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: 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.

Showing Emotion and Asking for Help: Why is it So Hard?

Why is it so hard for people to ask others for help when they need it? We try to tell ourselves that we are fine and that everything will be ok and things will pass even when we are not sure if that is true.

There were times during my cancer treatment when I knew that I needed someone to talk to and listen to what scared me. I needed someone who would not tell me that things would be fine and that I was strong and would push through everything. I needed someone who would allow me to be scared rather than tell me that I just needed to be strong and think positively. But I was unwilling to admit that I needed that help. It probably would have been beneficial for me to seek someone like a counselor to talk to, but for some reason I just could not accept that I needed that type of help.

Maybe it was because, as a cancer patient, I was already being looked at differently by all my friends and family members that I felt like I did not need one more person to give me that cancer patient look.

If we know we are in a state of depression, or just not feeling like ourselves, why are we afraid to acknowledge that feeling? Why are we more willing to let ourselves feel crummy instead of wanting to do something about our mood so that we feel more like ourselves than different and foreign?

Why is it so hard to ask for help when it is needed, especially when it revolves around mental health? What is wrong with showing fear? Uncertainty? Sadness? Anger? All those emotions that wash over people at any point in their life can intensify once they are exposed to the world revolved around treating cancer.

The person with cancer often gets overlooked and the main questions end up being asked about how the treatment and procedures are going rather than how you, as a person, are handling everything emotionally and mentally.

People tend to push for you to stay positive all the time, to keep your chin high, enforce the fact that you are strong and can get through this difficult time. As long as you stay positive you will make it through everything.

Why can I not scream out in anger when my body reacts to a drug and makes me itch like mad? Why is it wrong for me to be angry that my life has been interrupted by something that could kill me and prevent me from doing all the things that I grew up wanting to accomplish? Is it really normal for someone to be positive at every moment even after all the side effects from the chemotherapy and various drugs that accompanied the cocktail has made the body feel foreign to the owner?

Everything revolves around cancer, tests, treatments, procedures, etc. rather than the actual person.

It took me a long time to realize that it is OK to cry. That it does not make you less of a person for feeling some sort of emotion and allowing that to show on your face.

Life in general is not easy, it is not suppose to be, otherwise we would always get what we wanted and nothing would make us really work for those extra things we want and enjoy in life, right?  Also, it would probably be a little boring and I do not like boring. Instead I enjoy challenges and face them with as much strength and determination I posses. However, I never wanted something as challenging as cancer, nor would I have ever expected it to happen.

Maybe sometimes boring is good.

Growing up I was not one to cry in front of others. When I got upset and felt the urge of tears wanting to show my true feelings I would run away to be alone, secluding myself to deal with my feelings myself, rather than expressing them out loud. I thought that crying would make me look like a baby or a wimp and I was always trying to be a grown up and strong like my mom.

Since I only saw my mom cry on rare occasions, such as when we lost a beloved mare while she foaling, or when someone passed away, I assumed that was the only time worth crying. Of course there have been a few times in my 29 years on this planet where I have been super frustrated and stressed past my max where I broke down and did not care who was around me. But most of the time I would just try to take everything in with a positive attitude and let the world know that I was fine with whatever may come.

Yet, once I saw my mom enter my ER suite, and by suite I mean a curtained off area, crying I knew something more than just a pinched nerve was causing all the pain in my leg. But nothing prepared me for what I was to learn in the next 24 hours.

(For more information, please refer back to a previous post, Finding Out I had Cancer)

I knew that in order to live I would need to start chemotherapy right away, per doctor’s orders, so I obviously agreed, as did Mom, and we started right away. Also, I was so doped up that I could have agreed for them to harvest all my organs. Thus, it was a good thing my mom was there to make sure everything went the way it should.

Even after finding out that I had cancer I did not let myself cry. The only time I would cry was when I was in an extreme amount of pain. Maybe part of the reason was because I had no idea what was in store for me, because I also had no idea what leukemia was or how it was treated or anything about chemotherapy. But I did know that I needed to be strong and in various ways. I needed to have the strength of mind and my attitude to know that I could make it through the tough times ahead and not give up even in the rough periods. 

However, after several months in and out of the hospital, various complications from the drugs, zero energy and not being able to spend time with family and friends around the holidays made me so mad. During one of my short stays at home between consolidation treatments we had a family gathering with my grandma. This was just after being released from the hospital after a spinal tap, which did not heal right and I was left feeling absolutely miserable and unable to stand or sit up without being sick to my stomach with a pounding headache. I could not enjoy my time with my family at the dining table. Instead I had to remove myself and lay back down on the couch, which really bugged me.

At that point I just let it go and broke down. I was so sick of everything. Never feeling well, never having any energy to do anything, always feeling like I needed someone around me rather than being my independent self and just not knowing what to do with myself physically, emotionally, and mentally.

I felt better after releasing this emotion that I tried so hard to keep inside and away from others. All this energy that I spent to try to keep my emotions in tact just made everything more difficult. It was hard to try to stay positive about the whole situation when I was bottling up so much of everything.

Why did I feel the need to keep everything bottled up? Why could there not have been someone who would come in and visit with me while staying in the hospital to talk or listen to my concerns and feelings? Isn't mental health just as important in the battle as the drugs being given? 

I feel that with every diagnosis and every treatment protocol another step should be added to the process. Finding a professional who can speak with individuals dealing with various situations so that they do not feel so alone, so they can work through their thoughts and emotions and try to get a feeling of control back in their life. Just because someone says that they are dealing with everything fine and seem to be handling things with ease does not mean that they are not falling apart inside. 

Here is a thought for parting. One of the things I noticed when being admitted to the hospital was that they always asked me what religion I was and if I would like a chaplain to visit. Even upon saying no the question would come up again later or a chaplain would eventually stop by my room. Why is a chaplain easy to provide, even when unwanted, but a counselor, therapist, psychologist, etc., is not? 

My Cancer Story: Support Groups and Technology

While I have been writing this blog I have come across some really awesome cancer support groups on the internet, which is wonderful for those who are currently going through cancer treatments as well as those who, like myself, have kicked that bad boy's ass. I cannot help but look back to 2003 and wish that there had been easy ways to find support groups like the ones available today.

The first time I was diagnosed with leukemia I always felt so isolated because not only was it hard to have visitors to make sure that they would not accidentally get me sick but also because I was a couple hours away from my family and friends. Since my friends and I were in our first year of college there was always something going on and life was busy. Thus there was not a whole lot of time to drive down to visit me for a few short minutes, although when my friends and family did visit it always made the day and the next few days easier.

It was not as easy to stay in touch with friends and family like today. Facebook had not been created yet. That one easy spot to go to and talk to all of your friends and family in one easy place did not exist in that time. For those of you who rely on facebook to keep in contact with everyone today or even just to waste some down time when you are bored, think about what it would be like to be stuck in a hospital for weeks at a time without that one simple website... Fortunately facebook came along in 2004 so that by the time I relapsed and was about to spend a longer stent of time in and out of a hospital I had that resource to help keep in touch with others in addition to a Caring Bridge website blog.

The easiest and almost only way to talk to someone who was not able to visit or not around at the time was via the phone in my room. Skype had not been created yet either and you all know that since Google Hangouts is fairly new that it was not an option either.

What about a cell phone? I had one of those monsters back then. However, they were not allowed to be on in the unit and since I was always in the unit I could never have it on. What would you do today if you were not able to have that cell phone by you? You wouldn't be able to play Candy Crush!!!!! What if someone texted you?!?! The horror!

Crazy, huh? Hard to think about?

It was hard to find people that could understand what you were really going through, especially since in 2003 people did not seem to want to talk about their cancer very openly, which made it difficult to know who you could talk to who could really understand. Even for myself, it took me a couple years to be able to feel even slightly comfortable talking about my experience, mostly because a lot of the things that happened were still a little foggy and it took time for all those memories to come back, and still today some of them are still lost, which in the long run may be for the best. That is at least what my mom continues to tell me. I cannot imagine being her and seeing someone go through half the things that occurred over the years after finding out that the sudden and sever hip pain was leukemia. Then to watch as I almost died due to complications many times. In one of the other posts that I am currently working on I talk about how important my mom was and still is throughout everything and how she was the rock and strength through all the difficult times and my main pillar of support.

My doctors and other health care providers recommended that I talk to a therapist about everything but I did not know how that could help. How are they suppose to know how I feel if they have not experienced life with cancer before? Even fellow cancer patients might not understand everything that someone else is going through since even the same cancer and treatment can vary depending on the individual. Also, each person has a different outlook on the events in their life.

The first year after finishing chemo I did not think that I should be able to complain about how hard everything was and still seemed to be because I didn't lose any part of my body or any motor functions like others that have had cancer. Thus, when the time came for me to ask for a wish through an organization for young adults that is similar to the Make a Wish foundation I wasn't sure I deserved it and had a hard time asking my doctors to sign a form stating that I did indeed deserve a wish of my choosing (within reason and within the continental US). However, now I realize that anyone that has to work that hard to survive and deal with all the things that cancer brings to the table, they do indeed deserve to celebrate somehow.

Technology has come a long way over the years since my first diagnosis and those battling this disease now know that it is still no picnic, but maybe it is just a little easier knowing that finding support groups that you can meet fellow cancer survivors and those going through treatments and chat with them through google hangouts or skype and build up an internet support system is available compared to 2003 when those thing did not exist.

Even today I still wonder how people find some of the groups that they talk about. I must not be looking in the right places or using the right keywords.

Life After Cancer: The Impossibility and Yet Possibility of Having Children

Some people grow up knowing that they want to have kids when they get older and others don't think about it, or at the time believe that they do not want kids later in life. I grew up believing that I never wanted kids. I just never really saw myself as a mother. Later on I thought that if I did have kids I would like to adopt at least one of them because there are so many children looking for good homes. But lets face it, I was young and had so many things that I wanted to do before I would even consider having little ones running around. 

You never know how your mind will change throughout your life, so learning that I would never be able to have kids of my own physically at the age of 19 did not cause a great deal of turmoil at that time. In the moment I was more concerned with trying to stay alive than anything else. One of my next posts will talk more about why I can no longer have children but I need to at least briefly explain parts of the reasons with more details later. One of the reasons was during my consolidation therapy I had a major complication and had to be put into early menopause to prevent similar future complications. The second reason was due to total body radiation that I had to go through before I had my stem cell transplant, and the third reason has to do with a rare disease involving my heart and lungs, which I developed from a complication from graph vs. host disease after my stem cell transplant. All of these contribute to me not being able to have children of my own. 

Even though I did not think that I wanted children at that time in my life there was no way to know that at some point I would meet someone with whom I would want to have a family. Knowing that it was already impossible to bear children and constantly having a doctor, one with whom I have to see every six months repeat to me that it would be dangerous for me to get pregnant, makes it even harder now that I would like to have kids. It is frustrating to repeatedly have to tell a doctor that you see regularly that there is no biological way to become pregnant and having to explain why when they should already be aware of that makes the situation more difficult. 

Another tough part is that recently (September) I got married and everyone wants to know when we think we will start having children. I can't blame them, people are curious and a lot of them do not know my history and those that know do not know everything. But it is still hard to repeatedly respond to that question.

Just because it is impossible for me to have children physically it is still possible to have children through adoption. Recently my husband has been talking about wanting a baby and the topic comes up even more when we are with family and their kids or friends who have children as well. 

But it is still hard because there are so many things that you have to consider before starting the process and even more things that are taken into consideration before you can even begin the process of adoption. Instead of just deciding that you are ready to start trying for a baby you have to wait for someone that you do not know to decide that you are ready and financially stable to support a child. That is definitely a job that I would not want to have. To tell someone hey, I know you really want to start a family but not right now, of course in a more professional manner. Oh, that would be hard. 

So, this is what has been on my mind lately and I am sorry that it took such a long time to get this post up but having three jobs all start up at the same time made life super chaotic until I could get use to finally having to wake up at a specific time every morning. :) Oh adulthood, you are not as fun as I thought you were going to be when I was a child. :)  Hopefully I have finally gotten things on track so that posts will be more regular.  

My Cancer Story: Chemotherapy

There was always a feeling of uncertainty.  Uncertainty of what was to come, the things that could happen along the way, the outcome of every new thing that was thrown my way. Nothing can really prepare you for all that can happen after learning that you have cancer. Not only did I never know what to expect but I also had no idea what chemotherapy was. All I knew was that it was used to treat cancer. Chemo and cancer, what a heavy alliteration. Hearing one usually means hearing the other and can change a person's life either temporarily or permanently.

Not knowing anything about chemo meant that I had a lot to learn in a short amount of time. I always thought that chemo was one specific drug, but it actually refers to a cocktail of drugs that doctors feel will be the best combination for killing the cancer cells. Two of the drugs that I was given were Cytarabine (ara-C) and Idarubicin (Idamycin), which are common for AML treatment, or at least at that time.

For my type of cancer, Acute Myelogenous (Myeloid) Leukemia, there were different stages of chemotherapy. The first stage was the Induction Phase. The goal of this stage was to kill all of the leukemia cells from the blood and reduce the number of blast cells, which are immature cells, to a normal range and put the cancer into remission. This was a very intense stage because of the large doses of drugs that were administered. The weeks that followed were equally intense. Since chemo does not just target the bad cells, but instead kills all the cells in your body, including the ones that support your immune system, it is very important to protect yourself against germs. A simple infection, like a virus from someone visiting who may not even know they are sick, can lead to many complications and possible death since the immune system cannot fight off the infections. When people find this part out they tend not to visit to reduce the risk of unknowingly passing on a virus, which tends to lead to a lot of isolation and alone time. Understandable.

Fortunately for me the induction chemo put my cancer into remission. If remission does not occur with the induction phase, more chemo is given until remission is achieved.

So, I got to relax in a hospital room for the month while my blood counts regained strength in numbers with nurses coming in every 4 hours, day and night, to get my vital signs, a lab person coming in every morning around 4am and sometimes during the day to poke me for blood, a flock of doctors, interns, med students, etc. cramming into my room every morning around 7am to see how I was doing and to let me know about all the exciting things the day would contain. It was all very exciting. Plus there was that delightful and delicious hospital food. Just in case you could not make up your mind between the two decisions you had to choose from for each meal, it did not really matter because you had the next week to try the other option. Yup, every week had the same option for each day in that week.

Unfortunately the hospital food was not good, AT ALL. Breakfast was alright, you cannot really screw up cereal, right? I learned early on never to order anything that needed to be cooked if you actually wanted to eat that morning. Eggs always tasted like silly putty/rubber, toast was soggy by the time it made it to my room and pancakes were similar to eating cardboard. The oatmeal was alright once you added a few packets of sugar and luckily there was a kitchenette on the unit floor so that I could get toast, along with several other goodies whenever I wanted. Good thing there were several other restaurants around the area so that I could ask my mom to run down and get me something that was edible, at least when I was feeling up to eating.

Chemotherapy kind of ruins a person's appetite. Even if something actually tasted good, which was rare since chemo also wipes out your taste buds, it is never good coming back up. Medicine has come a long way in helping with the side effects of chemo, especially when it comes to treating the nausea. However, all the Zofran in the world can not keep some people from giving up their lunch. It was the best med that I received for helping reduce the nausea, but it did not always help. Sometimes it just gets bad enough where nothing can help settle the stomach, even if it doesn't have anything in it.

It definitely was not the best of times, but it also would not be the last time of feeling like I was hit by a mac truck. I still had 4 rounds of consolidation therapy ahead of me after I made it through the induction phase.

Consolidation phase is needed to kill the remaining cancer cells. Without this phase the leukemia is likely to return. I will give a brief description of this since there will be even more in the future about everything. This is the follow-up stage. After my counts rose and were back in the normal range I started my first out of four rounds. For a week I would be admitted to the hospital to receive a week of consolidation chemo. Once that week was up I was released and sent home to wait for my counts to drop. If at anytime during this point I developed a fever of 100.5 or above I had to get to the emergency room and back to the cities because the fever meant infection, which was life threatening. I usually wound up back in the hospital after a week of being home. With each round, it took even longer for my counts to rise back up to a range where it was safe enough to start the next round of consolidation chemo and each round was harder and harder to get through. Each round has a story of its' own, a story to be told in future posts. They are not light stories, but then again this is a rather heavy topic.

Lotza love!

My Cancer Story: Bone Marrow Biopsies and Lumbar Punctures

I know I said on my earlier post that the next one would be about chemotherapy, but that is going to be my next one. This one I am going to discuss a bone marrow biopsy and a spinal tap so that when those stories come up in the future you will know more about the process.

Neither one of these procedures are fun and even thinking about them makes me cringe a little bit, but they are important to know about since it is all part of my story.

Before they start the chemo the doctors not only had to do a bone marrow biopsy, which they needed for finding out more information on the type of cancer and how many blast cells were in my system, but they also had to do a spinal tap to make sure that the leukemia was not in my spinal fluid.

What are blast cells? Blasts are the cancer cells and they do not carry any oxygen, which is why I had that severe pain in my leg, because blast cells were gathering in that area making it difficult for the good blood cells to get by and provide oxygen to the area.

One of the worst procedures I had to endure several times throughout the years was a bone marrow biopsy. Imagine a corkscrew being twisted into your hip bone. Did you just wince a little bit at the thought? It is OK, I did too. However, that is basically what a bone marrow biopsy is

A bone marrow biopsy (BMB) is exactly what it sounds like. Usually the bone marrow is collected in the hip bone, but can also be taken from other areas as well. This is not a pleasant procdure, and neither is the spinal tap for that matter. However, if I had to choose one over the other I would totally go for the spinal tap. Soon you will understand a little bit more about why. In order for the doctors to get a biopsy of the bone marrow I had to lay flat on my stomach (because they obtained my biopsy through my hip bone) and the doctor would numb my skin first, as well as the path the needle would pass through. After numbing that area they would tap the hip bone with the same needle to numb it as much as possible in an effort to reduce the pain. When the skin was numb they took another needle that was hallow, which I referred to as the "corkscrew"because this would take a sample of the bone marrow by the doctor putting a lot of pressure down on my hip bone and twisting the needle into the bone in a similar fashion as twisting a corkscrew into the cork of a wine bottle. The doctors are then able to use the sample of the bone within the hallow needle and allows for the next step. Now the hallow needle allows for the doctors to aspirate some of the bone marrow, which is really really painful since there is no way to numb that process. The sharp pain would shoot straight through my body, but fortunately the pain generally subsided after they were finished sucking out some of the liquid. Thank goodness the doctors administered a small dose of medication that helped relax me before beginning this lovely process.

Now onto another delightful procedure, a lumbar puncture, otherwise known as a spinal tap. A spinal tap, in my opinion, is not as painful as a bone marrow biopsy. There are a couple different ways of positioning oneself for this procedure and it usually depends on which position the doctor is more comfortable performing the tap. I tried all of them and there really is not a difference for the patient. For all of them you are basically positioning yourself in the fetus position. Then the skin is numbed and the path that the needle will travel, and the spinal needle (a very long ass needle) is inserted between the lumbar vertebrae and is pushed in until the doctor feels two pops. After the second pop the stylet from the needle is removed, which allows spinal fluid (cerebrospinal fluid - CPS) to drop and be collected into a vial. After this procedure is finished I had to lay on my back for a minimum of 30 minutes so the fluid could build back up and reduce the chance of a spinal headache or migraine occurring, which is one of the side effects. The spinal fluid is checked for leukemia cells, which would require chemo to be administered directly into the spin. Fortunately for me there were no signs of leukemia cells in my spinal fluid.

I also consider myself really lucky that I was out of it for these two procedures the first time. However, I did not know at that time just how many of each I would still have to do in the future. I had a total of 8 bone marrow biopsies and 6 spinal taps done throughout the years. Some of them were better than others, but I had a really really bad experience with both the spinal tap and bone marrow biopsy, which you will of course learn more about in future posts.

Both of these procedures contribute to the next phase. They help the doctors determine what types of drugs they should use for the chemotherapy cocktail and they help stage the cancer and the specific type. All very exciting stuff. :)

Lotza love!

Life After Cancer: Follow-up On Previous Post

One of my readers left a wonderful comment on my last post, which got me to think about things slightly differently.

Life is adventurous, and if I would not have had cancer I would not be where I am today and I wouldn't change that for the world. I have been blessed to be able to do some really awesome things, such as travel to Paris, London, see the beaches of Normandy, and I traveled all over Morocco. These were things I only dreamed of doing all those days I was stuck in a hospital room. Sure enough, after getting better I decided to make them a reality. I cannot honestly say that I would have ever gone overseas (except for Paris since I have wanted to go there since I was in high school) if it was not for cancer.

I guess it is all about how one looks at something. It is better to be optimistic and think of all the different things still available rather than focusing on the few things that are no longer possible. This is something that I have been really trying to focus on whenever I start to get upset or sad about not being able to participate in soccer events or join my mom on a horse ride, or even when I think about my future and not being able to be a nurse. However, sometimes you just need to be able to say that life sucks, as long as you let it only be true for a few moments at a time rather than allowing it to consume you.

I may not be able to be a nurse for a career anymore, but I am able to do something else that involves doing something that I live for everyday, helping other people in need. This I am able to do in a variety of ways, I just have to discover all those different opportunities. This is the adventure I am on now and who knows what path it will bring me down.

Shout out to g Vijayank for the wonderful comment on the last post. I hope you and everyone else continues to read and enjoy my blog.

As always, questions and  comments are always welcome.

Lotza love!

Life After Cancer: Losing A Part of Yourself

I read a blog today that got me thinking even more about something. The blog was about losing a body part to cancer and accepting that fact. It was really interesting. But it got me thinking about a different loss.

What if you lose something that makes you feel like yourself?

What could that be? What would it be for you, the reader?

One of the hardest things I have had to deal with after having cancer was changing a lot of the things that I did before cancer. These are the things that I felt contributed to who I was/am. Now, how is this more important that a body part? For starters, losing a body part and losing a part of what makes you feel like yourself area two different things in my mind. Of course it is terrible losing a leg or a breast to cancer, I am not saying that this is easy and I really wish no one had to worry about losing something, but medicine has come a long way in being able to reconstruct some of the parts that can be lost. The only body part I lost from cancer was my ability to have children because of all the radiation and chemotherapy that I endured, as well as being put into early menopause at the age of 19. I am not exactly sure why this happened, but for some reason the doctors did not think about the consequences of a female not having any platelets in her body to help prevent her from bleeding to death when her monthly cycle comes around. Due to that oversight, and me not knowing that could have ever happened and thus never thought about it, the doctors did everything they could to stop the bleeding and as a preventative measure decided that menopause was a good alternative. I would have to agree, but with menopause comes a bunch of other things that a 19 year old gal should not have to worry about. Luckily for me I was able to do hormone replacement therapy for a while to help with some of the heat and cold flashes. At the time I was not really worried about my prospects of having kids because I never wanted any. However, your mind changes when you get older and then get married. Now I wish I could have children, but even if I was able to still conceive children my body would not be able to handle the stress that comes with being pregnant. So, I am rather glad that I can save that money that would have otherwise been spent buying tampons on something that is so much more fun to buy. However, for all my lady friends that come over I generally keep a box on hand just for you just in case.  ;)

So what was it that I lost that made me feel myself?

There are a few things that I have done since I was really young. Riding horses, hiking, playing soccer, and bike riding. You may think these are weird things to have lost due to cancer but for me these are the things that I love and still love today, I just cannot enjoy them like before.

For those who do not know me and have not read other parts of my blog, I had a stem cell transplant in 2005 for Acute Myelogenous Leukemia. The transplant was a success, but it came with many complications. One of which was an attack from my new immune system on my heart and lungs leaving me with a very rare heart and lung disease called Pulmonary Veno-Occlusive Disease. This means that it is harder for my lungs to fill with oxygen and my heart has to work harder to pump oxygenated blood throughout my body. This makes any physical activity hard because I get short of breath easily. Because of that it is almost impossible for me to play soccer, the only sport I enjoy playing, and it is really hard for me to enjoy biking and hiking. Luckily I can still bike a little bit and hike small, semi flat areas, but I really enjoy long non-flat areas, and the same is with biking. It may be silly to miss these things and you may be thinking, well at least you can bike and hike a little bit, and you are right. But, these are things we did every day and all summer long while I was growing up so it is hard to let go of that (and I am not saying that this is harder than losing a leg or a breast or any other body part, this is just another take on losing something to cancer).  You would think after six years I would be over this and just accept that it is something that I just will not be able to do, but I cannot. I am hoping that at some point in time there will be an advancement in medicine that will make these things possible for me again. Is that too much to ask?

The other thing that I have not been able to do for several years now is ride horse. Apparently, after going through menopause your bone density decreases and makes your bones more brittle so they break easier. However, the amount of time between starting menopause and getting to the point where one's bones are weak enough to break easily was unknown. Thus, no one thought to put me on bone strengtheners to help prevent easy breaks. So, after my childhood horse passed away and I got on a new one who, for some reason, spoked at something unknown, I found out just how strong my bones were not. When my horse spoked and jumped I went about an inch up out of the saddle and when I hit the saddle again I broke my pubic bone, which caused a great deal of pain and caused the horse to spoke some more and I hit the saddle horn and broke another part of my pubic bone and then slide off the back side of her and onto the ground. Once I hit the ground I broke my elbow and another area of my pubic bone. Thus, ever since then no one, meaning my mom, will let me ride horse until my bones are strong enough and even then she is not sure she really wants to chance it. Riding horse was a connection that Mom and I had that I loved. Almost every weekend we would pack up the trailer and go camping and trail riding.

Now every summer when Mom packs up for a weekend or longer of trail riding I get very jealous and sad that I cannot go with her. As if losing my horse was not hard enough, I also lost being able to do my favorite thing in the world.

How do you get over giving up things like these that you spent your life doing before you had cancer? Does that feeling of loss ever go away? Should these things be a part of who I am? Am I crazy for letting them be me?

How would you feel if you were no longer able to do just one of your favorite things?

I may have the rest of my life to find something to fill the voids of these things I can no longer do and I am grateful for that, but I have yet to find anything to fill in the holes, yet. But, I am open to any new adventure that comes my way and thanks to the advancements done by research to treat cancer, I have that luxury at least.

Lotza Love!


  

My Cancer Story: Waking Up to A Surprise

I am not exactly sure on the time frame from when I was listening to that amazing Irish accent to the next thing I remember. I am pretty sure that my pain was being well treated because when I woke up and was clear minded enough to know I was awake and could thus remember a little bit about what was going on. I was slightly confused. Alright, so I was really confused. Upon waking up I noticed some discomfort in my chest on the right side of my body so of course I had to know what that feeling was. Since I would need something that could be accessed regularly for chemotherapy and frequent blood draws, which I was really excited about because I hate needles and having to get poked everyday would really suck!), I had a Hickman catheter inserted into my chest.

What is a Hickman catheter? Well I shall tell you and if you find it hard to understand just google it for a visual image :) A Hickman is a catheter that is inserted into the jugular vein in the neck and goes toward the heart, and then the other end is threaded over the clavicle bone, then exists in the right upper chest area. Mine had two tubes that split from that one catheter but there can also be three tubes. Well, why don't I just see if I can post a picture for you so that you get a better idea of what it is. 

http://s9.beta.photobucket.com/user/taser1984/media/nosmoking/Hickman_catheterMedium.jpg.html

Voila!!

This catheter makes it a little safer to administer the large doses of chemotherapy because chemo is deadly if it leaves your bloodstream. It is a poison after all. 

So that was a pleasant surprise to wake up to, except that someone neglected to tell me that when those lab people come into your room at the wee early hours of the morning, usually when you have finally fallen asleep, they cannot actually use that port to draw blood. Only nurses can do that. So every morning I ended up getting stuck with a needle to get my blood drawn. My excitement for having that nifty little catheter dissipated after learning that harsh reality. I may have been a little bitter because of those needle sticks but in all honesty I usually ended up with a phlebotomist who could never just stick me once. So, I believe I had that right. 

The next thing I knew, this hoard of people in white coats came galavanting into my room. It is my team of doctors, for this rotation anyways. So, I got to be introduced to a whole bunch of medical students and other types and what nots, only so that I could be introduced to a whole new group in a couple of days since I arrived close to the end of the rotation period. There was a new rotation every month, but after so many rotations it would start all over so those from the first cycle came back around.  These people had the nerve to always come into my roam like a herd of elephants just as I was falling back into a wonderful sleep after being stabbed by the phlebotomist, seriously that is what some of them did, they took that needle and stabbed it into my arm, and if they didn't hit a vein they pulled the needle just far enough out so that it did not leave the skin so they could angle that little sucker in another directs to stab it again until they found what they were fishing for. 

Through time these doctors and med students grew on me. Some of them I came to like, some not so much, and others I just could not understand what they were saying.

The downside to being in a place where the doctors constantly change is that I did not feel like I had a doctor that was fully invested even though I was assured that I did. I just felt like I barely ever saw him. But for someone who takes a while to warm up to others it was hard not having the same doctor to discuss stuff with day after day. The upside to the rotation was that if there was a doctor that was not my favorite I knew he or she would be gone within a month anyways :)

My oncologist was quite the character. He kind of reminded me of a cross between Santa and Professor Dumbledore (the original Dumbledore) from the Harry Potter series. He had this really long grey silvery beard that matched the color of his hair, which was always pulled back into a ponytail that reached down to his lower back. Just upon looking at him that first night I was at Fairview I knew this man would be a very interesting and probably a fun doctor to have.

https://www.aamc.org/newsroom/reporter/dec09/87466/a_velomobile_for_two.html

Throughout the years Mom and I got to know this Dr. Hammerschimdt (a.k.a. The Hammer) better. And boy was he interesting, my favorite type of person.

This picture is Dr. Hammerschidt in his velomobile, which he took everywhere. You can see how my vision of him as Santa really was not far off. :) This was one of the first things he tried explaining to me about his life outside of work. It was hard to picture until one day when Mom and I were walking about and saw it parked by the bicycles next to the building. But it is not a bike and if you refer to it as one The Hammer will correct your rather quickly.
What is that weird contraption he is driving? That is a velomobile. It is kind of like an enclosed tricycle but in reverse?. It has 3 wheels, 2 in the front and one in the back, where as a trike as 1 wheel in the front and two in the back. It is all powered by one's own legs.  This was the second thing that led me to believe that this guy was going to be a fun doctor to have.

Because there are many things that I do not remember during some of these posts, such as the last one, my mom has expressed that she would like to corroborate with me in filling in some blank areas so that sometimes I can have a post that fills in some of those unknown areas and clear up some things that I am a little fuzzy on.

Topic for the next post: Chemotherapy. Oh the joy.

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!

Today is a very special day. 7 years ago today I had a stem cell transplant to rid my body of leukemia cancer cells, which fortunately for me, worked. It wasn't the easiest thing and complications from the procedure forced changes in my life forever. What were those changes you may ask? Well, I guess you will just have to stay tuned. That is how you keep people coming back right? Intrigue... Although it may not be enough for a majority of people.

I have always wanted to write a book about my experience with cancer. Not because I want people to know everything but because I think it could help some out, especially those who are going through similar situations. When I was sick I never knew what to expect or what was to come and that scared me more than having cancer. The uncertainty. The thing that helped me out the most was getting to know others who were going through the same/similar thing. There were some that had already gone through some of the procedures and had received the drugs so they knew some of the side effects and could tell me what they experienced and what could happen. This helped more than what the doctors told me since they made everything seem like it could happen but doesn’t happen to everyone.

A lot of things happened during my treatment and some of it I can’t remember but I often have flashbacks of those times showing me what I once had forgotten.

The thing is, I don’t know how I would start out my book. Maybe I should just start writing one day and go from there…  It would at least give me something and I can always arrange things as I see fit later.

I think what most deters me from writing is knowing that I could never write a perfect paper. I always had spelling and grammar mistakes. I would hate to write a whole bunch of stuff just to know how crappy my grammar is.

Maybe I am just too scared. Scared of writing it and finding out that no one actually cares to read it. I wonder if all writers have that initial fear? How do you work through it? Just do it and put it out there and see the results and reviews?

I think wanting to help people get through the difficult time of going through treatments for cancer is what led me to want to become a social worker. However, I really do not want to live in a big city. I just wish I would have transferred to a school where I could get my bachelors of social work instead of needing to go to grad school. I am scared to spend even more money on school loans. However, I feel that if I keep waiting to find a job with my current degree I will never have a career.

I keep letting fear stop me from doing what I want. That is silly. I just need to put my fear aside and go for it.