Sunday, October 5, 2014

So Far so Good....

On Friday I began a new round of treatment. Although they refer to it as chemotherapy this treatment in particular has no chemo agents. The majority of the chemical make up is arsenic. The side effects with this protocol are quite different from traditional therapies. Although some side effects are typical for intense the sore tummy and mouth sores...the majority of side effects are heart related. Of course I did have some issues starting out but according to the cardiologist I am managing the treatment so I have the green light to go ahead. Each day I begin with an EKG prior to having my treatment, if all looks good they proceed. So far I have had 3 treatments and so far so good; mind you I have 81 to go. The first 28 treatments will be given while I am hospitalized and the rest I will have to go to the cancer clinic each day.

I am sitting in my bedroom right now at home writing this; as my oncologist surprised me with a day pass. After a got my chemo today he asked me how I was feeling, and since I was tolerating everything so well....they said I could go home for a few hours. Now on such a fantastic fall day I was beside myself to dress and head home. I ran into the house and started to prepare a fall dinner where once again I will am fortunate enough to sit and enjoy with my family. What a blessing! It is amazing what a few hours with the ones you love can do, especially when you get to be in your own environment. It certainly makes my resentment of the hospital be less obvious. I am a fortunate girl that is for sure.

I may not always be able to handle the treatment protocol through out the next 81 days so I will take advantage of the days I can. I know that it makes it easier on everyone else knowing I am ok. My poor mother is a wreck so when I called her today while on my way home I could hear the relief in her voice. Since Friday I have already had a wealth of visitors which has been a complete blessing as it makes my days go by so much faster and makes the day brighter for me. I am in a much better place to handle this even though I am still scared shitless. I am still a bit pissed knowing that leukemia is still present despite all the heavy chemo I have already endured but the doctors have said that there is a 98% cure rate with the arsenic, and a 60% chance it will not return within the 5 year mark. That to me sounds good.

I am not sure how many days I will as great as I do today so I am savouring my pass and enjoying some great cold fall weather and my dinner with the fam jam..... 3 down 81 to go.

~Christine~

Wednesday, October 1, 2014

Last Day of Preparations,




I am scurrying around the house today getting all the final details done as I prepare for my month long stay at the hospital. I am not sure why I am worrying so much about the condition of the house but I can’t help myself. Groceries done, laundry complete, floors washed, suitcase packed and now I await the dreaded tomorrow.

I first have to have blood work and a CT scan before the oncology meeting, then up to my room…. Where I will remain for the next 4-6 weeks. God knows how much I dread this. I just started to feel a bit normal being home after having been there since June 12th of this year. I know it is my last round of hospitalization during my treatment protocol. The next 2 rounds will also be 28 days but I will have a 3-4 week break in between and will be allowed to go to cancer clinic every day for the treatments. I should be thankful that there is one more option for me but for some reason I can’t look past the fact that I will be away from my house and the heartbeat of my family going about their daily routines.

I love to hear the girls in the house no matter what they are doing. Even the fighting (lol). I also will miss my lil Sara who follows me everywhere I go, but mostly I will miss my Patrick. Yes he visits me each and every day but it is not the same. My favourite part of each and every day is to snuggle up to his back when we retire each night. He heals me. He makes my pain subdue just by telling me how proud he is of me…. Uggg a month.

The treatment I am about to have is dangerous. If it is successful I will have a 100% cure rate, however this treatment attacks the heart and that is why I need to be hospitalized for the first round. I will be monitored very carefully during this period. I am scared to be honest with you. The only other options are to start the process of chemo all over again ….going back to June OR a bone marrow transplant and I am not interested in asking anyone to do that for me as of yet. I feel horrible that someone would have to endure that. Do I have willing participants? YES…. But at this point I would rather follow the lead of my oncologists and take the chance of 100% cure rate. I can’t be sick anymore. I have to get better so that I can move on with my life and get back to doing all that I was doing before this God Damned disease entered my life.

It was not an easy decision to make but in the end I have to believe that my oncology team know what they are doing and I trust Dr. Hamm …literally with my life. Right now it balances in their hands. It is difficult letting another person have control over you but…..there are no choices here. So tomorrow arsenic will run through an IV and will begin its job of healing me. (I ‘ll toast to that) The entire process will last until mid Feb of next year. Then maybe I will be able to write about being cancer free and maybe just maybe start planning my HOPE party that should have happened in June of this year. Wouldn’t that be something?!

So now I am off to make a special dinner for the family so that I can stare at my husband and kids and take from them the energy I need to face all of this. After all they are the reason I am fighting so hard. I NEVER EVER want to be absent for anything they go through again. Graduations, weddings, and awe grand babies………There now I have great thoughts in my mind and the excitement needed to go to the hospital and GET BETTER!

Thank you for all the well wishes and reading my thoughts. I will keep blogging during my stay and update you on all the exciting treatments and procedures.
Love ~Christine~

Monday, September 29, 2014

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~

Sunday, September 28, 2014

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 29th 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~


Saturday, September 27, 2014

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 2nd……… 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 4th 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 24th I was able to go home after having been in the hospital since the 12th 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~