August 19, Day of Hope

August 19th is a day to break down the walls of society that keep pregnancy, infant and child loss a hush hush subject. People view the death of a baby as just a sad thing that happened. These babies that die are not sad things that happen. They are people. Much loved and wanted children. They are brothers, sisters, nieces, nephews, grandsons and granddaughters. August 19th is about openly speaking about these children and celebrating their short lives before their journey to the hands of God.



For those unaware, I have suffered 5 miscarriages, and 1 stillborn.

Miscarriages:

1 in 2007
1 in 2008 
 1 in 2009 
1 in 2010
 1 in 2011

Stillborn:
Kayleigh-Marie Faith, May 2008, 20 weeks gestation.

Yes, these are all children. Precious children, all loved and wanted. That is why it is important to celebrate such a day. Celebrate their life's. Even more so, because their with the Lord, and no amount of mourning can make you miss them any less. That is why it is so important to celebrate this day. To stop the stigma of "hush hush" on the babies death. Sure, talking about it does not help, or make it hurt any less, but they should be celebrated and rejoiced, because there is not a moment they don't pop into your memory.

I love all of children, whether known, or unknown, whether male or female. Their in the Lords home. I celebrate and rejoice. I remember. Until I meet them one day again.

Slacking....

I've been slacking this month with charting. Probably due to my schedule being all messed up and stress.

Alex lost his job at Wal-Mart, which makes the second job lost in six months. He did get re-hired at another place, Game-Stop, but Wal-Mart still owes him his last check, and unemployment owes him a portion of income too.

Its been stress between bills, my health, and other things. I am hoping that when we go to Dragon*Con in 2 weeks, stress won't exist. But we shall see.

As far as my chart goes, its been doing some interesting things this month compared to the end of last month. I have to wonder if the Metformin is what has done it, but also have to wonder if my hormones are evening out or not.

Wierd huh? This is what it currently looks like.


As far as other health issues go... I'm avoiding my Urodynamic Testing like a cat on crack... something about having a catheter shoved up there, is bothersome to me.... I will make a separate post about my MRI-MRV because that's a separate issue all together...

Hematology - Oncology Trip


Wanted to update!

Braving Boston was... interesting. lol. So many people, and South Station is HUGEEEE. I found my way from the bus terminal to the train, to take the train from South Station to MGH was interesting. I kept getting lost! People were not kidding that MGH was huge, and Boston either. lol. I am used to huge cities, but Boston is VERY HUGE.

So I get to my appointment, and apparently mixed up days. I was not happy with myself at that point. The appointment was on 8-9 and I was thinking today was the 9th.

So I got there expecting to be told to leave and come back tomorrow, but INSTEAD the lady at the front desk called Dr Fogerty and Dr Fogerty, was teaching across town giving a lecture... So Dr Fogerty remembered I was coming from NH and traveling 2.5 hours by bus, and told her medical assistant to have me sit and wait, she would still see me ON A DAY SHE HAD NO PATIENTS!

So I sit and wait, the Dr comes in around 1.5 hours after I arrive, BUT I had no problem waiting BECAUSE most doctors offices would have told me to leave and come back. Nope, not at Mass General. She STILL saw me, and she did BETTER than any other Hematologist-Oncologist I have seen.


So here is what I got from today's discussion. Dr Fogerty reviewed my medical records I had faxed.

1. It was determined after she reviewed my medical records, that because I have only had 1 clotting event in my life, and that I have FVL, that she wanted to test my levels. She ran another D-Dimer, and explained to me that if my D-dimer comes back at say 600 and normal is under 400, that 600 is my baseline, and that if I got a Dimer of 1000, than they would be concerned and not want to take me off coumadin. She did mention based on my INR and medical records that if the D Dimer comes back normal, she wants to take me off of the Coumadin because it has been showing signs that I have been thinning too much, and too much thinning is not good. She explained that most people will only get one clotting event in their life with FVL, but that if they have multiple, that is when they would be on Coumadin for life.

2. She explained that she was going to run a check for something called "antiphospolipoid" antibodies. Her reasoning behind this is because I have had 5 miscarriages. 4 of which were before 10 weeks, which is before the placental veins were developed. The fifth, which was after 11 weeks, was of concern, because in most woman that have miscarriages after 11 weeks, the clots form in the placental veins, and it has been shown that FVL can cause this, BUT she explained that she ultimately thinks that my PCOS/Hormonal Imbalances/Having an IUD removed (I got pregnant that time on the IUD) was what caused the miscarriage. She explained to me the reason the body rejects, or miscarries is because it detects that something is not right chromosomal wise, and that the body recognizes that the child-to-be was not going to be able to sustain life, and so it aborts it. While hearing this was hard, she explained to me that nine times out of ten, the issue at hand was my PCOS and the hormonal imbalances, because the hormones given in pregnancy are given to your fetus first, and if given too many can cause all kinds of defects.

3. She explained that I should use Compression Socks, and start using them. She said they will help with varicose veins. She said that Compression Socks can help "milk" the blood back up to my heart and not put me at risk of DVT's because I work from home. She said I should get up and walk around every 2-3 hours for at-least 10 minutes, and if that is not possible, to move my feet around and do exercises. She explained to me the difference between a clot, and a charlie horse pain, meaning that an overworked muscle, you could massage and stretch and the pain go away, and that with a DVT, the pain remains. She explained it would not occur in 2 muscles at the same time, and that was RARE to happen.

4. She said I need to start drinking on average 60-80fl oz of water a day, and that I need to walk more.

5. She explained for long trips (flying, on a bus ect) that she wants me to try to get up and walk about, but that if I find my anxiety is too much on these trips, she would give an injection of Heparin. She explained that long trips can put me at risk of clotting again.

6. She explained she was running tests to check for the other thrombosis screenings to ensure that I did not have any of those. She explained if those came back positive, the course of action would be Coumadin, and seeing her regularly.

7. She explained that if I do become pregnant again, that I will need to be on Heparin post-partnum for 6-8 weeks after, and possibly during pregnancy to prevent a miscarriage from occurring after 10+ weeks, and she explained that if I miscarry with no other complications (lack of treatment in pcos, and removing birth control) past 11 weeks, it shows my body does not have a good tolerance to pregnancy, and that is when I would need to be on Lovonox during pregnancy. She explained that Heparin/Coumadin is okay to take when breastfeeding.

8. She explained that being over weight has a lot to do with clotting, but that she doesn't want to tell her patients hey loose weight because they would never come back (LOL) and I told her I was appreciative of that.

9. She explained that she doesn't want to encourage pregnancy, at the present time, because of my Acute Promylocytic Leukemia, but that once remission is determined that she is all for it, but advised me of the risks. She did tell me it would not be easy. I understood.

10. Lastly, she explained that hopefully today would be my last dosage of chemo, and that hopefully between chemo and the ATRA I take, I will be induced into remission, but that she would have to wait until blood counts came back, and would discuss those with me when they came back.

She is going to be seeing me again on September 13th 2012 at 9am. I honestly am so glad I didn't give up, and finally got a doctor at a hospital that cares. There is no doubt in my mind that Mass General is the #1 Hospital in the country. My Advice to everyone, is to not give up, and be an advocate of your health. If you sense something is off, with the doctor your seeing, than get another one...

Aunt Flow and Her Visits....

Merely just want to start this blog off with a vent, about how pregnancy symptoms and visits with aunt flow show the same signs. So annoying. Just when I get the guts and hopes that I was pregnant on the second cycle, aunt flow decided to show her face.

Aunt Flow Came to visit me on 11DPO, which was what would have been CD32/CD1. She visited from Aug 2 - Aug 6th. It was quite different this time around because I did not have severe cramping, but it was regular flow. I do NOT think it was/is implantation bleeding, because it was regular for 4 days...  plus my BBT Temps are rising.

I must say that I am happy my body seems to be regulating itself, but it just stinks because you get into that 2WW and than boom, she pays her visit with either a vengeance, or something your not hoping for.


This is my cycle chart thus far. Looks fairly normal, it is supposed to rise and then when ovulation is imminent, than it should drop, and rise suddenly again.

Going to be interesting to see what happens. I did stop taking Metformin and Fertibella all together, because I am going to be participating in a PCOS and Genetics Study through Mass General Hospital. But I will post about that in my next blog post.

*baby dust to all*