13 Months and Counting...

Well, I'm still here! It's officially been 13 months since I initially became sick and I'm still sick. Not as bad as I was or have been, but still sick. I have problems with sitting or standing for too long. My calves, ankles, and feet become swollen. (Very Swollen) and it hurts! I've been really tired too. I can't do much of anything without becoming really exhausted. I take 3-4 hour naps daily and since I last wrote we've found out that my bone marrow didn't grow back in some places. I have a problem with my Femur bone (Top part) and my Hip Bone - not aligning because the Femur didn't get all the bone marrow back - it grates on the Hip bone and YES, it's painful.

My blood count is more stable these days. My doctor is happy and hoping that the next couple of months continue to show improvement. Right now I am at 400 mg of Cyclosporin - my Main drug and we are slowly tapering it down by 50 mg at a time. We started out on 600 mg - but we are going to taper it down to 350 at the beginning of next month and hopefully continue from there. The lowest it's ever been is 400 mg and then it tanked this past June. So, keep your fingers crossed that I will continue to get better - We will see next month if it will allow me to continue to taper down or if it will continue to be a problem.

I want to wish everyone who still reads me - A Merry Christmas and a Happy Holiday! Be safe and take care!

Are you still with me?

UGH! It's been a while huh? I've been going through a lot in the last couple of months and just haven't felt like posting anything. I wasn't sure how well my new treatment was going to work, but I'm holding my own.

My numbers are looking good at this point. We are going to start tapering off the Cyclosporin again and this is usually where I have problems with my blood count tanking. Hopefully this won't be the case this time, but one never knows, does one? I remain Optimistic...but Realistic too! I remember what happened last time and so, as I've said previously - "I'm not counting my Eggs until they hatch".

Something interesting to note...I was having a problem with my lower back and especially my left hip and entire leg down to my ankle. Well I recently had an MRI and it showed that I have Arthritis in my lower back. Other members in my family including my Mom have "Spinal Stenosis" which basically means that their lower spine has issues with arthritis, pinching of nerves, and the spinal canal being too small. So, some have already had to have surgery. My Mom's Dr. told her that she didn't have to have surgery - just have some physical therapy. Great news, huh!! :) My left hip has Bursitis - which is basically inflamation of the "gel filled sack" surrounding the hip bone/joint. Also -we found that my Femur bone has an issue. It began when I first was diagnosed with Aplastic Anemia and one Marrow Failure. Blood never recirculated to parts of the Femur Bone and therefore...it is essentially dead in some spots. I had been feeling a weakness in it when I would walk and I even thought..."It feels like it's going to break!" Something that I have to check up on with my Primary Care Physician.

So - that's the latest news! I have to send another posing soon to thank my Friend Trish and show you what she did for me. But that's another day! Until then...I hope everyone is happy and healthy.

Erin

A lot has happened since last I wrote

It's been just over a month since I last posted and a lot has happened during that time. I did go back into the Hospital because my Blood Counts dropped really drastically. I had a WBC of 500 and a Neutrophil count of 200. Those are really horrible numbers. However, I spent 6 days in the ICU at my local hospital and was given 4 days of Chemotherapy (using the ATG aka Horse Serum) again. I was also given a blood transfusion the day I left the hospital (July 13th) and it and the ATG seem to have helped TONS! My first blood test out of the hospital put my WBC at 4.8 and my neutrophils at 1500. That's incredible!! However, we don't want to get ahead of ourselves just yet...it took 8 months to realize that it didn't work last time and now we are going to take it easy and just see how well it progresses and taper my MEDS little by little.

Yesterday, Friday, I had a problem while I was shopping and started having really bad pains in my chest, it was difficult to breathe, I was sweating, dizzy and nauseaous and totally out of it for what seemed like 15 minutes - and no one seemed to notice I was in distress. I totally forgot that I had my cell phone with me too - DUH! I made it outside to the car and rested for a while and since I was closer to home than the Hospital - I went home and called my Primary Care Doctor who told me to immediately call 911 and to tell them that "I had a life-threatening disease and that my blood count could be deathly low or that I could be suffering a mild 'Heart Attack'". Heart Failure is one of the Side effects to the Medications that I am taking, but I just never had any symptoms like this before.

I was rushed to the Hospital by Tucson's Finest and they did a lot of testing and giving of Nitro-Glycerin and I even got some Morphine...that was a trip, let me tell you. Anyway - this morning (Saturday) they took me for a Heart Stress Test where they inject you with something that basically makes you feel like you are running up a hill (from zero - 60 in 4 seconds flat) - not a pleasant thing to do. Anyway then they x-ray your heart to see if it was damaged at all or if you indeed did have a heart attack. I DID NOT!! Yeah for me! They said that my Stress Injection Level was 73% which the nurse and Doctor said was excellent. ??? Apparently I passed with flying colors...So with that little bit of news I was released @ approximately 1:30 pm today. They still never figured out what it was. I wasn't anxious or nervous - who knows?

Very early this morning they took some more blood from me and I can't believe that in just 5 days that my WBC went from 4.8 to 5.5 and my Neutrophils went from 1.5 (1500) to 3.13 (3,130) Thats insane! INSANE! These are fantastic numbers and when my Doctor gets into his office on Tuesday - he is going to go BALLISTIC!! However - we must temper our enthusiasm, as we have seen this before...Not so quickly - but we have months and months and months to go of this to see if it will work this time. A little cautious optimism is in order right now.

My Doctor thinks that the ATG is like a miracle drug for me...I think that and the blood transfusion worked wonders. However, there are still some complications - my Liver Enzymes are elevated again and I have developed a problem in my left hip, thigh and knee which now makes it more difficult to walk because I now have a limp.

All in all - I'm happy and things are looking good. I have to thank my Heavenly Father for his ever ready hand that helps me walk, his shoulder that he allows me to rest my weary head on when I am weak, and for his love that gives me courage to continue each day - this is my Refiner's Fire. I am also grateful for the constant gift of the Holy Ghost - always surrounding me and blessing me with inspiration and prayers for others. I am also grateful for the Ministering Angels that surround me and buoy me up when I can't take another step. Most of all I am grateful for my Mom...she is going through this just as much as I am and it is so hard for her too. I love her so much and wish that I could do something, anything that would make her life easier. I wish that I could pay our mortgage off tomorrow and not worry about if we are going to lose the house or not. I want her to always have somewhere she can call home - especially if something does happen to me. I also love Tessa! My poor baby doesn't understand it each time the Paramedics and Firemen are called to the house, but when Mommy gets home...she is the happiest dog in the world. She is so beautiful and loving and good - I am so thankful for her!

More later - I must go to sleep. Oh before I go...I wanted to share with you something that I recently started doing again. I started a "GRATITUDE JOURNAL" that I fill out every night to help remind me what I was grateful for each day and also about beautiful things I saw, felt or others shared with me. It's really incredible how much you appreciate everything when you are looking at it with Praise!

Erin

Health Update

I went to my Oncologist yesterday and found out that my blood counts have drastically slumped. I currently have a White Blood Cell count of 1.9 and it had been 2.8 a week ago. My neutrophils (which are the most important part of the white blood cells) are at .3 - which means I only have 300 of them. I had a lot more...close to 2000 just a month ago. I guess you could say things aren't going so well!

My doctor wants me to start some new medication - but it has some serious side-effects, and I am the Queen of all side-effects...so, I don't want to take it. It can lead to a Brain Infection which can lead to DEATH. But it can also mean that if your brain is affected, that I wouldn't be able to speak for myself and that I could possibly stay that way!! These aren't really options as far as I'm concerned. Not really happy about the prospect of taking it. The other option is to start my Treatment all over again. At least I know what to expect, right.

I would be lying if I said that I wasn't concerned. Really concerned! But ultimately...I have to believe in the blessings that I've been given that said that I would be healed and live. My faith is a lot stronger than my fears...One must really believe in and have faith in the words that are spoken in a blessing...you can't give up just because things have become more difficult. I have to go and see my Renal Doctor today - The good side of this is that my kidney functions are normal! Yeah! and my Liver functions have come way down. They were in the 300 + category and now they are at 168. 145 is the highest it should be...so, it's doing a lot better.

I don't think I've said this before...but there have been some really good things to have come out of this whole mess. 1). My faith has increased immensely. It was already solid and strong...but now it's way beyond that. 2). I've never been able to grow fingernails and as a manicurist (in a past life) it was always a little embarrassing. But now my nails are so long and it's so nice. It makes me feel so girly...when nothing else does. 3). My eyelashes have grown really long. Dumb, I know...but they also make me feel more girly! :). 4). My endometrial ablation worked. I've had slight cramping and hardly any spotting. Yeah for me!

I praise Heavenly Father for his ever watchful eye over me. I am grateful for my Mom, more than words can say. I love her and wish she didn't have to work so hard to take care of us. But I'm grateful for her love, support and strength. I am also grateful for Tessa. I love her so much. She is such a good dog. She is the best and is always near by to lend her support or kisses.


Erin

So much has happened...

Hi! I know it's been over a month since I lasted posted anything, but it has been a really bad month! First - on May 13th I was supposed to get my Endometrial Ablation surgery and the day before on May 12th my Sister-in-law, Eva, passed away SUDDENLY. It was a huge shock for everyone! She apparently had a tumor at the base of her brain and no one, including her, knew about it. She was complaining about tiredness and the inability to remember words and how to say them correctly as well as no strength on her right side...and she attributed all of this to getting over a bad cold that she had. But she took lunch to her daughters at school then went grocery shopping and when she got home...she collapsed inside the door. Her keys were still in the door and she was clutching her purse and her groceries in her hand. Her dog, Jake was lying by her side. Next followed 3 weeks of waiting for an autopsy, she was given a rosary, a Mass, a Wake, and her burial and all of these were extended over a 3 week period for various reasons.

On the week following her death, my doctor didn't want to wait any longer and so we had the surgery the day of Eva's Mass and I was able to go to the Wake the next night. My surgery went well...I had a lot of cramping at first and then a lot of exhaustion. The surgery really took it out of me. But I've been fine since and haven't had any pains, bloating, or cramping - so, I go see the Doctor on Tuesday and find out if all is well.

Other news...My Oncologist is concerned about me because my numbers have dropped dramatically for some reason that neither one of us is aware of. I wasn't allowed to leave the hospital last November until my white blood count was at 800. My white blood count has dropped from 4,100 to 2,400 and my Neutrophils which are the most important ones...(they are new blood cells developed from my bone marrow) they dropped to 700 when they had been at 2,700. So, 700 is really bad. Like I said, neither of us knows why this is happening. We have been tapering my medicine and there hadn't been any changes in my #'s. We have been steady at 400 mg of cyclosporine (my main medicine) for 2 months and no problem. However, if my numbers get lower - say at 500 - then I will have to add another medication to take with the cyclosporine and then if it gets worse...I will have to start treatment all over again. I will have to go back into the Hospital for at least 7 days, 4 of which would be in the ICU and I would be given ATG (Horse serum) again and everything would start all over. If that doesn't work...then I will definetly be having to have a Bone Marrow Transplant.

So, as you can see...my life has been a lot of fun lately. I just was too tired to type and right now am getting really tired. Sorry if this information bums you out. You just have to look at it this way...I'm still alive and that is at least better than the alternative.

I still haven't heard from Social Security Disability since my 2nd application to them. I'm a little stressed and things are really tight around here. But we just keep plugging along and hoping for the best. There has got to be some kind of blessing in store for us soon...As always, we are grateful for what we do have and most appreciative of Family and great friends who help us out by providing service. Our Home Owners Association President even comes to our house and pulls our weeds for us for free. He's a great guy and we are blessed and grateful for his service as well as others. My neighbors, Kendra, Stephanie, Patrick and Emily are wonderful and we are really grateful for all they do for us.

Until the next time...God Bless you all and keep you safe, happy and healthy.

ERIN

Update on Pain, Pain, Pain!

Hey! Sorry it took me so long to respond but I've been exhausted and I thought that since I am having a procedure to fix the problem from my last post...that maybe I should talk a little about it. The procedure I'm having is called an ENDOMETRIAL ABLATION. What is it? Well, it's a procedure where they insert a wand into your utereus and then the open it up into a mesh fan. They then pulse energy (electric) through the wand for about 90 seconds and this energy basically cauterizes the utereus lining and prevents any further periods. So, that's that.

I am actually really hoping that there wont be too much pain afterward. I was told that there would be some potential cramping and some bleeding - but it's supposedly minimal. I am really hoping that the pain will be nominal. They will be using anesthesia (thank you very much!) and they will have extra cross, typed and matched blood waiting for me in case of emergency - since I do have Aplastic Anemia. My procedure is this Wednesday at 9 am. Wish me luck!

Erin