LONG DAY OF PORTS

March 7, 2025

Yesterday was port Day. It was a long day, exhausting, painful, and not necessarily a simple process. I’m going to try to keep this short, because I am in a lot of pain.

My appointment was at eleven, but they wanted me to check in ten minutes before that. Rosie drove me, and we got there in plenty of time. Showed my ID and medical insurance, signed my life away, and a nurse came to show us to our hang out and wait area.

I think there were about six nurses getting me set up. First I had to change into a gown. Then a male nurse covered me in warm blankets. Yum! so nice. In a flash, I was hooked up to a heart monitor, a blood pressure machine, an oxygen monitor, blood was drawn, and IV pieces inserted and taped down. Every one of those six nurse asked me the same three questions, multiple times.

“what is your first and last name? What is your birth date? Why are you ?”

Rosie and I joked about me replying and adding, “what is your birth date and why are you here?” lol.

After that busy 20 minutes, it was time to hurry up and wait. And wait, and wait, and wait. Fortunately, Rosie and I never run out of things to talk about. However, why on earth do they ask the patient to be there at a certain times, when the procedure won’t even begin for at least two hours, maybe more? I just wanted it to get done. Waiting just gave me time to get nervous. And I was starving and thirsty. The nurse who called me the day before told me nothing to eat or drink after midnight, and here it was about 12 hours, then 13 hours since then, even more since I’d actually eaten, and nothing was happening but me getting hungrier!

A little funny bit here. My heart monitor told us that my heart had skipped a beat. Well, that’s such a common theme in love songs or romance novels, and she and I began making up silly lyrics about hearts skipping beats. One example from me was

“My heart skipped a beat,

When the blood pressure machine began to squeeze.”

As an aside, I hate electronic blood pressure machines. They hurt my arms so much! Rosie says I should use the phrase about my heart skipping a beat, somewhere in the YA fantasy I’m writing. It’s turning out to have a lot of humor in it, so I think I will add that line somewhere.

At last, around 1PM, one of the procedure nurses, Priscilla, came in to talk to me and explain what was going to happen. The doctor was finishing a procedure, so it was still half an hour before they came to wheel my bed to the procedure room. One cool thing is that from the time you get into your assigned bed at the start of check in, that’s where you stay. They wheeled me to the procedure room, turned me on my side, put a board under me and whisked me to the procedure table. My bed waiting patiently for my return.

There were about five or six people, including the doctor, in the room. Priscilla would be responsible for giving me the drugs, under the doctor’s supervision. First she asked what kind of music I’d like. I asked for oldies, and they found an oldies channel on Pandora. That made me smile a lot. I noticed that the staff called the doctor by his first name, Robert, so I will refer to him that way. It tickles me, because I think of the Beatles son DOCTOR ROBERT. Doc Robert and his procedure assistant Gordon, checked out my chest area—now now, not that!—to see where would be the best place to insert the port. They described the process, telling me they would be stabbing me with needles that would sting and burn, to give me lidocaine and epi. They also checked out my neck, I guess for the blood vessel. The lidocaine didn’t burn at all. I’m tougher than that. But the guys touching my neck, squeezing it a little, nearly had me flying off the table. I’ve always reacted badly to that kind of thing, can’t even have blouses that button up against my neck.

Priscilla added the drugs to my IV at some point, because I began to relax. I asked her what she was giving me, fentanyl and something that sounds like “ver said”. I asked my Alexa how to spell those, but she didn’t answer me for the “ver said”. Lol. They had told me I’d probably stay awake, but I don’t remember anything much more, until they told me were were done, and they were moving back to my peacefully waiting bed.

Once back in my original spot, Rosie rejoined me, and we had to wait half an hour or so. The hospital had to make sure I was recovering okay, before they could let me go. There were some instructions about handling the dressing, when to change it, when it can come off, when I can shower, but I don’t remember a thing beyond the first dressing change should be after 48 hours. We have paperwork, and when Rosie comes tomorrow to help me with the dressing change, I’ll have her read it all to me. The dressing is miserable. there’s a big pad of stuff taped over the port area, and there is at least tape one a good part of the front of my neck. Due to limited range of motion, I can’t actually touch my neck, but moving my head, pulls on the tape on my neck. The port installation area hurts a lot, and the neck hurts, and it all also itches.

Well, by the time we left, I was so incredibly hungry, and we stopped at McDonald’s. We ordered a cheese burger for me, only catsup and mayo please, a double cheese burger for Rosie, one bag of fries, and a milk shake for me. However, when we got our bag of food, we also had an extra bag of fries, a box of four chicken nuggets. My burger only had catsup, and it also had onions and pickles. I ate my whole burger, two nuggets, a few fries and my entire milk shake! Would you say I was hungry? I was!

When we got home, I gave Doug a brief update, hugged Shani who had stayed home with Doug and his dog, and went to bed, where I stayed until five this morning.

I’m in quite a bit of pain, depending how I move my body or my shoulders, or my head. I’ve rested a lot today and will probably go back to bed in a bit after some food. Seems like I’m still hungry! I wish this dressing and tape could come off NOW! I was going to say, I don’t mean to whine, but damn it, I do mean to whine. There a pocket in my chest with a foreign object that is somehow connected to something in my neck, and will be sued to deliver what amounts to poison to my heart and then to the rest of my body. Yes, I’m whining. The port process and recovery was a lot more than I had expected. But tomorrow will come and likely I’ll feel better. Maybe.

This turned out a lot longer than I meant it to be! Sorry folks. Thanks for reading and for all the support.

WARP SPEED

March 3, 2025

Well, when things happen they happen fast, or at least in this case they are. I saw Dr. Z just on this past Monday. On Wednesday the hospital called me to schedule my port installation. The next day, Dr. Z’s office called to schedule my teaching appointment. And yesterday, the infusion center called to schedule my first treatment of the immunotherapy. A few hours later, someone from the hospital called again to pre-register me for the port and the infusion.

So, this Thursday, March 6, I’ll be going to the hospital to get the port. This means a long 4 to 6 hour day there. The prcedure takes approximately an hour, but of course there will be the early part where I go in and get set up on various monitors, and then most likely a lot of hurry up and wait. The procedure means twilight sedation, so I expect they’ll keep me a while afterward to monitor how I am doing. I’ve been doing some research on getting a port, and it looks like it will be placed either on my chest or my arm. It’s under the skin, so once the spot heals, it’s not like it sticks out or gets in the way. They have to place it where they can access a large vein, so the meds get into the blood stream easily.

The teaching appointment with Nurse Laura at Dr. Z’s office will be on the Monday following the port placement. That’s March 10. I’m thinking of bringing one of my devices to record the appointment. There are so many potential side effects, and a number of things I’m supposed to call the office if they occur.

The first infusion is on March 13. This first one will take approximately two hours. They said after that it will be about 90 minutes. They told me I’ll be enthroned on a comfortable recliner. I can have one person with me, and I can bring devices, books, whatever I need to pass the time. I practically had a panic attack after the call to schedule this appointment. I had the beginning of symptoms. I felt my heartbeat speed up a bit. I felt myself starting to pant. I was alternating between cold and warm. In an attempt to run away and revert to childhood, I guess, I went to my bedroom, got in bed, pulling the covers up to my chin. The dogs joined me there, and I got my book player. Curled up with my back against my dog Shani, I stayed there for about three hours and read, calming myself down and trying to forget.

That’s about it for this time. I’ll update as I can. I’ll update after the port insertion for sure, though that will likely be the next day or so. Warp factor 10, Mr. Scott!

February 24, 2025

WHAT’S NEXT?

If you’ve ever watched the TV series, the West wing, those words will be familiar, spoken often by president Bartlett. It seems like a good question to ask now, as things are changing again. I actually know what’s next, and I’m frightened, freaking petrified, as a matter of fact. But let’s go back a ways.

A few weeks ago, I had a CT scan. The results really were mixed, some nodules had grown a little; some had stayed the same. There were new cysts in my liver. Things just weren’t clear. I had just started the new meds, Everolimus, and it was too soon to know if they were working. Dr. Z decided to have me get another scan in three weeks and then come right back in to see him. The results wouldn’t be in with all the measurements, but he could see the pictures, so that was the plan.

The Everolimus was mostly easier on my body. I didn’t have all the annoying side effects as on the previous drugs, other than fatigue. And in the middle of last week I developed terrible mouth sores. Things were so painful that I could hardly eat a thing. Everything I put in my mouth, other than milk, ensure, things like that, just burned. The fatigue was pretty strong, and I needed naps nearly every day. Sometimes those naps messed up my night sleeping schedule, but sometimes the naps didn’t mess it up. It was better than the Cabometyx though.

I had the CT scan on Friday, and I saw Dr. Z today. The news was not good. He’d warned me that the new meds were not as effective against cancer as the original, but I had still hoped. Well, I’d been on the meds seven weeks, and apparently, they passed by not as effective and were just plain not effective. My lung nodules have definitely grown. So, what is it now? Plan D? And that plan is immunotherapy. This is what I have feared all along.

In case anyone has forgotten this, I was born with an auto immune disease called juvenile rheumatoid arthritis, JRA. I had the worst kind you can get, because it affected every joint in my body, and it was systemic, meaning it could attack internal organs like kidneys, lungs, heart, and liver. It could also cause deafness and blindness. I got the blindness, and a lifetime of chronic pain and reduced range of motion, lost of dexterity and mobility and so forth. My immune system has attacked my body since I was born. Immunotherapy puts the immune system into overdrive, or hyper drive for any Star Wars fans. My immune system will be attacking the cancer, but it will also be attacking a lot of other things potentially, and maybe making my JRA become a problem like I haven’t known before.

The list of potential side effects of immunotherapy is one of the scariest things I have ever heard. Rosie read me the list today, and I’m sick with dread. Of course turning my arthritis up to high is one. colitis, nausea, headaches, weakness, possible trouble breathing, possible lung and heart infections, loss of appetite, and on and on it goes. Dr. Z said about 50 percent of his patients develop thyroid problems, though that can be treated with medicine.

So, what’s the plan now? They are going to be working with my insurance, medicare, so I’m hoping that will be paid. I will have another teaching appointment with Nurse Laura. Then I have to have a port put in my body. The immunotherapy is an infusion drug. No more little pills. The documents I got today even talk about negative reactions to the infusions and repeatedly say in I have this or that reaction call 911 immediately.

I’m scared, okay? I’m petrified, terrified. What if the arthritis gets really bad? I’ve fought my entire life to beat it, never to let it control me, always to be mobile, walking. Yes, I’ve lost motion and dexterity over my 67 years. I cried in 2009 when I could no longer put earrings in my ears. I can hardly reach the back of my head when washing my hair. When I get blood drawn, they can’t get it out of my elbows, because my arms don’t straighten enough anymore. If immunotherapy jacks up the JRA, what will happen to me?

That doesn’t even count all the other possible side effects, all of which I fear. The list is worse than with the more traditional chemo pills. So many terrible things can happen. Before anyone says let’s be positive, remember, I’ve had side effects, some damn serious ones, from both the other meds I’ve taken for this. Why should I expect to get off easy with this treatment?

In the doctor office today, tears came in to my eyes when he said definitely immunotherapy. He assures me it does wonders for cancer, but for today, my thoughts are all wrapped up in, at what cost. There isn’t really any other option for me at this point. It’s immunotherapy or stop treatment altogether.

After watching my dad die of cancer, and seeing what chemo did to him, I swore repeatedly that if I got cancer, I would not do treatment. It’s a whole different matter when you actually get diagnosed with cancer. Of course I’m going to go through treatment. What else? Sit back and wait to die? That’s not an option at all. But for today, and for however long I need it, I will let myself be worried and frightened of the next steps in this process. I don’t apologize for my fears. This is happening to me, after all.

SCAN RESULTS AND NEW MED REACTIONS

January 14, 2025

When I posted last time, I had not received my CT scan results. They arrived within minutes of me posting that update! I decided to wait to update again, until I’d been on the new drugs for a while and could talk about them. I’m three days into the second week on Everolimus.

First the CT scan. It was concerning actually. I don’t understand all of it, but the summary described the results as “significant findings”. The nodules in my lungs have either stayed the same or had slight increases. This could be because I’d been off any cancer meds for a few weeks at that time. There was also something about thrombosis, something somewhere else that could be indications of metastatic cancer. It left me anxious and frightened, particularly because I don’t know what all these medical terms mean. I’m guessing Dr. Z doesn’t find them to be too awful, because he hasn’t called to discuss them or moved up my next appointment. I see him again on the 27^th of this month. I guess I’ll just have to be content to wait until I meet with him to get my explanations. How I wish reports on the patient’s chart, easily accessible to the patient, could be written in terms the average person can understand.

I think I’m pretty savvy about medical stuff. I’ve had an auto immune disease all my life and doctors have always been open with me about that disease. I suppose where I’m savvy is in regard to juvenile rheumatoid arthritis, and not about cancer. Having experienced my dad’s battle with a different kind of cancer apparently didn’t educate me enough to understand my own results, though the fact that Dad died of his cancer definitely affects my thought process quite frequently. So, I won’t understand this report until I meet with the oncologist. I considered posting the results here, thinking someone might know more than I do, but I decided against it. It feels too private to put out on facebook or my blog.

A week and a half into the new meds, and things are relatively okay. Yes, there are side effects, but it’s not like the Cabometyx. I believe I started feeling miserable around this time with those. My major side effects so far as fatigue and diarrhea. Of course, diarrhea again! I can’t seem to escape it. I wonder if I’ll ever experience normal bodily functions again! I don’t have any mouth sores yet. I’m trying to be very good about using the prescription mouth rinse and using the rinse Denise sends me in between. I admit to missing a few mouth treatments, here and there, mostly interrupted because of taking naps. But so far, so good. Fingers crossed everyone.

Dr. Z’s office referred me to a nutritionist, and I’ve been in touch with her through My chart messaging and email. She helped a great deal. She advises me to eat frequent small meals or snacks, to stick to a low fiber diet to try to keep diarrhea to a minimum, high protein and high calorie meals. She also recommended some protein shakes, and a couple different electrolyte boosters, instead of using Gator aid. I ordered some of the protein shakes from amazon and some Pedialyte. I haven’t used either yet, but I will. I need to find room in the fridge! I wish I had a small fridge to keep in my room or something, just to hold things like these and my other hydration options. I have enjoyed working with the nutritionist quite a bit and feel better, more in control of my diet and ways to help my body go through this treatment.

Yesterday I had a video meeting with Laura, Dr. Z’s nurse, just to check in and discuss how I’m doing on these meds. She seemed pleased with my progress and reminded me that if anything gets worse, I should get in touch right away. She even told me to get in touch with her specifically, not just the triage line. Again, I felt so protected and cared for by this meeting. If all cancer patients get this kind of support from their doctors’ offices, they are lucky. I knew someone once who got pretty disgusted with me over my feelings of gratitude when people helped or supported me. But I’m not ashamed of the thankfulness I feel for Dr. Z and his office. They must deal with many patients every week, but I feel that they are as invested in my health, my cancer, my treatment and my hopeful recovery, as they might be with anyone else’s.

I guess that’s it for today. I’m going to try to do an online exercise class this morning through an organization called Couch to Active, a program specifically for people with disabilities. I’m still losing weight, but I’d like my body to get stronger. The class this morning is called mobility and stability. Yay. Unless anything drastic changes, I’ll be in touch again after my appointment with Dr. Z. Feel free to get in touch with me via email, if you like, at sherry.gomes@outlook.com and I’ll catch you all on the flip side.

NEW MEDS, NEW YEAR

January 6, 2025

Happy New Year to all. Here’s hoping 2025 will be a better year, something I say every new year actually. Last year was difficult, and I expect there will be difficulties in this new year, but I’m ready to face it.

On the 30^th of last month, I went to the teaching appointment with Dr. Z’s nurse Laura, to learn about the ins, outs, and side effects of the new drugs. This meeting was much shorter than my first teaching appointment back in June, because I’m much more familiar now with all the cancer treatment processes. My sister and I agree that Laura must have used the phrase “mouth sores” at least twenty times in that meeting, leading us to believe that mouth sores are the most likely and concerning side effect. All the usual chemo side effects are possibilities as well. oh, such fun! She did not mention Hand and Foot syndrome however, so I’m hopeful that I won’t be experiencing those anytime soon. Laura told me I would have to use a steroid mouth rinse four times a day for two months, a process I now call “swish and spit” for you Harry Potter fans! I also need to avoid all the same kinds of food and drink I avoided last time, no citrus, no tomato or tomato products, nothing spicy, and so forth. Last time she said I could drink alcohol now and then, but this time, absolutely NOTHING with alcohol. Hydrate, Hydrate, hydrate! That is the name of the game.

For any who might be curious, the new med’s generic name is Everolimus. The actual brand name is different but I don’t know how to spell that. I started the meds yesterday, and so far, no side effects of any kind. Yay. It’s only two days, so I’ll see how I feel after a week.

About hydrating. I’m trying to find variety in my hydration sources. Of course, water, the obvious choice, but I’m one of those people who doesn’t really like drinking a ton of water. I found some juice that does not have added sugar or artificial sweeteners. I have gator aid and can mix that with water. But too much juice or gator aid can cause diarrhea, and as diarrhea is also a potential side effect of the drugs, I want to be careful about what I eat and drink, so as not to add to the potential! A friend told me about something called water enhancers, a liquid you can add to water. I need to check those out. Another friend reminded me that water melon is a great source of, you guessed it, hydration! Sadly, I think soda is out of my life for the foreseeable future, just as it was with the  first meds I’m going to think of ways I can maybe add berries to water or something. I do not want to get mouth sores!

I have not received the results of my most recent CT scan yet. The holidays messed up any possibility of getting those quickly. There were some issues with my blood work but since I don’t know what half the things listed in the blood results mean, and since Dr. Z isn’t worried about those things so far, I’m just not worrying about them either. I know something that has to do with kidney function isn’t normal, but Dr. Z says that is to be expected since I only have one kidney. I know he’s having them check for more things in regard to my blood, and I’m confident that if there is a serious problem, he’ll let me know.

I’d like to find an unbiased source of info about immunotherapy. If this new med doesn’t work out, or if my body can’t tolerate it, immunotherapy is the only option left. I’d like to be able to read about the pros and cons, and particularly for people who start this treatment with an auto immune disease already. I see research in my future.

I guess that’s it for now. I’m typing this while my house cleaners are vacuuming, so I have to wait to spell check since I can’t hear my screen reader, JAWS, right now! lol. Uh oh, it’s time to go swish and spit!

EARTH ANGELS

October 14, 2024

I believe in angels, but I don’t know that I believe they are constantly involved in our human lives. They have other jobs to do. However, I believe that God brings people into our lives to come along side us, to bless us, to become family, to hold us up when we can’t stand on our own. And during this time in my life, there are a number of earth angels who are changing my life, making this terrible time better by their presence in my world.

There are my online friends, the ladies in our ladies email group who pray for me and check in when they don’t hear from me. There are the friends who have asked me to send them these journal updates and who always respond with a word of encouragement and support. There’s Denise who sends me a special mouth rinse which helps keep the mouth sores under control, and so helping me continue to try to eat. There are all of you who read this on facebook or word press and respond with a word of encouragement

Then there are the angels who are here in person. Doug, I wrote a lot about him for the almost five months he put his life on hold to come here and help me. One of my two dearest friends. I couldn’t get through this without his support.

There’s Joylene who is visiting for a week right now. She listens, she feeds me, she does the lotion on my feet, she comforts when I feel frustrated or down about going through this all right now. She is a calm and quiet presence here, someone I don’t have to hide myself from. I know she and her family are always here for me, and when not here, they are all thinking of and praying regularly for me. I am so blessed in my friends. Doug for 25 years, Joylene for almost 35 years!

And there’s Rosie, my beloved sister. Since she moved in, she brings calm and peace to my home. She helps me in every physical way she can, making sure I eat, reminding me to hydrate, doing my lotion. She’s comfort and security. Every day when I wake up knowing she’s still here. I’m so thankful for her, so thankful that she and I have this bond, and there we are close like this. She’s around eight years younger than me, and we didn’t grow up together for the most part. But as adults we found our bond, and time and distance have come between but never dampened that bond. I’d be lost without my sister.

All three of these special people, the internet and email friends help me continue to stand and fight this battle. I’ve spoken about walking this lonesome valley alone, and that is true, as I’m the one with the cancer. But these earth angels come along on the journey, hold my hands, give me a shoulder, when I’m so weary and ill I think I can’t take one more step on this road. Thank you, Lord, for the people you have given me.

As for me, I had my scan last week, but no results yet. Maybe by the end of this week. I’ve had a difficult few weeks, appetite, fatigue, diarrhea day and night for at least two weeks. I’m worn out and could feel defeated if I let myself think too much about it all. Still hanging in though, and each night thinking, maybe tomorrow will be a better day for me. Hope is alive and well here.

UP TO DATE

September 26, 2024

It’s been an incredibly hard month. I did not have the energy, physical, mental, or emotional to write an update. My last was on the fifth of this month. Other than recovering from various joint replacements, these past twenty-one days have been the worst I’ve ever felt in my life. I had no desire to write over and over “I feel so miserable”, so I just haven’t updated. But it’s time. Some of this will be downer, but it’s not all that way.

I thought I was handling the 40 MG of the Cabometyx pretty well for the most part. Sure, I had side effects, loss of appetite, fatigue, diarrhea, but I was managing. Then everything went to hell all at once. My feet started hurting again. My mouth was so bad, and it was impossible to eat much of anything. For at least a week, I lived on liquids, cold liquids only. If I ate regular food, there was no taste, and anything hot burned my whole mouth. I’m so grateful to my friend Doug for all the smoothies!

I could actually have either been completely ill from the meds, or perhaps I had some kind of virus. I had a few days where I felt feverish; my throat hurt; I felt faint and dizzy. This also could have been from lack of food I suppose. I never read that a sore throat would be part of the mouth sores, but it very well could have been. It was just a horrendous time.

I was supposed to have my first CT scan since starting chemo on the eighteenth of this month. When Rosie showed up to take me, I was so ill and knew I couldn’t handle a 45-minute drive to the radiology office. My stomach hurt so badly, almost the worst stomach pain I’ve ever had. I felt so much like I was going to faint, that I laid down in my bed to be safe. I was battling nausea and diarrhea, feeling feverish too, breaking out into a cold sweat, after I lay down.

I had a few days last week, where I had that achy, even the skin hurts, feeling you get with a fever. Woke up sweating and chilled. This is what makes me wonder if I had some kind of a virus in the midst of the typical side effects.

I stopped the meds, concerned about the feet and the mouth. I let Dr. Z know the situation, and he agreed about going off the meds until I saw him again, which was today. I also rescheduled the scan for October 10.

I had quite a meltdown a couple days ago. I was listening to my praise and worship playlist, and that day, every song, even the upbeat ones, brought tears to my eyes. Then a song came on, called I AM THE GOD THAT HEALETH THEE. I just started sobbing and sobbing, saying over and over “I don’t want to be sick anymore. I don’t want to be sick anymore.” I called my friend Joylene and just sobbed on the phone to her, asking her several times to continue to pray for me. I guess I needed her calm and gentle love, because I felt so much better after that call. My mood has been positive since that.

Speaking of Joylene, sometime since I last updated, she and her husband came and spent a few days here. I hadn’t seen her in over a year, and it was such a comfort to be with her. She’s coming back, just her, in October, and I can hardly wait. With Doug, Joylene, and my sister Rosie, I’m even more convinced that friends are the greatest blessing we have in this world.

I did see Dr. Z this morning and had my labs done. In my labs, one thing was lower than normal, and one thing was higher. I don’t know what either thing does or means, so not sure how to feel about it. One is probably something to do with kidney function, and having only one kidney does mean my function probably won’t be quite perfect. If Dr. Z is concerned, he’ll get in touch. Have I mentioned that I have come to have an incredible respect for Dr. Z? Yeah, he’s not the hand holding type of doctor, but he makes me feel like he knows his shit. I feel sure of him and trust that I am in good hands with him handling my case.

Here’s the plan. Dr. Z didn’t think I’d had new foot sores, thought it’s still the aftereffects, peeling and such, from the sores when I was on the first high dose of the meds. We have a compromise treatment. I will take the Cabometyx for three weeks, then one week off, then three, then one off. This may change after the CT scan. He said quite firmly today that if the scan shows no improvement, he will take me off this med at once. He said, “Why put you through all this unless it’s actually doing something.” So, two weeks from today I have the scan, and I see the doc again on the 24^th of October, two days after my 67^th birthday. I’m celebrating this birthday. I have cancer, and I’m alive to celebrate that day! As for the treatment plan, I’m happy with it. It didn’t feel right to take nothing to treat the cancer, at least until we know if it’s doing anything good for me. My sister will be staying with me, to help, make sure I eat and so forth.

Fingers crossed that I have scan results by my birthday!

STRUGGLING

Day 31 of second treatment plan

September 5, 2024

I Know I haven’t written for a while. It felt like I was just saying the same old things over and over. Who wants to read that? And when I get down about things, I tend to keep that inside. Years ago, my dad’s third wife, told me “Sherry, we like you when you’re happy. We don’t like you when you’re not.” Well that taught me good. I always tended this way. I can remember instances in my past, things in childhood that went way wrong, and I didn’t always tell people how I felt if it was bad feelings. My tendency was to try to take care of the people around me. Third Wife’s comment just solidified that and became etched in my personality. So, I just didn’t want to talk about being down and worried, or that I just rarely feel good anymore.

What’s going on with me? little bits of just about every side effect I could have. I had the diarrhea off and on for days. Slight nausea but still no vomiting. My last lab work, showed I had a serious UTI with dangerous bacteria. The antibiotics for that one near made me lose my mind because the pills are hard to swallow even when broken in two, and they gave me terrible stomach aches. Loss of appetite is constant sometimes several days in a row, and when I was having the stomach pain from the antibiotics, I wanted never to eat again.

I started thinking I might be developing hand and foot syndrome again. it started because skin that had died from the original sores peeled off. The new skin was tender and painful at first. Even Dr. Z said he thought my pain was just from that new skin. But the pain got worse for a few days, and I was worried. Discouraged too. I thought if he made me give up the chemo pills, I’d finally have the meltdown I haven’t had yet. Thinking Dr. Z would tell me to drop the meds, I didn’t take them two days in a row this week. But my feet got better so fast, and it wasn’t like before when it took days to improve. I decided maybe the doctor and friends who’d looked at the sores and thought there were no sores just might be right. I started the meds again. Now it’s just wait and see on the hand and foot thing.

The overall worst side effect is the fatigue. And it doesn’t help that when I lie down and try to sleep, I can’t fall asleep. I might have a light doze for 15 minutes, but I can’t remember the last time I actually slept through the night or was able to sleep a few hours during the day. I feel wiped out. Or as a character in one of my favorite books said, “I feel dead and dug up.”. I’m too tired to come up with things to fill my hours during the day. I can’t work on my novel with this level of exhaustion. I don’t want to listen to music because I can’t sing. My voice is trashed and even talking frustrates me because of how my voice is being affected with the chemo. I read fan fiction or old romance novels, mind candy to help the hours pass. At night I toss and turn and do it all over again. I even wrote a poem about it today, and I only write poetry when I am emotionally undone over something.

And yes, I’m feeling sorry for myself. So sue me. There are days I feel like I can’t go on, or don’t want to go on because I don’t have the energy. People tell me I’m strong, but there are days when I don’t want to be strong and I want people to be strong for me. I worry all the time, hard as I try to stay in hope for my future.

Occasionally, I work on funeral plans, just in case. I know what music I want to be played. I haven’t made a lot of plans, but I do think about it from time to time and have even discussed some of it with Rosie. It’s probably a maudlin mind space to fall into, but being exhausted makes it hard to feel positive. And I suppose all this is actually normal, but it’s truly hard to cope with it. I’ve never felt so negative, and I’ve been through a lot of hard things.

To add to this, I’m having a terrible flare up of my arthritis. Every joint I still have hurts, from my jaw, to my fingers, to my elbows and shoulders. I can’t take anything for it, other than Tylenol, and Tylenol does absolutely nothing for auto immune disease types of arthritis.

In other news, I have my first scan on the 18^th of this month, see Dr. Z on the 26^th. Maybe we’ll have good news and that will pop me right out of my funk. Dr. Z said, “we need to find out if this stuff is actually doing something.” I happened to like that comment very much.

Speaking of Dr. z, I had my usual five-minute appointment with him, but it was so different. He seemed happy, happy that the lower dose Cabometyx was doing so well for me. When he was ready to leave, he shook my hand, something he’s never done before. And then the big shock was that he acknowledged Shani. He’s never commented about her, quietly lying at my feet during all the appointments. He’s never indicated he knows she is there at all. But this time, he did acknowledge her existence and even petted her with my permission. He even told us about his 15-pound dog at home!