Friday, February 26, 2016

Cytoxan Round Five - Health Update

One more round of chemotherapy down, only seven more to go! I am so excited to reach the halfway mark next month. These past five months have been rough, but at least I now have a solid routine to survive the few days of hell after each infusion. I have a little "chemo go bag" equip with peppermint gum, nausea meds, barf bags, and tissues next to my bedside! Luckily I also have a husband who helps me in the wee hours of the morning while I vomit! lol This round was a bit easier than the last as I know how to space my nausea medication exactly right to get some decent relief the entire few days. As I mentioned before I am already seeing some awesome results. I no longer have inflammation markers in my blood, such as CRP and SED rate which is amazing! That means my body is beginning to heal from the massive amounts of inflammation it's endured over the past four years.

I am officially down to 8mg of Prednisone. The first week was absolute hell. Absolute HELL -- but my body is finally beginning to adjust. Hallelujah! At one point the pain was just too much and I had to go back up, but I am proud to say I fought through it and made the decrease! I feel my breathing has gotten easier, and that my digestive track is working a bit better as well. (I had a milkshake and just about died of excitement!) I go in for a big "half way mark" appointment the middle of March for some tests that will lay out exactly how much the Cytoxan is really helping internal organ wise. I cannot wait to see those results!

I have had a few doctors appointments as well, mostly Physical Therapy which I am really beginning to enjoy, and an Allergist appointment. I can already tell I am regaining some core strength as my lower back is no longer in constant pain. My arms and legs are also a lot more reliable than they were before we started! lol The allergist ran a few blood panels to decipher why I have been plagued with odd rashes, and near constant hives the past few years. Unfortunately the panels all came back in-conclusive, so I will be seeing him again in March to follow up. He did however start me on a basic allergy med to help the itching, and it's been wonderful!

I am started to gain back some fuzz on my head and I am super in love with it! It's very soft like baby hair, and much, much darker than my hair originally was! I even got back much of the eyebrows, and eyelashes I lost which is so nice. I no longer have to wear fake lashes, or completely draw in my brows, though still a little. Woohoo! So glad I could bring my readers a happy update this week.


Wednesday, February 10, 2016

"At Least It's Not Cancer" -- A Prejudice That Harms Patients

As a young bride barley off her honeymoon, I was diagnosed with a rare illness and told I would be lucky to see the age of thirty. My disease quickly robbed me of essential functions I never realized were a true privilege. Eating; biting into a delicious, juicy cheeseburger, abruptly become impossible. Now I had a tube. Breathing; simply walking and talking to an acquaintance became unfeasible. Now I had a tank. My months suddenly consisted of sixteen-plus doctor appointments and a bombardment of constant procedures -- just to stay alive. Chemotherapy wracked my fragile body every month in an attempt to destroy my malfunctioning immune system which believed my crucial organs, blood vessels, and skin were foreign invaders. In an instant my life, my husband's life, and my family's life were destroyed.

Yet, through this unbelievable grief, pain, and struggle, those around me seem to depict that my illness, the fatal illness that seized my body and destroyed the quality of life I had left to live, was somehow less tasking than another.

"At least it's not Cancer."

While many individuals are genuinely trying to express a supportive ideation, this phrase comes off as anything but. The statement brings on genuine emotional distress to those enduring rare illness, making them feel as though their anguish isn't important. Stating that one's disease is less distressing than another is not only unhelpful to a patient's situation, but extremely prejudiced. The phrase is frequently based not on fact regarding both illnesses, but off one's general understanding that Cancer is deadly, and the treatment is harsh. With media attention focused heavily on the devastation of Cancer, society truly has no idea how life-altering, and fatal other diseases of the human body can be, due to a lack of introduction. However, I don't believe that a shortage of knowledge should exonerate this improper comment.
Comparing diseases is a disrespectful habit that many people do not even realize they have formed. They have become so accustomed to watching those suffer around them from the epidemic that is Cancer, they are completely unaware, and sometimes even un-accepting that anything else could be just as violent. Many illnesses, such as Systemic Sclerosis which I suffer from, are rare, leading to a lack of knowledge regarding their severity and detriment to the body. While you may never have heard of this illness, it does not undoubtedly mean I am better off than if I were to be suffering from Cancer. The truth of the matter is -- many diseases destroy lives.

For most people the comparison epitome comes down to three important details: a patient's quality of life, the use of chemotherapy, and high mortality rates. These three essential elements lead many individuals to believe that Cancer truly is the most insufferable illness. Please be aware that I am not writing in an attempt to sway readers that one disease is worse than another, but writing to show the similarities that rare illness, and Cancer patients share. Hopefully, this awareness can bring about a positive change in the way we support all individuals fighting disease. So, let's take a moment to look at the similarities of Cancer, and my illness, Systemic Sclerosis, on the three topics mentioned above.

  1. Both diseases, depending on the severity or form, severely limit a patients quality of life. Both can strip away a person's basic human functions: breathing, eating, urinating, defecating, and their mobility, but also their appearance, independence, social life, business life, and financial stability. These illnesses rob patients of everything; their body is no longer their's. Many are bound to oxygen tanks, central lines, feeding tubes, wheelchairs, dialysis machines, IV poles, overwhelming amount of medication, and skilled physician care.
  2.  As in Cancer, many Systemic Sclerosis patients undergo intensive chemotherapy, and even Stem Cell, and Bone Marrow Transplants. They lose their hair, their fertility, and spend countless hours vomiting, desperately hoping for one small minute of nausea relief. They both suffer horrendous side effects of these treatments such as Graft vs Host from failed transplants, or other life long, potentially fatal consequences.
  3. Everyone has been affected by Cancer mortality in some way, whether it be a loved one, a friend, or a co-worker. You have probably watched someone suffer through a mirthless battle only to lose it in the end. I want you to know that Systemic Sclerosis, and rare illnesses like it, have high mortality rates as well. Patients are often given a short prognosis upon diagnosis, and told there is not much that can be done to assist them. Their battle will be filled with dismal treatments that rob the patient of their quality of life, only to end up succumbing to the disease in the end. As with Cancer life span varies, some patients only make it a few month, finding death in a hospital bed after a valiant effort to survive.

Many rare illnesses have no cure, no FDA approved treatments, little options for specialized care, and occasionally no hope for remission; the principle goal is to prolong a patient's life and attempt to keep them comfortable as the disease riddles their body. Countless rare illness have no awareness, little funding, and minimal support for patients, leaving many feeling alone in their never ending struggle.

After reading these similarities, is Cancer and a rare illness, such as Systemic Sclerosis, that different? Is one truly "worse" than the other? Is one patient's suffering more "significant" than another patient's? 

The reality is, both diseases have different stages, and forms, leaving some patients a prosperous prognosis, and others a poor prognosis. A patient's quality of life, their treatments plans, and overall outcome varies greatly depending on the organs affected in both Cancer and rare illness. So while yes, there are absolutely forms of Cancer that are much more deadly, with treatment much more hostile than specific rare illnesses, the same could be said vice versa. Is it truly fair for a by-stander to make that assumption knowing nothing about the illness they are discrediting?

Please recognize that comparing one's illness to another is not an appropriate way to console a suffering individual. Would you ever express to a Cancer patient, "At least it's not ________." More than likely the answer is no, so let's break this negative habit. Everyone fighting a battle deserves to be respected and extended empathy whether you have heard of their illness or not.

Saturday, February 6, 2016

Small Victories Realistically Celebrated - Health Update

I realize I have been neglecting my poor blog a bit! To be honest I just haven't had a ton to write about since the amount of appointments I typically have in a week has greatly decreased. The reasoning behind this being, I have completed just about every known diagnostic test I could possibly need in the near future, I am no longer trialing new medications since Cytoxan is my treatment plan for the next year, and I finally have a team of doctors I feel can competently care for me. Between these three situations my need to visit my physicians has seriously slowed, which has been a breath of fresh air for me! However, unfortunately for me readers it means less updates.

I still find myself quite busy with healthcare though! I am currently running Home Infusion twice a week, attending Physical Therapy twice a week, starting a new BiPAP sleeping therapy, and working on titrating down a few long standing medications now that Cytoxan benefits are starting to show. Not to mention running two medical support groups, assisting with a two local hospital clinical trials, and attempting to finally have a social life! (Got to fit in the "normal 24 year old" somewhere! lol) So you could definitely say my life hasn't slowed down much.

I am going to be honest, I was very hesitant to agree to Physical Therapy, the reason being? It's boring and slow paced, and as I am sure you can tell -- I am not a slow paced person. Also, though I hate to admit it, there was one other reason I was hesitant. It would create a weekly schedule.
I cannot tell you how nervous I was to have "somewhere I needed to be" twice a week. While that seems ridiculous as probably everyone reading this blog works 5-7 days a week, I have not had any weekly commitments since ending my profession. The thought that I was to be responsible to get out of bed and make it to PT scared me. I honestly cant explain why -- but it did. I remember the last few months of working back in November of 2014, terrified everyday to go to work in pain, exhausted, and crippled. Wanting nothing more than to stay in bed and sleep. I adored my career, but my body did not. I felt like such a failure when I couldn't attend work due to my illness. After a 30 day hospitalization, and the onset of State Disability, I remember waking up everyday with absolutely no schedule for the first time in my life. No school, no work, no commitments. I was able to one hundred percent focus on my body and its needs. If I felt sick I stayed in bed, if I was in pain I stayed in bed, if I couldn't leave the house that day I wasn't wracked with guilt. All that shame and fear I had while working disappeared, and with it so much of my anxiety.
I know it's irrational to worry about a one hour twice a week commitment that will only better myself, but for some reason the feeling is there. I really am enjoying PT though, and hope these feelings of worry will dissipate in the near future. Right now we are working on isometric strengthening of my arms, legs, and core.

I am extremely excited to start removing, and lowering the dosages of my long term medications as the Cytoxan begins to eliminate their need due to its high potency. I currently have cut out a few prescriptions completely, and even began to lower the dosage of my steroids. Extinguishing the need for Prednisone has been a goal since I was first prescribed it in 2011. For the first time in 4 years I am below the 10mg mark! I cannot tell you how excited I am to (hopefully) get all the way off this drug by summer! Maybe one day I will lose the "moon face" it has so graciously provided me the last many years. Woohoo! Even with all the purging of medications I am still taking fourteen prescriptions (not counting infusions or as needed meds) a day to function somewhat normally. While that still seems like a lot, it is actually a huge achievement! Prior to Cytoxan I was on twenty-three.

While there are some things I know won't improve, or ever change with my health, I am happy to see small victories being made. I am grateful for amazing physicians who finally have me on the right treatment plan to give this illness hell -- and hopefully prolong my life a good few years. While there is no guarantee the positive effects will last, I will take every "decent" year I can get! Please remember there is no cure for my ailments, no treatment that can simply put it into remission, or extensive surgery that can take it out. I will be fighting the rest of my life whether it be direct effects from the disease, or the side effects of harsh treatments. Life with autoimmunity is a constant battle, one that is often lost; however, that doesn't mean I will ever quite celebrating the small pieces of my shattered life I am able to reclaim -- even if it's only for a moment before they are lost again.