I am still here....Updates

It seems like ages since I have posted updates so I thought it was about time I updated y'all properly on what has been going on in my world. You know I miss y'all. And, thank you to all those who have inboxed checking up on me. A lot has been happening with me these past few weeks. You have not heard from me in a while because I figured, why not blog when things are looking up rather than blog about sad and depressing stuff. While I do feel guilty at times about this I find myself pausing and reminding myself what this blog was really about, RESOLVING TO LIVE and if I am doing that, it means I don't always have to be a Debbie Downer but breathe LIFE! Of course, the side effects are still in force. My saliva is still missing in action and the fatigue continues. Sometimes I feel like a centenarian - yeah over 100 years old believe me. But, as always I remain hopeful that this will all go away at some point with all the abundant love surrounding me and the gym tonic...I recharge every time I go to the gym its been working miracles so far.

I know the worst appears to be over and I am coping extremely well, healing, adjusting to work/life balance and rebuilding in every sense of the word. Often, it feels like a real chore - the truth is, the illness, the pain, the terror of almost dying shattered something in my soul. So, as much as many people talk about healing and moving on, I believe there is no such thing because the trauma remains deeply etched in my brain. Life is never the same after cancer. I do have those occasional pity party moments but try to remain positive. Just to give y'all an update and assure everyone that I have not gone anywhere. Am still here and kicking cancer's ass in spite of.... all the above!  I still worry that the cancer may come back but I know that whatever happens I will be able to deal with it. As always, I have control over my diet, exercise and attitude but there are some things in life we can never control. With that said, I promise to work hard on continuing this blog and reminding everyone who reads my blog that there is life after cancer. The journey may be difficult but once you get there it can be pretty amazing.

Anyway, the last time you heard from me, I had a golf ball size swelling on my jaw. I went to see my Oncologist last week and he referred me back to the Oncologist Surgeon who had initially done my biopsy at the beginning of this journey. Boy! when that happened, I was shocked and I just stopped in my tracks. Many things going through my mind.... First, I thought, wow, has the cancer made a return? Then, I also remembered how painful the surgical biopsy was and I was overwhelmed with emotion. I wept, because I thought this sure feels like a classic snakes and ladder's game which I am not keen on playing at all. Then, I recalled how I had been mistreated during the beginning of this cancer journey. I felt like asking my oncologist to refer me to someone else. But, remember last time I talked about hitting the refresh button. Well, I did just that, I hit the refresh button on life and it seems to really help because it gave me a clean slate and a dose of courage to confront life curve balls every time they are thrown at me.

As always, I went in with my rock, Tinashe by my side, just nervous and anxious but carrying the ever blazing optimistic torch. The good news is, this guy unlike last time, actually remembered me, including my first name and treated me so well. We were both dumb founded. He told me that I had an inflammed abscess and proceeded to explain what was going to happen before doing the incision and drainage. Yeah it was quite painful because apparently anaesthesia does not really work on an inflammed part of the skin. Still the good news is, I felt like the red carpet was rolled out for me despite the very painful procedure. From his assistant up to the residents, nurses, I just felt like a VIP. After the unpleasant procedure, I continued taking my antibiotics and pain meds and within a few days felt much better. The swelling actually went down within a few days which made happy. But, that does not mean I am out of the woods yet.

So far, I just have a scar on my cheek a reminder of this never ending journey called cancer. No wonder its called a journey! Now, I am waiting for my next appointment in August where the same surgeon will do a CT Scan and insert a camera through my nose to determine why I had the inflammation in the first place. He wants to make sure I do not have any hodgkins tumours growing again under the abscess. So, stay tuned for that part of the journey.

Until then, "Dream as if you will live forever and live as if you will die today"...

xoxo

I Look Okay But, I am Not Okay....

Let me start with sharing good stuff! the I look okay factor! My hair has started growing now after all the boohoo chemo nightmare and tears! Who can forget the tears of losing my sister locs/dread locs and the brief wig drama! The funny part, is my hair came back different! I am so happy its back and I don't have to wear hats, scarfs or a wig, that I don't care much about. I have also always wanted curls and now I have them. I have heard many different things that hair comes back one way then after a few months goes back to how it was. If curls will stay (Yay!) If curls are temporary (Boo..) the texture has changed baby fine curly and cute. I love my new hair! Tinashe is always enjoying and playing with the little curls. Looks nice, so I am told. LOL!! The oncologist had told me it may come out grey but nope, its black, curly and cute!

After riding the Hodgkins bus, the end of treatment can be challenging as I am finding out. As I reflect on the profound physical and emotional assaults to which I have been subjected to - the feeling is surreal. It does not feel like it happened to me. I have developed a mask that I put on in order to hide some of my real feelings, particularly from unwittingly insensitive or unhelpful remarks. For instance, I have learned to smile when someone says cheerily, "You look really well" when I am actually feeling terrible. Many people think that cancer is like other illnesses where once treatment is complete the disease is cured and you are better. Surprise, surprise, cancer is infinitely more complex than that simplistic analysis. The end of treatment is the beginning of something else. It is a rebuilding process that requires management and direction. Just to put it lightly, I am still reflecting on what I have been through and trying to put everything in its rightful place in my personal life autobiography or history.

Wait a minute.... allow me to say this again. When you finish treatment this cancer roller coaster is never over. Trust me.... Remember I have mentioned how these first few months post-treatment have been a time of change for me. Its not so much getting back to normal but trying to find out what my own normal is and re-defining that can be quite an insurmountable task. Even though my life has new meaning and I do look at things differently, I understand that things can keep changing during this recovery process. I often experience mixed emotions and lately, I discovered that my own expectations and reality often collide. Sometimes I feel disappointed and frustrated when I am unable to meet my own physical or emotional expectations. During that time, I feel isolated as though I do not belong. While I do feel hope, gratitude and relief that I finished treatment and feel much better than before, I have days when I feel apprehensive, cautious and uncertain about the future. I am always wondering whether this cancer is gone or if it will return. Living with uncertainty is the most difficult aspect of living with the aftermath of cancer.

Because I am looking better (whatever that means) I have noted that people around me often do not recognize the struggle I am experiencing, sometimes pain and despair; let alone the adjusting and recovering that I need to heal and regain my energy and my whole being. Some people expect me to return to normal before I am ready but some do understand (what is normal anyway? I keep asking). These days, I like saying that I am selfish. I put myself first! I listen to my body and give priority to taking care of my physical and mental health. I do pay attention to what I am capable of, including avoiding activities that are too much for me. I set my own pace as I rigorously plan for a gradual return to my former self. Thank God I have been blessed with an amazing job where I am treated with utmost compassion and care and I enjoy the flexibility of being able to work from home when I am not feeling well. I do feel incredibly supported and for that I am eternally grateful.

Last week, despite all the gym toning and exercise, I had been feeling really fatigued and lacked the vigor necessary to manage minimal daily tasks. Just that frightening place where the old certainties and norms are gone and I seemingly keep pandering to look at the world afresh. I took two days off to rest and still did not feel better. Instead, I developed a fever which I ignored at first until I noticed a painful swelling on my left jaw- the exact same sport where the tumour suckers were. I have a lump the size of a marble on my lower jaw and aaarrgggh!! it hurts. I immediately called my chemo oncologist and got a voice message that he was away until next week. Then, I called my radiation oncologist who asked me to go in and see him immediately. He was not sure what was going on. He prescribed antibiotics for seven days and ordered blood work to rule out any infection. Why do I keep forgetting that chemo knocked down my immune system? By Friday the swelling appeared bigger and my left ear is very sore. Am I scared? Absolutely! Am I panicking? Absolutely not! I am calling this one a challenge not a crisis. Hopefully, the antibiotic will take care of this bump in the ride and the morphine is handling the pain. There, the emotional and physical part of Hodgkins recovery continues. A luta Continua! (Portuguese phrase meaning "the struggle continues").

Like a good sport, I will therefore continue to share the ups and downs. So, the odd updates like this one will continue.  Here is the thing, while I would love to pop the champagne lets keep it on the ice until this news is confirmed by the blood work results and visible reduced swelling if it is just an infection. Rest assured, it is not all doom and gloom because there are times when I wake up feeling better than I did the day before. In my new normal, I am solely focusing on the principle of one day at a time understanding that the recovery process may be slow and gradual.  So, I will continue holding onto faith, believing that change will come whenever that is. Meantime, I continue to live with intention and purpose, play with abandon, laugh more from the belly, appreciate all my family and friends and most of all live as if this is all there is. All in all, I recognize and am comforted that I am part of something greater than myself.

Until next time, do take time to pamper and be good to yourself.


and Bliss...

Confused, Trying to Figure Out....

Just trying to figure out....  Am I sounding like a broken record, that annoying repetitive track everyone is tired of hearing, which sounds like "I am sick, I am sick". Or is it that this horrendous journey is making me feel like I am losing it? Just wondering.... Or is this something that people go through after long periods of illness? I am tired of wondering.

Tinashe took that shot this week from my hospital bed when I was experiencing disorientation from a gravol shot. I must mention that I was also feeling exhausted from throwing up and just being pissed about not seeming to feel better. The funny part is, when she saw me throwing up she threw up also and suddenly it was like two convalescencing patients stuck in one room. We could not help ourselves but laugh hysterically. We both appreciated this moment of finding humour in a somewhat difficult situation. It also revealed how sad we were both feeling. We do keep revisiting this very unfortunate incident and still find ourselves laughing uncontrollably because it was funny as the nurses stood there confused but obviously affected by the dominor effect of the humour of it all and sharing in the amusement. So are the days of my life as we continue to enjoy the remnants of laughter even after all is said and done.

I have spent the past few days in hospital hooked up to an IV. After hoping the hospital visits were a thing of the past. Unfortunately that wish not yet granted. It appears I still have some hiccups here and there as the journey continues. The pain in my neck is just unbearable and I cannot stand the fever. But, no, I am not over the edge! I am just not feeling well but trying really hard to keep my head up and still looking forward to returning to normalcy mentally, emotionally and physically. Like I mentioned in my last post, I have been feeling crummy with that swelling on my neck coupled with the nerves. Every time I look in the mirror and see the recurring swelling on my neck, I become mushy and turn into an emotional wreck. Yeah, this whole thing is sending me into a tailspin. I keep thinking, Gosh! is that the tumour back or my imagination is going wild? What is going on? Yeah, just the fear alone of thinking maybe the treatment didn't work has been doing a number on me.

I keep thinking, Didn't I get a chemo/rad graduation recently? I feel ripped off right now because what was that celebration about? I feel like a hot mess for real! I know that I have tried to stay upbeat throughout the treatments but seriously, now that part is over, why am I feeling more afraid and worried than ever. I am scared and feel like the emotional plane is torpedoing. But, thanks to Tinashe my rock and pillar of support. I know that I am not impervious to the occasional downer, but she always manages to bring me back home to sanity where positive things happen. My Princess Tinashe, just keeps massaging my bruised ego and reminds me that I have a fighting spirit (which I am not sure sounds like me) and she keeps reminding me how strong I am and the resilience I have exhibited during not just this cancer journey but the day to day stresses and hassles of life in the past. Then, I start realizing that for sure, I always see the glass as half full even when it lies shattered on the ground. I take a deep breathe and I suddenly realize the importance of snapping out of it and allowing myself to live in the moment without worrying about the future or what could be.

The good news is, I am seeing my oncologist next week instead of the scheduled March. I cannot wait to go through all the tests again to make sure this is nothing but a glitch in my recovery journey. Until then, stay positive with me and remember, life is like an onion, you peel it off one layer at a time and sometimes we will weep. Not just tears of sadness, but sometimes, tears of joy from those rare moments where you find yourself laughing uncontrollably in the middle of despair. For me, those moments are more than just respite from sadness and pain but, a source of meaning and hope where courage and strength dwell. I find those particular moments healing and source of renewed strength to keep going. Such is the incomprehensible nature of life, as I continue to desperately search for those rare moments or flashes of clarity from the universe.

For now,  as I anxiously wait for the doctor to give me a cancer remission pass, lets all just live and breathe deeply......

The ENT Visits

I am beginning to feel desolate, I just want to know what is going on and its taking so long. I visited the ENT specialist on June 15th. He tells me the swelling is just too big and he decided to give me a very strong antibiotic to alleviate the swelling as well as in case it was a simple infection. He saw me again on June 28th to see whether the swelling had gone down but, the swelling was still the same. I got some more antibiotics and went back again on 5th July and he tells me he could not do the biopsy because the tumour was lodged into my neck and I needed to see another specialist who deals with that. Oh God! my life is going into a spin! But, there is always a silver lining. My best friend and the God mother of my children, Sam is visiting me from Slocan, British Columbia and we are having so much fun. Oh! Sam, I love you to pieces. You are so special to me and you are my rock! A good distraction from all the depressing happenings. Sam accompanies me to the appointment and holds my hand and renders much needed emotional support. Am glad that Tinashe is getting respite because this whole saga is affecting everyone. My next visit is scheduled for July 21st with the Ortolaryngist in Chief. I am hoping this should be great since he is the big boss! My mind is not justfocused on my health. I am thinking WHY???? I am about to finish my thesis...WHY?????  While I wait for this appointment I am thinking let me pound away and finalize my thesis before the deadline.  I am thinking at least whatever outcome it is at least I will have some kind of accomplishment under my belt. I wait and I type away throughout the night when I lose sleep about whats going on with my health.....