Hurdles to Jump and Chemotherapy #2A

"True strength is smiling when you want to cry, laughing to hide the pain and going on no matter what."

Over the past week I have been dealing with considerable pain near my Picc line entry point and alongside the Picc line. It was a burning pain, tender to touch, went down my arm and over the weekend it became apparent that it was also becoming a bit swollen. I tried to not complain or really talk about it at first but I realized it wasn't going away. My first instinct is that I don't want to tell them when I go on Tuesday for my treatment. I put a heating pad on it at my parents over the weekend, did research on the internet and decided of course in the end, that I needed to let the nurses know. Advocating and speaking up in regards to my experiences has carried me far. Of course I am worried that this will be a setback with my treatment.

Turns out, the nurse immediately noticed that my arm was swollen, when prompted, I told her that yes I have been in pain, she measured the circumference around my arm and was on the phone to my oncologist to find out how to best proceed. Since she was able to flush out my picc line, it was determined that the suspected clot did not involve that vein. The nurse was able to feel the side of my arm and we could feel a bump which she inferred was a blood clot. This was relayed to the doctor and he gave permission for the chemotherapy treatment to start. My Aunt soon joined us and was great in making sure I was asking all the right questions to find out the next steps. The nurse said they were trying to get me an ultrasound appointment immediately following treatment and I would have to wait until the radiologist interpreted the results. Unfortunately, they radiology department called back and couldn't get me in until today (Wednesday) at 7:45 am. Then they needed to check this out with my oncologist to make sure it was ok for me to go home and come back in the morning, knowing that there was a risk that I did have a blood clot. Thankfully, I was able to go home and returned this morning at 7:30 am for the ultrasound.

The ultrasound went smoothly and we were out in 45 minutes and back home to wait. I quickly realized the anxious feeling that I spent most of the month of March feeling. Worrying about test results, the unknown, anxiety. I was grateful to have visits from two treasured friends today. A former colleague came for a "too short" visit with a wonderful dinner for our family, great magazines to pass the time and a gorgeous flower arrangement, thank you, your friendship is so special to me. My dear friend Lisa also came to join me for lunch. I so appreciate friends taking the time from their busy schedules to comfort and provide me with support. It helped pass the time of waiting throughout the afternoon, which ended in a wonderful nap.

Finally, Dr. Stevens called me at 8:15 pm from the hospital. Apologizing that he was not able to get back to me until then. The ultrasound confirmed that I do have several superficial blood clots, superficial meaning that they are close to the surface of the skin and not "deep vein thrombosis". It is not uncommon to have superficial clots near the Picc line insertion. Mild swelling and discomfort are to be monitored but not as concerning as swelling towards the top of my arm up where there are deeper veins where a clot could potentially travel to my lungs. I do need to begin taking one aspirin a day and have to return to see the oncologist on Friday for my arm to be checked and for Dr Stevens to see my arm for himself and make a decision on whether a different kind of blood thinner may need to be started. This would involved daily injections and support from CCAC.

So another hurdle, another jump over the river of lymphoma treatment and I land relatively unscathed on the other side. I continue to face the side effects of my third chemotherapy treatment. I am well-equipped and have a better plan to come out ahead of some of the more unpleasant annoyances. I do feel fatigued, much like a continuous hangover or flu. But I know what's coming and it is a very predictable pattern thus far.

Michelle 3 Hodgkins 0

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. 

Grateful Jar

What are you grateful for today?

Christmas 2012, I decided to make Grateful Jars for some of my closest friends. It was a gift that money couldn't buy, made from the heart and something small to let them know how much they mean to me. I decorated mason jars and attached a small label with a task, "write down all the things you are grateful for throughout the year with your family and friends and open the jar at the end of the year to read them." One family in particular "K and K" often open their home to many of us and we all gather there, spending many Friday nights, meals, special occasions and girls nights in their kitchen. The grateful jar comes out at all hours and it became a group grateful jar. Often I would send small slips of paper in the mail to be added to the jar. Surprises and reminders of all things great. This past December, we took our families tobogganing and booked a night where we would open the jar and read all the things our group of friends and K and K's family had been grateful for throughout the year. We included the kids and maybe had to censor a few of the later night thankfulness slips of paper. The kids loved it.  What a joy and honour it was to be able to look back throughout the year, laugh and realize how many wonderful moments we all shared.

The grateful jar at K and K's has taken on a whole new meaning this year in 2014. In fact, K had to discover a larger container to accommodate the growing slips of paper that we all have contributed to the jar. There are so many gifts we are grateful for. Things often taken for granted to me have become something worthy of writing down. Rather than write thank you notes to K and K for all their love and support to me in my recent diagnosis, I have been sending them slips of paper of gratitude and thanks for the love they bring our lives. The 2014 grateful jar has become Michelle's thankfulness and gratitude jar, lovingly stored in a place of honour in the K and K kitchen on Upper Blucher.

Even though I am facing this battle with cancer, I continue to find so many reminders and reasons to be grateful. I need to find the rainbows in the storm. I can't wait to look back in December 2014 and read all the slips of paper outlining my journey and I hope and pray that I will be grateful to be in remission at that time. I would like to share a few gratitudes today, on May 13, 2014.

I am grateful for:

The blessing of Jason being free of the pressures of work during the beginning of my treatment and the soul task of caring for me, I am thankful everyday for him.

The resilience, maturity and independence of my children, who are able to fill in the gaps when I am not able to, cheer me up, and cheer me on. Jordan created scrapbook pages that touched my heart and filled me with pride. She is so strong, much stronger than I give her credit for.

The diagnosis of a cancer that is not only treatable but cureable. There are so many others facing much more difficult prognoses, my heart goes out to them. I am thankful that I will be one of the lucky ones and as the oncologist said, "I have a good cancer to have." (There is no good cancer we know that.)

The number of times that I have heard the words "I Love You". Three words that not everyone uses on a daily basis with friends or even family. You really don't know how loved you are until something like this happens to you. 

 A sense of humour and the ability to find laughter. Whether it's joking about being thankful I was blessed with so much hair (losing my hair is taking longer with me than most) or laughing about some of the not so pleasant side effects I face. I am grateful for friends and my family who can somehow find the exact right time to help me find ways to laugh.

The timing of my cancer treatment in that I get to face this in the sunshine, with my kids off school for part of it, that we can take advantage of our surroundings and I am able to spend some time at the cottage, my parents, the schoolhouse and not looking out into dreary cold and snowy weather. The simple act of going for a walk, watching the birds on my deck in my backyard is therapy for me. 

Lastly, I am thankful for the gift of TIME. Time to spend with my husband. Time to appreciate small things that I was far too busy and took for granted. Time to spend with my parents. Time to spend with my best friends. The bonus weekends and bonus days that I will find throughout my treatment where going to the movies is a big deal or being well enough to go out for dinner is suddenly the highlight of my week. I am thankful for time. This is one thing we all feel we don't have enough of. After I am finished treatment, I know that this will change forever. I will be grateful and much more appreciative of the time I get to spend with all of you.

So ask yourself today, what are you grateful for? 
 

Smiling Eyes

"Whenever there is a human in need, there is an opportunity for kindness and to make a difference" Kevin Heath

The Smiling Eyes Project is a non-profit group of Professional Photographers offering complimentary photo shoots to people/families facing cancers fight or victory. Over the years, we have had the privilege of having Christine Kufske of Click Photography take our family photos, she is also the founder of Smiling Eyes. We contacted Christine in order to have our family photos taken with Jason's parents. Jason's brave mother Diane has also recently faced a cancer diagnosis and we knew it would be a perfect Mother's Day gift to have our pictures taken as a family. Christine is an amazing individual, putting everyone at ease and capturing the essence of the love we share. I cannot begin to tell you how much this opportunity means to me. It is with great pride that I share some photos from our session. What amazing young individuals our children have grown up to be. I can't wait to see where life takes Cam and Jordan. With such wonderful support and family, I know they will go far. Thank you Christine for giving of your time and gathering other photographers to join you in providing this opportunity. You are making a difference in the lives of others.

I would like to also take this opportunity to thank my own mother for her support and strength she has passed along to me. She is always a quick text or phone call away and I look forward to spending next weekend visitng my parents, at one of my favourite places on earth, Southampton.

I am weathering the storm of my last chemotherapy, there is much predicability and I am prepared for what came my way. I hope that I am on the upswing and can enjoy the coming week before I face it all over again.

Adversity and Strength

"The flower that blooms in adversity is the most rare and beautiful of all."

I received these flowers from a dear colleague. With the spring we have had, these arrangements have hung on through frost, snow, rain, wind and still continue to bloom and thrive.  I look outside our french doors each morning to see new blooms and the bright colors in the morning sun. Even when covered in snow and wilted from the cold, when brought into the warmth, the flowers re-vived and reached upwards towards the sun.

As I face the days after my second treatment, I find myself continuing to move forward and re-vive, even in a few dark moments, I see myself returning and gaining strength once again. After I awoke this morning and realized that my hair was beginning to shed on my pillowcase I decided to take control and let go of things that I can't change and focus on the things I can. I wasn't quite ready to take drastic measures and shave my hair. But I asked myself, how can I minimize this and transition into the next phase before my hair is completely gone? My wonderful friend Michele immediately responded to my request and in the warm sunshine on my deck, we trimmed off my hair and created a whole new look. It may last a day or a week but all the mattered was how it made me feel today and that my friends is happy and strong. "Happiness is a decision you make, not an emotion you feel." and today I choose happy.

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.

 

Minor Setbacks - Adjusting Expectations

"Things turn out best for the people who make the best of the way things turn out." John Wooden

Lesson learned today. What you expect to have happen may not always turn out that way. I arrived at the Cancer Centre, mentally and physically ready for my chemotherapy treatment. I had my bloodwork done, completed my patient assessment and settled in for a hour+ wait for bloodwork to be processed and have my new patient appointment with the pharmacist. Many of you who know my personality know that I am a planner and organizer. The process of mapping my life out to coincide and work around my upcoming chemo treatments had already long taken place. My expectations had been established.

Once I settled into my comfy chemo recliner, it became clear early on that the veins I have been gifted with were not conducive to IV insertion. Reinforcement nurse specialists were brought in, arms were wrapped in warm blankets, tapping and elastic bands utilized. Not happening. ABVD chemotherapy regime is a combination of four very highly toxic drugs. Only certain veins are able to withstand and handle these drugs travelling through to reach the tumours and cancer cells. Use a weak vein, the toxic drugs are at risk of leaking into your tissue and muscles risking permanent damage. I learned this first hand after my in-patient experience, the last drug that travels through the IV has ended up causing some damage in the vein they used, resulting in quite a bit of burning and discomfort in my right arm, rendering that vein no longer useable. I was aware that it is going to be difficult to establish an IV and had planned to discuss at an upcoming appointment with Dr. Stevens. I did not however, envision that this would be a cause of postponing my treatment. I didn't arrive with that as an option. Realistically I know that fluctuations in blood levels can result in your chemotherapy being postponed but I did not count on this being a factor as they had figured it out on the oncology floor when I was a patient.

In consulting with the oncologist on call, Dr McCarron, the recommendation is that I receive a PICC line. "A PICC line is a long, thin, flexible tube known as a catheter. It’s put into one of the large veins of the arm, near the bend of the elbow. It’s then threaded into the vein until the tip sits in a large vein just above the heart."A PICC line can remain in your arm for up to a year. I will require weekly CCAC nurse visits to change the dressing and there will be other inconveniences with showers etc but the benefits far outweigh those.
At one point, it was discussed that I may be a candidate for a Port-O-Cath. The downfall of this is that it requires surgery and general anesthetic. It is much more invasive and typically more used for long term treatment plans, with my chemotherapy being approximately 6 months, a PICC line is considered a more preferable option. And, more importantly, I am able to have the procedure to have the PICC line installed on Monday morning. I am grateful for the caring nature of the nurses who were attempting to find a solution to my disappointing setback as they were able to somehow re-schedule the chemo treatment for the same day on Monday afternoon. 

So back to my originial quote. "Things turn out best for the people who make the best of the way things turn out." What are the positives that I can take away from this? First, once again, I feel so incredibly blessed that Jason is not working and able to focus full time on my care. Setbacks such as this would be incredibly stressful if he were having to take time off work and then the treatment not happen. We have the flexibility that we can roll with whatever new scheduled times they give us and adjust our sails accordingly. Our children are old enough that we don't have to arrange care and we can exercise our flexibility in dealing with new timelines, with the help of our friends who are able to step up and assist with getting Jordan to gymnastics. Thanks Michelle, so appreciated. 

Second, I have a weekend unexpectedly that I can enjoy the time with the kids and our friends. I have a wonderful night of girl time, movie and buttery popcorn ahead of me tonight and dinner at friends to celebrate a birthday tomorrow night. Rest and relaxation on Sunday to get me ready for Round 2 on Monday. Third, the PICC line will allow me less pain, hassle and stress down the road. Bloodwork and chemotherapy treatments simplified. I will be much more comfortable and we won't have to deal with my veins hardening, with lifelong damage. If a PICC line was in my future anyway, might as well deal with it now then two or three treatments later on. 

Another positive is that my bloodwork did not show any major concerns. It definitely showed that my white blood cell count is quite low, in particular the neutrophils. All this means is that I need to be extra cautious about infection, hand washing and ensuring that I try not to come into contact with coughs or colds - while still maintaing a life and living in the community. It is an awareness not a quarantine. 

And so here I am. My experience today is one of learning. Learning to adjust my expectations, deal with disappointment in a healthy way, learn to not look too far ahead, embrace the positives and continue to remember that the nurses have my best interests at heart and that decisions will be made out of my control that I don't necessarily like. It's how I react to them that matters. 

Thank you to an anonymous card that arrived with a gift card in the mail, your words were just what I needed to hear when I opened the mail. Thank you to Michelle who continually shows me what a true friend she is. And to my care-giver Jason, you are the calm to my storm and I wouldn't be able to do this without you by my side.