Showing posts with label Hodgkins Lymphoma. Show all posts
Showing posts with label Hodgkins Lymphoma. Show all posts

Wednesday, December 31, 2014

Goodbye to 2014

"Tomorrow is the first page of a 365 page blank book. Make it a good one." Brad Paisley

As we get ready to say goodbye to 2014,
we reflect not on the difficulties we faced but the realization that we are so incredibly blessed with wonderful friends and family who have shown us every day how much we are loved. Thank you. We look forward to 2015. We are a changed family. For the better.


In the spirit of New Year's, we wish that you.....

Listen to the words you always wanted to hear,
Turn the phrases that one day you wished to repeat,
Feel the emotion that always waited feel.
Walk by the rails that one day you wished to follow,
Divide the way with whom you have always wanted to share,
Embrace all the friends you have always wanted to meet.
I wish from the bottom of my heart:
That every time that your dreams flow away, they come back.
To a life overflowing with achievements,
' fly in the journey of love '
In this New Year be happy in your dreams
And have the good fortune to get them.

Thank you to Nicole, my oldest friend for the inspiration behind these words.

2015 will be the year of the bucket list, of living life to the fullest and taking advantage of every moment. Stay tuned for the first page of our 365 day book. ABC New Years!! 

Thursday, October 23, 2014

The Icing on my Cake - Not just Remisson, Going for a Cure

The blog has been quiet during the past few weeks and that's a good thing. While I love sharing all of the wonderful happenings in our life and updates about my journey, normalcy is something I have craved and the lack of updates mean life is slowly returning back to a "new normal".  Each day I spend time regaining strength and I take enjoyment in simple tasks that have been absent the past six months. While I have considerable strides to make in terms of my energy, strength, fatigue and endurance, I see small improvements daily.

I have been learning to live as a survivor. Anxiety and worry are new feelings that I am learning strategies to manage and keep at a distance with assistance from counselling support and the nurse from Cancer Care Path. The worry of the cancer returning will be at a peak in the coming months and will lessen with each week and positive test result. But it still remains.

I recently had a CT scan of my neck, chest, pelvis and abdomen. I saw Dr Stevens yesterday for the results and an update on my bloodwork and recovery from chemotherapy. The CT scan results showed that there continue to be improvement in my cervical lymph nodes (neck) with "sub-centimetre shoddy nodes" which I have been assured means scar tissue left over from the enlargement. The lymph nodes in my armpit continue to be resolved. There is no indication of any lymph node involvement in my pelvis or abdomen and all organs appear to be normal. The mass that is in the mediastinum area of my chest has decreased. I was a bit disappointed to hear that it's size is still 7.5 cm x 2.9 cm - 3 months prior it was 7.5 cm x 4.4 cm. Dr Stevens said in the medical world particularly when we are talking about tumours in the chest area, a decrease of 2 cm is significant. He was pleased with the results and said we are moving in the right direction and in his words "it's all good".

Dr Stevens, (being the thorough doctor that he is) explained that he would like to refer me to see a Radiation Oncologist who specializes in blood cancers and has a vast experience with lymphoma and treating it via radiation. Dr Steven Sagar works out of the Juravinski Cancer Centre and is going to give Dr Stevens his opinion on the costs/benefits of radiation therapy as an additional treatment to ensure me the best chance of an eventual cure. Dr Sagar would like me to have a follow-up PET scan in the next couple of weeks before my appointment so that he has confirmation that I continue to be in remission or whether there are lurking cancer cells (which is unlikely) that have surfaced since the end of my chemotherapy; we need to know that definitely before we can proceed. Dr Stevens said he doesn't feel that there will be active cancer cells based on the CT scan and my lack of symptoms however we need to be exactly sure. Of course, this will continue to cause me anxiety and worry leading up to the PET scan. If there is any indication of active cancer cells, radiation will be a certainty and we will "zap" those cells!!

My bloodwork results were fantastic! My white blood cell count, specifically my neutrophils have already returned to normal range! This is quite remarkable considering they were 0.1 - they are at the low end of the normal range but they have revived. A great sign. My immune system is still compromised and I need to continue hand washing, sanitizing and staying away from illness where I can. My other blood counts were all within normal range except for three liver counts that continue to be elevated. This is very normal after the type of chemotherapy I have endured and Dr Stevens expects that they will come down in the coming weeks/months. I have a follow up appointment with him on November 14, 2014 to check in on the bloodwork and hopefully by then the PET scan will have been completed.

I am realizing that being a cancer survivor is almost more difficult than being a cancer patient. I have been struggling with the emotional/mental aspect of my recovery and while I know this is very normal for cancer survivors, I have been surprised at how much the worrying thoughts occupy my mind. Having the PET scan will bring peace of mind but the worrying of the "what ifs" leading up to the scan will be difficult. The good part is that I recognize my worries and have many avenues to voice them and talk my way through the scenarios.

I know that whatever comes my way in the next few weeks and down the road,  I will be able to face and overcome it. As the quote says, my track record for getting through difficult times is 100% so far. I can make it through anything. In the meantime, I am so enjoying life, my family and getting back into a routine where I can be apart of my kids lives, driving them to their sports, going to Cam's hockey tournament in Cleveland, watching gymnastics training, I am on my way back to being the "hands on mom" I have always loved being. This weekend we will celebrate my birthday and I will take joy in all the amazing blessings we have and am grateful to feel as strong as I do. I will continue to kick cancer's ass and work to regain my strength and endurance. I take comfort in knowing that I am in good hands and have doctors who are being thorough and paying attention to the icing on my cake - not just remission, a cure.

Tuesday, July 15, 2014

Believe

"No pessimist ever discovered the secret of the stars or sailed to an uncharted land or opened a new doorway for the human spirit" ~Helen Keller

Positivity and believing is said to be related to recovery and the human spirit. While I have definitely had moments of fear, doubt and darkness I have truly believed that I am going to be ok. I received the wonderful confirmation of this last week.

I received the results from my oncologist from my CT scan of my neck and chest as well as the PET scan results. A PET scan is used to detect cancerous cells in my body. The CT scan measures any enlargement of lymph nodes through my chest and neck area. I am thrilled to share that the PET scan shows "No abnormal hypermetabolic activity demonstrated post 3 cycles of ABVD to suggest active residual disease specifically no abnormal hypermetabolic activity at the anterior mediastinal mass."

The CT scan shows that there remains a mass in the medistinum area which lies in the middle of my chest between my heart and lungs. It has reduced to  2.8 x 4.6 x 7.4 cm. There has been significant improvement in the reduction of the mass size but more importantly is that the PET scan shows that there is no longer cancer cells in the mass. I loved the analogy used by Dr. Stevens, my oncologist.

He said the mass in my chest is like an apartment building that everyone has moved out of. We got rid of all the"riff raff", the mass is like a frame with nothing inside of it. Our job is now to burn that building down and make sure that no "riff raff" can move back in (cancer cells)

The plan is to complete all 12 treatments of chemotherapy to best ensure no chance of relapse and an eventual cure. Technically I am said to be in remission and this term will be used for the next five years as that is how long I will need to be cancer-free to be considered cured from Hodgkins Lymphoma.

So I soldier forward with my treatments. The beginning of Cycle 4 was yesterday, so 5 treatments remaining which will take me to the end of September. The side effects continue to be manageable. The fatigue is the most crippling issue that I am dealing with and the effects will be cumulative, gradually increasing as the treatments continue. I do have a considerable number of "good days" thankfully, and I am enjoying them to the fullest.

Thank you to Jason's parents for their unwavering support, and enabling us to enjoy the cottage life, being by the water has been such a rejuvenation for me. Having our dear friends Kristen and Karsten there with their boys made for the best celebration weekend after we received the news of my remission. I look forward to a week of rest, as we have my cousin Darcy's wedding this coming weekend which I aim to attend even for a small portion of the festivities. I have learned to take one day at a time, not put a lot of pressure on myself, rest when I need to and take it as it comes. The good with the bad. Knowing there is an end to this part of my journey and new ones waiting for me down the road. xoxo Love to you all.


Thursday, July 3, 2014

The Good, The Bad and The Ugly Part 3

The Good - "Hope is beautiful." 

I am quickly leaving Cycle #3 behind me. The half-way mark of my 6 month chemotherapy treatment. It seems hard to believe,  as when I first started this journey I have to admit 12 treatments certainly seemed unattainable and overwhelming. Approaching it one treatment at a time, one week, one day has made the mountain seem much smaller as I look back. Of course, the forward horizon of six more treatments to go seems insurmountable but I know that I have the strength and perseverance to get it done. 

Wonderful experiences like I had today make facing these treatments a little bit easier. The good in the world shines through on a daily basis when facing a cancer diagnosis. My best friend Carole and I attended a Look Good, Feel Better Workshop at the Grand River Cancer Centre today. There were two other brave women at the workshop and it wasn't long before we were laughing and comparing chemotherapy stories as we tried on makeup products, wigs and scarves. It made the scary process a little less so, when you know that there are others going through the exact same thing as you are. We were blessed to have an army of volunteers with tips and tricks to use to help us feel beautiful and attractive despite the annoying side effects that come along with cancer treatment. Thank you to those women who give their time to provide this wonderful program, once again we are so fortunate to have these resources available to us so that we don't feel alone in this journey. Thank you to Carole for coming with me, our shared life experiences of eyebrows, zits, makeup expiry dates and lack of knowledge made me laugh and your tears of empathy made me cry. It was exactly what I needed today.

I also wanted to share a resource available to us through our OTIP teacher's pension plan and our ETFO union. It is called Cancer Care Path. After a phone interview and consent forms were signed, I have been matched with an oncology nurse, MF who has 27 years experience at Princess Margaret Hospital with lymphoma/hematology patients. She arranges weekly or bi-weekly phone sessions with me to answer any questions I have, help me prepare questions for the oncologist, review symptom management with me, provide emotional support and counselling. She has access to all my records at the Cancer Centre and has presented my case to an Oncologist who will help make recommendations on treatment, follow-up and will stay connected with me during my recovery once treatment is completed. I find myself looking forward to her phone calls and have quickly established a rapport with her that I am finding so comforting and helpful. She is a voice to me that I can ask questions that I may forget to ask at my oncology appointments, or feel silly asking. She has given me strength and helped me with those "what if" questions by reviewing all the positive outcomes I am experiencing with my treatment. One more cheerleader for me who just happens to be a qualified professional, once again, how fortunate I am to have such a great support system.

The Bad - "Scan-xiety"

June 30 was not only my 6th treatment but was also a repeat CT scan of my chest and neck. The CT scan will show the whether there are lymph nodes that continue to be enlarged, the oncologist will compare the lymph nodes to the scan done back in March when I was first diagnosed with lymphoma. As well, it will show progress on shrinking (eliminating) the 8 cm mass in my chest in the mediastinum area. Understandably, I am trying to not let my anxiety come through in worrying about the results of the CT scan. In my heart, I know this to be true. 

I have not had one night sweat since I started treatment. I have not had any fevers, my itchy skin has disappeared and I can no longer feel any swollen lymph nodes in my neck. None. These are all wonderful signs that I am responding to chemotherapy. My heart knows this to be true. I know that there will only be positive news. My heart knows this. Sometimes my head gets the better of me and I ask those "what if?" questions. The what-if questions are unfortunately what I am going to have to live with for many years to come. The conflict between my head and my heart, and my gut will be my greatest struggle.  Next week, the PET scan will provide further confirmation of where the cancer cells still lurk in my body, the knowledge of exactly how much of the battle is left for me. I will have scans done every three months and then every six months once I complete treatment so this "scan-xiety" is not going to go away. Please be patient with me as I work through this. I will let all of you my loved ones and army of supporters know the results of these tests when I am able to. Thank you for your continued words of support, encouragement and positive thoughts. It means more to me than I am able to adequately express to you.

The Ugly - Anticipatory Nausea

I am going to share with you one of the most difficult side effects that I have been dealing with recently. It is a lesson in Psychology 101, remember back to university days friends. Classical conditioning and Pavlov. As my next treatment day approaches, I am beginning to become more nauseous and unconsciously anxious about having to face side effects all over again just when I start to feel back to my normal self. Since I have had a few experiences with chemotherapy my brain has established the pattern that goes along with it, knowing what's coming understandably I want to avoid this pattern. The negative stimuli being the nausea, groggy feeling, saline taste in my mouth when they flush my picc line... these are all triggers for me. What I have learned is anticipatory nausea is very very real. I am actually feeling real nausea based on my previous experience. I really had a taste for it this week and it was not pretty. It was downright something I need and want to avoid. We are going to try some new tactics next time. I have been doing my research and I am going to be better prepared after a great talk with the wonderful chemotherapy suite nurses. I have realized that you need to speak up, ask for help and advice and not be afraid to "do whatever it takes to get yourself through it" as Sandra (oncology nurse) says.

Thank you to Jason and a compassionate company by the name of Hoerbiger.  We have wonderful news to share that Jason will be starting a new position in two weeks time as an ERP Specialist. An amazing company who agreed to Jason working part-time for July and August to allow him to continue to focus on my recovery. He will begin full-time in September. This change may result in our having to call upon those of you who have offered to help us out with driving kids etc. We will be sending an email out with some dates where we may need some assistance picking up Jordan from her gymnastics training. Thank you in advance for your friendship. Thank you to my aunts and uncles and extended family who continue to send cards, emails and phone calls. Even though we don't see each other as often as our friends in daily life, we love you and feel your support and positive thoughts. It takes a village to raise a child and somewhere along the line, you helped raise me up and provided a role model for me growing up. Thank you.

Thank you! Half-way, couldn't have done it without you!

Sporting a new scarf, hair is slowly thinning out.



Wednesday, June 18, 2014

Cheers to the beginning of Cycle #3

CHEERS - "Sometimes you want to go
Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name."


How very different 3 months can make. I am now part of the Cancer family at the Grand River Cancer Centre. A place that I never envisioned I would visit so often. A part of a group that I never thought I would be apart of. I so vividly remember the fear I felt walking through the large wooden doors and lining up to register back on that cold March day. No clue where to go, or what to do. I was spinning and lost. 

Fast forward to this week. I am greeted with "Michelle!" and a huge smile. Joking with the familiar faces, "I'm back again." Up the stairs, check in with my on-line symptom reporting kiosk, wave to the nurses at the registration desk in the chemo suites, back to the PICC line blood draw, sign in, wait for the time it takes to process my bloodwork. Waves to my favourite nurses, a hug from one in particular. We bonded the day that I wasn't able to receive treatment and she held my hand as the tears of disappointment came. It is such apart of my life right now, this special place. The place that is healing me. I need them. There are usually the same amazing volunteers who work in the chemo suites, never stopping, always checking in with us, do we need juice, water, icechips, gingerale. Offers of hard candies or crackers are always there, let me get you a heated blanket, tucking it around my feet. I have learned the comforts from home to pack. A larger cup so that the volunteers don't have to get ice for me quite so often, a pair of cozy socks to keep my feet warm, healthy snacks, change for parking, my stack of magazines, my i-pad and of course my phone. Texting back to my friends who are all checking in on me knowing that it is treatment day. 

Monday I was at the Cancer Centre for my bloodwork and my appointment with Dr. Stevens. Tuesday, was my 5th chemotherapy treatment, technically called Cycle 3A. My appointment with the oncologist went very well. Dr Stevens, exclaimed, "look at how slim your neck is!" The lumps in my neck are barely palitpable, they have shrunk significantly. We go through my side effects, how I am feeling. He continues to say how great I am doing. I can tell he is quite shocked that I still have a pretty full head of hair, he assured me that it does not indicate whether the treatment is working or not.  Everyone responds differently to chemotherapy and in time I will most likely lose all my hair or most of it. I can atest that it is coming out all over my bathroom floor on a daily basis, but not in clumps like I envisioned. I will ride this out as long as I can. We discussed my blood results and most tests are in the normal range. My neutrophils continue to hover around zero but his plan is to continue status quo as I am feeling well and do not have a fever. He said that recent studies indicate that putting me on Neuprogen (the injections for white blood cells) is not advisable with the type of Chemo drugs I am receiving (ABVD) - the B drug can cause lung and breathing issues (which I don't have) but the chance of problems increases x20 with the Neuprogen shots. I was thankful for this, as the daily Heparin injections are enough for me. There are two other tests that indicate that my liver is slightly inflamed but this is also normal for my type of chemotherapy. Platelets and red blood cells are perfect in the normal range.

I have two appointments coming up that I am looking forward to but also cause me a little bit of "scanxiety". I have a CAT scan of my chest and neck on June 30. This test is a repeat of the CT scan I had before I started treatment so they can compare the size and swelling of the lymph nodes in my neck and the mass in my chest. Then on July 8, I go to St Joseph's in Hamilton for a PET scan. You will remember back that I had a Gallium scan, this is a similar test but thankfully doesn't take as long (holding arms above my head for 45 minutes) This scanner is more up-to-date, Grand River doesn't yet have a PET scan machine. This test will show with a radioactive tracer, where cancer cells still appear in my body. I see Dr. Stevens on July 11, for the results of these tests. I am excited to hear that the cancer is leaving me but understandably anxious. 

So while I realize that my new "normal" involves being on a first name basis with the staff of the cancer centre, it has become my new family. The rooms in the chemo suite are filled with others whose "troubles are all the same". I look forward to the day down the road where my visits become less and less but I will be forever changed by this experience. 

Thank you to my amazing staff who continue to check in with me and send me pampering treats in the mail, the Straus family for cooking for us, they inspired Jason and I to bake our own rhubarb loaf, with rhubarb from the cottage. My dad and my mom who is recovering from a cold and will hopefully be able to take me to a chemotherapy treatment in July.  Jason's parents for taking care of us this past weekend at the cottage and giving so much love to the kids. Jordan got to spend the weekend with Grandma, they both needed some grandma love this weekend. Angie from Hopespring who calls to check in with me to see how I am doing. I also need to give a shout-out to our ETFO representatives, I am so grateful for the support and immediate assistance I have received with every question. Stay tuned for my wonderful experience with Cancer Care Path. A service available to ETFO members that is unbelieveable.

Michelle 5 Hodgkins 0 - almost half way there!! Love to you all. xoxo 

Sunday, May 18, 2014

Michelle 2 Hodgkins 0

As I have said before, "you never know how strong you are until you have no other choice." The same can be said for my daughter Jordan. As she clearly shows in the scrapbook pages she created for me soon after we told her of my diagnosis. A writer like myself, she found phrases and quotes that illustrate, how we are ready for this battle and are going to win the fight.

I had an oncologist appointment on Thursday with another doctor who was covering for my own doctor. Dr. Campbell quickly showed that she is a caring, patient and knowledgeable doctor, eager to answer questions and provide me with comforting information. She examined me and was very pleased to tell me that she believes I am responding extremely well to my chemotherapy treatments. The lumps that were prolific on my neck are disappearing. One has to go hunting to find them now, after only two treatments. My response to the chemotherapy and toleration of the side effects is also very positive. I can expect that the next rounds of treatment should progress much the same as the first two. Everyone responds differently and I am not to necessarily assume that the treatments will get harder or more significant. My bloodwork is coming back just as expected and the heart monitoring tests done came back "perfect". An appointment full of hope and positivity.
I will enjoy our bonus long weekend in Southampton. Hikes, spring flowers, baltimore orioles, shopping trips in town, chinese food, relaxing times. I rejuvenate for my next chemotherapy treatment. I feel strong and ready. My picc line is bothering me a little bit, some pain near the incision site. I hope that it is routine and nothing to worry about. Tuesday, my Aunt joins me for my treatment. The first time that Jason has passed the reins on to another care-giver to support me. Thank you to the friends who have brought us meals the past few weeks, the best friends who continue to feed me muffins and soup and provide me comfort. The visit, laughs spent at Martinis, old friends who know me so well and whom I can be myself. There is nothing like spending time with those who know where you came from. As Jordan said,  I am winning the battle, we are ready for the fight, I have my biggest fans with me and we will do everything in our power to win this. Jordan, your words inspire me, so far, Michelle wins round 2, Hodgkins 0. 


Tuesday, May 6, 2014

Picc line and Chemotherapy #1B - First Cycle complete.

"Faith is taking the first step, even when you can't see the whole staircase." Martin Luther King

You know that you are in the best possible place for care when you enter the chemotherapy suites for what will prove to be a long day and you are greeted with a hug from the nurse who tried to get your IV going on Friday with the words, "Michelle, I thought about you all weekend, tell me about bonus weekend." While I don't always know what's ahead of me, I feel comforted in knowing that I have such wonderful, caring people helping me walk up those stairs, every step of the way.

I had the added luxury for the day of having my own private room in the chemotherapy suites. Hazel, an experienced nurse would be in charge of my bedside procedure to have the PICC line installation. PICC line stands for "peripherally inserted central catheter". Essentially, this is thin hollow, flexible tube that is threaded through a vein in my arm up across my shoulder area to rest near the superior vena cava vein near my heart. It is a sterile procedure that can be done bedside with many pre-cautions. I was fully suited up, covered in draping as was the nurse. She calmly explained very single step to me as it was happening. I was given a local anesthethic and although this numbed the pain, I was in some discomfort and needed to employ some deep breathing and ceiling watching to get through the most uncomfortable part. 

 
The Cancer clinic does have the benefit of a special ultra-sound machine that makes the placement go much more smoothly, this machine was purchased around Christmas time however it is shared with other departments and not available on Monday. Another example of where our donation dollars are directed. Hazel has done many many of these procedures without the ultra-sound machine and her expertise was evident. I being quite tall needed 55 cm of tubing to reach my chest area. In trying to find the correct location there was prodding and guess work on Hazel's part. We had a few hiccups, where the tubing ended up curving upwards towards my ear rather than down towards my heart. She flushed the line out and I heard water running near my ear, a very freaky feeling. So out came the tube and we had to do it all over again. I said a prayer to the man upstairs for this to work and no other complications to arise. My prayers were answered and we had a successful install. 

I was then taken down to x-ray for a chest x-ray to ensure it was properly placed. This took no time at all. Soon I was back in my private room with a heated blanket and gingerale. We had to wait around 90 minutes for the Radiologist to write a report on the x-ray and give the go-ahead for my chemotherapy to proceed. In the meantime, I got to watch a video explaining everything you need to know about Picc lines. CCAC came to visit me as I will be having a home care nurse visit my house once a week to change the dressings on my Picc line. Being that this is a direct line that comes outside my body, we have to be very careful with infection etc. I also have some limitations in what I am able to do around the house, particularly repetitive motions with my left arm and reaching up high. Unfortunately the Picc line had to be put in my left arm, and being that I am left-handed, its own set of challenges. Since I had surgery on my right underarm, and there is a fresh incision they couldn't use that vein as it would pass through the scar tissue from the surgery. The line will remain in for the next 6 months, swimming could pose a challenge! I will have some sweet tan lines!!

My chemotherapy was a bit shorter than as an in-patient, around 3 hours total. Faith was my nurse for administering the chemotherapy, we talked and chatted the whole time and the 3 hours passed quite quickly. I came home and had already made dinner on Sunday so we could all sit down together and enjoy a meal as a family. I am feeling quite fatigued, little nauseousness, thankfully the medications do such a good job of preventing alot of the nausea, as long as you keep up the dose they recommend.

I started reading a great book and look forward to sitting on our deck today and enjoying our backyard. I would love some other book recommendations, I am typically an avid reader when I have the time. CCAC is coming to change the dressing today but other than that, it is a day to take care of me. Thank you for your continued love and support. We look forward to a reunion this coming weekend with many of Jason's life-long friends. Taking care of the care-giver is just as important as my own needs. Those families, his buddies and their wonderful spouses bring me great joy when I watch the reminiscing and laughter among friends.

 

Saturday, April 19, 2014

How Am I Feeling Today?

"Positive thinking isn't about expecting the best to happen every time but, accepting that whatever happens is the best for this moment, this day." 

I arrived home from the hospital around 4:30 Friday. It is a strange feeling expecting to feel different but feeling the same. I kept expecting for something to happen, a nervous anticipation. We usually celebrate Good Friday with our dear friends who we affectionately refer to as K and K. Cam was at their house with the Buche boys, three brothers who are truly like brothers to him. We decided to collect Jordan from her girlfriends and because I felt well enough, let's go with our original plan until my body tells me otherwise. It was so wonderful to be in a full house, with lots of action and good feelings. I am forever grateful for what they bring to our lives. We enjoyed an awesome dinner of baked salmon, basmati rice, asparagus and fresh bread. We had a great visit and I felt surrounded by love and laughter. After dinner, my tummy was starting to get a little queasy and cramped up. I expected that something was going to happen. Everyone knew that when it was time to go, the exit towards the door would happen quickly. We graciously left, thanking them for a wonderful few hours. I took my next set of medications and got myself set up in bed, i-pad, phone, Netflix really can Good Friday after a great meal get any better? Well no soon enough, I was fast asleep. Woke up for a nausea medication around 10:00 pm, and slept straight until 6:00 am, then again until 9:00 am. I awoke with little to no nausea. My body needed all that rest and I felt pretty good. I definitely notice a metallic taste in my mouth along with a very dry mouth sensation. A mild headache that Tylenol took care of. Today is a day for reading and reflecting on the mountain of information I have received about Hodgkins. Mundane tasks of laundry and tidying are keeping me busy and I appreciate having the strength to do those things. The sun is shining and we are going to go for a short walk soon. I will take each day as it comes. Knowing from my conversations with the knowledgeable nurses, the next few days will be perhaps a peak of the fatigue that I may be feeling but everyone responds so differently that possibly that won't happen in the same way for me. There are quite a few pre-cautions and things I need to watch for and have been given strict instructions to go directly to emergency for, particularly if I have a fever  at all over 38.0 C. This is why it is so important that not only myself and my family practice handwashing and sanitizing religiously. It is also very very important due to the nature of my cancer and immune system as my white blood cell counts will drop dangerously that I do not come into contact with infection. Our visitors will need to be careful to use hand sanitizer when they come in our house and we are not able to have anyone over with a cold or who has been sick. They could not stress enough to me. Which is why there was not any discussion with the Oncologist about my stopping work during chemotherapy. The risks are far too high. As he said, in a supportive, caring manner, "You don't have a choice, you want to live". 

I am happy to report that the right side of my neck which has been very painful and tender to touch, no longer hurts all. I can even confidently say that it feels like the lumps have shrunk a bit. There is definitely way less pain!! Under my arm where the biopsy was is definitely healing fine, the swelling has gone down and it doesn't seem quite as achy. Part of me wonders whether this is all wishful thinking in my head but I will take it!!

I take this journey one day at a time, uncharted territory. Thank you for your continue love and prayers this Easter weekend. Give thanks for your health, you family and how blessed we truly are.

Hospital Stay and Chemotherapy #1A

"People are like stained glass. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within" Elisabeth Kubler-Ross.

I will start off with this quote on a card from a beautiful colleague. While you hid in the anonymity of secret bunny. I know who you are. Thank you.

  Let me start off by saying that this blog while a great way to update our friends and family on my kicking Hodgkin a$$, I would say that it is more for me to journal and keep track of each day. Days become mixed together and blurry when you try and look back. This is particularly helpful when it seems like everyone new nurse, doctor or clinic I am asked to review and timeline how I got to where I am today. So that being said, feel free to read, comment which I would love to hear who is reading this, but there will be posts that are lengthy and I know you are all busy and I am trying to share without it being "too much information", I know you are busy and have full lives, as we do

I was admitted to the 6th floor Oncology unit at Grand River Hospital Thursday night, not because I was sick and need to be hospitalized but that was the quickest and most efficient way to get my first chemo treatment started. I also need one more test completed and this was faster accomplished as an in-patient. I went through the whole admission process and then I was pretty much on my own, an easy patient considering all the very sick people who unfortunately filled the 6th floor. I marvel at the nurses, they literally don't stop and it is a job that I am thankful there are so many caring individuals who choose this profession!! When I tell them that I am a Special Education Teacher, they comment, "I don't know how you do that". Well I say the same for the nurses and other staff in the hospitals and cancer clinics. I wouldn't say my sleep was all that restful with lights on, people talking and a very sick patient next to me but I did manage to sleep a bit.

I was awoken at 6:30 am to have bloodwork done, good morning! I then lounged in bed, waiting as I knew I was being taken sometime "first thing in the morning" for a CT scan of my abdomen. I guess they needed this done to make absolute sure there aren't cancer cells anywhere in that area even though I already had the gallium scan. I waited and dozed off until around 8:00 am. The nurse was looking into when this would be happening because I couldn't eat until after it was done. Glitch happened in that someone when they entered the request order said I was an out-patient not an in-patient so the CT clinic was waiting for me to show up. Not going to happen. Oops. So around 9:30 I was brought two huge water bottles to drink, some concoxtion of iodine and water. Didn't taste too bad, I had to drink one whole bottle between 9:40-10:00 then another bottle at 10:10. I was taken around 10:30 for the test which was uneventful. I am getting pretty good at laying with my arms over my head, not moving for long periods of time.


My IV was started prior to the CT scan to get me ready for my chemo treatment. The nurse had a bit of trouble finding a vein. After three rounds of bloodwork in two days, it was a bit tricky. She mentioned that I may end up being a candidate for a Port-o-cath, which is a permanent spot where they can hook you up to take blood and give IV chemo. She managed to find a vein in the crook of my right elbow. I ate some breakfast and Jason brought me a coffee from Tim Horton's (Thanks Secret Bunny) Yes, I asked about coffee, no problems if I want to have a coffee in the morning. Coffee is one thing in my day that makes me pretty happy. Debra was my nurse for the day, a lovely lady. She explained and answered so many of our questions, even though I know how incredibly busy she was. I also learned that chemo is quite a process.

First I had two bags of anti-nausea medication drip down into my IV. Then Debra comes all geared up, full gown, gloves, two masks and special waste disposal that everyone in contact with me goes straight into. The first medication of ABVD therapy was Bleomycin.  This drug is "pushed" through the IV by the nurse, takes about 5-10 minutes. The next drug given was a red drug in appearance Doxorubicin. This will make your urine appear red. Fun! This was also given my injection. Next I had a bag of Benadryl drip through which took a good 15-20 minutes. This made me a bit sleepy. Normally when I am an out-patient, I will be told to take Benadryl at home before I come. Next was the third drug that is pushed through was Vinblastine. Then I had a bag of Saline solution drip for a little while and had a bit of break, where I had a short snooze. Jason sat and read and played video games, chatted with me through all this. It was so nice to have his company. The last medication was Decarbazine which is in a bag that drips through the IV, it takes about 60-90 minutes. At first, I had alot of pain all up and down my arm that the IV was in. She stopped it, ran some more saline through injection and then slowed down the drip it helped a little. Still very painful and achy almost like I had put my arm in something really cold. She wrapped my arm in a warm blanket and that helped. I chatted with Jason, texted friends and tried to read a magazine, hard when I couldn't bend my arm. All in all, the chemo started at 12:00 and ended around 4:00, I should expect it to be a bit faster as an outpatient. Soon after that I was discharged with my medications to take at home.

I have three medications to take at home. I take Ondansetron twice a day for 3 days as an anti-nausea prevention drug. Then Allopurinol which is once a day for 21 days, this helps flush the toxins out of my system and help my kidneys process the medications. I need to drinks lots and lots of water and clear fluids all the time. The last medication is Prochlorazine which I can take up to 4 times a day for the more severe nausea. I have only had to take this once so far. I am also allowed to take Gravol which isn't quite as strong. I have Tylenol which I can take for pain or fever. I haven't had any fever issues yet and did take some Tylenol for very achy legs, that I had last night.

I will explain more of my reactions and lovely side effects post-chemo in the next post. Thankfully, they have been very minor and I so far on Day 2 can say Michelle 1 Hodgkins 0. Take that cancer!!!


Wednesday, April 9, 2014

Lymph Node Biopsy Update

One more step forward. I arrived at St Mary's Hospital at the ungodly hour of 6:00 am. Once again, so fortunate to have such an up-to-date, beautiful facility at our doorstep. The nurses got me all set up and prepped for the surgery. The lymph node excision was uneventful as far as I can tell. I was at the hospital for about 6 hours in total. Much of the time was spent in recovery. I believe the procedure took around 1 hour 15 minutes to complete. My right under arm is pretty bandaged up and very sore. I am listening to the advice of the nurses and taking the pain medication as directed. It is definitely helping. Ice packs and a pillow under my arm are making me much more comfortable. The waiting continues. They don't expect the results of this biopsy to be available for at least a week. The reason for this biopsy is to confirm the type of lymphoma I have, namely Hodgkins Nodular Sclerosis which is what they are pretty confident it is. As well, I have not heard the results of the Gallium Scan. I am making an assumption based on telephone conversations that this is not likely to be shared with me over the phone. My next appointment is not until Thursday, April 17th at the Cancer Centre. I plan to call again to inquire about whether that appointment can be moved up at all. The waiting is the hardest. I am anxious to get things started. I know that we need all the pieces of this puzzle called my life in order to plan the treatment, I'm trying hard to remain positive and take each day as it comes. Luckily Jason is my sounding board,  he is my voice of reason. There are times where I let my anxiety get the best of me and worry about the what ifs, he brings me back to the now. I am grateful for his love for me today and everyday down the road.

Friday, April 4, 2014

Survivor

"You never know how strong you are until being strong is the only choice you have."

Survivor is one of our families favourite shows. Often we are not able to watch on Wednesdays, but we gather around the tv together when we find the time and catch up on episodes. I always marvel at the immunity challenges where the competitors have to stand on a small pole for hours, or balance something without moving or dropping it. You can see in their faces when they show how much time has lasped that they are using all of their strength to hold on and be the last one standing. That is much of how I felt today.

A gallium scan is a test of strength, patience and one's ability to breath through it and make it until the end. I am thankful that it is broken up into two parts. The first part seemed long enough. 22 minutes lying on your back, not being able to move at all, with a flat table over your face about an inch away from your nose. You go through the machine so it scans your whole body, moving every so slightly until you reach your feet. I took a little longer because I'm fairly tall. After a quick break, the real true Survivor test came.

Not only was I lying on a very narrow table on my back,  in a hospital gown. I had to place my arms over my head with my wrists crossed, they used a piece of tape to hold my feet together. Somehow I imagined myself in this position in more of a Fifty Shades of Grey scenario than a scanning machine... Not so much. I closed my eyes as the camera circled around my body in 40 second intervals, I imagined those Survivor contestants holding out for immunity, their muscles screaming at them like mine were. At around 30 minutes, the technician told me what a great job I was doing. Only 10 more minutes. Are you kidding me? Somehow I breathed through it, my eyes needed to be closed for the last part where a CT machine also took pictures. It was hard not to feel a bit of panic. Then I also imagined the many other people who have gone through this test before me, sicker than I am, older and not as strong as I am - they made it through, I will too.

The end point, my prize for holding strong until the end, not moving and damaging the scans is the ability to see inside my body and determine where the cancerous cells are. Have they travelled past my diaphragm putting me into a more advanced stage of cancer? The results will arrive to my doctor by Monday.

I received a call that I have a referral to an oncologist, I am grateful of the compassion of several professionals who understood the importance of attending Paul's service combined with the reality that seeing the oncologist would be more productive when they had the results of the gallium scan and the biopsy that I have on Tuesday. We are hoping to hear that I have an appointment with Dr. Bonnie McCarron at the Cancer Centre on Thursday, April 10.

Once again, I need to express our extreme and humble gratitude to Jordan's gymnastics training centre, Revolution Gymnastics. The kindness of the owners extended to our family leaves me without words. I take comfort in knowing the support and love that Jordan will receive from her gymnastics family. I look forward to my parents visiting this weekend. The troops are rallied, the fight is near. We could not do it without all of you. xoxo

Monday, March 31, 2014

Facing Emotions

"We cannot direct the wind but we can adjust the sails."   

Today has been a day where I have been both embracing and overcoming anger. I am adjusting my sails as I am learning that I cannot control the direction that this journey will take me. It's hard not to let frustration, anger over this happening to me and anxiety to "get going" take over. 

After a quick appointment for the gallium injection at St Mary's, I met with the surgeon who will be doing the lymph node biopsy. Once again, what you expect when you go to the appointment turns out very differently from the story you painted in your head for yourself. I have said several times, I have been nothing but grateful and impressed with the efficiency of the specialists in booking appointments for me and communicating results. It has been done in the most caring and expedient of ways. 

I will be having a lymph node biopsy of a node in my right armpit, the whole lymph node will be removed on Tuesday, April 8 during day surgery.  This is the safest procedure with the fewest risks. Removing a lymph node from my neck or collarbone regions carry risks of damaging nerves connected to my spinal cord area. While I am thinking general anesthetic is not a bad way to go for this, it involves a more lengthy recovery and pushed the surgery to next week. Looking for the silver cloud, as I continue to try to do. It allows me three uninterrupted days of work this week and am opportunity to celebrate the life of a loved one.

So the waiting period continues, allowing me to live a semblance of "normal life" as I know it now. Thank you to my oldest friend who came this weekend for a much needed visit and a basket of my favourite things. What a joy to have a friend who knows you so well that she can choose a variety of items that comfort me, inspire me and give me hope. Thank you M#1.

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