In Vitro Fertilization Finalization

I finally finished the two week invasion of IVF treatment. Man, giving myself those shots was not easy at first but when you have to do something it becomes normal. I don't know how those that suffer with diabetes handle it. I'm doing this treatment not by choice but by necessity. Because I'll be undergoing a bone-marrow transplant I'll be getting chemotherapy & radiation leading to me not being able to have children. So in order to still have my own children I was given this great opportunity to store my own eggs for the future. I'm so grateful that I will still be able to have children with the man I fall in love with and marry.

I had to give myself two separate shots the first week then it grew to three shots a day for about three days then four shots and finally the day before my egg removal (10in all) I took one end of the cycle shot. The process was weird for me because getting an injection is nothing new to me since I get them all the time dealing with this disease but to have to do it myself was the game changer I had to get used to. I would first wash my hands with anti-bacterial soap and them get the syringes and medications out. Then depending on the dosage I would draw into the needle the amount needed, find a spot in my lower abdomen or upper thigh and inject. I'm not going to lie, injecting myself would sting at times and the syringes would be really full making it longer to inject myself.

I noticed that over time I had begun to get fluid retention, hand & feet swelling (as though I were pregnant). It's a surreal experience that I find had to explain. The main part was finding a donor and thinking through all the characteristics I'm looking for. Height, hair color, ethnicity, etc. All these things you wouldn't normally be thinking off but I find myself having to.

The morning of my egg retrieval was horrible because I was in an enormous amount of pain from my sickle cell anemia and left the emergency room to run about 2hrs away to get the procedure done. After the fact though I couldn't help but think in terms of: my child is on a petri dish waiting for me. Wow. But the injecting myself and going into the doctors office every three days to do an ultra sound and to test my levels to determine the dosage I inject was now all finally over!

Now I can move forward with the transplant without fear and worry that I can't have children. I'm now open to just getting through the transplant and recovering!

My Brother, Fola.

I have two brother's Fola (2yrs younger) and Ayo (7yrs younger). Yes, I'm the only girl! Growing up my brother's and I were extremely close. We were best friends but something happened on the way to change that. As we hit our adolescents we basically grew apart. Growing up in my household was hard (I could share my whole sob story but I won't).

My childhood was a bad one--leaving my family, more specifically my brother's and I to endure allot. In doing so my brother Fola dealt with things differently which led to our growing apart. My youngest brother Ayo and I though have been able to maintain that close knit bond that we developed in our youth. Over the years I've tried to get back that brother, sister, friend bond with my brother Fola but you can't go back in time and I can't take away the struggles that led us to where we are today.

When I was looking for a donor I thought beyond logic and I thought the brother I have the closest relationship (Ayo) would beyond a doubt be the match I so desperately needed. But to my surprise the name that came from my doctor wasn't Ayo but Fola and what she said next blew me away! Apparently, all they needed for me to find a match was 50% but my brother Fola was 100% match and 100% usually takes place with twins of whom my brother and I are not. So, I'm first thrown aback by which brother is my match and thankful I have a match at all but even more flabbergasted that Fola is a 100% match.

I know that there are no coincidences so it's definitely God at work and I've seen him at work in my brother and I's lives since finding out that he was the match. Since finding out he was a match, I do believe that Fola and I have gotten closer and that it was God's design to use this experience to not only strengthen our relationship but to reconnect us on a deeper level and to more importantly strengthen him as an individual.

Fola deciding without hesitation to do the transplant really touched me because I really wasn't sure what his decision would be but he has jumped at any and every opportunity to take tests, travel for blood-work, and he has opened himself to risks. So I write this blog in honor to my younger brother Fola who is in a major way saving my life. With the frequency and level of pain crises that I go through and at such a young age doctors have suggested that my quality of life would get worse and I may endure several organ failures and even death. This transplant is the only answer both the doctors and I have to the infinite number of questions my level of illness seems to bring up.

I am thankful that my brother Fola and I have more conversations. I'm grateful that upon finishing tests needed as a donor and heading back to New York that my brother now stops to encourage me that if I were to need anything at all I should call him. I'm truly grateful that my brother now out of the blue will call me just to see how I am and check up on my treatment when hospitalized. I am really and truly grateful that my brother Fola and I are no longer strangers in the same family but are growing together now rather than apart as we did years ago.

I want to encourage all of you to work on those relationships that were severed and meant allot to you because if you don't you will only continue to miss out on the love and friendship that individual can bring. I know for my brother and I, it took some time and it took my health reaching the end of its rope to begin bridging and rebuilding over that gap between us. It will take time but the important thing is that we're both working on it. I encourage you to do the same.

Radiation/Chemo Therapy 4.4.11

Today was my radiation appointment. This appointment was in preparation for the radiation I get upon admission on 4.22.11. So to prepare for 4.22.11 I was called into the radiation rm where I was asked to step into a chair. The chair was secured to the wall with allot of devices/contraptions (reminded me of the chair used with death penalty inmates). As soon as i sat down the nurses began to strap me in place. They began with a strap that had a cup for my chin which was drawn across my chin & belted in (going from rt to lft). Next they put each of my arms into slings and then a glass plate was fastened across the front of me to the chair. To get a better understanding of what the chair looks like you should refer to the first image from the left, above.

The purpose of using this chair is to make sure patients cannot move so that the proper measurements can be made. Once I was done Dr. Shi entered and began to draw on me making two oval like circles with plastic adhesions outlining the ovals throughout. You can see a picture of one of those ovals in the pictures provided in the black & white above.

When I get my radiation therapy I will be sitting in the chair secured. The device that looks like an x-ray machine in the above photos will point towards me emitting a surge of radiation. I was supposed to get several days of radiation and a couple days of chemotherapy but a change was made where I will get only a day of radiation & several more days of chemotherapy (2wks total).

I am a bit nervous about getting radiation but feel better knowing that the therapy will not be as intense as it was previously supposed to be. The radiation I was going to get before the change was supposed to really give my body a beating according to my Dr. I'm hoping that with the decrease my body will recover better from the treatment. What I am nervous about now is the chemotherapy I'll be receiving for two weeks. I have never undergone chemo. All I know about chemo is what I've heard and it's not a fun experience at all.

Within those two weeks of chemo I will consistently get a day or two break every couple of days so that my body can strengthen itself for the next round. Losing my hair due to this treatment I know will be difficult for me. There's a big difference between cutting ones hair and having ones hair fall out due to treatment. Yes, I anticipate that this whole process will be a difficult one but all of these added sufferings that I am soon to take head on--are for a higher purpose/end result unlike the cosmetic result I was going for when I purposely cut my hair.

I hope that many of you will see the depths of which we as sickle cell anemia patients are willing to go through to gain some sort of normality, some sort of balance. I hope & pray that the end result out-shadow the difficulties I may face during this whole process. Please keep me in your prayers because I need every single prayer I can get. I would be more than grateful if you could put in prayer requests at your church, Thank You!

Drum Roll Plzzzz!

OK, so I had my appointment with my bone marrow doctor this week Wednesday as I mentioned in my previous blog where I asked for all your prayers. I want to thank every single person who prayed for me. God has answered our prayers and my transplant is a go!!! I know that it is because of God & your prayers that everything is now clear and there are no problems with the hospital or my insurance.

Upon arriving at the Dr.'s office I had to draw some blood before meeting with her (typical prior to the office visits). What was different this time was that the blood being drawn was an enormous amount. As you can see below, they drew 21 vials of blood. As soon as I saw all those vials my mind immediately starting turning, thinking the only reason she would have this amount of blood work drawn from me is if she was updating my tests for the transplant.

*In a prior visit My Dr. did tell me that until the insurance details were worked out many of the tests that I had done for the prior transplant date of December 10th would need to be done over when it gets closer to my new transplant date.

As quickly as those thoughts came into my head it left because I once again made the decision to leave everything at God's feet. I kept having to surrender things the whole morning because I wanted my heart & spirit to be in the right place.

After giving a boat-load of blood I checked in and waited for the Dr. in the examination room. As soon as she walked in she grabs something that I didn't recognize until later and tells me we are going to set a date. As soon as she spoke those words I realized that what she had grabbed was a calendar & without even realizing my actions, I jumped off the exam table & gave her a hug getting a bit emotional.


So, WOW, Yes this is really happening. God has granted me this rare & exciting opportunity. The Dr. broke down my schedule as follows: I will be admitted into the hospital in the week of the 18th (either the 21st or 22nd of April). Upon admission I will begin my radiation & chemotherapy for a period of 4days. The 5th day will be my day of rest from the radiation/chemotherapy.
On the 6th day more chemo./rad. followed by two days of rest and three final days of chemo. & radiation. Finally, after all of that, on May 4th the bone marrow/stem cells will be transplanted into me. In order to monitor me, I will remain in the hospital for an additional 4-6wks. After breaking down the schedule & halfway out the door Dr. Filicko turned back to give me a big hug--sharing in the joy & excitement of moving forward. I'm on a journey and will have to take a back seat to whatever may come my way (good/bad/indifferent, the lesson being learned is patience, humility, & surrender). I rejoice from hearing this news and would like to ask for your continued prayers since the more intensive part has yet to begin.

Please Pray for Me!

I have an appointment Wednesday with my bone marrow doctor and I just want to ask everyone to please pray that she will tell me that everything has been cleared with my insurance and that we can move forward with doing the transplant. I also have documentation from my insurance stating their approval for payment of my getting a transplant. So please, also pray that the documentation that I provide will put everything over the top and make things go by smoothly.

I look forward to finding out what God's plan is for this whole process. Please add to your prayers that God uses this transplant to cure me of my disease, which is the point of this whole process. Thank You Very Much!


Until then--the transplant~>To Be Continued...

in Transit

It seemed that before turning 2011 that I'd be recuperating from my transplant but something went wrong. Just less than two weeks before my transplant my bone marrow doctor sits me down and tells me it can't happen due to discrepancies with my insurance. The thing is that I've learned since then that my insurance hasn't denied me coverage or refused to allow me to do the transplant. In fact, I appreciate so much how they have tried to convince the hospital and my doctor that I am totally covered.

This has been one of the hardest things I've had to go through in my life. Since chosen to do the transplant I was told not to get hospitalized much since it would prevent me from doing the transplant. Why? Because it would show that I'm too sick to do the transplant. Which is weird since it is because I'm so sick I need to do the transplant. I have done everything humanely and beyond--possible to stay out of the hospital that I even wonder how I've been able to endure all the pain at home. The delay with the transplant with no apparent date in sight to be transplanted I've not succeeded recently in staying out of the hospital. I feel like I've jump over hurdles to get approved for the transplant and now I'm being left to rot.

I've been consumed by this whole process and I had to stop myself because it was seriously becoming too much. I felt like I was running around with my head cut of trying to prove to the hospital that I wasn't denied at all. I'm emailing, calling, visiting, and it became an everyday thing to where I realized that I was trying to make this transplant happen. It's as though I finally woke up and realized that I didn't end up coming to Philly and finding these team of doctors on my own who then suggest the transplant giving me a lifetime of an opportunity. All this happened because God is looking out for me and has found a way to help me get close to living a normal life. Once I brought the focus back to God I just kind of let everything go. There is no way and absolutely nothing that I can do to make any of this happen. If it happens its because God deems it right for me.

I let the insurance company do what they do and the same with the hospital. That's really all I can and want to do. I can't wait to learn what my fate is though. I do have faith that if this transplant doesn't happen God will provide me another way to deal or live with the amount of pain I go through. God willing this transplant will happen and God willing I will be cured.

I do feel that it'll all come to a close soon so I ask for your prayers. Thank You.

The Thought Does Count

Seeing someone with an illness like Sickle Cell Anemia can be understandably intimidating to most. It's hard to know what to do or what to say. You want to help but it's hard to know how to which leaves you doing nothing which is not likely your intention but it is where you end up.
I just want to really Thank everyone that has pushed past the intimidation and the apparent fears and have really shown care and concern consistently and wholeheartedly. You know being sick as severely as I am for some random reason leaves me in one of two places at all times. I'm either in my room bedridden or in a hospital room strapped to IV's, heart monitor's, 24/7 pain medication pumped into me, and tests, more pain medications given round the clock by the nurses, specialists consulting you, doctors confused and searching for something, anything that can provide some kind of solution. With this barrage of things going on and more can you imagine the encouragement that comes from someone coming to visit you in the hospital in-spite of any fears of seeing you hooked up to any and everything in the room. Even just writting a note on my Facebook wall with thoughts of concern and love have left me feeling touched and thought of. I have an unbelievable example of someone who has not only been patient, caring, and thoughtful but has gone the extra mile again and again. This is someone that I've only just meet under a year but she has really been the support and friend that encourages me as I suffer through my pain. This person always calls just to say hi and when my phone died and she didn't hear from me she drove to my father's house and wrote a beautiful and touching note of her just saying she's thinking of me and hopes that I'm well--to not feel alone because I'm not.
Just stop and think. How inspiring is her heart? Thinking of how sick I am and unable to really do any of the normal things friends do whether it's going to the movies, or going out to dinner it seems I can no longer do but she doesn't resent or move on to another person who can really give to her what a normal friend could. Many times she'll call and I can't even call her back because of how much pain I'm in and how bedridden I am. Despite not being able to call her she doesn't resent or get upset or even understandably selfish but instead she just says that she understands and tries to do something so that we can hang out and encourage me. Many times she'll call just to pray. Her encouragement and unselfish heart truly touched me and I thought her heart was something to really Highlight for people to see and learn from because I know I am truly learning from this sister what it truly means to love and befriend as Jesus calls us to love and befriend one another. This sister's heart and example is what needs to be celebrated. Thank You for you Friendship and Heart Michelle. I hope that even in my illness and inability to give to you as I'd like that I can be a great friend to you as you've been to me. I thank you.



Love,

Day