This week will end

It has been a rough week. After confirmation that my first line of treatment failed, they placed a port on my chest on Thursday in preparation for chemo. I’m thankful that I no longer need to use my hand for IVs, but I’m not a huge fan of this bump on my chest. Not a huge deal. But another visible reminder.

I will lose all my hair with chemo so as soon as that happens, I plan on going wig shopping to find something that makes me feel good. My current wig is fine, but I don’t feel like myself in it. Maybe I won’t in any wig, but I might as well try again.

I’ve been struggling to breathe, experience ridiculous coughing fits and can’t find a comfortable way to lay down with the port. I can’t lay on my back as that is certainly going to cause a coughing fit. And I’ve been on my left side so much that it hurts. Somehow I managed to sleep through the night last night and I am thankful. The night before was awful.

And to add insult to injury, remember the benign tumor they found in my brain in January that they told me lots of people have so not to worry about it? Well, that tumor shrunk during treatment and benign tumors don’t shrink with treatment for cancer so on Tuesday, they’re going to use the gamma knife to blast that away. Fun times.

This week was enough. Next week, I’ll walk in with my head high for gamma knife and to start chemo on Wednesday. We’ll leave this week in the dust. 

Tough News

I’ve been feeling pretty awful lately and its been getting progressively worse which is hard to admit.  Not being able to breathe is suffocating. At night the coughing is horrendous, making me sore and the lack of sleep painful. I do what is necessary and sleep. That’s it. 

I also had COVID which went into pneumonia so I was hopeful that after I finished the antibiotics, I’d feel better. Unfortunately that was not the case. 

Today was my oncology follow up after my scans last week so I started tracking my blood oxygen levels and sent them a summary of my concerns on Thursday hoping to get attention on the issue as I had raised this as a concern before Covid without success. Turns out, that wasn’t needed as they could see my levels were low during my routine vitals. They ended up walking me down the hall to confirm I was dropping into the mid-80s just walking around. So what does all that mean?

Let me introduce Hank, the oxygen machine that I am now hooked up to as I navigate my home. See all that tubing? It follows me wherever I go and there is enough to get everywhere. So no hide and seek for me…just follow the green line. Ugh!! I also have a travel version, Henrietta, that I’m just as excited about.

The main reason for my oncology visit today was to review the results of my scans. While the treatment did impact my bones positively, there is disease progression in the soft tissue which means my first line of treatment has failed overall. More wonderful news.

What all this means is that I’m now transitioning to IV chemo. I’ll have a port placed on Thursday and have my first infusion on Tuesday. New treatment means new hope, right? And it had better work so I can kick Hank and Henrietta out of my life.  A friend sent me this quote today that resonates…

Sails are adjusting and we’re trudging forward.

I am grateful to Uncle Tom for taking me to my appointment today. Dan is in Colorado with Tyler, which is exactly where I want him to be, and I didn’t want to be alone. He got to experience the whirlwind that is Roswell…phlebotomy, vitals, PA, onc, respiratory therapist, pharmacist and someone who referred to herself as the junk drawer. Her actual title is ‘Oncology Nurse Coordinator’ and she does all sorts of random things…hence, the junk drawer. So, thank you Uncle Tom for getting me through a very hard day.

Onward.

Boring Update

There isn’t much of an update, but it has been a while so I figured I should post something. 

I was on a Mississippi Riverboat cruise with mom, Aunt Toni and Aunt Phyllis as well as the rest of the Broadalbin seniors for 8 days. I arrived home exhausted and with a head cold Monday evening after 12 hours of travel convinced my bloodwork was going to be in the tank on Tuesday. Unfortunately I also tested positive for Covid Tuesday morning so then I was worried I wouldn’t be allowed to get my bloodwork done. But, they have Covid protocols and I was allowed in the hospital. Shockingly, my bloodwork came back good so I stayed on the 600mg medication. Good news!

My brain MRI was delayed a month which is disappointing, but that’s just to make sure the skull rads did the job. I think my bald head is evidence that it worked.

Oh, my bloodwork also showed that my tumor markers are on a steady decline. Excellent news.

That’s about all that is going on. I’ll take it!!

My next update probably won’t be until mid-April. My first scans since treatment began are on 4/10 and I’ll be meeting with the oncologist on 4/18 to review the results. I’ve already been warned that the first scans won’t tell the whole story and could actually show my bones ‘lighting up’ which is typically bad, but normal on this medication as it attacks the cancer.

This certainly is a mental game as much as a physical one. So far I’m still out there living and loving life so I’m winning.

Good News

My bloodwork came back good today so I can take my medicine again!! I shouldn’t be as excited as I am. I was also told my liver enzymes continue to come down. Woot woot!

And, I don’t have another medical appointment until March 21st. 3 whole weeks!! I am stunned. We haven’t gone 1 week without an appointment of some sort since this all started.

The bad news is that I can’t remember where I put the decor that should go on the entertainment center so it is about to be March with Christmas decorations still on display. Oh well?? At least I’ve stopped turning them on.

Ups and Downs

This was a tough week inside my own head after my follow up with my medical oncologist on Tuesday. So, I’m forcing myself to focus on the good stuff:

• Overall, I’m feeling good and functioning.
• Radiation on my hip finished yesterday and I’m not experiencing side effects.
• My tumor markers went down significantly and this is a very good sign although we won’t have confirmation that I’m responding to treatment until after the first couple of scans which means 6 months (ugh).
• I am in more pain than I was a couple of weeks ago and that could be the bones starting to heal. She used a word that starts with R that I can’t remember. I was worried it meant treatment wasn’t working. She explained that bones tend to light up on scans with this medicine because of good activity. 

Here’s the stuff I’m not happy about:

• My white blood cell counts are down so I’m taking a break from what I consider my main treatment, kisqali/ribociclib. I’ll go back Tuesday for more bloodwork and can hopefully start again.
• I’m on 600mg so if this happens again after my next round, she’s going to lower me to 400mg which I’m told is just as effective. But, how can it be? My doctor and my case nurse from my insurance group both assure me it is.

This week we also had a tough conversation about pain medicine as I’ve been resistant to taking it mainly because I’m not in that much pain. Why put more in my body than necessary? She thought I was concerned about addiction, but my other concern is my cognitive function. I want to stay sharp. After being assured I’d be ok, this week I’m taking ibuprofen in the morning, again in the afternoon and Tramadol at night. And I feel good. Almost too good? How will I know if there is pain I need to be worried about? See the things I find to worry about?

The support from family and friends has been wonderful. I appreciate the messages with thoughts & prayers, the cards, and more. I smile thinking about our support system and appreciate each and every one of you.

We had quite the ice storm in Buffalo this week. Dan’s been outside chipping away at the ice in the driveway and taking Lucy out to make sure I don’t fall. There isn’t a better guy out there. He’s also doing his best to address my worries and move us on to something else. God was looking out for me when he put Dan on my path.

Hair

I’ve hemmed and hawed about getting a wig this time around. I had 2 last time, but they were really uncomfortable so I didn’t wear them. But, seeing the huge bald spot on the top of my head was depressing. And it made me feel like everyone could tell there was something wrong with me. It made me feel sick even though I actually feel fairly normal. So, with a push from a friend, I educated myself of wig caps and ordered one. 

Unfortunately, it looked nothing like the picture when it came in. The boys laughed and Ryan said it looks old fashioned. Sigh. I couldn’t disagree.

It was so much hair and looked like a round basketball on my head. It definitely aged me.

This is how it was supposed to look. I wasn’t expecting it to look this good on me, but it was reviewed really well so I did hope it would be wearable.

The good news it that it is comfortable and not itchy so I thought it might be worth a little more effort.  I left the house today to find wig-friendly product hoping I’d be able to smoosh it down and make it less fluffy. The first place I went was closed. But, I found a salon that I had no idea existed just down the road with a stylist who specializes in cutting wigs and she said she’d help me today…on a Sunday!  

She took a really long time thinning the wig, showing me how to style it and answered all my wiggy questions. I think it looks much better. The pics of the wig this morning made it look better, but I don’t think this pic does it justice. It really is SO much better.

Maybe I’ll wear pants tomorrow with a button and consider putting make-up on. Maybe.

Tattoos

Next week my hip will be getting 5 rounds of radiation to reduce the risk of fracture and a side benefit is pain reduction although the hip hasn’t been bothering me much. My hip has the most ‘extensive’ disease and they are worried about it because it is a major joint. I’m beginning to hate the word ‘extensive.’ In preparation for radiation, I was at Roswell yesterday for mapping which means getting tattoos so that they can aim the radiation in the same place each time. I can now claim 7 tattoos, if I count those from my first round of radiation 12 years ago. Nobody needs to know they are only dots and that I found it very painful.

Another major milestone was completing my first cycle of kisqali/ribociclib on Monday. I take this medication (3 pills) for 21 days and then get a 7 day break. Check out the box:

It keeps me on track, but I am feeling a little lost this week without it. I am still taking the other pill, but I go to bed feeling like I’m forgetting something.

I have so many prescriptions in my cabinet. Luckily I haven’t needed a lot of it…anti-nausea, anti-diarrhea, 2 different pain meds, antacid…so much stuff!! And, they’ve offered me even more that I declined…anxiety, marijuana…so surreal. I’m taking as little as possible.

So far, I’m still not experiencing major side effects. My stomach is a little wonky, but I’m trying different things to see if I can make that better.

I am appreciative of those reaching out, offering support, sending cards, etc. I think the prayers and positive vibes are helping!!