How Cancer Healed Me - A young African American Male talks about cancer survivorship

The Ultimate Transplant

2009-04-24T23:32:00.002-04:00

Hello Everyone! This is Tony's wife and I just wanted to give you all an update. Tony made his ultimate transplant into heaven on Sunday, December 21, 2008 around 12 o'clock noon. Unfortunately, his health started rapidly declining right before Thanksgiving. We took a trip to North Carolina to visit his mother, and he had to be admitted in the hospital there and stay for 5 days. They said he had pneumonia. Once he was a little better, we returned back home and checked in with doctors regularly. He was at home for his last couple of weeks of his life, where he was at peace.

I want to thank you for all of your support, thoughts and prayers. Tony has been an inspiration to all of us and will be truly missed! I plan to keep this website up and running, so you are welcome to continue to write comments here and share with others. Our direct email is ddicwebdesigns@aol.com if you want to contact me directly. May God bless and keep you all!

Good News For My Mexican Friend

2008-11-17T01:59:00.002-05:00

I just received an e-mail from my friend who has Leukemia and lives in Mexico. She was having a tough time with her treatments. Now, after a little over 6 months she is cancer free! She is not in remission--which indicates there is a very low amount cancer in your system- She is cancer free. That means the doctors cannot find any trace of cancer in her body. I am so happy for her! At the end of her e-mail she wrote "Thanks Lord!"

Every Day is a New Experience

2008-11-07T16:59:00.004-05:00

My wife and I cannot plan too far ahead for anything, because we never know what is going to happen each day. We can plan a week ahead but not much longer than that. That is because you never know what might change these days. We try to keep a normal lifestyle though. I guess I say that to mention how sure I am that God answers prayers. I had a couple of things all going on at the same time. There seemed to be no solutions. I was provided different medicines. It did not seem like anything was going to work. I was loosing hope. I prayed about these things over and over again. I did not know what else I could do. Suddenly, things changed for the better all at the same time.

This experience is much like the stock market. I am not talking about our current stock market that it is in a crisis but the stock market in a good economy. One day the Dow is up, another day it is down. Sometimes it is up 100 points and other times it is 50 points down. I am up 100 points today. I feel better physically and emotionally. I am happy and full of joy.

I still have a throat issue. However, my doctor gave me a temporary solution for that, and it worked. Now I have graduated from sandwiches and water to anything I want. Now I can start getting my weight back on.

2008-11-06T17:29:00.001-05:00

I am feeling OK today. Working, school, and coming to the doctor is keeping me very busy. I feel much better. It used to be hard to stand or walk.

My throat issue has not changed. It is still extremely painful after swallowing food. There is one exception. I can eat peanut butter sandwiches, and I can drink water. I have tried other things but then I had to experience the pain.

2008-11-06T16:58:00.003-05:00

Puzzled

2008-10-31T20:23:00.000-04:00

I had an appointment to visit the outpatient center at the hospital. I had to get a transfusion so I knew it would be a long day. I have to get those every so often. I took a nap because they always give you Tylenol and Benadryl so you do not have an allergic reaction. Benadryl wipes me out.

Just as the transfusion was about to finish I woke up, but I kept my eyes closed. It was later so there was a different CA (nurses that generally check your temperature and blood pressure) sitting about 10 feet behind me. There was a young guy, who appeared to be in his early 20's cleaning off the bed and taking out the trash.

The CA (mind you my eyes are closed and they think I am sleep) gestured to the guy who was working on the bed. I do not know exactly what she did. Anyway, the guy said "He is a little thin" in a sarcastic and funny way. Then to electrify the brief joke session he said "Where did his parents go wrong." His finale was saying "He's a grown man there is no excuse for him being that skinny." He said it like he was outraged to make the joke more effective. The CA gave a light-hearted laugh and said "you crazy."

A few seconds later I opened my eyes. He was behind me changing a pillow case when he was cutting the jokes. He did not know whether my eyes were open or closed the whole time. When he passed he looked at me and noticed my eyes were open he left. By this time the CA got on the phone to call somebody. Just then one of the nurses came by and I asked her for the supervisor's name. I heard the conversation break between the CA and whoever she was talking to on her cell phone. About 30 seconds later she got up and left the area for about 10 minutes. Fortunately, for them I am not going to tell the supervisor about this. I do have all her information if I decide to change my mind.

I am puzzled. You have two adults who work in the cancer center. All kinds of cancer patients come through there everyday, and many of the cancer patients look different from the rest of us. After seeing all these different people wouldn't you be a little sensitive or at least numb to how people look?

I know why I have lost weight in the last couple weeks. I want to gain it back and eventually I will. I am glad that I am not so thin-skinned that I let it really get to me. I just found the whole situation puzzling.

Sunday Prayer

2008-10-28T12:31:00.000-04:00

On Sunday, my cousin Eve came by to spend some time with me. I was a little energy drained, but happy that she came to visit. We talked about this and that (We usually talk about christian politics, national politics and christian rappers amongst other things) and then we prayed. Even though it was my cousin visiting I was concerned about my image, but there was nothing I could do about it. I knew it was obvious that I lost a lot of weight, and this was before Ayanna's great haircut and mustache trim. Therefore, you could see all these little scraggly, uneven hairs poking out of my head.

Anyway, Eve prayed. It was different than some of the other prayers. She first prayed for healing, then she prayed that I feel better and that my family would be able to cope with my illness. It was a strong prayer. The prayer was so strong that when I came into the clinic today I got some interesting news. I found out that my condition (the leukemia) has improved. Suddenly, things changed in my favor for the first time in months. The doctors say it is the medicine I was taking. It finally began to really work after 5 weeks.

My obstacle now, is that my throat hurts. It hurts so much that it is hard to eat and drink. This is a side effect of the medicine. This is obviously not good for a skinny cancer survivor trying to gain lots of weight. Hopefully, we can get a solution to this as soon as possible. Unfortunately, I will have to add high calorie stuff to my diet until I get my weight back up.

35

2008-10-23T12:11:00.000-04:00

I used to take birthdays for granted, as I did health. Like having good health, another birthday was sort of a given. At least that is what I thought. I remember my 31st birthday. I remember saying it was just another day. It was just one of those insignificant birthdays. Besides, it was not 18, 21, 30 or 50 just 31.

My perspective on birthdays have truly changed. It does not have to be a round number or a "rights of passage" birthday to be significant. Yesterday, I celebrated my 35th birthday. This was my second birthday since my diagnosis. It was the most significant birthday ever because I made it another year. After my recent trip to the hospital, I was not sure if I would see it. I am blessed that I get to see every new day, especially my birthday.

Your Corner

2008-10-21T14:59:00.001-04:00

Cancer survivors are fighting for their lives everyday. There is something we are doing on a daily basis to try to beat it. It is like a boxing match - with you on one side, and the cancer on the other. Sometimes you get a good hit in, sometimes you miss. Maybe, you get a knockout blow and sometimes the cancer gets some good hits on you. It is a perpetual championship match.

There is something that every good boxer needs while fighting. Every good boxer has a good corner. Boxers don't win fights on their own. After each round, every fighter sits down in their corner and there is someone telling them what he/she should do to proceed. Maybe they should change something they did last time. Maybe they need some water or encouragement, to go back out there and fight. A boxer is nothing without his/her corner. After getting beat up, round after round he/she needs somebody with a different perspective.

I say all of that because I have a good corner. It is a tough fight, a tough opponent, and each round impacts you a different way. Most fighters are all beat up, but not me. I have a wife in my corner, who I know truly loves me and has supported me in many ways for a long time. She is the one giving me encouragement and nourishment. So I have the emotional and physical strength to go and fight another round. I have friends, family, prayer groups and even people I do not know in my corner telling me to go back out there, even when I feel like I can't. I have nurses and doctors in my corner. But most of all, I have Jesus in my corner. He has the best strategies. He alerts me to all of my opponents openings and weak spots. He tells me when I should duck, swing or take a couple of hits. Lastly, He will be the only one there if the fight ends in my loss. I don't plan to take an "L". I could have done that two weeks ago. So, here I am back in the ring and thankful for my corner.

Recovering

2008-10-21T14:44:00.001-04:00

So much has happened in the last couple of weeks that I do not know what to post. I will try to be brief.

On October 8th I was hospitalized. My catheter got infected. It was sending germs all throughout my body. Luckily, I made it to the hospital that night. My blood pressure was so low and my temperature was so high (and that is just the half) that I would have been in big trouble if I did not get care. The nurses and doctors did an outstanding job. I am now home recovering.

I am still a little tired. I gained 43 pounds in the hospital in one week and lost 40 pounds out of the hospital the next week. My legs looked like tree trunks and my ankles were so swollen. You could not see the bone. I could not wear sneakers. Now I am skinny again. What a life!

I am doing much better than I was two weeks ago, and on Wednesday I have my 35th birthday to celebrate.

Transplant Update

2008-10-05T15:28:00.002-04:00

The transplant update is, there is no transplant scheduled for right now. I may have to wait a few months. The doctors think at this point it is more of a risk than a benefit right now. Transplants are really tricky. It is very important for your body to be prepared for such a big adjustment to your body. They make you sicker than any chemo, plus you have the concern of graft vs. host disease, that can potentially kill you and you run a risk of your counts not recovering. Counts are your red blood cells that ultimately give you energy, your platelets that heal you and your neutrophils that fight off disease.

Why Change Your Diet and Lifestyle Now

2008-10-05T15:15:00.002-04:00

I am seriously considering changing my diet and lifestyle as my last post suggests. I have been doing a lot of research. I started changing my diet last week. But why? Modern medicine has the solution. There is still more chemo and new chemo to come. Although, my bone marrow transplant has been postponed, there is always a chance to do that in the future. That may be true in 60% 30% or 5% of the cases studied, but not 100%. Why not try.

God has given us everything we need to be healthy. Should we take it for granted? We take in foods we do not need, and then look to hospitals for help. Hospitals are full of trained, certified, well-qualified individuals that have solutions to many problems. Remember Polio. However, they do not have every solution. For those concerned, I am moving towards a strict diet, exercise and spirit-based approach to my disease. I am returning to work (part-time), and almost eliminating meat and cooked foods from my diet.

That sounds ambitious, but so was staying in the hospital for weeks hooked up to a machine that was pumping toxins in your blood stream and causing you to be weak, unattractive, and more sick than you were before going in the hospital. After all of that, you end up fighting the same disease again and going through the same process which lasts for months. I really have nothing to loose at this point and everything to gain.

Holistic Health

2008-09-30T09:25:00.001-04:00

I hate to dwell on a previous post about diet and cancer but I must for a second. First of all, I know these smart doctors and experts will assure you they have the cure for your disease. But do they always? I have learned in these many months that every person is different. Two people could have the very same cancer and one may survive with treatment and the other one will not. Why? The doctors cannot tell you. The doctors will tell you, that they cannot tell you. They work hard and long though to try to beat the odds. I have a great amount of respect for what they do. However, they do not always have the answers. They only can tell you that this treatment worked for "Joe" so it should work for "Jack."

Back to this holistic health hypothetical. Is it a last chance dash? A waste of time? Or better yet - is it a fluke to prey on struggling cancer patients? I do not know the answer to that, but it is worth a try. The doctors say, "Eat what you want" because now is not the time to think about eating healthy. My diagnosis and treatment requires people to consume lots of calories and lots of protein. I wonder if I employed the broccoli theory though; how would that impact my outcome?

All the research I have done on cancer survivors who did not undergo chemo, changed their diet and lifestyle drastically. Even, my stepfather who was diagnosed with stage 4 cancer in 1991 changed his diet and attitude and lived for another 10 years although, he lived a lifestyle prior to his diagnosis that was far from healthy. What did he do? Number 1, he stopped moping around. "Woe is me" gets you no where. He started working again after he retired, he walked to work and back instead of driving (it was about 5 city blocks), he ate better (I remember him eating fish but not much other meat), he joined a church, he stopped drinking (sometimes he got caught sipping, but that was occasional) and he believed he would live and not die. He eventually died of cancer, but not when the doctors predicted. He lived until he was in his late 60's and the prognosis was he would not see his 60th birthday.

Therefore, today marks the day of changing my lifestyle. I still disagree that my diet caused my cancer, but I am headed to the Barnes and Noble's to find books about how holistic health can help me live longer with cancer.

Caregivers

2008-09-26T11:19:00.001-04:00

I met this guy in the clinic last week and we have very similar circumstances. He has the same type of Leukemia I have and has relapsed as well. He has a 4 year old child and found out he had this disease when his second child was born. He is going into transplant a week after me. I think he will do well. He is in remission. We were talking about caregivers briefly. His wife was there with him. He says he does not eat the food, but has family members who will bring him food. His mother-in-law is a saint, he mentioned. She comes over to help his wife when he is in the hospital. We talked about how hard it is to be a caregiver.

Watching the person you love deteriorate is an awful thing to have to deal with. Caregivers need breaks, time to themselves away from all this pain. It is one of the hardest jobs. My mother-in-law is a saint as well. My mom tries to do the best she can although she is sick. If everything was OK with her, she would be here more. My Aunt Rose, Cousin Sheila, my Father-in-law have all been caregivers in one way or another. My cousin Inez, Ean and Eve have supported me. I have a sister-in-law who always reads my blog and supports my efforts. A neighbor found out I needed plenty of liquids and went to Sam's Club and dropped off about 60 bottled waters. My biggest caregiver is my wife. She has been with me through this day and night, week after week, month after month. Thank God for those people and anyone else I have not mentioned.

Untitled

2008-09-26T10:45:00.002-04:00

Things change every day with this disease. I really do not know how to start this entry. Today, is one on those days. I am taking this medication and the doctor has increased the dose pretty high. Generally, my attitude is positive. Today, I am just concerned. It is difficult for us cancer patients, because many of us do not have anyone to talk to. You do not want to scare anyone else, and most people, if they are honest, do not want to hear negative thoughts. Therefore, you are stuck in a corner somewhere, or laying on a bed hashing out all the possibilities yourself. Sometimes, you really do not want to talk to anyone about how you are really feeling.

Hopefully, I can make it to transplant, and the transplant is successful. There is a real chance that neither will happen. God has shown me miracle after miracle. I have made it through some impossible circumstances in these last 15 months and even before all of this sickness. I know it is His will to heal us.

I spoke to my mom yesterday on the phone. As mentioned before, she is undergoing treatment for a relapse (after 7 years) of breast cancer. I can tell that things are getting a little difficult for her, emotionally, although she did not say it. I love talking to my mom. She always knows the right thing to say to me. However, I rarely talk to her, if at all, about how I feel. Instead, I listen to her talk about her problems. I genuinely want to hear about it, because usually she is experiencing something I experienced and I can shed some light. For her age, and being alone I think she is doing outstanding. I would be living in or near her town if I was not sick, and it hurts so bad that I can not help. At least I can be an ear. We both pray for each other consistently.

Good Things to Say to Cancer Patients and Survivors

2008-09-24T16:24:00.000-04:00

I mentioned in an earlier blog about something that someone said to me about my cancer diagnosis. It really upset me because they basically said my diet caused my disease without knowing what my diet was.

Here are some good things people have said.

1. I love you and will try my best to support you and your family through this.
2. I am a 20 year Leukemia (or any other cancer) survivor, so there is hope.
3. I will pray for you and your family.
4. You seem to be doing reasonably well with all that you are going through.
5. Even though you are not working a full-time job, You are still a good father and husband.
6. What can I do to TRY to help.
7. My friend/cousin/brother etc. had the cancer you have about 4 years ago and they are now doing well and Cancer free.
8. I know having this disease and dealing with the treatment is difficult.
9. I applaud you trying to go to school and make money even through your treatment.
10. You have beat most of the odds.

Transplant Update

2008-09-18T09:19:00.001-04:00

I recieved some wonderful news today. After all this time, I actually have a schedule for my transplant. I meet with a social worker on Friday in between tests that begin at 8:40 in the morning and do not end until 4:00.

The tentative date is October 8th. They will start transplantation on October 16th. I guess I can kiss the notion good bye that I will spend my (35th) birthday away from the hospital but that is of secondary concern. My doctor, however, says he can get me out of the hospital in less than 30 days but we will see. If not, I may also miss Ayanna's birthday on the November 1st. I always like to try to do something nice for her.

I need to figure how I can get food, because I can no longer tolerate what the hospital brings to our rooms under those black domes. However, I am so grateful that finally, there is some real progress.

Prayer is essential. Hopefully, I have minimum amount of Graft vs. Host disease, my recovery is quick and the transplant extends my life many many many (30-50) years. I also pray that nothing gets in the way of moving forward. Hopefully, there is not an increase in disease, and I pass all of the preliminary tests with flying colors. It is always God's will through Jesus Christ to heal us and I trust and have faith that everything will work out for the best.

What is Your 1-10 Year Goal

2008-09-18T09:19:00.000-04:00

There is a reason why I was led to take classes this semester. In our Business/Design Link class one of our two professors gave us a project to do. He asked us to plan out our 1, 5 and 10 year goals. He asked us to include professional, financial, personal, spiritual etc. I love doing those things. It is not due until November 19, but I might be finished by the weekend. What is funny about all of this, is that for the past 15 months I have not really spent a lot of time planning the next 1, 5, and 10 years of my life. All I was concerned about was living. Would I make it through this treatment? Will I relapse? Will there be no more treatments for me if I relapse again? Will I make ever make it to transplant? Will the transplant fix me? Will I be able to walk my daughter Emma down the isle when she gets married? Who will attend my funeral if I do not make it? How will I give God the glory if I survive? These questions are the ones that permeate, not my career path. However, I feel really good about doing this type of planning. It gets me focused on the positive. It gets me focused on living. I am so happy I am not just sitting around but doing something.

These two classes are a blessing and I think it is intended for me to walk across the stage and switch my tassle this January. That will be such a proud day. It will have much more significance than if I was not battling disease. Thank God everything worked out for me to finally be on the path to getting my Masters.

Creatin/Transplant Update

2008-09-15T21:29:00.001-04:00

My creatin level was 1.2 today. This is a great improvement. Today, they began the tests needed for my transplant. On Friday I have a few more tests that have to be done and then if my health insurance agrees, I can move to transplant.

Upset, Just a Little

2008-09-15T20:53:00.002-04:00

I have been meaning to post something like this for a long time, but someone bought it to my attention today. One thing that really upsets, not just me, but many cancer patients is the person who seems to know the reason you have cancer. You know the "know it all" who has a professional degree in nothing but is the authority on sicknesses. They usually mean well. They think they are helping you, and they know they are right.

I understand the correlation between menopause medication and breast cancer, in some cases, and smoking and lung cancer. There is scientific research that supports those claims. However, there is no conclusive scientific evidence that links anything having to do with diet, lifestyle, environmental factors, and even heredity to Leukemia. However, you run into people who have the key to your sickness. They seem to be blood cancer experts.

Some say, you did not obey your parents so your days are now short, or you did not do God's will. Some may say you were breathing the wrong air. Others will say you did not exercise enough or you ate the wrong foods. Tell that to Lance Armstrong, the one of the many professional athletes who exercised and ate right and still got cancer. Unfortunately, what these lectures from lay persons suggests, is that "IT IS YOUR FAULT THAT YOU ARE SICK." WOW! If you die tomorrow. it is all your fault. That is a terrible thing to say to someone who is suffering.

People who have HIV/AIDS, or Herpes, did something to get their disease. Some may argue that it is not their fault, because they did not know their partner had this disease. To the contrary, people who have blood cancers (leukemia, lymphoma, myeloma) are not better than those who have AIDS, but we did not do anything to bring on this disease. I am sure if it was preventable, many of us would have taken the steps to do so.

Since I have been diagnosed, I have met all types of people. I have met older people, younger people, athletes, health nuts etc, who have or had cancer. Some with blood cancers others with many of the other 200 types of cancer that people get each year.

It is downright offensive and in terrible taste to tell someone, who is fighting for the thing most dear to them -their life- that somehow it is there fault because they ate too much of the wrong food or did not exercise enough. In fac,t it is more offensive because the person may not know that you have a much better diet than most people and you exercised regularly. Who are they to assume that your diet is bad? Besides, there are individuals who have had diets much worse than ours who do not have disease. Why are they not sick? What about a 1 year old leukemia patient? Did they overdose on bad foods? Most young leukemia patients have no evidence of hereditary disease. Someone should write a book on what not to say to cancer patients.

I guess my suggestion to those who feel like they have the answers to the question "how did I get sick?" is to make sure you are a professional and you have done the research to support your claims. I have read many professional journals that explain the causes of many types of cancer. Furthermore, if you have all the answers, save them for when the cancer patient has a full recovery, but don't blame the person for getting this ugly disease while they are struggling for their life!

Creatin

2008-09-11T13:03:00.001-04:00

My creatin level has been high. Creatin has to do with your kidney functions. Last week it was 2.0 and Friday it had gone down to only 1.9. 1.9 is higher than normal. One thing is for sure, and that is I do not need kidney problems.

In addition, I cannot move forward with kidney function problems. Over the weekend, I drank like a fish and even did intravenous hydration every night. When I came in on Monday, it had gone down to 1.5. My goal is for it to be less than 1.4. Hopefully, today I will get good news. Other than that there is not a whole lot going on. My professors were very understanding about my situation, which is great. I feel very well, I am not tired, or sick, I feel normal.

Now is the Time

2008-09-03T16:23:00.000-04:00

Today is the first day, of my last semester in graduate school. I must be crazy to think I can take on a full load and manage this hospital/clinic/side effects/transplant/family thing but as I see it; Now is the time.

Progress

2008-09-02T22:27:00.000-04:00

As promised here is my update. My doctor confirmed that we will be moving forward. They are planning to begin my transplant in about two weeks.

Crossroads

2008-09-01T14:30:00.001-04:00

I am at an interesting junction. This week, I find out if we are going to move forward to the cord blood transplant. I have been trying to get to this point for a long time. I will update this page when I find out what happens. Please stay in prayer for my family and I.

I am a little concerned. I spoke to my Aunt Rose over the weekend. We talked about the many blessings I have received. She reminded me that God did not bring me this far, to bring things to an end. My minister told me that it seems that I have always beat the odds.

On another note, Ayanna and I had a great weekend. We spent some quality time with each other on Saturday. Emma went to Kena and and Carlos' house on Sunday to play with Nariyah (her friend) and we had much fun.

Eyebrows

2008-08-26T00:54:00.000-04:00

I went to an event hosted by the Leukemia and Lymphoma Society and the Ulman Cancer Fund. It was an event for young cancer survivors ages 18-40. Although, the topic was about fitness, as usual at these events, people began telling their stories. Cancer patients and survivors love to tell their stories. One thing I noticed was many people were talking about their physical apperances. When you are young and at least moderately attractive, it hurts when people begin to look through you or at you in concern, or even disdain. When you look in the mirror and the person who is starring back at you is not recognizable, that is disturbing.

I am reminded about eyebrows. Just about every treatment has done one thing to make me look, as I see it, weird and sick. I usually loose my eyebrows and my eyelashes. People cannot seem to pinpoint at a glance, what makes you look weird and sick, but that is it. Many men have baldheads, but not too many are walking around with no eyebrows. So I am fortunate and blessed this time to have eyebrows and eyelashes. I lost the hair on my head but so what, at least I do not look weird and sick.

Emma My Caregiver

2008-08-15T08:03:00.002-04:00

Little 3-year old Emma is so sweet. Kids cannot contain thier excitement. If they are happy to see you, they tell you in a big way. Everytime she sees me, she screams "Daddy Daddy you are home!" Yesterday, I was in the car and we were dropping her off at school and she looked back at me and asked "Daddy are you going to be OK in there?" I said yes. The day before that, she was making an effort to cover her mouth everytime she coughed. She said that she did not want to make me sick, because she did not want me to have to go back to the hospital. I do not hide much from Emma, so last night I came upstairs to take my medicine. (I have to take two antibiotics (Zosyn and Vanco) intravenously trough my catherer). Emma went and got a pair of gloves and put them on. She said "Daddy I want to help so you can get better." (I have to flush my line with saline - a sterile solution of sodium chloride used to dilute medications or for intravenous therapy). So after I cleaned off the caps and attached it to my line, she pushed in the saline. I had to do it once more and she did it again. She was so happy that she was able to help me (getting emotional)... and I thought it was so sweet. I love her with all my heart (getting emotional again) and I will fight everyday, hour and minute to survive so I can be there for her...I have to go...

My Friend From Mexico

2008-08-15T07:59:00.000-04:00

I have a friend now from Mexico who also has Leukemia. Last I heard she was in the hospital. She is in her late teens, and gets support from some family and her boyfriend who lives far away. She told me that she was inspired by web site and blog. She also told me to stay strong. I e-mailed her back and told her I would continually pray for her. I hope that someone else who is reading this blog will pray for her too. She is having a difficult time with her treatments. Many people survive this disease and I pray on a regular basis that she is one that survives.

Hiding Out In The Basement

2008-08-10T01:37:00.002-04:00

Emma has suddenly come down with a cold. She is coughing all over the place and covering her mouth only 1 in 5 times. Since getting my last dose of good old chemotherapy, I am neutropenic
(meaning I do not have an immune system to fight off viruses and bacteria on my own). I need to spend most of my time in the basement and keep her upstairs. That is terrible. I want to give Emma big squeezes and play with her, but if I catch a cold, it could be worse than just having to go back to the hospital for 2 days.

The basement is not a bad place to be. I have a nice tv, comfy furniture, a half bath and more. My neutrophil counts are likely to stay down for another 3 weeks or so. After that, the chemo will wear off and my counts will come back up and things will be (somewhat) back to normal.

Happy (Somewhat) At Home

2008-08-09T13:18:00.000-04:00

I guess my prayers were answered. My temperature came down and stayed down after getting the antibiotics. They released me from the hospital on Thursday. I was only there for two days. It was not so bad. I am home and went with my daughter Emma and Ayanna to swim class. Ayanna looked like she was having more fun than Emma.

If You Have a Fever - You Have To Come Back

2008-08-06T17:05:00.001-04:00

God already knows what the future holds for us. It is up to us to keep our faith in him that He will see us through our trials.

After being released Friday, I was readmitted on Tuesday, because I was running a fever. It was nothing that I did, but the shiny new catheter
seemed to have gotten infected. I prayed that my temperature stays normal, so I do not have to get this thing removed, and I can be released soon. Turns out that a lot of Leukemia patients with these new catherers are getting infections from them.

I see it as another hurdle. Every race cannot be a straight-away. Believe me, I have had it a lot easier than many people.

Support

2008-08-06T16:38:00.001-04:00

I was touched by Ean and Inez (first cousins) keeping Emma last weekend. I just asked for Saturday afternnon to early Sunday, but they asked to keep her all day Sunday. I was released from the hospital on Friday. Saturday, Ayanna and I got to celebrate our 5th wedding anniversary. One day I will publish pictures to this blog. We had a wonderful time. It meant so much to me that we celebrated our marriage.

Our family would have had a hard time making it past these 14 months without support. Support has come in many ways. Some people have sent up wonderful prayers, sent money, found me clients etc. 14 months ago, my Aunt Rose got me into Johns Hopkins Hospital to get treated. She made dozens of phone calls from North Carolina to make sure that I was being treated in the best facility. She also told me about many social programs that were available. My mother-in-law Rachel Jackson would and will come up here in a drop of a hat, if we need her. All we have to do is call. In February, she went back and forth with me to IPOP (In Patient - Out Patient Clinic) sometimes sitting with me as I received transfusions for 6 hours or more. There have been a lot of other people in our family and community that continue to support us. My cousin Sheila wanted Emma to go to swim class. She arranged for 6 weeks of lessons. I did not get to go with her the last time, but I will try my best to get there next week.

16 Days

2008-07-31T20:52:00.002-04:00

There is one thing constant when going through this process and that constant is change. Oh what a difference a day makes. I was ready to have a long conversation with my new doctor about getting out of the hospital. Today, she came in and said that, since I was doing so well, I could leave tomorrow.

Family, friends and church members are to thank for their many prayers for better outcomes. It seems that the issue with the blasts is a non issue now, but I have to wait for results of my bone marrow biopsy to see if there has been any considerable change.

I still feel great, staying as active as I can, walking laps in the hospital and continuously praying for a better tomorrow. I know my daughter, Emma will be elated when she comes home, and sees me in the living room. The expression on her face are the things that keep me fighting to beat this disease.

15 Days

2008-07-30T22:50:00.001-04:00

I have been in the hospital for 15 days now. The only thing I am really concerned about is spending my 5th anniversary with my wife, Ayanna. I thought I might get out of here soon since I average about 18 days, but a new doctor took over rounds and she does not seem to be interested in me leaving early and doing the Inpatient/Outpatient thing while my counts are down. She did, however, say I may be able to get a day pass for my anniversary.

My recovery is awesome. THANK GOD. I have not had any fevers, major nausea and almost zero fatigue. What is better is I have an excellent appetite! I don't eat the hospital food anymore, so it is getting a little expensive. But maybe after I talk to my doctor about the many times I have been out of the hospital with my counts down for weeks (and did not get sick, she will have a change of heart.

I have been working on a web site that is almost complete called www.nearlyfreewebs.com. I will provide web design services for individuals and organizations that need it for the cost of hosting and domain name registration, if they cannot afford to build a website.

Back Again

2008-07-16T21:13:00.000-04:00

My blood test showed that I had some blasts. This means that I have to get some more chemotherapy before moving forward. I figured that would be the case. I am in the hospital now. They at least have wireless Internet here so I can get online freely which is great. I may have to be here for a few weeks though. Ayanna and I are veterans. We will make it through and we know what to expect.

Emma and Ayanna came to see me last night. Since it is not flu season, children are allowed in the room. She was rolling all around my hospital bed and playing with me. I talked to her about what was happening and she seemed to understand the gist of it.

Today, I had the worst bone marrow biopsy of my life. This was worse then the one I had the very first time I came in the hospital. I am still soar. Anyway I will keep this blog posted with the events that happen. I continue to pray and know that GOD is in control!

2008-07-10T21:38:00.003-04:00

Well it looks like they have found the cords needed for my transplant. I will meet with my doctor on Friday. I am happy to see that the ball is rolling. However, if there is something wrong, which is a possibility, the transplant may be delayed and I may just have to go to the hospital for chemotherapy.

Surviving Leukemia and Lymphoma and being as young as I am (34)has taken a toll on me but I appreciate things a lot more than I used to. The things that are really important, not things that have little value. Things like family and faith, helping and praying for people when they are down. My wife Ayanna, and I have had some great times these last few weeks. There has not been a time when I have been this full of energy and normal since May of last year.

Emma, my daughter, was down in the living room the other night. She had her books, toys and even the Backyardigans on television to keep her busy. I slipped upstairs to get some rest. The next thing I know I hear some tapping at the door. Of course it was Emma. She wanted to come in. I told her it was dark in my room, and I was laying down. 3 year olds usually try to get as far away from dark rooms and beds at nighttime as possible, but she came in the room and climbed in the bed with me. After a couple of minutes I asked "Don't you want to go downstairs in the light and play?" She said "No, I just want to be where you are, Daddy." I thought that was so sweet. She gave up all the excitement downstairs to come upstairs just to be where I was. She fell asleep about 15 minutes later and I put her in her room. These are those important moments that you remember for years and those that mean a lot more than what many see as important.

God has blessed our family. God is a healer and he has taken me a long way. Most of all I am truly blessed to have a wonderful family, access to health care and a relationship with Him.

http://www.howcancerhealedme.com

What Happened To The Perm?

2008-06-23T13:30:00.000-04:00

When my hair first started growing back, after the chemotherapy began to wear off, I went to the barber shop to get a haircut from my barber of about 5 years. He said; "What happened to your hair?" My father is Nigerian so that should give you an idea of what my hair texture was like. Anyway, my barber said that chemo is like a fresh perm kit. My hair was thin and almost straight.

A few weeks have passed and Mother Africa has yanked that "chemo perm" right out. It looks like I am back to my old hair texture.

Wait and Worry

2008-06-22T19:25:00.001-04:00

Today, I am in a bit of a slump. Although my disease is under control, it is recommended that I get a transplant. I feel good and healthy and I am enjoying every minute of being free from the hospital. However, I am in limbo right now. I do not know if I will get a transplant. Since I do not know I am stuck. I cannot really go on with my life because things could change and I may have to do another 30 day bid in the hospital.

The good thing is I can spend time with my family. I will start volunteering with the Leukemia and Lymphoma Society and I am finishing up my web site, How Cancer Healed Me.com.

I think about my disease every day. I am always wondering if it will come back. I am convinced that there was something divine - a higher power - that got me to this point. I feel like that higher power will continue to bless me. I wish, however, that I did not have to deal with so much uncertainty.

Father's Day

2008-06-16T18:48:00.001-04:00

I had a wonderful Father's Day weekend. We had a great Father's Day cookout and several out-of-town guests. Last Father's Day I wondered if I would be able to host another Father's Day Cookout. It has been a year and I am still alive and well. I will post pictures on AnthonyandAyanna.com.

Waiting

2008-06-06T15:17:00.000-04:00

June 6, 2008

It has now been about two months since I last left the hospital. According to my doctor I do not need any more chemotherapy for treatment. I am now waiting for a cord blood transplant. That may take a few more weeks. Great, since I am enjoying my time away from the hospital. Yesterday, a neighbor (Mrs. Ann) invited us to go to Jumpzone. Emma had a great time and so did I. I will post videos of that soon.