Living

One of my good friends commented that she thinks I should be writing more about the LIVING aspects of my life, rather than just the disease. I have been thinking very much along the same lines. Unfortunately, the MG and all the drugs and treatments and side effects have taken over our lives. It has crossed my mind several times that once we are through the chemo and I am well, I won't have anything to talk about anymore. One of my wonderful nurses said that I have much more to talk about than I might think. lol I am pretty sure that is a comment on my being a blabbermouth when I am being infused.

The thing is, being on hold and not knowing if the anemia was another huge health problem has really tapped my energy. Just sucked a lot of my ability to think positively right out of my body. I was filling out some paper work the other day, and it asked occupation. All I could think of was "professional patient/ sick person". Now I know this sounds like sour grapes. Seriously. I try not to complain. I hate to be like that. I don't want to worry anyone.

We are facing a big hurdle here, and doing our very best to stay on top of things. It is daunting to look at my calendar for the next month. There isn't a week without at least 2 doctor's appointments or treatments. We will get through this, and I am going to be well. Life is going to be so different after this treatment. Believe it or not, I am actually kind of excited to be going ahead with the chemo. I have been waiting and praying to be healthy for so long- I just know this is going to do it and I can't wait to get started. In just a week or so we will have the answer from Dr. Buff if/when I will get going on this.

On the home front, the kids and Jason and I are starting to see the light after being sick since Christmas Day. I'll tell you, if there is anytime to have an entire family sick, right after Christmas when you have a house full of new toys is a good time to do it. Right now the kids are putting away the new trains and setting up a ball for all the barbies. Katherine is a lovely Sleeping Beauty, and Thomas has a very interesting fur collar and fuzzy hat on over his Lightening McQueen pajamas. Katherine has informed me that if I am not formally dressed I will be thrown out of the ball. I suppose I better go put on some fancy attire, so my children don't kick me out into the snow.

Have a safe and Happy New Year's Eve everyone!!!!

I'll Take What I Can Get

Hello everyone! I am so excited about the new subscriber feature my friend Jess helped me to install on the blog. By the way, have I mentioned that I detest the word Blog? I so prefer online diary. I suppose it is a resistance to the changes happening in the world and my general resistance to technology and most things computer related. Some part of me still pictures Mr. Wild back in Montvale and that awful computer class we were forced to take on commodore 64s. Remember the big black screens with all the green writing and all those terrible flickers? It makes me nauseous just thinking about it. Kathy and I would do just about anything to avoid that class. We spent hours upon hours re-arranging the art store room and putting up the displays in the windows we had throughout the school. Oh good old Fieldstone Middle School!

Forgive the rambling. I know this is a site about Myasthenia and my travels, but sometimes I just don't feel like talking about it. Or writing about it for that matter. I suppose that is why you all check the site, though, so I guess I will fill you all in. This morning we spent a few hours in the ER with Katherine with suspected Appendicitis. It looks like it is just a tummy bug, but I am glad that I brought her in, regardless. She was just fantastic with all the poking and prodding and the xrays. I was very proud of her. Life goes on, despite all that is happening in my body! My beautiful children still need a Mommy- and I am happy to fill the position.

Yesterday I spent first part of the morning with the hemo/oncologist to have MORE blood work and then getting the results of the Bone Marrow Biopsy. It is amazing, all that I know about MG and all that I don't know about blood and bone marrow. I became pretty overwhelmed. I am sure Dr. Buff (the hemo/onc) must feel like he has answered the same questions a million times. Unfortunately, I continue to ask the same questions repeatedly and rephrased either because I don't understand the answers, or because I would like to get different answers. All in all, it is good news. There isn't anything terrible going on in my marrow. Apparently the Red Blood Cell/ White Blood Cell ratio is off- with there being more RBC that are necessary. Dr. Buff is taking this as a good sign that whatever the event was that caused the severe anemia has passed. It could have been a virus in my blood (which we tested for, but could have already cleared by the time we did the tests) or it could have been some medicine that I took. I am going with the second choice although the Doctors are all skeptical. Cyclosporin doesn't usually cause hemolitic anemia.... but then it also doesn't totally incapacitate most people like it did to me. Nor are there many myasthenics who are so drug resistant they are forced to re-boot their immune system. So for the sake of my mental stability and to allow myself to continue to think positively, I am going to blame the cyclosporin.

The really excellent news is that it was worth doing the BMB- I would have been kind of upset if he had said it was useless! He is now comfortable going forward with the chemo, so long as my hematacrit doesn't drop again. I had 60g IVIg immediately after my appointment with him and he wants to wait a week or two to be absolutely certain that it isn't the IVIg causing the anemia. I am sure it is not. For now I am holding steady with a CRT of 29. Supposedly it should be around 44- I am pretty sure mine has never been over 37, so we are hoping to get it up in the low 30s. Dr. Buff said that I do have a lot of immature red blood cells which would also be indicative of a problem that has resolved itself.

The IVIg went well this time. The fantastic nurses up in the infusion center took great care of me, and went ahead and gave me the zofran (anti-nausea) before I even started the infusion. I then ordered my standard grilled cheese, french fries and chocolate chip cookies with lots of ketchup. Add a diet coke and I am in heaven. Well, not heaven, exactly, but I will take what I can get.

Thank you Jess- You can now subscribe to my blog!

Thanks to the help from my friend Jessica (in Guam), you can now subscribe to my blog. Every time I update the blog you will recieve an email......cool huh?

I am losing my mind

Oh my gosh.... I have been trying to attach a link to the site here so that everyone can just sign up and be updated whenever I add an entry. I have been working on this for at least 2 hours and I am going to throw the laptop across the room. Interesting. Doctors can stick me over and over again and grab pieces of bone out of my hip and tell me I could die from MG, and somehow the fact that I can't get this feed thing to work has made me lose my marbles. UGGG anyone who can help me, please send me an email for goodness sake!

Merry Christmas

Santa was very good to us all. The kids had a wonderful Christmas Eve and Day. Katherine was particularly enthralled with her new roller skates and Thomas was out of his mind thrilled with his new GeoTrax train set. Today we are all just laying low- both kids have fevers, so we are just relaxing. Of course, relaxing is not one of the things that I am good at, so I have anxiety just sitting here! But Jason got me a wonderful book called "talking hands" about a village where people use sign language regardless of whether they are Deaf or hearing. Hopefully I will get to read a little of that. Or I could possibly finish writing my Christmas cards- now that it is December 26th. Oops. Forgive me, I have had a few things on my plate!

So what has been on my plate? Well, as some of you might have guessed since I didn't write before Christmas, I did end up having the Bone Marrow Biopsy on Friday. My blood work was kind of "iffy", so we decided to go ahead with the test. The thought of waiting and not knowing any longer was just out of the question. That is certainly one of the hardest thing about this- waiting and still feeling lousy. I always thought Katherine was the impatient one around here... turns out I am kind of that way too! I actually don't feel all that bad, just getting weaker and weaker, but we had a pretty normal Christmas, and I don't think anyone would have ever known all that is going on, except for the little limp I have at the moment from the BMB. I don't really know what the test is going to tell us. The big thing is that we will find out if all these immunosuppressants have done anything really nasty to my bone marrow and have changed my ability to produce cells.

Everyone I spoke to before the test pretty much told me that it wasn't that bad... that the Lidocaine was the worst part, and then there was just a lot of pressure. Being that I am superwoman, I figured I would be just fine. Let me tell you... I did not feel just pressure. lol. I can think of about 9 million other things that I would like to do on the Friday before Christmas other than having a BMB. If you are looking for a fun activity to do in your spare time, this is NOT it. But it is over, and hopefully we will get some answers, so it will all be worth it. If I ever have to have another one, I will be much more prepared- it is a feeling unlike anything I have ever experienced, and I just wasn't ready for it, I guess. Oh well, I guess I am not superwoman after all. I suppose even superwoman could feel pain, though. Do you think she got PMS too?

Currently I am scheduled for IVIg again on Friday, and I will also be seeing the hemo/oncologist to find out the results of the biopsy. We are at least doing a fairly good job of keeping on top of the MG. I am still feeling fairly strong. If it weren't such a pain, risk, inconvenience to keep doing the IVIg forever, I guess I would do that. But it isn't realistic to keep going in for this all the time, at least not long term. Plus all it takes is a cold or infection to throw me into crisis. As you can imagine, I would prefer to avoid that at all costs. My Christmas wish, and hope for the New Year, is to find the source of the anemia, fix it, and get going on the chemo. And my wish for all of you is that you enjoy your families and friends. Life is so precious.

But you look so good!

My new thought whenever anyone says how great I look: How fantastic could I look if I hadn't been sick and taking every drug under the sun for the past 14 years. I am thinking I could be a super model by now. HA. Not that I want anyone to stop telling me I look good- I appreciate the thoughts very much.

I am glad that I waited to update everyone, because things were extremely complex, and there were theories flying all over the place. I think it might have been kind of concerning for all of you. And, quite frankly, I didn't feel like thinking about it for a while.

Jason and I met with the hematologist/oncologist last Tuesday, and he went ahead and drew MORE blood, if you can believe that. I swear, they must have filled up 10 viles. The hemo/onc is very nice, and more importantly, he is very thorough. Jason and I both got a good feeling from him and are looking forward to working with him.

The good thing is that the ruled out several very nasty virus' and blood disorders that could have been causing the anemia. At the moment, we are watching my blood counts very closely. I am scheduled for a bone marrow biopsy on Friday, but that might not happen if my numbers keep coming up. Yesterday was the first time they have risen in over 2 months! So I might be getting an early Christmas present and not need the biopsy. I will be in early Friday for tests, and then scheduled for the biopsy at 9:30. Keep your fingers crossed.

Last week I had an IVIg on Friday, and for the first time since I stopped the cyclosporin, I really feel like it helped. I am still pretty far from perfect, but I feel much better than I did. I am chopping at the bit to get going on the cytoxan. It is kind of amazing. I am still weak, and I feel it at night, but I am moving around like the energizer bunny during the day. Guess that is what oxygen to the brain will do for you. As always, I am doing my best to not over-do-it. That is a pretty tall order for someone with my personality and two little kids at Christmas time!

There is another thought on the anemia, and I went and saw my GYN yesterday to explore that. She did a biopsy to rule out cancer (which we are pretty certain it is NOT), and I am scheduled for something called an endometrial ablation at the beginning of January. I hope everyone can understand, but I will likely keep further information on that to myself. There are times when sharing all this information with everyone becomes too much for me- I feel exposed. that is really saying something for a woman who is constantly being poked and prodded by doctors and nurses. I don't know, there is just something odd about the whole world knowing when I get my period and things like that.

As always, thank you all for taking the time to check in on me, and thank you for your continued thoughts and prayers. I will do my very best to update the blog before Christmas- maybe after the events on Friday if I am up to it. Our family hopes that you are all having a wonderful holiday season.

Vampire Strikes Again

I had another 2 units of blood on Friday. IVIg on the previous Friday and Monday, appointment in Boston on Thursday and blood transfusion on Friday. This is all very complicated and hard to keep straight.

The appointment with Gorson went very well on Thursday. He is positive about the chemo and completely understands why I want to do the treatments up here instead of Boston. We were even able to voice some of our issues with not having been able to get a hold of him when I was in serious trouble and we were told that the person who was responsible for taking his calls has been let go- so that is good news. He was very clear with his current secretary that if I call she is to put me through "IMMEDIATELY"! Hopefully I won't be calling there in crisis again.

So the only hold up on the chemo now is the anemia. We have to find out why my red blood cells are only hanging around for 2 days instead of 120 like they are supposed to. I am not going to get into the possibilities. All I want is for it to be caused by the cyclosporin (called hemolytic anemia- from medication) and have it go away on it's own. The other possibilities are concerning, but I am not going to worry until there is something to worry about.

The plan this week is to go get more blood work done today (it is no wonder I keep needing transfusions- they keep taking all my blood away!), go see the hematologist/oncologist tomorrow and get another IVIg infusion on Friday assuming I can handle it. I am going to be going in for IVIg every 2 weeks (half dose) and then once a month, piggy-backed to the IVIg, I will get the cytoxan dose. So I will only be spending 2 days in the hospital a month, ideally. Then I have to go in regularly for blood work to make sure the cytoxan is working but I am not getting septic.

I will keep everyone posted. As for right now, I don't know much. It is a waiting game. Hang in there everyone. Happy shopping.