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).