I checked into Emory today for the first of 2 full rounds of ICE; I'll be released on Friday. Then I'll have a week off, after which I will go back in for another full round/5 days and then have another week off. Interestingly, he explained that they do the ICE biweekly because of a sort of "two steps forward, one step back" effect. So you start out with this big tumor -- you zap it with chemo and it shrinks. When you take time off of chemo to recuperate, it grows back, increasing in size, and then you zap it again so it grows smaller again. So by doing it every two weeks instead of monthly, you have momentum on your side, resulting in your having responded to chemo adequately. I found that interesting, as well as validating of my decision to switch treatment providers, as I was going to be getting my ICE monthly until making the switch.
The goal is to achieve a full and complete remission prior to going into the SCT. If the chemo alone doesn't do that, then I'll get radiation to the right side of my neck only, isolating the relapse site only. My concern with that was that they'd zap my thyroid as well, but I've been assured that if I do need rads, my thyroid won't be affected and that they'll just get the tumor. But of course, my hope is that the chemo alone will do the job. As I write this, I'm getting infused with 2 hours' worth of Etoposide. Tomorrow I'll be hooked up all day, getting 24 hours of chemo: Ifosfomide, Etoposide, and Cysplatin. I promise I'll update with specifics tomorrow.
Then, after a bunch of tests (PFT, EKG, bilateral BMBs, PET/CT, etc.) I'll participate in a study and get a drug called AMG3100, which not only puts your bone marrow into overdrive as Neupogen does, but it does something to sort of "fill up" your bone marrow (or something like that) so the stem cells have no place to go but into your bloodstream, thereby giving them many more stem cells to collect when they go to harvest. Following the AMD3100 I will go back for collection/harvesting of my stem cells, and then I'll have high dose chemo (probably busulfan, my transplant oncologist said) and after THAT they'll give the stem cells back to me. He said that one month will pass between the end of my next round of ICE and the transplant (stem cell infusion.) I'll be hospitalized for a few weeks until it's medically safe to release me from the hospital. Initially, I'll return to Emory 3 times a week (barring unforseen circumstances) and then taper off gradually. Once the transplant team feel that I'm stable, they'll turn me back over to the care of my other oncologist (the one I love who's so accessible and communicative) -- with regular follow-up with the Emory transplant onc and his team. Sounds like a plan, doesn't it?!
Lorraine and I are absolutely ready for this. We're both just so relieved that I"m doing this inpatient, and that the cancer will be treated as aggressively as possible. What I feel more than anything else is an overriding desire just gain some real momentum. I want to drive headlong into the fray, do what's required, achieve greater than expected results and then get to the other side. I want to know that there's no more cancer in my body, and that I have a fighting chance at a durable remission.....and beyond that, a cure.
My first day here has been a flurry of preparatory activity leading up to tonight's infusion. One high point was the measuring of my palpable mass, which the pre-treatment PET showed as 3.6 x 3.9 centimeters. Today's measure (albeit through the Physician's Assistant's physical exam, not a scan) was 2.5 x 2.5!! Woo hoo! That sure as hell motivates me to welcome this next round of ICE into my body. ICE, just keep working your magic!!
Monday, July 31
Tuesday, July 25
And there was much rejoicing!
Woo hooooo!! My relapse mass of 3.6 x 3.9 cm is located just over my right collarbone -- and under it also, apparently. Anyway, it seemed to have appeared almost overnight -- just this big freaking mass just suddenly popped up to drastically change the shape of my neck -- so big that it limited the degree to which I could turn my head to the right. It was so obvious, that when we learned that it was there after the scan, we were flabbergasted that neither of us had noticed it before.
Anyway!! I have been FORCING myself not to look at it, oh, like 89 times a day to see if the ICE is having an immediate impact. Tonight I broke down and looked at it, and felt it also. IT'S LIKE HALF THE SIZE IT WAS!!!! After just one mini-ICE treatment!!! I ran and showed it to Lorraine, who was simply amazed. It's SO MUCH SMALLER!! And I have two full ICE treatments to go before collection and then high dose chemo!!
With tears in my eyes, I was so thankful. Thank God, thank God, thank God!! Your long term prognosis is supposed to be better if, when you go into the SCT, you're in remission (no evidence of disease) vs. reduced disease. It's still very good if your disease has significantly reduced, because that means you're chemo-responsive. But the dream is that you've got rid of all of it before the SCT. I'll be rescanned before collection, I think, so we know where we stand going into it.
MAN, I LOVE CHEMOTHERAPY!! Chemo might be the best friend I've ever had.
Ding, ding, ding, diggading, ding. Ding, ding, ding, diggading, ding. ICE, ICE, baby!
Monday, July 24
Emotional
Two nights ago, Lorraine and I joined two friends in attending an excellent local high school production of Les Miserables. They performed in the city's community center and it was a surprisingly moving and professionally delivered production. I found that every time someone prayed for someone else's life or well-being, I cried a lot. Big, fat tears falling -- me blotting so there'd be no evidence.
And it occurred to me the next day that I hadn't yet spoken much here about my how I feel about all of this. I have this rawness just beneath the surface that I haven't articulated fully to anyone but Lorraine.
Disclaimer: I guess I should preface this first with a reference to my overall state of mind and heart. The truth is that what I'm feeling most is hope, receptiveness, and positivity. I really do feel great about the move to Emory, and I have positive expectations for the end result of my SCT. I'm very grateful that this treatment exists at all, because without it I'd have been given a death sentence. There remains however, in addition to an overall positive outlook, a lot of fear and pain.
I'm afraid. And worried for Lorraine. You can't help but think of death when you're in this situation, even if you don't expect for it to happen. You think of how your partner and family (in my case, Lorraine and eight furkids!) will cope without you. There are so many components to loss. I know, because I lost my first girlfriend after being together for a year and a half. I was wrecked. And I didn't have a mortgage, credit card debt and 8 kids with Amy, as I do with Lorraine. Lorraine and I love one another so much, and we depend on one another so deeply, it's impossible to contemplate either of us alone. You think also of those whom you'll miss -- with the assumption that you'll be in a "missing" state of being, like you're standing outside a window with your nose pressed against the glass. I find myself feeling a surge of emotion upon gazing at Lorraine or any of our pets.
I remember, just after my diagnosis, coming out of a store and feeling the sun's glare full in my eyes and getting struck by such sadness and fear. It felt like loss. I am one of those rare creatures who loves having the sun in their eyes -- in addition to feeling like I'm just a bit more alive when that happens, I'm also pleased that my eyes shine bright olive green in that light. I remember feeling that wonderful joy in being alive I normally feel, I also felt a stabbing sorrow for Lorraine -- if I weren't around, who would stop her from her speeding pace to pause to contemplate beauty and enjoy the purest moments?
I'm not sure if, presented with a friend going down this train of thought, I'd encourage her to just stop that crazy talk and concentrate on the positive, or if I'd let her go to the end of the thought and back again and, having done the inevitable and shed herself of the weight of it, freed herself to contemplate all of her energies solely on the fight ahead, with no option for anything but complete remission.
It's scary though, you know? I'm sorry that I have to go through the misery of the treatment itself, but that's not really the big deal to me. It sucks, but oh well -- the real fear to me is that the treatment doesn't give me a cure.
So I'm fragile. I don't get to talk about it very much at all, because I don't want to upset Lorraine, and I feel like I have to put on a doggedly positive face to literally everyone else in my life. What else are you going to do? Fall into a puddle? I remember saying in response to my initial diagnosis, and the subsequent praise I got for my consistently positive demeanor, that I didn't "have the luxury of falling onto my fainting couch" to bemoan my fate and wonder "Why me??" I feel the same way today.
I'm completely determined to go through this smiling and with as much dignity and grace as I can muster. I also intend to post here regularly, with the support of Lorraine on my bad days. Someone I'm just in awe of, Angie, is religious about posting an update to her blog literally every single day of her transplant -- the good, the bad, and the ugly. And through it all, she's the picture of dignity and grace. I'm not sure I'm going to commit now to daily updates every single day, but that's the [forgiving] goal. You'll understand if I miss a day here or there, right?
I guess the point I'm trying to make here is that, while I'm determined, informed and positive, I also, on a much smaller basis, worry and get afraid and cry.
All I can say is that I better freakin' drop some pounds during this experience, at least. Hear what I'm sayin'?
And it occurred to me the next day that I hadn't yet spoken much here about my how I feel about all of this. I have this rawness just beneath the surface that I haven't articulated fully to anyone but Lorraine.
Disclaimer: I guess I should preface this first with a reference to my overall state of mind and heart. The truth is that what I'm feeling most is hope, receptiveness, and positivity. I really do feel great about the move to Emory, and I have positive expectations for the end result of my SCT. I'm very grateful that this treatment exists at all, because without it I'd have been given a death sentence. There remains however, in addition to an overall positive outlook, a lot of fear and pain.
I'm afraid. And worried for Lorraine. You can't help but think of death when you're in this situation, even if you don't expect for it to happen. You think of how your partner and family (in my case, Lorraine and eight furkids!) will cope without you. There are so many components to loss. I know, because I lost my first girlfriend after being together for a year and a half. I was wrecked. And I didn't have a mortgage, credit card debt and 8 kids with Amy, as I do with Lorraine. Lorraine and I love one another so much, and we depend on one another so deeply, it's impossible to contemplate either of us alone. You think also of those whom you'll miss -- with the assumption that you'll be in a "missing" state of being, like you're standing outside a window with your nose pressed against the glass. I find myself feeling a surge of emotion upon gazing at Lorraine or any of our pets.
I remember, just after my diagnosis, coming out of a store and feeling the sun's glare full in my eyes and getting struck by such sadness and fear. It felt like loss. I am one of those rare creatures who loves having the sun in their eyes -- in addition to feeling like I'm just a bit more alive when that happens, I'm also pleased that my eyes shine bright olive green in that light. I remember feeling that wonderful joy in being alive I normally feel, I also felt a stabbing sorrow for Lorraine -- if I weren't around, who would stop her from her speeding pace to pause to contemplate beauty and enjoy the purest moments?
I'm not sure if, presented with a friend going down this train of thought, I'd encourage her to just stop that crazy talk and concentrate on the positive, or if I'd let her go to the end of the thought and back again and, having done the inevitable and shed herself of the weight of it, freed herself to contemplate all of her energies solely on the fight ahead, with no option for anything but complete remission.
It's scary though, you know? I'm sorry that I have to go through the misery of the treatment itself, but that's not really the big deal to me. It sucks, but oh well -- the real fear to me is that the treatment doesn't give me a cure.
So I'm fragile. I don't get to talk about it very much at all, because I don't want to upset Lorraine, and I feel like I have to put on a doggedly positive face to literally everyone else in my life. What else are you going to do? Fall into a puddle? I remember saying in response to my initial diagnosis, and the subsequent praise I got for my consistently positive demeanor, that I didn't "have the luxury of falling onto my fainting couch" to bemoan my fate and wonder "Why me??" I feel the same way today.
I'm completely determined to go through this smiling and with as much dignity and grace as I can muster. I also intend to post here regularly, with the support of Lorraine on my bad days. Someone I'm just in awe of, Angie, is religious about posting an update to her blog literally every single day of her transplant -- the good, the bad, and the ugly. And through it all, she's the picture of dignity and grace. I'm not sure I'm going to commit now to daily updates every single day, but that's the [forgiving] goal. You'll understand if I miss a day here or there, right?
I guess the point I'm trying to make here is that, while I'm determined, informed and positive, I also, on a much smaller basis, worry and get afraid and cry.
All I can say is that I better freakin' drop some pounds during this experience, at least. Hear what I'm sayin'?
Friday, July 21
To Clarify
I've had a couple of questions about why I'm switching oncologists when I've so loved Dr. Dubovsky. So here's some clarification:
I'm switching for a couple of reasons. First, in communicating with about a dozen SCT survivors, I found that only ONE had had mini-ICE, and that only because the outpatient delivery of his treatment compromised his physical ability to withstand the full regimen. Additionally, with the exception of this fellow and myself, literally everyone else had their ICE delivered inpatient, with a hospital stay of 4-5 days. Dr. Dubovsky wanted to give me some variation on an abbreviated (mini) ICE because it's so difficult to manage the side effects on an outpatient basis.
Further, most of them received their ICE every other week, whereas with Dr. Dubovsky I would receive my treatment monthly. One mini-ICe, wait a month, get another mini-ICE. Versus one full ICE, take a week off, get another full ICE, take a week off, and then get a third full ICE.
Finally, if I stay with Dr. Dubovsky, I can only get my transplant on an outpatient basis through the Blood and Marrow Transplant Group of Georgia, through Northside Hospital. While I liked the folks I met there very much, doing it outpatient would require that I relocate to either a temporary apartment close to the hospital or the Hope Lodge close to Emory and go to the clinic every single day. Every single day for several weeks I would have to get up, get dressed, put on a mask and get in the car to go to the clinic and pay a co-pay, parking, gas, food, and everything else. Lorraine can't take a month off to be with me 24/7. She has to work. But I still can't be alone at ALL, and would need someone to cart me around to appointments and be ready to rush me to the hospital if needed. So I'd have to piece together a schedule of Lorraine on this day (while someone else stayed at our house to care for our 8 animals,) a friend on that day, a neighbor on this other day....it's crazy. Not to mention the increased risk of infection, the managing of the side effects at home with the assistance of someone who's NOT a nurse....it's just too much. Conversely, if I have it done at Emory, considered by most to be a superior institution, I would have the whole thing done inpatient and Lorraine and others could visit me when they're able. No daily gas, co-pay, out of pocket for meds, eats, parking, etc.
So it seems to me to be a no-brainer. I'm indescribably relieved. I feel now that I'm going to get the most aggressive treatment I can in a place that offers the maximum resources in the southeast, and we will sustain less economic hardship. I won't have to waste my finite energy getting dressed and putting on make-up (because I do that no matter how sick I am -- as an old-school femme I'm that kind of girl) and then driving around every day to get to a place where I have to take 2 elevators to even get to the treatment before returning home again.
I am sorry to lose Dr. Dubovsky, but I just can't compromise my treatment and economic and personal well-being in order to accomodate the method of delivery employed by his organization. He's wonderful, but he's just not the right guy for this moment in my cancer life. Maybe afterwards...
Hope this answers any questions!
I'm switching for a couple of reasons. First, in communicating with about a dozen SCT survivors, I found that only ONE had had mini-ICE, and that only because the outpatient delivery of his treatment compromised his physical ability to withstand the full regimen. Additionally, with the exception of this fellow and myself, literally everyone else had their ICE delivered inpatient, with a hospital stay of 4-5 days. Dr. Dubovsky wanted to give me some variation on an abbreviated (mini) ICE because it's so difficult to manage the side effects on an outpatient basis.
Further, most of them received their ICE every other week, whereas with Dr. Dubovsky I would receive my treatment monthly. One mini-ICe, wait a month, get another mini-ICE. Versus one full ICE, take a week off, get another full ICE, take a week off, and then get a third full ICE.
Finally, if I stay with Dr. Dubovsky, I can only get my transplant on an outpatient basis through the Blood and Marrow Transplant Group of Georgia, through Northside Hospital. While I liked the folks I met there very much, doing it outpatient would require that I relocate to either a temporary apartment close to the hospital or the Hope Lodge close to Emory and go to the clinic every single day. Every single day for several weeks I would have to get up, get dressed, put on a mask and get in the car to go to the clinic and pay a co-pay, parking, gas, food, and everything else. Lorraine can't take a month off to be with me 24/7. She has to work. But I still can't be alone at ALL, and would need someone to cart me around to appointments and be ready to rush me to the hospital if needed. So I'd have to piece together a schedule of Lorraine on this day (while someone else stayed at our house to care for our 8 animals,) a friend on that day, a neighbor on this other day....it's crazy. Not to mention the increased risk of infection, the managing of the side effects at home with the assistance of someone who's NOT a nurse....it's just too much. Conversely, if I have it done at Emory, considered by most to be a superior institution, I would have the whole thing done inpatient and Lorraine and others could visit me when they're able. No daily gas, co-pay, out of pocket for meds, eats, parking, etc.
So it seems to me to be a no-brainer. I'm indescribably relieved. I feel now that I'm going to get the most aggressive treatment I can in a place that offers the maximum resources in the southeast, and we will sustain less economic hardship. I won't have to waste my finite energy getting dressed and putting on make-up (because I do that no matter how sick I am -- as an old-school femme I'm that kind of girl) and then driving around every day to get to a place where I have to take 2 elevators to even get to the treatment before returning home again.
I am sorry to lose Dr. Dubovsky, but I just can't compromise my treatment and economic and personal well-being in order to accomodate the method of delivery employed by his organization. He's wonderful, but he's just not the right guy for this moment in my cancer life. Maybe afterwards...
Hope this answers any questions!
Thursday, July 20
Things will really speed up now!
I'm pretty excited! I will definitely be moving forward with switching my treatment to Emory Winship Cancer Center.
I meet next Thursday with Dr. Waller, the Director of the Transplant Center. He will be my doctor, and all of my treatment will occur within the center with the support of the transplant team. At the time of that meeting, he will be prepared with recommendations for my treatment, and will in all likelihood want me to be admitted the following Monday for a second cycle of ICE, a full treatment requiring a hospital stay of 4-5 days. I'll have a week off, and then go back for a third cycle, also inpatient, a repeat of the second cycle. Stem cell collection will follow that, after which I will be admitted for several weeks to get high dose chemo before the stem cells are given back to me and I'm watched there until my counts are back up to a level that allows me to safely leave the hospital. I will have a private room, which will have a seat that opens up into a bed for any guest sleep-overs!
I'm so relieved, it's almost overwhelming. My present oncologist was doing a mini-ICE followed by 3 weeks off, then another mini-ICE. I just need more, and faster. I'm so happy that I'm going to see a ramp-up in the action taken to get me as close as possible to remission before the transplant. I feel so much safer, it's hard to describe. I said elsewhere that I feel like I've been fighting alone and the cavalry just arrived!
In other news, I got interviewed today by a lovely woman for an article she's writing for Women's Health and Fitness magazine on women who blog about their health and weight loss! Once she's written it, she'll forward it to me and I'll post it here! Last year I got interviewed for a book on weight loss but, alas, I never got the copy the writer had promised me I'd get from the publisher. I should ask her about that! I'd have to dig up the name of it. I think I will so I can get a copy!
So things are moving along. I'll update when I know more.
I meet next Thursday with Dr. Waller, the Director of the Transplant Center. He will be my doctor, and all of my treatment will occur within the center with the support of the transplant team. At the time of that meeting, he will be prepared with recommendations for my treatment, and will in all likelihood want me to be admitted the following Monday for a second cycle of ICE, a full treatment requiring a hospital stay of 4-5 days. I'll have a week off, and then go back for a third cycle, also inpatient, a repeat of the second cycle. Stem cell collection will follow that, after which I will be admitted for several weeks to get high dose chemo before the stem cells are given back to me and I'm watched there until my counts are back up to a level that allows me to safely leave the hospital. I will have a private room, which will have a seat that opens up into a bed for any guest sleep-overs!
I'm so relieved, it's almost overwhelming. My present oncologist was doing a mini-ICE followed by 3 weeks off, then another mini-ICE. I just need more, and faster. I'm so happy that I'm going to see a ramp-up in the action taken to get me as close as possible to remission before the transplant. I feel so much safer, it's hard to describe. I said elsewhere that I feel like I've been fighting alone and the cavalry just arrived!
In other news, I got interviewed today by a lovely woman for an article she's writing for Women's Health and Fitness magazine on women who blog about their health and weight loss! Once she's written it, she'll forward it to me and I'll post it here! Last year I got interviewed for a book on weight loss but, alas, I never got the copy the writer had promised me I'd get from the publisher. I should ask her about that! I'd have to dig up the name of it. I think I will so I can get a copy!
So things are moving along. I'll update when I know more.
Tuesday, July 18
I'm going to Emory
Hello from the infusion room! (God, I love my laptop.) Today's appointment was for a visit with my Nurse Practioner and labs: urine and blood. My CBC counts were excellent across the board. Another 3+ blood level in the urine, which is awful and necessitated another visit to the infusion room for more hydration and Mesna, the bladder-protectant medicine. I did learn that my blood is negative for protein, which reflects the fact that I AM drinking lots of fluid at home. So at least that was validating.
This prompted a brief conversation with my oncologist, Dr. Dubovsky, who referred again to the difficulty of putting me on a full dose of the ifosfamine because of the hydration issue. So HOSPITALIZE ME FOR 3-4 DAYS!!!
Between his reception area at one end of this very long cancer center, and the infusion room at the other end, I made up my mind that I was going to pursue a second opinion at Emory's Winship Institute. A couple of phone calls later, my records were being faxed by Dr. D's office to Emory, and I'm to expect a call back from someone on their Transplant team regarding an appointment right away.
I'll keep you posted, but there could be some changes right away. I love my present oncologist, but I just can't allow my salvage chemo treatment to be compromised because of this center's method of delivery. My only goal is to get rid of this cancer, and I need the biggest guns necessary to do it. I also can't waste so much of my finite energy fighting to get this done inpatient. If Emory does it inpatient -- and I believe that they do -- then that piece is a done deal, with just the selection of an Emory-affiliated oncologist remaining. If I'm not mistaken, this person would oversee my final ICE treatment(s) before the SCT process would begin.
Oh, in other news, on Thursday I'll go to the cardiologist to get a 24-hour heart monitor so they can check out my irregular heart beat. I really do love my current oncologist, I'm just not sure he's the right guy (given Atlanta Cancer Care's outpatient methodologies) for this moment in my cancer life. AFTER the SCT, great! I'd love to go back to him, because he's passionate, driven, and honest. (And ACCESSIBLE!)
The priority right NOW, though, is just to do the very best we can with this one opportunity I have for a cure. This is it for me. I'm not fucking around with this. I'm not going to look back on this with any "if only I'd..." or "why didn't I...." This oncologist said it himself: "Sarah, we're not going to get another chance to get this right."
I'll keep you posted.
This prompted a brief conversation with my oncologist, Dr. Dubovsky, who referred again to the difficulty of putting me on a full dose of the ifosfamine because of the hydration issue. So HOSPITALIZE ME FOR 3-4 DAYS!!!
Between his reception area at one end of this very long cancer center, and the infusion room at the other end, I made up my mind that I was going to pursue a second opinion at Emory's Winship Institute. A couple of phone calls later, my records were being faxed by Dr. D's office to Emory, and I'm to expect a call back from someone on their Transplant team regarding an appointment right away.
I'll keep you posted, but there could be some changes right away. I love my present oncologist, but I just can't allow my salvage chemo treatment to be compromised because of this center's method of delivery. My only goal is to get rid of this cancer, and I need the biggest guns necessary to do it. I also can't waste so much of my finite energy fighting to get this done inpatient. If Emory does it inpatient -- and I believe that they do -- then that piece is a done deal, with just the selection of an Emory-affiliated oncologist remaining. If I'm not mistaken, this person would oversee my final ICE treatment(s) before the SCT process would begin.
Oh, in other news, on Thursday I'll go to the cardiologist to get a 24-hour heart monitor so they can check out my irregular heart beat. I really do love my current oncologist, I'm just not sure he's the right guy (given Atlanta Cancer Care's outpatient methodologies) for this moment in my cancer life. AFTER the SCT, great! I'd love to go back to him, because he's passionate, driven, and honest. (And ACCESSIBLE!)
The priority right NOW, though, is just to do the very best we can with this one opportunity I have for a cure. This is it for me. I'm not fucking around with this. I'm not going to look back on this with any "if only I'd..." or "why didn't I...." This oncologist said it himself: "Sarah, we're not going to get another chance to get this right."
I'll keep you posted.
Sunday, July 16
Greetings from ICEland!
Well here's a long overdue blog update on my life in ICEland -- as in life in the land of Ifosfamine (with its accompanying side dish of Mesna,) Etoposide, and Carboplatin. Mm, mm, good chemo yumminess!
Truth be told, ICE pretty much sucks. That said, my onc started me out with the 2-day regimen, not the 3, as he was concerned about toxicity and the effect of 2-3 cycles of the very harsh ICE on my marrow's ability to produce stem cells. I was devastated when I heard -- on the morning of my first day of the salvage chemo, no less -- that I was getting the abbreviated, not full, version. I cried, then pulled myself together to face the first day of chemo with my game face on. At home, I cried some more, and then, after gaining valuable insight from the SCT vets over at the HD board, gathered my wits and gumption and got ready to lobby my case the following day. The next morning brought -- you guessed it! -- more tears, as I was sharing my side effects and concerns with the absolutely amazing nurse practioner, Marcia. We just love us some Marcia! She's compassionate, thorough, communicative, fully present, and damned if she doesn't touch base with me literally every day! I find this simply astounding.
Anyway, so I was talking to Marcia about my grave concern about getting the mini-ICE -- as if I need a mini-ANYTHING at this stage in my fight -- and sharing the email I'd sent to my oncologist (her boss) the night before on the same topic. She told me that apparently there had been a number of conversations about which ICE regimen to give me, and that he'd gone with this one to start, with the thought that we could amp up the next cycle as long as I was able to manage this level. HA! I spit on this mini-ICE! I've actually managed it beautifully, if you don't consider the pesky matter of tons-o-blood in the urine! Yep, the ifosfamide is a terror on the bladder and, while the Mesna is an effective bladder protectant, it is not sufficient if you don't drink enough fluids. In addition to getting 2 liters of hydration in the infusion room, I was drinking at least 90 oz. of water a day. Not enough. Now I know why all those ICE/SCT vets got their ICE treatments inpatient! They could manage the hydration.
Oh! Also, I learned that ifosfamide does a job on the emotions, making you much more emotional and in some cases -- and pardon me, this is a medical term here -- downright crazy. So I had that working against me in the tears department.
ALSO working against me was the fact that I was premenstrual! I know -- here's that word again -- crazy. So I go in on Day 3 for my labs. I give my urine, and I'm pretty proud of it, if I do say so myself. Day 2's pee pee was a scary thing, so I was mightily pleased when I saw this light, wholesome sample. Nope. Apparently a 3+ on the "presence of blood" scale, which is quite bad. So I get hooked up and get a liter of fluid in the infusion room before giving another sample. I'm sure I'm going to do well now. I sashay into the ladies room (and yes, I am an unabashed sashayer,) and tinkle away with a smug smile on my face, sure that NOW I'm going to have a lovely, pure sample to give. I lifted the cup up....and that's when I discovered the arrival of what I'm sure will be the last period I'll ever have.
So I had cramps in addition to all the normal ICE side effects: fatigue, pain, nausea, headache, irregular heart beat, bad taste in the mouth, and that god-awful chemo-hangover feeling. At least I knew I wasn't out of my mind with the crying! Oh, and it's supposed to cause diarrhea in 99 out of 100 patients. I would be the 100th, it seems (leave it to me!) as I had some pretty bad constipation which has been eased by Senna (hello, old friend.)
That same day I started Neulasta, another old friend. Man, does that stuff make me hurt! As I did last year, I enjoyed again that "just struck by a truck" feeling. I do not want to sound ungrateful, though -- I thank God that Neulasta exists, for without it, we cancer patients would be in a very bad way indeed. Neutropenia is not a good place to live.
As for how ICE is for me, I'd say that -- so far, at least -- it's actually similar to ABVD, but just really amped up. Yeah, I think it's like a really magnified ABVD....plus the bladder thing. I do feel a certain - AWARENESS of my bladder now, which can't be good. I am up to 110 oz. of water now, and I do make a point of not holding my water. The nurses warn not to hold, as you want that ifosfamide out of your system just as soon as you can move it; you do NOT want it sitting in your bladder at all. It's no joke, that ifosfamide.
Now, regarding ICE Round II, word is, I'm going to get the full ICE, delivered over 3 days, and with some of it 24 hours and delivered via pump, as it will again be given to me outpatient. (Unlike literally any of my pre-SCT ICE peers, who all were watched closely on an inpatient basis. When I meet with my onc I'll ask him why they insist on doing it all outpatient.)
For those of you for whom this was all a review, I apologize. I have updated the Hodgkins message board daily, so they've gotten the blow-by-blow, with lots of details I didn't share here. If, however, you're just aching for those details, or if you're researching SCTs for your own upcoming experience, I'll share this link, and this, and this. To you I apologize for not fully sharing here; I just had finite stores of communicative wherewithall, and they got it on the board.
Thank you to all those who've commented, emailed, and given support. You really just have no idea how much it helps. I thank you from the bottom of my heart.
Oh! And to those who have just a little more support to give, this incredible woman is in the throes of her own SCT experience right now and could probably use some more love, if you've got any spare to share.
Truth be told, ICE pretty much sucks. That said, my onc started me out with the 2-day regimen, not the 3, as he was concerned about toxicity and the effect of 2-3 cycles of the very harsh ICE on my marrow's ability to produce stem cells. I was devastated when I heard -- on the morning of my first day of the salvage chemo, no less -- that I was getting the abbreviated, not full, version. I cried, then pulled myself together to face the first day of chemo with my game face on. At home, I cried some more, and then, after gaining valuable insight from the SCT vets over at the HD board, gathered my wits and gumption and got ready to lobby my case the following day. The next morning brought -- you guessed it! -- more tears, as I was sharing my side effects and concerns with the absolutely amazing nurse practioner, Marcia. We just love us some Marcia! She's compassionate, thorough, communicative, fully present, and damned if she doesn't touch base with me literally every day! I find this simply astounding.
Anyway, so I was talking to Marcia about my grave concern about getting the mini-ICE -- as if I need a mini-ANYTHING at this stage in my fight -- and sharing the email I'd sent to my oncologist (her boss) the night before on the same topic. She told me that apparently there had been a number of conversations about which ICE regimen to give me, and that he'd gone with this one to start, with the thought that we could amp up the next cycle as long as I was able to manage this level. HA! I spit on this mini-ICE! I've actually managed it beautifully, if you don't consider the pesky matter of tons-o-blood in the urine! Yep, the ifosfamide is a terror on the bladder and, while the Mesna is an effective bladder protectant, it is not sufficient if you don't drink enough fluids. In addition to getting 2 liters of hydration in the infusion room, I was drinking at least 90 oz. of water a day. Not enough. Now I know why all those ICE/SCT vets got their ICE treatments inpatient! They could manage the hydration.
Oh! Also, I learned that ifosfamide does a job on the emotions, making you much more emotional and in some cases -- and pardon me, this is a medical term here -- downright crazy. So I had that working against me in the tears department.
ALSO working against me was the fact that I was premenstrual! I know -- here's that word again -- crazy. So I go in on Day 3 for my labs. I give my urine, and I'm pretty proud of it, if I do say so myself. Day 2's pee pee was a scary thing, so I was mightily pleased when I saw this light, wholesome sample. Nope. Apparently a 3+ on the "presence of blood" scale, which is quite bad. So I get hooked up and get a liter of fluid in the infusion room before giving another sample. I'm sure I'm going to do well now. I sashay into the ladies room (and yes, I am an unabashed sashayer,) and tinkle away with a smug smile on my face, sure that NOW I'm going to have a lovely, pure sample to give. I lifted the cup up....and that's when I discovered the arrival of what I'm sure will be the last period I'll ever have.
So I had cramps in addition to all the normal ICE side effects: fatigue, pain, nausea, headache, irregular heart beat, bad taste in the mouth, and that god-awful chemo-hangover feeling. At least I knew I wasn't out of my mind with the crying! Oh, and it's supposed to cause diarrhea in 99 out of 100 patients. I would be the 100th, it seems (leave it to me!) as I had some pretty bad constipation which has been eased by Senna (hello, old friend.)
That same day I started Neulasta, another old friend. Man, does that stuff make me hurt! As I did last year, I enjoyed again that "just struck by a truck" feeling. I do not want to sound ungrateful, though -- I thank God that Neulasta exists, for without it, we cancer patients would be in a very bad way indeed. Neutropenia is not a good place to live.
As for how ICE is for me, I'd say that -- so far, at least -- it's actually similar to ABVD, but just really amped up. Yeah, I think it's like a really magnified ABVD....plus the bladder thing. I do feel a certain - AWARENESS of my bladder now, which can't be good. I am up to 110 oz. of water now, and I do make a point of not holding my water. The nurses warn not to hold, as you want that ifosfamide out of your system just as soon as you can move it; you do NOT want it sitting in your bladder at all. It's no joke, that ifosfamide.
Now, regarding ICE Round II, word is, I'm going to get the full ICE, delivered over 3 days, and with some of it 24 hours and delivered via pump, as it will again be given to me outpatient. (Unlike literally any of my pre-SCT ICE peers, who all were watched closely on an inpatient basis. When I meet with my onc I'll ask him why they insist on doing it all outpatient.)
For those of you for whom this was all a review, I apologize. I have updated the Hodgkins message board daily, so they've gotten the blow-by-blow, with lots of details I didn't share here. If, however, you're just aching for those details, or if you're researching SCTs for your own upcoming experience, I'll share this link, and this, and this. To you I apologize for not fully sharing here; I just had finite stores of communicative wherewithall, and they got it on the board.
Thank you to all those who've commented, emailed, and given support. You really just have no idea how much it helps. I thank you from the bottom of my heart.
Oh! And to those who have just a little more support to give, this incredible woman is in the throes of her own SCT experience right now and could probably use some more love, if you've got any spare to share.
Monday, July 10
ICE, ICE, Baby!
Ding, ding, ding, diggading ding. Ding, ding, ding, diggading ding. John, an absolutely brilliant online friend from the Hodgkins Board wrote this for me:
Isn't that awesome?? OK, so Vanilla Ice never was my fave, but how do you not love that song??
So tomorrow's the big day. Day One of ICE. To be followed by Day Two of ICE. The first day should be a six-hour deal, with the next day an hour or so shorter, if everything goes as planned. It's late now and I'm pretty exhausted after my esophageal dilatation today, preceded by a Teach session of ICE.
This weekend has been amazingly hectic. We got the furniture delivered on Saturday, and immediately set about preparing the house for Lorraine's family. We hung every picture, placed every lamp, sculpture and vase, and cleaned like fiends. Sunday evening brought a bright spot with a gathering in my honor of my coworkers at the interim job I had as a design consultant.
The house looks pretty great -- it's amazing to think of it's transformation since Saturday. Poor Lorraine has borne the lion's share of of the work because between my port implantation surgery of Friday (to which I responded pretty poorly, with a lot of pain associated with the general anesthesia to which they had to resort because under the twilight I kept scratching my face and neck) and today's surgery (also with anesthesia, but with a lot of pain resulting from the procedure itself) -- I've just been really struggling to pull my weight. I've been instructed to do NOTHING, but that's just not fair when there's so much to do.
So tomorrow morning Lorraine and our sweet friend Ginger will take me to chemo at 9:15, Lorraine will leave at around 10:30 to pick up her mother, sister and her sister's two kids from the airport, drop them off at the house, and then head back to finish out chemo with me. I should be done around 3:30, I think.
Happy thoughts and good vibes welcome.
STOP! Collaborate and listen
Sarah's back with a brand new injection
Lorraine grabs a hold of her tightly
Flow through her veins both daily and nightly
Will she ever stop - HELL NO!
Turn off the lights and she'll glow
To the extreme she rocks LIFE like a vandal
Lights up her world and burns Hodge's ass like a candle...
Isn't that awesome?? OK, so Vanilla Ice never was my fave, but how do you not love that song??
So tomorrow's the big day. Day One of ICE. To be followed by Day Two of ICE. The first day should be a six-hour deal, with the next day an hour or so shorter, if everything goes as planned. It's late now and I'm pretty exhausted after my esophageal dilatation today, preceded by a Teach session of ICE.
This weekend has been amazingly hectic. We got the furniture delivered on Saturday, and immediately set about preparing the house for Lorraine's family. We hung every picture, placed every lamp, sculpture and vase, and cleaned like fiends. Sunday evening brought a bright spot with a gathering in my honor of my coworkers at the interim job I had as a design consultant.
The house looks pretty great -- it's amazing to think of it's transformation since Saturday. Poor Lorraine has borne the lion's share of of the work because between my port implantation surgery of Friday (to which I responded pretty poorly, with a lot of pain associated with the general anesthesia to which they had to resort because under the twilight I kept scratching my face and neck) and today's surgery (also with anesthesia, but with a lot of pain resulting from the procedure itself) -- I've just been really struggling to pull my weight. I've been instructed to do NOTHING, but that's just not fair when there's so much to do.
So tomorrow morning Lorraine and our sweet friend Ginger will take me to chemo at 9:15, Lorraine will leave at around 10:30 to pick up her mother, sister and her sister's two kids from the airport, drop them off at the house, and then head back to finish out chemo with me. I should be done around 3:30, I think.
Happy thoughts and good vibes welcome.
Wednesday, July 5
The Skinny on the SCT
Alrighty. Lorraine and I went yesterday to The Blood and Marrow Transplant Center of Georgia, which will perform my stem cell transplant through Northside Hospital in Atlanta. After going over my physical/health background with the Nurse Practioner, we spent about an hour and a half with the fellow who will be my primary SCT doc.
The long and the short of it is that he wants me to start right away. As in this week. First I have get my esophogas dilated (a procedure I need regularly now as a result of having drunk lye as a child) and then I have to get another port-a-cath put in. I have to decide whether I want to go directly for the apheresis catheter (which looks like an octopus hanging out of your chest, apparently,) or first get the completely implanted type of port (like I had last year) for the chemo I'll get over a couple of months prior to the SCT and then put in the apheresis catheter right before I'll need it. I'm leaning towards the latter, because the apheresis cath is much higher maintenance (dressing changes, etc.) and it would prohibit me from swimming in the pool or taking a bath. Of course, this plan of putting in two different types involves adding two more scars to the collection on my chest instead of one....but I'd rather have a better quality of life leading up to the SCT.
I should probably back up and give a more detailed explanation of the actual stem cell transplantation procedure than I have. If you click here, you'll hear a great synopsis of the thing from someone with non-Hodgkins who also had an SCT. There have been a couple of advancements since his experience, but his explanation will give you a great idea of what I'm to experience. (Big wave going out to my dear friends Michie and Ginger. ;) )
Here it is in a nutshell:
1. Induction Phase/Salvage Chemo. The purpose of this is to get rid of as much of the existing cancer as possible. The goal, of course, is remission, but we'll proceed even if some cancer is still present -- but the better I respond to this salvage chemo, or "conditioning chemo" the better my long term prognosis. How I respond to this chemo will tell us more about my survival than anything else, so the goal really IS to achieve complete remission. There are different kinds of salvage chemo, but the one I'll probably be doing is called ICE, an acronym for the drugs Ifosfamide, Carboplatin, and Etoposide. During this induction phase, I will have two cycles of this before beginning to the SCT process, at which point I'll have a third cycle.
2. Mobilization/Harvest Phase. After getting some tests to ensure that I'm healthy enough to withstand treatment, Lorraine and I will get some training on how to care for me during the upcoming SCT stages, and then I'll get that third cycle of ICE, followed by numerous Neupogen shots, to put my marrow into overdrive so I have the maximum number of stem cells to harvest. During the harvest, I'll get hooked up to a machine which will suck out my blood, extracting just the stem cells, and then sending the rest back into me. Then they'll sort through the stem cells to make sure that they're saving only those that are cancer-free. What we're doing here is saving the maximum number of clean stem cells so that, after I've been pummeled all to hell by the high dose chemo, they can put those stem cells back in so I am able once again to withstand infection and fight the cancer and other evils. The high dose chemo would kill those stem cells and likely kill me if these healthy stem cells couldn't be reintroduced afterwards, because it will just destroy my marrow, rendering it unable to reproduce the stem cells which will grow into healthy white blood cells, red blood cells, and more. So the apheresis process is really a life-saving measure.
3. Conditioning Phase/High Dose Chemo. At this time, they'll hammer me with high dose chemo (most likely busulfan) which will first be delivered orally, then intravenously. Fun stuff! The purpose at this time is to completely wipe out my immune system so that when they deposit those nice healthy stem cells we'll be starting with a clean slate.
4. Engraftment Phase. I'll sit in a room hooked up to a machine which will pump those juicy stem cells back into my bloodstream. Apparently this is quite an odiferous affair, with the pungent odor reported as either very, very garlicky, or exactly like creamed corn. Yummy! The next several weeks are supposed to be the most hellish, with pain and misery aplenty. The advice I've gotten from others who've experienced this is to make morphine my friend and make no effort to remember any of it.
The day the stem cells are pumped back into me is called Day 0. From Day 0 through Day 20, I'll be getting IV fluids, painkillers, and more with the goal of getting my counts up to normal around Day 20. At this point, I'll be safe to go outside and mingle with my fellow humans. My activities will be somewhat restricted, and my physical abilities will be at close to nothing, but I won't be at such risk of infection.
The timeline for this whole thing is pretty much 2 months of salvage chemo, another 2-4 weeks of mobilization/conditioning chemo, then a month for the SCT itself. Then months of recovery.
The mortality rate of this procedure is less than 5%. The success rate, depending on who you ask, is either 50% or, as my primary SCT doc says, 50-70%. Again, the key to long term success is a great response to the induction chemo. He said that two good things were present in my case: one, my relapse is localized (in one area only) and two, I don't have any B symptoms (which indicate more aggressive or advanced disease.)
I hope this explains the process better for those who've been wondering what the heck all of this means. I suggest you check out this guy's experience with it for an explanation of his experience.
I'm supposed to hear from my oncologist today with info on the next step.
The long and the short of it is that he wants me to start right away. As in this week. First I have get my esophogas dilated (a procedure I need regularly now as a result of having drunk lye as a child) and then I have to get another port-a-cath put in. I have to decide whether I want to go directly for the apheresis catheter (which looks like an octopus hanging out of your chest, apparently,) or first get the completely implanted type of port (like I had last year) for the chemo I'll get over a couple of months prior to the SCT and then put in the apheresis catheter right before I'll need it. I'm leaning towards the latter, because the apheresis cath is much higher maintenance (dressing changes, etc.) and it would prohibit me from swimming in the pool or taking a bath. Of course, this plan of putting in two different types involves adding two more scars to the collection on my chest instead of one....but I'd rather have a better quality of life leading up to the SCT.
I should probably back up and give a more detailed explanation of the actual stem cell transplantation procedure than I have. If you click here, you'll hear a great synopsis of the thing from someone with non-Hodgkins who also had an SCT. There have been a couple of advancements since his experience, but his explanation will give you a great idea of what I'm to experience. (Big wave going out to my dear friends Michie and Ginger. ;) )
Here it is in a nutshell:
1. Induction Phase/Salvage Chemo. The purpose of this is to get rid of as much of the existing cancer as possible. The goal, of course, is remission, but we'll proceed even if some cancer is still present -- but the better I respond to this salvage chemo, or "conditioning chemo" the better my long term prognosis. How I respond to this chemo will tell us more about my survival than anything else, so the goal really IS to achieve complete remission. There are different kinds of salvage chemo, but the one I'll probably be doing is called ICE, an acronym for the drugs Ifosfamide, Carboplatin, and Etoposide. During this induction phase, I will have two cycles of this before beginning to the SCT process, at which point I'll have a third cycle.
2. Mobilization/Harvest Phase. After getting some tests to ensure that I'm healthy enough to withstand treatment, Lorraine and I will get some training on how to care for me during the upcoming SCT stages, and then I'll get that third cycle of ICE, followed by numerous Neupogen shots, to put my marrow into overdrive so I have the maximum number of stem cells to harvest. During the harvest, I'll get hooked up to a machine which will suck out my blood, extracting just the stem cells, and then sending the rest back into me. Then they'll sort through the stem cells to make sure that they're saving only those that are cancer-free. What we're doing here is saving the maximum number of clean stem cells so that, after I've been pummeled all to hell by the high dose chemo, they can put those stem cells back in so I am able once again to withstand infection and fight the cancer and other evils. The high dose chemo would kill those stem cells and likely kill me if these healthy stem cells couldn't be reintroduced afterwards, because it will just destroy my marrow, rendering it unable to reproduce the stem cells which will grow into healthy white blood cells, red blood cells, and more. So the apheresis process is really a life-saving measure.
3. Conditioning Phase/High Dose Chemo. At this time, they'll hammer me with high dose chemo (most likely busulfan) which will first be delivered orally, then intravenously. Fun stuff! The purpose at this time is to completely wipe out my immune system so that when they deposit those nice healthy stem cells we'll be starting with a clean slate.
4. Engraftment Phase. I'll sit in a room hooked up to a machine which will pump those juicy stem cells back into my bloodstream. Apparently this is quite an odiferous affair, with the pungent odor reported as either very, very garlicky, or exactly like creamed corn. Yummy! The next several weeks are supposed to be the most hellish, with pain and misery aplenty. The advice I've gotten from others who've experienced this is to make morphine my friend and make no effort to remember any of it.
The day the stem cells are pumped back into me is called Day 0. From Day 0 through Day 20, I'll be getting IV fluids, painkillers, and more with the goal of getting my counts up to normal around Day 20. At this point, I'll be safe to go outside and mingle with my fellow humans. My activities will be somewhat restricted, and my physical abilities will be at close to nothing, but I won't be at such risk of infection.
The timeline for this whole thing is pretty much 2 months of salvage chemo, another 2-4 weeks of mobilization/conditioning chemo, then a month for the SCT itself. Then months of recovery.
The mortality rate of this procedure is less than 5%. The success rate, depending on who you ask, is either 50% or, as my primary SCT doc says, 50-70%. Again, the key to long term success is a great response to the induction chemo. He said that two good things were present in my case: one, my relapse is localized (in one area only) and two, I don't have any B symptoms (which indicate more aggressive or advanced disease.)
I hope this explains the process better for those who've been wondering what the heck all of this means. I suggest you check out this guy's experience with it for an explanation of his experience.
I'm supposed to hear from my oncologist today with info on the next step.
Sunday, July 2
SCT Doctor Tomorrow
As you know, I got the SCT news from my onc and Dr. Armitage on Thursday afternoon. Friday, when I was at work, I got a voicemail from the Blood and Bone Marrow Transplant folks telling me to be there Monday morning at 11:45. When I called to try to arrange it for another day of the same week because Lorraine was having such a hard time getting off work that day, they told me that I'd have to go into the next week and that they'd already heard from my oncologist that I didn't have a week to spare and that I really needed to make this Monday happen. I had been holding on pretty well until I heard that.
So Monday at 11:45 it is --- and Lorraine will be there. I'm told I'll be there for 3 hours, 2 of which will be spent with the SCT doc. Afterwards, I'll meet with the coordinator, who will, I guess, coordinate the next steps. I know I'll have to have a PFT and an ECG to confirm that my lungs and heart are able to withstand treatment (I know they're fine) and then I'm sure I'll be on to another port implantation and maybe a double bone marrow biopsy? If I'm to have a double BMB, I'm going to request that they perfom it at the same time they put in the port, so I'm sedated, as my last experience was pretty excruciating. Tomorrow I'll see about getting a prescription for Wellbutrin and another for Ativan, to address the emotions and anxiety I'm experiencing. Something to sort of "warm the waters" into which I am now leaping, as it were.
Yesterday Lorraine and I bought a bunch of furniture for our new (larger!) home today -- that interest-free, no payments till 2008 option is much appreciated! It was half retail therapy and half an effort to get our new home prepared for the SCT chapter and beyond, when I won't have as much energy for, or interest in, interior design. I think for Lorraine it was important to feel that since I'm now going to be entering of being sort of housebound, the house will be prettier and much more comfortable for me. She's such a sweet, sweet woman, my Lorraine. I'm so lucky.
We were terrified about the financial impact of this, since I'll be out of work for a while and we'll have to carry my $400/month COBRA payment. (And THANK GOD for that excellent coverage -- while my maximum out of pocket increased to 8 grand, there's still no ceiling on the insurance company's payout for my care.) I'm going to get up on my soapbox here and say that I find it absolutely abhorrent that, after 8 years together, Lorraine is unable to include me in her (excellent) medical coverage because we happen to be a 2-vagina couple. Sorry if that offends, but it (and a laundry list of other inequalities) really burn me. At any rate, I fully intend to utilize all resources at the Blood and Bone Marrow Transplant Center to get all the financial help I can get. I'm thinking Social Security Disability (unless my defaulted student loans put the kabosh on that) and welfare, if it's necessary and not too hard for me to get. Lorraine is going to take a bunch out of her 401(k) so we can afford to stay in our new home. We're a 2-income family, but really, we could still manage to pull it off if we didn't have the COBRA payment in addition to both our share of the upcoming medical/prescription costs and the additional expense of all the travel to and fro to treatments/appointments, etc. I know the Lymphoma Research Foundation will give $500, but that's just the tip of the iceburg.
Interestingly enough, "tip of the iceburg" is exactly the expression my onc used when explaining why this 3.6 x 3.9 cm supraclavicular mass is heading me into an SCT. Life is pretty freaking crazy, isn't it?
I am very grateful for my blessings, and I know that Lorraine and I will get through this. I've been trying to prepare her for what lies ahead, but she hasn't been ready. I want her to know a lot more than she does before Monday tomorrow's appointment, because I don't want her experience to be all emotion and less learning. I want to prepare her a bit, so she has some idea of what she wants to know more about, and doesn't leave raw and wondering how the hell it's all going to happen. I'll be pretty raw myself, I anticipate, and I've been doing my homework!
Anyway, I wanted you all to know that I'm ok, overall. I'm all kinds of things in addition to that -- but I'm holding on. I feel anxious about how it's all going to happen and the timeline and all that, but all that will be revealed on Monday, I'm sure.
So Monday at 11:45 it is --- and Lorraine will be there. I'm told I'll be there for 3 hours, 2 of which will be spent with the SCT doc. Afterwards, I'll meet with the coordinator, who will, I guess, coordinate the next steps. I know I'll have to have a PFT and an ECG to confirm that my lungs and heart are able to withstand treatment (I know they're fine) and then I'm sure I'll be on to another port implantation and maybe a double bone marrow biopsy? If I'm to have a double BMB, I'm going to request that they perfom it at the same time they put in the port, so I'm sedated, as my last experience was pretty excruciating. Tomorrow I'll see about getting a prescription for Wellbutrin and another for Ativan, to address the emotions and anxiety I'm experiencing. Something to sort of "warm the waters" into which I am now leaping, as it were.
Yesterday Lorraine and I bought a bunch of furniture for our new (larger!) home today -- that interest-free, no payments till 2008 option is much appreciated! It was half retail therapy and half an effort to get our new home prepared for the SCT chapter and beyond, when I won't have as much energy for, or interest in, interior design. I think for Lorraine it was important to feel that since I'm now going to be entering of being sort of housebound, the house will be prettier and much more comfortable for me. She's such a sweet, sweet woman, my Lorraine. I'm so lucky.
We were terrified about the financial impact of this, since I'll be out of work for a while and we'll have to carry my $400/month COBRA payment. (And THANK GOD for that excellent coverage -- while my maximum out of pocket increased to 8 grand, there's still no ceiling on the insurance company's payout for my care.) I'm going to get up on my soapbox here and say that I find it absolutely abhorrent that, after 8 years together, Lorraine is unable to include me in her (excellent) medical coverage because we happen to be a 2-vagina couple. Sorry if that offends, but it (and a laundry list of other inequalities) really burn me. At any rate, I fully intend to utilize all resources at the Blood and Bone Marrow Transplant Center to get all the financial help I can get. I'm thinking Social Security Disability (unless my defaulted student loans put the kabosh on that) and welfare, if it's necessary and not too hard for me to get. Lorraine is going to take a bunch out of her 401(k) so we can afford to stay in our new home. We're a 2-income family, but really, we could still manage to pull it off if we didn't have the COBRA payment in addition to both our share of the upcoming medical/prescription costs and the additional expense of all the travel to and fro to treatments/appointments, etc. I know the Lymphoma Research Foundation will give $500, but that's just the tip of the iceburg.
Interestingly enough, "tip of the iceburg" is exactly the expression my onc used when explaining why this 3.6 x 3.9 cm supraclavicular mass is heading me into an SCT. Life is pretty freaking crazy, isn't it?
I am very grateful for my blessings, and I know that Lorraine and I will get through this. I've been trying to prepare her for what lies ahead, but she hasn't been ready. I want her to know a lot more than she does before Monday tomorrow's appointment, because I don't want her experience to be all emotion and less learning. I want to prepare her a bit, so she has some idea of what she wants to know more about, and doesn't leave raw and wondering how the hell it's all going to happen. I'll be pretty raw myself, I anticipate, and I've been doing my homework!
Anyway, I wanted you all to know that I'm ok, overall. I'm all kinds of things in addition to that -- but I'm holding on. I feel anxious about how it's all going to happen and the timeline and all that, but all that will be revealed on Monday, I'm sure.
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