Lovely Day with Deb

Today I had to go the hospital to have an x ray done on my right hip as it has been bothering me once again. I also had to go to the cancer clinic for my routine blood work. I decided to ask my sister Debbie to take me. She arrived early this morning and we headed into Lasalle to have breakfast. LA grill is one of my favourite restaurants to have breakfast. My friend Greg and I usually meet their and in fact he got me and the girls hooked on it. I ordered my usual “Tony” which entails getting a Fred Flinstone size breakfast. 3 eggs over easy, hash browns, ham, bacon, sausage, pancakes, rye bread, fruit and coffee all for a whopping $9 and yes I do eat the whole thing. Although today I left a couple of the eggs on my plate along with sausage so that my sister did not think I was a piggly wiggly…. I enjoyed so much having breakfast with her as the conversation had very little to do with my illness. I liked that. Most conversations I have with people/family is about my leukemia or the wonderful ways it makes my physical appearance look so different.

 

Early this morning I got up with Pat to prepare his clothing for work; it was also a good chance for me to use my new steamer. I bought a clothing steamer at Walmart in preparation of me going into the hospital as I figured it would be much easier to teach Pat how to steam his clothing rather than try and haggle with an iron and ironing board. Yes I get his clothing ready every day, and yes I am preparing as many outfits for him as possible for during my absence. So this morning I turned my awesome new steamer on and waited for the steam to start, once I saw the steam I reached for the hose and in my tired state I grabbed the steamer end and felt my fingers stick to the head. I literally had to pull my fingers off. The blisters popped up instantly. What a great way to start off the day. Now I have to re-think the whole Pat steaming his clothes, because if I burnt myself I am pretty sure Pat will as well.grrr

 

I know I shouldn’t worry about his clothes but I see him when he visits me at the hospital after work and clearly he is colour blind and has no sense of coordinating his look. I once was told by one of his secretaries that they know when I am either away or in the hospital based on what he wears….so I fixed that. I threw away 2 garbage bags of his clothing and bought all new dress shirts and ties, solid coloured shirts that no matter what match any pants, any ties and voila, well put together Pat.  I just have to keep reminding him that brown belts equal brown shoes and black belts match black shoes……

Once Deb and I finished breakfast we headed to the cancer clinic to get my blood work done, I warned her that there was someone there that I always have to avoid because they bug me….so of course she made me obvious to this person that I was there and had to endure a 5 minute 16 hour conversation that I have had many times over. No problem Deb.Thanks. But don’t worry as we were leaving I heard her say oh %$# there is “name uttered” and I waited until the woman came closer and I yelled thank you Debbie for taking me, which then she had to endure a 10 hour conversation with someone who bugs her. When we got in the car we laughed so hard about it and how our bitchiness about others back fired. I guess you had to be there to witness the mission impossible moves we made to avoid the other person.

 

So the x ray of the right hip is to rule out a fracture, which of course I know it is not fractured. I think the oncologists think the cancer has gone to my bones and that is why I am also having a CT scan this week. Fingers crossed that it is fractured or just arthritis setting in. Who prays for a fracture, I mean seriously? Well someone like me who does not want to cancer anywhere else but where it is… After Deb dropped me off the nurse from my oncologist’s office called me to tell me that my potassium is once again high and that I need yet another drug to take to help bring it down. The pharmacy delivered what I thought would be a pill but instead it is a powder that you mix and drink. I should tell you that it is sand not powder, holy hell I could not even sip this crap…I am not sure how 3times a day I will do this when I can’t even handle a tablespoons worth of the mixture. Maybe I will try wine with it later, maybe it will dissolve better. (kidding) Last week my calcium was too high this week potassium, I sure wish I knew what was causing the imbalances. Hopefully the issue will resolve itself otherwise I can’t start my chemo. The nurse also informed me that my liver enzymes were off so I have a CT scan scheduled on Thursday for that as well. 

Once my CT scan is done I am being admitted for what will be my first round of 28 days of the arsenic chemo. I will need to be hospitalized for the full 28 days to be monitored. The side effects of this chemo are quite different from that of what I have already had. The issues I may face are heart related….but hey no big deal right? They tell me that with this regime I will be cancer free once I am done. Let’s just hope that it does not mean dead…..arsenic is rat poisoning……….starting to wonder if my husband is paying off the oncologists…………hmmmmmmmmmm.

Anyway enough blabbering on, 2 days left of freedom before they lock me back up. Going for breakfast again tomorrow with a dear friend and who knows what the rest of Tuesday will look like. Either way it will be good anything is better than the hospital.

Cheers 

~Christine~

June 2014 - SUCKED

This past June was supposed to be a month in a year that I would always remember and cherish.  I literally was planning the events of this month for several months in advance. To be honest with you I am not sure where to start with the level of disappointment this month gave me. It breaks my heart and brings me to tears each and every time I think of it. Each milestone has its own importance to not only me but to my children as well. 

In the middle of June my middle daughter Melissa graduated from St. Clair College after completing a 2 year program specializing in Gerontology, (Social Service Worker). On so many levels this is an amazing accomplishment. Not only did she graduate but she had honour roll as well. The convocation was in the middle of June and of course I was still in the London hospital in rough shape with no hopes of attending the graduation ceremony. I have been looking forward to seeing her graduate for a long time. I am certain any parent would be excited, proud and thankful that their child received a post-secondary diploma/degree. So besides the fact that I could not go, she decided to not attend her graduation. I was devastated to say the least. Her reason was that I would not be there which would make her feel sad. I tried to convince her that her own accomplishments should be celebrated but she made me promise that after I got out of the hospital that we would celebrate with a nice dinner at a restaurant of her choice. I know that my heart was broken as I was filled with grief that my situation was once again imp-acting my children in such a negative way. The guilt is too much to handle for this. Yes I am alive and that is what matters but don’t we live and want to live to witness those types of events in our children’s lives? No matter what Leukemia/cancer has robbed me of a joy that I can never replay……

So the next thing I know end of June rolls around and I am still in the hospital and still not well enough to get a 4 hour pass. Samantha my baby graduated from High School and I was not there to witness that either. I have written about Samantha before and how I loved driving her 30 minutes to school each and every morning….. we are buddies. Her accomplishments are mine as well. She is my last child and the last to complete secondary education and where am I? In a fricken hospital bed. About an hour and ½ before her ceremony she came up to the hospital as a surprise to see me. She looked beautiful, and truthfully inside I was angry that she came to see me, it was hard to see her knowing I could not watch her walk across the stage and receive her diploma. Even though they videotaped it for me…….it is not the same. No matter what I wanted to and deserved to be at her graduation. Yes I am alive but again aren’t these the milestones we want to live for? Any way you look at it ……it sucks. 

June 29^th came and went but not without a day full of grieving, crying and wishing I was dead. Many of you know I had a party planned to celebrate my 10 year cancer anniversary. Having my liver resected in March of this year left me cancer free for the first time in 10 years. Over 250 people were to join me to celebrate HOPE. The party was to serve as a reminder that no matter what you face …..if you have HOPE you can overcome it. I felt like a fraud, here I am lying in a hospital bed on my 10 year anniversary dying of leukemia. Guess what be thankful you are alive……pffft. When your heart is broken nothing matters. Do I sound bitter? Sorry….but I guess in a way I am. I feel robbed of so much. I will never get back what I lost out on this month; never! 

I have acute leukemia the idea of celebrating 10 years of cancer free, not going to happen…..and I am pissed. I really thought my purpose was to bring hope and inspire people to fight for the things they want and need in life.. I thought my cancer fight was to serve as a reminder to others that cancer CAN be beat and that you can move on and live a full life despite it. Haven’t I already had enough with cancer? So where the hell did leukemia come from and why during a month that meant so much to me? The million dollar question…..Now I just don’t know what to do or what to think. I am confused and scared about my future and what it holds. For the first time in many years I am terrified and unsure of everything.

It took me to mid July to stop with the crying and depression. It was really bad for me. My hair was falling out, I was vomiting all the time, my mouth sores were horrible…….truth is I was having a hard time finding a reason to fight. I understand completely why people give up when others expect them to fight. Truth is I only fought this time because my husband begged me every single day to get better. He told me I was beautiful every day, and every day he sat by my bed and told me how proud he was of me. He helped change my depends when I needed help and he did graciously and so very gently. His efforts made me feel guilty for not wanting to live.

Today I am in a better place and I owe that to him; I needed someone to love me more than I could love anyone or myself. The girls all know that not being there was out of my control and they understand in the most loving of ways but no matter what the guilt will always remain. The resentment will always be there. I just pray to God I never miss another event in their lives. I just want to get better, I just want to get better, I just want to get better……….

~Christine~

Cancer Treatment

I have had cancer before but due to its rarity I have not had “traditional” chemo or radiation so this treatment regime is a new game for me. The chemo I received when I first arrived in London was not as bad as I thought it would be, but then I had no idea the side effects would not start to show for 10 days. … The nurses told me what to expect like it was text book and sure enough every single thing they advised did happen. The worst part for me were the mouth sores, holy hell they went all the way down my throat and felt like to my tummy. And for a foodie like me that was hell. To not be able to eat or drink was difficult. That lasted almost 10 days. I also did not know the extent of poking that there would be with all the procedures that needed to be done. Thank God my mom was there for most when Pat could not be there. I think the worst was the IT chemo; that is where they put a needle into your spine and deliver chemo. That ensures that the cancer does not reach the brain. Of course I was proud of myself that I made it through this procedure without injuring anyone……. I was quickly defeated when the nurse told me I had 5 more to go. The second one I had to put a brave face on because my daughter Melissa was present for that, and of course there is no way I wanted to scare her with me crying. My mom was also there for it and a bit more observant than my daughter because she noticed my white knuckles from squeezing my own hands together. 2 down 4 to go.

Bone marrow biopsy is another procedure that I must have done several times throughout the treatment. They hurt like a bitch. They literally tap into your hip bone and unscrew a small piece of your bone. The first one wasn’t so bad as I was not sure what to expect but the 2^nd……… now I await the third next week after I am re admitted for chemo. All I can tell you is that I tip my hat to any cancer patient who has had to endure this.

The chemo itself has been delivered to me through IV while being hospitalized. I have not had to go to cancer clinic to have it, so my stays have been quite lengthy. I laugh when my nurses come into my room with a protective mask, goggles, and gloves to hook it up and yet I am laying on the bed in a tshirt, unprotected and allowing the toxin directly into my vein……jeez talk about being frightened. Despite all of the chemo and the pills and such the thing that really gets to me is the questioning by the nurses, did you pee, did you have a bowel movement, how was it, did you eat, how much did you eat, blah blah I know I know it is for my own good but after a while you feel like your privacy is invaded. So regardless if I shit or not I say yes and it was so large I could barely flush the toilet. It would play on your nerves and you know it. Several times a day the same questions. The staff on the 4^th floor are truly amazing and I feel protected because of their knowledge and compassion to my situation. It is just difficult to be in a room for 3 months being asked all kinds of personal questions and having them constantly “pop in”…regardless of how nice and wonderful they are.  I guess I get bitchy at times and that is why my husband created the candy bowl for my room. The nurses love the fact that there is a fresh supply of candy and chocolate bars for them in my room. He also brings them a box of Tim Hortons coffee on the weekends as the Tim Hortons closes at 4 and my night shift is without coffee. They love Pat and treat me special because of it. Notice that I said they treat me special , what I mean by that is that they look past my sarcasm and bitchiness because of my husband’s gestures.

August 24^th I was able to go home after having been in the hospital since the 12^th of June. I was so very excited I could hardly contain myself. I don’t think I should have left as I was very sick , in fact while I was being discharged I was throwing up into my cup, but when the nurse came into my room I pretended I was fine. I just wanted OUT……… I threw up the whole way home and literally went straight to bed……my bed. I stayed in bed for 3 days and felt like complete crap but I was so happy to see my kids my lil dog Sara and finally I was in a different environment which is exactly what I needed. I was to be home for 2 weeks then start my next round of chemo BUT I was too sick and had to go back to the hospital and get readmitted.  So back to describing poop and pretending I love laying bed all day watching TV…

The next round of chemo was a bit harder on me as I lost more hair, my nails, eyebrows and eyelashes. The mouth sores were not as bad but my teeth are weak and breaking easily. So in a nutshell I looked like I was ready for Halloween dressed as Uncle Fester. Somehow I got an infection, fever set in and I was a wreck. Eventually things settled and chemo was done for the time being.

The month of June was filled with exciting and wonderful milestones in our home, in fact each of us had something really big to celebrate but sadly I was in the hospital and unable to attend or celebrate anything. I will save all of that for tomorrows post as there is a lot to share and it is hard for me to retell it without crying, and today it is sunny and I am going for a car ride to enjoy the fall weather without feeling sad about what I missed out on. Hope all of you are out and about today enjoying yourselves. 

Love ~Christine~

A Long Road to Recovery

On June 11^th of this year I was feeling a bit under the weather so I decided to take a nap. I ended up sleeping through the day and into the night. The next day I could barely lift my head out of pure exhaustion. I thought for sure I was coming down with the flu and thought nothing of it. Things took a turn for the worse that evening as I began to vomit blood. I also had no idea where I was. My husband tried to get me to stand up so he could rush me to the hospital but sadly I could not stand. All I can clearly recall on my own was that Pat was carrying me to the car and then waking up in the emergency department. When I looked up I saw my parents standing beside my bed. I had no idea why they were there, but according to my mom I had called them. It turns out that I called a lot of people during the wee hours of the night and it was a blessing to have them there; the ER doctor delivered the news Acute Leukemia. I heard him but I didn’t register the diagnosis. I just knew it was bad as the doctor said the words I watched my father’s face squint like someone had bold face punched him, I could and still can feel the delivery of it. The next thing I knew I was having a bone marrow biopsy and discussing with the ER docs how they would get me to London. At one point I was going to be air lifted but ended up going by ambulance.  (Did I mention this was Friday the 13^th, only me! )lol

The team of oncologists were anticipating my arrival as I entered my isolation room they were already on hand with what would end up being my first round of chemo.  One of the nurses told me that “tonight you are fighting for your life”…. And I was.  By this time I was bleeding out… my arms were so bruised that the blood was seeping out of my skin, my fingertips looked like someone dipped them in blue paint. Even though I knew I was in London surrounded by family and friends (who btw drove to London) I really didn’t know where I was or what was happening to me. At one point I recall counting the IV bags that were hanging on 2 IV pumps, 18 in total. I was given several transfusions throughout the night, blood, plasma and platelets, along with several medications and of course the non- stop chemo.

The doctors told us that with acute leukemia the cells multiply within 4-6 hours of initial onset, whereas for example a breast cancer can take 3-4 months for the same result. It is key to have chemo within 24 hours of diagnosis for best chance of survival. That is why I went to London, as they were prepared to handle the administration of the chemo within that time frame. 23 hours from onset I had my chemo; talk about cutting it close. I am so very thankful that my ambulance driver had a lead foot! Haha. The nurse that they sent with me for my trip was amazing; she kept me comforted the entire trip. The only thing I can’t figure out is how my husband got to London and was waiting for me at least 20 minutes before the ambulance and I arrived; apparently he drove fast down the 401……We will call him Nascar Pat from now on.

Once I became a bit more stable they decided to transfer me back to Windsor to finish my treatments. Day 12 I was sent by ambulance to Met Hospital to the Cancer Floor. The isolation rooms are amazing! The nursing staff is second to none. I remained there for 26 days before I was released to go home for a break before the next round of chemo. During this time I was visited by many and had several individuals call, text and email me. I feel bad knowing that I did not respond to many of the out reaches but to be completely honest with you; I was exhausted and stressed about my condition. I had just 12 weeks before this episode underwent liver surgery to remove the right side as there was a neuroendocrine tumour. That surgery btw left me cancer free……for the first time in 10 years. Now that I got leukemia I felt deflated and well, many other emotions ran through me. I never had a pity party or questioned why this was happening to me …..but when you are throwing up, feeling dizzy, having extreme diarrhea it is hard to have the energy for visitors. I also lost my hair very quickly, so here I am 96lbs bald and oozing from every hole……who would have wanted to witness that anyways?

One person in particular did; Patrick. He never left my side. Even when he had to go back to work, I could count on the fact that he would breeze into my room tea in hand for me followed by a kiss and a “you look beautiful today”…..each and every day. He heals me with his presence. It is amazing to be able to reach that time in your relationship when you are tested in the areas that matter so much…in sickness and in health, for us apparently it is both.  I will continue with more of the journey tomorrow, I want to end on that note since I seem to be happy and smiling just thinking about Pat and I at the hospital and how the 2 of us managed to find humour in all that was happening to me.

Btw- the expression life is too short, well if I was healthy and had the energy to do something I would in a heartbeat. There are so many things we take for granted each and every day. It is a privilege to be healthy and able bodied. Please do something that makes you happy or gives you peace, it is fall and the weekend looks like it will be beautiful so ……..oh and if you happen to see a goose or hear one wave at it for me. Love all of you and thank you for reading my blogs.

~Christine~