Life After Cancer: Sick Days

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

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

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

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

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

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

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

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

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

Life After Cancer: When Lungs Suck At Being Lungs

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

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

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

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

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

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

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!