Well, it's official. The hair is starting to go. I ran my fingers through my hair over the sink when I got up today, and lo and behold: hair in the sink.
*insert long, pensive pause here*
So, there we are. It's not like it's a surprise. It's not as if I didn't have cancer and weren't undergoing intensive chemotherapy, and then all of a sudden, inexplicably, my hair follicles began to leap, willy nilly, from my scalp. This is not unprecedented. And I will have a wig on Monday.
*calming thoughts, calming thoughts*
I'll wait till it's visibly thinned, and then Lorraine and I will have a little head-shaving fun. Telling Lorraine about Heather's plan to give herself a mohawk was all it took to make it my plan, too. So Sarah will have a mohawk for a moment in time. Big fun! Actually, what we've really been looking forward to is putting peanut butter on the ol' bare dome and letting little Louie just go off on it! I envision myself just giggling and giggling like a little girl. Peals of laughter! That's what I'm looking forward to -- not sadness at fallen follicles.
A lot of us feel a bit of shock and sadness when the hair actually starts to go, despite great mental and logistical preparedness. It's just hard. I'm going to cut it short and then go on to shave it, rather than trying to stoically withstand the trauma of mopping it up off my pillow and cleaning out the sink and tub drains.
Now, because I know you long for it, here's my side effect update! (Hear the trumpets?) Bigtime chemohead today. Bad headache pain, head congestion, dizziness, and general fog. I'm downing the prune juice and stool softening pills, and I may break down and take some Ex Lax. Gawd, I've become someone's old granny.....or maybe just your standard chemo patient.
Sunday, January 30
Saturday, January 29
Second Day After Chemo #2
I slept for 14 hours last night...and then was without energy all day today. No significant nausea, but the constipation continues to be quite the issue. The head stuff has started: fuzziness, dizziness, and headache.
I still think that I'm doing pretty well overall, though. I'm dizzy now, so I'll close here, and pick up this fascinating line tomorrow. Lucky you!
I still think that I'm doing pretty well overall, though. I'm dizzy now, so I'll close here, and pick up this fascinating line tomorrow. Lucky you!
Friday, January 28
First Day After Chemo # 2
Just a quick update. I've had a good day, overall. Nothing major, aside from pretty significant constipation (eep!), mild nausea, steady headache, lots of fatigue, and a little mental fuzziness. Oh, and an occasional tickly cough. No mouth sores yet -- I'm trying to stay on top of the rinses to stave them off this time around.
For the constipation, I had my standard All Bran Extra Fiber/Kashi Go Lean combo breakfast, followed by lots of fluid, 2 stool softener pills, lentil and kale soup, high fiber whole wheat and millet bread, and a big salad. I'll just say that I'm hoping for more progress tomorrow.
So, I'm doing well. Hopefully, this will continue.
For the constipation, I had my standard All Bran Extra Fiber/Kashi Go Lean combo breakfast, followed by lots of fluid, 2 stool softener pills, lentil and kale soup, high fiber whole wheat and millet bread, and a big salad. I'll just say that I'm hoping for more progress tomorrow.
So, I'm doing well. Hopefully, this will continue.
Thursday, January 27
Chemo # 2 -- 2 Down, 10 to Go!
And another one bites the dust. Hooyah! So far so good. My beloved Lorraine was with me the whole time, as she's adamant about being there for every single treatment she can. What a partner, friend, and love she is. There were other married women there, and they were alone. Not I -- I sat with her touching me and getting me ice and water and yogurt and a popsicle and coffee. We played word games and pinball on the computer, and read to one another from magazines, and watched Ellen on the little T.V., laughing together at all the same parts. I love her so much, and thank God for her constantly. What a gift from God she is -- what a gift from God our love is. How could anyone have a problem with it? But we always get looks from somebody, everyplace we go. It never fails -- even in infusion rooms, where you'd think the focus would be on what we share in common, rather than the gender of the person holding my hand. It's tiring and tiresome, but we just acknowledge it to one another and then move on. Of course, then I always want to make out, but we refrain! *snark* I usually can't resist giving her a little peck on the cheek though, for everyone's benefit, most of all ours.
Accessing the port proved a challenge, but after that, everything went smoothly. I put the [generic, and slightly less effective] Emla-esque cream on more than an hour beforehand, so when she stuck me the first time, there was no pain. I was aware of the needle going in, but there was no pain. Unfortunately, the needle wasn't long enough to go into it, because it's set in deeply. So the first nurse went and got a longer needle and another nurse for help, and together, they got it the second time. The first needle was apparently going into the right spot, but just wasn't long enough to do the job, as my surgeon set it in deeply. I didn't know this, but it doesn't protrude within my chest wall as far as they typically do -- which will be better, cosmetically, but isn't as easy to access. No biggie, though -- they just put in my chart that the longer needle is needed and, as the nurses work on a team approach so you don't always get the same one, I'll need to remind them beforehand each time. That's easy.
Anyway, once the needle was in, I felt pressure, but no pain. The whole thing took six hours. Again I had to be tested for Bleo tolerance, as some folks display an allergic reaction to the Bleomycin. This involves, as it did last time, injecting a sample dose of the Bleomycin and then waiting an hour to see if I react. As before, no adverse reaction, so now we know and won't have to test anymore going forward.
My white blood cell count was below the minimum of 10, but we continued anyway. It was 8.9, and my red blood cell count and hemoglobin are low at 3.94 and 11.4, respectively, but not I'm not anemic yet. My platelets are at 379, so I think, based on my limited knowledge, that they're fine. My nurse told me specifically about the WBC count, because she wanted me to know that they were proceeding with treatment anyway, despite the deficient count. I feel lucky, because in most other treatment centers they would have suspended treatment until my counts went up after Neutrogen or Neulasta shots. They would have sent me away, to return after my counts were back up. My oncology nurse on the first day explained to me that it is the hospital's practice with Hodgkins patients to move forward with treatment in the case of low counts, as their stance is that the most important thing is to maintain momentum in the chemo treatments. They deal with the white blood cell counts afterwards. When I asked today about Neupogen or Neulasta, I was told that we would look at that at the next treatment, after the new counts were in, as sometimes they go back up. Well, alrighty then! Should I end up needing the Neupogen or Neulasta, I'm hoping I end up with the latter, as it's a shot given at the hospital every three weeks, as opposed the Neupogen, which is a daily shot either self-administered at home or received daily at the hospital. Both frequently cause significant bone and joint pain, as they're putting your bone marrow into overdrive in white blood cell production -- but the Neupogen is usually more painful overall than the Neulasta. Both are enormously effective. Anyway, I requested the lab results so I could jot down my counts, and I'm going to have one of the nurses explain my counts to me next time, so I have a better understanding of how I'm doing.
Anyway, after treatment, I came home and watched Oprah for a half hour and then took a 3 1/2 hour nap, leaving Lorraine making a pot roast (minus the roast -- she just browns the meat and then cooks it in stock with potatoes and veggies.) It's so yummy! We eat it with a baguette. So when I woke up, it was ready, and we ate it together watching The Apprentice. Brian, who got fired tonight, is the cousin of one of Lorraine's managers (she's a retail District Manager) so we had a particular interest in his buffoonery and leadership ineptitude.
I feel just fine so far. I have the usual fatigue, headache, and gas pain, but it's ok. I know I'll be really exhausted tomorrow, but apart from that, I don't really know what to expect. I don't know if I'll feel like last time or worse. Either way, it's all good. I have no demands on me, and Lorraine won't let me overdo it or tax myself too much. I'm just glad I've got another one under my belt, and am that much closer to reaching the end of this. I won't have another PET scan until after 3 cycles (3 months) so I've got a couple of months to go. It's my prayer that the scans show the cancer, if not completely gone, then almost completely gone. It's different than lung cancer, for example. I don't have a tumor in one location to reduce -- I have many, many tumors, in my neck, my chest and, to a lesser degree, in my abdomen. So the tumors are diffused, all over the place, and in my case, they're different sizes. That's why they give high dose treatments every 2 weeks for 6-8 months, and frequently follow it up with radiation. Hodgkins has an extremely rough road to healing, but a much better chance of actually getting healed. Remission rates are better, and cure rates are better. I'm so grateful that we got it before it moved into any of my organs. Dr. Chaudhry said that my bone marrow biopsy came back a definite "negative;" however, there were "irregularities" present within it which were not a cause for concern and were normal given that I have Stage III cancer. Pretty scary stuff.
It's all pretty scary, and at the same time I know that I'm in good hands, I'm blessed with a loving, loyal partner, and I can focus my energies on taking care of myself during this process and staying in step with Lorraine throughout. Divorce/breakup rates are very high during and after a cancer diagnosis, even in presumably strong relationships. This relationship will NOT be a casualty to this cancer. Over my dead body.
Accessing the port proved a challenge, but after that, everything went smoothly. I put the [generic, and slightly less effective] Emla-esque cream on more than an hour beforehand, so when she stuck me the first time, there was no pain. I was aware of the needle going in, but there was no pain. Unfortunately, the needle wasn't long enough to go into it, because it's set in deeply. So the first nurse went and got a longer needle and another nurse for help, and together, they got it the second time. The first needle was apparently going into the right spot, but just wasn't long enough to do the job, as my surgeon set it in deeply. I didn't know this, but it doesn't protrude within my chest wall as far as they typically do -- which will be better, cosmetically, but isn't as easy to access. No biggie, though -- they just put in my chart that the longer needle is needed and, as the nurses work on a team approach so you don't always get the same one, I'll need to remind them beforehand each time. That's easy.
Anyway, once the needle was in, I felt pressure, but no pain. The whole thing took six hours. Again I had to be tested for Bleo tolerance, as some folks display an allergic reaction to the Bleomycin. This involves, as it did last time, injecting a sample dose of the Bleomycin and then waiting an hour to see if I react. As before, no adverse reaction, so now we know and won't have to test anymore going forward.
My white blood cell count was below the minimum of 10, but we continued anyway. It was 8.9, and my red blood cell count and hemoglobin are low at 3.94 and 11.4, respectively, but not I'm not anemic yet. My platelets are at 379, so I think, based on my limited knowledge, that they're fine. My nurse told me specifically about the WBC count, because she wanted me to know that they were proceeding with treatment anyway, despite the deficient count. I feel lucky, because in most other treatment centers they would have suspended treatment until my counts went up after Neutrogen or Neulasta shots. They would have sent me away, to return after my counts were back up. My oncology nurse on the first day explained to me that it is the hospital's practice with Hodgkins patients to move forward with treatment in the case of low counts, as their stance is that the most important thing is to maintain momentum in the chemo treatments. They deal with the white blood cell counts afterwards. When I asked today about Neupogen or Neulasta, I was told that we would look at that at the next treatment, after the new counts were in, as sometimes they go back up. Well, alrighty then! Should I end up needing the Neupogen or Neulasta, I'm hoping I end up with the latter, as it's a shot given at the hospital every three weeks, as opposed the Neupogen, which is a daily shot either self-administered at home or received daily at the hospital. Both frequently cause significant bone and joint pain, as they're putting your bone marrow into overdrive in white blood cell production -- but the Neupogen is usually more painful overall than the Neulasta. Both are enormously effective. Anyway, I requested the lab results so I could jot down my counts, and I'm going to have one of the nurses explain my counts to me next time, so I have a better understanding of how I'm doing.
Anyway, after treatment, I came home and watched Oprah for a half hour and then took a 3 1/2 hour nap, leaving Lorraine making a pot roast (minus the roast -- she just browns the meat and then cooks it in stock with potatoes and veggies.) It's so yummy! We eat it with a baguette. So when I woke up, it was ready, and we ate it together watching The Apprentice. Brian, who got fired tonight, is the cousin of one of Lorraine's managers (she's a retail District Manager) so we had a particular interest in his buffoonery and leadership ineptitude.
I feel just fine so far. I have the usual fatigue, headache, and gas pain, but it's ok. I know I'll be really exhausted tomorrow, but apart from that, I don't really know what to expect. I don't know if I'll feel like last time or worse. Either way, it's all good. I have no demands on me, and Lorraine won't let me overdo it or tax myself too much. I'm just glad I've got another one under my belt, and am that much closer to reaching the end of this. I won't have another PET scan until after 3 cycles (3 months) so I've got a couple of months to go. It's my prayer that the scans show the cancer, if not completely gone, then almost completely gone. It's different than lung cancer, for example. I don't have a tumor in one location to reduce -- I have many, many tumors, in my neck, my chest and, to a lesser degree, in my abdomen. So the tumors are diffused, all over the place, and in my case, they're different sizes. That's why they give high dose treatments every 2 weeks for 6-8 months, and frequently follow it up with radiation. Hodgkins has an extremely rough road to healing, but a much better chance of actually getting healed. Remission rates are better, and cure rates are better. I'm so grateful that we got it before it moved into any of my organs. Dr. Chaudhry said that my bone marrow biopsy came back a definite "negative;" however, there were "irregularities" present within it which were not a cause for concern and were normal given that I have Stage III cancer. Pretty scary stuff.
It's all pretty scary, and at the same time I know that I'm in good hands, I'm blessed with a loving, loyal partner, and I can focus my energies on taking care of myself during this process and staying in step with Lorraine throughout. Divorce/breakup rates are very high during and after a cancer diagnosis, even in presumably strong relationships. This relationship will NOT be a casualty to this cancer. Over my dead body.
Wednesday, January 26
Chemo #2 Tomorrow
Tomorrow's Chemo-Day! I'm excited! I'm not being facetious; I really am excited about getting another one over with. I don't like how I feel afterwards, and I know that the side effects will just get worse -- but I have to have them right in front of me before I can put them behind me, right?
From me to you, cancer: "Bring it on."
I'm also hoping that this second treatment will bring an end to the itching. It subsided somewhat after Chemo #1, but it's still just so maddening.
In other news, a lovely and generous woman is going to come to my home next weekend to help me with my knitting! She responded to my introduction post at the very active forum of the fabulous knitting site, Knitter's Review, with an incredibly kind offer to give me some pointers. Is that not the nicest thing? She's an experienced and expert knitter, and she actually teaches knitting classes! She also participates in several local knitting groups, so I'm also planning to check them out later on! I'm such a lucky girl, it's amazing to me.
Oh! And I got my blood drawn today in preparation for tomorrow's chemo -- gotta check the platelets, the white blood cell count, etc. before each treatment -- and the place my insurance mandates I go, Quest Diagnostic, won't draw my blood through my port. That pretty much sucks, because that's one of the benefits of having a port; you're supposed to be able to get blood drawn through it. They just don't have the capability or training, apparently. Bummer.
I had to reschedule my wig appointment from today to Monday so Lorraine could come. Where I'm going, they only sell medical quality wigs -- for alopecia patients -- so they don't sell Raquel Welch wigs. But they assured me that they have trendy styles and colors, so I'll take a pic of that wig with me to see if we can match it up. All of their wigs are monofilament, like that one, but apparently there's a difference in the materials used, because the bare scalp -- and in particular, the nerve-ending sensitive scalp of a chemo patient -- is very tender and susceptible to abrasion. I don't want abrasion, and I do want cute hair. I'll keep you posted.
Think of me at 9:15 a.m. EST tomorrow morning, if you can. That's when my port will be accessed for the very first time! An hour beforehand, I'll apply Emla cream, to numb the skin so I shouldn't even feel the poke!
From me to you, cancer: "Bring it on."
I'm also hoping that this second treatment will bring an end to the itching. It subsided somewhat after Chemo #1, but it's still just so maddening.
In other news, a lovely and generous woman is going to come to my home next weekend to help me with my knitting! She responded to my introduction post at the very active forum of the fabulous knitting site, Knitter's Review, with an incredibly kind offer to give me some pointers. Is that not the nicest thing? She's an experienced and expert knitter, and she actually teaches knitting classes! She also participates in several local knitting groups, so I'm also planning to check them out later on! I'm such a lucky girl, it's amazing to me.
Oh! And I got my blood drawn today in preparation for tomorrow's chemo -- gotta check the platelets, the white blood cell count, etc. before each treatment -- and the place my insurance mandates I go, Quest Diagnostic, won't draw my blood through my port. That pretty much sucks, because that's one of the benefits of having a port; you're supposed to be able to get blood drawn through it. They just don't have the capability or training, apparently. Bummer.
I had to reschedule my wig appointment from today to Monday so Lorraine could come. Where I'm going, they only sell medical quality wigs -- for alopecia patients -- so they don't sell Raquel Welch wigs. But they assured me that they have trendy styles and colors, so I'll take a pic of that wig with me to see if we can match it up. All of their wigs are monofilament, like that one, but apparently there's a difference in the materials used, because the bare scalp -- and in particular, the nerve-ending sensitive scalp of a chemo patient -- is very tender and susceptible to abrasion. I don't want abrasion, and I do want cute hair. I'll keep you posted.
Think of me at 9:15 a.m. EST tomorrow morning, if you can. That's when my port will be accessed for the very first time! An hour beforehand, I'll apply Emla cream, to numb the skin so I shouldn't even feel the poke!
Tuesday, January 25
Mission Marla
Marla, one of my favorite blogfriends, has long had difficulty posting comments on my blog. I thought it was because the comment program that I use, Haloscan, was incompatible with her browser, as is the case for Clarrie, when she uses Firefox rather than Internet Explorer. I have Firefox also, and when I access my blog using it rather than IE, all the blog's elements fall into one column, with the right-hand column's items repositioned below the post entries at the bottom of the page. All the links work but the comments, as that program is apparently incompatible with Firefox.
However, it has just come to my attention that when Marla views my blog, it looks ALL mixed up! Additionally, she can access the comments and other links halfway down the page, but not above that. She has very kindly posted links to page pics on her blog. I'd be very interested in hearing others' experiences with this, to see if the problem is widespread. Marla has a Mac, so I don't know if that's relevant or not. It seems to my technosimple mind that there must be a couple of things going on, with the Haloscan program/Firefox incompatibility issue existing irrespective of the element layout issue.
Help, anyone! I love Marla, and I want her to have a happy, stress-free life...and I don't want to have this be an issue for anyone visiting my blog.
I'll post more later.
However, it has just come to my attention that when Marla views my blog, it looks ALL mixed up! Additionally, she can access the comments and other links halfway down the page, but not above that. She has very kindly posted links to page pics on her blog. I'd be very interested in hearing others' experiences with this, to see if the problem is widespread. Marla has a Mac, so I don't know if that's relevant or not. It seems to my technosimple mind that there must be a couple of things going on, with the Haloscan program/Firefox incompatibility issue existing irrespective of the element layout issue.
Help, anyone! I love Marla, and I want her to have a happy, stress-free life...and I don't want to have this be an issue for anyone visiting my blog.
I'll post more later.
Sunday, January 23
I am all about the hair.
So, the wig lady finally called me back. No apology for the week-long delay in her response, despite the fact that her message states that she promises a reply within one day of your call. But that's not the reason I'm not going to buy the wig from her. I'm going with the original place recommended to me because (1) this woman doesn't actually make any of the wigs -- they're all name brands and therefore available anywhere else, and (2) she doesn't handle the insurance reimbursement -- you pay full price and then submit the receipt to the insurance company for reimbursement along with the prescription, vs. the other place, that takes the prescription from you and deducts the reimbursable amount from the bill on the spot, going on to handle the insurance gobbledigook on their own. So, what would the benefit be to dealing with that other no-service-lovin' fool? That's right -- none.
I'm thinking of getting something along the lines of this:
It's a monofilament wig, so it's got some advantages for the baldies: it's less hot and itchy, your own scalp color shows through, and the hair is easier to style.
In other news, I'm very concerned about the comments situation here. It seems that a pattern has emerged in which a number of folks are having difficulty posting comments to my blog, and that's just awful news to me. I'm worried about deleting the Haloscan program I've been using because I'll lose all of the previously entered comments -- very sad indeed. At the same time, it's not ok that Marla has to go to such [amazingly clever] lengths to be able to comment here, and that some others are simply unable to do so at all. I don't know if it's a browser thing or what, but I'm going to visit the Haloscan website and see if they can help me with it. If not, then I guess I'll delete them -- and all the amazing comments that you folks left me that I go back to for sustainance when I'm feeling scared and sad.
I'll figure it out, one way or another.
Hey, let me know about the hair, ok?
I'm thinking of getting something along the lines of this:
It's a monofilament wig, so it's got some advantages for the baldies: it's less hot and itchy, your own scalp color shows through, and the hair is easier to style.
In other news, I'm very concerned about the comments situation here. It seems that a pattern has emerged in which a number of folks are having difficulty posting comments to my blog, and that's just awful news to me. I'm worried about deleting the Haloscan program I've been using because I'll lose all of the previously entered comments -- very sad indeed. At the same time, it's not ok that Marla has to go to such [amazingly clever] lengths to be able to comment here, and that some others are simply unable to do so at all. I don't know if it's a browser thing or what, but I'm going to visit the Haloscan website and see if they can help me with it. If not, then I guess I'll delete them -- and all the amazing comments that you folks left me that I go back to for sustainance when I'm feeling scared and sad.
I'll figure it out, one way or another.
Hey, let me know about the hair, ok?
Saturday, January 22
I knit now. Yeah, I'm a knitter.
So, I knit now. (She said casually.) I learned in like an hour! Ok, so I'm at this crawling infant sort of knitting stage, but I learned the slip knot, how to cast on, and how to make a knit stitch using the Continental method. Next up: how to bind off, how to make stripes, and how to make purl and rib stitches. More to follow.
I'm pretty psyched! There's a lot to think about as you're doing it, but it definitely gets easier with repetition. I've already picked up a lot of speed, with pauses to make sure my counts are right, and my work looks -- to my novice eye, anyway -- pretty tidy!
Still no word from the wig maker -- can you believe that? -- so it's a good thing I'm learning to knit! I'm thinking I'll be able to knit a cap before the woman allows me to purchase one of her damned wigs! It's really not nice to do that to someone with cancer, you know? Not even to return the two calls is pretty rude. Oh well, I'm sure there's some explanation. I can always go to that original place that's a little more expensive. I know they'll take my money with a couple of day's notice. (Appointments only, like this other elusive woman.) I can only get one wig, though, so I'd really rather get the prettier one, even if it means giving the money to someone who's service I already find disappointing. *sigh* I think I'll just begin to stalk her with guilt-inspiring messages on Monday, give it till Wednesday, and then make an appointment at the other place if I still haven't heard from her. This week I'll have my second treatment, which frequently -- although not always -- prompts the beginning of hair loss, so I'm eager to get something lined up so as not to get caught "in between." Not nice for the self-esteem, you know? My hair is both baby fine and color treated, so I wouldn't bet on it holding out for too long.
And in the meantime, I'm honing my knitting skills, so at least the dome will be a warm one!
I'm pretty psyched! There's a lot to think about as you're doing it, but it definitely gets easier with repetition. I've already picked up a lot of speed, with pauses to make sure my counts are right, and my work looks -- to my novice eye, anyway -- pretty tidy!
Still no word from the wig maker -- can you believe that? -- so it's a good thing I'm learning to knit! I'm thinking I'll be able to knit a cap before the woman allows me to purchase one of her damned wigs! It's really not nice to do that to someone with cancer, you know? Not even to return the two calls is pretty rude. Oh well, I'm sure there's some explanation. I can always go to that original place that's a little more expensive. I know they'll take my money with a couple of day's notice. (Appointments only, like this other elusive woman.) I can only get one wig, though, so I'd really rather get the prettier one, even if it means giving the money to someone who's service I already find disappointing. *sigh* I think I'll just begin to stalk her with guilt-inspiring messages on Monday, give it till Wednesday, and then make an appointment at the other place if I still haven't heard from her. This week I'll have my second treatment, which frequently -- although not always -- prompts the beginning of hair loss, so I'm eager to get something lined up so as not to get caught "in between." Not nice for the self-esteem, you know? My hair is both baby fine and color treated, so I wouldn't bet on it holding out for too long.
And in the meantime, I'm honing my knitting skills, so at least the dome will be a warm one!
Unrelated Sources of Great Excitement
I'm so excited about the snow!! Here in Baltimore we have what seems to be about 6" of snow so far, and it's still coming down! We were out in it all morning, and it was so much fun! I just love the snow. We got Louie (our beloved Italian Greyhound pup-pup son) some gorgeous red snow booties, and he took them out for a spin with us in the virgin snow, all bundled up in his little red all-weather fleece-lined coat and charcoal snood -- I'm telling you he is so completely adorable. The snow was pretty deep for him, but he was a trooper, forging ahead gamely, going as fast as his nimble little legs could carry him in all his bulk.
Today is a big day for me. Today is the day that I will begin to knit. I kid you not. I am joining the legion of women (and men) who are proudly knitting their lame creations all across the land. I got me some needles, some lovely yarn, and this:
How exciting is that?! Besides the Stitch n' Bitch Knitters Handbook, I also got a little book on dishcloths -- I have this strange fascination with handknitted facecloths, and I intend to adapt some of the patterns to that use. Noone who knows me understands where this newfound obsession with learning how to knit originates, but it is a profound and sincerely felt thing. I seriously think it will be a therapeutic and productive activity during the months ahead. I'm not going to be working, as you'll recall, and I will have limited energy stores, so I think it'll give me something to do with my time. It's not expensive (or doesn't have to be, anyway) and if I screw up, it's easy to unravel it and start over -- no harm, no foul. I'm pretty excited.
Another thing that's exciting me is this post by the lovely Ruby, now officially in remission!! (Is it just me, or did you hear a chorus sing a bold note just then too? Eery.) So if you were wondering about what exactly that port sticking out of my chest looks like after they pull it back out, be sure to check that out. Very cool.
I'll check back in to give a detailed and, I'm sure, scintillating report on my first knitting experience....because I'm cruel like that.
Today is a big day for me. Today is the day that I will begin to knit. I kid you not. I am joining the legion of women (and men) who are proudly knitting their lame creations all across the land. I got me some needles, some lovely yarn, and this:
How exciting is that?! Besides the Stitch n' Bitch Knitters Handbook, I also got a little book on dishcloths -- I have this strange fascination with handknitted facecloths, and I intend to adapt some of the patterns to that use. Noone who knows me understands where this newfound obsession with learning how to knit originates, but it is a profound and sincerely felt thing. I seriously think it will be a therapeutic and productive activity during the months ahead. I'm not going to be working, as you'll recall, and I will have limited energy stores, so I think it'll give me something to do with my time. It's not expensive (or doesn't have to be, anyway) and if I screw up, it's easy to unravel it and start over -- no harm, no foul. I'm pretty excited.
Another thing that's exciting me is this post by the lovely Ruby, now officially in remission!! (Is it just me, or did you hear a chorus sing a bold note just then too? Eery.) So if you were wondering about what exactly that port sticking out of my chest looks like after they pull it back out, be sure to check that out. Very cool.
I'll check back in to give a detailed and, I'm sure, scintillating report on my first knitting experience....because I'm cruel like that.
Friday, January 21
Thursday, January 20
It's all good
This is my doctor, Dr. Madhu Chaudhry. She looks nice, doesn't she? She is nice. And she's very pleased with how I handled the first chemo. We met today to see how I did, and to establish our meetings going forward. We will meet at the beginning of each cycle of treatment -- so monthly. Our next visit will be Thursday, March 10, at the beginning of my 3rd cycle, before my 5th chemo treatment.
My friend, Tammy, asked how we'll know if this is working. Good question! 3 months into it, I'll have another PET scan, which will show all the cancerous lymph nodes in my body. We've already established that the cancer had not yet spread to any organs or my bone marrow, so we're good there. It's only the lymph nodes we have to worry about. The PET scan, as you might recall, involves drinking glucose and getting injected with radioactive fluid, and when the glucose gets sucked up by all the active parts -- like hopefully your brain, and most certainly your bladder, and, yeah, all the cancerous parts too -- the radioactive fluid goes with it. So when you look at the scans, there it all is, lit up very plainly. That's how we knew it had spread to the abdomen.
So I'll have the PET scan halfway through the prescribed 6 cycles, and we'll see how we're doing. There's no reason why the chemotherapy won't be effective for me. I should probably begin to feel the lymph nodes in my neck (and that one in my groin) go down after the next treatment or two. Then, in another three months, after I've completed the six cycles, we'll do another PET scan, to see if it's all gone. If it is, then we'll call it a day, and I'll go about the business of recuperating and moving on with my life. If it is not, then we'll talk about other options. Those options will be (A) two more months of chemo, or (B) radiation to the affected areas. Dr. Chaudhry -- and the medical community -- leans towards the former, as do I. Since my diagnosis, I've been preparing myself for the possibility of eight months of chemo, despite the initial recommendation for six months. I'd rather be prepared than disappointed. And at the same time, I'm working on approaching it positively: there's no reason whatsoever that 6 cycles won't do the trick. NONE.
Maureen, you were curious about the cause of the dizziness: it's that damned Bleomycin. Pretty heinous stuff. I forgot to mention here -- I have no idea how -- that I had an earache also, and she says that might have been from the sinus congestion that the DTIC causes. It passed after a couple of days, but it gave me some pain, and I couldn't even put my finger in my left ear for the duration. My pulse was loudly beating in there the whole time, as well. It's just a big old science experiment, isn't it? Fascinating stuff.
So, all in all, she's pleased with my treatment tolerance -- and loves my attitude. And each time we meet her, we like her more. She definitely inspires confidence, and she's human and warm. She makes me feel that she cares about me, and that she's going to care for my health responsibly and calmly.
So that's that. The two loose ends currently are the wig and the disability insurance pay. We're still without these. On the wig front, I'm just waiting for the lady to call me back. I called her two days ago. Then, unbeknownst to me, Lorraine called her today when I was napping, and left her a sweet message telling her I'd started treatment and was eager. What a sweetheart I have, no?
As for the disability pay -- well, there was a delay due to an employee being out for a while at the medical office. She called me with a question over a week ago, and when I called her back her voicemail was full. It remained full during her week home sick, while my paperwork sat. Anyway, today another woman helped me out after I explained the situation to her and expressed my worry, and she was supposed to have sent the paperwork out today. So we'll see. We've gone a while without my getting a full paycheck, so it's a bit scary in these parts. We're going to refinance the house, which should help over the long term, but in the meantime -- I need to start getting some checks -- and soon.
Wednesday, January 19
Popping my head in
Hello, friends! I'm posting to say that there's little to report. I'm fine -- the headache is, amazingly, still present, but somewhat lessened. I still have a mildly groggy feeling sometimes, but it's tolerable. And I've had two tiny waves of dizziness, both of which occurred after quick exertion. (Exertion, that is, relative to sitting absolutely still!)
We go to the oncologist tomorrow, so I'll have to that to discuss afterwards. I'm really so incapacitatingly dull these days, it's a wonder I can sit upright in my own presence. And I'm feeling a tiny bit blue, but I'm not going to elaborate on that right now.
Tomorrow I'll be back with bells on.
We go to the oncologist tomorrow, so I'll have to that to discuss afterwards. I'm really so incapacitatingly dull these days, it's a wonder I can sit upright in my own presence. And I'm feeling a tiny bit blue, but I'm not going to elaborate on that right now.
Tomorrow I'll be back with bells on.
Monday, January 17
Another Post-Chemo Day
Oooh, my aching head! I wish this headache would go away, already. The doc's visit this morning was uneventful; the port's fine, and will be good to go for the next treatment. Upon the great reveal, I was a little surprised to find that the port's protrusion seems to be under the scar, while beneath it, at the insertion point he called "the sweet spot," it sinks in. It's really quite depressed. Fascinating.
After the visit, I had some low-fat fish soup with orange roughy and dill (yum!) and some low-fat crackers and cheese.....and then I just conked out. I had intended to sleep for just a couple of hours, but then slept for four. When I got up, Lorraine was just finishing up some fabulous homemade chicken soup for me, and we had it with a baguette.
This evening I've had the headache, as well as some more bad dizzy spells. As I sit here typing, I'm getting very dizzy again, so I'll close now.
I'll be sure to tell the doc about this stuff on Thursday.
After the visit, I had some low-fat fish soup with orange roughy and dill (yum!) and some low-fat crackers and cheese.....and then I just conked out. I had intended to sleep for just a couple of hours, but then slept for four. When I got up, Lorraine was just finishing up some fabulous homemade chicken soup for me, and we had it with a baguette.
This evening I've had the headache, as well as some more bad dizzy spells. As I sit here typing, I'm getting very dizzy again, so I'll close now.
I'll be sure to tell the doc about this stuff on Thursday.
Sunday, January 16
The Third Day After Chemo #1
It's late and I'm going to turn in, so this will be a quick one. Just wanted to log a quick and dirty documentation how I felt today.
When I woke up at 7:00 to take my A.M. Zofran/Decadron anti-nausea combo, I thought I was going to throw up. Very nauseous. But I just took the pills and went back to sleep, and when I got up later I was fine. More poor energy throughout the day, as per the new normal, and the same nagging headache, but the mouth soreness was greatly reduced, I'm happy to say! Maureen, I'm definitely going to pick up some of that Biotene for the next round. Thanks for the tip! My headache was still present, but not as bad as yesterday. Then this evening, I was making dinner, and got overwhelmed with a mean dizzy spell. I almost passed out while cutting the raw chicken breast with my beautiful Wusthoff chef's knife! Lorraine had just been saying that I'd gotten very red in the face, and then I felt this wave of dizziness. I laid down on the couch, and she took my temperature with our mechanical Timex thermometer (heretofore accurate,) and it went from 97.6 to almost 100, back down to 96.0, and then levelled back off at 98.4. Fascinating! This is the third time that I've noted that my face had gotten flushed, but it was the first major dizzy spell.
Tomorrow I go back to the surgeon to have him remove the bandages from my port, check it out, and talk to me about my stitches. Then on Thursday, I meet with my oncologist to talk to her about how I did during and after my first chemo. Interesting stuff! My Tuesday appt. to check out wigs at the American Cancer Society needed to be rescheduled because of the volunteer's upcoming jury duty, and I'm actually happy about it. Tomorrow, I will be calling that highly lauded wig-maker recommended to me twice at the Cancer Center, and I will surely go with one of her apparently impressive creations. I might have mentioned this before, but I think it bears repeating: My insurance covers $350 of the cost of a "hair prosthesis," so I'm very grateful for this. My doc wrote me out a prescription for one, and, upon presenting it to the wig source, my wig's cost will be reduced by that amount, and they'll bill my insurance directly. Pretty cool, isn't it? This marks a happy insurance moment. I'm entering into this positively, so I'm going to expect more of those throughout this experience.....keep your fingers crossed for me. I WILL say that my PET scan was over $4,000, and my share of the cost is around $600.00 -- so that's pretty impressive. (Not that we have the $600 -- they'll be getting baby payments for years to come, but eventually it will be paid.)
Thanks to those of you who encouraged me not to sweat my eats -- I think I might lighten up on myself a bit after all. Not in terms of my goals, but in terms of getting down on myself if I eat something "off plan." And Denise, I am most definitely going to get back on the exercise wagon this week, beginning tomorrow. My energy has been so lousy, but I know it would really help with that if I could manage to get myself going. I'm sure I'll feel better tomorrow.
The plan for tomorrow is to color my hair first thing in the morning (they recommend against this because it further weakens your hair during chemo -- but really, what's it going to do? Make it fall out?? I have ROOTS, damn it, and they simply must go!) Then it's on to a healthy breakfast before my 10:15 surgeon's appt., then another healthy something to eat once I get home. Then it will be exercise time. Probably cycling. I'd like to get in at least 45 minutes steady rate, but I'll see how it goes.
When I woke up at 7:00 to take my A.M. Zofran/Decadron anti-nausea combo, I thought I was going to throw up. Very nauseous. But I just took the pills and went back to sleep, and when I got up later I was fine. More poor energy throughout the day, as per the new normal, and the same nagging headache, but the mouth soreness was greatly reduced, I'm happy to say! Maureen, I'm definitely going to pick up some of that Biotene for the next round. Thanks for the tip! My headache was still present, but not as bad as yesterday. Then this evening, I was making dinner, and got overwhelmed with a mean dizzy spell. I almost passed out while cutting the raw chicken breast with my beautiful Wusthoff chef's knife! Lorraine had just been saying that I'd gotten very red in the face, and then I felt this wave of dizziness. I laid down on the couch, and she took my temperature with our mechanical Timex thermometer (heretofore accurate,) and it went from 97.6 to almost 100, back down to 96.0, and then levelled back off at 98.4. Fascinating! This is the third time that I've noted that my face had gotten flushed, but it was the first major dizzy spell.
Tomorrow I go back to the surgeon to have him remove the bandages from my port, check it out, and talk to me about my stitches. Then on Thursday, I meet with my oncologist to talk to her about how I did during and after my first chemo. Interesting stuff! My Tuesday appt. to check out wigs at the American Cancer Society needed to be rescheduled because of the volunteer's upcoming jury duty, and I'm actually happy about it. Tomorrow, I will be calling that highly lauded wig-maker recommended to me twice at the Cancer Center, and I will surely go with one of her apparently impressive creations. I might have mentioned this before, but I think it bears repeating: My insurance covers $350 of the cost of a "hair prosthesis," so I'm very grateful for this. My doc wrote me out a prescription for one, and, upon presenting it to the wig source, my wig's cost will be reduced by that amount, and they'll bill my insurance directly. Pretty cool, isn't it? This marks a happy insurance moment. I'm entering into this positively, so I'm going to expect more of those throughout this experience.....keep your fingers crossed for me. I WILL say that my PET scan was over $4,000, and my share of the cost is around $600.00 -- so that's pretty impressive. (Not that we have the $600 -- they'll be getting baby payments for years to come, but eventually it will be paid.)
Thanks to those of you who encouraged me not to sweat my eats -- I think I might lighten up on myself a bit after all. Not in terms of my goals, but in terms of getting down on myself if I eat something "off plan." And Denise, I am most definitely going to get back on the exercise wagon this week, beginning tomorrow. My energy has been so lousy, but I know it would really help with that if I could manage to get myself going. I'm sure I'll feel better tomorrow.
The plan for tomorrow is to color my hair first thing in the morning (they recommend against this because it further weakens your hair during chemo -- but really, what's it going to do? Make it fall out?? I have ROOTS, damn it, and they simply must go!) Then it's on to a healthy breakfast before my 10:15 surgeon's appt., then another healthy something to eat once I get home. Then it will be exercise time. Probably cycling. I'd like to get in at least 45 minutes steady rate, but I'll see how it goes.
Saturday, January 15
The Second Day After Chemo #1
Hello, all. Ok, so chemo was Thursday, and now I'm two days past that. I'm plugging along. The good news: Still no nausea. Yay! The bad news: I'm rating a zilch on the energy-meter....total fatigue. Persistent headache literally all day. Mouth soreness affecting tongue, gums, and top of mouth. The mouth is dry, as is my skin. I'm a bit achy. I'm experiencing a little tingling in the fingers of my right hand. And I'm still fuzzy. Ah, and I'm a bit cranky, too! None of this is debilitating -- well, the energy thing is pretty bad. But really, it's not unlike having the flu. So, overall, manageable. In hindsight, I think maybe I'd have been better off not skipping the nap today.
I'm drinking lots of fluid to try to flush out the chemo so it's not hanging on. I only got in about 100-120 oz. of water yesterday, but today I'm closer to 120-140. I'm on so many medicines currently, it's crazy! Aside from the Adriamycin, Bleomycin, Vinblastine and Dacarbazine, I'm also on Zofran, Decadron (steroid,) Allegra, Prevacid, and Zoloft. During the course of the night, I'll take two Hydroxyzine (Atarax) for itching -- it makes me sleepy. I also have some generic Compazine at the ready in case the Zofran and Decadron need some additional nausea-fighting support. I haven't yet needed that. I didn't take my Zofran and Decadron this evening -- the time got away from me, and I didn't want to take it too late, as the steroid has a bit of an upper effect. So I'm weighing whether or not to take it early tomorrow morning (the usual A.M. dose) or just forgo it, as the time for nausea may have passed. I'm not sure. I think I might have read that some folks get hit with nausea on the third day after chemo. Maybe I'll take it tomorrow, too, just to be sure.
I slept VERY late today -- almost 11:30. Now, I was up till 1:00 a.m. last night (hence, today's decision to skip the nap,) so that gives me a 10 1/2 hour night's sleep.
Eats for today:
Brunch: 1/2 cup All Bran Extra Fiber and 1/2 cup Kashi Go Lean with skim milk; protein drink with water
Snack: 1 jalapeno cheddar bagel with light plain cream cheese
Snack: Like 10 cheese puffs, and a sugar free popsicle (to prevent mouth sores)
Snack: 1 cup Kraft Macaroni and Cheese (made with skim milk and just a little Smart Balance spread and a fat free American cheese slice for the whole box)
Dinner: Finally, back to healthy food! 2/3 cup low fat, homemade lentil and kale soup; 1 1/2 cups of that yummy low fat Chicken and Wild Rice with Orange Marmalade and Rosemary (also Dijon mustard, in case you're interested in reproducing it;) and another big salad plate of mixed greens and baby spinach with cucumbers and roma tomatoes, with low fat balsamic vinaigrette.
After Dinner: Mint Chocolate Chip ice cream. I know, I know.
Like I said, about 120-140 oz. water for the day, too.....I'm still drinking though, so that could go up.
Not the best day, eats-wise. I pretty much went off on those snackies in the afternoon! Ah well, tomorrow's another day. I know I was aware of my mouth feeling better with stuff in it (that mac and cheese felt good,) but I think the real culprit might have been that Decadron.....damned steroids! I'm very grateful that my chemo regimen doesn't include big doses of steroids, and I don't want to seem ungrateful for the Decadron's anti-nausea benefits, but it does make you want to eat more!
Once I have more energy, I'll up the exercise, and cut back on the eats to make up for these little splurges. I shouldn't even have them in the house, but...well, it's a long story, involving jokes and loving gestures....and so, for now, I have a couple of off-plan goodies. I'm not going to throw them away. I won't! To be honest, it's really just the Cheese Doodles left. And that regular sized bag won't last long, between the two of us. The full-fat ice cream is gone, as of tonight's enjoyment.
Now let me be clear: My primary motivation is not to lose weight now -- although a few pounds over a few weeks would be most welcome! My overriding goal is -- and I've said this before -- to KICK CANCER'S ASS. And I am clear that I need to keep my caloric level at a rate high enough to keep me strong and fight-ready. I'm going to continue to emphasize high quality, nutritious calories, though. Just as soon as I finish those Cheese Doodles!
I want to thank you all again for all of your humbling support. You feed me and keep me strong, and I thank you from the bottom of my heart. You are each amazing to me, and I'm so grateful for you.
Here's to tomorrow! Before chemo, my energy was at about 75%; I'd like to get back to that before too long.
I'm drinking lots of fluid to try to flush out the chemo so it's not hanging on. I only got in about 100-120 oz. of water yesterday, but today I'm closer to 120-140. I'm on so many medicines currently, it's crazy! Aside from the Adriamycin, Bleomycin, Vinblastine and Dacarbazine, I'm also on Zofran, Decadron (steroid,) Allegra, Prevacid, and Zoloft. During the course of the night, I'll take two Hydroxyzine (Atarax) for itching -- it makes me sleepy. I also have some generic Compazine at the ready in case the Zofran and Decadron need some additional nausea-fighting support. I haven't yet needed that. I didn't take my Zofran and Decadron this evening -- the time got away from me, and I didn't want to take it too late, as the steroid has a bit of an upper effect. So I'm weighing whether or not to take it early tomorrow morning (the usual A.M. dose) or just forgo it, as the time for nausea may have passed. I'm not sure. I think I might have read that some folks get hit with nausea on the third day after chemo. Maybe I'll take it tomorrow, too, just to be sure.
I slept VERY late today -- almost 11:30. Now, I was up till 1:00 a.m. last night (hence, today's decision to skip the nap,) so that gives me a 10 1/2 hour night's sleep.
Eats for today:
Brunch: 1/2 cup All Bran Extra Fiber and 1/2 cup Kashi Go Lean with skim milk; protein drink with water
Snack: 1 jalapeno cheddar bagel with light plain cream cheese
Snack: Like 10 cheese puffs, and a sugar free popsicle (to prevent mouth sores)
Snack: 1 cup Kraft Macaroni and Cheese (made with skim milk and just a little Smart Balance spread and a fat free American cheese slice for the whole box)
Dinner: Finally, back to healthy food! 2/3 cup low fat, homemade lentil and kale soup; 1 1/2 cups of that yummy low fat Chicken and Wild Rice with Orange Marmalade and Rosemary (also Dijon mustard, in case you're interested in reproducing it;) and another big salad plate of mixed greens and baby spinach with cucumbers and roma tomatoes, with low fat balsamic vinaigrette.
After Dinner: Mint Chocolate Chip ice cream. I know, I know.
Like I said, about 120-140 oz. water for the day, too.....I'm still drinking though, so that could go up.
Not the best day, eats-wise. I pretty much went off on those snackies in the afternoon! Ah well, tomorrow's another day. I know I was aware of my mouth feeling better with stuff in it (that mac and cheese felt good,) but I think the real culprit might have been that Decadron.....damned steroids! I'm very grateful that my chemo regimen doesn't include big doses of steroids, and I don't want to seem ungrateful for the Decadron's anti-nausea benefits, but it does make you want to eat more!
Once I have more energy, I'll up the exercise, and cut back on the eats to make up for these little splurges. I shouldn't even have them in the house, but...well, it's a long story, involving jokes and loving gestures....and so, for now, I have a couple of off-plan goodies. I'm not going to throw them away. I won't! To be honest, it's really just the Cheese Doodles left. And that regular sized bag won't last long, between the two of us. The full-fat ice cream is gone, as of tonight's enjoyment.
Now let me be clear: My primary motivation is not to lose weight now -- although a few pounds over a few weeks would be most welcome! My overriding goal is -- and I've said this before -- to KICK CANCER'S ASS. And I am clear that I need to keep my caloric level at a rate high enough to keep me strong and fight-ready. I'm going to continue to emphasize high quality, nutritious calories, though. Just as soon as I finish those Cheese Doodles!
I want to thank you all again for all of your humbling support. You feed me and keep me strong, and I thank you from the bottom of my heart. You are each amazing to me, and I'm so grateful for you.
Here's to tomorrow! Before chemo, my energy was at about 75%; I'd like to get back to that before too long.
Friday, January 14
The Day After Chemo #1
Hey, everyone! Today was a little worse than yesterday, but still nothing major. I had more of the mouth thing, and at midday had a sort of fuzzy-headed, woozy feeling -- sort of like being on cold medicine.
Last night I took the anti-itch prescription medicine before bed and then in the middle of the night, so it really conked me out and allowed both Lorraine and me to have a solid, great, full night's sleep. She loved it more than I can describe. I remember lying there, and, for the first time since July, being aware of just being completely, effortlessly still. It was amazing. It also made me sleepy, so that was good in terms of counteracting the energizing effects of the anti-nausea steroid, Decadron.
Early this morning, around 7:00, I took my A.M. dose of Zofran and Decadron. It's a preemptive strike against the onset of nausea. They say that it's a lot easier to prevent it than to react to it after the fact.
When I got up this morning at 9:30 (after 10 hours' sleep,) I had a 1/2 cup of All Bran Extra Fiber and 1/2 cup of Kashi Go Lean with skim milk, followed by a smoothie of ice (to help prevent mouth sores,) frozen blueberries, orange juice, a half a banana, and banana protein powder (23g protein, 0g carb, 0g sugar, 0g sodium -- it's excellent quality, and I get it from an excellent site The Protein Factory.) Following these were 40 oz. Raspberry Ice Crystal Light. Yum!
I did some cleaning and helped Patricia with cooking a bit, and then around 1:00, I had about a cup of wild rice with about 4 oz. of orange marmalade and rosemary chicken (with chopped onions and carrots.) It was a Weight Watchers recipe, and it was wonderful!
After about an hour, I started to feel really tired and pretty fuzzy. I was having a little difficulty focusing. Patricia was urging me to take a nap, so I acquiesed, and ended up snoozing for a few hours! When I woke up, Lorraine was home from work, and she gave me my P.M. dose of Zofran and Decadron.
Dinner was some roasted chicken breast (no skin,) some noodles with feta, olive oil, lemon juice, garlic, and mint, and a heaping salad plate of spinach, romaine, radicchio, arugula, ripe roma tomatoes, and cucumbers -- with a lowfat balsamic vinaigrette. I also had a glass of red wine (I won't do a lot of that, but I did enjoy a treat,) and drank 40 oz. water. (For those of you aware of my prior drinking, I haven't written about it here, but over the holiday season I had a few glasses of wine over several occasions, and there was no issue at all.)
After dinner, I baked some ready-made chocolate chip cookies, and ate two! Life is so good for me!
I'll finish another 20 oz. water before bed, and I've already taken my anti-itch medicine, so it should help our sleep once again. Lorraine was so grateful. It makes me feel really badly for all the disturbance my incessant itching has caused. All these months -- all the months pre-diagnosis -- and here it this major classic Hodgkins symptom.
All in all, a pretty humdrum day. I'm looking forward to learning what tomorrow has to bring. We all react differently, and I'm in the process of learning how my body will respond to these treatments. I know that these medicines have a cumulative effect, and that it's going to get harder.....but so far this it's nice to ease into this routine!
Last night I took the anti-itch prescription medicine before bed and then in the middle of the night, so it really conked me out and allowed both Lorraine and me to have a solid, great, full night's sleep. She loved it more than I can describe. I remember lying there, and, for the first time since July, being aware of just being completely, effortlessly still. It was amazing. It also made me sleepy, so that was good in terms of counteracting the energizing effects of the anti-nausea steroid, Decadron.
Early this morning, around 7:00, I took my A.M. dose of Zofran and Decadron. It's a preemptive strike against the onset of nausea. They say that it's a lot easier to prevent it than to react to it after the fact.
When I got up this morning at 9:30 (after 10 hours' sleep,) I had a 1/2 cup of All Bran Extra Fiber and 1/2 cup of Kashi Go Lean with skim milk, followed by a smoothie of ice (to help prevent mouth sores,) frozen blueberries, orange juice, a half a banana, and banana protein powder (23g protein, 0g carb, 0g sugar, 0g sodium -- it's excellent quality, and I get it from an excellent site The Protein Factory.) Following these were 40 oz. Raspberry Ice Crystal Light. Yum!
I did some cleaning and helped Patricia with cooking a bit, and then around 1:00, I had about a cup of wild rice with about 4 oz. of orange marmalade and rosemary chicken (with chopped onions and carrots.) It was a Weight Watchers recipe, and it was wonderful!
After about an hour, I started to feel really tired and pretty fuzzy. I was having a little difficulty focusing. Patricia was urging me to take a nap, so I acquiesed, and ended up snoozing for a few hours! When I woke up, Lorraine was home from work, and she gave me my P.M. dose of Zofran and Decadron.
Dinner was some roasted chicken breast (no skin,) some noodles with feta, olive oil, lemon juice, garlic, and mint, and a heaping salad plate of spinach, romaine, radicchio, arugula, ripe roma tomatoes, and cucumbers -- with a lowfat balsamic vinaigrette. I also had a glass of red wine (I won't do a lot of that, but I did enjoy a treat,) and drank 40 oz. water. (For those of you aware of my prior drinking, I haven't written about it here, but over the holiday season I had a few glasses of wine over several occasions, and there was no issue at all.)
After dinner, I baked some ready-made chocolate chip cookies, and ate two! Life is so good for me!
I'll finish another 20 oz. water before bed, and I've already taken my anti-itch medicine, so it should help our sleep once again. Lorraine was so grateful. It makes me feel really badly for all the disturbance my incessant itching has caused. All these months -- all the months pre-diagnosis -- and here it this major classic Hodgkins symptom.
All in all, a pretty humdrum day. I'm looking forward to learning what tomorrow has to bring. We all react differently, and I'm in the process of learning how my body will respond to these treatments. I know that these medicines have a cumulative effect, and that it's going to get harder.....but so far this it's nice to ease into this routine!
Thursday, January 13
CHEMO # 1 - 1 Down, 11 to Go!
Alright so my first chemo is under my belt! It went off relatively painlessly; I'd been experiencing some pain from the needle/IV hook-up, and so after it was used for the treatment, they removed it, so that's MUCH better now. I still have some swelling and soreness from the port implantation, but overall, it's just fine. I return to the surgeon on Monday to have him checked out, and we also scheduled the next chemo treatment, so here are the new appointments:
Monday, Jan. 17th, 10:15 a.m.: Get surgeon to check up and sign off on my port.
Thursday, Jan. 27th, 8:45 a.m.: Second chemo treatment. I'll arrive at two down, ten to go!
The treatment took around six hours. First they gave me Saline, followed by Zofran and Decadron (low dose steroid) for nausea. Then they gave me (via drip) a test dose of Bleomycin, the "B" in the ABVD regimen, known to cause permanent lung damage and ellicit an allergic reaction in some patients. Then I had to sit for an hour with a Saline drip while they monitored me. I was fine, apart from a feeling of internal coldness, so we moved forward with the Adriomycin (red -- makes your pee pee red) and pushed manually through the port's IV rather than through an IV drip. Following that was another manual push of the Vinblastine -- again, uneventful. We then went on to a full dosage drip of Bleomycin, which then needed to be monitored once again (with the requisite saline drip) for an allergic reaction. Again, I felt cold, but no biggie, so we moved on. Finally, I had the DITC, or Dacarbazine, by drip, and then the medicine was done! Cathy, my new favorite nurse, removed the needle and redressed my bandage.....and then sent me on my way!
How did I feel? Well, at some point during treatment, I felt some gastrointestinal nastiness, and then afterwards, I was really, really tired. Just whipped. I felt very weak and, after taking Gas-X, went right to sleep, sleeping for several hours. When I woke up, I was woozy and had trouble focusing, but got up, took some more Gax-X, and sat relatively quietly while Lorraine and her sister waited on me hand and foot. While I was asleep, Patricia made me several dishes for both freezing and eating over the next couple of days, and they let me up to make one of my famous salads and some pasta to go with our roasted chicken and, for me, spinach. Yum! I enjoyed all of it, and was able to taste things just fine when I ate them. Without food in my mouth, I have an odd taste -- it's like a combination of metal and nasty sleep-mouth, although I've brushed my teeth several times today.
According to the oncology nurse, the anti-nausea drugs she gave me during treatment are sufficient for the day. So now I have the Zofran and generic Decadron at the ready for my normal early morning trot to the bathroom. That way it will be in my system prior to waking up for the day. Based on the experiences of others, I expect my side effects to hit tomorrow. I don't expect horrible things, but if it gets rough, I have drugs and plenty of time to sleep it off, right?
Thanks you all so much for all of your amazing support -- I get so excited when you comment, and I read and reread what you say, thinking about your advice and getting nourished by your feedback and kindness. I just think you're all so wonderfully, wonderfully wonderful!!
I'll update again tomorrow.
Monday, Jan. 17th, 10:15 a.m.: Get surgeon to check up and sign off on my port.
Thursday, Jan. 27th, 8:45 a.m.: Second chemo treatment. I'll arrive at two down, ten to go!
The treatment took around six hours. First they gave me Saline, followed by Zofran and Decadron (low dose steroid) for nausea. Then they gave me (via drip) a test dose of Bleomycin, the "B" in the ABVD regimen, known to cause permanent lung damage and ellicit an allergic reaction in some patients. Then I had to sit for an hour with a Saline drip while they monitored me. I was fine, apart from a feeling of internal coldness, so we moved forward with the Adriomycin (red -- makes your pee pee red) and pushed manually through the port's IV rather than through an IV drip. Following that was another manual push of the Vinblastine -- again, uneventful. We then went on to a full dosage drip of Bleomycin, which then needed to be monitored once again (with the requisite saline drip) for an allergic reaction. Again, I felt cold, but no biggie, so we moved on. Finally, I had the DITC, or Dacarbazine, by drip, and then the medicine was done! Cathy, my new favorite nurse, removed the needle and redressed my bandage.....and then sent me on my way!
How did I feel? Well, at some point during treatment, I felt some gastrointestinal nastiness, and then afterwards, I was really, really tired. Just whipped. I felt very weak and, after taking Gas-X, went right to sleep, sleeping for several hours. When I woke up, I was woozy and had trouble focusing, but got up, took some more Gax-X, and sat relatively quietly while Lorraine and her sister waited on me hand and foot. While I was asleep, Patricia made me several dishes for both freezing and eating over the next couple of days, and they let me up to make one of my famous salads and some pasta to go with our roasted chicken and, for me, spinach. Yum! I enjoyed all of it, and was able to taste things just fine when I ate them. Without food in my mouth, I have an odd taste -- it's like a combination of metal and nasty sleep-mouth, although I've brushed my teeth several times today.
According to the oncology nurse, the anti-nausea drugs she gave me during treatment are sufficient for the day. So now I have the Zofran and generic Decadron at the ready for my normal early morning trot to the bathroom. That way it will be in my system prior to waking up for the day. Based on the experiences of others, I expect my side effects to hit tomorrow. I don't expect horrible things, but if it gets rough, I have drugs and plenty of time to sleep it off, right?
Thanks you all so much for all of your amazing support -- I get so excited when you comment, and I read and reread what you say, thinking about your advice and getting nourished by your feedback and kindness. I just think you're all so wonderfully, wonderfully wonderful!!
I'll update again tomorrow.
Wednesday, January 12
It's not in the bone marrow!
Woo hoo!! Great news: the cancer is NOT in my bone marrow!! So I'm officially Stage IIIB! Your perspective sure changes in this thing doesn't it? LOL III B isn't a walk in the park, but it sure beats the heck out of IV B, no? My doc was very pleased, and gave me several prescriptions for tomorrow's chemo. I also got the name and number of a woman who makes wigs for the Orthodox Jewish community's women, and apparently her wigs are stunning -- and she takes insurance! -- so I'm going to give her a call today to set up an appointment as soon as she can take me.
The port is still pretty sore, and there's some blood. I think the weight of the stuff hanging from the needle is what's hurting me, so after my treatment tomorrow, when the nurse removes this stuff, it'll be much better. One of my prescriptions is for Emla Cream, a freezing cream that you put on the port site before it gets stuck so you don't even feel it. Yay!
Lorraine's sister Patricia is coming to stay with us for a few days. She has kids and is just about to go through a divorce, so she wants to help out while she can. She's coming to chemo with us, and then afterwards she's going to cook some meals to freeze, and help us clean. She wants to try to give Lorraine and me a break from that stuff while she's still free to get down here from Jersey for a spell -- it will be harder for her later on. Pretty darned nice of her, huh? I have no idea how I'm going to react to the chemo this first time; I wouldn't imagine it would be any great shakes at this point. I may feel nauseous for a couple of days, but I'm sure it won't be anything debilitating! Anyway, she wants to help, and it will give Lorraine comfort to have her here -- and it will help us to build upon our budding friendship.
The port is still pretty sore, and there's some blood. I think the weight of the stuff hanging from the needle is what's hurting me, so after my treatment tomorrow, when the nurse removes this stuff, it'll be much better. One of my prescriptions is for Emla Cream, a freezing cream that you put on the port site before it gets stuck so you don't even feel it. Yay!
Lorraine's sister Patricia is coming to stay with us for a few days. She has kids and is just about to go through a divorce, so she wants to help out while she can. She's coming to chemo with us, and then afterwards she's going to cook some meals to freeze, and help us clean. She wants to try to give Lorraine and me a break from that stuff while she's still free to get down here from Jersey for a spell -- it will be harder for her later on. Pretty darned nice of her, huh? I have no idea how I'm going to react to the chemo this first time; I wouldn't imagine it would be any great shakes at this point. I may feel nauseous for a couple of days, but I'm sure it won't be anything debilitating! Anyway, she wants to help, and it will give Lorraine comfort to have her here -- and it will help us to build upon our budding friendship.
Tuesday, January 11
Sarah Has a Port
The port is in, and I'm fairly wasted as I write this. I took an Oxycodone -- a painkiller that apparently can be enjoyed as a heroin substitute when chewed. Fascinating. For the record, I didn't chew it; I swallowed it whole with some Raspberry Ice Crystal Light. And it's got me all kerflewy. I hate that.
So here's the skinny on the port: They did it under a "twilight" anesthesia, and the experience was pretty surreal. My memories of it fade in and out, and I felt like I was there and not there. I know that I kept thanking everyone for their kindness, probably repeating myself to at least one. Because chemo starts Thursday, my surgeon opted to leave an IV access thingy hooked up externally, so they're not poking me until the second treatment. So I have the port inside, and this whole IV apparatus outside and covered with waterproof tape. It's a needle inserted in the port, attached to a plastic tube which has a cap -- so it's all ready for chemo hook-up. The whole thing hurts; hence, the painkiller. I hate taking them, because they always mess with your head. Why can't I have one that just kills the pain and leaves you clear-headed? I keep getting dizzy and woozy. Anyway, I'll get the chemo through that external thing this Thursday, and then next week I'll return to the surgeon to have him remove the needle and the rest of the external stuff -- then I'll have just skin, with the port beneath.
Tomorrow morning we meet with the oncologist for a pre-chemo talk. I will find out the results of my bone marrow biopsy (it's killing me not knowing) and also get some prescriptions for chemo preparedness.
Today was a tough day, emotionally. I broke down a little with Lorraine in pre-op, and then in the operating room I started to cry again. I felt just overwhelmed by all of this, in one of those "I can't believe this is happening" moments. I pulled myself together quickly before anyone could see (I hope) and then just prayed for faith and strength.
This painkiller is really getting to me -- my eyes are rolling in my head! Sadly, no interesting visions or hallucinations....just your garden variety dizziness. So it's night-night for this girl. It's been a long, hard day, and I'm looking forward to tomorrow.
So here's the skinny on the port: They did it under a "twilight" anesthesia, and the experience was pretty surreal. My memories of it fade in and out, and I felt like I was there and not there. I know that I kept thanking everyone for their kindness, probably repeating myself to at least one. Because chemo starts Thursday, my surgeon opted to leave an IV access thingy hooked up externally, so they're not poking me until the second treatment. So I have the port inside, and this whole IV apparatus outside and covered with waterproof tape. It's a needle inserted in the port, attached to a plastic tube which has a cap -- so it's all ready for chemo hook-up. The whole thing hurts; hence, the painkiller. I hate taking them, because they always mess with your head. Why can't I have one that just kills the pain and leaves you clear-headed? I keep getting dizzy and woozy. Anyway, I'll get the chemo through that external thing this Thursday, and then next week I'll return to the surgeon to have him remove the needle and the rest of the external stuff -- then I'll have just skin, with the port beneath.
Tomorrow morning we meet with the oncologist for a pre-chemo talk. I will find out the results of my bone marrow biopsy (it's killing me not knowing) and also get some prescriptions for chemo preparedness.
Today was a tough day, emotionally. I broke down a little with Lorraine in pre-op, and then in the operating room I started to cry again. I felt just overwhelmed by all of this, in one of those "I can't believe this is happening" moments. I pulled myself together quickly before anyone could see (I hope) and then just prayed for faith and strength.
This painkiller is really getting to me -- my eyes are rolling in my head! Sadly, no interesting visions or hallucinations....just your garden variety dizziness. So it's night-night for this girl. It's been a long, hard day, and I'm looking forward to tomorrow.
Monday, January 10
The port goes in tomorrow.
My GP is such a lovely man. I had my pre-op physical today, in preparation for my port operation tomorrow morning, and he was so warm and caring -- he just feels really badly for me. He even gave me his home number to use if I ever need anything or just want to talk. He's a good man.
I'm a little nervous about the port implantation procedure tomorrow. Not drastically so, but any surgery is a little stressful. It won't be a long one -- an hour for pre-op, an hour for the surgery, and then post-op recovery should be another hour or so. So like three hours to get in and out. The oncology nurse said that it's usually pretty sore at first, and I may feel some discomfort for anywhere from a few days to a couple of weeks afterwards.
Maureen described perfectly the conflicting emotions you have surrounding the presence of cancer in your body. I urge you to read her discussion of cancer's alien presence. She spoke for me, and reading it I kept nodding, thinking "Yes, that's it exactly!"
Pre-op's at 6:30 in the morning, with the surgery at 7:30. I'll be sure to share an update at some point afterwards. Think a kind thought if you're awake!
I'm a little nervous about the port implantation procedure tomorrow. Not drastically so, but any surgery is a little stressful. It won't be a long one -- an hour for pre-op, an hour for the surgery, and then post-op recovery should be another hour or so. So like three hours to get in and out. The oncology nurse said that it's usually pretty sore at first, and I may feel some discomfort for anywhere from a few days to a couple of weeks afterwards.
Maureen described perfectly the conflicting emotions you have surrounding the presence of cancer in your body. I urge you to read her discussion of cancer's alien presence. She spoke for me, and reading it I kept nodding, thinking "Yes, that's it exactly!"
Pre-op's at 6:30 in the morning, with the surgery at 7:30. I'll be sure to share an update at some point afterwards. Think a kind thought if you're awake!
Sunday, January 9
Radiation No Extra Help in Hodgkins Disease
I'm on a Hodgkins mailing list, and someone provided a link to MedScape, where I viewed this interesting article. It discusses the efficacy of radiation's use in non-bulky Hodgkins patients, stages I - IIIA. (The "A" designation refers to the absence of symptoms, or Asymptomatic, whereas "B" reflects the presence of Hodgkins symptoms, like night sweats, low-grade fever, and unexplained weight loss -- and, secondarily, itching.) Now, I'm IIIB (and non-bulky) currently, assuming my bone marrow results come back negative -- if they're positive, I'll be IVB, which is pretty much as bad as it gets. I'd be interested in hearing how these results apply to those of us who were symptomatic -- like in my case, the IIIB's. Anyway, it's interesting, and encouraging. When the tumors group to form a mass, then you are considered "bulky;" if the tumors are dispersed throughout your body, you are "non-bulky." Therefore, because there's no main area upon which to focus radiation, those of us with advanced, non-bulky Hodgkins have typically been considered to have a greater likelihood of having Hodgkins return at some point, because the option of radiation's "kill 'em dead" power was not available to us. Therefore, hearing that the radiation doesn't impact your prognosis significantly is pretty great news! Not sure to what degree it applies to me, though, since I dwell in the land of the "B's."
Anyway, here's the article, taken from Medscape.com:
Anyway, here's the article, taken from Medscape.com:
Radiation No Extra Help in Hodgkin's Disease
By David Douglas
NEW YORK (Reuters Health) Dec 30 - Adding radiotherapy to chemotherapy appears to offer no additional benefits in treatment of certain patients with Hodgkin's disease, researchers report in the December 1st issue of Blood.
In fact, lead investigator Dr. David J. Straus told Reuters Health "our study found no difference in outcome between patients with non-bulky stages I, II and IIIA Hodgkin's lymphoma treated with chemotherapy and radiation therapy and those treated with chemotherapy alone."
In particular, Dr. Straus, of Memorial Sloan-Kettering Cancer Center, New York and colleagues compared outcomes in 152 such patients. They were randomized to 6 cycles of doxorubicin, bleomycin, vinblastine and dacarbazine with or without radiotherapy.
Complete remission was seen in 94% of the combination group and 6% showed no major response. With chemotherapy alone, 94% showed complete remission, 1.5% had a partial response and the remaining 4.5% had no response.
Moreover, at 5 years, there were still no significant differences in outcome.
"In view of the long-term toxicities associated with radiation therapy," Dr. Straus said, "this finding has implications for the care of these patients."
He added that "a national trial employing chemotherapy only for similar patients is in progress."
In an accompanying editorial, Dr. Dan L. Longo of the National Institute on Aging, Bethesda, Maryland points out that in the absence of persuasive data on the efficacy of the combined modality, use of chemotherapy alone "removes the imminent threat posed by radiation exposure for the majority of patients."
Blood 2004;104:3483-3489,3418.
Saturday, January 8
Saturday
A thorough teeth-cleaning is recommended prior to starting chemo, so I got that out of the way today. I always find it an altogether unpleasant experience, but it's done, anyway.
I found the lump in my groin last night. It's one of two, apparently, and for some unknown reason I felt compelled to go rooting around for it last night around 3:00 a.m. I was up most of the night dealing with night sweats and scratching unsatisfiable itches all over my body (both of them classic Hodgkins symptoms) and was of course disturbing Lorraine's sleep. Something made me feel like I needed to find it and feel it -- when before I'd not had the slightest curiosity about it. When I found it, I felt so.....I don't know. Just upset and worried, and like I'm a stranger in my own body. WTF is going on inside of me? It just felt so real and tangible, in a way that the ones in my neck didn't, inexplicably. My cells are dividing and growing in abnormal ways, and then sustaining rather than dying. And there was proof positive, manifested in a palpable way in a place I've never felt anything swollen before. Of course when Lorraine woke up I had her feel it and, half-asleep, she was disturbed and a little wigged out. I told her that I wanted her to feel it now so she could fully enjoy it's disappearance after the chemo -- but really she was fairly skeeved.
I just can't believe my body is full of them. Check your nearest ruler, and look for the 4 centimeter mark -- that's the size of my average affected lymph node. (Normally the size of a pea, I understand.) I'm feeling anxious today; I'm both ready to start and dreading Tuesday's port implantation. I'm very clear on the wisdom of going that route -- I just don't like it's necessity, and I won't like the additional scar. I hope he puts it low enough that it won't be apparent with strapless or low-cut tops. I'm a dyke of the most girly persuasion.....so I do enjoy showing off the assets on occasion.
Tomorrow I go in to clean out my cube (didn't get to that today) and then we take down the Christmas tree. Then it's a pre-op physical on Monday, the port implantation surgery on Tuesday, visit with the oncologist on Wednesday, and Chemo #1 on Thursday. And at some point on Wednesday I'm going to stock up on both frozen and fresh veggies and fruits, oatmeal, brown rice and oatmeal and kidney beans, and chicken breast and fish.
My exercise goal going forward is to walk or bike at least 3 times week throughout treatment, for as long as I'm able.
Between the nutrition, exercise, meditation and chemo -- this stupid cancer doesn't stand a chance.
I found the lump in my groin last night. It's one of two, apparently, and for some unknown reason I felt compelled to go rooting around for it last night around 3:00 a.m. I was up most of the night dealing with night sweats and scratching unsatisfiable itches all over my body (both of them classic Hodgkins symptoms) and was of course disturbing Lorraine's sleep. Something made me feel like I needed to find it and feel it -- when before I'd not had the slightest curiosity about it. When I found it, I felt so.....I don't know. Just upset and worried, and like I'm a stranger in my own body. WTF is going on inside of me? It just felt so real and tangible, in a way that the ones in my neck didn't, inexplicably. My cells are dividing and growing in abnormal ways, and then sustaining rather than dying. And there was proof positive, manifested in a palpable way in a place I've never felt anything swollen before. Of course when Lorraine woke up I had her feel it and, half-asleep, she was disturbed and a little wigged out. I told her that I wanted her to feel it now so she could fully enjoy it's disappearance after the chemo -- but really she was fairly skeeved.
I just can't believe my body is full of them. Check your nearest ruler, and look for the 4 centimeter mark -- that's the size of my average affected lymph node. (Normally the size of a pea, I understand.) I'm feeling anxious today; I'm both ready to start and dreading Tuesday's port implantation. I'm very clear on the wisdom of going that route -- I just don't like it's necessity, and I won't like the additional scar. I hope he puts it low enough that it won't be apparent with strapless or low-cut tops. I'm a dyke of the most girly persuasion.....so I do enjoy showing off the assets on occasion.
Tomorrow I go in to clean out my cube (didn't get to that today) and then we take down the Christmas tree. Then it's a pre-op physical on Monday, the port implantation surgery on Tuesday, visit with the oncologist on Wednesday, and Chemo #1 on Thursday. And at some point on Wednesday I'm going to stock up on both frozen and fresh veggies and fruits, oatmeal, brown rice and oatmeal and kidney beans, and chicken breast and fish.
My exercise goal going forward is to walk or bike at least 3 times week throughout treatment, for as long as I'm able.
Between the nutrition, exercise, meditation and chemo -- this stupid cancer doesn't stand a chance.
Friday, January 7
TGIF
Today was my last day at work before going out on disability. Super busy wrapping things up, pretty stressful, fairly sad. Those who know about the cancer were so sweet to me -- people are so good. The human capacity for caring is astounding, isn't it?
I'm pretty tired -- I just seem to have no energy these days. I'm going into work tomorrow (Saturday) to clean out my cube and then afterwards I'll go to the dentist for a pre-chemo teeth-cleaning.
I had been looking forward to relaxing Sunday and Monday before the port implantation on Tuesday, the oncologist appt. on Wednesday, and then my first chemo on Thursday -- but my GP's office called me at work today to tell me I had to come in on Monday for a pre-op physical. Fabulous. I tell you, this getting sick business is like a full-time job! So now we've got this to add to the list:
Monday, 1/10: Pre-op physical and EKG at the GP's, in preparation for Tuesday's port implantation.
I'm exhausted, so I'm going to turn in. Boring post -- sorry -- but I just feel so drained. I pushed myself during the day, but now I really could just fall asleep. At 9:00? Not like me, but then it's all new and different these days, so I'm rolling with it.
I'm pretty tired -- I just seem to have no energy these days. I'm going into work tomorrow (Saturday) to clean out my cube and then afterwards I'll go to the dentist for a pre-chemo teeth-cleaning.
I had been looking forward to relaxing Sunday and Monday before the port implantation on Tuesday, the oncologist appt. on Wednesday, and then my first chemo on Thursday -- but my GP's office called me at work today to tell me I had to come in on Monday for a pre-op physical. Fabulous. I tell you, this getting sick business is like a full-time job! So now we've got this to add to the list:
Monday, 1/10: Pre-op physical and EKG at the GP's, in preparation for Tuesday's port implantation.
I'm exhausted, so I'm going to turn in. Boring post -- sorry -- but I just feel so drained. I pushed myself during the day, but now I really could just fall asleep. At 9:00? Not like me, but then it's all new and different these days, so I'm rolling with it.
Thursday, January 6
Little Girls
"Courage, sacrifice, determination, commitment, toughness, heart, talent, guts. That's what little girls are made of; the hell with sugar and spice."
--Unknown
--Unknown
Wednesday, January 5
Report of the Badass Superhero (Who Cries)
Bone marrow biopies are not fun. What a godawful experience. Lidocaine -- that's it. Getting the marrow out was rough, but not quite as traumatic as getting a bone chip. She had to try like six times -- going in again, and again, and again -- then rooting around like a roto rooter in search of that elusive spot on my pelvic bone. I asked if it was more difficult because I'm big (still a size 16, but at least not the 28 that I used to be.) She said yes, and also that it was made more difficult because I am young. Apparently if you're skinny and old, you have a much better time of it! Anyway, she was going to try just one more time (I told her I would lie there all day till she got a chip if I had to) and then she finally did get a little piece. There was no way I was going to go through all that and not even get all that we needed.
It really was hard, though, even for a pain veteran like me. I tried visualization, I urged my body to readily give to her what she was trying to get, I tried to breathe with deep and measured breaths. I didn't cry during the procedure -- not until I saw Lorraine afterwards. During the worst parts I just breathed audibly, clearly pained -- in, out, in, out. Afterwards, when Lorraine came in and we were alone, I just said, "Honey, it really hurt." Then I cried. Something cool is that (at my request) they showed me what they got, and how it looked on the slides also -- really interesting!
After the bone marrow biopsy, I gave blood. It was needed for the establishment of a baseline prior to beginning the chemo, and also they'll need it for Tuesday's surgery, when they put in the port. Throughout the duration of my chemo, I'll need to give blood the day before each treatment. They'll get it directly from my port though, so no more getting stuck for the blood anyway. (If I get Neupogen shots to up my white blood cell count -- and most folks do -- those I'll either give myself or get at the hospital, and they won't go into the port.)
After that Lorraine and I went to the local American Cancer Society to make an appointment to get a wig (they're cheap, so it might be a second one -- they look ridiculous, so I'm not very excited about it and will probably end up getting one of those expensive ones just so I don't feel so foolish.)
Then it was back to the hospital for the echocardiogram, an ultrasound of the heart. Sherry, the technician who performed it, couldn't have been lovelier. She was so sweet to me, and we had a really nice conversation about God and my situation and her nephew, who's a four-year Hodgkins survivor. (Pretty cool seeing my heart pumping away on the screen -- big valves opening and closing, loud beating. Amazing stuff!) The test results are put in the form of a tape, which is then forwarded to my cardiologist (whoever that is) and he or she will analyze it and then forward a report to my oncologist prior to my first treatment. I'd been instructed to strip to the waist and put on a cloth gown, opened in the front. When I was getting dressed afterwards, I noticed blood on my cloth gown, and then looked at the sheets on the bed upon which I'd been lying, and there was a lot of blood there also. (The spot was about 6 inches in diameter.) Well, since I was still wearing my jeans, I felt my hip where the biopsy had been done, and my jeans were soaked. Sherry, the echocardiologist, put a bandage on top of the one that I'd bled through, and off I went.
When I got home, Lorraine and I saw that I'd bled through that new bandage as well, so we removed it and replaced it with a thick gauze. Lorraine was really concerned, but we agreed that if it was still bleeding after another hour or two, we'd call. She was encouraging me to lie down and go to sleep, but I was feeling obstinate and said, "NO, I'm going to write in my blog!" I put on my pj's, sat on the bed, opened the computer, and then almost tipped over I felt so exhausted. Minutes later, I was asleep. Lorraine came up shortly afterwards, tucked me in like a baby, and then made me chicken soup while I slept for another 2 1/2 hours. She's so wonderful to me.
When I'd awakened, I found that she'd arranged for a teeth cleaning on Saturday (they recommend that you do this prior to starting chemo) and had called the doc to get me a prescription for Demerol, just in case I needed it. (I'd the declined the doc's offer after the biopsy.)
So here are the two newest appointments to add to the list:
Saturday, 1/8: Teeth cleaning at the dentist
Tuesday, 1/18: Wig consultation at the American Cancer Society, five days after my first chemo treatment.
So I survived it. My butt is pretty sore, but it really does now feel like I've gotten a swift kick to the rear...just as I'd expected. The repeated burrowing around to find that elusive pelvic bone -- that was a bit of a surprise -- but all's well that ends well. Now I'm just praying that the cancer hasn't spread there yet, as not only does that negatively affect my prognosis, but also we'd have to go back in to make sure later on to make sure we'd gotten it all with the chemo. So please keep your fingers crossed for me. I'll find out when we meet to talk next Wednesday, the day before my first chemo treatment.
Oh, and the chicken soup was great!! I followed it with a slice of dutch apple crumb pie and a scoop of lowfat vanilla ice cream. Such a princess I am!
It really was hard, though, even for a pain veteran like me. I tried visualization, I urged my body to readily give to her what she was trying to get, I tried to breathe with deep and measured breaths. I didn't cry during the procedure -- not until I saw Lorraine afterwards. During the worst parts I just breathed audibly, clearly pained -- in, out, in, out. Afterwards, when Lorraine came in and we were alone, I just said, "Honey, it really hurt." Then I cried. Something cool is that (at my request) they showed me what they got, and how it looked on the slides also -- really interesting!
After the bone marrow biopsy, I gave blood. It was needed for the establishment of a baseline prior to beginning the chemo, and also they'll need it for Tuesday's surgery, when they put in the port. Throughout the duration of my chemo, I'll need to give blood the day before each treatment. They'll get it directly from my port though, so no more getting stuck for the blood anyway. (If I get Neupogen shots to up my white blood cell count -- and most folks do -- those I'll either give myself or get at the hospital, and they won't go into the port.)
After that Lorraine and I went to the local American Cancer Society to make an appointment to get a wig (they're cheap, so it might be a second one -- they look ridiculous, so I'm not very excited about it and will probably end up getting one of those expensive ones just so I don't feel so foolish.)
Then it was back to the hospital for the echocardiogram, an ultrasound of the heart. Sherry, the technician who performed it, couldn't have been lovelier. She was so sweet to me, and we had a really nice conversation about God and my situation and her nephew, who's a four-year Hodgkins survivor. (Pretty cool seeing my heart pumping away on the screen -- big valves opening and closing, loud beating. Amazing stuff!) The test results are put in the form of a tape, which is then forwarded to my cardiologist (whoever that is) and he or she will analyze it and then forward a report to my oncologist prior to my first treatment. I'd been instructed to strip to the waist and put on a cloth gown, opened in the front. When I was getting dressed afterwards, I noticed blood on my cloth gown, and then looked at the sheets on the bed upon which I'd been lying, and there was a lot of blood there also. (The spot was about 6 inches in diameter.) Well, since I was still wearing my jeans, I felt my hip where the biopsy had been done, and my jeans were soaked. Sherry, the echocardiologist, put a bandage on top of the one that I'd bled through, and off I went.
When I got home, Lorraine and I saw that I'd bled through that new bandage as well, so we removed it and replaced it with a thick gauze. Lorraine was really concerned, but we agreed that if it was still bleeding after another hour or two, we'd call. She was encouraging me to lie down and go to sleep, but I was feeling obstinate and said, "NO, I'm going to write in my blog!" I put on my pj's, sat on the bed, opened the computer, and then almost tipped over I felt so exhausted. Minutes later, I was asleep. Lorraine came up shortly afterwards, tucked me in like a baby, and then made me chicken soup while I slept for another 2 1/2 hours. She's so wonderful to me.
When I'd awakened, I found that she'd arranged for a teeth cleaning on Saturday (they recommend that you do this prior to starting chemo) and had called the doc to get me a prescription for Demerol, just in case I needed it. (I'd the declined the doc's offer after the biopsy.)
So here are the two newest appointments to add to the list:
Saturday, 1/8: Teeth cleaning at the dentist
Tuesday, 1/18: Wig consultation at the American Cancer Society, five days after my first chemo treatment.
So I survived it. My butt is pretty sore, but it really does now feel like I've gotten a swift kick to the rear...just as I'd expected. The repeated burrowing around to find that elusive pelvic bone -- that was a bit of a surprise -- but all's well that ends well. Now I'm just praying that the cancer hasn't spread there yet, as not only does that negatively affect my prognosis, but also we'd have to go back in to make sure later on to make sure we'd gotten it all with the chemo. So please keep your fingers crossed for me. I'll find out when we meet to talk next Wednesday, the day before my first chemo treatment.
Oh, and the chicken soup was great!! I followed it with a slice of dutch apple crumb pie and a scoop of lowfat vanilla ice cream. Such a princess I am!
Tuesday, January 4
Chemo 101, and Disability
Lorraine and I met this morning with Jane, a wonderful woman who has been an oncology nurse for 17 years. Jane will be one of my nurses. She spent hours with us, going over my history and getting my stats, and then really doing her best to prepare us both for what we can expect from chemo in general -- and ABVD in particular. We talked about Hodgkins, about the drugs' side effects, about wigs, and about how to protect myself and advocate for myself throughout the process. She was wonderful. When first I cried and then Lorraine followed (we're both sympathy criers,) Jane spoke to me softly with her eyes, and then said loudly and firmly to Lorraine, "It's going to be a HARD ROAD, but it is TREATABLE." At GBMC's Cancer Center, you don't get the same oncology nurse every time, so I won't necessarily have her regularly, but I sure do hope she works Thursdays. She was wise and tender, knowledgeable and tough. 17 years working oncology. Amazing.
I went from there to work, where I had a meeting scheduled with my boss, who's been off since the week before Christmas, so we haven't had much of an opportunity to talk about my work situation. She's lovely, and completely supportive. And the realities are that I get no vacation time going into the new year (as I will not have earned it yet,) and they'll cover my medical premiums for 12 weeks -- after that, I'm on my own. My disability (and FMLA) will be effective after this Friday. I'm not working again this week until Friday, and then that will be my last day. We spoke of my desire to return to the position once I'm done with chemo. She can't promise anything at all, but has no desire to train my replacement. She'd like to make do somehow until my return, but neither of us are sure she can do that. She needs help. Another case of, "Que sara, sara." I'm really sad about it. It's bad enough getting cancer and dealing with all the fear and anxiety around that kind of development -- but then the financial ramifications, and having your career interrupted and probably losing a job you like....well, it's a lot. It's a blow on some different levels.
I thank God for Lorraine. I can't imagine going through this without her. My heart goes out to the folks who have to face these challenges alone.
We'll be ok. I'm excited about getting started! I've told Lorraine that we will both need to remind one another that the worse I get, the better it's working, so we'll need to rejoice when that time comes. Gotta get worse before you get better, sometimes, you know? Jane said it will likely get pretty bad, as the Hodgkins patients are SLAMMED with high doses, and that the alternate week thing gives you two spikes of "peak cell kill" per cycle (28 days.) So it's pretty intense, and it takes a heavy toll over those 6 months. (Or more.) I'm ready, I say. Bring it on. I've got a lovely home filled with lovely quiet furkids and a nice comfy couch. My laptop is wireless, I've got literally hundreds of books it would give me great pleasure to read (or reread) -- and I have an amazingly supportive woman at my side. All that, and my prognosis is good! Life is good. Now where can I get a crash course in meditation?
Tomorrow morning's the bone marrow biopsy. Alrighty then! Doc doesn't know it yet, but she's giving me DRUGS. She typically gives just lidacaine (or whatever it's called.) Not this girl, Madam! This one wants something a bit stronger, thanks very much. That's at 9:00, and then at 1:00, I have the echocardiogram.
Think kind thoughts for my rump and hipbone in the a.m., ok? I'll let you know how it goes.....but already, I'm feeling like a badass superhero.
Now THERE's a mantra for my meditation!
I went from there to work, where I had a meeting scheduled with my boss, who's been off since the week before Christmas, so we haven't had much of an opportunity to talk about my work situation. She's lovely, and completely supportive. And the realities are that I get no vacation time going into the new year (as I will not have earned it yet,) and they'll cover my medical premiums for 12 weeks -- after that, I'm on my own. My disability (and FMLA) will be effective after this Friday. I'm not working again this week until Friday, and then that will be my last day. We spoke of my desire to return to the position once I'm done with chemo. She can't promise anything at all, but has no desire to train my replacement. She'd like to make do somehow until my return, but neither of us are sure she can do that. She needs help. Another case of, "Que sara, sara." I'm really sad about it. It's bad enough getting cancer and dealing with all the fear and anxiety around that kind of development -- but then the financial ramifications, and having your career interrupted and probably losing a job you like....well, it's a lot. It's a blow on some different levels.
I thank God for Lorraine. I can't imagine going through this without her. My heart goes out to the folks who have to face these challenges alone.
We'll be ok. I'm excited about getting started! I've told Lorraine that we will both need to remind one another that the worse I get, the better it's working, so we'll need to rejoice when that time comes. Gotta get worse before you get better, sometimes, you know? Jane said it will likely get pretty bad, as the Hodgkins patients are SLAMMED with high doses, and that the alternate week thing gives you two spikes of "peak cell kill" per cycle (28 days.) So it's pretty intense, and it takes a heavy toll over those 6 months. (Or more.) I'm ready, I say. Bring it on. I've got a lovely home filled with lovely quiet furkids and a nice comfy couch. My laptop is wireless, I've got literally hundreds of books it would give me great pleasure to read (or reread) -- and I have an amazingly supportive woman at my side. All that, and my prognosis is good! Life is good. Now where can I get a crash course in meditation?
Tomorrow morning's the bone marrow biopsy. Alrighty then! Doc doesn't know it yet, but she's giving me DRUGS. She typically gives just lidacaine (or whatever it's called.) Not this girl, Madam! This one wants something a bit stronger, thanks very much. That's at 9:00, and then at 1:00, I have the echocardiogram.
Think kind thoughts for my rump and hipbone in the a.m., ok? I'll let you know how it goes.....but already, I'm feeling like a badass superhero.
Now THERE's a mantra for my meditation!
Sunday, January 2
I'm a coffee bean.
I'm going to share with you a story that a nice friend from 3 Fat Chicks most kindly passed along to me. There's wisdom here for us all.
A young woman went to her mother and told her about her life and how
things were so hard for her. She did not know how she was going to
make it and wanted to give up. She was tired of fighting and
struggling. It seemed as one problem was solved a new one arose.
Her mother took her to the kitchen. She filled three pots with water.
In the first, she placed carrots, in the second she placed eggs and
the last she placed ground coffee beans. She let them sit and boil
without saying a word.
In about twenty minutes she turned off the burners. She fished the
carrots out and placed them in a bowl. She pulled the eggs out and
placed them in a bowl. Then she ladled the coffee out and placed it
in a bowl. Turning to her daughter, she asked, "Tell me what do you
see?"
"Carrots, eggs, and coffee," she replied. She brought her closer and
asked her to feel the carrots. She did and noted that they got soft.
She then asked her to take an egg and break it. After pulling off the
shell, she observed the hard-boiled egg. Finally, she asked her to
sip the coffee.
The daughter smiled, as she tasted its rich aroma. The daughter then
asked,"What's the point, mother?"
Her mother explained that each of these objects had faced the same
adversity--boiling water--but each reacted differently. The carrot
went in strong, hard and unrelenting. However after being subjected
to the boiling water, it softened and became weak. The egg had been
fragile. Its thin outer shell had protected its liquid interior.
But, after sitting through the boiling water, its inside became
hardened. The ground coffee beans were unique, however. After they
were in the boiling water they had changed the water.
"Which are you?" she asked her daughter. "When adversity knocks on
your door, how do you respond? Are you a carrot, an egg, or a coffee
bean?"
Think of this: Which am I? Am I the carrot that seems strong, but
with pain and adversity, do I wilt and become soft and lose my
strength? Am I the egg that starts with a maleable heart, but
changes with the heat?
Did I have a fluid spirit, but after a death, a breakup, a financial
hardship or some other trial, have I become hardened and stiff? Does
my shell look the same, but on the inside am I bitter and tough with
a stiff spirit and a hardened heart?
Or am I like the coffee bean? The bean actually changes the hot
water, the very circumstance that brings the pain. When the water
gets hot, it releases the fragrance and flavor. If you are like the
bean, when things are at their worst, you get better and change the
situation around you.
When the hours are the darkest, and trials are their greatest, do you
elevate to another level?
I'm gearing up for my final day at work. I need to tell people goodbye tomorrow. I know I won't be able to physically sustain 30 hours per week going forward, and this cancer requires that I focus on my healing full time. Not everyone at work knows about my diagnosis, so of course they don't know that I'm leaving. There won't be any announcement till I'm gone. It will be a hard day. I want to tell the people I care about, in my own words. Our holiday party is scheduled on 1/14 -- the day after my first chemo treatment -- and I really hope I can attend. I say now that I WILL attend, even if it's just for an hour. These people are my friends, after a fashion, and it's meant a lot to me to work there. It's a real loss, losing that job. Who knows, maybe I can return to it after the chemo.....that is my dream. It isn't the money -- that's never been the point with this job. I could make a lot more going back into commissioned sales management. It was taking me where I wanted my career to go, though, and it offered quality of life -- as well as a decent wage, a solid stepping stone, and a great boss.
I'm just hoping it's all part of the plan. I'm giving myself up to all of this with blind faith. I offer myself naked, cloaked only in hope. This experience will humble me, bring me to my knees, and punch me in the face with my own mortality. And in return, I will wash myself in love, in endurance, in brave humility. I will open myself to the pain and look for the learning which lies within it. I will seek grace in this experience, and try in word and deed to influence it positively.
This is my hope, and this is my intention.
A young woman went to her mother and told her about her life and how
things were so hard for her. She did not know how she was going to
make it and wanted to give up. She was tired of fighting and
struggling. It seemed as one problem was solved a new one arose.
Her mother took her to the kitchen. She filled three pots with water.
In the first, she placed carrots, in the second she placed eggs and
the last she placed ground coffee beans. She let them sit and boil
without saying a word.
In about twenty minutes she turned off the burners. She fished the
carrots out and placed them in a bowl. She pulled the eggs out and
placed them in a bowl. Then she ladled the coffee out and placed it
in a bowl. Turning to her daughter, she asked, "Tell me what do you
see?"
"Carrots, eggs, and coffee," she replied. She brought her closer and
asked her to feel the carrots. She did and noted that they got soft.
She then asked her to take an egg and break it. After pulling off the
shell, she observed the hard-boiled egg. Finally, she asked her to
sip the coffee.
The daughter smiled, as she tasted its rich aroma. The daughter then
asked,"What's the point, mother?"
Her mother explained that each of these objects had faced the same
adversity--boiling water--but each reacted differently. The carrot
went in strong, hard and unrelenting. However after being subjected
to the boiling water, it softened and became weak. The egg had been
fragile. Its thin outer shell had protected its liquid interior.
But, after sitting through the boiling water, its inside became
hardened. The ground coffee beans were unique, however. After they
were in the boiling water they had changed the water.
"Which are you?" she asked her daughter. "When adversity knocks on
your door, how do you respond? Are you a carrot, an egg, or a coffee
bean?"
Think of this: Which am I? Am I the carrot that seems strong, but
with pain and adversity, do I wilt and become soft and lose my
strength? Am I the egg that starts with a maleable heart, but
changes with the heat?
Did I have a fluid spirit, but after a death, a breakup, a financial
hardship or some other trial, have I become hardened and stiff? Does
my shell look the same, but on the inside am I bitter and tough with
a stiff spirit and a hardened heart?
Or am I like the coffee bean? The bean actually changes the hot
water, the very circumstance that brings the pain. When the water
gets hot, it releases the fragrance and flavor. If you are like the
bean, when things are at their worst, you get better and change the
situation around you.
When the hours are the darkest, and trials are their greatest, do you
elevate to another level?
I'm gearing up for my final day at work. I need to tell people goodbye tomorrow. I know I won't be able to physically sustain 30 hours per week going forward, and this cancer requires that I focus on my healing full time. Not everyone at work knows about my diagnosis, so of course they don't know that I'm leaving. There won't be any announcement till I'm gone. It will be a hard day. I want to tell the people I care about, in my own words. Our holiday party is scheduled on 1/14 -- the day after my first chemo treatment -- and I really hope I can attend. I say now that I WILL attend, even if it's just for an hour. These people are my friends, after a fashion, and it's meant a lot to me to work there. It's a real loss, losing that job. Who knows, maybe I can return to it after the chemo.....that is my dream. It isn't the money -- that's never been the point with this job. I could make a lot more going back into commissioned sales management. It was taking me where I wanted my career to go, though, and it offered quality of life -- as well as a decent wage, a solid stepping stone, and a great boss.
I'm just hoping it's all part of the plan. I'm giving myself up to all of this with blind faith. I offer myself naked, cloaked only in hope. This experience will humble me, bring me to my knees, and punch me in the face with my own mortality. And in return, I will wash myself in love, in endurance, in brave humility. I will open myself to the pain and look for the learning which lies within it. I will seek grace in this experience, and try in word and deed to influence it positively.
This is my hope, and this is my intention.
Saturday, January 1
Happy New Year!
Happy New Year, everyone!
On this first day of the new year, I wish for each of you a year which brings you increased wisdom, happy events, and limitless love. I believe that this will be the year that I kick cancer to the curb. I pray that it stays there. As I sit here thinking of what I want to say, I am filled with more gratitude than hope, more resignation than anger. I've been reading a lot about relapse in advanced Hodgkins Disease, and it's got me worried. I'm trying not to get ahead of myself, and tell myself firmly, "Why don't you kick it the first time, Sarah, before worrying about the second and third times?" No eggs have hatched, but I'm compulsively counting.
Lorraine and I kissed at midnight, and shortly after she was crying. I want to write an uplifting entry, but I can't. I can say that I feel very confident that I will emerge from this first battle victorious. By this time next year, I'll be in remission. I pray to God that I'm among the lucky ones who stay there. If not, I'll fight again, and again if I have to, with Bone Marrow Transplantation or Stem Cell Transplantation, the next step. There are options, should this time not stick.
I should make myself type over and over, "My prognosis is good. My prognosis is good." And it is.
I've been positive, I really have. This is a lapse, like you arrived early at my party and caught me without my make-up on. I need to follow Greg's lead and guide my thoughts more consciously. He really is amazing -- I strongly encourage you to take a peek at his blog. I know I have much to learn from him.
This will be an important year in my life. I wish for each of you some important growth, some amazing self-discovery, the learning of some important life lesson.
Make it a banner year. Because you can.
On this first day of the new year, I wish for each of you a year which brings you increased wisdom, happy events, and limitless love. I believe that this will be the year that I kick cancer to the curb. I pray that it stays there. As I sit here thinking of what I want to say, I am filled with more gratitude than hope, more resignation than anger. I've been reading a lot about relapse in advanced Hodgkins Disease, and it's got me worried. I'm trying not to get ahead of myself, and tell myself firmly, "Why don't you kick it the first time, Sarah, before worrying about the second and third times?" No eggs have hatched, but I'm compulsively counting.
Lorraine and I kissed at midnight, and shortly after she was crying. I want to write an uplifting entry, but I can't. I can say that I feel very confident that I will emerge from this first battle victorious. By this time next year, I'll be in remission. I pray to God that I'm among the lucky ones who stay there. If not, I'll fight again, and again if I have to, with Bone Marrow Transplantation or Stem Cell Transplantation, the next step. There are options, should this time not stick.
I should make myself type over and over, "My prognosis is good. My prognosis is good." And it is.
I've been positive, I really have. This is a lapse, like you arrived early at my party and caught me without my make-up on. I need to follow Greg's lead and guide my thoughts more consciously. He really is amazing -- I strongly encourage you to take a peek at his blog. I know I have much to learn from him.
This will be an important year in my life. I wish for each of you some important growth, some amazing self-discovery, the learning of some important life lesson.
Make it a banner year. Because you can.
Subscribe to:
Posts (Atom)
