Tomorrow morning, on my 26th day as an inpatient on the Bone Marrow Transplant Unit at Roswell Park Cancer Institute, I will be discharged!!! It's 99% certain which is as close to 100% you'll ever get from a doctor.
Thank you, thank you for your prayers and support. This process is not over for me, but this is a huge and welcome obstacle cleared.
Please pray that I will never be admitted here again. Please pray that I can leave this behind and raise my babies with the love of my life and tap dance into old age with him.
Please pray for my husband and kids. I'm still not going home...I'll be at my Mom and Dad's for 2 weeks. These 2 weeks are critical in ensuring that I don't end up readmitted. This is the best decision, but it is a very difficult one. We'll be able to see each other as much as we want, but they just want Mommy home. Mommy just wants Mommy home too.
Pray for my Dad who will be in charge of my care and supervision for the next 2 weeks. If anyone can snap this patient into shape it's him. He's going to be in charge of my meds, making sure I'm exercising, monitoring my symptoms, and taking me to my appointments. He's also going to be in charge of getting me to gain back the 10 pounds I've lost.
Please offer a prayer of thanksgiving for my husband who was nothing short of heroic during this time, for my Mom and Dad, for my In-Laws, for many dear friends and loved ones who supported us with prayers and meals and rides to swim lessons.
Please offer a prayer of thanksgiving for the Doctors, Nurses, Health Care Aides, Nurse Practitioners, and everyone who cares for the transplant patients on 5 East at Roswell Park Cancer Institute with great compassion and skill.
When I was 19 weeks pregnant with my 6th child I was diagnosed with Hodgkin's Lymphoma. I started Chemotherapy during pregnancy and we lived to tell the tale! But now the cancer is back. BOO! I'm having an Autologous Bone Marrow Transplant to get rid of it once and for all. So, um, yeah. This is my attempt to process it.
Sunday, August 24, 2014
Thursday, August 21, 2014
Day +13: Sometimes You Just Cry
*The management makes no promises for coherence, grammar, or punctuation.
I'm kind of a crier. I cry a lot. Happy, sad, mad, relieved, undecided....cry, cry, cry, cry, cry. I cry enough over random stuff that now if my 10 year old son finds me crying about something and I start to tell him not to worry he kind of rolls his eyes and says "I know, Mom, sometime ladies just cry."
I try really hard at the hospital to not cry at all. I try very hard to be super special patient that causes zero trouble. I say thank you for every pill, every IV pump reset and I say sorry for every single gross thing such as puking. I apologize between pukes as though they'd assume it's my hobby and I just decided to fit in some recreational puking right now and I regret I've inconvenienced them with my poor timing. I need them to know I did not want to cause puke for them to handle. I wish I had a stack of $5 bills on my tray to hand out every time I have to push the call button. I HATE pushing the call button. I basically only push the call button when my IV is beeping because I know if I let it go they'll say "why'd you do that". Anyway, I try to be sunshiney patient in their day and yesterday I was an epic fail.
Yesterday was day +12, or 12 days since my transplant. I cried all day yesterday. All. day. long. Did I get some bad news? Nope. Great news. Yesterday was the day my Absolute Neutrophil Count was almost where it needed to be for us to tentatively maybe discuss, barring any unforeseen bumps in the road, the possibility of me being discharged at some point. Possibly. (It's hard for doctors to commit to anything). Today the news was even better. My Absolute Neutrophil count needed to be greater than 1.5 and it's 1.76. They're giving me one more growth factor shot to keep things jumping up and hopefully after today I'll get a break from them. They make me very achy. I might even get unhooked from my IV's tomorrow. It's awesome. I might even go home sometime next week.
But I spent all day yesterday just crying and crying. I just want to go home. I just want to walk around with out dragging an IV pole everywhere I go. I want to see my kids. They've visited once and I was so happy to see them and they were happy to see me, but they each only got to visit with me for 3-5 minutes because there can only be 2 visitors in the room at a time and the people who weren't with Mommy had to be entertained in the waiting room. I can't help but wonder how that feels to a kid, to not see their Mommy for nearly 2 weeks, then see her for literally less than 5 minutes, and then leave. I can't think about it much because I know what it did to me. It hurt like hell to watch them leave. It hurt like hell to see their eyes darting around the room and taking inventory of "Everything they're doing to Mommy". It hurt like hell to not just scoop them up and hug them properly because we have to be careful of my lines. So anyway, yesterday I was a total sad sack loser. I barely walked any laps, I just sat around crying. If it weren't for my Dad coming to visit I wouldn't have done any.
Even now, when things continue to look up in very concrete ways and I'll be home sooner rather than later, I'm on the edge of tears. I try really hard with the Medical Types to be super cheerful and courteous at all times. Their job is really hard and the last thing they need to deal with is Mrs. Weepy McWeeperson. Plus I'm paranoid that if they see my runny nose from crying they'll assume it is microbe related and ruin everything by making me stay longer. No way.
I'm pretty mad at myself for crying. Things could be so much worse. I carry a lot of shame about the privileged life I lead, but today, I'm just going to say this is hard. It really stinks. I don't feel like doing this anymore.
Anyhoo, despite the whining and crying, 13 days out from the transplant, there is progress being made on multiple fronts and I am grateful for it, truly. I still wish it never happened and sometimes when you carry something this big, you're just gonna cry.
Day +13 ended up much better than I expected when I started writing this. There are lots of good things happening today and there is a light at the end of the tunnel.
In case you'd like to know just how easy it is to make me cry with even the weirdest things...
Go to this link and understand that EVERY TIME I watch it I start tearing up by :44 and full on cry the rest of the time
I realize cool kids embed videos. I just didn't have it in me. But seriously you guys? That video makes me ugly cry EVERY time. That video is 3 years old. Perdiodically for 3 years I have revisited this video to see if I am free from it's clutches and can be considered marginally sane again and I CANNOT. I cry everytime.
So there ya have it, sometimes I cry about cancer. Sometimes I cry about Lester Holt holding up a cardboard TV cut out and some intern getting to bust out her backyard backhandspring on asphalt for the Today Show. That's a lotta range.
I'm kind of a crier. I cry a lot. Happy, sad, mad, relieved, undecided....cry, cry, cry, cry, cry. I cry enough over random stuff that now if my 10 year old son finds me crying about something and I start to tell him not to worry he kind of rolls his eyes and says "I know, Mom, sometime ladies just cry."
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| In the car, when there is ANY country music playing except Luke Bryan, if I see a really great bird, almost EVERY time I see my husband, if I think one year--sometimes one month ahead in my children's lives.....etc. |
I try really hard at the hospital to not cry at all. I try very hard to be super special patient that causes zero trouble. I say thank you for every pill, every IV pump reset and I say sorry for every single gross thing such as puking. I apologize between pukes as though they'd assume it's my hobby and I just decided to fit in some recreational puking right now and I regret I've inconvenienced them with my poor timing. I need them to know I did not want to cause puke for them to handle. I wish I had a stack of $5 bills on my tray to hand out every time I have to push the call button. I HATE pushing the call button. I basically only push the call button when my IV is beeping because I know if I let it go they'll say "why'd you do that". Anyway, I try to be sunshiney patient in their day and yesterday I was an epic fail.
Yesterday was day +12, or 12 days since my transplant. I cried all day yesterday. All. day. long. Did I get some bad news? Nope. Great news. Yesterday was the day my Absolute Neutrophil Count was almost where it needed to be for us to tentatively maybe discuss, barring any unforeseen bumps in the road, the possibility of me being discharged at some point. Possibly. (It's hard for doctors to commit to anything). Today the news was even better. My Absolute Neutrophil count needed to be greater than 1.5 and it's 1.76. They're giving me one more growth factor shot to keep things jumping up and hopefully after today I'll get a break from them. They make me very achy. I might even get unhooked from my IV's tomorrow. It's awesome. I might even go home sometime next week.
But I spent all day yesterday just crying and crying. I just want to go home. I just want to walk around with out dragging an IV pole everywhere I go. I want to see my kids. They've visited once and I was so happy to see them and they were happy to see me, but they each only got to visit with me for 3-5 minutes because there can only be 2 visitors in the room at a time and the people who weren't with Mommy had to be entertained in the waiting room. I can't help but wonder how that feels to a kid, to not see their Mommy for nearly 2 weeks, then see her for literally less than 5 minutes, and then leave. I can't think about it much because I know what it did to me. It hurt like hell to watch them leave. It hurt like hell to see their eyes darting around the room and taking inventory of "Everything they're doing to Mommy". It hurt like hell to not just scoop them up and hug them properly because we have to be careful of my lines. So anyway, yesterday I was a total sad sack loser. I barely walked any laps, I just sat around crying. If it weren't for my Dad coming to visit I wouldn't have done any.
Even now, when things continue to look up in very concrete ways and I'll be home sooner rather than later, I'm on the edge of tears. I try really hard with the Medical Types to be super cheerful and courteous at all times. Their job is really hard and the last thing they need to deal with is Mrs. Weepy McWeeperson. Plus I'm paranoid that if they see my runny nose from crying they'll assume it is microbe related and ruin everything by making me stay longer. No way.
I'm pretty mad at myself for crying. Things could be so much worse. I carry a lot of shame about the privileged life I lead, but today, I'm just going to say this is hard. It really stinks. I don't feel like doing this anymore.
Anyhoo, despite the whining and crying, 13 days out from the transplant, there is progress being made on multiple fronts and I am grateful for it, truly. I still wish it never happened and sometimes when you carry something this big, you're just gonna cry.
Day +13 ended up much better than I expected when I started writing this. There are lots of good things happening today and there is a light at the end of the tunnel.
In case you'd like to know just how easy it is to make me cry with even the weirdest things...
Go to this link and understand that EVERY TIME I watch it I start tearing up by :44 and full on cry the rest of the time
I realize cool kids embed videos. I just didn't have it in me. But seriously you guys? That video makes me ugly cry EVERY time. That video is 3 years old. Perdiodically for 3 years I have revisited this video to see if I am free from it's clutches and can be considered marginally sane again and I CANNOT. I cry everytime.
So there ya have it, sometimes I cry about cancer. Sometimes I cry about Lester Holt holding up a cardboard TV cut out and some intern getting to bust out her backyard backhandspring on asphalt for the Today Show. That's a lotta range.
Thursday, July 31, 2014
Day -8, Signing Consents, Mental Refiling
Day -8
Welp. I'm here. All hooked up to drug numero uno. Etoposide for 30 hours. I'm getting three different chemos over 6 days. Yuck. Today is day -8 (minus 8), which means I'll get my actual transplant in 8 days. The day I get my cells back is Day 0 and every day after that is +1, +2, etc., until I get to day +100, which will be a huge milestone for me. I've realized when explaining my treatment to people in real life that it's kind of confusing so I'm going to explain this phase more clearly. First and foremost, it's important to know:Bone Marrow Transplant Vs. Peripheral Blood Stem Cell Transplant
In a Bone Marrow Transplant they actually put you under and drill out Bone Marrow from your hips or from a donor. I'm having a Peripheral Blood Stem Cell Transplant where they gave me growth factor shots and harvested stem cells from my blood stream using and Apheresis Machine. Both of these treatments are called Bone Marrow Transplants interchangeably. The kind I'm getting is much less risky since they're my own cells and bonus! no drilling. During my last go round with Lymphoma I read about transplants but I filed it under "Doesn't Apply To Me" in my mind because, seriously, who ever thinks something like that will apply to them? The whole thought process took about 30 seconds after I read about it: Step 1- decide it doesn't apply to me, Step 2- totally sanitize the reality of what I've just read because it doesn't apply to me, Step 3- file under "doesn't apply to me" which is just next to the circular file in my brain.
Signing Consents Kills The Romance
So, now I've had to dust off that file and put it back under "Applies To Me" which is cross referenced with "Reality Bites (not the movie)". Obviously, at no time since they told me this was happening was I happy about it. But once I got going it seemed a bit romantic in a way...using my own cells...to cure me! How human and sciency and just nice. Don't get me wrong, it is nice. It's just not as romantic as it sounds. My transplant is really a rescue. My cells aren't really curing my cancer. I'm already in remission. Again. I need this transplant because the best chance at keeping my cancer from coming back is to blast my Bone Marrow to kingdom come using extremely high doses of extremely powerful chemotherapy. I get 6 days of it. The Etoposide I told you about, Cyclophospamide, whose evil twin I've already had, and Carmustine. This Chemo is going to completely destroy my bone marrow. All of it. It is going to completely destroy the source of my red blood cells, white blood cells, and platelets. It is going to destroy me. We need to wipe it all out in the hopes that any little bit of my cancer that is hiding will also be wiped out. Without intervention following these 6 days of chemo, I would die. I would die of some kind of infection, or I would bleed to death. I would die. The stem cells that were collected are being used to rescue me from my treatment. For a short time, I will be mostly dead.
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| This is a TAD dramatic. Only a TAD. |
The reality of this sunk in slowly as I explained the procedures to others, although in my mind it continued to have that sanitized soft focus sheen of "can't possibly apply to me" even though I knew I was describing my own treatment. What really killed any romance in the idea of being "saved by my cells" was signing the consent forms for my treatment. In bold on several pages it said "1 in 20" patients will not survive this treatment. I've signed a Health Care Proxy and Advanced Directives. I will survive this treatment of course. 1 in 20 doesn't really mean me because that includes 4 year olds and 80 year olds and people who are not in remission before transplant so obviously that won't be me. That doesn't soften the impact of signing all that paperwork and having to write out in black and white "I am a Roman Catholic, if my death is imminent, please call a priest so that I can receive the sacraments." It doesn't take the bite out of knowing I'm letting them putting something in me that would kill me without dramatic intervention. After they put my cells back, I'll get blood products and antibiotics until such time as it appears my bone marrow is chugging along, producing what I need on its own again. For now I'm hunkering down and doing everything I can to be a good patient.
Thank you for your prayers, and if you can, please continue them. Please pray most especially for Michael and the kids. God's will for them is God's will for me.
Thursday, July 24, 2014
Overachieving In Stem Cell Collection (Robert and Peter Do Not Look At This Post)
*There are photos of a medical nature in this post. If you are squeamish this might not be for you...hence the disclaimer for my brothers.
Last Friday I started getting shots called Filgrastim to make my bone marrow produce tons and tons of stem cells. I had them Friday, Saturday, Sunday, Monday, Tuesday, and Wednesday morning. On Monday I started another shot, called Mozobil, which actually forces all the stem cells that my bone marrow produced out into my bloodstream so that they can be collected. The thing you should know about Mozobil is that they INJECT IT INTO YOUR TUMMY!!!! But that turned out to be not a big deal. I might ask to get all my shots that way from now on. I know. I'm shocked by this turn of events. Before this if you'd told me I was getting an injection in my stomach I would have told you that if you tried it you'd be getting an injection in your eye. I'm really not kidding though, shots in the stomach don't hurt as much as shots in the arm or your rear end. Promise.
Last Friday I started getting shots called Filgrastim to make my bone marrow produce tons and tons of stem cells. I had them Friday, Saturday, Sunday, Monday, Tuesday, and Wednesday morning. On Monday I started another shot, called Mozobil, which actually forces all the stem cells that my bone marrow produced out into my bloodstream so that they can be collected. The thing you should know about Mozobil is that they INJECT IT INTO YOUR TUMMY!!!! But that turned out to be not a big deal. I might ask to get all my shots that way from now on. I know. I'm shocked by this turn of events. Before this if you'd told me I was getting an injection in my stomach I would have told you that if you tried it you'd be getting an injection in your eye. I'm really not kidding though, shots in the stomach don't hurt as much as shots in the arm or your rear end. Promise.
In related news on Tuesday Michael bought me some new bling.
I had a double lumen catheter placed for the stem cell collection and I will tell you what--you get the red carpet treatment when you're a Bone Marrow Transplant patient. When they placed my port I had to wait in a waiting room and then wait in another pre-op area where they had everyone waiting in beds in stalls and when it was your turn they wheeled you in. I did also need some sedation for that one because they mess you up a lot more to get the port in since it's totally under your skin. Well, for this one they just walked me right into the operating room or procedure room or whatever they call it and I hopped on the bed myself. I got all arranged and thought they were still doing all my numbing shots and the guy was like "Ok, 2 quick stitches and you're done." Wow. That was easy. It felt tight and weird where it was and I couldn't wait to get it out, but it wasn't too big of a deal. Anyway, they used that to hook me up to an Apheresis machine that collects my stem cells. I'm hooked up for 4 hours, it's pretty easy except that you can't move it around like an IV pole so if you have to use the restroom you have to just hold it. Actually, if you have to use the restroom there is a commode, so...I have to hold it. I just do. Luckily I didn't have to live under the threat of the commode for long. I'm a stem cell overachiever. The goal for me was to collect 2-5 million cells per pound of my body weight and the first day they got 6 million and change. Nailed it.
I had to be collected one more day to be absolutely sure we have enough. Yesterday I finished that and had my line removed which is really nice. I have about 7 days untethered before they put another different line in for the BIG chemo and transplant. Why do they have to change lines? Well, the one for collection has to be really wide so that we don't damage any cells as they come out. This line has 2 lumens (or feathers, as I prefer to call them) just one for the blood to go out and one for it to come back in and it is not the coziest thing I've ever had sticking out of a hole in my chest. When I'm admitted I'll have a new catheter put in that has 4 or 5 feathers but it will be thinner and more flexible. That's thinking too far ahead right now. I took a pulmonary function test and as far as I know I did fine. I'm not too worried, last time I crushed it.
For the next 6 days, aside from some meetings at the hospital where nobody pokes me, I'll be resting and spending time with my family. Please pray for Michael and the kids, this is so hard on them.
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| He really spoils me. |
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| Aphere-sizing |
For the next 6 days, aside from some meetings at the hospital where nobody pokes me, I'll be resting and spending time with my family. Please pray for Michael and the kids, this is so hard on them.
Monday, July 21, 2014
Tales of Woe, Tales of Triumph And The Limits of bareMinerals
I'm gonna do the rest of this post in reverse chronological order or maybe just weird disjointed stream of consciousness order. Cut me some slack...I've got Chemo Brain over here. I'm sure there are more literary ways I could do a post in reverse chronological order and I'm pretty sure I would be capable of conjuring them up and executing them but that's too tall an order right now. So here we go, you know the first part, currently in remission and starting Phase 2 of treatment...
Tales of Woe:
Even though I'm supposed to be going in reverse chronological order you can't have a proper laugh at my expense if I don't tell you that exactly 2 weeks before this I passed out in the exact same spot, so when we came into the clinic this time I was joking around and talking a big game about how there'd "be no shenanigans." Thud. <---That's the sound of me falling off my high horse. AGAIN. I perked up from the apple juice and they let me go and then I was going to have lunch with Michael!!! I didn't really feel right but I thought I'd shake it off in the car, because this was the first time I'd seen Michael in a week and a half and I wasn't cutting it one minute short. We went to Wegmans and I was going to get Chinese Food but I thought better of it when I got there. I should have told Michael to take me home right then, but I powered through it because I missed Michael so much and I wasn't messing up our Bone Marrow Biopsy Date Goshdarnit!!!! I worked really hard at keeping my eyes open, eating my soup, and being conversational while we were at Wegmans and then poor Michael drove me home to my parents' house. Poor, long suffering, patient Michael. We got about 2/3 of the way there and suddenly I realized something was NOT RIGHT. VERY NOT RIGHT. Thank goodness we're not very good at keeping our vehicles tidy because I quickly located a bag and THREW UP IN THE CAR. Into the bag in the car but still. Ugh. It was really bad.
Michael pulled over and helped me and cleaned the whole thing up and put me in the back of the car where I'm pretty sure I promptly went to sleep. I hope I did. Otherwise I was super fun half conscious Nella who doesn't know how to just ZIP IT because there's nothing she can do to fix anything. Half conscious Nella would have been slurringly apologizing to Michael over and over and OVER and Michael would have been within his rights to wish half conscious Nella was straight up UNconscious. Michael is a gentleman and won't admit which one I was. We finally got back to my parents' house and Michael put me to bed, where I stayed for 5 hours. That night I ate some dinner. Threw it up. I slept hard the whole night and woke up to a revelation. Fentanyl and I are not friends. I might have had a hard time figuring this out except that I had the exact same pukey sleepy reaction to it when it was in my IV pain button after I had the biopsy on my lymph nodes a couple months back. They said "hey, no more Fentanyl for you we think it's making you sick." and I was like "no problem I hate it." I didn't remember the name of it because I thought it only came in pain buttons. I didn't know they give it out in lollipops because WHY WOULD I EVER THINK THAT!?!?!?. So Fentanyl is the devil and I hate it.
What other gross things have happened that I can tell you? OH! I'm part midwesterner now! I have one liter of red blood cells from Davenport, Iowa coursing through my veins, I also have one liter of locally sourced blood because I'm trendy like that. I also have one bag of platelets that are not my own as well. Oh my gosh you guys it is SO GROSS. Everyone acts like it's so casual: "Dum dee dum putting someone else's blood in you no biggie." but let me tell you it is NOT CASUAL. You can see the whole thing--you can see the bag of blood just hanging there on the IV pole being bloody, you can see the blood going through the line and INTO YOUR BODY--and I'm here to tell you it's disgusting. Miraculous, and smart, and life saving, and DISGUSTING.
So remember up there where I told you that Bone Marrow Biopsy day was the 2nd time I sent the nurses running for the emergency apple juice? Well, here's the story of the first time. You see, it turns out that IF you go and get chemo for three days straight and can't swallow anything because air is gross, water is gross, opening your eyes is gross, food is obviously gross, rolling over in bed is gross and almost impossible, etc., getting up at 6:30am the day after you are discharged to go back to the hospital so you can get blood drawn is not the best idea. I mean, you have to go back to the hospital for your lab check. They have to check your blood, but 7am is not the best time for it. You can't go get blood drawn if you haven't eaten anything in 24 hours. You definitely can't walk around the hospital unaided after having blood drawn and then wait in a waiting room when you JUST finished 3 days of chemo and haven't eaten for 24 hours, but this jackass typing right now thought she could. It was on the schedule so I thought I should.
I woke up that day, sort of. I ignored that I could only walk short distances without feeling lightheaded and that I had to sit(slump) on the toilet to do most of the getting ready. I managed to get dressed and put on my bareMinerals. I've written before about how much I love bareMinerals. LOVE. I put them on like armor (very sheer natural armor) before I head out in public (which is the hospital 95% of the time these days) so that everyone can exclaim over how "not sick" I look. Particularly at the hospital I feel like it's a subliminal message to everyone there about what abysmal fail-y failures they will be if they don't get me better. Overall, it works great. Unfortunately even bareMinerals have their limits. It turns out that if you turn gray (or grey), begin to sweat profusely, and then lose consciousness--bareMinerals can't hide that. Don't write angry letters to Leslie Blodgett. Essentially bareMinerals can't camouflage arrogance and stupidity. I'm sure they're working on it.
Luckily I turned gray (or grey), began to sweat profusely, and lost consciousness in my clinic where all the nurses know me. I ended up having to get fluids through my port and ended up breaking a streak I was pretty proud of. This was the first time I threw up as a cancer patient. As you learned in the tasteful missive you've just slogged through, it wasn't the last. I have a tendency to puke when they flush my line while using my port. I found out if I sniff an alcohol pad that sometimes I won't puke, so if you're a fellow cancer patient who forced yourself to read through all of this for useful information...sniffing alcohol pads when they flush your port might help you not puke. More importantly, if you're a cancer patient you just read through all of this looking for useful information, the alcohol pad tip is useful, but this one is more important:
Listen to what your body is telling you and stop being an arrogant stupidhead who thinks they can somehow will themselves into being impervious to the effects of their treatment. You'll end up saving yourself some humiliation and discomfort.
Tales of Triumph:
You know who I haven't told you about lately?  |
| Remember me? |
It's hard to believe that Avery Hope will be ONE YEAR OLD next week. It's hard to believe that baby was on board when I started my first treatment but it's true. She is doing great! She's a chubby little trouble maker as you can see. I'm amazed that just one year ago she couldn't eat, maintain her temperature, or BREATHE on her own. Look:
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| Chubby Trouble Maker |
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| Breathing, obviously eating well, and STANDING UP |
So, anyhoo, we keep plugging away, taking each day as it comes. We appreciate your prayers so much. Sometimes, truth be told, I feel pretty low, but I continue to be amazed at the peace and joy that can underlie even the yuckiest of circumstances. This situation stinks, but we are so incredibly blessed and surrounded by so much love.
How can I feel low for long when one of my oldest and dearest friends, Joelle, who is a doctor, wife, and mother of two small children is TRAINING FOR A MARATHON--THE MARTHON--the New York City Marathon actually, in my honor, to raise money for the The Leukemia & Lymphoma Society’s (LLS) Team in Training. Please consider supporting her. If she reaches her goal by August 1st, she and her husband will be donating $500 to Roswell Park Cancer Institute, which is where I'm being treated. Isn't she amazing? She could lose a toenail. Do you know that sometimes happens to marathon runners? *JOELLE* Please please do not lose a toenail. I can't have that on my conscience.
Tuesday, June 24, 2014
Fun with Weapons of Mass Destruction or Life on ICE
So I made it through Cycle 1 of the chemo that is preparing me for the Autologous Bone Marrow Transplant. Wow, it's tough. It's really really tough. It hits hard and it's gross. I'm actually back in the hospital for round 2 and at least I know what to expect this time. What I expect is this:
Day 1:
Easy. I actually came into the hospital in the evening this time and started my chemo at around 2am. This was only the second time my port has been accessed and it makes me really nervous. I took Ativan before I came to the hospital this time to chill me out a bit and to help me handle the taste of the saline when they flush my lines and it seemed to really help a lot. My actual chemo not including pre-meds (steroid, anti-nausea) was only a 2 hour bag so I was able to sleep pretty well, the nurses aids are great about doing my blood pressure, pulse ox, and temperature even if I'm asleep if they can get to my arm which is nice.
Day 2:
Easy. I was able to eat well, walk 33 laps around my wing (which equals a mile), have a wonderful visit with a very dear friend and 2 visits from my husband. I also took a shower and dressed in real clothes so I could visit with my friend OUTSIDE in the hospital courtyard which was so nice. Tonight I get all 3 of the chemo drugs in my protocol. One of them runs for 24 hours and it's difficult. Really difficult. It smells so bad, just when it hangs in the bag, before you're even hooked up. I'm not sure if I can taste it when I'm getting it but I'm pretty sure I can, even after I leave the hospital. Guess why it's so stinky...did you guess? It's derived from mustard gas. I know. A bunch of my "pharmaceuticals are the devil" readers just passed out. Anyway, I have to be hooked up to that from 5am to 5am. That's my fun with WMD. I also have the 2 hour bag I had last night and another 1 hour bag of something else. Which means day 3 isn't exactly a barn burner in the productivity department.
Day 3:
I'll be hooked up to the mustard gas all day and all night today. It will be gross and my appetite will suffer. I have to force myself to eat the best I can because last cycle I lost a lot of weight. I lost about 7 pounds, which I really don't have room to lose. I rallied in the following weeks, but I didn't manage to get it all back before I came back here to start the new cycle. It' really important that I maintain my weight to the best of my ability in order to give myself every advantage going into the transplant because I'll definitely lose weight when I start that super chemo and the ensuing process. At my hospital there is Mass at noon on Wednesdays so I will be going. By the time I get back my day is pretty much over. I get in bed and I'm pretty useless.
Day 4:
Today I pack up my stuff, get cleaned up, and wait to be discharged. When I get home I go to bed and I sleep almost solid until day 6 or even into Day 7. I get up to (hopefully) eat, drink water, and use the bathroom.
Day 5:
I forgot to say that on Day 5 I go to the hospital to get a Neulasta shot. It's really hard to go to the hospital because I'm so tired. I get home and day over and like I mentioned above under Day tomorrow and possibly the next day over.
Day 7:
Hopefully I wake up this morning and can get out of bed to go to Doughnut Party at my parents as long as nobody is sick. I get to sit at the table with my family and possibly eat a bit of toast. Then I go home and straight back to bed. I still mostly sleep, but I'm getting into a weird status where I'm to weak to sit up or move but my mind is very awake. I end up watching a lot of TV on my computer.
Day 8:
Back to the hospital today for bloodwork. I spend the whole time praying that I don't need a transfusion. Unfortunately this cycle it won't be a question of if, but when. Blech. Then I hopefully go home, go back to bed. I try to read to the kids in short spurts while I have enough energy.
Day 9-12:
I alternate between hospital free days and hospital days for blood work. I get a bit more energy each day but all that means at this point is that my eyes are open more than they're closed and the kids can come in my room more if they're healthy, they've changed their clothes, and washed their hands. My appetite is beginning to improve and I don't require Zofran to control my nausea anymore.
Day 13:
Watch out! I spend most of the day sitting up in the DOWNSTAIRS OF THE HOUSE as long as everyone is healthy. I even eat some of my meals in the kitchen with my family.
Day 14:
Back to my parents' house for Doughnut Party, more sitting up like a person and even walking around a bit. I beginning to get a tad full of myself. My appetite is improving but I still have to get into bed by 6:30 pm or so.
Day 15:
I am now officially big for my britches (figuratively) and have commenced doing more than I should because I'm feeling guilty and I'm losing my mind. I still have to lay down quite a bit. I've also been told that this time around I need to do even less. Boy oh boy. I continue to visit the hospital every other day for blood work.
This continues until I have to come back to the hospital. This time around it was for my 2nd cycle of chemo, I came back on Day 22, which resets to Day 1. After I finish this cycle, God willing I will begin the transplant process.
Other Stuff
I lost my hair. I mean really, really lost it. It started to go this past Wednesday and by Saturday I had so many totally bald bald spots that Michael had to buzz it for me. It took me so much by surprise because last time it took so long to finally begin to fall out and then when it did, while quite a bit came out and I had to buzz it, it never came out in huge totally bald patches. I mean I would run my hand through my hair and it was like a bunch of gorgeous Italian babies first haircuts were caught between my fingers. My pillow was absolutely coated. It was gross. So Michael buzzed me and now I have a few very small patches of stubble, each about the size of quarter, all floating in a see of pale smooth scalp that has never seen the sun.
My goals for tomorrow (Cycle Day 3):
1. Shower and wear my bareMinerals.
2. Wear real clothes and not pajamas until after Mass (around 1pm)
3. Pray in the morning and evening.
4. Possibly walk 33 laps if I can do it before Mass (this may be ill advised, we'll see)
5. Visit with some friends in the afternoon.
6. Eat appropriately.
So that's it, an update and a "what to expect" for any cancer patients getting ICE chemo who may visit hear.
I have a few quick requests for you:
1. My brother in law Nate is participating in the Ride for Roswell, which is a wonderful fundraiser for Roswell Park Cancer Institute, the hospital where I'm being treated. He is dedicating his ride to me and my family. I'm humbled. His fundraising page can be found here. If you are able and feel moved to do so, please send a few bucks his way. It is a very worthy cause.
2. Local friends have asked about donating blood and platelets for use in my treatment. Last cycle I made it without transfusions of any kind but this time I'll definitely need at least one. If you are local and would like to donate blood or platelets please go here, to the website of the Roswell Park Donor Center. I am type A+ so if you have a compatible blood type with me you can do a regular donation. If your blood type is not compatible you can still donate platelets. Both are hugely helpful. I was borderline for both types of transfusions this past cycle and just made it without them.
3. Finally, if you have a prayer intention could you leave it in the comments? If it is something private you can just write Private Intention. I'd like to pray for you and offer some of this up for you. If you'd prefer to email your intention to me at nellakat at gmail dot com, that's fine too.
Thank you for your continued prayers and support. I thought I'd be able to write more but it's hard to write when you can't sit up. I hope to update you again soon.
ICE Chemotherapy: What to expect in a cycle.
Day 1:
Easy. I actually came into the hospital in the evening this time and started my chemo at around 2am. This was only the second time my port has been accessed and it makes me really nervous. I took Ativan before I came to the hospital this time to chill me out a bit and to help me handle the taste of the saline when they flush my lines and it seemed to really help a lot. My actual chemo not including pre-meds (steroid, anti-nausea) was only a 2 hour bag so I was able to sleep pretty well, the nurses aids are great about doing my blood pressure, pulse ox, and temperature even if I'm asleep if they can get to my arm which is nice.
Day 2:
Easy. I was able to eat well, walk 33 laps around my wing (which equals a mile), have a wonderful visit with a very dear friend and 2 visits from my husband. I also took a shower and dressed in real clothes so I could visit with my friend OUTSIDE in the hospital courtyard which was so nice. Tonight I get all 3 of the chemo drugs in my protocol. One of them runs for 24 hours and it's difficult. Really difficult. It smells so bad, just when it hangs in the bag, before you're even hooked up. I'm not sure if I can taste it when I'm getting it but I'm pretty sure I can, even after I leave the hospital. Guess why it's so stinky...did you guess? It's derived from mustard gas. I know. A bunch of my "pharmaceuticals are the devil" readers just passed out. Anyway, I have to be hooked up to that from 5am to 5am. That's my fun with WMD. I also have the 2 hour bag I had last night and another 1 hour bag of something else. Which means day 3 isn't exactly a barn burner in the productivity department.
Day 3:
I'll be hooked up to the mustard gas all day and all night today. It will be gross and my appetite will suffer. I have to force myself to eat the best I can because last cycle I lost a lot of weight. I lost about 7 pounds, which I really don't have room to lose. I rallied in the following weeks, but I didn't manage to get it all back before I came back here to start the new cycle. It' really important that I maintain my weight to the best of my ability in order to give myself every advantage going into the transplant because I'll definitely lose weight when I start that super chemo and the ensuing process. At my hospital there is Mass at noon on Wednesdays so I will be going. By the time I get back my day is pretty much over. I get in bed and I'm pretty useless.
Day 4:
Today I pack up my stuff, get cleaned up, and wait to be discharged. When I get home I go to bed and I sleep almost solid until day 6 or even into Day 7. I get up to (hopefully) eat, drink water, and use the bathroom.
Day 5:
I forgot to say that on Day 5 I go to the hospital to get a Neulasta shot. It's really hard to go to the hospital because I'm so tired. I get home and day over and like I mentioned above under Day tomorrow and possibly the next day over.
Day 7:
Hopefully I wake up this morning and can get out of bed to go to Doughnut Party at my parents as long as nobody is sick. I get to sit at the table with my family and possibly eat a bit of toast. Then I go home and straight back to bed. I still mostly sleep, but I'm getting into a weird status where I'm to weak to sit up or move but my mind is very awake. I end up watching a lot of TV on my computer.
Day 8:
Back to the hospital today for bloodwork. I spend the whole time praying that I don't need a transfusion. Unfortunately this cycle it won't be a question of if, but when. Blech. Then I hopefully go home, go back to bed. I try to read to the kids in short spurts while I have enough energy.
Day 9-12:
I alternate between hospital free days and hospital days for blood work. I get a bit more energy each day but all that means at this point is that my eyes are open more than they're closed and the kids can come in my room more if they're healthy, they've changed their clothes, and washed their hands. My appetite is beginning to improve and I don't require Zofran to control my nausea anymore.
Day 13:
Watch out! I spend most of the day sitting up in the DOWNSTAIRS OF THE HOUSE as long as everyone is healthy. I even eat some of my meals in the kitchen with my family.
Day 14:
Back to my parents' house for Doughnut Party, more sitting up like a person and even walking around a bit. I beginning to get a tad full of myself. My appetite is improving but I still have to get into bed by 6:30 pm or so.
Day 15:
I am now officially big for my britches (figuratively) and have commenced doing more than I should because I'm feeling guilty and I'm losing my mind. I still have to lay down quite a bit. I've also been told that this time around I need to do even less. Boy oh boy. I continue to visit the hospital every other day for blood work.
This continues until I have to come back to the hospital. This time around it was for my 2nd cycle of chemo, I came back on Day 22, which resets to Day 1. After I finish this cycle, God willing I will begin the transplant process.
Other Stuff
I lost my hair. I mean really, really lost it. It started to go this past Wednesday and by Saturday I had so many totally bald bald spots that Michael had to buzz it for me. It took me so much by surprise because last time it took so long to finally begin to fall out and then when it did, while quite a bit came out and I had to buzz it, it never came out in huge totally bald patches. I mean I would run my hand through my hair and it was like a bunch of gorgeous Italian babies first haircuts were caught between my fingers. My pillow was absolutely coated. It was gross. So Michael buzzed me and now I have a few very small patches of stubble, each about the size of quarter, all floating in a see of pale smooth scalp that has never seen the sun.
My goals for tomorrow (Cycle Day 3):
1. Shower and wear my bareMinerals.
2. Wear real clothes and not pajamas until after Mass (around 1pm)
3. Pray in the morning and evening.
4. Possibly walk 33 laps if I can do it before Mass (this may be ill advised, we'll see)
5. Visit with some friends in the afternoon.
6. Eat appropriately.
So that's it, an update and a "what to expect" for any cancer patients getting ICE chemo who may visit hear.
I have a few quick requests for you:
1. My brother in law Nate is participating in the Ride for Roswell, which is a wonderful fundraiser for Roswell Park Cancer Institute, the hospital where I'm being treated. He is dedicating his ride to me and my family. I'm humbled. His fundraising page can be found here. If you are able and feel moved to do so, please send a few bucks his way. It is a very worthy cause.
2. Local friends have asked about donating blood and platelets for use in my treatment. Last cycle I made it without transfusions of any kind but this time I'll definitely need at least one. If you are local and would like to donate blood or platelets please go here, to the website of the Roswell Park Donor Center. I am type A+ so if you have a compatible blood type with me you can do a regular donation. If your blood type is not compatible you can still donate platelets. Both are hugely helpful. I was borderline for both types of transfusions this past cycle and just made it without them.
3. Finally, if you have a prayer intention could you leave it in the comments? If it is something private you can just write Private Intention. I'd like to pray for you and offer some of this up for you. If you'd prefer to email your intention to me at nellakat at gmail dot com, that's fine too.
Thank you for your continued prayers and support. I thought I'd be able to write more but it's hard to write when you can't sit up. I hope to update you again soon.
Friday, June 13, 2014
In Honor Of My Grandma
 |
| Doris Rexford |
She was born in Exeter, Devonshire, England in 1928. Her town was targeted by 18 Nazi air raids during WWII and she told us many times about the metal cage they had in their home so that when there was an air raid they could climb inside and be protected in case their home was hit and collapsed on them. My grandma was known to say "England is my homeland, but America is my country". She came to the United States at age 17(!) as a war bride, knowing no one but her new husband. She went from a modern, suburban life in England as essentially a schoolgirl in her parents' home to life as a wife and very soon a young mother in a very rural home with no indoor plumbing. When she would wash her first daughter's diapers in the winter she would have to hang them on a line indoors and they would freeze. Solid. She kept her home immaculate. IMMACULATE as in it looks like it was hermetically sealed in 1955 when it was built and nobody ever crossed the threshold again. But people did cross the threshold. She raised 5 children in that home and welcomed 15 grandchildren and 20(and counting) great grandchildren. She just never stopped. She never stopped cooking and cleaning and gardening and learning. She was a force.
She followed the news very closely and always knew the ins and out of everything that was going on here in the US as well as at home in England. She kept a close eye on the Weather Channel and was quick with a phone call whenever something serious was going to hit an area of the country where one of her grandchildren had settled. She watched the financial news and was extremely well informed about what it all meant for her savings, which she recorded meticulously.
One of my favorite stories about my Grandma was a time that I drove her to the bank. I can't remember now exactly when it was but I think it was about 9 years ago. Anyway, I drove her to the bank because her CD's were coming due and she had to do some stuff with interest rates and who knows what. I'll tell you who knew what--she knew what. Oh my goodness. She came in there, quite elderly at that point, unable to see particularly well, with all of her calculations written on the back of an envelope. She had calculated what the new rate on her CD should be based on the financial news and "what Mr. Greenspan said".
Have you ever seen those posters at the bank where they try to sell you CD's and they write interest rates on it with a sharpie to make you think they're on top of things? It turns out they're not that on top of things, but Grandma sure was. We were ushered into the cubicle of a poor young man who had no clue who he was dealing with. My grandmother began to discuss the business she had to complete and he began telling her that the rate on the poster was the rate that they would be using for this upcoming term on her CD's, and that Grandma could expect a return of x amount. Well, that did not match what was on the envelope or what Mr. Greenspan had to say...so...there was work to be done.
I was getting a bit nervous at this point because honestly I didn't understand a word of what they were discussing and my Grandma's calculations on the envelope were out to the 3rd decimal place and I hate math and I'm the kind of rube who would believe that the numbers on a poster at the bank are accurate. I had no clue who was right. I had no clue how this would play out, and I had never really observed my Grandma like this, out in the world. Grandma walked him through her numbers, which he conceded were correct, but could not be used until somesuch day. So, Grandma very politely and patiently walked him through it again because she literally knew his business better than he did. At this point the poor guy didn't know whether he was coming or going. Grandma sensed this and reached across the desk and put her hand on his arm and said: "Am I troubling you Derrick?" and I had to stifle a fit of giggles because it all seemed so hilarious. At some point a manager showed up and after some more back and forth guess what? Grandma and her envelope won. After a short and very polite speech about what people's unbridled borrowing is doing to the savers in this country Grandma was on her way with her CD's all squared away.
I will never forget that day for so many reasons. I knew my Grandma was really smart, everyone in her family was and you knew just from talking to her that she was sharp, but to see that kind of knowledge collected and calculated all on her own on the back of an envelope and used to school a bank--it was breathtaking. Even more breathtaking was the incredible, unshakable grace and politeness with which the entire matter was handled. Many people in her situation would have given up, and many more would have lost their cool and been loud or obnoxious to try to get their point across. She was just simply unflappable and polite. I still chuckle to myself everytime I think of the phrase "Am I troubling you Derrick?". Poor guy had no idea what he was in for.
I want to tell you so much about her, about how she walked everywhere, even to get her groceries into her seventies and golfed for years. She'd get up at 5am to play and then walk home and get right to work making sure everything in her home was just so. When my Mom had her 4th and 5th babies and was working full time she would come over and clean the house and make dinner during the day and when we'd walk in the door we knew immediately that she'd been there because everything was perfect. If she was still there when we got home we would all fight over who went in the door first because she was starting to lose her hearing and we would always inadvertently scare her which we hated to do. We started coming in the door and SLAMMING it shut and then SLAMMING our backpacks onto the floor while kicking off our shoes and TALKING VERY LOUDLY because she was not only hard of hearing but was often vacuuming something to kingdom come that you didn't even know could or should be vacuumed. We still ended up scaring her most of the time, but she was always happy to see us.
That's the thing I really want you to know about her. She had 5 children, 15 grandchildren, and 20 great grandchildren but she had a way of saying your name and talking to you and about you that made you feel like you were the only one. She was just so proud of every little thing each of us did and always made sure we knew what all the cousins were up to. Somehow she always made you feel so incredibly important and special. A lot of it was all the normal stuff of growing up, but as long as you were trying, that was worth reporting. She just loved us, and we all felt it. People always worry about there being enough love in a big family, but my Grandma is proof that there is always enough love.
When my own family started growing beyond what society considers decent, my grandma once grabbed my hand in between both of hers told me "Don't let anyone make you feel badly about these children. I know it's hard now. It's so hard, but someday they won't need you anymore and you will be surrounded by such love, Nella. You will be surrounded by so much love."
She was surrounded by so much love. My Mom and her siblings cared for my Grandma so beautifully and so generously that she was able to live independently in her own home until the very end. Doris Rexford was a force to the very last moment, weeding her garden and getting it just so.
Thank you Grandma R, for surrounding US with so much love. If I am a quarter the woman you were, I'll have lived a life I can be proud of.
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