Chemotherapy Secrets

Recently, a former high-school classmate asked if I had any words of wisdom in terms of what my husband did to support me in my cancer treatments. The role of the care-giver is such an important one. I owe so much of my recovery to my husband and I am forever grateful for him. I began to think of all the amazing ways he just knew how to help or what I needed.  But I also began to think about everything I learned about chemotherapy and living with cancer that the nurses/doctors don't always tell you or that you read about but don't really know first hand if they work or not. I have heard many times that everyone responds to chemotherapy and treatments differently, and that what helped one person may not necessarily help someone else. When I was first diagnosed I went searching online and read many cancer blogs of others just like me, writing their stories. I was looking for the magic insight or answers on how to make it better.

These are just some of the discoveries I made during my 12 treatments of ABVD chemotherapy treatments. The side effects vary depending on the drugs that you are given, the side effects manifest in varying degrees individually. I am not a doctor and am only sharing this as a cancer survivor, these are just a few of the things that I found worked for me. These are listed as they come to mind, in no order of importance or significance.

1. Favourite food and drink no more! : I was warned not to eat some of my favourite foods or drink during and immediately after I started my first chemotherapy treatment. At the time of my first treatment, gingerale was my go-to drink of choice. After my first treatment, I began to associate the taste of gingerale with the nauseous feeling and to this day, I have not been able to drink gingerale again. I also craved salt because of the steroids I had to take before each session, I would eat salted almonds or mixed nuts. The sight of them makes my stomach turn, it was only recently that I tried them again and I have to say they taste good once again!

2. Mouth sores be gone: After my first treatment, I had terrible mouth sores, terrible sore gums and achy jaw. I read online that you can suck or chew on ice chips to reduce the blood flow to your mouth. I decided to try it the next time. I mentioned it to one of the nurses and she immediately agreed and said "oh yes!" - why don't they tell you that? So I chewed ice, sucked on Iced Cappucino's from Tim Horton's and what a major improvement. I don't know if it was all in my head but I faithfully did it. It did not make them go away but they didn't seem as bad. Leading us to #3!

3. Magic mouthwash: As soon as I experienced the first mouth-soreness, I did call my oncology nurse and she immediately called a prescription in to the pharmacy for "magic mouthwash". It is amazing. Not covered by my medical benefits but so worth it. It coats the inside of your mouth, tastes alot like cherry Vicks. I highly recommend it if you are dealing with mouth soreness.

4. Anticipatory nausea: About half way through my treatments, I realized that I was beginning to get very nauseous a day or two before my treatment. It was explained to me that it is a real thing and cognitively I was beginning to associate the approach of my treatment with the feeling of nausea. I encourage you to recognize that it is a very real feeling, it is not in your head. I was prescribed Ativan for this and it really helped. I suggest you speak to your oncologist about this as you are not imagining it!

5. Fatigue and sleep: Once I gave myself permission that I needed to sleep and rest whenever my body told me to, I found it was much easier to accept that it is very much apart of treatment. I tried to make sure I had a shower and got up in the morning, which helped me feel better. But as the day progressed even by mid-morning I often needed to go back to bed and sometimes I needed to be told this. This is where my husband was so supportive, he at times, "made" me go back to bed and reassured me that it was ok to allow myself the time to rest and sleep.

6. Losing my hair: Losing my hair took a lot longer than I envisioned it would. I am glad that I didn't shave my head right away. One of the best things I did was to have a good friend cut it in a short layered look, which let me stretch it out a few more weeks and enjoy the most awesome haircut! Everyone feels differently about this, once we realized that my hair was coming out fast and furious and I was finished with finding hair all over the house, my husband shaved it in our garage. I was shocked that I lost all my eyelashes, nose hair and hair elsewhere. I think I found losing all my eyelashes the hardest. I managed to keep the shape of my eyebrows which I was thankful for. I highly recommend a trip to the wig boutique at Hopesprings Cancer Centre - they provide a free wig and were very helpful in guiding me through this journey.

7. Drinking water: When they tell you to drink a lot of water, you don't really realize how much water you need to drink. I kept a measured amount (3 litres) on my counter and I had to really work to drink it all by the end of the day. My husband really helped by constantly bringing water up to the bedroom so I didn't have to go looking for it, leaving water bottles piled beside the bed. I firmly believe that drinking the water helped with the side effects

8. Medication: At one point, my bathroom looked like a pharmacy. I have never been one for "over the counter" medication and at first was reluctant to take more than the least amount of medication both prescribed for me and over the counter. Once I gave myself permission to take what I needed (of course staying within the daily dosages) I was better able to manage the side effects. I religiously took the anti-nausea meds and am thankful at how well they worked. One of the nurses told me, don't let the nausea get ahead of you, take the meds every four hours the first few days, don't wait until you feel terrible. I also underestimated what I needed in terms of medication to regulate my bowels and constipation was a huge challenge for me until I followed the nurse's orders and went with the maximum allowed which was obviously what my body needed. I was honest with my oncologist and they were very willing to give me what I needed to get through the treatments. I am happy to say that I have been on very little medication since my last treatment, so it really is only temporary.

9. Benadryl: Part of my ABVD chemotherapy required me to have a 50 mg bag of Benadryl drip between two of the drugs. I soon realized that my body responded with "restless legs" from the Benadryl. Honestly it was awful. They couldn't do anything about the groggy feeling that I had after the Benadryl but they could slow down the drip and that really helped with the jumpy legs. It took a bit longer for the drip to finish but I am really glad that one of the nurses told me about this.

10.Warm blankets! The one thing I looked forward to was knowing that there were warm blankets in the chemo suite. Accept them, replenish them so you have a fresh one. Use them. They provided me with comfort. Jason soon where to just help himself and he would tuck me in for a nice little nap after the Benadryl drip. Such a nice touch.

As I said, these are just a few of the things I learned in my journey thought chemotherapy. I hope it can be of help to someone searching the internet for others experiences just as I did back in April.

Note: I just returned from the dentist to learn that I have a mouthful of cavities. I have been fortunate to not have many cavity issues and have learned that due to chemotherapy I believe it is 7 or 8 that I now have. Chemotherapy causes dry mouth and depletes your body of its natural flouride, hence your teeth erode greatly. I could have possibly reduced the issues by using a non-alcohol based flouride rinse. Lesson learned.

Reflections Post Chemotherapy

This weekend I was skimming through my husband Jason's phone looking for a picture he took of my friend Kristen and I to email to her. I came across this picture and immediately choked back tears. I had no idea that Jason had taken this picture on my last treatment in September as I was sleeping. That one picture brings back so many memories and even though it is now 7 weeks ago since my last treatment, it also seems like yesterday. Jason came with me to almost every treatment and I can't imagine what it must have been like for him to see his wife so sick, so tired and at times in pain. I asked him why he took the picture and he said, I just looked so peaceful and really couldn't explain the why. We both blinked back tears looking at each other because words didn't need to be spoken that describe what we have been through together. 7 weeks later, I am so happy to share that I am feeling really great. I am beginning to see a change in my energy levels and stamina. The days of nausea, aches and severe fatigue are in a thing of the past. Much like the pains of labour that we have stories to tell about, the actual feelings fade away thankfully. While I am nowhere near back to "normal", I have many moments where I can forget what I have been through and find myself laughing and smiling and enjoying my family and life.

I live with constant anxiety that I am getting better at pushing to the back of my mind and not letting it overtake my everyday thoughts. Since I am still waiting for the results of the PET scan last week, my anxiety is running rather high these days. I jump when the phone rings, check for messages and feel that I am living a bit on edge - waiting. I have my appointment Wednesday in Hamilton with the radiation oncologist and perhaps I will have to wait until then to hear that I am still in remission and cancer-free as that is the outcome to expect and hope for.

In looking at this picture, I see how far I have come in 7 weeks. My hair is starting to grow back, I am feeling better every day and I know that I will be able to get through the next phase whether it includes radiation or not. As I said before, my track record of getting through hard times is pretty good, 100%.

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.

What Comes Next?

My last chemotherapy treatment!

Here I am one week past my LAST chemotherapy treatment. It is still hard to believe that I have finished 6 cycles, or 12 treatments of chemotherapy. I remember Easter weekend so vividly going for dinner at Kristen's right after my first treatment. The number 12 seemed so overwhelming and unattainable and here I am. Many of you have asked what happens next for me?

I had my PICC line removed from my arm the same day as my last treatment. It was a very quick procedure, painless and over quickly. It is so great not having to worry about having my line travel with me with every pull and stretch. The other reason it was so important to have the Picc line removed right away is that I have been diagnosed with "deep vein thrombosis" as I have a blood clot formed in my vein around the picc line. I have been taking daily Heparin injections in my stomach to prevent the clot from moving, more from forming and to manage it while the Picc line remains in my arm.

Yesterday, I had an ultrasound of my arm to check on the blood clot and determine next steps. The technician informed me that she was not able to locate a blood clot in my arm!! I am not sure whether she was supposed to tell me this, but she said it was good news. So I am waiting to hear from my oncologist to find out if this means that I can start weaning off the heparin injections. As I hate them!! I cannot wait to stop them!

During the next few weeks I will continue to recover from my last chemotherapy treatment. As I have mentioned previously, the treatments have been harder and harder to recover from. Knowing that next Monday I won't be having to go to the hospital for another treatment will really symbolize a new beginning of recovery for me. I return to the hospital on October 16th for a CT scan of my chest, neck, pelvis and abdomen to compare the CT scans taken before I started chemotherapy and the ones I had at 3 months. While I am nervous of the findings, I have to feel confident that they will show progress and improvement in the mass in my chest. I will also have a full bloodwork done as a major goal is for my blood levels to begin to return to normal. Particularly my white blood cell neutrophils which continue to hover around 0.1. My liver counts were also slightly elevated as well. I see Dr Stevens on October 22, and we will discuss what comes next. It has not been 100% confirmed that I won't need radiation therapy. While I try not to think about this possibility, I have to trust his judgement in making this final decision.

The beginning of my true recovery begins. My strength and energy levels are so weak right now. I continue to deal with mouth soreness, peeling gums, mild neuropathy in my toes (numbness and cold) and the feeling of achiness and fatigue. I long for increased strength and more days where I can begin to focus on my physical and mental recovery from chemotherapy and a cancer diagnosis. Learning how to live as a survivor is also going to be a huge journey ahead for me.

More amazing blog posts coming!! Our weekend of gratitude with our yurting friends at the Pinery and the question that everyone seems to want to know, When will I return to work?

A Jumble

These past few days have been such a mixture of ups and downs, good and not so good. I have been processing and turning around this blog post in my head trying to figure out what I want to say. I knew that I had this need to write. As I have said before, this blog is more of an outlet for me to write and express myself and my own feelings as I continue through this journey that I have before me. I am just a jumble of what I want to say. I am torn between not wanting to sound as though I am re-stating the obvious once again, that I am finding these past few treatments incredibly hard and the fatigue crippling or on the other hand, how I am going to kick cancer's ass and how strong I have been. I am somewhere a jumble in between.

As I sit here today, I am one week away from my LAST chemotherapy treatment. My 12th treatment. A feat that back on April 22 seemed so unsurmountable and overwhelming. And I did it! Yes it has been hard, and yes I do not wish anyone to have to go through this. But I am facing my final chemotherapy treatment knowing that I am in remission and presently cancer-free.

How blessed am I?

So in the dark moments of loneliness during the months of September when everyone has returned to their lives of school and work, I am trying to remind myself that this is a temporary state of mind. I cannot let it get me down. I am almost there. One more treatment to endure, one more jumble of days where I am sleeping constantly, in pain, nauseous and unable to walk up the stairs without help. The sun continues to shine behind those clouds and little by little, day by day I am going to get stronger again. I cannot lose my faith. It will get better.

I also have to say thank you. (See I told you I was a jumble, I'm all over the place here.) Thank you to everyone who takes the time out of their busy lives to send me a text, a card in the mail, bake sweet treats for my family, an extra meal for us, a phone call, a well-placed visit even for a few minutes. Every single one of those special choices makes my day go by a little faster and reminds me that I am not alone in this. There are so many of you who have helped love our kids, make them feel like part of your family, provided drives to gymnastics and hockey. Cancer has shown my kids to be extra grateful to all the people in our lives who love us. It has given them a whole new appreciation of friendship and family. I think both Cam and Jordan are so much more aware of helping others and doing things for other families because we care, because that's what we do. So thank you for being such a wonderful example of love to Cam and Jordan. It has not gone unnoticed. They are very aware of all the wonderful things that have come our way.

Thank you for listening, for reading and for helping me sort through this jumble of feelings, fears and struggles that cancer has brought to our lives.

Timing is everything

I knew that this day was coming. I have endured nine chemotherapy treatments and up until the past few weeks, I have had quite a bit of my hair still. Being blessed with a full head of thick, dark hair and alot of it, my hair loss has been a slower process than many other patients who have ABVD chemotherapy. This week on Tuesday after a wonderful visit with an old friend, I gathered the strength and courage to admit to Jason that it was TIME. Time to take control and shave my head. We set out to the garage and after we both shed a few emotional tears, we just made it happen. No pictures, no documentation. It was over quickly and I have to admit, I felt great and so glad that it was finally done. It was something I felt like I was waiting for to happen for months now. Waking each morning to see more and more hair on my pillow and less on my head has been a difficult process. I almost wish that it had happened more quickly but I was able to creatively deal with my hair with hats and scarves while still having some hair peeking out beneath. It is still a shock to me to see myself in the mirror, having no hair. Getting ready to go out is a quick process, scarf or wig and we are done!

This past week Carole and I had the opportunity to have a retreat to my Aunt's schoolhouse near Collingwood for a few days. It is such a relaxing place to be and Carole and I got some much needed girlfriend time together. I was also nominated this week to participate in the ALS Ice Bucket Challenge by my teaching partner Cailin. How appropriate to be able to do the challenge with Carole and Marilyn at the Osprey Schoolhouse. My dear friend Paul Chambers as many of you know passed away from ALS this past year. I think he would have enjoyed all of the ice bucket videos, my two friend Pam and Tracey are also participating in the challenge. I would have liked to do it with them. What a way to raise awareness for such a debilitating disease. I made the decision quite quickly that I would do the challenge proudly sporting my new "do", really there wouldn't be any other way. I am on my own journey with a disease that is thankfully temporary, quite different from ALS which is permanent. This is a symbol of the battle that I have faced and continue to face each day. So challenge done, posted on facebook and donation to ALS made. I honour and dedicate my ice bucket challenge to Paul Chambers in his memory and I continue to be inspired by the spirit in which he faced his illness as I navigate through the next weeks of my remaining treatments.

Here is a screenshot of my ALS Icebucket Challenge video.

Beauty and the Beast

"Fatigue associated with chemotherapy is like a bad battery for your device... it takes a long time to charge, it depletes for seemingly no reason and no matter how long you charge it at night it just can't hold its charge all day. About mid-day you must power it down to re-charge it, if even for a little bit or it will slow down, freeze up, crash and power itself down on its own."

Fatigue is a very different beast than simply being tired. I cannot describe the feeling of fatigue that I feel on varying degrees every day. When they warned me and I read about the fatigue associated with chemotherapy in all the reading material provided to me on my first visit to the cancer centre, it does nothing to prepare you for how it actually feels. Many people exclaim to me "how good I look" often in surprise. While on the outside, I can function and carry on with simple tasks for short periods of time, only those who truly live with me have seen how quickly fatigue can come on and overtake me. It can come on so suddenly that I could be out enjoying myself one moment and then this deadweight feeling comes that is like trying to walk under water and I need to sit, and go home NOW. There are times where the simple act of climbing the stairs fills me with dread.

I have been relatively fortunate with the side effects I am facing with each treatment, annoyances continue i.e. metallic taste, mild nausea, mouth sores, dry skin, hair loss, but the fatigue seems to be increasing and lasting longer during my off week between treatments. I am trying to rest and sleep when my body dictates and am exercising in small amounts going for walks with Jason, often at times dragging myself around the block. I haven been cautioned that the fatigue will accumulate with each treatment and will continue for months after my chemotherapy treatment is completed.

In my moments of darkness, I become quite emotional, mourning the loss of my energy levels, remembering what Michelle used to be able to accomplish in a day. Our busy busy lives often had us driving each night, rushing to complete errands, going to hockey games, working until 5:30 often many nights. I am sad for the Michelle before cancer and hate the changes that cancer has forced me to accept. I know that my strength will come back, but it is hard not to be frustrated with what I used to be able to do, compared to how hard it is to accomplish small tasks now. One cannot possibly understand this unless you have lived this similar journey. Thank you to those who understand how fatigue is affecting me daily. While I may look "amazing" on the outside, there are days where I am struggling and I certainly have a long way to go in my recovery still.

There are so many wonderful beautiful moments to share with you from this past week.

After some considerable prayers and rest, I was so grateful that I was able to attend the full day festivities for my cousin Darcy's wedding. Darcy was born a decade+ after me and she was my first experience "babysitting" and taking care of a little baby. I loved carrying Darcy around, playing with her and taking care of her. One of my favourite pictures is Darcy and I sound asleep cuddled on the couch after a full afternoon of Cabbage Patch kids and babies. This would be the last wedding of our cousins and it was so important to me that I was able to attend and see my relatives. Particularly since I had not seen many of them face to face since my diagnosis, there were quite a few tears and hugs, relief of my good news and seeing that I am doing "ok". I am so happy I was there. Words can't describe it. I can only hope and wish that I am as blessed as my grandma, Gigi who has been able to attend and see all 6 of her grandchildren marry and find happiness. We had a great time at the wedding, and I was able to stay right until the dance floor was packed and the cousins were having a great time.

Sunday afternoon, my best friend Jenn and her daughter Rosie were home from Calgary and we had a bbq at K and K's reuniting not only a close knit group of adult friends but a group of "yurting" kids who have known each other their whole lives. Heart warming to see them pick up where they left off, Jenn and I were able to have a great visit Sunday night, Monday hanging out and a market trip Tuesday. How I have missed her so. I am so happy to she has found true happiness as well and her blended family is together and complete. Despite the distance, our friendship will stand the test of time. Jordan is looking forward to a 10 day trip to Calgary in August with her "sisters" Maggie and Rosie. 

I am able to travel up to Southampton beach for a stay with my parents this week, Jason will be joining me and we can't wait to have a short getaway at Ben Miller Inn this weekend. A fantastic musician Matthew Hussey is playing at Ben Miller again Saturday night, we loved seeing him a few years back. A great way to spend the weekend before treatment #8, the end of cycle 4 this coming Monday. 

Love to you all, thank you for the visits, had a great catch up with a wonderful hockey mom this week. The week of July 28, there are no kids at the Low house and I would love a chance to catch up with anyone is around. Call or text me, I welcome the company with Jason working now.

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.

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 

The Good, Bad and Ugly - Part 2

The past few days have been incredibly hard. There have been some dark moments where I am waiting for the sun to rise and a new day to begin. A new day promising to be one step closer to regaining strength and feeling better. Each day, each treatment brings me further towards being cancer-free. Is it easy? Absolutely not. Do I try to remain positive, every single day. But there are seconds and there are minutes where I hate cancer, I hate how it's changed my life and how it makes me feel. Just when I think that I can predict the pattern that my chemotherapy treatments will take, something changes and what was manageable becomes harder and I lose just a little bit of control. And I hate that. I hope that as a new day dawns tomorrow that the worst of this round is behind me. I have been struggling with great fatigue, achy joints and bone/jaw pain. I have been sapped of energy and even simple tasks drain me. I am sleeping a great deal with the aid of pain medication and anti-nausea pills, which leave me groggy and drowsy. But, with the bad and the ugly, I can always find the good, the positives that I can take away with this treatment.

The Good: I am one quarter of the way finished. 3 out of 12 treatments completed. Each one is getting me closer to the finish line. My arm where the Picc line is, is no longer painful. The aspirin a day seems to be helping with the blood clots. I have another ultrasound scheduled at the hospital tomorrow for Dr. Stevens to check on how it appears. I have hope that it will be good news. I am fortunate that I have not been plagued with a great deal of nausea or vomiting. It has been much more tolerable than I expected it to be. There are other things to look forward to this week. Visting my best friend J, who is expecting a sweet baby, with my dear girlfriends is something I can't wait for. To be surrounded by those women who know me and where I came from, that laughter will be the best medicine for me. I will also have the opportunity to watch Jordan at the Divisional Track Meet, something that doesn't often happen due to my work and scheduling of provincial testing. I continue to embrace these wonderful opportunities and blessings that arise from being at home during treatment. Thank you to the wonderful friends who visited last week, a coffee, a lunch of soup and salad, a smoothie, stories from school, a note from a student, all ways that my friends are rallying to care for me. I thank you.

The Bad: My hair is coming out much more this past round of treatment. While I am ready with an awesome wig and scarves, I am not sure how much preparation can really help one adjust to this. I hope to embrace it with humour and grace but will need to rely on my friends and loved ones to help me smile and face this change.

The Ugly: The pattern of my treatment is becoming predictable, I am able to prepare for the fatigue, tiredness, insomnia that comes first. Followed by sore mouth and teeth. Followed by body aches and exhaustion and constipation. I am well-equipped and the doctors are taking wonderful care of me, I appreciate all the suggestions from everyone and am beginning to figure out what works and how to best care for the side effects. It hasn't been easy but I know that there will be light at the end of the tunnel.

And so I move forward...there is sunshine, there are new flowers emerging in my garden. I look forward to the sun rising with each new day, reminding me that there are better days ahead. I love each and everyone of you who make my days and nights comforting and filled with hope.

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. 

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. 

The Good, The Bad and the Ugly

I will begin with an excerpt from an email that I received from a dear friend, who while is many miles away always seems to sound like he is right there with us. His advice was timely and as always came at the most needed time.

"When I'm in a running race, and experiencing a world of hurt.. sometimes you have to take your eyes off the finish line, which can seem discouragingly far away. 

If you cast your eyes closer to the ground in front of you, and just keep focused on the next step-- before you know it, you have made a whole lot of progress" K.B

The past few days this is the image that I have needed to draw upon. Day 6 Post-chemo and I have seen my share of the good, the bad and the ugly. Despite my cheery blog posts, there have been moments of darkness where sometimes you wonder how you are going to make it through the next six months. Then you cast your eyes to the ground and focus on the next day. 

 

The Good. I am spending a tremendous amount of time sleeping, 3-4 hour naps and 11-12 hour sleeps at night. Not unbroken sleep, lots of tossing and turning, medications, trying to find a comfortable spot but sleep. Something that has alluded me over the past two months, searching for my diagnosis.  I am listening to my body and sleeping when I feel the need to. The luxury of having days laid out ahead of you with only yourself to focus on healing gives me the time I need to rest. 

The Good. The ability to stay in contact with so many of my loved ones through computer and phone is like a lifeline to me when I am having a moment of weakness. Thank you for being there for me to reach out to.

The Bad. The fatigue and lack of energy, I liken it to having the flu - all the time. Simple tasks seem to large scale and difficult to manage. But I drag myself to the end of the task. A promise I made to myself is to get up, have a shower every day, get myself ready to face the world, dressed in real clothes, I find I feel so much better when I do this one simple thing. I find the sunshine and make sure I stay there.

The Ugly. Mouthsores and sore gums. My biggest struggle the past few days has been an incredibly sore mouth. This is a common side effect. I was told if this happens to call the Triage Line at the Cancer Centre. Once again, incredible care and instant help. There is a Magic Mouthwash. This is actually what it is called on the label. It is a compounded concoction that only certain pharmacies can create. The nurse figured out the closest pharmacy to where we live and called it in, they even deliver! It has been a godsend and turned the ugly into something very manageable. Thank you god.

I hope and pray that the side effects lessen in their strength and virility over the next few days. I have my next Chemotherapy treatment next Friday, May 2. My itinerary for the day includes bloodwork, meeting with the pharmacist, wait for bloodwork results and then finally treatment. A four hour process. This coming Friday I will be having a MUGA scan at Grand River. This test measures the strength of my heart and how it pumps blood. A 2 hour process that I hope goes smoothly. Apparently one of the chemo drugs is incredibly taxing on your heart so they need to establish a baseline so that they can make sure it isn't damaging my heart functioning. This test will be done half way through my treatment to compare results. 

I saw the surgeon, Dr Maurice who removed the lymph node from under my arm today. All is well and I am healing nicely. The stitches have come out and although I will be left with some permanent numbness and nerve damage, I have full range of motion in my arm so nothing to worry about. Still some residual pain but I am told this is very normal.

The kindness of others continues to humble us, we are so very fortunate. I was up for a couple of visits this week, in particular a former colleague who I share so many fond memories of Courtland days, something about that place bonds you together and I look forward to laughter therapy tomorrow with my best friend. We are going to perhaps take a field trip to Hopesprings Cancer Support Centre tomorrow and check out their Boutique. Trying to prepare myself for the inevitable task of choosing a wig and other assorted head coverings that I will soon need. I pray for a sound sleep tonight, safe travels to Jason's parents as they make their way home from a well deserved mini-vacation to Florida and I thank modern medicine for Magic Mouthwash.

Bam! Bam!

Wow! What a day! It started bright and early registering at the Cancer Centre at 8:30 am. I was directed to Clinic B. It was a bit of a wait, where we need to enter our health status in a online kiosk to manage our symptoms. I did learn that I will have Dr. Stevens as my primary physician. He is a Hematologist but also an Oncologist. There was some initial mis-communication as I was referred prior to them realizing I would require a second biopsy to confirm my diagnosis. Hence, first I was referred to Dr. McCarron who was consulting I believe on some of my results. But Dr. Stevens will be in charge of my treatment and who will be steering my ship.

After a lengthy wait and question and answer period with the nurse, I finally met Dr. Stevens. As an aside, it is surprising to both Jason and myself that my history has been re-stated several different times to professionals at Grand River Cancer Centre. First question being, "tell us what brings you here to the Cancer Centre today." I feel as though I answer the same questions. Like don't they document that for someone? I will work on that. I should type up my history so I can just hand the whole story of life to them all ready!! (Type A I know)

Dr. Stevens, how does one describe such a positive, warm individual? He reminds me of a knowledgeable, smart Will Ferrell? And I mean that in a good way. I know you have to picture that in your head! He exudes happy and I felt instantly at ease. He had copies of all the biopsies and tests done to date and explained what each one meant, in very easy to understand lay-man's terms. He explained what my treatment regime will look like if all goes to plan. And the most important part of this post!!

I am being admitted to the 6th floor Oncology unit tonight and after an early morning CT scan, my first round 1A of Chemotherapy begins tomorrow Friday April 18, 2014. I will be having the standard Hodgkins protocol which is called ABVD chemotherapy which is delivered via intravenous. It takes about a half a day to finish one treatment.

The reason I will be an in-patient for this first round of chemo is that the out patient clinic is extremely booked up and this is the fastest way for me to begin my treatment. At this point, we are looking at approximately 6 months of chemo, given every 2 weeks. After this first treatment, it will be given as an outpatient at the cancer clinic. There is a chance it could be less or more, depending on how well my body responds and what a mid-point PET scan shows in terms of the cancer disappearing!!

I had a whole blood work up completed today and will also find out if a bone marrow biopsy is required. Since I am in an earlier stage of Hodgkins, and the cancer did not appear below my diaphragm, if my blood work continues to be in the normal ranges then I will hopefully not need a bone marrow biopsy!! Let's cross our fingers for that!! Eventually in the next few weeks, I will have a heart ultrasound and something called a MUGA scan, these will measure my heart functioning as one of the chemotherapy drugs can be hard on your heart and they want a baseline functioning record.

It was an overwhelming day, so much information to absorb. I tried to ask the questions that I had prepared but it seems like there are new ones all the time. I am keeping track of them and know that they will be answered. I was given a plethora of reading material that I will be reading over the course of the next few days/weeks.

I am grateful that the treatment is starting and that I have been told that Hodgkins is a completely cureable form of cancer. As many people have said, including the doctor today, if you have to have cancer this is one of the more preferable ones to get. Not that I always enjoy hearing that but it gives me positive information to focus on. It saddens me that I will need to be off work for an extended period of time. But in talking to one of my favourite colleagues today, "I don't have a choice." If I want to live, this is what I need to do. This pause in my life allows me to focus on healing myself, loving my family and friends and will no doubt change me and my outlook for the rest of my long life. Stay tuned!! I will update after the first treatment. While I am nervous about the side effects, those (while unpleasant annoyances) will be proof that the treatment is doing what it needs to do.

Thank you to my two best friends who took me out for lunch,  laughed with me and helped me process everything that I heard today. I love you both and don't know what I would do without you in my life. Thank you again to my Secret Bunnies at school. Your kindness leaves me without words.