Feeling the Blues

Today I am all weepy and feeling crappy and sad. Last night was not so good. I spent the night throwing up and nothing much was coming out except bitter nasty bile since I have not been able to keep anything down. I was able to catch some sleep in the wee morning hours but woke up with terrible sores in my mouth and my tongue which hurt so bad. Its like there is fire in my mouth. I also have these severe stomach cramps that I just cannot deal with. (all expected chemo side effects). As I lay in my bed sick and worn out, I just felt so sad and lonely, I felt myself standing alone in solitude in this crowded world. I felt alienated from the world outside. My heart hurts and I feel confused as I feel lost in the cocoon of my own solitude. Sometimes in our lives you feel pain when a loved one chooses not to support you at your greatest time of need. All of sudden your world feels like its been torn apart and your world has changed. You ask yourself, How do I cope? How do I get past it? For sure these are really difficult questions for me which I don't have answers to yet.

I am sad because one person I care so much about and thought would have my back through thick and thin is not there for me anymore. She has made a decision that she does not want to be part of my journey anymore. One may say why at this time? But, I will not question the reasons or motives behind this untimely decision because don't they say you know who your true friends are when you are in the dumps? I know in my heart that there are things we all don't want to happen or people we think we cannot live without but I am realizing that we have to learn at some point to just let go. So, I cried today...... not because I miss her..... or even wanted her to be here telling me she is here and that I am going to be okay... I cried because I realized I am going to be alone but will be alright without her. So, I took my ass out of bed despite feeling crappy went shopping for some food since there was nothing to eat that I fancy in the house. As I pushed the cart, feeling all nervous about catching a bug, I could not believe that I am no longer the strong person that I was. I just felt so weak and all the energy seeping out my body and found myself asking for a place to sit because I almost passed out. After resting for a while I picked up some frozen fruits, gatorade and jello hoping that this will go down and not come out. I need to eat something. As I slowly pulled myself together and got to my car I was glad that I was able to make it after-all and drive myself home safely. Such is the irony of life, it takes sadness to know what happiness is.

Is There a Light at the end of the Dark Tunnel?

Aarrrggghhh!!!! where is the light at the end of this dark tunnel? Today is my crappy day. I woke up feeling so sick, after taking my temperature which I am supposed to monitor religiously I noticed that I had a fever of 38 degrees celsius. That freaked me out. I thought I am not supposed to feel these side effects so soon! My whole body was hurting my chest was hurting and I felt like it was on fire. I figured Oh! no! I was going to catch a cold. If I had a choice, I would not have left my bed at all. But, today I had to go for the Gallium scan part two. As I lay there under this huge doughnut machine, I closed my eyes to distract myself but it did not work. Anyway, the scan is a simple one but for me it felt like a monumental task given the way I was feeling. Did I mention they ask you to place your hands on your side then they wrap you up in a kind of like a straight jacket with tight velcro grips. And another velcro tight wrap is placed round your head to help you stay still. I thought what the heck! This looks someone going under the guillotine. Yeah, my brain runs wild like that sometimes. Oh well, I did let them know though that this was really creepy and can give a major anxiety attack. And they admitted I was not the first to say this but this test was important because it was part of Staging. I thought thanks for the reminder that I have cancer and I need this creepy scan. When I got home, I was feeling really really sick, my chest was tight and my whole body was hurting and I was feeling chills coupled with severe stomach cramps. I took my temperature again and noticed that I still had a fever - now it was 38.2 degrees celsius but there was no way I was going to an emergency - I was just too tired and too sick to even manage that. And who wants to be at the hospital at thanksgiving weekend. Not that I have anything planned. I may be sick but I am still thankful for many things in my life. I slept throughout the day and that seemed to help. However, when I woke up my chest was still hurting and I suddenly felt this burning sensation in my mouth - my tongue felt like it was on fire and painful to even open it. I threw up the soup that I had taken earlier and aargghh! I have not eaten in two days now. - just drinking lots of iced water. I feel so horrible! Tapfuma came home from school and he went and bought some baking soda. He made a solution and mixed it with salt which gave me temporary relief after swishing it in my mouth. Will continue to monitor the fever and the mouth sores. If the fever and the burning in my mouth continues I will go to the emergency. Until then... I need to go back to sleep and get some more rest.

First Chemo Update - The Battle begins in earnest

I had my first cycle of Chemotherapy yesterday and it was not as bad as I had envisioned. However, I was not able to blog because I was feeling unwell the kind of blaah you can't really put into words (not unexpected). I must say, even though I have gone through all the sessions about whats involved it feels like your memory simply defies logical reason and makes you imagine the worst. First, I have to say the number of people coming into the Chemo Day Care just amazed me. All the chairs were filled up and I must say it gave me pause to see the number of people coming in to get their fix of this toxic stuff. I just realized how I for one have often taken life for granted just assuming that every person you meet is healthy. Anyway, I was glad that my partner and Tinashe were there to hold both my hands and that was comforting. I have had people ask me how this chemo stuff happens. I have already mentioned my treatment is cocktail of drugs called ABVD. After registration, I proceeded to the treatment area comprised of several cubicles which accommodates two patients and one visitor per cubicle. The nurse was very pleasant and gave me again another lecture of what ABVD is and the blah blah blah side effects to expect before hooking me up to an IV pole. Then she wanted to know if I had taken the combination prescription of four different tablets supposed to be taken at home one hour before chemo starts.

Because ABVD causes nausea and vomiting, the nurse started the IV by administering some steroids and anti-nausea medicine through the drip slowly. Then when this was done, injected the bright red Adriamycin into the vein directly using a syringe.  Some people have called this the Red Devil for good reason because as it is going in you can actually taste it in your mouth. Nasty! She kept pausing periodically to make sure the drip was going through the vein and not the tissues. She said if the drugs miss the vein the complications can be devastating. Great! I thought but she was amazing she kept talking to me and telling me everything she was doing and what to expect when the medication was going in such as feeling heat as the medication is going through the veins. Everything went perfectly well. The four bags were administered separately starting with the A which looks like some bright red juice and gave me red pee after wards. This was followed by V then B and D which is added through the IV line and go in slowly...drip drip drip as you sit there and wait patiently. After the chemo treatment I felt okay until I got home. It was then I felt really queasy, run down and unwell. So, I slept and that made a difference except for an acute head ache that kept nagging and nausea. I have not been able to eat anything because of the persisting queasy feeling and nausea. All in all, I am doing good even better than I imagined in terms of the side effects. So far so good. Just stay tuned.......

Gallium Test

Today is one of those not so great days - I am just feeling so much pain in my back and the exhaustion is just killing me - I can't even blog. So, no more bitching about radioactive or nuclear material imaging tests. I will keep it brief. Here is the good news - remember yesterday my Oncologist was concerned about the cells in my chest and wanted this Gallium scan done urgently so that he can determine whats going on in there. So, I told you people, this guy is just amazing! After coming home feeling really down because I was not sure if this test was going to be done in a timely fashion, granted this is beyond my doctors' control, it happened sooner than I anticipated. To cut a long story short, I received a call this morning that the part one of this test had been scheduled for this afternoon. A Gallium scan is a nuclear medicine test that uses a special camera to take pictures of specific tissues in the body. This test involves at least two separate visits. So, my first visit today I received an injection of Gallium radioactive (a type of metal in a liquid form) intravenously. I will return for the second part 48 hours later which is Friday to have the scan done. The only interesting thing was the notice posted right in the tiny waiting room which reads, "If you will be crossing international borders in the near future be sure to inform your technologist". Well, apparently you need special documentation declaring your recent nuclear medicine test to avoid for instance, the homeland security nabbing you ha ha ha. Nuclear imaging test can trigger homeland security detectors. Wow!

The Anticipated Staging Results are Here!

Today was a big and eventful day! I got the results of all the numerous tests I had been doing all along. I am sure you will recall how anxious I have been to know how far the cancer had spread. Thank God! its Stage I - II and referred to as early stage lymphoma! Its funny that on receiving the news, I felt ambivalent. Just that state of having simultaneous, and unexplainable conflicting feelings. Suddenly, after learning the stage of my cancer I did not feel that excitement one would expect given I am a Stage II not a Stage IV - I know it could have been worse.  But, guess what, the struggle continues. Aluta Continua! Anyway, call me a cynic - I don't see the reason for celebration yet, because I am still inducted in the "Hall of Cancer" despite being in the early stages. It does not change the overwhelming emotions and fear of the unknown let alone the aches and pains. Don't get me wrong, I appreciate that it could have been worse but please, does that change my situation? Certainly not! I still feel crappy about this whole journey. Don't worry people, chemo is going to knock some sense into my head, so I am told. By the way, before I saw the oncologist, I had the good pleasure of meeting my pleasant oncology nurse/case manager who will be working with me and at my disposal 24/7. Of course, not literally. Well, we spent a good half hour doing the blah, blah, blah blah of chemo side effects and how I may need to purchase a children's very soft toothbrush because my mouth will become tender, sensitive and develop mouth sores the most feared side effect of chemo. And blah, blah blah, its better to cut your hair so you don't experience the emotional toll of it falling off in the shower or everywhere.

My Hodgkin's lymphoma diagnosis has been staged and is classified as Stage IIA ("A" means no symptoms of unexplained fever, night sweats etc). Hence, this is considered early stage cancer which is good according to my doctor. I do not have any "B" disease which means "bulky disease". I have multiple enlarged lymph nodes in my neck and a few mild enlarged lymph nodes in my chest. Bulky refers to cells greater than 10 centimeters in diameter and require more chemo. The only downer is that the doctor explained that apart from the initial large tumour cells on my neck, the results revealed more tumor cells on the left hand side of my chest. which require further investigation.What that means is that I have to go back to the place I hate so much - the nuclear place to do this urgent special test called Gallium scan. The Gallium scan is an important indicator of Hodgkin's activity in the identified tumours in the left side of my chest.

Let me give you a brief overview of how Hodgkin's is staged into different groups. Remember earlier in my blogs I mentioned that Staging helps determine prognosis and treatment options. Hodgkin lymphoma stages include:
Stage I - means that the cancer is limited to one lymph node regions or a single organ.
Stage II - means the cancer is limited to a section of the body either above or below the diagram.  In this stage, the cancer is affecting two different lymph nodes or the same side of the diaphragm.
Stage III - the cancer has moved to lymph nodes both above and below the diaphragm or its in the spleen.
Stage IV - This is the most advanced stage of this type of cancer. It means cancer cells are in several parts of one or more organ tissues. In this stage, the lymphoma affects both the lymph nodes and other parts of the body such as liver, lungs and bones.

My treatment plan involves 4 cycles of chemo in combination with radiation to the areas of the involved lymph nodes instead of the traditional 6 cycles. Each cycle is broken down into two - meaning one cycle will be administered as an outpatient twice in one month with a two week break in between to allow the blood counts to recover. The A, B, V, D will be administered through an intravenous line. I got a whole bag of different prescriptions to take prior chemo to manage the common side effects such as nausea, etc. Given the very nature of chemo and its potential to destroy both good and bad cells, the two week break in between is kinda like a holiday for me to build strength to take in some more chemo. The radiation treatment plan will only occur after the 4th cycle under a different radiation oncologist who will determine how many cycles. I believe the radiation will be targeted to only the parts of my body known to have the cancer (like its some kind of relief).

I Miss My Mom!

Today, I miss my dear mother so much that it hurts. My mom is like the emotional bank where you run to deposit all your hurts and worries. Then, she allows you endless withdrawals of love and compassion making you feel better instantly. She knows my weaknesses but loves me anyway. I miss my mom's warm understanding and infinite patience. If she was here, she would give me reassurance and soothe my sometimes childish fears. Today, is one of those days where I have that deep longing and just miss her. I want my mommy! I feel like a vulnerable little girl and want her to take care of me and just wipe the tears that I cry. I wish my mom was here with me and I could just lie on her lap like I used to. I must say I am having a really tough time without my mom around. I just wish I could hear her tell me, "Don't worry honey, everything is going to be okay" or just give me a big hug. My mom has always been my truest friend and the kind of jet fuel that enables me to do the impossible, especially when adversity thickens around me. And today, I just miss her so much. My mom is the kind of mom who will be there for you even when everyone else has deserted you. She is my Queen and my hero. I miss her and I love her very much.....

I miss you Mama! I miss you when something is troubling me because you are the one who understands me well....

Final Staging Procedure # 5 Chemo Overview Session for Patients and Family

You are all wondering how is chemo overview part of staging? It is part of staging because once all the tests are done you have to be prepared and reminded again about the notorious side effects of chemotherapy and how it would drastically impact your life - the usual blah blah blah blah! Shall I save you from the gory details, I think not! The nausea and vomiting, diarrhea,  constipation, skin and nail changes(who knew breaking or falling off), the fatigue, the hair loss, mouth sores and reproductive changes (not that I care much about that)! What else? They tell you to save yourself the trauma - "don't go finding answers on Google!" Really, who doesn't go on Google when they are freaking out about something concerning their health? Yeah, scary no wonder you have to take a class and some more literature to read (I need a whole space for lymphoma on my bookshelf) topped up with a guided tour of the place where its all gonna happen - not very private but who needs it anyway. I wish we could just focus on the positives - I guess there are not so much positives apart from how chemo shrinks the cancer cells and hopefully gives you your life back. This really feels like school except I am paying more attention and exercising more due diligence this is my life ya'll.  I need to have a handle on this so I need to take everything in. Don't want any surprises once the chemo shit starts sending me on a roller coaster. After the class, I wanted to reflect more on this but realized that I am not in a position to diss how chemo is toxic or how bad it is because I need this toxic shit to shrink these cancer cells causing me much distress. You know how they say, people who live in glass houses should not throw stones?

Anyhoo, yesterday was the D-day, the final part of the staging process. Phew! no needles and no machines for now. What a relief! My right arm is hurting from all the poking and proding so far, I deserve a break. This was just a training session on Questions and Concerns before you begin chemo. No, its not a one-on-one its a group session. As I looked at the agenda I wondered, if some of the stuff pisses you off, do they think any one of us was going to get up and say "Fuck That! I am not going through with this damn chemo?" You look around and see the look in everyone's eyes full of anticipation and shouting lets do this! For myself including the others in the room it appeared no matter how scary it all sounded, we were all ready and prepping for starting chemo next week. It was interesting that as people introduced themselves around the room, the different types of cancer were represented, pancreatic cancer, lung cancer, colon cancer, breast cancer and lymphoma. It looked like one of those diversity classes except this class makes you even more aware that cancer does not discriminate. It affects all of us whether you are black, white, brown or yellow - everyone is susceptible to cancer! Cancer does not care whether you are rich, poor or somewhere in between. Damn this cancer! As we introduced ourselves we also mentioned who our different Oncologists were. For a minute you forget about your own cancer and just go Wow! I am not alone in this battle, we are an army fighting this formidable battle! When I saw the people who came for this appointment alone - unaccompanied by family or friends, it broke my heart and compelled me to count my blessings as I watched Tinashe sitting beside me as she intently proceeded to take notes and ask pertinent questions about how she can support me like she is back in University! Gosh! it brings tears to my eyes. Tears of joy and gratitude. I appreciate you Tinashe more than you will ever know! You are my pillar of strength! Thank you for your dedication and sacrifice, you are amazing!

Anyway, let me bring you back to my earlier blog where I mentioned that I really like my Oncologist because unlike my not so good experiences earlier on in this journey, he treated me like a person deserving dignity like everyone else, not a statistic to be entered into a database. So, the good news is that - I was right! The first thing the charming and friendly Oncology Nurse facilitating the overview said repeatedly, "I love your Oncologist, he is the best!" I just beamed and confirmed that I loved him too! She kept repeating..."He is the best!" Let me tell ya'll, I felt so comforted and privileged that I was in good hands after-all. Of course, the other people in the room may not have received this news well because who wants to be second best? I think this session was really helpful because it prepares you while at the same time gives you control of the more difficult part of the journey that lies ahead. I will not bug ya'all with the nitty gritties but what we covered was, getting to know your health care team, what chemotherapy is and how it works, a typical treatment day, tips to help you manage side effects and tips to help you cope.

I will go over my own regiment since each person's treatment is different. Like I have said before, my course of treatment is called ABVD which is a four drug regimen. A-Adriamycin;B-Bleomycyin; V-Vinblastine and D-Dacarbazine. These drugs are usually given in that order (A,B,V,D) lasting 28 days and consists of two treatments given two weeks apart over a period of about six months. Each drug listed above works in combination and treats Hodgkin's differently and has its own side effects.

I will not address the anticipated fear and dread associated with my impending chemo next week because re-harshing my fears is not going to benefit me in any positive way. In fact, apart from sounding like a broken record, its just escalating my anxiety levels! Whoever came up with the theory that fear is a survival mechanism in response to perceived threat was crazy! Fear is what it is. It is what it is.....You are afraid, you are worried, you are anxious and you are nervous. I think I have said enough about my fear and so far it has not worked for me. So, with that said, I will remain with the understanding that because fear lies in my sub-conscious mind, I just need to  understand that often things always look impossible until its done. Who said, courage is not the absence of fear! Remember to stay tuned......