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?

What is Neutropenia?

This week I completed my second cycle of chemotherapy, each cycle being 2 treatments. The treatment went smoothly and I have been recuperating up at my Aunt's schoolhouse near Collingwood. The country fresh air, relaxed atmosphere here and how beautiful it is,  nurtures my soul.

While at the hospital for treatment, I have bloodwork done each time and I did learn from the oncology nurse that I have severe neutropenia.  "Neutropenia is an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections, particularly those caused by bacteria and fungi." My neutrophils are at zero! So you can't go much lower that that.

If you have severe neutropenia — fewer than about 500 cells per microliter of blood — bacteria normally present in your mouth and digestive tract can cause infections. So being that I have zero cells in my blood, I am greatly at risk for infection. I will need to be extremely careful with hygiene, hand-washing, hand sanitizer and choosing to go to functions where there are larger crowds. I have been instructed to take my temperature twice a day and if my temperature is above 38F then I need to go directly to emergency. I got the message that there no messing around with this as it can be life-threatening if I have an infection that is not immediately treated.

Since I have been feeling well and have not had any signs of infection, Dr. Stevens allowed my chemotherapy to proceed despite the neutrophil levels. They will continue to monitor my bloodwork and there is a possibility I may need to have daily injections of Neupogen in addition to the Heparin shots I am already giving myself. I will see the Oncologist on June 16 and will find out the next steps in terms of how they are going to treat the Neutropenia, or whether they will just monitor me.

All things considered, I am coping with the side effects and taking each day as it comes. I am grateful for the time I am spending here at the schoolhouse. We have had walks, lunch at Lora Bay, a trip into Collingwood and patio time at the Firehall Pizza, one of our favourite places to go in town. I have been sleeping great and while I am tired, I feel ready and prepared for the next few days that I know will be difficult.

Jordan has had a busy few days, she competed at the County Track Meet last night and came in 3rd place in the High Jump. Today, Jason and Jordan left early to drive to Oshawa to the Reach for the Top Invitational Competition. Jordan came in first place on the Bars and second place on the Beam. She was also awarded a special award for "Best Free Hips" on the Bars. It is not recommended for me to be surrounded by such large crowds with my current bloodwork standing, I am sad to miss the chance to see Jordan and cheer her on. She knows and understands that I am her biggest fan and am there in spirit. I need to limit my contact where I am able to and while it is hard and I am disappointed that cancer is getting in my way, I know that it is only temporary and will be worth it in the end.

Seriously? A Blood Clot?

"Welcome to the unexpected in life, I am learning to bend with grace."

Just when I think I am coming out of the fog of Chemo Round 2A,  I am side-swiped unexpectedly. I was asked to return on Tuesday for a follow-up ultrasound to check in on the superficial clots around my picc line. My arm was the one part of my body that had been feeling better, there was no more swelling, the pain had pretty much gone. I expected a routine ultrasound, no big deal. It was the same ultrasound technician as last week and the first thing she said was, "You still have a picc line in?" Hmm, that doesn't sound good. It soon became apparent during the ultrasound that things were not going all that well. I was asked, "Do you have an appointment at the cancer centre today?" No. Then she had to leave the room and said she would be right back. Ok, freaking out a little bit here!! She returned and had gone to speak to the Radiologist. Not so good news. She let me know that I had a clot in the vein of my Picc line that has now travelled up towards my shoulder. I had no symptoms of this, no pain, no swelling, no redness. They asked me to go over to the Cancer Centre to see Dr. Stevens and he would need to decide what to do. They would send over the report right away. Heart pounding, I text Jason (who is in the parking lot so we don't have to pay for parking) and off we go to the Cancer Centre again.

Once again, how thankful am I that I can walk ten steps and arrive at my oncologist office?

Off we go, "We're back!" I arrive at Clinic B and it wasn't long before one of the nurses is looking at me, she's on the phone to the ultrasound radiologist and I am back in an examining room. It was about an hour and Dr Stevens is with me and we are coming up with a plan. So blood clot in the picc line vein, "not a good thing." We ran through some options, all not real viable. He consulted with another blood cancer doctor and a decision was made based on the following:
- the Picc line is working for me and the clot was blocking about one-third of the vein right now
- I need the Picc line for my chemotherapy treatments, it is part of saving me
-if they take out this Picc line and put another one in chances are, that there will be another clot - something that is not entirely uncommon with Hodgkins and blood cancers
- the same thing could happen with a Port-o-Cath - and you can't see the signs as easily
- since I had no symptoms, it was caught early - a good thing

Starting immediately (yesterday), I am now going to need to have a Low Molecular Heparin injection in my stomach, once a day. This is a blood thinner that will work to prevent more clots, help break up this one and prevent this one from moving anywhere dangerous. They gave me my first shot at the hospital and within 30 minutes, CCAC is there setting up a home care nurse to come today to teach me how to give myself the injections. Can you say overwhelming? We went down the pharmacy to fill the prescription. My bathroom is really beginning to look like a pharmacy. We have hazardous waste containers, syringes, medications. The heparin shots are also very expensive. Once again, how grateful are we to live in a country and have a career with such amazing benefit coverage. We are truly blessed.

So here I am. Coming out of the haze of my last chemotherapy treatment. Finally starting to feel somewhat myself. Dealing with a few residual side effects. And now, I am faced with this next hurdle. I will need the injections for the remainder of my treatment. But think. There are many people facing diabetes who live with his for a lifetime. It is just something I am going to have to do.

I am thankful today for a beautiful sunny day and the opportunity for both Jason and I to watch Jordan at her Divisional Track and Field Meet. The smile on her face and wave when she saw that we came is worth all of the hardships I face. I do this for my kids. Jordan placed first place in high jump, third place in standing long jump and was on the 2nd place Tug of War team. She goes to the Country Finals next week for High Jump! We are incredibly proud!

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.