Gallium Scan Results are in......

The gallium results are in da da da dum! My Chemo Oncologist is the one who discussed the results with me. Remember, I am working with a chemo oncologist and a radiation oncologist, two different specialists working together. I have learnt not to celebrate pre-emptively because this cancer journey is sure complicated and unpredictable. So, until I am done with radiation therapy I am still holding my breath. The good news is that the gallium scan shows that the gallium avid tumors have decreased in size. The CT scan of the chest shows the tumor shrunk to 1cm. The CT scan of the head and neck also show the big tumor has reduced in size to 1.8cm and I am doing well so far. Therefore, radiation is supposed to shrink these tumors further.

Did you know that once you complete both chemo and radiation treatment you cannot say you are cured?Yeah, I was surprised too. You say you are in remission. Remission means absence of disease activity with the possibility of return of disease activity. Yikes! Once I am done with radiation whats going to happen is that I will get CT scanned every 3 months for the next year then it will be every 6 months then every year. These scans are done to make sure there is nor recurrence of the cancer. So, I am not off the hook yet.

Feeling Not So Good

Today I woke up feeling queasy and sick to my stomach. The wave of nausea just engulfed me and I kept hoping I would feel better by the end of the day. Unfortunately, that was wishful thinking. I spent my afternoon vomiting and later took a nap just to deal with the exhaustion that ensued. When I got up I was feeling so hungry and decided to eat something. Well, big mistake, I vomited again so violently and cursed myself for desiring to eat something. I had hoped this was enough vomiting for the day but, alas! I continued throwing up through out the night and only managed to sleep at 4am in the morning. I guess that wraps up my very uneventful and depressing weekend. Nausea and vomiting after radiation are part of the treatment package that I really despise. I just want all this to be over and I continue the countdown in earnest. Until then stay tuned.......

Radiation Day # 2

I cannot help it but I hear that song, "The final countdown" just playing in my head these days. For some strange reason, radiation therapy makes me see that bright light at the end of the tunnel. After my first radiation therapy, I developed swelling and numbness on my neck, the same area where the cancerous tumor is located. Now, that I consider myself a pro I didn't panic given that I have come to know that these treatments do have adverse side effects no matter how helpful they may be. Anyway, I saw the Radiation Oncologist today and of course he allayed my fears and stated that the swelling may be the result of blocked lymphatic fluid since the tumour was sitting right on the sub-mandibular gland. He advised that I purchase some unscented aloe vera and do some gentle massage on the spot and also do some gentle neck exercise to reduce the neck tightness and increase neck motion while increasing drainage of the lymph nodes. After consulting with my doctor, I had my second round of radiation therapy and am just happy that its not as bad as chemotherapy. I cannot help but do a serious count down and cannot wait to finish this final process of my treatment plan. Until then, stay tuned......

Radiation Day # 1

Today I had my first radiation treatment. Before registration I was just so nervous and anxious remembering the just so devastating process of chemo. Yeah I am scarred for life...I kid you not - I have PTSD! (Post Traumatic Stress Disorder). Its funny that this whole cancer journey has turned me into such a sceptic. Despite my radiation oncologist telling me that radiation was not as bad as chemo I did not believe him one bit given these medical people are taught to make you feel as comfortable as possible rather than raise your anxieties. Remember radiation is localized therapy so you don't feel the the effects like chemo. Radiation is given via machines called linear accelerators which produce high energy external radiation beams that penetrate the tissues and deliver radiation dose deep into the areas where the cancer resides.

Anyway, Tinashe came into the treatment room with me. Since she had not seen the simulation process when the mask was created, she was not only amused, but I could see that she was nervous as they started placing the mask on my face and bolting me down onto the bed. She took that picture and kept holding my hand and kept asking me if I was okay. Thats me inside that dreadful white mask and lying down under the radiation machine. Thank God, my hands are not bolted in. So at least I can communicate using hands. You guessed right I could only lift my hand to respond that I was okay. Who can talk when they are all wrapped up in that mask seriously. There is no room for talking you immediately turn into sign language. Two very pleasant radiation nurses placed the mask onto my face and I got bolted down so that I stay put. I know that is the only part that felt creepy and makes you feel claustrophobic, but, I got over that after a little while.

Anyway, unlike chemotherapy the set up takes quite long yet the treatment part takes less time. Once treatment started Tinashe was asked to leave the room and the oncology nurses left too. I was left alone and I was under the radiation machine for about 20 minutes and I was done. In comparison to the dreadful chemotherapy, give me radiation any time. It was much easier than I anticipated and I was really happy about that. After treatment the nurse advised me that I will be seeing my Radiation Oncologist once every week so I am seeing him tomorrow. Also, each day before treatment I have to go through the assessment room which evaluates how well I am tolerating the radiation and monitor any side effects. How cool is that? I feel so privileged that I am under such extraordinary, amazing and thorough care. These are things I never take for granted, I just feel so humbled and I am so grateful. I may be feeling unwell but I look for bits of pleasure in each hour and every moment. I have gratitude in my heart because I find that it unlocks the fullness of life and turns what I have into enough and even more than I can ask for. I just feel so blessed!

More tomorrow....

What Not to Say to a Cancer Patient

Apart from lessons learned, during this journey there are things that people say that can really be upsetting even though often, its said with the best of intention. I have encountered people who say such foolish things and I usually just roll my eyes, curse them under my breath and keep it moving. So, I thought what not to say can never be enough. I stumbled upon this insightful list of things not to say to a cancer patient and just felt compelled  to share with y'all. This list is from a hodgkins lymphoma survivor, David Hann's blog, a conductor and pianist on Broadway in New York. I found it really insightful.

*Do not stop calling them because suddenly you don’t know what to say. Do not try to avoid them in social situations because you are uncomfortable.

*Go up to them. Call them. E-mail them. Tell them, first, that you heard about the cancer. Tell them second that you think it sucks and you’re sorry to hear about it.

*Don’t talk about your uncle who died of the same cancer. Don’t talk about how your whole family has had cancer, and you’ll probably die of it, too. Don’t talk about how many people die of it every year. Don’t talk about death.

*Don’t talk about how you once got diagnosed with pneumonia, so you can understand what it’s like. No you can’t. Don’t try. Tell them you can’t even imagine what it’s like to go through something like this.

*Do not talk about the alternative medicine that you read about in Crazy Monthly, that is sure to cure them of their disease.

*Don’t tell them that their treatment isn’t good for them, and that lot’s of people end up dying from the treatments, or that chemotherapy is just a big conspiracy between the government and the pharmaceutical companies, etc., etc. Don’t tell them how they got it. Just stop. They don’t need to hear about it.

*If they are sad about it, don’t tell them that they shouldn’t be sad. They have a right to be sad, or exhausted, or whatever it is they feel. Don’t tell them what to do.

*Ask them about the treatment – then listen to the response. It might be a long response, with a lot of medical terms. Listen anyway. It’s all they probably think about right now, anyway, so just let them talk about it.

*Give them a hug, or a handshake, or a pat on the back. Touch them somehow. Tell them that you’re concerned for them, and you’re looking forward to them being a cancer survivor.

*Do not give them the line, “if there’s anything I can do just tell me…”, unless you are absolutely certain that you would do ANYTHING for them. Just don’t say it. Because most people don’t mean it. If you really want to do something for them, come up with the idea yourself, and then do it. Send them flowers, or a book, or bring over dinner for them.

Be sensitive and Be kind to one another!

Post Chemo What Have I Learned So Far?

Pre-cancer, I was that person some may call superwoman. I was constantly the over achiever, trying to get to the next level both at work and my personal life. I lost touch of the fact that life has to be celebrated as it is presented in front of you. But, what changed? When I was diagnosed with cancer, the hardest part was the reminder of my own mortality. Really, who wants to die? I just assumed the worst for myself and I was really scared. The fear and despair that engulfed me is indescribable. The tears and feelings of despair at the injustice and unfairness of this diagnosis are just beyond words. I was numb for a long time and had these waves of intense grief and just sobbing for so many days. Cancer has a way of making you feel that you are no longer in control of your life or your body.  I just felt disorganized and so distant from others and just felt alone. Strangely, I also wanted to be alone. The treacherous journey feels really bumpy and filled with traumatic shocks. I had to give myself an emotional checkup ever so often in order to maintain my sanity. I had to admit my fears especially of death and noted how it was actually distracting me from dealing with my cancer. Most of all, I learnt that it was okay to be demonstrative of all these crazy feelings especially the being vulnerable part. Being vulnerable allowed me to conquer my fears through letting go of my inhibitions and just being at the mercy of life while opening my heart to the possibilities of life. My biggest lesson was that while it is okay to have fears, it is important to put yourself in charge of your cancer journey through educating yourself about facts regarding your diagnosis and treatment while putting fear in its proper place of non-distraction.

Learning that I have cancer has given me much greater clarity and intensity of understanding that life was indeed precious. I learned that going forth, the choices I make every single day could either give meaning to my life or derail me. This whole journey has taught me to live my life more meaningfully and more purposefully. I have learned to live in the moment and enjoy everything around me. I have learnt to focus on the right things in my life while riding this bumpy hodgkins bus. Now, I know without a doubt that life is beautiful for the most part and the things we call problems are really not problems. They are mere inconveniences. I have also learned from all the loved ones around me how much life has impacted theirs. I must say, from all the acts of kindness, I realized just how much I am loved by so many. I learned that I am never alone and that I will always have a great support team at my call. That feeling is quite humbling... Evidently, the lessons have been many for me so far but the biggie was realizing that optimism is a sure form of healing. What is optimism one may ask apart from being cliche? Optimism has been described as an attitude or inclination towards positive thinking. In simple terms, it is the ability to see that silver lining in every cloud. I guess that is viewing a glass as always half full rather than half empty. Therefore, optimism is hope. Through this experience, I learnt that hope and despair are forever intertwined as I moved from one end of the spectrum to the next. I can say without a doubt that you cannot even consider one without thinking about the other. I swung like a pendulum and floated from one end of despair to the other end of hope until at some point, I had an epiphany that as human beings, without hope we have nothing.

The great Martin Luther put it best when he said, if you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream. I dream to be cancer free, to be healthy and to have my life back. Learning that you have cancer feels like you suddenly step into this very dark hole. However, when you step into that darkness, I learnt that chances are you will either find a firm ground to stand on or you simply learn to fly. Talk of the latter, that still has to happen for me. I am somehow still holding on desperately to the lifeboat for the darker times and incomprehensible nature of the universe. Yeah sometimes we need that smack in the face from the universe in order to wake us up to ourselves. The truth is my ground was shaky as I struggled with coping with the devastating effects of chemotherapy treatments which I have already shared that they are so bad that there are no enough right words to describe the whole experience. I remember many times during my cancer journey, bargaining with God from to please please stop the horrible chemo side effects to please please make me well. I recall crying endless tears and just feeling so alone though I was surrounded by so many loving people.

During this treacherous journey, I have interacted with a few people who have gone through the same life changing experience and I have been told that going through the cancer journey can turn into a blessing. Touche`, I am still thinking about that one whether its a blessing or a curse. However, I must admit, there are some positive things that have come out of all this. I have learnt that it is my job to be persistent and ask questions whenever I feel that more should be done regarding my health. The worst that can happen is the doctor getting annoyed but thats okay as long as I am not combative in my delivery to get the treatment and dignity that I deserve. Although I have always been an appreciative person before, I must admit, I am now even more thankful for so many things such as my wonderful family and friends who all rallied around me offering much needed support and love. I appreciated all the overwhelming and amazing support and love. Having cancer has allowed me to make a clear distinction of who really cares about me from those who do not. I learned that true friendship means that someone who not only laughs with you in the good times, but also holds your hand when you are scared. I know for sure that life is very fragile and I will never take simple things like feeling good and having energy or being active for granted. After this lousy experience of feeling run-down and really sick, I have great appreciation for the times that I feel well and healthy.

Cancer is a total bitch and I cannot stand here and say I am grateful or happy that I have cancer. I am just thankful for what this experience has taught me so far. Cancer has taught me an important life lesson of not taking good health for granted and understanding that tomorrow is never guaranteed. I have learnt the importance of living my life like today is my last and knowing that, no matter how difficult this journey may be, it could have been worse because there is always someone out there having a worse experience than me. I know it sounds corny but this experience has made me want to be kinder and more patient with others because guess what, you never know what someone else is going through. I don't want anyone to get me wrong. This experience does not make me perfect. Far from it, I just know the many things in my life I want to work on and improve. I just feel like once this whole journey is over, I can close this painful chapter and start over again. How many times do we get a second chance in life? Personally, I am so grateful because I feel like I am getting a second chance! Having cancer does not in any way mean we stop living or stop enjoying life. It simply means we alter how we deal with the new normal. I have learnt to enjoy the moment and not allow unimportant things to overtake me. I have learnt to argue less and to laugh more particularly I don't sweat the small stuff anymore. I wake up every morning and look at each day as a gift to be appreciated and savoured. The journey is hard and treacherous but with all the love, support and strength I got and am still getting, even you can get through anything. Do stay tuned cause I am back with gusto..........

Gallium Scan Post Chemo

The good news is I am getting my energy back slowly but surely although the nausea is still bugging me. Today, I just had my gallium total body scan to assess and evaluate progress made this far with the chemotherapy. The machine you see was just doing all sorts of things. You are pushed in and out of the doughnut hole. At times the machine pulls you out and goes into 3D mode. When that happens the two square things you see in the image start rotating around you. Anyway, the whole process is just so fascinating. It took longer than the first one but no pain no gain as I have learned over time. I tell you, when I was doing this test, there was a moment, I just closed my eyes because I thought wow! this machine is just going to smash into my face.

Of course it won't. Just allowing my imagination to run amok! The two squares rotate very slowly right in your face taking 3D images. The process though painless is kinda uncomfortable in a claustrophobic way. And by the way, you get wrapped up in a kind of a velcro straight jacket that is just so weird. Trust me, you are not able to move even an inch while you are inside this thing. Anyway, since this was my second time doing this test, I didn't freak out so much. This straight jacket, I hear is supposed to help you stay still while the scanning is taking place. Now, I await a date with my fabulous chemo Oncologist to advise me how much progress has been made so far. Other than that nothing much to report. Just stay tuned.....