So the day finally came. I had to be at the hospital at 5:30am, but had to shower thoroughly with antibacterial soap and finish off the abdominal cleansing rituals, so I was up by 4. I really thought I’d doze off at the hospital, but they didn’t give me time. There were vital signs, blood tests, and visits by the anesthesiologist, the surgeon, and the plastic surgeon, who had me stand up and then proceeded to mark my abdomen and chest profusely with a magic marker. By the time they were through all that, it was time for some prevacid to make sure I didn’t have any stomach upset, and then they gave me something to help me relax on the way to the OR.
They got me situated on the operating table, which is a narrow little thing, then told me they were starting the anesthesia. If you’ve never had general anesthesia before, it is a weird sensation. One minute you are wide awake and chatting a bit with the anesthesiologist, then next minute they are waking you up. Total blackness in between, with no sense of time passing or dreams or anything. I’ve had “twilight sleep” a couple times, which is not total anesthesia–you have no real memory of the surgery, but apparently you can answer direct questions, and you do have some sense of time passing. With general anesthesia, once you’re out, it seems like seconds later that they are waking you up, and that’s it. It’s very weird, especially with a surgery like this, which was technically 5 surgeries in one (left mastectomy, right mastectomy, abdominal tissue removal, left reconstruction, right reconstruction). I was on that table for more than 9 hours and don’t remember or even have any sense of any of it.
I woke in the recovery room, with my lower stomach ON FIRE. Not pain like you might expect from having been cut, but rather pain as if someone were holding a hot poker to my entire lower abdomen. My husband and the nurse were talking to each other, but I couldn’t make sense of it. I knew the nurse was giving me pain meds, but the fire wouldn’t go away. She gave me the max dose and still nothing but excruciating burning. Apparently I asked Marty a couple of questions about how things were at home, and in every case, as soon as he said one word, I abruptly told him to shut up! I don’t remember that at all, and it was weeks before he told me.
I kept dozing for a few seconds, off and on, waking to fire in my belly. Finally, they rolled me to ICU, where they got me a couple of ice packs, which almost instantly brought blessed relief. I apparently pretty much passed out at that point, and Marty went home. The only problem I remember is that I did wake briefly at least three times, with the driest mouth I have ever experienced in my life. My tongue felt like it was made of sand. Unfortunately, I was so groggy from the surgery that I couldn’t figure out how to signal anyone. For all I know, the nurse was in the room with me, but I never saw her. It could have been mere minutes, it could have been a couple of hours, I’m really not sure. Finally, she came in with some ice chips for me. Once my mouth felt halfway human again, all I remember is desperately wanting to curl up in the fetal position and sleep for the rest of my life. Problem was that I had to lie on my back and my back only. My entire front was covered with incisions. I was doomed to sleeping on my back for the next several weeks. I am a confirmed side/belly sleeper, so getting used to back sleeping was one of the hardest parts of the recovery, believe it or not. The pain was certainly the worst part, followed closely by the inability to do for myself, with back-sleeping right on its heels–I just couldn’t rest properly.
I spent the first two days in the ICU, so they could monitor the reconstruction very closely for any sign of blood clots. The blood vessels they reconnected are very, very tiny, so any blood clot at all could have been disastrous. So I was in ICU, which really is just a small hospital room with a lot more equipment. I had never seen an ICU room before, and really, I don’t remember a lot about this one–I was pretty drugged out and slept most of the time. The surgery had been on Monday. By Wednesday afternoon, they decided that the reconstruction had taken well, and I could be moved to a regular room, which was a pretty big operation. By then, they had also decided that I could eat solid food if I wanted, but the way the room move worked out, somehow the nurses miscommunicated, and I didn’t get anything at all to eat until after 3. Pain meds tend to make you nauseous on an empty stomach, and I still was pumped full of pain meds, so by the time they finally got food to me, I was sick and awfully cranky about it. The particular nurse in question seemed to bobble something every time she was around. Sigh. I know nurses have a rough job, but I learned from my stay that some of them can handle it, and some can’t.
Marty brought Morgan up to see me that night. I was a little afraid all the tubes and wires would scare her, but she was too fascinated with the hospital bed and the way it moved to be worried about much else. On the way home, she asked her dad if they could go to her favorite restaurant (Primo’s, an italian place). He told her it wouldn’t be very nice to go out without me. Her response: “Oh, Daddy, Mommy’s ok. She’s got that great bed to rest in and lots of nurses to take care of her, she’s fine!”
Guess I shouldn’t have been quite so worried about how she would feel.
When you’re on chemo, infections hit hard and fast. I started feeling bad last Thursday and was in the doc’s office Friday morning, only to find I had a really, really nasty bladder infection. The doc put me on antibiotics and bed rest for the weekend, not that she had to order bed rest–I wasn’t going anywhere I didn’t have to! So I’ve been down most of the weekend. I’m minimally better, but not completely, still moving slowly and sleeping a lot.
Since I’m off story track right now anyway, I’ll take a side trip and tell you about my 6 year old. I’ve had a long-standing deal with her that if she claims to be “not sleepy” at bedtime, if she will lie down in her bed with her eyes closed for 10 minutes and she’s still awake, she can stay up and watch 30 more minutes of tv until she gets drowsy. She’s always stuck to her end of the bargain, most often being asleep when I check on her. Last week, three days in a row, she was still awake, even though “10 minutes” was closer to 20 by the time I got back there to check on her, so I let her stay up and watch a little more tv. By the third night, though, she was little miss crabby pants and I suspected something was up. So instead of letting her watch tv, I told her I’d lie down with her and help her get to sleep. As soon as I did, the smell of her scented lotion she keeps on her nightstand hit me like a brick wall. She reeked of the stuff. I asked her if she really had closed her eyes when I asked her to, and she immediately said yes.
“Morgan, are you really telling me the truth? Are you really sure you didn’t stay up playing with your lotion?”
Dead silence for a moment, then “how’d you know?”
LOL.
Not wanting to give up my advantage, I told her mommies just know these kind of things, and I could always tell when she was lying, so she needed to always tell me the truth. She apologized and shed a few tears, then she settled down and got to sleep. I thought I had convinced her I had super-mommy powers, and figured that would keep her honest for at least a little while.
The next morning, she woke up & came in the living room, looked at me for a second, then said “you knew about the lotion because you could smell it on my hands, right?”
Ha. So much for thinking I’d outsmarted her!
Rachael got here before the surgery and was great about getting things done the boys never even thought to do–like wiping down the counters and actually starting the dishwasher when cleaning the kitchen. They try; I really think they try, but you have to point out every last detail or it gets missed. Only problem was that Rachael was in pain from the time she got here. Her back and shoulder hurt her so badly she could hardly sleep. We tried everything, but it just kept getting worse. It was so bad that she had what looked like restless limb syndrome. She couldn’t keep her right arm and leg still–had to keep kind of jiggling them to avoid intense pain. She didn’t want to be a bother and didn’t have medical insurance while she was on leave, so she just kept trying to push through it. Finally it got so bad I couldn’t stand it. I found a chiropractor a friend of mine recommended, who would see her that day. It was a long drive out there and Rachael had to do it, because I still couldn’t drive at all, but we made it. Turns out she had a dislocated rib! I never even knew it was possible to dislocate a rib, but there you go. We have no idea how it actually happened. Our only theory has to do with her falling and breaking her wrist in March. She didn’t have the back & shoulder trouble then, but she kept waiting tables with the cast on, balancing food trays that can easily weigh 50 trays and basically just going about life as though nothing was broken. She probably slipped the rib at least partially out of place doing that, then sat perfectly still driving up here for four hours, which most likely irritated it, or maybe she jerked the steering wheel and the rib finally slipped completely out of place, not sure. At any rate, she felt quite a bit better (but REALLY sore) after the first visit. She grumbled some about him not giving her any more warning, lol. It kind of went like this: “ok, I’m going to pop the rib back in place. You ready?” And that was it. Rachael swears the pop was loud enough I should have heard it, but I didn’t. She went back a few more times until he got everything realigned, and she was definitely improving, but it took several weeks before she really felt completely better.
In those weeks, the poor thing went through what I call “new group germ syndrome”. She was around a completely new group of people, and her immune system isn’t a lot better than mine. So every time she had almost recovered from one thing, she picked up something else. She’s still going through it. I think she’s been sick every day she’s been here. But you know, I’ve been really proud of her. With only a couple days’ exception, when she really, truly was just too sick to get out of bed, she’s just pushed through it and kept going. There was a time not too long ago when all she had to do was get the sniffles and as far as she was concerned, the whole world stopped and everyone was supposed to cater to her. I think she picked that up from being “cancer baby”. Until she was about 6, the whole world did stop every time she got the sniffles. We dropped everything and ran straight to the doctor, because during and for some time after chemo, she had no immune system. Even the smallest thing was a big deal. She finally recovered, was even pronounced officialy cancer-free, but her attitude never changed. Drove me crazy when she was a teen–she almost didn’t make it through high school because she kept insisting on staying home “sick”. Add that to her rebellious phase when she’d skip school, and it’s a miracle she ever got a diploma. I almost literally had to sit on her to make it happen, but that’s another story.
The weekend before the “big” surgery finally gets here. I am still concussion girl, but doing ok. A bunch of people at work got together and paid for someone to come over and clean for me, so I made Marty & Trevor get everything picked up first (Rachael did quite a bit too, but I tried to keep her down, because her rib thing was still pretty painful), then had her come over to do all the scrubbing, floors, toilets, the kind of stuff guys would never think to do and would botch if they tried. The house looked fantastic! I just love being in a clean house-I actually feel physically better by just being able to look around me and see clean. Guys don’t get that, at least most of them. So long as they have enough space to sit and a few paper plates left, all is good.
Despite having a clean house, I still had a busy weekend. We made a major trip to Sam’s and the grocery store. I wanted to be sure the house was well-stocked before I left. Rachael and Marty certainly could handle the grocery store, but I felt better knowing there was good food in the house, not just junk. Then there were a lot of, well, let’s say cleaning rituals, to be done before the surgery. I had to be as clean as possible inside and out. That meant showering with a special anti-bacterial soap and scrubbing everywhere. Since they were doing abdominal surgery, it also meant eating light on Saturday, liquids only on Sunday, laxatives, and even enemas. Yep, it was a fun weekend!
Ok, so the lymphectomy was done. It took them a week to get the results, because they ran every kind of test possible, just to be sure, and finally, for the first time since my mammogram came back bad, I got some good news. There was no evidence of cancer in the lymph nodes. This was really extra good news, because if there were no surprises during the ‘big’ surgery, then I wouldn’t have to do chemo or radiation at all after the surgery–the surgery itself would take care of the problem, so long as the invasion was indeed minimal, and the surgeons were confident that they were able to remove the entire cancerous area without coming too close to the chest wall.
So, the big surgery was in about two weeks, and it would take about 8 weeks to fully recover if I had no complications, then that would be it, drama session over. I still had a bit of a black eye and the concussion was still working its magic and my lymphectomy surgery still hurt, but I was surviving, and the pain pills were doing their job. I was bored and frustrated, because I couldn’t do much more than sit on the couch, but it wasn’t horrible, and this whole mess had a solution on the way, with a fairly good chance of a relatively quick recovery.
I was taking mega doses of vitamins, as I had been for a while, trying to beef up my immune system for the surgery. The lymphectomy was healing well with no sign of infection, which was encouraging. The biggest obstacle at this point was the risk of post-op infection. My surgeon had told me it was not only possible, but probable, that no matter how many precautions we took, I would come up with a post-op infection. It just had to do with the prednisone I had to take for the rheumatoid, and even the rheumatoid itself, plus my history of recurrent staph infections. So we were expecting it. They gave me the normal pre-surgery antibiotic plus a special one before the lymphectomy, and so far, no infection. So we had some hope that the same strategy might work for the ‘big’ surgery, though my surgeon warned me to be prepared, as he expected some type of infection. He said not to worry about it, as they would monitor me closely and we would just deal with it as it came. He just wanted me to be aware and be prepared, as it could mean an extended post-op hospital stay and possibly an extended recovery time.
In the meantime, I had several appointments with my plastic surgeon so she could explain everything to me and get ready for the surgery. They had to order a special post-op garment that I would wear for 2-3 months afterwards, so I had to be measured. They showed me pictures of others who had these same procedures and took pre-op pics of me.
There were also blood tests and other running around, so it was a busy two weeks, especially considering that the concussion and the motion of the car didn’t go together very well. We got a nasty surprise a week before the surgery when we found out that not only did we have to pay for the post-op surgical garment (apparently insurance won’t pay for it, which confuses me), to the tune of $100 (we had been expecting this), but the plastic surgeon also required a $300 deposit. Oof. Here I am, on disability, which is only 60% of my salary, and Marty is burning through vacation time at an alarming rate, running me back and forth to the docs and the tests and everything, and suddenly we need an extra $300. Add to that my prescriptions, which have to be paid up front and then the insurance company reimburses–meaning we get the money back in the end, but some of these prescriptions were pretty hefty. We had just moved in April, and even though we did all the work ourselves, it was still expensive. Our savings was pretty much wiped out and it was getting harder to make ends meet. In the meantime, my son was still staying with us, and feeding an 18 year old male is not cheap. We were making it, but only by the skin of our teeth. I still don’t understand the $300 deposit. I had two medical insurance policies and had already met the deductibles on both, so everything should be 100% covered, and the doc’s office knew that. That deposit is still a sore spot.
It was right about this time that my 23-year-old daughter called me from Texas. The economy had hit her pretty hard. She was a training waitress at Chili’s and had just been put in the management program in October. Three days later, when the economy really tanked, Chili’s put a freeze on the management program, so she went back to full-time waiting. Unfortunately, though, business and tips had taken a serious dive, so her income plummeted. Just to make matters worse, one of her roommates moved out, so she went from 1/3 rent and utilities to 1/2. A couple months after that, her phone quit on her and she had to buy a new one. The very next day, her car quit on her. The phone had wiped her out; she couldn’t even afford a tow for a few days. She got some friends to give her rides to work and finally got the car towed a few days later, only to find out the bill was $600, which she didn’t have. So no car–and then her remaining roommate announces she’s moving in two weeks. There was no way my daughter could afford to live alone–she wasn’t really making it as it was. So we decided she’d move up here. She took a leave of absence from Chili’s so she could help out til after the surgery, her dad let her put the $600 for her car on his credit card, and a few days later, she was here–and am I glad she was! I had counted on my son being here during the summer to help out, but he seemed to be going through some kind of phase, the kind I really expected at 15. He and I were butting heads more than anything else. It used to be my daughter and I butting heads like that, so I was a bit apprehensive, but when she got here, she’d grown up and was just a godsend. I hate to say it, but thank goodness the economy tanked on her. I just don’t know what I would have done the rest of the summer without her.
Ok, I really got hit hard by the chemo these past 3 weeks or so, and got away from my promise of a post every day. I am still feeling a bit delicate, but starting to get back to human, so I am going to try to pick up the story again. Last time I was on the story, my mom had gone home, leaving me, my husband Marty, my younger daughter Morgan, my son Trevor (18), who was staying for the summer, and my nephew/brother (see previous posts for an explanation of that little trinket) Zac (19), who stayed for a couple more weeks.
In those two weeks, the boys (my husband is always included when I write “the boys”!) played a zillion video games (a LOT of Nazi Zombies died during those weeks), watched a lot of ass-kicking and kicked-in-the-head movies, and nearly ate us out of house and home. My surgeon also decided that he needed to do a small part of the surgery separately from the rest. Our first decision had been one surgery, because my rheumatoid and the mega-doses of prednisone I take for it cause me to heal slowly and infect easily. The wisdom was to do the mastectomy and the reconstruction all at once, so that I had only one exposure to surgery with its post-op infection risk. That same wisdom led my plastic surgeon and I to decide on what’s called a ‘tram flap’ reconstruction as opposed to implants, because I would have a higher than normal chance of rejecting implants. With tram flap, the surgeon takes fat and muscle tissue from a ‘donor’ site elsewhere on my body and transplants it to the chest, forming breasts. The donor site is usually the lower belly–meaning all of the tissue below my belly button, so bonus!! I lose that ugly roll of flab that just never goes away. The drawback, my plastic surgeon warned me, is that it is incredibly painful. She told me that the abdominal part of the surgery would be FAR more trouble when recuperating than the breast area. Boy, was she right!!!!!!!!!! I can’t imagine someone having a ‘tummy tuck’ just to get rid of that fat. IT HURTS, and it hurts for a VERY long time. Believe me, 10,000 stomach crunches would be FAR easier and less painful. I already bought myself an ab roller (found it at Goodwill, $3!!–I had one a few years ago, paid a lot of money for it, [and actually used it], and I’m here to tell you, it worked, and worked well. I highly recommend the thing.) As soon as my doc clears me, I’ll be stomach crunching and happy to do it, because surgery just to get rid of the blubber isn’t even close to worth it.
But, as usual, I digress. Once my surgeon knew the plastic surgeon was planning to do the reconstruction using a tram flap, which involves some pretty delicate reconnecting of teeny-tiny blood vessels, he decided that we needed to do the lymphectomy as a separate surgery before the mastectomy/reconstruction. With invasive breast cancer, they almost always do a lymphectomy, so that they can check the lymph nodes very carefully for any signs of cancer cells. If the cancer has spread to the lymph nodes, it is much more serious, because you have lymph nodes throughout your body, and they all work together. If the cancer is in the lymph nodes, it could have spread anywhere and everywhere, so it’s important to know. If he tried taking out the lymph nodes at the same time as the reconstruction and it came back positive for cancer, then he might have to go back in and remove more nodes, which could be disastrous for the delicate blood vessels in the reconstruction.
So, June 9, I went in for day surgery for sentinel node removal on the right side only. We knew there was some invasion on the right side, though we thought it very minimal. We suspected cancer on the left, but weren’t sure there was any cancer at all, much less invasion, so the surgeon said that just taking nodes on the right would be enough. There are a bunch of nodes under your arm–I’m not sure how many exactly, but it used to be that this surgery required removing 20-40 nodes, which caused all sorts of side effects. Lymph nodes help drain fluids and move them through your body. Apparently, you can do without the 20-40 nodes, but it requires physical therapy and is incredibly painful, can cause temporary or even permanent swelling of the arm, water retention, all sorts of bad stuff. So they came up with a way to identify the “sentinel” nodes, which are the first ones in the chain to receive fluids from the breast. They use nuclear medicine to do this. Did you ever wonder exactly what nuclear medicine was? I did, when I would see the signs in hospitals. Well, it involves them inserting irradiated material into your body. In this case, they gave me 4 injections–north, south, west, and east of the right nipple (I do not have the words to describe what it feels like to get an injection in the areola, much less 4 of them.) They have you massage the area to make sure the fluids begin to flow and get picked up by the lymph nodes. Then, after several minutes, they use some type of ‘wand’ to identify where the nuclear stuff is under your arm, and mark the spots with a marker (if you’ve never had surgery, they use markers all over the place, even write notes sometimes–your body is like a giant drawing board). In addition to the marks on the outside, apparently the nodes turn color (in this case, I think it was blue) on the inside, so when the surgeon opens you up, he (or she–I’m not being sexist, it’s just my surgeon in this case was male!) can tell which nodes were the first to pick up the fluids. This way, he only had to take out 3 nodes. Since these were at the ‘top’ of the drainage path, if they were non-cancerous, non of the others would be either.
So the surgery took less than an hour and went easily, but I woke up in PAIN. They gave me all the narcotics they were allowed, meaning I should have been flying with Snoopy, chasing the Red Baron or something, but the pain was a real buzz kill, lol. Someone finally thought to get me an ice pack, and it was the greatest thing I had ever felt–almost total relief. All the meds in the world, and ice was the answer. Sometimes simpler is just better.
I was able to go home that day, and I immediately retreated to my couch nest, wearing one ice pack on my head like a hat (concussion was still in full bloom) and one under my arm, popping pills and watching more TV than anyone ever should. I think I lost 15 IQ points this summer from all the idiot box time I’ve logged. Maybe that’s why I ramble on so long?
My chemo was broken up into two rounds, one round of cytoxan and adriamycin, one round of taxotere and herceptin. The last cytoxan/adriamycin treatment was two days ago. It hit my stomach pretty hard–despite taking two nexium a day, I still was woken up twice that first night with blazing acid reflux. Had to spend most of the night in a sitting position in my little couch nest. It’s getting better, but slowly. My stomach still feels delicate, much movement brings on the indigestion, and I have a raging headache. Fun, fun, fun!!
Just to top it all off, I had to run around having all sorts of tests done today, to get prepared for the next round of meds. They apparently can effect heart function, so I had to have an echocardiogram and an EKG, and, believe it or not, a pregnancy test! I know they are just being thorough, but I ask you…after three months of chemo while still recovering from massive surgery, how likely do you think it is I’m pregnant? There’s nothing like surgery and chemo to ruin your sex life!! If I’m pregnant, everybody look for a star in the east and get yourself to church! Good grief.
The real kicker is, that due to insurance and who’s billing whom, I had to go to two different hospitals (and two different building in one of the hospitals) to get it all done, so I’ve been running non-stop and am craving my little nest, so bye for now!
Sorry, I’ve had a MAJOR case of the sleepies the past week. I’ve been asleep the vast majority of the week, and even when I was awake, I felt like I barely had the energy to even sit on the couch, much less in front of the computer. I really wanted to post at least a little every day, but this past week, the chemo won out over that desire. Any energy I did have I used to help keep the house pulled together as much as possible.
Marty works for Dell, and they have a shift bid every quarter, so his shift often changes, and today was the first day of his new shift–6 AM to 5 PM, 4 days a week. He is a complete morning person, usually up by 5 or 5:30 just naturally, so it’s great for him. What’s not so great is my daughter’s car is on the fritz at the moment, so we are playing car shuffle and getting by on just one car this week. That means someone has to be up at 5:30 to take him to work. Rachael works nights, and I am often up at 4:30 or 5 anyway with some symptom from the chemo or the rheumatoid, so I figured it wouldn’t be that bad for me to be the designated morning chauffeur. So we needed to leave at 5:30, with 5:40 being the absolute, drop-dead latest. Marty felt sorry for me and wanted to let me sleep as long as possible, so he didn’t wake me up til the very last second–at 5:30!!! I’ve tried to tell him before, I need a few minutes to just sort of shake out the cobwebs, much less a little time to pull on some clothes and brush my teeth. He really doesn’t get it–we tease him all the time about his “switch”…when he is ready to sleep, that’s it, just like someone flipped a switch. The first time I ever saw him fall asleep, he was literally snoring before his pillow compressed all the way. I thought he was joking around and started giggling, then elbowed him, to get him to stop snoring and give up the joke, only to discover he seriously was asleep!! He wakes up the same way-his eyes pop open, and he’s wide awake. That’s it, just like a switch.
Now with me, I have to spend 15-20 minutes just sort of getting ready for bed, then maybe read for a few minutes, then turn out the light and spend a few minutes on one side, more resting than trying to sleep, then finally turn to my other side, snuggle in and get the pillows and covers just right, then I’ll fall asleep a few minutes after that. I wake up the same way, kind of in reverse, with a few minutes lying there awake, but eyes closed, then finally open my eyes, then sit up and spend a bit of time on the edge of the bed, and even then, I stumble around with sleep weighing me down for the next few minutes.
Marty really thought he was doing me a favor letting me have every last minute of sleep, but he deprived me of my “waking” routine and it’s been pretty rough ever since, kind of like I never quite woke up. I planned to have a nice nap to make up for it, but it was one of those days where everything fell just right that I couldn’t nap much. I did fall asleep on the couch when I got home from taking him to work. Morgan woke me up about 8 am, and I got her some of her milk (she is absolutely addicated to Silk Vanilla Soy Milk), and we settled in to watch some cartoons. About 10 minutes later, I sat straight up when I suddenly remembered it was Monday and she had to go to school!!! She had last Friday off, so the last three mornings have been lazy ones, and I almost completely forgot school existed. Morgan is still young enough that she just loves school, and when she found out it was a school morning and we were behind schedule, she got extremely concerned about being late, so it was a hectic morning.
Rachael had to be at work at 11, so by the time I got home, took all my pills and put on some clothes (I drove Morgan to school wearing my pj’s), there wasn’t enough time for a nap. I dropped her off and had to go to the cancer center downtown for some bloodwork. By the time I was done, Rachael was already ready to come home, because of some screw up in the schedule, so I picked her up, got home finally, ate some lunch…and by then it was nearly time to pick up Morgan. Rachael did that for me, but still, I didn’t want to be asleep when Morgan came home, so no nap still. After Morgan had a little snack and rested some, we did her homework, and by then, it was time to go get Marty. Rachael is doing that for me right now.
It will be nice having Marty home at a decent time (he got off before at 7, but hardly ever left on time, so it was 8 or sometimes even 8:30pm before he got home). He’ll be home now by 5:45 or 6, most likely. We’ll be able to have dinner together, and he’ll have a little time with Morgan before she has to go to bed, so that part is nice, but BOY, does 6am come early! He works 10 hour shifts, so he only works 4 days a week, and one of those days is on the weekend, so he has Wednesdays & Thursdays off, which is nice. We’ll get Rachael’s car fixed this weekend, too, so if her work schedule will allow her to drop off & pick up Morgan that day, I won’t have to play 5:30am chauffeur; but, there will still be a few of them. All I can say is at least there’s little traffic that time of the morning!
Rachael came through her surgery and chemo with flying colors. The nurses all said babies and kids do really well, because they don’t know they’re not supposed to-adults with the same surgeries and treatments spend weeks heavily medicated. She had her kidney removed on Wednesday afternoon, was in recovery for several hours because of a blood pressure complication, but then Friday morning, she was out of bed, down the hall, and in the playroom. There were certainly times I could tell she was in pain, and other times I could tell she was F-L-Y-I-N-G HIGH on the pain meds, lol, but she just kept trucking anyway. Chemo was easy at first, but after just the first couple times, she did become pretty deathly afraid of needles. Can’t blame her–the needle itself hurts, but the stuff in the needle causes you to feel awful for quite a while. She got over it, though, and soon you couldn’t tell her apart from any other kid. We had to be really careful to avoid infections, especially chicken pox, so she stayed with some relatives of ours rather than day care (thank you, Aunt Bo, Ron, and Natalie!), and had to put off some of her vaccinations. Other than that, before you knew it, we almost forgot she ever had cancer. To this day, she remembers nothing, just bitches and moans about the scar. They did a beautiful job, with a plastic surgery closure, no outer stitches or ugly staple marks, just a clean line, but in her defense, it does span her entire belly. Barely shows if you ask me, but if you ask her, you’ll get a whole different story!
My husband at the time and I were the ones who really suffered. The stress was unbelievable. So many decisions, so many bills, so much worry. Rachael was the one who was sick, but she was also the one who got all the pills and all the attention. I’m pretty sure it’s the same way on my family now. I marveled in a previous post that everyone saw me as the silver-lining-girl, always seeing the bright side, when really, I am a confirmed, nearly card-carrying pessimist. I really think the reason for that is I am the sick one. Yep, I’ve got cancer. Yep, it’s ultra-aggressive. Yep, the symptoms and the side effects are just horrifyingly awful. But you know what? When it all gets to be too much, I take a handful of pills and a nap–and thanks to the handful of pills, I sleep like a rock, sometimes for hours. Yep, sometimes I’m up at 3 in the morning throwing up (or the other end, which comes with cold sweats, cramps, and sometimes even near blackouts), but it lasts a few minutes, the meds kick in, and then I watch a couple episodes of Robot Chicken or Boondocks, or catch up on some of my beloved monster movies (mostly vampires and zombies, but werewolves are a close third) on the DVR.
It’s my husband Marty and my daughter Rachael who are bearing the brunt of the stress. They see the pain, they worry that I don’t eat some days, they get the what-ifs and the anxiety that goes with them, they wake up to unpleasant noises at 3am, and they don’t have handfuls of pills or time to take off work for a nice long nap. They have to drag out of bed the next morning and go through all the motions no matter how little sleep they got or how they feel. They hardly even get to enjoy their days off, as they spend them going to the pharmacy, taking me to appointments, and just generally running, trying to keep the house pulled together pretty much without my help. My mom even, halfway across the country, had health issues of her own with an emergency ER trip and resulting hospital stay complete with a surgical heart procedure–and didn’t tell me because she said she figured I had enough to worry about, and didn’t want me to worry about her. Guess she’s learned it already, already has the wisdom–it’s the stress that’s the hard part of being ill, and it’s the family members who get the stress, not the patient. Being sick is the easy part.
Ok, so I mentioned that my oldest daughter, Rachael, now 23, had Wilms’ Tumor when she was 8 months old. Wilms’ Tumor is a rare cancer of the kidney or sometimes the brain that is only found in very young children. They are born with it, and rarely live past 5 if it is not caught early and cured. It is pretty much an all or nothing kind of cancer–if you catch it early, it is nearly 100% curable. If not, it is 100% deadly. It is worse when it’s in the brain, but it can be just as deadly in the kidney.
I turned 21 years old the day after I had Rachael, so I was on the young side. I was married and we both had good jobs with insurance, but once she was diagnosed with cancer, I had to take off work for nearly a year (more would have been better, but we HAD to have the money). As I said last time, I found it by waking up one morning to find a HUGE lump in her stomach. She was about 26 inches long at the time, and her weight was down to 12 pounds because she’d been losing at an alarming rate for the past few weeks. I didn’t know it then, but the lump was a tumor, and it turned out to be 8 inches by 6 inches by 7 inches–about a third of her body size! The weird thing is that I didn’t feel any kind of lump the day before–it was just there one morning. That whole month had been weird–we’d been to the doc a thousand times and the ER a few times. One of the trips was at 2 in the morning. She’d been shrieking like a banshee for what seemed live forever. She didn’t seem to want milk, so I gave her some fruit punch. A few minutes later her diaper was wet, and it looked like I had taken the fruit punch and just poured it straight into her diaper. For a second, I thought it was blood and just about lost it, but then I realized it was too bright for that–it was simply unprocessed fruit punch. The stuff had literally gone right through her without her kidneys even trying to do anything with it. I called the doc, took her to the ER, and they were just as stumped as I was, though they didn’t exactly admit it. That was only a week or so before I found the lump, and they couldn’t find a thing wrong with her.
That’s the weirdness I was discussing earlier about cancer. It doesn’t really come with a calling card until it gets pretty advanced–just weird, vague symptoms that could be nearly anything. Rachael had her 6-month checkup with our doc and passed with flying colors. Then all these crying fits, weight loss, and weird ER trips started kicking in. Like the the doctors say, when you hear hoofbeats, think horses, not zebras. So when they started seeing the symptoms, they thought viruses and lactose intolerance, not cancer–right up until the day she woke up with this huge lump in her belly.
My husband was at work that day and even though it was late April in Dallas, Texas, it was cold as heck. Just the past Sunday, we had had a blizzard–A BLIZZARD in Dallas, Texas in late April. When my husband went to work that morning, I had changed Rachael’s diaper, fed her, put her in bed with me, and dozed off again. When I started to wake up, my hand was on her tummy, and as I came fully awake, I realized something wasn’t right. There was this lump. This BIG lump. I’m 21, fairly smart, and have seen a lot of docs in my time, but this is my first infant. I don’t know what to do. So I call my mom. She winds up saying “whatever you think is best”. I call my husband, he says the same thing, word for word. I call my mother-in-law, who is a surgical nurse. She says the SAME thing, word for word. Sigh. Lot of help. So I call my doc. He isn’t available, so I talk to whoever is covering him, and basically get the same thing I’ve been getting all morning–well, you can take her to the ER if you think you need to, or you can wait til tomorrow and take her to the doctor’s office; you’re the one who’s seeing her, you’ll have to make the call. Oh geez, thanks.
A trip to the ER means several hours and a lot of expense, despite having insurance. The thing that’s really tripping me up is she’s acting fine, no fever, no crying, no symptoms. But finally I think maybe she had appendicitis and it burst and walled off–only explanation I can possibly think of for such a large lump. So off to the ER we go, and I was right–several hours. What made it really hard for me is we must have seen a dozen nurses and at least 4 doctors. EVERY single one of them asked me “what made you bring her in today?” Now, I understand they were asking this because they wanted to know what the “last straw” symptom was, the symptom that tipped me off that something was wrong, as knowing this helps with the diagnosis. Then, though, because I had been so ambivalent about whether this actually warranted an ER trip, what my insecurity heard, every time, was “I don’t see anything wrong with this child, what in the world made you decide to waste our time here?”
I figured out after a while that was not the case. When my husband got off work, he joined me, and started making phone calls that we were there. My parents and my in-laws both showed up. By that time, they had done a sonogram, and even I could tell with my untrained eye something was very wrong. There was this huge black spot on one side of her belly, didn’t look anything at all like the other side. The radiologist doing the sonogram just got quieter and quieter, wouldn’t make a peep or give us any hint.
Once that was done, we went back to the ER room to wait, where our parents joined us. This time, they didn’t send in the ER doc, they sent in the pediatrician on call–the specialist–to tell us what was going on. She told us they’d seen a tumor, and it was either Wilms’ Tumor or possibly Neuroblastoma. I noticed my mother-in-law, the nurse, turn green–because, of course, she knew what that meant. I found out later that when she learned about Wilm’s Tumor in nursing school, they hadn’t found much of a cure for it, and she thought it was almost always fatal, and Neuroblastoma was just as bad. My mother-in-law was convinced this baby would not survive.
In the meantime, I was still a little in the dark. The big “C” word hadn’t entered the conversation yet, so I asked “are either of those malignant?” The doc had no choice but to tell the truth, “yes, both of them are. We need to admit her to the hospital right away for tests. Would you prefer to take her by car or by ambulance?”
The doc kept talking after that, but to this day, I couldn’t tell you what she said. I was still there, still sitting upright, still holding Rachael in my arms, but I was gone and I can’t even tell you where I went. Wherever it was, it was dark and intimidating and there was little noise, apart from the buzzing noises that must have been the rest of the people in the room talking. I don’t know how long I was there, but the only reason I came back from it is that everyone in the room started moving and we went home to pack for the hospital.
I hadn’t done laundry in who knows how long (I worked 40+ hours a week and had an infant who rarely slept–housework was NOT my first priority!), and just had piles of it everywhere. I had to pick some of the less dirty things out of the hamper and throw them in the case. I was actually quite calm. I remembered toothbrushes and a change of underwear (I did have some of that clean, thank the stars), and a few things for Rachael. I called and left a message for the newspaper to be stopped, and made a note to my husband to have the mail held at the post office for a while. I left a message on our voice mail that we would not be checking mail on a regular basis (this is LONG before cell phones), but that we’d get back to them as soon as possible. I listened to that message later. My voice sounded like it had come from the grave, absolutely dead, no inflection, no life. It seemed to me and everyone around me like I had it together and was calm and functional. I guess I was, but I was doing it from instinct or memory, because I was still living in that dark place, wherever that was.
So my mom is probably going to read that last post and be upset with me. I didn’t really mean it to upset her, that’s just the way I saw it. Everyone’s mom drives them nuts at some point, I’m pretty sure. Believe me, when you have a concussion, that’s the time! But after a couple days, they went home, leaving my nephew (19), my son (18), and us (me, Marty, and our 6-year-old).
The boys apparently had been bickering some, and everyone was worried about it upsetting me, but somehow, through the concussion fog, I missed it completely. They were getting along fine as far as I could tell, LOL. Maybe there are some good points to having a concussion! My nephew and my son are more like brothers in the way they act together and as much as they’ve been together, so fighting is just a natural part of it, but there’s a lot of closeness there, too. I guess that makes the whole relationship a lot more complicated–remember, my nephew is my nephew biologically, but legally my brother, so he is already both cousin and uncle to my son…and now he’s his brother, too. I always laugh at those on Jerry Springer–I have a better story than any of them!
The next days were pretty quiet, mostly filled with video games. It’s amazing how much media we’ve all become used to using simultaneously. At any one time, two of the boys (there are three ‘boys’ total, my husband being one of them) would be playing a video game on the tv (usually killing nazi zombies–all the people who object to violence on video games seem to just not care about nazis or zombies, you can kill as many of them as you want; so someone came up with the great idea of combining them, and it’s one of the most popular games out there!) while the other one played some separate video game on a laptop, and all the while, my 6-year-old, Morgan, was in the other room on her computer games, while everyone in the house had a cell phone that constantly received not only calls, but also all of our email. I can’t tell you how many beeps, blips, bells, bits of songs, excerpts of sayings from tv shows, xylophones, and various unidentifiable sounds went off about every 30 seconds. One day, a real phone rang on a tv show, and Morgan had to ask what that sound was!
I took advantage of the relative quiet (if you can call living in a house filled with a constant technological symphony quiet) and retreated to my couch nest. At this point, everything still seemed kind of surreal. I didn’t really feel like I had cancer–maybe the concussion helped fog that over, I don’t know. Thing is, I had been feeling more ill than usual before I was diagnosed, but we attributed it to the rheumatoid, moving to a new place, just general stuff. It really was just an increasing fatigue more than anything. I always expected that, if I had cancer, I’d wake up one morning dramatically sick, knowing something was severely out of whack. I suppose I should have expected it to be more like creeping up on you, as that makes a lot more sense, but that’s not what I had in mind.
I think I know why I felt like that, though–my oldest daughter, Rachael, who’s now 23 & fine health-wise, had Wilm’s Tumor, a cancer of the kidney, when she was 8 months old. She had been desperately sick for two months, several ER trips, losing weight at an alarming rate, the docs had tried everything, thinking she had some kind of bad infection, nothing was working. She never slept, cried all the time. Of course, this was my first child, and for a long while, when I complained about it, everyone told me it was just colic, that’s the way babies are, and patted me on the head with that knowing look, like I was just a first-time parent who didn’t know how hard it was. But I knew it was something much worse than usual–this just couldn’t be what everyone went through, there was just no way. Finally, my doctor suggested switching her from regular formula to soy formula, and she gained a whole pound overnight! We were all so relieved, because at 8 months old, she had lost 3 pounds, going from 14 pound to 11. She was 8 pounds, 12 oz. when she was born, so she was well on her way back to her birth weight! We all (including the doctor) breathed a sigh of relief, and thought we’d finally found it. She was just lactose intolerant. But the symptoms returned, although she kept on weight a little better. The doctor kept trying different things, and then one Sunday morning late in April of 86, I woke up to find Rachael had a HUGE lump in her stomach. My husband was working that day, I was home by myself. I called him, my mother, and my mother-in-law for advice–what to do? She seemed to feel fine, but had this huge lump in her stomach. Is this an ER trip? I tried calling the doc, but he was unavailable, and every single person I relied on most for advice all said the same thing–well, what do you think? Great. Lots of help. I finally did make the ER trip, and she did have cancer. I’ll tell you more about it next time, but the whole point of this rambling segue is that I fully expected a big, dramatic lead up and symptoms to signal cancer. Having fatigue and finding it on a routine mammogram just didn’t seem like a real disease, you know?
