Another trip to the ER!  Their concern was the same as Saturday, they were worried about blood clots so they wanted to run the same tests but did not want to do a CT since I had just had a CT recently and reacted badly to the contrast.  Thus, they decided to draw blood and get an X-Ray to see if there was any indication to send me for a CT.  After receiving the results form my blood tests they were more inclined to send me to CT because my clotting levels were elevated, indicating there could be a chance of a PE.  However, my blood tests also showed an increased creatine levels/kidneys functions, which signals impaired kidney functions and the contrast for the CT could cause further issues in addition to adding to my allergic reaction from the last time.  They decided that it would be better to perform the CT but would give me steroids and Benadryl to help fend off the reaction to the contrast.  In addition to loading me full of Benadryl, steroids, and fluids, they had to do something to help with the unbearable pain that had elevated my blood pressure and pulse once again, and relieved the pain by giving me an anti-inflammatory pain reliever called Toradol, which allowed me to finally breathe without wanting to cry.  This was a major improvement since Saturday.

The ending result was that they believed the membrane around my lungs was infected causing the pain when I inhaled.  This time they sent me home with a prescription for antibiotics and steroids that I was able to have filled at a machine in the ER lobby!  How cool is that!  My least favorite things is having to go to a pharmacy while feeling like a bag of crap.  This neat machine dispenses the prescriptions right there in the ER, eliminating the need to wake up the next day and drive to the pharmacy so I can be on my merry way of feeling like myself again.  Instead I could start on my path to wellness right then and there

Are these neat machines common?  This was my first experience with one and I must say that I am a HUGE fan!

All of this fun stuff started my path to finding a new doctor in my area.  The adventure of establishing a new primary physician and finding a new cardiologist who actually shows that he/she gives a damn about my health has begun. 

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.

My Cancer Story: Finding Out I had Cancer

The question most people ask me is how I found out I had cancer. I have two answers for that; the first time and the second time are two very different stories. But we shall start with the first time and work our way to the second.

It was 2003, I had just graduated from high school and was in my first year of attending a local technical college for graphic design that was close to home so I could save money by living with the parents and keeping my job at the grocery store in my hometown. There were two things I wanted to do with my life and that was art and nursing so my plan was to learn more techniques and processes to build up my art skills and then go to nursing school, which could help pay for my art hobby since it is expensive. That way I could do the two things in life that I really cared about: art and helping people. I was really looking forward to this point in time because it meant meeting new people and creating new friendships. For most young adults it meant getting a life of their own and gaining freedom and independence from their parents.

Everything was going great! I loved my classes and my instructors. I had a group of crazy awesome friends and I was working all the time and always on the run.

Since I was always running it never occurred to me that there might be a reason to why I was always so exhausted - I contributed it to working almost full-time and being a full-time student - and why I kept getting huge mouth sores when I previously never had them before. This was all an after thought.

It was October, a couple months into my first semester and I had not been feeling too wonderful for a couple days so I had decided to stay home and miss my classes that day, which also happened to be my day off from work, so I spent my day resting and lounging around the house. The next day I was feeling so much better and I had all this energy that I used to catch up on what I missed the day before. I kind of got the feeling that my instructors felt like I had just skipped the day before because of the energy that I had, but that really wasn't the case. I'm a weird person and I don't like skipping class. I mean, I have to pay for that even if I'm not there so why not go?

The next morning when I woke up and stood up out of bed I noticed that there was this slight pain in my hip and upper thigh area. It wasn't too bad at first so I figured I had slept weird and it would go away. As I started getting ready for my day, getting ready for classes and then making sure I had everything with me for work after class, the pain gradually increased. At this point it still wasn't too bad so I hoped in my car and drove to school. Once I arrived at school I noticed the pain to be elevated even more but what does one do with this type of pain? I went to my first set of classes and during our little lunch break that we got I was telling some of my friends about the pain because we had to go up and down stairs to get from our classrooms to the cafeteria area and I was having a really hard time because my leg hurt so much. They kept telling me that I should go to the school nurse and see what it could be, but my logic was that there wasn't anything she could do anyways so it would be a waste of time, so I didn't go. I sat through another class and then made my way out to my car in the parking lot. My leg was so much worse but all I kept thinking was that I just have to make it through my work shift.

I felt like the walk to my car took hours and I was only parked three rows away from the door! However, that was nothing compared to the walk into work. By the time I pulled up to work my leg was even worse and I just couldn't figure out why. I could barely get it out of the car. Looking back I can't help but wonder why on earth I even went in. But I really hated calling in sick, yet it would have been the better because it took me 30 minutes to get from my car to the break room. Good thing I got there early! I should have taken the remarks that people said to me a little more seriously as I walked in. Apparently I looked like crap, which worked since I felt like it at that time and I could barely walk. I figured that I would be fine because I started work during a not so busy time.

I made it about an hour before I had to find the manager and I was almost in tears because I was in so much pain. With watery eyes I walked up, stood beside her as she worked on something at the counter, and asked if I could go home. Once I asked that she looked at me because I had never asked to go home from work before and had only called in sick a couple of times, so she knew something was up and upon looking at me knew that I needed to go home. It took me an hour and a half to get to my car and another 10 minutes to get into it because it just hurt to move my leg in any way. Through the sobs and gritting of teeth I grabbed my leg lifted it into my car and drove home, which I more than likely should not have been driving since; A) I couldn't stop crying, and B) I was using the leg that was in all this pain!

Once I got home it took me forever to walk from my car into the house and of course my house had a bunch of stairs that no matter which door you used there was a flight of stairs in front of it, which at that point in time was my nightmare. I had to sit on my butt and keep my right leg straight and just my left leg to push me up each step. Once I got inside I sat down in the big comfy recliner and waited for my mom to get home, because I was a mess and I did not know what to do. What I did know was that I was in so much pain, SOOOO much pain. Anyone who has been in pain and has seen a doctor for it knows about those pain scale rating charts so you can rate your pain from 0-10, with zero being nothing and 10 being the worse pain you have ever had. This chart meant squat. There was no way to rate this kind of pain anymore.

Once my mom got home and noticed my car out front and that I was not at work she came inside, saw me in the living room draped across this huge chair and asked me why I wasn't at work while she put her stuff down. After not answering her and her then hearing my sobs, she asked me what was wrong. Somehow I managed to stop gritting my teeth enough to tell her about my leg and the pain. Since she was thinking it could have been a pinched nerve based on my description we slowly and painfully made our way to a chiropractor, which didn't help. After that to the emergency room where this big bulky male nurse had to pick me up out of the car to bring me inside because there was no way I was getting out again.

After this point there are a lot of things that I don't quite remember. What I do remember is that they would not give me anything for the pain until they drew blood and did a CT Scan. I remember laying on those uncomfortable ER beds staring at the pattern on the draw curtain trying to focus on something other than pain. At the same time I was so scared because I had no idea what was going on or what would cause this sort of pain in such a weird area. Then the morphine kicked in and I kind of drifted in and out waiting for the doctors to tell us something. Once the doctors had some results they took my mom out of the room and she already looked so worried to begin with. Then she came back into the room and I could tell she was crying but I didn't know why. I had no idea what was going on for the longest time. It was only after admitting me to the hospital and arranging for a transfer to Minneapolis when a consulting physician came into my room and examined my skin, asked me a couple of questions, and then told me that they suspected that I had some form of leukemia and they were going to send to Minneapolis for more testing and opinions from more experienced doctors in blood related cancers. When she was examining my skin she was looking for bruises and petechiae (tiny, pin sized red spots caused by broken capillary blood vessels that occur because of a low platelet count). I had thought the bruises were from work and I had never noticed the tiny dots. One of the questions that she had asked was about mouth sores because those can be a symptom as well. Now I knew why I kept getting these annoying sores in my mouth.

I am an optimist so I would have never put all of the symptoms together and think there was something wrong. I am more like one of those people who would use any excuse to avoid having to see a doctor. I wasn't and still am not a big fan of doctors and this experience did not help change how I felt about them. Mostly it increased my dislike for them, but that is a story for another time.

After being admitted to Fairview Medical Center in Minneapolis, the diagnosis was confirmed and the kind of cancer, as well as the type and subtype were all explained to me. Acute Myelogenous Leukemia (AML), which at the time was more dominant in old people/over the age of 60 or so. However, all I really heard was leukemia and cancer with a bunch of mumbo jumbo. Lets be honest, those words are terrifying at any age, but I just turned 19 not long before all of this and I barely knew anyone with cancer except for one person from my high school class. I was terrified but I was also mesmerized by this female Irish fellow doctor with this beautiful accent and gorgeous blue eyes. I could never seem to listen to what she was saying - I love accents, who doesn't? Instead I just listened to how she said things. Probably not the best idea, but I am sure I am not the only one who has had this happen to them. Thank goodness Mom was there to listen and then fill me in afterward. Plus, I was super drugged up so I would not have been paying attention to the meaning behind what she was saying. Lets be real here.

To be continued...

Lotza love!