$4,368.96

 Friday dawned cloudy. I still enjoyed the day because there was no need for me to water the garden beds because I knew that today would be wet (and it is!). I was up at 5:00 and I got busy right away. The house needed some serious housekeeping. Between all the baking and yard work, I had not been keeping up with housekeeping and I hate living in an untidy home. Well, it’s not untidy anymore. I got all the chores done that I wanted to do, and then I called Julie, the Connect 360 person who called me on Thursday. 

I learned from the call that Julie works here in BC. I assumed that she worked in Montreal because that’s where I must call to reach her. They told me that she does not work until 10:00 am local time, so I took Her Highness for our walk early enough to be back home by 10:00. Although I’d left her a message yesterday, I didn’t wait for her to call me. I called her.

I learned that the drug I am to take is called Tezspire—actually, Tezepelumab. I am to take it once a month. It costs $4,368.96 per dose! For my first injection, I will go to a clinic in Nanaimo, where I’ll be taught how to administer the drug to myself using an auto-injector pen like an epipen. Connect 360 can offer me financial help totaling $3,000/year. That’s not even the cost of one injection.

The next step is a three-way conversation between Avi, from Connect 360, me, and a Pharmacare agent. Pharmacare is our provincial health plan. Then Avi will talk with Greenshield, my private insurer. Once those conversations have happened, I will either be approved or we will proceed with other steps to secure coverage for the medication.

Just after my call with Julie. I heard alarming noises. I thought Fred might be going after Ethel, so I got up and sought the source of the noise. I found Ethel in my bathroom on her side breathing very, very fast and her legs were going a million miles an hour. I was seeing her second seizure; her behavior was the same two years ago when she had her first one.

I stayed with her, trying desperately to calm her. She bolted and I followed her. Her legs were not working properly, so I was able to catch up with her and gently pat her and I spoke gently and soothingly to her. Then it was over, and as happened last time, she recovered quite quickly. Twenty minutes later she ate a good healthy lunch, and I went to the vet. I’ll be going back with Ethel on Thursday.

I made a small Napoleon Cake to take over to Ali and Pete. They cancelled their birthday dinner celebration last night because Pete hurt his back. I wanted them to have a little cake to share for their evening. Inside are six thin pastry layers, and between them are three layers of patisserie cream, and two layers of strawberry coulis.

Late in the afternoon, we went to Rollo Park to play fetch. She loves it; I hate it, but it’s good for her to help her lose weight. She doesn’t return with the ball; I must go to her to get it and throw it again. That’s what tuckers me out.

At dinnertime, the sun came out, just in time to disappear behind the trees. Still, it was a lovely end to an interesting day. My heart was beating all day for little Ethel. There were tears yesterday for my demure little friend. I’m glad we’re going to get her checked out at the vet because she is licking hair off her body. It’s not just the seizures that worry me.

•

Four thousand four hundred bucks per shot, and now I have enlisted in a program that assists me to secure the financing of the monthly infusion pen. Avi, the colleague of Julie who’s handling relations with my insurers; he prepares me and advocates for me. He’s been through this exercise many times, I imagine.

He's paid, I think, by AstraZeneca, the company that makes the drug, as is, I reckon, Julie. I’m going to have to talk to him about these upcoming conversations. There’s a lot of pressure involved with these talks. I am being assessed during these conversations with my insurers. My answers will be important. It all adds up to me feeling pressured and that affects me speech. Plus, Avi and the insurance people are all strangers, the hardest people for me to speak with. It's going to be interesting to see how these meetings go.

This is the beginning of a process. Avi and Julie will be my guides. Julieis a nurse and handles the medical side of my journey. Avi handles financing.

When I talked with Julie, she axplained about the drug and the injection pen, and she spoke as though I was going to be getting the meds. That was nice. It made me hopeful. 

Tezspire, the drug I’m after, is a blocker. It blocks a protein that plays a role in causing asthma symptoms. I stay on my puffers, plus I take this drug once a month. Of course I want the drug, but what really motivates me to take it are my pets.

This drama involved in getting the drug occupies a big space in my brain. I’m not happy when life events create tension. I’m very nervous about the upcoming conversations. This ain’t good. I should probably take a Ativan that day. That’s what Dr. Shoja might suggest. She gave me the prescription for just such an occasion. 

I want to have nothing on my mind. I wonder how long this process will go on. Plus, I am soon to have breathing tests at Nanaimo hospital. More strangers. Oh my God, the outcomes of my diagnosis feel like guests you don’t like at your B&B. 

I’m very, very grateful for the services of Avi and Julie. I had to self-advocate to get my diagnosis. Now, I have guides. I am impressed by this support program that AstraZeneca operates. Their site is very informative and practical. I learned much more that my doctors tell me about self-care, and environmental triggers. 

It feels a bit funny to be getting so much guidance and assistance from AstraZeneca. Pharmaceutical corporations are supposed to be the bad guys. My guides are manufacturer’s representatives helping me get money from insurance companies so that I buy a $4,400 drug infusion pen every month. I’m a pawn.

Today I rest. There’ll be no baking, no housekeeping and no gardening. I shall spend some time with Margaret Visser reading about the history of table manners. I’ve lit a small fire and the sound of rain falling on the roof is soothing. I look forward to a comfy day.

Compassionate Care

Yesterday was another lovely day. There was lots of sunshine, and more importantly, it wasn’t nearly as hot as Wednesday. And bonus: I got mail! I got my long-awaited throw to cover the sofa and its cat scars, a survey to complete from St. Paul’s hospital, and boring mail (property tax notice and a letter from Lifeline increasing the monthly cost of my personal alarm).

The day got off to a slow start because I had a spa in the morning. After the rain, the forest fragrances and the birdsong were overwhelming. I was in heaven being in hot water and with my senses in full-reception mode. Once dressed, Her Highness and I went shopping. Hallelujah, Wishbone, a lovely gift and foodie place, had the kind of puff pastry I wanted. I was stoked.

We came home for lunch, then I did laundry and after that, I got started on the cake I’m making for dinner tonight at Ali and Pete’s.  Just as the puff pastry sheets were coming out of the oven, the phone rang. It was a 450 area code, so I thought it was a call I didn’t want. I made a bad decision. When I checked my messages, it was from ‘Julie.’ She was calling from the Patient Support Program called Connect 360, to enroll me at the behest of Dr. Dorscheid.

I called her and left a message. I asked for video chatting if possible and gave her my email. I’m going to stay home all day so that I don’t miss her call, if she calls on the landline.

I Googled Connect 360. This is their statement of purpose: The AstraZeneca Patient Support Programs help patients navigate the complexities of reimbursement and provide support during the journey of their treatment. They run four Compassionate Care programs, I see mine. Mine is for Severe Eosinophilic Asthma (SEA). AstraZeneca makes two drugs for SEA.

I remember vividly getting the asthma diagnosis. Dr. Dorscheid told me. Right after telling me, he told me that there were four kinds of asthma. Then he asked me, “Do you want to know which one you have?” And I said “No.” Yesterday I found out which one I have. I did more reading and discovered that many people need more or different medication as the disease progresses.

And speaking of the disease, I learned that: “SEA gets its name from eosinophils. Eosinophils are immune cells that normally help fight infections. In eosinophilic asthma, their numbers are elevated in the airways, leading to inflammation, which can cause airway narrowing and other symptoms.” 

At 4:30, Dr. Dorscheid’s office called to tell me that Nanaimo General will be contacting me for breathing tests. I have an appointment with Dr. Dorscheid in July 23 to discuss the results. 

I keep thinking about my family. I feel no emotion at all about all I learned today, all but thinking about is how this disease might impact my pets makes me cry.

The Connect 360 program feels holistic. It seems to treat the whole person; it is not all about disease and pharmacology. They provide counseling services as well as medical services. By counseling they mean a broad range of services. On one, I read that I should change my pillows every six months, and that I should wash my duvet every six months.

There’s a lot of focus on informing partners, bosses, close friends, children, etc. They even provide ‘opening lines’ to initiate discussions.

I got a very strong ‘clock is ticking’ message yesterday. It started when I read, ‘compassionate care.’ Then came a flood of “on your journey” phrases scattered through the text. I dodged the bullet with AIDS. That ain’t gunna happen this time. This is the beginning of a story.

Life is Good

I felt back in the groove yesterday. It was a dull day in the morning, and then a brilliant lovely warm wonderful sunny day in the afternoon. Sheba was groomed at nine am, and that had me doing a lot of driving to take her there and then to go back and pick her up. All the rest of the time in the morning, I was watering the garden beds.

I rested over lunch and got back to watering in the early afternoon. It takes a long, long time to water all the beds in one day. At three, Her Highness and I went to Elder Cedar for our afternoon walk. I’d love to run her at Rollo Park, but it’s too hot for any ball playing now in the afternoons. When we got home, I had a spa, of course, and then all were fed before I took my place on the chaise to watch Saoirse Ronan in Chesil Beach. I love Ms. Ronan. I think she’s a great actor.

After going to Nanaimo on Monday and spending much of the day in the car, and the only work I did yesterday was watering, which is really nothing but standing around, I had two days of life without shortness of breath. Today will be slightly riskier because after our walk, I’m going to be raking and toting—and high temperatures are predicted.

Well, I had the best of plans, but the day unfolded slightly differently than expected. On our walk with our friends, I had a seizure that I thought might break my jaw. That has never ever happened before.  Man-oh-man it hurt. And then, when I went to the vet’s to get Sheba’s prednisone—she’s now going down to 5 mgs every second day—I had another one, and the heat of the day made doing the raking and toting absolutely exhausting.

I have a garden bench that has always seemed rather pointless because I had so many cushioned garden chairs. But now I set it up wherever I am working because with a bench, I can lie down while I catch my breath. It’s a very valuable asset for me now.

Even though I watered thoroughly yesterday, the beds were looking parched. I was tempted to water, but it was predicted to rain today so I kept at my outdoor chores until it was time for our second walk, my spa, dinner and a movie.

Hooray! It rained in the night and it’s cloudy and cooler today. Yesterday was just too, too hot (28°). (I can’t believe I lived through our heat dome when temperatures here reached 42°!) I’m glad to have a cloudy day because I’ve to bake a cake for Ali and Pete to take to their place tomorrow where we’ll have a pizza dinner to celebrate Pete’s birthday. He’s a champion, our Pete. He’s the finest of men, always offering help to others.

It's now almost 9:00 am and I see blue sky in the west. I’ll bet it’s going to be sunny and warm again by the afternoon.

Nanaimo Day

By eight o’clock yesterday morning, the sky was clearing. I was grateful, however, for the rain because I didn’t have to water the beds. Her Highness and I went on a morning walk with our friends, and then she and I got into the ferry lineup to head to Nanaimo.

We didn’t have to wait too long for the ferry, but it is Summertime and there are a zillion tourists here now. This morning, I took Sheba in to get her grooming done and I passed the ferry lineup: it was a three-sailing wait. Once on the big island, I went to the pet store to fetch the dried food for the kitties, then we went to get a burger and after that, we did some shopping before catching the return ferry home. Once home, Sheba and I both crashed. She went directly to bed, and I got into the spa for a long relaxing soak.

We all had a bit of a late dinner, and I futzed about on the Internet for a while, and then I went to bed. It was very early, but I was beat, and I had a wonderful night’s sleep. On Friday, Saturday and Sunday nights, I awoke in the morning to chaos on the bed. My bedding was all over the place. It looked like I’d been playing soccer in the night. The pillows were on the floor. But last night, there was no disturbing signs. I have a great sleep every night, but last night was clearly more relaxed than the previous three evenings.

Today I water and I read more Margaret Visser. It’s going well. I’m able to stick to her book and I’m enjoying it immensely.