Reclaiming My Life.....

Hello good people! I cannot believe time has gone by so fast. I have settled well in my new job and continue to negotiate my health and my new normal. Who can forget that tumultuous year that just passed? I could hardly wait to get back to a normal life again. But, what is normal anyway? The more days go by, the more I find myself speaking about this cancer journey in the past tense about what was quite an ordeal. I hate cancer because of what I went through, and I hate cancer because it continues to take many lives. I hate cancer period! But most of all, I hate the positive attitude idea that "Oh you can beat this/Oh you did beat this!" that people tend to throw around without much thought. And recently I have met people who think they know so much about grief and its related losses. Dear God! why do people always think they hold answers to everything? But, then I remembered, "to think you know already is the logic of fools!" It is hard for people to understand that positive thoughts are not enough when you embark on this seemingly unending journey. If you ask me, it is impossible to put any space in between yourself and the disease. Yeah my hair is gradually growing back and my energy will eventually come back but, until the day I die, I will always live with the fear that this cancer will recur. Thats the thing about cancer, things are never ruled out forever. But, for now all is well and thats good enough for me.

Once I was able to start working, I thought I had marked the end of my journey with Hodgkins Lymphoma. But, the truth is I am learning day by day that I just embarked on another leg of the trip. This trip I just embarked on is called adjusting to life as someone in partial remission. In many ways, it definitely is not like the life I had before or envisioned because it is very different. I prefer to call it my new normal for many reasons. I am healing but don't feel 100%. Of course, I would like my daily routine to return to the way it was before my illness but that is a tall order. So, I am learning to set new expectations and priorities for myself while redefining my life. I am learning to be kind to myself and focusing on what I can do - just pacing myself. Most of all, I am learning to embrace the future!

First off, cumulative chronic fatigue is the biggest issue that confronts me. Just extreme tiredness and lack of energy. Usually it comes on suddenly not because I have been working hard but because it is this overwhelming spell that engulfs you leaving you speechless and helpless.. By the way, sleep does not relieve it. You still feel tired despite an excellent night's rest. I can only describe this fatigue as paralyzing and debilitating. My oncologist calls it "cancer fatigue"and could go on for a year or longer. Say what??? Like I need to hear some issues to deal with when you think the journey is coming to an end. Fatigue has become my constant reminder of my cancer. Before this whole journey I never comprehended the difference between fatigue and tiredness. I have used them interchangeably in the past. But, now I do know the difference between the two concepts. Everyone gets tired especially after a hard day's work and we know why we are tired. But, for me, this fatigue is not that precise. I feel a daily lack of energy, an unusual or excessive whole body acute tiredness which cannot be relieved by sleep. So, what that means is, this fatigue does have a profound negative impact on my ability to function normally and my quality of life does not always feel in sync.

In spite of the above, I have instituted helpful changes and new choices in my new normal. Apart from being kind to myself, I found eating healthy and regular exercise life changing. I care about what I eat and strive to buy organic food as much as possible.  Oh, how I wish I was back home where everything is organic! Now, I read the ingredients on food ensuring that I dont pollute my body with unnecessary junk, rampant steroids found in the North American chicken that look abnormally huge for anyone's liking. The list includes fruits that seem to never go bad because they are rubbed with pesticide preservatives. Where do I shop you must be wondering. There are several farmer's markets around the city and it does not hurt to make a trip and just do the right thing. On the other hand, I have found regular moderate exercise to decrease the feeling of fatigue. After exercising I feel this burst of energy which I cannot explain. Exercise helps me feel energetic and stay active. It is my way of getting rid of tension in a most positive way.

So, until then you better stay tuned because I am back with a vengeance!

Relax Everyone Things are now Moving

Relax everyone, I am so happy to share with you that things are beginning to move and fast. Despite the aches and pains, I am not complaining! I am sure everyone has been wondering what the hell happened since I have not blogged since ???? What happened? How did I abandon you all like that?  Even, I was asking myself the same question. Well, the truth is, I spent the whole weekend sleeping because of this fatigue that is debilitating. I kept dragging myself in and out of bed only to use the washroom because my chest continues to hurt and makes it difficult to sit upright for long periods. But, I am feeling much better than last week. This situation has taught me not to live in nostalgia but live in the moment and appreciate every single day because I realize looking back at all the weekend aches strains my neck and inhibits my progression. Today I went in to meet my oncologist for the first time at one of the best cancer hospitals. I never imagined in my lifetime I would be entering this cancer hospital. Its funny how we always think its them not us. Here I am, who knew? After registering we sat in this huge waiting room and as you look around you realize there are so many people with all sorts of cancers. This place looks completely different from where I have been going since May.  Like the British say, it looks "posh" but depressing. I even forgot about my own cancer for a while or that I was one of them. I must add, I feel blessed to have Tinashe by my side because this is not a place you want to go alone for sure. Every appointment just brings me to tears. It feels like just re-living the same nightmare over and over again except this is not a dream but my reality. I guess, that is the part that makes me tear up every time.

Anyway, this waiting room was exceptionally clean and sterile for good reason which you will appreciate later. In the middle of this amazement, someone came around and started serving juice and cookies to everyone. The coffee was just there for every one's fancy. Not that I care for a cup of coffee - I have a thing for Cappuccino or a Macchiato from Starbucks. That was something being availed eats and drinks! A first for me anyway!  Anyhow, I appreciated this gesture but, I was too focused on eating the sushi Tinashe had gotten for me. It don't matter how ill I am - I love some sushi! The room was full of both men and women but what caught my eye was that most of the patients are much older. Some looked very ill and bald while some appeared to be doing well. I felt very young and for a moment thought wow! my age group is not represented. And that fleeting thought of why me did cross my mind but, I quickly remembered that God does not give us more than we can handle. I remembered Paul's words in Corinthians 10:13 explicitly states, "God is faithful and he will not let you be tested beyond your strength but with your testing he will also provide the way out that you may be able to endure it". That scripture stopped me in my tracks and I looked beyond my self-centeredness to the pain and severe testing of others right before my eyes were enduring. Anyway, the rest was not very eventful apart from hearing from the doctor the reality and gravity of my situation. We went over what to expect, CT scan, bone marrow biopsy, staging, baseline tests then treatment. All appointments have already been scheduled in advance which is great. Based on the tests done so far, ABVD, a chemotherapy regimen will be used. It is the first line treatment of Hodgkins lymphoma and may be used in combination with radiation. Will tell you more later about this because I have to share with you the most frightening thing that the doctor told me. He said, I am going to lose my hair in a few weeks. I know what you are all thinking, "it will grow again".

Please don't even say it or think it! Just allow me to start grieving for the loss of my hair in two weeks which I know will be traumatic given the pep talk that I got today from the doctor. Its like he knows the impact on our psyche as women! I guess the guy has experience with how we are attached to our hair. I am thinking, coping is fine but how do you embrace going bald, losing eyebrows, lashes and all the hair everywhere? Did you hear that bald? I am going bald and I know for sure that is going to make me cry because my hair is so pretty. I have sister locs y'all - these tiny little locs that are off the chart. I will take a picture and show you before I shave my head. Its inevitable, I mean the hair loss. Maybe, I will throw a Pity Party for myself and ask Tinashe to bake some cupcakes for the sad event and invite a couple of people. Anyway, just discussing what to expect in terms of treatment gave me perspective of this roller coaster I have embarked on. I also had my first staging tests today which will be followed by other tests the following two weeks. One of the tests that is giving me the jitters is the bone marrow test - removal of tissue from the bone marrow. Ouch! I am so terrified about that one because the doc said it will be painful.

Anyway, before I forget, I must say, I fell in love with my oncologist and I can tell y'all that such a connection with a doctor makes this ride much easier. He is warm, friendly, compassionate and everything you asked for in your prayers. I can see the heaven opening up for me already... for good things to come. He gave me a book on lymphoma and more literature on the treatment and what to expect. After all my tests, I am seeing my doctor in two weeks, I guess that is the end of September when I complete the tests. He advised that is when I am beginning treatment.  Just saying those words feels so good and relieving. I told you earlier about the discussion, that it was very intense. One of the critical things the doctor talked about was to ensure that we be diligent with contact precautionary measures to avoid any infection in whatever type or form. I have to wash my hands constantly and limiting contact with other people when I begin treatment. And, as usual Tinashe was making me laugh as we headed home. She said to me, "Mom, as your caregiver, I am going to make a big precautionary poster for the house urging visitors to wear masks or stay away if they are sick or recovering from coughs or colds and no hugging. She says, I don't trust anyone so, I will be screening each and every person".  She just cracks me up and I am thinking, what am I going to do, I love hugs. But, I guess we have to adhere in order for me to be well. This is it for now people, I promise I will not keep you in suspense again. I promise to write at least two lines even when I am not well because I believe God sent me some strong shoes for these stony paths. Stay tuned......

Sometimes its not about Winning its about Healing...

Obviously, I have not blogged since yesterday. I spent most of the day sleeping. The reason being that, I have not been feeling too great. But, I promise that I will be back soon with a vengeance because today I woke up thinking that its not about winning this battle its about healing for me. That way, I can choose how I want to feel each day. So far, nothing major to report, just the extreme chest pains and fatigue that seem to persist. Now, I am trying to read," Chronic Fatigue Syndrome for Dummies" with the hope of getting some tips on how to manage. Now I understand the difference between feeling tired and fatigue. They are completely two different things. This fatigue is paralyzing and impacting my daily functioning. No, don't worry, I am fatigued but I can still care for myself and when I feel up to it I still engage in my favourite past-time  - cooking. Anyway, today, I went into the hospital this morning just to do a mere CT scan which I thought would take at least an hour but turned into a nightmare. Guess what, I spent the whole day at the hospital from 8am to 6pm. So, I got home feeling beat, I slept from 7pm now its almost 12 midnight. After the hospital visit, my partner suggested we go out and eat but I did not have the energy. He tried to entice me because he knows my love for lobster and crab legs particularly the ones at this nice restaurant called "The Red Lobster" but it did not work. I was feeling so exhausted, Can you believe I was told not to eat anything before the CT scan? Yeah, I was feeling hungry or is it famished? And realized that missing food for the whole day doesn't kill - In fact, eating three meals a day is a luxury if you ask me. I ended up being moved from one room to the next and being hooked up to this pick line and more blood work, drinking this awful stuff to allow for a CT Scan where you are then injected this horrible dye into your body. Yes, you feel your whole body burning and the stuff comes into your mouth like toxic fumes. With your hands above your head you are glided into this machine that looks like a doughnut. Then someone, speaks to you giving instructions from another room on a microphone. The dye is injected into the vein while the other is swallowed in liquid form. After asking why, I was advised this helps the organs or tissue to show up more clearly. No, its not that bad just uncomfortable.

After the whole process, I went on a diarrhea spree... very embarrassing - I guess its the dye. Whatever man! I hate cancer if you ask me...Its like it invades your body does whatever it wants with you. Its alright I will keep looking at the silver lining under this dark cloud.  I spent the whole day in the hospital today not a a pleasant experience at all. But, as always, the nurses and doctors ever so pleasant and make you feel better just the way they handle you. Today, I also got the news  that I am still on the waiting list to see the oncologist in order to begin the "Staging Process".  This disease has taught me to be patient. I know some of you are wondering why is it taking so long?  Yeah, I am not the only one with cancer people.... a wait list means there are more of us out there. Please don't ask that question because you will only make me feel more agitated and anxious. Just continue to be patient with me. For those who don't know, Staging is the most important part of understanding the growth patterns and aggressiveness of the cancer cells. Stages of  Hodgkin's lymphoma range from Stage I through to Stage IV and categorized based on where the cancer is found (see the earlier posting with diagram showing lymphatic system) or spread including symptoms presented by patient. Staging determines if the cancer cells have spread to other parts of the body. Staging is also used to help the doctor plan the treatment based on whether the lymphoma is low grade or moderate growth or high grade. Those terms are self explanatory. It sounds like going to the butcher or super market to buy meat based on the grade. Remember back home we used to buy meat based on grade??? First being the best and so on... Ha ha ha that is really something. Truth be told,  I feel so exhausted and so burnt out. But, will be back soon.  Just need some shut eye for now.  I just need to get my energy back and yeah I need that funny bone while I wait.....

By the way, for all those trying to call me on the phone, I appreciate the sentiments. But, for now I don't have the energy or courage to speak on the phone it takes every little thing that I have. In fact, it has become one of the most challenging and exhausting tasks that I have removed from my to-do-list.  I love y'all and hope you understand I need time before I am able to converse on the phone. You know how hard it is when everyone is asking the same question, "How are you doing? or Oh, I am sorry"  Of course, I am not doing well. I am trying my best to put the best foot forward and all your good thoughts and messages are lifting me up. I appreciate.  However, the pity words just make me break down and go back to square one. Pity turns me into putty and I cannot be putty right now. I am trying to turn this difficulty into an opportunity for greater things to come; stepping stones to greater experience. Yes, I may appear strong but the truth is, I am still crying despite that I am holding on to the wings of hope. Its just that, I realize that life without hope is meaningless. So I an concentrating on what is good in every encounter in this journey so that my life can be filled with gratitude. It is for these reasons that I decided to communicate with y'all through this blog. Again, thank y'all for all the messages they are my anchor and wind beneath my wings. Keep them flowing..   For now, stay tuned  I promised, I will keep y'all updated.  I appreciate each and every one of you with every bone in my body you are are keeping me strong because at times, our own light goes out and is rekindled by sparks from others which you are all doing. Thanks y'all and stay tuned.....

What is Hodgkin's Lymphoma?

According to the Lymphoma Foundation of Canada,Hodgkin's Lymphoma is a cancer of the lymphatic system in which there is progressive (but painless) enlargement of lymph tissue followed by enlargement of the spleen and liver. Hodgkin's Lymphoma is very rare and only one percent of all types of cancer turn out to be Hodgkin's according to the United States National Institute of Health. Those statistics freak me out and set me off into an over-thinking mode. I guess its normal given the enormity of this disease.(see image of body's lymphatic system). In addition, the John Hopkins Clinic state that the defining characteristics of lymphoma are cells in the lymphatic tissues that grow rapidly and uncontrollably. The cancer may spread to other organs, such as lungs, liver and bone marrow. But, the good news is with prompt detection prognosis is good.  Well, that's uplifting.