In My Weakness I Found Strength

You know every day this summer I got up and felt alone. I had no one there with me. At those moments where your thoughts and mind go--u know?  I'm in my room thinking and wondering when will this all end? Will this end? I did this transplant because God told me to & I hoped that with this would be the cure. Never did I think that the transplant process was not for my disease but for my self.

I put all my hopes, prayers, and will into this transplant being a success and curing me but in the midst of it all I've found that the transplant has cured me but not of my disease but of my self. I've always been such a driven person and used my situations as my push or start ups to life's challenges. How could I have forgotten that the biggest challenge of all was to be my inner will. For so long I have relied on people, friends, family to be my launching point but God has been teaching me over and over again with it all going over my head until now. My launching point needs to be God. And needs to be me. In the end when things are at its finest of times and hardest of times family won't be there nor will my friends but my Savior--Eloi (will be there) and I alone will be there.

All my life all I've wanted was to feel wanted, loved, appreciated like anyone else would but all my life God has put me in situations where I've felt unloved, unappreciated,or unwanted. Why? I guess you can ask God that but if you ask me then its because God wants my character, my core, my everything to be nothing but humbled. Having this disease and living with the pains that it presents is the hardest. I've been learning and continue to learn that God definitely has a plan for me, a plan to prosper me and not to harm me but to give me a sense of direction and drive that will get me through life, it's challenges and the surprises that come on its way. I can no longer rely on friends or family to be my point of direction. God is teaching me that He alone is my point of direction and that as life goes on family and friends may disappoint me but Never will My God disappoint me. He is my ROCK & my everlasting strength so No, this transplant was not a bone marrow transplant but God's ways of spiritually transplanting my fears and concerns with his spirit of peace and serenity.

You know going through this transplant process has been so much more than an eye opener. It has opened up my life and the people in it. I've learned that some people are there for a season and others for the long haul. Though I wish those that were here for the season were here for the long haul I am truly grateful for the time that God has put you in my life. I pray that another season comes and that when it does we'll both be in a place where we can maybe be there for one another for the long haul.

My strength comes at the time of my life when no one else is there to help--it's just God & me and we lock arm in arm and walk right through whatever the challenges that present itself.

I've learned that though I do need friends and family by my side I can survive without them. If they can survive without me then I can survive without them and our lives can move on as it is destined to. Though I wish we could survive together. I've learned that survival means you need to live your life. So go and live the Life that God has called you to. Whatever the needs and desires God will provide--just trust in him and it will be okay--but in every single weakness look long and hard because there lies the strength you never thought existed.

Interview with National Heart, Lung, and Blood Institute (NHLBI)

I was invited with a few core others to do an interview with the Acting Director Dr. Shurin of The National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH). It was a short interview but informative. The meeting consisted of about three or four representatives of the sickle cell community who posed questions pertaining to sickle cell disease and the strides NHLBI is making to further research, awareness, education & the policies that will make them all happen.

*Has there been a surveillance project identifying the needs of the sickle cell population?

Dr. Shurin’s response: a Survelance Project has been established to develop guidelines to assure the needs of the sickle cell community are met. The details of those guidelines have not yet been published but will be once everything is established.

Here is a snippet of what NHLBI is doing with this project:
(follow this link to read the rest of the article, http://www.nih.gov/news/health/feb2010/nhlbi-18.htm)

NHLBI, CDC Launch Surveillance and Research Program for Inherited Blood Diseases
Six States to Study Sickle Cell Disease and Thalassemias in National Pilot Project
Medical researchers are developing a new surveillance system to determine the number of patients diagnosed with a family of inherited blood disorders known as hemoglobinopathies, including sickle cell disease, thalassemias, and hemoglobin E disease.
The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health is funding the four-year pilot project, which will involve the Centers for Disease Control and Prevention and six state health departments, to create ways to learn more about the extent of hemoglobinopathies in the United States.
… The research will also help describe the demographic characteristics of individuals with these conditions as well as their geographic distribution. Researchers will also examine the existing health care resources available for patients with hemoglobinopathies.

---This Surveillance is key to identifying where patients are, what may be lacking in that area and how we can measure


*How is prioritizing since this is an old disease but there doesn’t seem to be an urgency unlike with other disease?

Dr. Shurin’s response: We do need more research however; the reimbursement level is low for people to be treated & tried in these clinical trials. Congress is important to keep the pressure on & not just on the physician’s. Sickle Cell Disease Guidelines which aim at helping make SCD a priority. What the NHLBI Has Done Up to Now

Additional Information I found on the topic:


2008 new structure and innovations in SCD program
In March 2008, after a rigorous program assessment, extensive public input, and advice from the National Heart Lung and Blood Advisory Committee, the NHLBI announced a comprehensive and innovative restructuring of its research SCD program. As a result, the NHLBI is moving forward with the following innovations to its SCD portfolio:
• Basic science: Support for basic research will be expanded through funding of investigator-initiated grant applications and through NHLBI-initiated RFAs focused on the pathophysiology of SCD, the biology of pain in SCD, fetal hemoglobin switching, and genetic modifiers of disease expression and progression.
• Translational and clinical research: The NHLBI reconfigured the Comprehensive Sickle Cell Center (CSCC) program into a Basic and Translational Research Program (BTRP) with dedicated training components.
• Participation in clinical research: The scope of clinical research trials will be broadened to allow a greater number of people with SCD to participate in NIH-sponsored clinical research trials.
• Community outreach: In partnership with the Sickle Cell Disease Association of America and other patient advocacy groups and professional organizations, the NHLBI will develop evidence-based guidelines for the care of people with SCD across the lifespan that can be used by health care practitioners throughout the world.
• New resources for medical care: The NHLBI is in the process of creating resources that will improve the medical care that is provided to individuals living with sickle cell disease.

2009 workshop on awareness and educational needs of SCD community

In September 2009, the NHLBI held a workshop to help inform NHLBI program staff of the awareness and educational needs that the sickle cell community would like to see addressed on a national scale - the SCD Awareness and Education Campaign Strategy Development Workshop. This workshop brought together individuals with sickle cell disease, community based organizations that serve the sickle cell population and representatives from the health care community. The goals were to determine where there are gaps in sickle cell awareness and education, what approaches could be taken to help close these gaps, and what partners can help the NHLBI address the health communication needs of the sickle cell community.

2009 - present
The result of all these deliberations is the current major effort at NHLBI in leading the development of a set of evidence-based guidelines for the management of sickle cell disease. The guidelines will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guidelines will also be valuable to hematology specialists and their patients. The process also will identify areas where additional research is needed to obtain evidence that can inform practice
*Do enough people with sickle cell anemia participate in the clinical studies available to help aide in its success?
There is an issue with having minorities participate in clinical studies which are needed to further research success. Volunteers can participate in studies by visiting: http://clinicaltrials.gov/ct2/results?term=sickle+cell+anemia


*Who is involved with putting together these guidelines? Are any sickle cell patients involved in speaking up about the needs of the community from the patient’s perspective and with insights only sickle cell patients can give?

Dr. Shurin’s response: the table of people involved in this project consists of mainly administrators however; an employee associated with the project has sickle cell and can add the patient perspective.


*In asking this question I was hoping to hear that mainly different walks were involved with putting the guidelines together namely, physicians, nurses, administrators, patients, family members of SC patients, social workers that work with the SC population, etc. However, that was not the case. My hope is that in the end the guidelines truly cover the vast majority of problems, needs, and issues sickle cell patients face. When they become available & I read them, know that I’ll share my views on them. I look forward to your comments on them as well.

I did ask: Do you know if new steps are taken to help ER’s restructure the way they treat & care for SC patients ie. Waiting time, pain management?


Dr. Schurin's response: SC patients will need to speak to their hospital administrators and work together on making those changes. It’s difficult to work on this issue as a whole because each hospital runs differently & have different policies so the more effective means would be to work with the hospital social worker who advocates for you. That would make a load of difference with the administrators of the hospital.

What can be done to create a greater pool of donors in the blood bank for Bone Marrow Transplant?

Dr. Shurin's response: By making this none to your readers that there is a need. The more people donate the better pool of donors there will be for transplants.

I had other questions like, why there have been so many Sickle Cell Center closings; How to better educate doctors and nurses that work in the ER’s. However, we weren’t able to get to those. I want to encourage my readers to not only become aware of the issues presented here but to stand up and be apart of the solution. We can start “together” by encouraging those we know to donate to the bone marrow bank, volunteer for those clinical studies & holding the administrators in your varying hospitals accountable--to take notice of the needs of SC patients. We can have success but we need to not only rely on institutions like NIH or NHLBI but hold ourselves accountable as well.

Join me in the fight.

Trust

It's amazing to me how hard it is to find a doctor who is truly invested in your care and overall well-being. I've seen so many doctors-- I couldn't even give a number to the amount of doctors I've seen. When it comes to my care I am very involved. You'd think many would be involved in their care but most patients just go along with whatever the doctor says without really asking questions or voicing concerns. My approach to my care is that of trust, communication, and dialogue.

Trust to me goes both ways. I need the trust of my physician so that I can get the best possible care. If my physician doesn't trust me then there's limitation to understanding and believing what I share with them about my health. For instance, when I share what I believe is affecting my pain--if my doctor doesn't listen/trust me then no matter what I say the doctor will dismiss my concerns and not take into account my insight into my health. Then there's my trust in my doctor. Trusting in my doctor is the key for me in feeling comfortable. If I trust my doctor then I know that the doctor has my best interest at heart.

Having open communication with both my physicians and nurses means making sure that all the doctors and nurses involved are on the same page. During one of my hospitalizations I was put on a specific medication by one doctor in the morning but by afternoon another doctor decided to remove me from that medication. The next day the doctor who initially had me placed on that drug asked me what happened since he was unaware that a change had been made. I was left having to explain to him that another physician did not feel as though the medication I was placed on was helping me so I was taken off that drug. Not long after--I was placed back on that medication. I shouldn't have been put in that situation and I shouldn't have been compromised like I was. Sudden changes like that can have an adverse effect therefore pushing any progress I had back (which means increased pain).

As a result of this experience I've been very adamant with all my physicians involved about communication so that such a thing does not happen again. Now, before any changes are made I ask to make sure that all parties are not only aware of upcoming changes but are in agreement on the best plan of action for my health. Aside from it being important for the nurses and doctors to be on the same page I continuously advocate that I be made aware of any and all changes to my medications, treatment, tests etc. so that I can understand the reasoning behind such changes and so that I can voice concerns that may arise. When it comes to sickle cell anemia many in the health care system agree that we the patient know our bodies better than some physicians. The best doctors that I work with are the ones that don't pretend to have all the answers but are the ones that are humble enough to admit that I go through this all the time and I know my body better than they do. The doctors that ask what do you think, what dosage should I start with, what works best for you, are the best because its not about pretenses but about quality of care and pain management. In the same breathe the best patients are the ones that admit that they don't have all the answers and are willing to work with their physician. It is a collaborative effort treating sickle cell anemia and no one person has all the answers. That is why I play such an integral role in my care. From knowing why a certain blood test is taken to the dosage of a medication--I make sure that I am aware of what is entering and leaving my body. If I don't take my health seriously then who else will? If I don't fight to be heard then who endures all the pain? If the doctor makes all the decisions with no input from the patient then who lives with the ramifications? The answer to all of these questions and many more is, I do!

Whenever I'm placed on a new drug that is unknown to me I do research until I am completely comfortable & knowledgeable about that drug. This is my life. I take it very seriously. I want to encourage you to do the same and make sure that you are a part of your treatment & care. Upon being discharged from the hospital during one visit I was discharged on a new drug that I've never heard of and so I began my research. When the doctor came in to do their discharge summary I had a lot of questions pertaining to that drug & the physician shared how impressed she was with my diligence. It didn't even occur to me that that was what I was doing until she said that. So it got me thinking and it encouraged me to share with you all how important it is not to be a "yes" man when it comes to your health. Many people treat doctors like God-whatever they say goes. If you have a question, ask it. If you have some hesitations then voice it. If your physician doesn't want to work with you then maybe it's time to start looking for someone who'll want to hear those questions & concerns because they should want the best for you. You are your best advocate so Advocate!

I Am Not My Hair.

I went through several days of chemo. For the first week, it was twice a day at 10am & 2pm to be exact. I handled it really well, so well that I though--ok I can handle this and it's not as scary as I thought it would be. After the first week I still had my hair in place so I thought maybe I won't loose all my hair and instead all that I may encounter would be some thinning at the most (but I was told that the chemo has a delayed reaction so I may not get the affects till later).

Then I began my second phase of chemo (which I was unaware of at the time--was a very potent chemo) according to my nurse, this chemo intimidates even a veteran cancer patient who undergoes continuous chemo treatments. Now this set of chemo had one that ran for 48hrs straight and another which I received at 10am for two days straight. It was a pretty immediate effect for me. Not long after they ran I began to feel extremely fatigued and beat up as though I was "run over by a bus" is how one nurse put it. I could barely keep up with what was going on around me or do my normal activities such as go for walks and do my day to day stuff that was important to building up my strength and maintaining my spirits so that the whole process doesn't take hold of me and keep me down. At this point my spirits did begin to go down and it was harder than ever to even get out of bed let alone think of going for a walk or going to the game room to keep my spirits up. One of the nurse technicians did pull me aside and gave me a sort of pep talk, reminding me that each time I pull myself out of bed and do something--anything that pushes my recovery closer and closer and builds my spirits up more and more will make it easier to then get out of bed. She reminded me that though it is normal & exactly what all Bone MArrow Transplant (BMT) patients go through I can't give in and dwell in that hole that is ever so tempting to stay in. Not long after this needed pep talk even though I felt like road-kill I decided to pick to my feet and go for a needed walk. Though it was difficult pushing myself, it was rewarding because I did feel a bit stronger and lighter in spirit.

Around this same time was when my scalp became very sensitive to touch and even as I rested my head on a pillow my head would ache. Then I noticed my hair was beginning to thin and soon noticed more and more hair coming out on my comb. The eye opening experience was when I was washing my hair and all I could feel was all this scratchy thing around my neck and ears only to look down at the drain to see all of my hair caked all around me. At this point I was using a face towel to was my hair instead of vigorously washing with my hands and nails because of how sensitive my scalp had become. Though I knew my hair would fall out, experiencing it and seeing all my hair on the floor and all over my face towel is another thing. I found myself getting a bit emotional seeing the final product in the mirror where minutes before I had the normal me with a full head of normal hair no longer there. Now all that remains are fuzzy hair patches throughout my head. Over the next couple of days those fuzzy patches were more balding than fuzzy patches.

The next thing for me to do is to get a wig. My mother was going to purchase one for me but the bone marrow unit's social worker shared that they will purchase the wig for me. She provided me with a catalog to look through and choose from. It's hard picking a wig because I have never worn a wig before so its a weird thing for me to do but many woman wear wigs so it should be fine. I think my trepidation comes from fear of looking like I have a dead carcass on my head. I want the wig to look like I have my normal hear. I don't want to look fake in any way but there are good options in the catalog I have and I can only hope to choose the right one that will fit me and look great on me. Until the wig comes in I've just been wearing a hat and using scarves to keep from getting chills because my scalp has been getting allot of breeze lately, lol. Once I get the wig you'll see my new but hopefully natural look where you'll hopefully question whether or not I even have a wig on. Until then I'm left thinking of that song that INdia Arie sang named I Am Not My Hair which is so true in its lyrics. This is only a temporary occurrence and in about 6 months all my hair will grow back. Nurses have shared that many patients have different hair grow back in and most times the hair that grows in is better. So prayerfully I get an even more beautiful head of hair in the upcoming months.

A New Look.

Before starting the bone marrow transplant I wanted to cut my hair in preparation for the chemotherapy & radiation I will receive knowing I would loose my hair anyway. From literature that I read it said that my scalp will become very sensitive and if I were to have longer hair it would be a more irritating than if I were to have short hair. To make the whole process easier on my head and on me emotionally I decided to cut off all of my hair or as much hair as I could prior to treatment. I mentioned emotionally because I can only imagine to effect seeing my longer hair falling out all around me.

The pictures below are a kind of video gallery of the whole barber experience. My brother decided to join me in getting a hair cut and a good friend Michelle was willing to be a friend and support by being by my side as I journal this process.

Anti--Climatic Bone Marrow Transplant (BMT)

My Brother & I (My Donor & I) the day of holding the infamous Bone Marrow!!!

All of the work it takes to get to the transplant itself is so much that by the time I was ready for the transplant nothing major truly took place for the transplant itself. The Chemotherapy and radiation that I received was ten times more intense than the transplant itself.

After receiving radiation I felt really zapped and weak, and I began to have a headache which progressed to a migraine. I could not get anything for the headache/migraine because Ibuprofen is counteractive to the transplant drugs I receive and unlucky for me: Tylenol does absolutely nothing for my headaches. So all I could do was ice my head and try my best to relax.

After getting the last bought of chemotherapy and radiation I was given I.V. Imuno-suppressants and then the next day all that took place for the transplant was a small bag of bone-marrow which was white in color hung as an I.V. would and went into my body in less than twenty minutes.

The nurses below were the best of the best & were with me throught the bone-marrow process & continue to be with me through it.

The Best Nurses holding my bone Marrow!!!

Bone Marrow Transplant (BMT) has Begun

It's been 15 days now and 4 out of those five days I've been on two separate Chemo regimines. I'm taking it well so far but I'm told it'll all hit me in a day or two since it has a delayed reaction. As the first ever Sickle Cell Patient undergoing this procedure in this hospital it is a huge deal to them and to me. I hope they get what they need and vis-versa as we make history together.

I've been very open about living with this disease because I feel like someone has to be. Someone needs to speak up so people can understand what we as Sickle Cell patients go through. I could just send a post about Sickle Cell Anemia and leave it at that but putting a face, a life in the forefront will make a much better impact on people hearts and encourage them to learn more and more about Sickle Cell Anemia. Sorry this paragraph was a bit of a side note but a much needed one.

Though I've handled the chemo well there has been some affects like: 102 fever, a metallic taste in my mouth, and weakness. I know it seems like a lot but what I mean by I'm handling it well is that, I've not let it weigh me down, I'm walking around the Bone-Marrow Unit (BMT) unit, my spirits are up and I'm holding my food down so far. As a result of the fever I have I've been put on I.V. antibiotics as a precaution to possibly having bacteria. They took some blood cultures to determine whether or not I do have bacteria or something else. The results so far came back negative but it is monitored over a couple of days so I hope that the first go around -->being negative is a sign for the next 'round of results.

The second round of chemotherapy has been the worst. The intensity is allot more and its affect on me is 2 folds. My body is beyond weak and fatigued, it feels like lead is in place of my bones. I have begun to loose my body hair and my scalp has started to feel tender to the touch. Since my white blood cell counts are now at Zero I have to be very careful for mouth sores. To prevent mouth sores I must wash my mouth out with salt water after every meal & snack. If not then I will get a mouth full of sores and be unable to eat let alone drink. Once my white count begins to rise I won't have to worry about the mouth sores. I do have to worry about bleeding out since my platelets are also low and since they are low my blood is unable to clot or glue together-- leaving me susceptible to bleeding out.

The chemotherapy is what brought my white blood cells, hemoglobin, and platelets down in order to undergo the transplant. Throughout the chemotherapy the nurses have to watch out that my white count goes to zero, my hemoglobin stays above 10 and my platelets stay above 20. By the time the transplant comes my white count will be zero, my hemoglobin 10, and platelets 20. If my hemoglobin goes below 10 I get a blood transfusion (of which I've had two) , and if my platelet goes below 20 I get a platelet transfusion (of which I basically end up getting every day due to the effect of the chemotherapy).

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