Wow, what a ride. Turns out that the major pain that I was having was a liver abscess the size of an apple. Most liver abscesses begin as a result of having abdominal surgery of any kind. I've had two, so that ups my odds of a germy nasti or two gaining access to my organs. Two different strands of bacterium got in there and starting working me over without my knowing. Anyway, it took me out and put me in the hospital for another 18 days during the first few weeks of September. Loads of pain and slow progress, but I'm on the road to recovery now and happy for it. We rode out Ike while we were there but MD Anderson did quite well after the hurricane passed, thank goodness. Many of our friends & family were not as lucky, with some of them losing electricity for nearly 2.5 weeks. Yikes!
Anyway, I'm back at home and, after going in this last weekend for a CT scan to check on the healing process, we have great news. I'm still feeling a bit low on energy so I will cheat and post the April Update that I sent to all the folks who've been supporting me here, below, instead of writing it all out again.
At this point, I'm not so sure I can do the catch up work that would be involved with writing this blog, so I will focus more on how the first visit to the hospital went, when I had the surgery done for the cancererous Oid in the days to come. I still need to flesh those out and give you the skinny on how all of that went.....It IS, after all, what I started this blog for, right?
Here's the update and there will be more to come when I feel better:
Hi guys!
Hope we haven't been sending too many updates, but lots of folks have been asking what's up, so I'm sending this on to the whole list of folks who initially sent well wishes and prayers. Still so grateful for that!!!
GREAT NEWS:
I had a CAT scan on Friday and we just got the results late yesterday afternoon. Though the docs had said that it would take many months for the apple sized liver abscess to heal, your prayers, good vibes, well wishes, good drugs, boring days of bed rest and Jeff's Loving care have done the nearly impossible. Turns out that I am nearly healed up!!!! The abscess is down to just a few small pockets of infection and I'll be on antibiotics for the next three weeks to clean that part up. Then, (knock wood) we should have "life as usual," which sounds boring but, trust me, is damned exciting after the boredom I've had to deal with! The docs were amazed and truly happy to see this kind of progress in so little time and Jeff and I were, too. We really only expected an improvement of about 20-25% healing, but I only have about 10% of the original abscess to fight now. Turns out that some of the dizziness/sweats/chills and other unpleasant GI symptoms I've experienced are probably due to the pharmacy of medicines that I'm currently taking. (Really, you wouldn't believe the list, but I'll be out of THOSE woods in three weeks, we hope.) I'm still feeling pain and having dizziness and nausea but that should recede fairly soon and I'm in the process of weaning myself off the pain meds now. I'm going to drive MYSELF to Kohl's tonight to do some shopping. YEEE-and frickin'-HAA!! =)
I have to tell you this: Jeff has been amazing during the last 15+ days of my home stay and during the times that I was in the hospital. While we were here in Cedar Park, he's set his alarm so that he can bring me my medicine in the middle of the night. He's brought me breakfast in bed every single day that I've been recuperating here in NW Austin so that I could take the meds that make me nauseated on an empty stomach. (Wow.) We went out and ordered up a Lazy-Boy recliner after about 3 days of being back home and Jeff ran to get it the very next day, even with his bum shoulder. He's done my chores and his own and has put aside his own wants and needs in order to cater to my own. He's been driving me around on car trips when I'm starved for SOME kind of stimulation outside of the house. I really do feel blessed to have such an angel for a husband and I'm doing a one person "wave," standing ovation and 21 gun salute to the man I married. Okay, maybe not 21 guns, but you get the picture.
Also, major thanks to Selia and Kent, who've been letting us crash in their guest cottage during doctor visits and after hospital recuperation. The place is like a very comfortable B&B, we're not intruding on anyone's space and it's closer to the hospitals than our family and friends out in Cypress, so it's just been a Godsend. For those who don't know, Ken and Sue Gaines live next to the guest house and it's always a pleasure to visit with them. We will someday create a musician's commune and join Costco, doing everything in bulk and growing organic veggies in a garden. Selia says we'll need a really, really big front porch with multiple rockers. I think we'll need to make them with custom arms so that we can fit our guitars/other instruments into them with ease. We'll need to work out the details later on, for sure.... =)
Anyway, I hope this finds you well, healthy and happy! I sure do appreciate all the Love, prayers, good vibes, jokes and encouraging words that you guys have sent, you just don't know how much. It's hard to have a negative attitude when you have an army of friends and family bolstering you up and ya'll have been incredible. Damn, I'm misting up just writing this, so I need to stop. I think the words, "Thank You Very Much," will do it for now.
Love to all,
:o) April
PS: FYI, I am TERRIBLY behind on my email responses and need to catch up, so please accept my apologies if I haven't replied to a message you might've sent me. Still can't do as much as I would like to, but will be back to 'normal' soon, I hopes.
Tuesday, October 7, 2008
Wednesday, August 27, 2008
Tuesday, August 26
Tuesday, August 26
Today is filled with more pain so I call in to Doc. Lambert's to ask what can be done and to inquire about the possibility of more pain meds. They can get me into see the doc in early September but the doc is out until next week....Pain meds are out of the question from her. I'm so very unhappy about that 'cause I really feel as though I've pulled something in me belly. I may need to go in to see Dr. Bala to ask for some pain meds tomorrow. I find it hard to even type today, so I take one of my few precious remaining Hydrocodone 500 pills to alleviate the constant cramping. It's just so exhausting to deal with constant pain! =(
Jeff finds a used cell phone on Ebay to replace mine, which is held together with electrical tape and has been for the last several months. Awesome! Alex, our son, has picked today to become unhappy and antagonistic, though. He is homesick, misses Houston, and doesn't want to take the math assessment test today. This he lets us know about in no uncertain terms! Jeff and I go out to Yama Sushi to chow down, leaving Alex behind to take his math compass test at ACC, calm down and fend for himself for dinner. Before Yama, we go to the mall so that I could try on thumb rings. I'll explain more about that later....
After Yama (Yumma!), we hit Best Buy to look at car stereo/CD player/MP3 players/Bluetooth capable receiver thingies for Jeff's SUV as a late B-Day present and find a Sony that does everything but change a baby's diaper and walk the dog! That's the one but we'll have to wait until Friday to get it 'cause the 12% coupon won't take effect until then. So, it's off to TJ Maxx to look at thumb rings. Nope, they don't have 'em. Hmmm....what else can we do to put off going home? The Hydrocodone is working and I'm feeling better now than I have for a long time, so I want to take advantage of it. Ah, HA! We need to get some Kefir from Randall's!
HELPFUL TIP: Kefir is a dairy/yogurt product that will introduce 11 different "good" bacterium into your system. I get the feeling that mine needs this so I will be slugging down pomegranate flavored sludge for the next several days in the attempt to regulate my system. The consistency is hard for me to get used to but it worked the last time I was hospitalized so I'll give it another go. Might help you, too, if your system gets out of whack. This commercial break is now over....we return you to your regularly scheduled program....
After getting the Kefir, Jeff says that he needs to hit Academy, so off we go to putter around there for a bit.
Finally, we go home. Alex is quietly filling out applications online and has already gone back up to the mall with filled out applications to turn them in. He tells us that he has an interview at two different places and is being very polite. He didn't do well on the test because he didn't have much time to study but he might have another chance to exempt himself from taking the pre-college algebra class. We'll see. No apologies for his poor behavior earlier, yet, but I am very happy to see that he's doing the right thing now and is looking at his life in a different light. It might take some time but I'm sure he will say he's sorry. He has such a good heart and is a really good kid, but is having some growing pains. Don't we all....
For the record, he has choices. He can go back to Houston and get a full time job, find a place to live, find roomies and support himself fully for a year, after which we will be happy to re-explore the college idea. Or, he can stay here in Austin with us, live by our rules, get a part time job, go to college, be fed, clothed, boarded and have quality healthcare while bettering his chances for a good career and life. Hmmmm....tough call, right? =)
I love my kiddo and know that he is suffering....It is hard to leave the only city that you can remember growing up in. However, I know that, with his amazing personality, it won't take any time at all for him to find a new group of friends to hang out with. (He can meet 'em at college and at work, don'tcha know?) He is going to Houston tomorrow for a doctor's appointment and will stay the night to see friends so that might help with the homesickness. However, he will have to figure out a way to make some money for gas for the return trip, 'cause we won't pay for the extras and he has chosen not to ride in with his Dad to go to the doc. appt. Tough Love is so tough but it is essential right now.
Anyway, the tornadic activity is over and Jeff and Alex settle down in front of the TV. I settle down to my computer to search for 14K gold, 4mm, comfort fit gold thumb rings/bands. I want a heavy band as it will be something that I will wear for the rest of my life. This ring will be my early birthday present, so that I can justify the price, and will be a reminder of what I've been through. It will be my constant reminder that I am in God's hands, always. I find one that is only a bit more expensive than the least expensive one, but this one has free engraving! I'm in, all in and it looks beautiful! I buy it and ask that they engrave this inside the band:
In God's Hands
I think it's perfect and I become so overwhelmed after ordering it that I begin to cry. Whew! My emotions are pretty raw this week! This ring is going to put out powerful vibes to whomever inherits it when I'm gone, kinda like a MUCH nicer version of the ring in "The Lord of the Rings."
Early to bed tonight because both Jeff AND Alex are going into Houston tomorrow, but in separate cars. Jeff is going to pick up the pop-up Taj Mahal and attend some work meetings there at the home campus. My back has been hurting so badly that I take a Soma to work with the Hydrocodone and, for the first time in days, I feel normal with very little pain. However, the Soma makes me woozy and I'm out pretty quickly after the lights go out. Night, night....
Today is filled with more pain so I call in to Doc. Lambert's to ask what can be done and to inquire about the possibility of more pain meds. They can get me into see the doc in early September but the doc is out until next week....Pain meds are out of the question from her. I'm so very unhappy about that 'cause I really feel as though I've pulled something in me belly. I may need to go in to see Dr. Bala to ask for some pain meds tomorrow. I find it hard to even type today, so I take one of my few precious remaining Hydrocodone 500 pills to alleviate the constant cramping. It's just so exhausting to deal with constant pain! =(
Jeff finds a used cell phone on Ebay to replace mine, which is held together with electrical tape and has been for the last several months. Awesome! Alex, our son, has picked today to become unhappy and antagonistic, though. He is homesick, misses Houston, and doesn't want to take the math assessment test today. This he lets us know about in no uncertain terms! Jeff and I go out to Yama Sushi to chow down, leaving Alex behind to take his math compass test at ACC, calm down and fend for himself for dinner. Before Yama, we go to the mall so that I could try on thumb rings. I'll explain more about that later....
After Yama (Yumma!), we hit Best Buy to look at car stereo/CD player/MP3 players/Bluetooth capable receiver thingies for Jeff's SUV as a late B-Day present and find a Sony that does everything but change a baby's diaper and walk the dog! That's the one but we'll have to wait until Friday to get it 'cause the 12% coupon won't take effect until then. So, it's off to TJ Maxx to look at thumb rings. Nope, they don't have 'em. Hmmm....what else can we do to put off going home? The Hydrocodone is working and I'm feeling better now than I have for a long time, so I want to take advantage of it. Ah, HA! We need to get some Kefir from Randall's!
HELPFUL TIP: Kefir is a dairy/yogurt product that will introduce 11 different "good" bacterium into your system. I get the feeling that mine needs this so I will be slugging down pomegranate flavored sludge for the next several days in the attempt to regulate my system. The consistency is hard for me to get used to but it worked the last time I was hospitalized so I'll give it another go. Might help you, too, if your system gets out of whack. This commercial break is now over....we return you to your regularly scheduled program....
After getting the Kefir, Jeff says that he needs to hit Academy, so off we go to putter around there for a bit.
Finally, we go home. Alex is quietly filling out applications online and has already gone back up to the mall with filled out applications to turn them in. He tells us that he has an interview at two different places and is being very polite. He didn't do well on the test because he didn't have much time to study but he might have another chance to exempt himself from taking the pre-college algebra class. We'll see. No apologies for his poor behavior earlier, yet, but I am very happy to see that he's doing the right thing now and is looking at his life in a different light. It might take some time but I'm sure he will say he's sorry. He has such a good heart and is a really good kid, but is having some growing pains. Don't we all....
For the record, he has choices. He can go back to Houston and get a full time job, find a place to live, find roomies and support himself fully for a year, after which we will be happy to re-explore the college idea. Or, he can stay here in Austin with us, live by our rules, get a part time job, go to college, be fed, clothed, boarded and have quality healthcare while bettering his chances for a good career and life. Hmmmm....tough call, right? =)
I love my kiddo and know that he is suffering....It is hard to leave the only city that you can remember growing up in. However, I know that, with his amazing personality, it won't take any time at all for him to find a new group of friends to hang out with. (He can meet 'em at college and at work, don'tcha know?) He is going to Houston tomorrow for a doctor's appointment and will stay the night to see friends so that might help with the homesickness. However, he will have to figure out a way to make some money for gas for the return trip, 'cause we won't pay for the extras and he has chosen not to ride in with his Dad to go to the doc. appt. Tough Love is so tough but it is essential right now.
Anyway, the tornadic activity is over and Jeff and Alex settle down in front of the TV. I settle down to my computer to search for 14K gold, 4mm, comfort fit gold thumb rings/bands. I want a heavy band as it will be something that I will wear for the rest of my life. This ring will be my early birthday present, so that I can justify the price, and will be a reminder of what I've been through. It will be my constant reminder that I am in God's hands, always. I find one that is only a bit more expensive than the least expensive one, but this one has free engraving! I'm in, all in and it looks beautiful! I buy it and ask that they engrave this inside the band:
In God's Hands
I think it's perfect and I become so overwhelmed after ordering it that I begin to cry. Whew! My emotions are pretty raw this week! This ring is going to put out powerful vibes to whomever inherits it when I'm gone, kinda like a MUCH nicer version of the ring in "The Lord of the Rings."
Early to bed tonight because both Jeff AND Alex are going into Houston tomorrow, but in separate cars. Jeff is going to pick up the pop-up Taj Mahal and attend some work meetings there at the home campus. My back has been hurting so badly that I take a Soma to work with the Hydrocodone and, for the first time in days, I feel normal with very little pain. However, the Soma makes me woozy and I'm out pretty quickly after the lights go out. Night, night....
Tuesday, August 26, 2008
Monday, August 25
Monday, August 25
Though I'm still feeling puny, I need to go with Alex to make sure that he's registered properly for the Fall semester. (He has some previous issues with math transfers that might crop up, which is why I'm going with.) We go up to ACC and meet with a counselor who tells us that we'll have to wait because of a problem (really?) regarding Alex's Math classes and whether or not the class that he's already taken will transfer over. Alex may have to take another placement test, in other words, but this counselor is working to get proof that he's ready for College Algebra. We thank her and head back home to wait for her call. She calls a bit later to let us know that, yes, Cy-Fair College sent a fax but that it was inconclusive proof that Alex is ready for C. Alg. Geeeez! Anyway, she's going to work on finding out more about that and we hope that we can get Alex all set up within the next couple of days.
Jeff and I head out to HEB and do the grocery shopping. I'm still feeling kinda poopy but am SO bored that anything outside of the house sounds appealing. We get back and end up watching some TV until bedtime. Yawn. Boring, I know. I will be calling Dr. Lambert in the morning to ask about this pain 'cause I don't think it's normal and I'm about to run out of pain medication. The pain level is about a 6-7, with occasional spikes of 9, without the pain meds, so I'm really pretty sure I need them for awhile longer. Hope they'll agree and/or let me know what I should do in order to alleviate this garbage. I am trying very hard to be positive, but I'm afraid I'm failing a bit since having the argument with Jeff. I'm a very emotionally based person....Physical pain is NOTHING compared to emotional pain, but when you put the two together, it's hard to be optimistic. I vow to get back to that, though, and the emails from a few friends help to bolster me. I have printed one of their messages out and have it taped to my mirror so that I can read it every morning and at night. The words she sent are just that encouraging...Thank you, Kathy.... =)
Though I'm still feeling puny, I need to go with Alex to make sure that he's registered properly for the Fall semester. (He has some previous issues with math transfers that might crop up, which is why I'm going with.) We go up to ACC and meet with a counselor who tells us that we'll have to wait because of a problem (really?) regarding Alex's Math classes and whether or not the class that he's already taken will transfer over. Alex may have to take another placement test, in other words, but this counselor is working to get proof that he's ready for College Algebra. We thank her and head back home to wait for her call. She calls a bit later to let us know that, yes, Cy-Fair College sent a fax but that it was inconclusive proof that Alex is ready for C. Alg. Geeeez! Anyway, she's going to work on finding out more about that and we hope that we can get Alex all set up within the next couple of days.
Jeff and I head out to HEB and do the grocery shopping. I'm still feeling kinda poopy but am SO bored that anything outside of the house sounds appealing. We get back and end up watching some TV until bedtime. Yawn. Boring, I know. I will be calling Dr. Lambert in the morning to ask about this pain 'cause I don't think it's normal and I'm about to run out of pain medication. The pain level is about a 6-7, with occasional spikes of 9, without the pain meds, so I'm really pretty sure I need them for awhile longer. Hope they'll agree and/or let me know what I should do in order to alleviate this garbage. I am trying very hard to be positive, but I'm afraid I'm failing a bit since having the argument with Jeff. I'm a very emotionally based person....Physical pain is NOTHING compared to emotional pain, but when you put the two together, it's hard to be optimistic. I vow to get back to that, though, and the emails from a few friends help to bolster me. I have printed one of their messages out and have it taped to my mirror so that I can read it every morning and at night. The words she sent are just that encouraging...Thank you, Kathy.... =)
Saturday & Sunday, August 23 & 24
Saturday, August 23
Jeff is apologetic and recognizes that he has taken out his frustrations on me again. He hasn't had his usual stress relief of martial arts to get his ya-yas out and is very sorry for what he did. I'm doing my best to understand that he's been under a tremendous amount of strain but I still feel like I was kicked when I was down....really, really down, the worst down in my life. I'm working to try to get rid of that negative energy and move on toward what I hope will be progress in the subject of stress release for him. We need to find an acceptable solution for him to get rid of tension if we are to stay together.
However, I have pulled something inside, feels like, maybe because of all the crying, maybe because I lifted my leg in a weird way, I don't know. The pain has come back and my lower back is killing me. I'm totally backed up and it makes me sick to my stomach. The pain is almost as bad as when I was first released from the hospital and this worries me. So, though I wanted to try to do more research into the flowers for patients idea, I need to go back to crawling instead of walking or running. I have a pretty boring 2 days of napping, watching TV and reading. Yuck, yuck, yuck....this really does suck....
Jeff is apologetic and recognizes that he has taken out his frustrations on me again. He hasn't had his usual stress relief of martial arts to get his ya-yas out and is very sorry for what he did. I'm doing my best to understand that he's been under a tremendous amount of strain but I still feel like I was kicked when I was down....really, really down, the worst down in my life. I'm working to try to get rid of that negative energy and move on toward what I hope will be progress in the subject of stress release for him. We need to find an acceptable solution for him to get rid of tension if we are to stay together.
However, I have pulled something inside, feels like, maybe because of all the crying, maybe because I lifted my leg in a weird way, I don't know. The pain has come back and my lower back is killing me. I'm totally backed up and it makes me sick to my stomach. The pain is almost as bad as when I was first released from the hospital and this worries me. So, though I wanted to try to do more research into the flowers for patients idea, I need to go back to crawling instead of walking or running. I have a pretty boring 2 days of napping, watching TV and reading. Yuck, yuck, yuck....this really does suck....
Friday, August 22
Friday, August 22
I end up napping in my own bed on and off from 8 until about 9:30ish and then get up to start the day. I have three things to do today that will distract me from my problems:
1. Highlight my hair with a 2 step highlighting kit, a long and drawn out process,
2. Research local florist shops to find some who might donate broken rosebuds toward my “Roses for Patients” program, and
3. Go to my 2:30 oncology appointment.
My sister was set to come over this evening for home movies, but I canceled that because of the tension between Jeff and myself. I am still overwrought, feeling quite betrayed, and cannot pretend that everything is okay. Steph offers to come get me and “sweep me away” for dinner and a movie and I’m very happy to accept. So, we make plans for the early show of “Dark Knight” and I get into the bathroom to highlight my hair.
The reason for the highlights is that I won’t be able to do anything brutal to my hair when and if I begin chemo. Plus, I entered the hospital with a bit o’ dark rootage and felt a bit like some sort of refugee, though my manicure and pedicure were perfect. =) I finally finish and emerge from the bathroom smelling like a chemist shop, but newly blonde with natural looking strawberry blonde highlights. Refugee no more!
I research the florists, get the names, addresses, phone numbers and then it’s time for the oncologist’s. Jeff had told me earlier that he didn’t think he could make it to this appointment because of work and, in fact, wondered why I was going at all. He was really worn out when he said this. I explained that Dr. Bala is my first opinion and Dr. Yao will be my second opinion and, if in fact I DO end up doing chemo, it will be dripped into me at Dr. Bala’s office here in Cedar Park, not in Houston. So, though Jeff offers to come with me after all, I decline the offer and ended up driving myself to Dr. Bala’s. I have vowed not to accept any assistance from Jeff unless completely necessary and I will stick to that as much as I can.
(An aside: I do not know how to write about this trouble that Jeff and I are now having, but feel the need to be completely honest in my blog because of the impact that it could have on others in our situation. However, I don’t want to impinge on Jeff’s privacy, either, and you’re only hearing my side of the story, which is never fair. I no longer know how to write about my time in the hospital and about Jeff’s loving treatment of me because Jeff’s version of that time and mine are now SO incongruous, completely at odds. I just can’t believe this is happening, but I will try to be conscious of privacy while relaying the problems that cancer patients and their caregivers might face when battling this crap together.)
Dr. Bala and I sit down to discuss chemo. The best thing that Dr. Bala can compare my rare Oid to is the adenocarcinoid features of colo-rectal cancer. Goblet Cell Carcinoids have two ways of operating, though, so the colo-rectal comparison is sketchy at best. The real worry is the fact that Dr. Basa unwittingly put FOUR rows of staples through the Oid when she operated and cut into it twice. Then, she rinsed my abdominal cavity with a wash of saline and antibiotics, as is usual when doing an appendectomy. She didn’t know that she might've been spreading seed cells all over my ab cavity and I do not blame her for this at all. However, seed cells are the monster in the closet that I am now afraid of. When one cuts into a cancerous tumor, it is possible that seed cells can be released into the abdominal cavity, the peritoneum. Guess what Goblet cells like to nest in? Peritoneal tissues and the surrounding tissues of your organs. With colo-rectal cancer, the recurrence rates are 20-30% for it to come back. However, my brand of cancer doesn’t have much data on it, so it is best to wait to see what Dr. Yao has to say about it over at MD Anderson. Doctor Bala tells me that chemo will only help my chances less than 5%, but then amends that for even less, more like less than 3% because of the Goblet Cell w/ Signet Ring aspects situation. Looks like I will have to talk with Dr. Yao in order to make a final decision. I ask Dr. Bala what SHE would do were she in my shoes and she tells me, laughing, “I’d take the money and go to Europe!” I love her honesty! She tells me that, if she thought that the chemo would do me any good, she’d be begging me to do it, but she doesn’t think that the non-metastisizing sort of threat that I’m under will benefit at all from chemo. It’s just too hard to get the chemo over to the seed cells unless they have already gotten situated into a place where the chemo could find them. Good ‘nuf. I wait 20 minutes to make a follow up appointment for 3 months later, just in case, and then head back home feeling woozy and sweaty. I think I did too much today and hit the sofa when I get home to rest up for the evening with Stephanie.
Sweet Steph comes over right after the sky falls down on Cedar Park and we run off into the rain to Jason’s Deli, next to Alamo Drafthouse. Alamo Drafthouse serves food, wine and beer, but Jason’s Deli has a better selection, so we eat there. The movie is really quite good. Heath Ledger lived up to the hype and was one creeeeepy son of a bitch lunatic in the movie. Job well done! Once we got back to the house, I realized that Jeff and Alex were gone. I called Jeff, got his voicemail and left him this message: “I’ve got a $20.00 in my purse that says that you and Alex are watching “Dark Knight!” Sure enough, Jeff calls back and lets me know that the credits were just rolling at the theater that they went to. Too funny! They come back to the house and we all sit down to a glass of wine to discuss the movie. The evening turns out kinda nice and the tension in the air is lessening to a small degree, which is good. We’ll see what tomorrow brings….
I end up napping in my own bed on and off from 8 until about 9:30ish and then get up to start the day. I have three things to do today that will distract me from my problems:
1. Highlight my hair with a 2 step highlighting kit, a long and drawn out process,
2. Research local florist shops to find some who might donate broken rosebuds toward my “Roses for Patients” program, and
3. Go to my 2:30 oncology appointment.
My sister was set to come over this evening for home movies, but I canceled that because of the tension between Jeff and myself. I am still overwrought, feeling quite betrayed, and cannot pretend that everything is okay. Steph offers to come get me and “sweep me away” for dinner and a movie and I’m very happy to accept. So, we make plans for the early show of “Dark Knight” and I get into the bathroom to highlight my hair.
The reason for the highlights is that I won’t be able to do anything brutal to my hair when and if I begin chemo. Plus, I entered the hospital with a bit o’ dark rootage and felt a bit like some sort of refugee, though my manicure and pedicure were perfect. =) I finally finish and emerge from the bathroom smelling like a chemist shop, but newly blonde with natural looking strawberry blonde highlights. Refugee no more!
I research the florists, get the names, addresses, phone numbers and then it’s time for the oncologist’s. Jeff had told me earlier that he didn’t think he could make it to this appointment because of work and, in fact, wondered why I was going at all. He was really worn out when he said this. I explained that Dr. Bala is my first opinion and Dr. Yao will be my second opinion and, if in fact I DO end up doing chemo, it will be dripped into me at Dr. Bala’s office here in Cedar Park, not in Houston. So, though Jeff offers to come with me after all, I decline the offer and ended up driving myself to Dr. Bala’s. I have vowed not to accept any assistance from Jeff unless completely necessary and I will stick to that as much as I can.
(An aside: I do not know how to write about this trouble that Jeff and I are now having, but feel the need to be completely honest in my blog because of the impact that it could have on others in our situation. However, I don’t want to impinge on Jeff’s privacy, either, and you’re only hearing my side of the story, which is never fair. I no longer know how to write about my time in the hospital and about Jeff’s loving treatment of me because Jeff’s version of that time and mine are now SO incongruous, completely at odds. I just can’t believe this is happening, but I will try to be conscious of privacy while relaying the problems that cancer patients and their caregivers might face when battling this crap together.)
Dr. Bala and I sit down to discuss chemo. The best thing that Dr. Bala can compare my rare Oid to is the adenocarcinoid features of colo-rectal cancer. Goblet Cell Carcinoids have two ways of operating, though, so the colo-rectal comparison is sketchy at best. The real worry is the fact that Dr. Basa unwittingly put FOUR rows of staples through the Oid when she operated and cut into it twice. Then, she rinsed my abdominal cavity with a wash of saline and antibiotics, as is usual when doing an appendectomy. She didn’t know that she might've been spreading seed cells all over my ab cavity and I do not blame her for this at all. However, seed cells are the monster in the closet that I am now afraid of. When one cuts into a cancerous tumor, it is possible that seed cells can be released into the abdominal cavity, the peritoneum. Guess what Goblet cells like to nest in? Peritoneal tissues and the surrounding tissues of your organs. With colo-rectal cancer, the recurrence rates are 20-30% for it to come back. However, my brand of cancer doesn’t have much data on it, so it is best to wait to see what Dr. Yao has to say about it over at MD Anderson. Doctor Bala tells me that chemo will only help my chances less than 5%, but then amends that for even less, more like less than 3% because of the Goblet Cell w/ Signet Ring aspects situation. Looks like I will have to talk with Dr. Yao in order to make a final decision. I ask Dr. Bala what SHE would do were she in my shoes and she tells me, laughing, “I’d take the money and go to Europe!” I love her honesty! She tells me that, if she thought that the chemo would do me any good, she’d be begging me to do it, but she doesn’t think that the non-metastisizing sort of threat that I’m under will benefit at all from chemo. It’s just too hard to get the chemo over to the seed cells unless they have already gotten situated into a place where the chemo could find them. Good ‘nuf. I wait 20 minutes to make a follow up appointment for 3 months later, just in case, and then head back home feeling woozy and sweaty. I think I did too much today and hit the sofa when I get home to rest up for the evening with Stephanie.
Sweet Steph comes over right after the sky falls down on Cedar Park and we run off into the rain to Jason’s Deli, next to Alamo Drafthouse. Alamo Drafthouse serves food, wine and beer, but Jason’s Deli has a better selection, so we eat there. The movie is really quite good. Heath Ledger lived up to the hype and was one creeeeepy son of a bitch lunatic in the movie. Job well done! Once we got back to the house, I realized that Jeff and Alex were gone. I called Jeff, got his voicemail and left him this message: “I’ve got a $20.00 in my purse that says that you and Alex are watching “Dark Knight!” Sure enough, Jeff calls back and lets me know that the credits were just rolling at the theater that they went to. Too funny! They come back to the house and we all sit down to a glass of wine to discuss the movie. The evening turns out kinda nice and the tension in the air is lessening to a small degree, which is good. We’ll see what tomorrow brings….
Thursday, August 21
Thursday, August 21
Thursday is get organized day. Jeff is up early to walk the dog, water the plants, feed the kitties and then it’s off to work upstairs and I don’t see him for a lot of the day. Conference calls. I need to catch up on email, bills, sorting mail and some other items and so spend most of the day doing that, along with some other mundane chores. I get the feeling that something is wrong with Jeff but can’t put my finger on it. He seems very standoffish today. We go to CVS on the way to go grocery shopping and, when I ask if something is wrong, it turns out that, yes, Jeff has a beef with me, among some other pretty serious stressors. We have our first argument since the surgery and I am VERY upset about the subject matter. I am not going to share the intimate details, but I DO think it is very, very important for a caregiver to have some sort of stress relief system in place or, at least, find a caregiver support system and/or group so that they do not feel neglected or alone in their un-asked for positions. Jeff claims that I ordered him around and mistreated him in the hospital. I DID NOT DO THIS, I'M POSITIVE. I was extremely careful to be polite and nice because he was doing so much. Now, I feel betrayed. After his accusations, I don’t know how to feel about our time in the hospital because his beef with me regards that time and how he perceived it vs. how I perceived it. He was AWESOME in the hospital, I mean AMAZINGLY patient and giving and was the best nurse I could’ve asked for. I was blown away by the fact that, no matter how many times I had to ask him to do something for me, he was there to do it willingly and lovingly. I constantly thanked him and told him how grateful I was for his care. I told the nurses that he’d developed a halo over his head and wings on his back and told anyone who would listen how lucky I was to have him there. He slept in the room on an uncomfortable chair/bed for all but one or two nights during my stay, and that’s with his shoulder out of whack. I tried to keep the am nurses from waking him but they usually did, anyway, and then he was up in the morning to start all over again. Like I said, absolutely amazing. I told him that I thought he was wonderful VERY often. However, I don’t think he thinks that anyone was looking after him during that time. His birthday came and went during that period with only a bit of a nod and celebration, though I did as much as I could do in my condition, considering. Anyway, the problem extends far beyond that and we are uphappy with one another. The stress can be brutal and I hope that we’ll be able to work this out but I am sooooo upset with him for polluting what I thought was one of the most loving times of our lives with complete misperceptions/fabrications born of caregiver stress. The lesson to learn here is to ask for help for your caregiver, if you are the patient. Most guys are not good at this, so it might be a good idea to offer up the idea for them or make an appointment for them to join a caregiver’s support group so they don’t feel alone. I take my things into the other bedroom for the evening and don’t get much sleep. Into every life, a little rain must fall….
Thursday is get organized day. Jeff is up early to walk the dog, water the plants, feed the kitties and then it’s off to work upstairs and I don’t see him for a lot of the day. Conference calls. I need to catch up on email, bills, sorting mail and some other items and so spend most of the day doing that, along with some other mundane chores. I get the feeling that something is wrong with Jeff but can’t put my finger on it. He seems very standoffish today. We go to CVS on the way to go grocery shopping and, when I ask if something is wrong, it turns out that, yes, Jeff has a beef with me, among some other pretty serious stressors. We have our first argument since the surgery and I am VERY upset about the subject matter. I am not going to share the intimate details, but I DO think it is very, very important for a caregiver to have some sort of stress relief system in place or, at least, find a caregiver support system and/or group so that they do not feel neglected or alone in their un-asked for positions. Jeff claims that I ordered him around and mistreated him in the hospital. I DID NOT DO THIS, I'M POSITIVE. I was extremely careful to be polite and nice because he was doing so much. Now, I feel betrayed. After his accusations, I don’t know how to feel about our time in the hospital because his beef with me regards that time and how he perceived it vs. how I perceived it. He was AWESOME in the hospital, I mean AMAZINGLY patient and giving and was the best nurse I could’ve asked for. I was blown away by the fact that, no matter how many times I had to ask him to do something for me, he was there to do it willingly and lovingly. I constantly thanked him and told him how grateful I was for his care. I told the nurses that he’d developed a halo over his head and wings on his back and told anyone who would listen how lucky I was to have him there. He slept in the room on an uncomfortable chair/bed for all but one or two nights during my stay, and that’s with his shoulder out of whack. I tried to keep the am nurses from waking him but they usually did, anyway, and then he was up in the morning to start all over again. Like I said, absolutely amazing. I told him that I thought he was wonderful VERY often. However, I don’t think he thinks that anyone was looking after him during that time. His birthday came and went during that period with only a bit of a nod and celebration, though I did as much as I could do in my condition, considering. Anyway, the problem extends far beyond that and we are uphappy with one another. The stress can be brutal and I hope that we’ll be able to work this out but I am sooooo upset with him for polluting what I thought was one of the most loving times of our lives with complete misperceptions/fabrications born of caregiver stress. The lesson to learn here is to ask for help for your caregiver, if you are the patient. Most guys are not good at this, so it might be a good idea to offer up the idea for them or make an appointment for them to join a caregiver’s support group so they don’t feel alone. I take my things into the other bedroom for the evening and don’t get much sleep. Into every life, a little rain must fall….
Wednesday, August 20, 2008
Wednesday, August 20
Wednesday, August 20, 2008
Jeff and I get up at about 8am but it seems like 6am because of the billowing dark clouds just outside the windows. Dark, dark, dark! Wow, is it going to STORM today! We get cleaned up and start up the first of two loads of laundry. Jeff ends up doing most of the tidying and cleaning of the apartment because my tummy has decided to be obstinate and I am very much distressed with nausea and cramps. My body just doesn’t seem to want to leap and bound into new health but prefers a slow army crawl, with an occasional jig-jog, instead. After a bit of rest and a few crackers w/ cheese, I feel much better and do a bit of my share to help out. We take the recyclables to Selia’s garage and then take over the refridgeritables and flower arrangement to her place cause we can’t take ‘em with us. (No room at the inn with the dog in the back of my little Maxima.)
Selia has two baby birds that she is nursing and two new additions to her menagerie, a rooster named Jasper and a hen with no name as yet. Funny, I don’t remember Snow White cohabitating with barnyard animals, just woodland animals. The Snow White bubble is burst with these new additions, I think, but Selia is still the fairest in the land. Poor little Jasper the Rooster has had his little head pecked on badly so that his little skull is showing, so Selia is taking him on as a new project. We feed the baby birds, put some salve on the rooster’s head, look at Selia’s new cards (she is an awesome photographer and has her own line of greeting cards) and have some coffee, chatting about this and that. Jeff goes to put a load of laundry into the dryer and load the car and, while he’s gone, the bottom falls out of the dark roiling clouds from above. Monsoon time! It’s just coming down in droves and it’s as dark as night outside! The lights go out and Sue chooses this time to clean out the goose/duck enclosure and the rooster pen so that the new inhabitants will be more comfy. Why not? She’s in her jammies and doesn’t mind the rain, so it’s all good. However, Lucy the goose is hiding from the rain and seems terrified by the storm.
The lights come back on but Jeff is stranded at the apartment while we’re at the main house. After about 15 minutes, though, the rain dies down and Jeff and I prepare to leave. Sue and Selia both tell us that they wish we lived there permanently and we agree. It’s been a TOTAL blast, a healing experience and such fun to be there. Honestly, for not being at home,we felt VERY much at home there. We agree to come back and use the apartment whenever we can and Jeff and I get on our way to my Momcat’s to pack our belongings, get the dog and make sure that Alex is packed and ready for the road. It’s too bad that my mom is at work but we’ll see her soon enough. We give Alex enough $$ for gas and off we go.
Jeff and I stop by my office so that I can pick up some files and I end up giving and getting hugs from everyone there. It’s like a receiving line at a wedding! Mom and Pop offices are wonderful in that you really do feel like family working there. These guys are lifelong friends to me, now, and I’m very glad of it. But, Jeff and the dog are waiting, so the conversation, jokes and hugs will have to wait until later….
The trip is uneventful, but we arrive home to a beautiful flower arrangement left by my little sister, Stephanie. How thoughtful is that? Unpacking and sorting through weeks of bills is never fun, but flowers make it better. =) The cats are extremely pleased to see us and haven’t done anything like poop in our shoes for our delinquent behavior, so I’m way happy that my sister took such great care of them and the plants while we were away. Now, I’m comfy and happy and grateful, oh my. It’s soooo good to be home…..
Jeff and I get up at about 8am but it seems like 6am because of the billowing dark clouds just outside the windows. Dark, dark, dark! Wow, is it going to STORM today! We get cleaned up and start up the first of two loads of laundry. Jeff ends up doing most of the tidying and cleaning of the apartment because my tummy has decided to be obstinate and I am very much distressed with nausea and cramps. My body just doesn’t seem to want to leap and bound into new health but prefers a slow army crawl, with an occasional jig-jog, instead. After a bit of rest and a few crackers w/ cheese, I feel much better and do a bit of my share to help out. We take the recyclables to Selia’s garage and then take over the refridgeritables and flower arrangement to her place cause we can’t take ‘em with us. (No room at the inn with the dog in the back of my little Maxima.)
Selia has two baby birds that she is nursing and two new additions to her menagerie, a rooster named Jasper and a hen with no name as yet. Funny, I don’t remember Snow White cohabitating with barnyard animals, just woodland animals. The Snow White bubble is burst with these new additions, I think, but Selia is still the fairest in the land. Poor little Jasper the Rooster has had his little head pecked on badly so that his little skull is showing, so Selia is taking him on as a new project. We feed the baby birds, put some salve on the rooster’s head, look at Selia’s new cards (she is an awesome photographer and has her own line of greeting cards) and have some coffee, chatting about this and that. Jeff goes to put a load of laundry into the dryer and load the car and, while he’s gone, the bottom falls out of the dark roiling clouds from above. Monsoon time! It’s just coming down in droves and it’s as dark as night outside! The lights go out and Sue chooses this time to clean out the goose/duck enclosure and the rooster pen so that the new inhabitants will be more comfy. Why not? She’s in her jammies and doesn’t mind the rain, so it’s all good. However, Lucy the goose is hiding from the rain and seems terrified by the storm.
The lights come back on but Jeff is stranded at the apartment while we’re at the main house. After about 15 minutes, though, the rain dies down and Jeff and I prepare to leave. Sue and Selia both tell us that they wish we lived there permanently and we agree. It’s been a TOTAL blast, a healing experience and such fun to be there. Honestly, for not being at home,we felt VERY much at home there. We agree to come back and use the apartment whenever we can and Jeff and I get on our way to my Momcat’s to pack our belongings, get the dog and make sure that Alex is packed and ready for the road. It’s too bad that my mom is at work but we’ll see her soon enough. We give Alex enough $$ for gas and off we go.
Jeff and I stop by my office so that I can pick up some files and I end up giving and getting hugs from everyone there. It’s like a receiving line at a wedding! Mom and Pop offices are wonderful in that you really do feel like family working there. These guys are lifelong friends to me, now, and I’m very glad of it. But, Jeff and the dog are waiting, so the conversation, jokes and hugs will have to wait until later….
The trip is uneventful, but we arrive home to a beautiful flower arrangement left by my little sister, Stephanie. How thoughtful is that? Unpacking and sorting through weeks of bills is never fun, but flowers make it better. =) The cats are extremely pleased to see us and haven’t done anything like poop in our shoes for our delinquent behavior, so I’m way happy that my sister took such great care of them and the plants while we were away. Now, I’m comfy and happy and grateful, oh my. It’s soooo good to be home…..
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