Birthdays Are A Blessing

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

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

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

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

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

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

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

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

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

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

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

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

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

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? 

Cancer and Discrimination in a Small Town

I may be cancer free, but it will always be attached to me, especially while living in a small town where everyone knows my name and my story.

Yes, I have permanent side effects from all the chemo, radiation, medications, and stem cell transplant. I have a rare and progressive disease that affects my heart and my lungs. But I am still alive and able to work. Sure, I may get sick from time to time, but doesn't everyone?

I love living in a small town, until it comes to finding employment and people knowing way too much about my previous health issues, and some current ones, and worrying about what I cannot do instead of giving me a chance to show them what I CAN do. I kicked cancers ass twice while maintaining a part-time student status. Stop discriminating and start believing!

How do you prove yourself if no one is willing to give you a chance?

I love to work and have really enjoyed the jobs that have given me a chance. Working at the greenhouses right outside of town has allowed me to work outdoors, which is great since I love being outside and I get to work with native plants and I share my love of the outdoors and plants with my mom. In the past I absolutely loved working as a certified nursing assistant in a hospital setting as well as a nursing home but I had to resign from that position since I had to lower my lifting limit to 20 pounds due to my cardiologist's demand in effort to keep my heart and lungs in a more stable condition. The director of nursing at the nursing home was really sad that I had to resign because she knew that I was a hard worker and enjoyed myself as well.

That is who I am. I love to work and enjoy everything I am given the opportunity to have. But I cannot enjoy that if no one allows me to show them how much I love to do a good job, and my best, at what ever I do, and have a good time even while performing even the most daunting of tasks. Enjoying your job makes those you work with enjoy theirs, as well as anyone around you.

I love my town, but I may be forced to move just so I can find a job where I can use my degree in human services and psychology, because working makes me happy, and all I want is to be happy and enjoy this life I fought so hard to keep living.

Maybe one day I can survive off of selling my art pieces, which has always been a dream of mine. Until that day I will continue to search for employment while working on art pieces in my spare time.

Just in case you are wondering I am working on getting something set up so people can order prints of paintings, drawing, photographs, etc. that I have completed.

As always,
Lotza love.

My Cancer Story: "It Is Just Hair, It Will Grow Back"

"It is just hair, it will grow back."

As much as you would like to think or hope, those are not the words a person wants to hear when their hair starts to fall out after chemo or when they find out that they are going to need chemo and that is one of the possible and likely side effects. It was a common sentence in the days before and when I started to loose my hair. I liked to manipulate my hair by braiding, curling, flipping, twisting, coloring and cutting it in various styles. Thus, hearing those words did not comfort me or make me suddenly realize that they were right, it was JUST hair.

Instead, having someone tell me that my hair would come back just made me feel silly for being upset that I would be bald. I don't know why people wouldn't just let me be upset about losing my hair. I like having hair, who doesn't? I was also well aware that my hair would return but knowing that did not change anything. It would take a while for the chemo to wear off enough to allow my hair to start growing back and even when it did start to grow it was a very slow process.

When I first started chemo I was too sick to really care about the side effects and losing my hair. I just knew that in order to get better I needed to go through the treatment recommended by my doctors. It wasn't until I started seeing my hair on my pillow in the mornings and then noticing large clumps coming out while taking showers when it really hit me that it was time to shave it off.

When I first started to notice my hair falling out I knew it was a matter of time before I would loose it all so this was the time to try something new, mohawk, spikes, edgy looks, etc. So, one of my friends brought a friend of hers that was in cosmetology school who gave me what I thought would be the first haircut and in a couple days I would get another one making it even shorter, probably mohawk style. However, my hair fell out too quickly for me to be able to mohawk it, which kind of made me sad. Instead of increasingly shortening each cut I shaved it a few days after the first cut.

It was but still was not an easy decision to make. Before being diagnosed with leukemia I finally got my hair cut and colored the way I really like it and was super excited about that achievement, what can I say, I was 19. Then just a few weeks later I was getting ready to shave it all off. The easy part about the decision was that all that hair on my pillow and my shirt was super annoying. The hard part was realizing that I finally reached the stage in my treatment where I would be bald for quite some time afterward. It made me think of what it would be like when I was able to go home and how I would respond to others looking at me, starring, and wondering why I was bald in the middle of winter.

I then had to decide if I would sport the new look, wear some fun funky hats, or try and find a wig that I liked. I went with the fun funky hats since I was not all that comfortable wearing a wig and they seemed to itch and were kind of hot. I also learned how to tie a scarf around my head, which was cool but did not seem to keep my head warm enough.

The first time I lost my hair I was really self conscious about it and would wear a hat at all times. For the most part it was because the air was cold and the hat kept me warm, but I also just did not feel comfortable without the hat. It became my security blanket. It helped hide the fact that I had cancer, especially when I was out and about. No one really thinks about someone wearing a hat in the middle of winter so it helped deter the stares that I experienced the second time around.

After I relapsed in 2005 I decided that I could care less what others thought. Of course there was a small part of me that was uncomfortable with people staring at my bald head, but I also knew that the human race was curious about every abnormal thing they saw in society and being a bald women was not normal.

I still wished that I did not lose my hair both times and it did not help that people once again said that it was just hair and it would grow back. I knew that from my previous experience with cancer and it does not make anything easier. Knowing how hard the first experience with cancer was did not make the second any easier just because I knew what could come as well as the fact that there was no way to tell what else could happen.

Sometimes when you try to say something to help make someone feel better it ends up making them feel like they are being silly for feeling the way they do. Understandably, some people do not know what to say so they say what they first think. Sometimes not saying anything, but instead listening to what another one is saying is the best. At times the comforting words helped but at other times I just wanted someone to listen to me rather than respond with words of encouragement. Sometimes that is all anyone needs.