This is going to be long, so if you're not up to reading, that's fine with me.
Firstly, I thank those of you who PM, email, call me regularly. It means more to me than you will ever know. You have turned into true friends and I appreciate you so much.
I have bladder cancer. All those UTIs that I've been dealing with since the beginning of the year weren't UTIs at all. It's bladder cancer. I kept asking my doctor, "Is it cancer?" "No, Pam, it's not cancer." But it was. Til I finally got the go-ahead to see the urologist, it was in the bladder wall and considered Stage 2. I'm angry; I wanted to be referred back in the spring, but kept getting "There's no need, Pam; this is not cancer." But it was. I found out in mid-October and had surgery at the end of October to remove it. And the surgery went well; they think they did get it all.
But because the cancer was in the bladder wall, I need chemo. They're doing chemo first to make sure that any cancer the surgery missed (not that it did, but they want to make sure). Following the end of the chemo, my body will need one to two months of healing from the chemo. Then they'll take the bladder. They haven't decided the route yet, whether I'll just wear a ostomy bag or whether they'll just create a bag from part of my intestine. Either way, that will be followed by either more chemo or maybe some immunotherapy. Either way, it's a long road and sometimes it's pretty damn rough.
I need six rounds of chemo, 3 days every other week. My chemo weeks consists of 3 consecutive days of chemo: short day, followed a long day, followed by 2 hours of IV/fluids and a growth factor injection for white blood cells on the third day. My "medical appts" are all for chemotherapy. But even on my off-chemo weeks, I usually have blood work twice a week with IV/fluids. I've had 3 rounds of chemo so far and have managed to deal with it fairly well and I'm already half-way done with chemo. I will have my last chemo round mid-February and I have an appt with my urologist to see when surgery will take place and what kind of surgery I'm looking at having.
I've had meltdowns and Rick has had meltdowns. They were more toward the beginning when we had no idea what was going on and what was going to happen. They've subsided as we've gotten more knowledge and can deal with what we know. Knowledge really is power. I had a pretty bad meltdown the other week when I tried to bake cookies and realized I was too damn tired to do it. This is not an "Oh, I didn't sleep well last night" tired. This is an "I'm tired deep inside my bones" tired, the kind that I feel like I can't get up and walk tired. My arms ache, my legs ache, and damn it, I'm tired. Got the cookies made and hit the couch for the rest of the day.
We had our Christmas dinner on Sunday, and then a brunch on Monday because Rick wanted me to rest Monday afternoon as I started chemo on Tuesday. He helped me on Monday with the brunch. A lot of times we work together on meals. Or I cook and he'll clean up afterward. He'll vacuum and I'll swiffer. He changes bedsheets and we both work on laundry. It all works out. But some days, I'm just exhausted. He understands.
He scoops the litterboxes as I can't be around the litter. But then I get up a lot of mornings, simply because I'm awake anyway and realize that I'm not going to be able to go back to sleep. So I tend to the girls and he gets to sleep in.
It's interesting what I can and cannot eat. No salads...period. No lettuce, tomatoes, peppers, basically any kind of produce. Salmonella does not wash off. No frozen fruits for the same reason. I am allowed my favorite Granny smiths, but it must be carefully washed and completely peeled. We use our produce from the garden as we trust that. I drink one cup of caffeinated coffee a day and, half the time I don't finish it. Fluids are a big issue with me; I've never been a big water drinker anyway, and this makes it worse. Nausea is a big deal for me. Gatorade sucks little green worms, IMO, anyway. When I finally found caffeine-free Pepsi (first time since Covid), I was giddy. Yes, my Pepsi counts as fluids as long as it's decaf. And life is good again. Decaf iced tea works. I've developed a thing for orange juice, but only Tropicana; the others have an after-taste (lots of foods have an after-taste; it's normal with chemo). We have one bottle of OJ that's just for me, it has my name on it, and I carry it throughout the house with me; if it's with me, I tend to drink it more. After the first round of chemo, I ended up in the ER, needing fluids. I don't want to repeat that episode.
Hair. Gone. I started losing it right after beginning the second round of chemo. I ran my fingers through my hair and took out huge strands. So I started wearing my hair up in a clip. Wasn't helping. I put it back in a low pony tail and, that morning, when I took my tail out, half my hair came with it. My sister came over and buzzed me. First time in years I saw my sister cry. After she left, I got in the shower and cried like a baby. Those of you who know me well know that I have a severe complex about short hair. You can imagine how I did not deal well with my buzz cut. I have two wigs; my sister is coming over on Friday to help with them and I'll start wearing them. My hope is that, when I don't need them anymore I can donate them to someplace who can clean them and give them to somebody to use.
Covid. We are not allowed to have people in the house who have not been completely vaccinated and who won't mask. My sister and BIL are completely vaccinated and still mask around us, unless they're having dinner with us. I trust them completely. My brother and SIL are not vaccinated, but are willing to mask. Our son and his family are not vaccinated and don't approve of masking...period. He also thinks that chemo is big business (and it is, but I feel that it's also the option for me to take) and we're not agreeing on a lot of things with my treatment. We sent a check down to them for Christmas and that was that. I can go for groceries only on non-chemo weeks and only with a mask. Rick bowls only on my non-chemo weeks and with a mask. In a show of solidarity with Rick, his teammates will mask up when he bowls. Rick masks up when he visits with his mom and he tries not to go in often. I won't go near the nursing home, but I do talk to his mom on the phone. I take care of her Kindle and, when I bake, Rick takes whatever I've baked up to the home and drops it off at the front desk for her.
So we're dealing. I'm not overly amused with what's going on, but we're dealing. The survival rate is pretty good for Stage 2 and the way we're dealing with it makes that a little better. Doing the chemo first, then bladder removal, then chemo/immunotherapy is the cautious route and I'm OK with it.
Thank for reading....I know it's a book, but, you know, it was also a way to get my thoughts on "paper" too. Cancer is an insidious beast. There you are, minding your business, and whomp! it comes out and slaps you up alongside the head!
Firstly, I thank those of you who PM, email, call me regularly. It means more to me than you will ever know. You have turned into true friends and I appreciate you so much.
I have bladder cancer. All those UTIs that I've been dealing with since the beginning of the year weren't UTIs at all. It's bladder cancer. I kept asking my doctor, "Is it cancer?" "No, Pam, it's not cancer." But it was. Til I finally got the go-ahead to see the urologist, it was in the bladder wall and considered Stage 2. I'm angry; I wanted to be referred back in the spring, but kept getting "There's no need, Pam; this is not cancer." But it was. I found out in mid-October and had surgery at the end of October to remove it. And the surgery went well; they think they did get it all.
But because the cancer was in the bladder wall, I need chemo. They're doing chemo first to make sure that any cancer the surgery missed (not that it did, but they want to make sure). Following the end of the chemo, my body will need one to two months of healing from the chemo. Then they'll take the bladder. They haven't decided the route yet, whether I'll just wear a ostomy bag or whether they'll just create a bag from part of my intestine. Either way, that will be followed by either more chemo or maybe some immunotherapy. Either way, it's a long road and sometimes it's pretty damn rough.
I need six rounds of chemo, 3 days every other week. My chemo weeks consists of 3 consecutive days of chemo: short day, followed a long day, followed by 2 hours of IV/fluids and a growth factor injection for white blood cells on the third day. My "medical appts" are all for chemotherapy. But even on my off-chemo weeks, I usually have blood work twice a week with IV/fluids. I've had 3 rounds of chemo so far and have managed to deal with it fairly well and I'm already half-way done with chemo. I will have my last chemo round mid-February and I have an appt with my urologist to see when surgery will take place and what kind of surgery I'm looking at having.
I've had meltdowns and Rick has had meltdowns. They were more toward the beginning when we had no idea what was going on and what was going to happen. They've subsided as we've gotten more knowledge and can deal with what we know. Knowledge really is power. I had a pretty bad meltdown the other week when I tried to bake cookies and realized I was too damn tired to do it. This is not an "Oh, I didn't sleep well last night" tired. This is an "I'm tired deep inside my bones" tired, the kind that I feel like I can't get up and walk tired. My arms ache, my legs ache, and damn it, I'm tired. Got the cookies made and hit the couch for the rest of the day.
We had our Christmas dinner on Sunday, and then a brunch on Monday because Rick wanted me to rest Monday afternoon as I started chemo on Tuesday. He helped me on Monday with the brunch. A lot of times we work together on meals. Or I cook and he'll clean up afterward. He'll vacuum and I'll swiffer. He changes bedsheets and we both work on laundry. It all works out. But some days, I'm just exhausted. He understands.
He scoops the litterboxes as I can't be around the litter. But then I get up a lot of mornings, simply because I'm awake anyway and realize that I'm not going to be able to go back to sleep. So I tend to the girls and he gets to sleep in.
It's interesting what I can and cannot eat. No salads...period. No lettuce, tomatoes, peppers, basically any kind of produce. Salmonella does not wash off. No frozen fruits for the same reason. I am allowed my favorite Granny smiths, but it must be carefully washed and completely peeled. We use our produce from the garden as we trust that. I drink one cup of caffeinated coffee a day and, half the time I don't finish it. Fluids are a big issue with me; I've never been a big water drinker anyway, and this makes it worse. Nausea is a big deal for me. Gatorade sucks little green worms, IMO, anyway. When I finally found caffeine-free Pepsi (first time since Covid), I was giddy. Yes, my Pepsi counts as fluids as long as it's decaf. And life is good again. Decaf iced tea works. I've developed a thing for orange juice, but only Tropicana; the others have an after-taste (lots of foods have an after-taste; it's normal with chemo). We have one bottle of OJ that's just for me, it has my name on it, and I carry it throughout the house with me; if it's with me, I tend to drink it more. After the first round of chemo, I ended up in the ER, needing fluids. I don't want to repeat that episode.
Hair. Gone. I started losing it right after beginning the second round of chemo. I ran my fingers through my hair and took out huge strands. So I started wearing my hair up in a clip. Wasn't helping. I put it back in a low pony tail and, that morning, when I took my tail out, half my hair came with it. My sister came over and buzzed me. First time in years I saw my sister cry. After she left, I got in the shower and cried like a baby. Those of you who know me well know that I have a severe complex about short hair. You can imagine how I did not deal well with my buzz cut. I have two wigs; my sister is coming over on Friday to help with them and I'll start wearing them. My hope is that, when I don't need them anymore I can donate them to someplace who can clean them and give them to somebody to use.
Covid. We are not allowed to have people in the house who have not been completely vaccinated and who won't mask. My sister and BIL are completely vaccinated and still mask around us, unless they're having dinner with us. I trust them completely. My brother and SIL are not vaccinated, but are willing to mask. Our son and his family are not vaccinated and don't approve of masking...period. He also thinks that chemo is big business (and it is, but I feel that it's also the option for me to take) and we're not agreeing on a lot of things with my treatment. We sent a check down to them for Christmas and that was that. I can go for groceries only on non-chemo weeks and only with a mask. Rick bowls only on my non-chemo weeks and with a mask. In a show of solidarity with Rick, his teammates will mask up when he bowls. Rick masks up when he visits with his mom and he tries not to go in often. I won't go near the nursing home, but I do talk to his mom on the phone. I take care of her Kindle and, when I bake, Rick takes whatever I've baked up to the home and drops it off at the front desk for her.
So we're dealing. I'm not overly amused with what's going on, but we're dealing. The survival rate is pretty good for Stage 2 and the way we're dealing with it makes that a little better. Doing the chemo first, then bladder removal, then chemo/immunotherapy is the cautious route and I'm OK with it.
Thank for reading....I know it's a book, but, you know, it was also a way to get my thoughts on "paper" too. Cancer is an insidious beast. There you are, minding your business, and whomp! it comes out and slaps you up alongside the head!
