Tag Archives: my life

NURSE LAURA, TREATMENT BEGINS

17 Monday Jun 2024

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NURSE LAURA: TREATMENT BEGINS

June 17, 2024

Today was my appointment with nurse Laura, a nurse practitioner in Dr. Z’s office. Per their request, I bought all the meds in, cancer and nausea and vomiting meds. Upon first entering, my blood pressure was a little high. I reminded them that last week’s was normal, and that I’m usually normal, but kinda anxious and agitated about cancer. They took the pressure again at the end of the appointment, and it was back in normal ranges. I need to dig out my talking blood pressure machine, because high blood pressure is a potential side effect of the meds, so I need to keep an eye on it.

Laura went over things in great detail. I was happy she gave me such parameters, so I can tell if something is beyond what could be considered normal. She said things such as:

“If you’re tired and take a nap and feel better, that’s fine. But if you are so exhausted you feel you can’t get out of bed, call us immediately.”

She talked a lot about mouth sores, warning me not to use any mouth wash that has alcohol, which many name brands do. She actually recommended mixing a teaspoon of baking soda in a cup of water and drinking that to help the mouth sores and to keep my mouth hydrated.

She also talked about the hand and foot side effect, something that can cause pain and redness in both. Apparently, it can become quite serious, so she recommends moisturizing the hell out of both hands and feet at least twice a day.

She talked and gave recs for vomiting, diarrhea or constipation, but I’ll spare you all the details on that. I have meds for nausea and vomiting, and she recommended what to take for the other two.

It’s important to know that these pills are basically chemotherapy pills. They are formulated differently from typical chemo IV meds, and this does work on kidney cancer. However, it does attack fast growing cells, and it can and does attack good cells along with bad cells. So, as with traditional chemo, I have to be careful about infection. She recommended masking up when I go out and frequent hand washing while at home. Also, due to the ingredients in the meds, she said to flush the toilet twice after I relieve myself and to use a bleach/disinfectant wipe on the seat and lid.

I tend to have stomach pain not quite frequently, but often enough, due to what I eat or drink, and I did mention this to Laura. She just said that I know my body, my baseline of how I generally feel, and if anything feels worse, or just not right, call them.

The oncology office had a direct line during normal office hours, so if I am concerned about something happening with these meds, a side effect that worries me, not feeling well, whatever associated with taking these chemo meds, I don’t have to go through the main call center, but I can reach Dr. Z’s office right away. This was a huge comfort. I mean, if you’re feeling ill, it’s no fun to wait on hold for a long time, or wait for call backs. Of course, if it’s after normal office hours, I still get the call center.

I had to have labs before starting the meds. Everything was within normal ranges except one kidney function test. However, considering I have only one kidney, that’s probably to be expected. If I don’t hear from anyone in the office today, I will start the meds tomorrow morning.

I will have a video appointment with nurse Laura a week from tomorrow, and then I have an in-person appointment with Dr. Z two weeks from tomorrow. It was a huge relief to know they are monitoring and following up so much, particularly during this first month. I will have to have labs again when the first month is over, and eventually CT scans and continued labs and follow up.

I meant to ask Laura about mental health support. I’ve been feeling fine, emotionally, since my venting last week. However, I expect there will be ups and downs ahead, particularly if the meds leave me feeling ill. It might be good to find online peer support or something. I’ll just have to see.

So, that’s the scoop. I start my chemo pills tomorrow. For better or for worse, Here I go.!

Venting

12 Wednesday Jun 2024

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VENTING” FEARS AND DEPRESSION

June 12, 2024

I’ve only been able to eat a bowl of cereal in two days. I wake up crying in the night and can’t go back to sleep. I actually had the nerve to ask God “why are you doing this to me? Hasn’t lifelong juvenile arthritis with all that entails been enough?” I quickly apologized for that impertinence! But the point, the thought the terror remains. Why did this have to happen to me?

I know I seemed positive after my appointment on Monday, but I do tend to blow off the negative feelings in public. I also didn’t have the rest of the story. Yesterday, I got a terse note from someone at Dr. Z’s office, explaining next steps. One of the reasons I have to wait to get the meds is that they come through a mail order pharmacy. Once I hear from them, I am to call for an appointment with the “education nurse” at the oncologist office. In the meantime, Dr. Z prescribed two meds for me, and I am to bring those to the education appointment with me.

I went on to check out what notes Dr. z wrote about me in his after visit area of my appointment info online. He did say some very nice things about me, warm, positive, friendly, all very nice, and how I generally try to behave. But then I read these words when describing my cancer. “incurable, but treatable.” Incurable but treatable. This has set me on a tizzy of fear, anxiety, and nighttime insomnia and tears. He’d implied during the appointment that I’d be taking the cancer meds forever, but I guess I hadn’t really let that become reality. Truly, forever? Doesn’t this stuff go in to remission, ever? Do I have to take potentially deadly and expensive meds for the rest of my life? Having looked up info about cabometyx, and the fact that even before I’ve had one pill or even a breath of side effects, my oncologist is prescribing nausea and vomiting meds to combat those side effects, yell yeah, I’m in a tizzy. In a panic, frantic and seeing my future as a dim unhealthy life.

People will probably comment that I’m making too much of this or having ridiculous emotional reactions, but if you’ve never stood by in helpless agony, watching someone you love die bit by bit from cancer and the treatment for that cancer, you can’t understand the stark terror I feel right now. I don’t want that to be my life! I don’t want those who love me to have to stand by in helpless agony and watch me go through it, wishing with everything they have that they could just do *something* to ease things or make them go away. Until a person wears either variety of these shoes, having it, or loving someone who has it, you just can’t understand. That’s a good thing overall, because I would never wish that on another human being, ever.

I don’t know what to do about all these feelings, except to write them out, expel that tangled knots inside me through my words, words that in one way or another have been my way of dealing with the worst things. I have never been able to write about Dad’s cancer and ultimate death, but hopefully, I can write about mine. Yeah, Father’s day is coming up, and that may not help my frame of mind right now, but I think I’d feel all these things without that piled on top.

I’m afraid for my future, and I’ve never really felt that before. I’ve been hurt, broken-hearted, mourned losses to death and losses of romance or friends, but even with my juvenile arthritis, I’ve never felt lost and helpless about my physical well-being. My folks and my doctors taught me how to handle my arthritis from childhood, and my life’s goal has been that it will not beat me, that I will, as I say with gallows humor, will walk into my grave, on my own two feet. I can’t find that attitude about cancer, incurable but treatable cancer, not yet. I just find my brain, my feelings, whirling round and round in a never-ending circle of fear and worry. I wish my doctor had a better bedside manner and would have taken time to reassure me. I wish I wasn’t playing the waiting game again, just waiting to hear from some unknown pharmacy, and then be educated. I wish; I wish; I wish … so many, too many things.

I’m scared.

Status report, at my wits end!

10 Sunday May 2015

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Status update. This is embarrassing, and I blush as I type, but here goes. Some people have asked about the status of the fundraiser and my finances. I’m so grateful to all those who have given so far. You don’t know what it means. But I’m a long way from out of the woods quite yet. I still have several major bills to pay off, totaling around 3000 dollars, plus trying to put some aside in savings in case of emergencies with Petunia, my condo or me. I’ve been sick this week, but with no medical insurance and no savings, I can’t go to a doctor. Fortunately, I’m better now, that’s just an example of the way I’m living on the edge. I worry about something major going wrong with the condo, or even something minor, and not having the funds for it. I just worry all the time, not sleeping well, stomach constantly in knots. Yeah, I’m a worrier. If I could pay off the other bills, I’d be able to breathe a little easier.

And even more craziness happened. I have two bank accounts. One of them was only used for the deposits from SSA, the disability money. Before I knew it had been stopped, I had my comcast bill automatically debited from that account. As soon As I realized what had happened, I changed it, but the first time I changed it, comcast didn’t make the change in their records. Thankfully, that is changed now. However, that account was overdrawn 100 something dollars. Someone sent me a check and I used the iPhone app for this particular bank to deposit that check in that account, to cover the overdraft and to have it there for an emergency. We got confirmation from the app that the deposit went through. So, this weekend, I went to the app, and then to the web site to check the balance in that account, and both places said I had no accounts. I just about fainted. I have three linked accounts there and have had them for years. I never got a call or email about it, and if they sent print mail, well, you know, I can’t read that. So, I looked around on the web site, and there was a message from them saying the deposit hadn’t worked. But still there was no info about my accounts being closed. And why would they close them, when I’ve had them for years and never had anything like this happen before? Of course, it was Saturday evening, so I couldn’t do anything about it. Going after work tomorrow to try to get it all straightened out and get the accounts restored. Praying they don’t’ charge me some ridiculous amount to do this or it will just eat up what I was trying to deposit! I really feel like I can barely take any more of this. I’m at my wits end!

So, if you can give, thank you. If not, if you can share the link, thank you, and share it again if you remember it. If you can only send prayers, good thoughts and positive vibes, thank you. I truly mean it and thank you with all my heart. Here’s the link again.

http://www.ContinueToGive.com/SupportSherryGomes

The Theatre, The Theatre!

28 Saturday Feb 2015

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Today, I went with my friend Joylene to see Fiddler on the Roof at the Boulder Dinner Theater. We had a great time.

I was a little worried that I might not be able to get out of my yard, because we’ve had some snow melt, and then the temps have gone to zero and below, and right outside my front door gets quite icy. But Dan drove so Joylene didn’t have to–he works in the area anyway–and he helped me walk over the icy parts.

We got to the theater at around noon, got ushered to our seats. Yes, at this theater, they actually personally usher you to your seats, instead of just telling you where they are. It is a dinner theater, so we sat at tables. The table was raised up on a platform, and I wasn’t sure I’d be able to step up there, but holding onto the table and the chair and Joylene helping me balance, we made it. The tables were elegantly dressed, with linen table cloths and napkins, water glasses and coffee mugs, bread and butter and silverware. The cast members actually wait on and serve the audience.

Joylene and I both ordered a mimosa. My meal was chicken cordon bleu with potatoes and veggies. Joylene ordered a veggie coconut curry. We ordered dessert too, but it isn’t served till intermission.

The show started at around 1:30, and I was spellbound. I’ve watched the movie so many times, and I saw the play once when I was a teenager. At first, I wasn’t sure that the actor playing Tevya was going to be good. He really doesn’t sing well. But oh my, that man acted the part so wonderfully. He had the mannerisms, the emotion, the up and down of that character. And since Tevya is the show, he made it fantastic. All the other actors and singers were great. And when the entire company was on stage for the crowd scenes, oh, I just can’t express how fabulous. I’m running out of superlatives! It’s not a huge theater, so no place is really far from the stage. I could hear every note, all the beautiful harmonies in the music. When they sang the song about their home town, they brought tears to my eyes. There just aren’t enough words to say how good it was.

At intermission, we had our dessert. Joylene had something called orange blossom cake. It had a butter cream frosting without real butter, and she said you couldn’t tell the difference. For Joylene, that’s a big thing, because like me, she likes butter and lots of it. I had a caramel turtle cheese cake. It was quite good, and not as overpoweringly sweet as I expected.

The only problem I had all day was Petunia. Tuney just would not lie down and stay down. She wasn’t doing anything wrong, not begging for food or bothering other people, nothing like that. But I’m used to dogs just lying down under the table and going to sleep. She was up and down and up and down for the whole almost five hours. Ugh. Ah well, she’s young still. Joylene said that during the crowd scenes, the scenes with the whole cast on stage, Tuney would stand and watch them. Silly girl.

Anyway, it was a wonderful day out, and I’m so glad we went. I hope to go again, but next time it will be my treat for Joylene, as this was hers for me. I had almost forgotten how very much I love live theater!

News! News!

04 Friday Apr 2014

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I’ve been quiet here, because there wasn’t much to report. Once I had the medical papers submitted to the schools, all I could do is sit back and wait. man, do I ever hate that! I’m the type who feels better when I’m doing *something* to make my goal happen. Sitting back and trying to wait patiently on the decision of others is dreadful. I’d never have worried about it in the past, but after all the changes GDB made last year, I had some serious doubt about whether or not they’d accept me, and of course, with GEB, it’s new to me, so I have no context on which to ponder yes or no.

 

But yesterday afternoon, my cell phone rang with a 415 area code I know well. it was Thursday; it was Admission Review committee meeting day, and GDB was calling. Thankful I was not on a work call at the moment I answered, sounding cool and relaxed, not a hint of the hope and fear in my gut.

 

It was admission, calling to tell me I’ve been accepted for retraining!!!!! AAAAAAAAAAARRRRRRGGGGHHHHHHHHHHHHHRRRRRRRRRGGGGGGGGGGGHHHHHHHAAAAAAARRRRRRRR4GGGGGGGHHHHHHHH!!!!!! lol, doesn’t quite work as a joyful scream, but it’s an approximation of how I felt! Happy happy happy!

 

Yes, after thirty-nine years, the idea that GDB might not accept me was like being rejected by family. I would have gone on and been fine with another school, but it would have hurt, a hell of a lot.

 

Of course, due to my physical situation, I am on the waiting list for the right dog and for in-home training. I need a dog that walks at a fairly slow pace, has good focus at that pace, doesn’t need a lot of correcting and hard handling. I also want a dog with a sweet loving personality with a bit of the goof hidden inside.

 

In Home training means that instead of going to the school and staying in the dorm for a couple weeks, training there with the dog, an instructor will come here to Colorado, bring the dog to me, and we’ll train in my home area. This is much easier on me physically, and it also means I might be able to work a little in the hours after training–if I’m not too exhausted. we’ll still cover all the things we need to, but by the time the instructor leaves, Newie–that’s short for NewDog–and I will be familiar with this area and will have a solid start to our relationship.

 

So, wow, yeah, I’m excited! I’ve had in-home training with my past two dogs, and both times, I’ve only had to wait a couple months for them to find the right dog, so I’m hopeful we could be training by summer and well bonded and established before the winter sets in and cuts back the time we can be out walking around.

 

As for the other school, no answer from them as yet, and of course, now I need to let them know I’ve been accepted by GDB.

 

Okay, everybody, can you all start hoping, praying, wishing vibe sending and all that good stuff for find the dog quickly and that maybe, just maybe, possibly, fearful of being too hopeful, but perhaps it could maybe be a, a, a, a, *whispers, afraid to say it aloud* a golden retriever. Whew.

 

And now, I need to start working on finding a new home for Olga. I’d keep her of course if not for Bianca. But I think three dogs is too much to handle. and Bianca is old, thirteen now, and I don’t feel she should be the one to be moved.

 

Share in my joy!