Guest Blogger :)

A couple of weeks ago a fellow blogger contacted me about having a guest post on my blog. His wife survived mesothelioma and they are both active in the blogging community. The following is Cameron's story of being a caretaker. His wife does not have NMO however being a caretaker can be a challenge no matter what the issue is.

The Struggles and Silver Linings of Caring for a Cancer Patient.

November 21, 2005: It is a day my wife and I will never forget. It’s the day Heather was diagnosed with malignant pleural mesothelioma. On that day I became her caregiver; a job I wasn’t prepared for to say the least. Just three months earlier, we celebrated the birth of our only daughter, Lily. We thought we would be spending this time of year celebrating parenthood and preparing for Lily’s first Christmas. Life had other plans.

The reality of being a caregiver of someone diagnosed with cancer solidified before we even left the Doctor’s office. Our doctor told us about the disease and treatment options. He gave us three choices: the local university hospital, an otherwise amazing regional hospital that lacked a developed mesothelioma program, or Dr. David Sugarbaker-- a Boston mesothelioma expert. I looked over at my wife. She was silent. The look on her face was one of incredulity, saying “Oh God, please help me!” I looked at our doctor. “Get us to Boston!” It was the first of many tough decisions to come.

The next two months were ruled by chaos. We had both held full time jobs. Now I was down to part time and she was out of work altogether. My time was needed elsewhere: at doctor’s appointments, making travel arrangements and traveling to Boston, and taking care of Lily. The list went on and on. My mind played out the worst possible scenarios. Heather dying. Losing all our money to futilely combat the disease. My daughter and I, out on the street. Alone. More than once, I found myself on the kitchen floor balling my eyes out. I wanted it all to go away. But I couldn’t let Heather see my pain. I needed to be her rock; I needed to be strong for her. 

We were blessed though. We had such a strong support system. Everything from comforting words to financial assistance was offered. We can never fully thank all those who helped us. One of the few bits of advice I can offer to other cancer patients and caregivers is that if someone offers help, take it. It will remind you that you are not alone, and it is at the very least a small weight off your shoulders.  There is no room for pride when your or a loved one’s life is on the line. There are others who care about you; people who want to help lighten the load. Let them.

Being a caregiver of a cancer patient is difficult. There is no getting around it. You’re going to have chaos and stress. It will be the toughest test of your life. Unlike the rest of the “real world” you can’t walk away. Don’t be a prisoner to your fear and anger. Allow yourself to have bad days, but never give up hope.

It took years for the chaos to settle down. Heather has gone through surgery, radiation and chemotherapy fighting mesothelioma. She beat the odds, and thankfully is completely cancer free to this day, over seven years later.

This ordeal reminded me that time is precious. So two years after Heather‘s diagnosis, while working full time and caring for Heather and Lily, I went back to school full time studying Information Technology.

The stresses of school were nothing compared to what I went through. I excelled. I graduated with high honors and was the student speaker for my class. I remember my graduation speech well. It was about Heather and our struggle. I would have never predicted I would be on that stage, giving that speech. I gave them the most valuable lesson I learned during our struggle: never give up hope. Realize that, within each of us, there is someone capable of accomplishing amazing things. You just have to believe.

If you would like to get in contact with either Cameron or his wife Heather you can check out their blogs... links below.
http://www.mesothelioma.com/blog/authors/cameron/
http://www.mesothelioma.com/blog/authors/heather/

Just Another Notch In My Belt

After the usual hassels one must go through with the insurance company before each infusion, I finally received my Rituxan infusion on the 28th of December. As you know I was going back in forth on if I should have the infusion after a year of everything being good. However, I'm glad I went through with it. Two weeks before my infusion I had my bcell levels tested and it was at 1%. The day of my infusion they retested my bcell levels and it had already jumped up to 3%. Now all I can do is wait and see how long this infusion will last me.

Now it's time to get back to life.

Proverbs 16:9

Everyday I wear a silver, metal bracelet. You'll never see me out of my house without it on. It's my medical ID and so it has important information on it. Lately I've been looking at it every morning wondering if I even needed to wear it anymore, since I've almost gone a year without any real issues. Truth is I wear it more for myself than emergency personal. See I have Proverbs 16:9 engraved into it along with the name of my disease and contact info should anything happen to me. Proverbs 16:9 is one of my favorite verses because it reminds me that it's not my place to ask "Why?". Though I might set my heart on something and plan accordingly, God has the last say and will lead me as he sees fit. 

A man’s heart plans his way,
But the Lord directs his steps.

Proverbs 16:9  

I want to ask God "Why?" but I know there is no real point. It's not my responsibility to know why things happen, it is however my responsibility to be faithful and to continue putting one foot in front of the other. Besides knowing the why wouldn't make any of the challenges I face disappear. I stated in my last post that December would be a year since my last infusion and that I was looking forward to celebrating this. Guess God had other plans, which for the past 4 years has been the case pretty much all of the time. Three weeks ago I got the results back from my monthly blood work and my Bcells have reached 1%. I could say I'm disappointed or angry but that isn't true, probably because it really hasn't sunk in yet. Right now I'm waiting for the insurance company to approve 2 infusions of Rituxan before the end of the year. Even knowing this I don't think it will really hit me until I'm sitting in the chair getting the infusion. I know then that I'll be angry because I wanted so bad to be able to reach the one year mark. I'm sure that I'll look down at that point and see my medical ID and once again be reminded that my plans are not always what he wants for me.

I considered putting off the chemo even though my Bcells are at 1% but my vision has been getting worse over the past two weeks and I'm battling fatigue daily. I wanted to make it a year, I wanted to celebrate something that a couple of years ago seemed impossible. Instead, I think I'll celebrate the fact that I have a Savior who can give joy through all that I face. Here's how I look at it... God could grant a miracle and cure me of my ailments and be done with it, instead he has worked daily to give me joy and peace in him for the past four years. Frankly that's a lot of work because it's easy to get depressed, yet he continues to stand with me and to not give up on me even on the days I break down and scream "WHY?!" 

Getting caught up in living life.

It's been quite some time since I last posted, this is mainly due to laziness. Although I haven't posted I have made a lot of changes concerning my care and life in general since my last post.

As for changes concerning my care: I am no longer doing chemo treatments every two weeks... in fact I'm not doing them at all. That's right it's been 10 months since my last treatment and my Bcell levels are still below 1% for the moment. I did the treatments at two week intervals for a period of 6 months at which point I just decided that I was tired of spending so much time in the chair taking treatment. I have also switched doctors and am now back at UTSW with a doctor that specializes in NMO. Trust me this was not an easy decision and neither was hitting the 6 month mark and turning the doctor down when he wanted me to have an infusion. I took a chance on finding a sort of "remission" almost a year and a half ago, and I'll never know if it worked if I keep getting chemo before anything happens. It's also been about 3 months since I've had any sort of daily medication. I made the decision to come off all my daily medications and I'm currently only taking antibiotics if I get an infection. So far it's working out well. I no longer have pain in my shoulder from the nerve sheath being removed during attacks and my leg spasms happen very rarely. Being off chemo I no longer have issues with insomnia so I was able to stop taking sleep aids. Other than fatigue, I'm currently exhibiting very little symptoms if any at all day-to-day.

As for life changes: I made the choice to go back to work and come off disability fully. This was probably the hardest challenge because I had to leave a great job due to my disease and I've discovered that coming back to the workplace after almost 2 years not working is difficult. Other things that have changed... I'm single and I switched mid-way through my transcription courses to medical coding. I have a couple more exams to take before I'll finish the medical coding courses and I hope to take my certification exam before the end of the year.

Overall things are good, I just had an appointment at UTSW and got awesome news. I had MRI's done 2 months ago and as of today they are unable to find the lesion on my brain stem and none of my lesions are active. In medical lingo that's a diagnosis of unremarkable.... sounds pretty freaking remarkable to me! :) I had the best neurological exam I've ever had to date. As it stands now, it looks like I'm all set to celebrate a year in "remission" in December. That's honestly something I never thought I would be able to say, so I can guarantee you it will be a fantastic day spent thanking God for how far I have come since May 1st, 2008. 

Victory!!!

I'm doing a victory dance because I won my disability case! Amazing as it is on my first try I was able to not only get approved for disability but they also back paid me for the time I was unable to work since May of 2008 when I first got hospitalized. So I've got a pretty good chunk of change sitting in a savings account and I'm finally not having to worry how I'm going to pay my bills each month. Wow! It's amazing how much better you feel when you're not constantly stressed out over money issues.

So since things are on the up and up I'm signing up for school to be a medical transcriptionist. My plan all along has been to get a treatment regiment that allows me to be in a sort of "remission." I'm going to use this next year to go through treatment, do school at my own pace, and just get myself in better health. Of course this may take more than a year but at this point my doctor and I are shooting for the goal of "remission" in a years time. After which point I would like to get off disability and go back to work full time.

At the moment I'm sitting here going through medical bills and calling to settle what debts I can. Luckily through all of this I've learned that since it's taken me so long to be able to settle my debts I'm able to haggle back and forth until we come to a lower amount that both parties agree will cancel out the debt if paid in full. I'm trying to make the money stretch and pay as many people off as I can.

I'm really enjoying the fact that my fatigue (which for the most part has been the hardest symptom for me to deal with) has lessened drastically and I'm now able to things that I enjoy. Zane will be flying in on the 23rd to stay for a couple of days and meet my family. I'm super excited about this and hoping everything will go well. Guess that's all the news I have for now :)

Update on Life and Treatment

So I didn't realize that people are still constantly stopping by here to read this blog... Guess it's overdue that I update you guys on how life and treatment is going.

Well, we fought a 5 month battle with the insurance company but we finally got them to agree to pay for a portion of my Rituxan. So I'm currently doing 1000mg every other Thursday. My bcells are staying under 1% and I'm happy to report that I'm doing much better. If only this Texas heat would dissipate I might be able to get out of my house more often. All in good time though.

I'm doing so well that I was able to go on vacation! That's right my boyfriend flew me out to Ft. Bragg, NC for 10 days and it was wonderful. Since it was only in the 80's the entire time I was there we were able to go swimming, play putt-putt, and even go to Carawinds amusement park! It was wonderful to be able to do all these things and even better to be able to spend time with him.

Zane and I

As for disability they were supposed to make their decision this week but it's a holiday so I haven't heard anything back yet. Hopefully I will know Tuesday morning, keeping my fingers crossed and just praying for God's will in this situation. If the decision is a no I do have an interview set up Tuesday afternoon for the position of Senior Financial Associate with Raytheon. Whatever happens I know I'll be able to make it work because I have God in this fight with me and he won't let me fail.

That's a quick update for now... I'll update as soon as I know more about my disability case. For now I'm just learning to grow closer to God and enjoy life day to day.

Road Block...

Monday I met with a new doctor who has been doing stem cell transplants since 1968 and also founded the bone marrow transplant unit at M.D. Anderson hospital. I was hoping to have him do my stem cell transplant since he's local, that way it would be cheaper and less stressful with me not having to travel. However he declined and said that he didn't see a point in doing the stem cell transplant. He explained that when harvesting the stem cells there is no way to separate adult and infant stem cells from the other... because of this he said that after a period of time my body would "reset" and I would have Devic's again. He did talk to me about my current treatment and treatments I have had in the past and he discussed going back on Rituxan but using a higher dose and getting infused more often than I did in the past. Ultimately after discussing the risks with him and my parents I have decided to give his treatment plan a try. Not only does it sound different and like a more common sense type of approach to treatment but he has also had success in seeing a type of remission in another Devic's NMO patient.
Of course this is not how I wanted this adventure to go and I have yet a long road of many infusions in front of me but I feel it is the best option when everything has been laid out on the table and I've viewed both sides of the argument. For each and every person that donated I will be contacting you personally but I wanted to say thank you to those individuals who cheered me along and got me this far. 

Some Good News

It's been a whirlwind couple of weeks. I found out yesterday that my Dad's health insurance is going to cover me now that I've lost my health insurance. Luckily because I live with them I can be insured under their policy until I turn 26. At which time I will have to go back through the issue of Cobra and state insurance pools because as of right now I'm can't gain insurance private means.

Valentines day has come and gone and I'm happy to report that my Mom and Cookies for a Cure earned $518 in sales and donations to go towards my stem cell transplant. That puts Pocket Change Cure for Devic's NMO now just over the $1000 mark in donations.

I finally received all the paperwork for my long term disability claim. I'm hoping to learn something here in the next few weeks.

Although slightly bored with the lack of things to do when not subbing, I'm glad to report that my health has been fine. Rest goes a long way... it's amazing how just trying to live a normal life can wear out a person who has Devic's and cause major issues.

Update

It's been awhile since I've posted or even updated the donation tracker, it's just that a lot of things are have been going on here lately. I started a new job, I'm now subbing for QISD. I must say it has taken some getting used to being out in the work environment after working from a home office for the past year. The first day didn't go so well I ended up having a panic attack but luckily that was on a Friday and I rested up over the weekend and tried again on Monday and was able to make it through the whole week with no issues. I'm really enjoying subbing... it not only gets me out of the house but it's also teaching me how to deal with my stress levels since that effects NMO patients greatly.
As for the whole disability paperwork I got a call from the doctor yesterday and she said she agrees that me going on disability until after the stem cell transplant would be the best thing. Now I'm just waiting on them to mail the paperwork back to me so I can send it all off and start the approval process.
I'm still kind of lost in the land of insurance but the company that handles my insurance is supposed to be calling me Monday to help me sort through all of my options. As of right now we're still trying to decide if the best course of action would be for me to go on Cobra or to be switched to my parents health insurance plan for the next two years.
I still have not sent my paperwork off to Northwestern University I'm going to try and call to get all my medical records this week. Ugh! That in itself is a job I'm not looking forward too. However I have to get it done if I want to get the ball rolling on getting approved for the transplant.
As for other news health wise I'm doing well just a little on the tired side because of going back to work, I'm praying that my body will eventually adjust to this since fatigue is one of the major side effects of Devic's NMO that I fight with on a daily basis. Cookies for a Cure my Mom's part of the fund raising efforts has really taken off... she's been working long days and long nights to decorate all the cookies that have been ordered.
There's a quick update I have some other posts that I'm working on and hope to get those up tonight... we'll see how that goes. <3

Small Hands and Large Plans

My hands are small... really small, but I'm a small person so they fit me. However his hands are big, they're also nail scarred. I don't mind though cause without those scars he wouldn't have been able to save my life or carry my burdens. I knew when I started down this path with Him that it wouldn't be easy... it's okay though I won't give up cause he's holding my hands helping to steady each step. I look at my hands some days and wonder how hands so small could change the world, but that's when he tells me that it's not about changing the world it's just about reaching out to one more person. I'm lost somewhere among LTD forms, cobra premiums, and a need to understand things. I want to complain but instead he still gives me a reason to rejoice... After about 2 months of having a blind spot in my left eye I'm happy to report that my vision is back! It's a little blurry but when you're starting to compare your troubles to Job's, it's a small victory that I'll take.

In a week I'll be 24... I'm facing many issues that I never thought would cross my path, much less at this age. I started this blog with the full intentions of being honest about every step. I still intend to do that, I just need some time to gather my thoughts.  It doesn't help that my best friend is away training for military purposes but thank God for text messages. <3