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

Pain, Pain, Pain...and light at the end of the tunnel!

So, things had been going along fine...not great, but o.k. On Friday, April 18th I started having extremely painful cramping and clotting. It was really horrible. I've never felt pain like that before. It completely zapped my strength and wore me out entirely. I took a muscle relaxer hoping that would help...but it didn't. So, an hour later I took an Oxycodone (Pain reliever) and within 15 minutes I was feeling no pain.

So - on Saturday when I woke up...I was really suprised to be feeling a lot of pressure again. I took a muscle relaxer and wouldn't you know...it still didn't help. So - anhour later, I took an Oxycodone - but it didn't work. I was completely in the worst pain I have ever felt. It felt like there was something inside of me trying to claw its way out. I was in excruciating pain that was so bad that I couldn't even walk. So, I called my Oncologist and he said to go to the ER right away.

My Mom took me to the ER and we had to wait 2 hours to get in. By that time, my pain reliever started working and I wasn't in as much pain. I had to have a Pelvic Exam and the Doctor said that it felt swollen on the right side. He then asked for a Pelvic Ultrasound and they ended up finding numerous Fibroids in my Utereus. The ER Doctor said that I should have a Hysterectomy! He said that I shouldn't go through that kind of pain again and that I would again next month unless this was taken care of. He also said that I had to get in touch with and make an appointment with my OB-GYN as soon as possible.

So, I have an appointment tomorrow with my OB-GYN and hopefully she will help me and perform the Hysterectomy. There is a chance that she won't do it - because of my Aplastic Anemia. But frankly - I'd rather bleed under a controlled situation like an operation than waiting around for next month. Let's face it...I'm 47 years old and I'm not going to have children at this point...so a Hysterectomy is a logical and smart move. Hopefully all of my Doctors will approve.

I'll update this as soon as I know more...

Erin

New News - Update on Health

Well - I haven't written about my recent Dr's Appointments. I've seen my Primary Care Physician as well as The Kidney Specialist and my Oncologist/Hematologist all within a week of each other.

I'll start out with the Kidney Specialist. He told me that my Kidney Levels were way to high. It should be at 0.9 and it is actually at 1.57. He said that there is probably damages to my Kidneys, probably a lot of scarring. He is concerned, but he wants me to take some more tests. He wants to check my Cholesterol levels, Do a Sonagram of my Kidneys and Liver to verify that there has been damage/scarring to them. The biggest thing is that I have been taking the same medication since I was in the Hospital (Cyclosporin) and I was on 1000 mg per day for a long time to bring my #'s up...but this can also lead to a lot of problems with the dosage so high. So I am now on 500 mg - but the Kidney Specialist said that I should really be on about 100 to 200 mg tops. So - there may be damage to my Kidneys and Liver...but there really isn't anything that he can do at this time. Because - if he treats my Kidneys and Liver then they have to lower my Cyclosporin dosage to 100-200 mgs and if they do that...they risk the chance of my numbers crashing. So - they can't do that. It's like trying to choose the lesser of two evils.

My Oncologist/Hematologist: He recently took me down from 7oo mg of cyclosporin to 600 mg and now I'm down to 500 mg. He told me just the other day that he was thinking of putting me on a different medication. He's really concerned about all the side effects that I have...but warns that I could possibly have other side effects from the new medication. So - I don't know what he will choose to do. I don't know that it will be worth changing the medication since we already know what I'm facing with the one I'm taking, plus he is slowly tapering me down. Of course I don't want my Kidneys or Liver to continue to be subjected to being more damaged - but I don't know that I want to choose something new either.

My Primary Care Physician: He just changed my Blood Pressure medication. Yeah! I was taking Blood Pressure medication 4 times a day and it wasn't even under control. The BP fluctuated from normal to really high and it was a pain. Because I would have a BP reading of 177/123 which is REALLY, REALLY BAD!! Now I take the Medication in the morning and in the evening - so it is really nice and my Blood Pressure has been in the lower to mid range since I started last week. So, I'm happy that one of my side effects has been taken care of. That's all I have for now... Thanks to everyone who has commented on my blog, called me and sent me e-mails. I really appreciate it. You can't imagine how hard it is at times to be alone and have no contact with anyone...especially for someone like me - the worlds biggest extrovert! :)

Been A While...

Well - I can't believe that it's been over 2 weeks since I last posted on my blog. It has been a little stressful lately and I haven't been feeling too well. Anyway - My numbers have kind of taken a nose dive since the last time I wrote.

My White Blood Count is now: 3,400 which is 600 Short of Normal.


My Red Blood Count is now: 3,480 which is still shy of normal - but normal is 4,300 and I've
never been at normal in my RBC, so we take what we can get.


My Platelete Count is now: 242 which is mid-range normal. (130-450)


My Neutrophils are now at: 2,100 - They have been a lot higher in the past.

My Oncologist lowered my regular dosage of my Main Medicine from 700 mg to 600 mg and my numbers started falling. I see him this coming Tuesday and hopefully he'll tell me that everything looks good. I don't know though...I'm a little concerned. I haven't been this low in a few months...It's kinda scary sometimes.

Tomorrow I'm going to see a Kidney Specialist because my Kidney Functions were really elevated. They've come down...but they were elevated for a while and we want to check to make sure that my Kidneys haven't been compromised. Wish me luck! That's all the new news that I have. Hopefully I will have better news tomorrow from the Kidney Specialist and good news from my Oncologist. My Primary Care Physician has taken me off of one of my Blood Pressure Medicines. I was taking 3...He gave me something new and wants me to use the 3rd one only if absolutely necessary. The great news is that I only take them in the morning and at night before bedtime. I really hope this regulates my Blood Pressure and the ideal thing would be to get off of this blood pressure medication as soon as possible. Then hopefully that would lead to me getting off of the 4 times a day of checking my blood sugar. A girl can hope!

Everyone have a great weekend!