Life is Messy

Hello, friends. I’m doing OK. The past 10 days I’ve been adjusting to my new normal. My health is improving ever-so-slowly. The pain is still lingering from the muscle injury, but I’ve been seeing the physical therapist daily the past 2 weeks and I feel that has helped tremendously. My range of motion is improving, though I am still unable to tie my own shoe (on the left foot) so I’m wearing sandals. I’m starting to decipher which pain is from the muscle injury and which pain is from the knee surgery. I was supposed to have a follow-up with the ortho doctor but I felt that I couldn’t distinguish between the pain so postponed that. Speaking of doctors though, I’ve been seeing quite a few of them.

Monday was my appointment with my primary care doctor. Dr. Ciechna is in the same building as my OB/GYN. In fact it was her (Dr. Delind) who recommended that I establish care with a family doctor back when Clayton was born…and then again after my hysterectomy last year. She recommended Dr. Ciechna because he had lots of kids and she thought I would like him. So last year, I went and met him and decided he was great, and had all the kids make appointments with him, too. He did back-to-school exams for the little ones. Russ changed over to him too, and I was pleased that we had a family doctor again after many years of just going to the guy in town that never had a wait to schedule an appointment for sports physicals annually for my big kids. It wasn’t until I met with him this week though, that I learned what a disservice I had done to myself and my family by not doing this sooner. I came in with my stack of paperwork – the folder from Morris Hospital complete with the disk of my scans from that first ER visit; the spiral bound book that was given to me at RUSH in preparation of the kidney surgery; a bunch of pamphlets about Birt Hogg-Dube Syndrome from the genetics counselor including the clinical introduction that I was told should be given to any of my doctors; my chicken-scratch list of medications that I’ve been taking noting time, dosage, other vital signs as well as side effects; my genetic testing results; and some miscellaneous mail that seems to have gotten put in with my pile of important papers. They told me at the emergency room to follow up with my primary care doctor back in July. I did call and leave a message, but honestly, what the heck was he going to do about a mass on my kidney anyway? So I really didn’t think much about it, and kept moving forward with the urologist and then Dr. Stephenson at RUSH. I did put Dr. Ciechna’s name down whenever they asked for my primary care doctor, but since I really had only met him a handful of times a year ago, I didn’t really expect much. One day, I got a call from a home health care place (not the one where Nurse Bob was from) and they sent a phlebotomist to my house to draw some blood…and she said it was Dr. Ciechna who had ordered it. So I called to follow-up again, and that’s when I scheduled this appointment. As I was trying to summarize the last couple of months and explain the BHD as I understand it and ask about the medications and the weird rash that popped up on my left leg, Dr. Ciechna just took right over. He listened and understood, he formulated a plan, he prescribed a couple of medications to help and made sure I stopped taking the extra ibuprofen that might have been the cause of the rash. I showed him the report from the latest scan from RUSH (that I don’t have on a disk) and asked questions about the lung cysts and nodule that was mentioned there. He wrote up a referral to a local pulmonologist that he knows and also one for a dermatologist in Morris. I left his office feeling like I had just been in a huddle with the quarterback and he was positioning my team of doctors that are going to be taking care of me…or maybe he would be the offensive coordinator? Whatever. It’s 2am, so if my analogies don’t make much sense, you’ll have to forgive me. Or just laugh…that’s fine, too. 🤣

Dr. Ciechna’s office is like 5 minutes away from my house. There’s only 1 stop light between his office and my subdivision. Before I even got into my neighborhood, my phone rang and it was someone from the pulmonologist’s office. They had gotten my referral from Dr. Ciechna and wanted to schedule something. I WASN’T EVEN HOME YET! So we did, and Dr. Walsh had a cancellation for Wednesday and I took that appointment. Later that day, I got a call from the dermatologist and was able to squeeze into one of her cancellations for an appointment on Thursday. Since it looked like this week was going to be a little busier than planned, it reinforced my determination that I wasn’t going to take any more narcotics even though Dr. Ciechna did write a Rx for some Norco. I didn’t want to have to be driven around, and frankly, I needed the extra help at home from the big kids to help supervise remote learning which was shaping up to be an even bigger disaster than my healthcare worries, believe it or not! Tuesday I had to take Amy to the dentist, she has been complaining about a toothache…but only at bedtime. I’m glad I believed her though, because they took an xray and saw a big cavity on one of her back teeth. Had to get a referral to the pediatric dentist in Joliet again (Dr. Rita) who had filled the girls cavities a year ago, and as luck would have it, she had a cancellation that afternoon. It wasn’t an appointment to have the cavity filled, just another consultation and scheduling. Dr. Rita did prescribe an antibiotic though that should help with any pain before Amy’s next appointment. I am pleased to report that at age 6, Amy is SO good at taking her medicine. I imagined (or remembered) how awful it was to try to force-feed kids medicine 3x/day for 10 days, so this was a pleasant surprise.

So Wednesday rolls around and I find my way to Dr. Walsh’s office. If anyone is wondering, a pulmonologist is a lung doctor. I didn’t know before all this started, so don’t feel bad. Dr. Stephenson had told me at our last appointment that I would need to see one, but I kind of felt like he was downplaying what the scans had shown in my lungs because it wasn’t as pressing a concern as the kidney tumor. The radiologist that read my CT scan with contrast at RUSH summarized 4 things, first was the kidney tumor, of course. But the second thing on the list was “Numerous bilateral basilar predominant pulmonary cysts of varying size and morphology.” And the 3rd thing on the list was “Focal 1.4 cm hyperdense subpleural nodule, possibly a calcified nodule.” Neither of those sounded like something that could just be brushed aside. So armed with that same stack of paperwork that I brought to Dr. Ciechna, I came to Dr. Walsh and recapped the last 2 months with him. I’m getting pretty good at summarizing my story, though as you’re reading another long blog entry, I know you are doubting that!! Dr. Walsh’s eyes lit up a little when I told him about my Birt Hogg-Dube Syndrome. He explained that it’s one of the questions on the board exams, so he was familiar with it because of that but had never treated anyone with it. Rare diseases are fun for doctors, apparently! They loaded up the disk from Morris Hospital, and even though that was just an abdominal scan (not chest) he was able to see the cysts in the lower part of the lungs that were captured there. He also was able to see the hyperdense subpleural nodule. He pointed them out to me and told me what he would do. We need to watch it. Since that scan was from July, he wants me to have another scan done in October so we can see if that nodule is growing. It’s outside the lung (that’s what subplueral means, I guess) and if it changes at all, he might want to take a biopsy of it. The cysts in the lungs did look a little worrisome to me, but Dr. Walsh seemed to think they were OK. OK as in, I didn’t need to have another surgery or anything anytime soon. He explained the spontaneous pneumothorax and told me signs to watch for. He also advised that I don’t go skydiving or scuba diving. I haven’t actually written out a bucket list, but if I had and those were on it, they would now have to be removed. I felt comfortable and liked Dr. Walsh, he seems very good and leaving his office I mentally checked “lung doctor” off my list.

Thursday morning I headed to Morris to see Dr. Jenkins. She’s the dermatologist. The only one around, it seems. I had actually seen her once before, it was 4 years ago. When Clayton was just a baby, I noticed a lump on the back of my head. Dr. Jenkins said it was a lipoma and we could remove it…but at the time she wanted to put me on antibiotics before the procedure and I was still nursing Clayton. So she said not to worry about it, just come back after he weened. Haha. That kid was on the boob for 18 months! So I forgot about it. And it was JUST a lipoma. And yes, it is definitely striking me as something that I should have paid more attention to. BHD literature doesn’t say anything about this, but is the genetic mutation that makes me have weird growths elsewhere maybe part of why there’s a mysterious lump on the back of my head? ANYWAY…back to my appointment. All the doctors offices have been very good, they all have to ask the same Covid questions before you come in. You wait in your car until your appointment time so there’s not too many people in the waiting room. I’m used to the new drill already. Dr. Jenkins office doesn’t seem to be. They had me fill out some updated paperwork and then told me to wait in the waiting room. For a half hour. Maybe that isn’t a big deal usually, but the waiting room is small, and there were 5 other people. And my muscle injury wasn’t cooperating and I couldn’t sit, it was too uncomfortable, so I was standing in the corner. They took back 2 other patients who came in after me before they finally called me back. Slightly annoyed, but still appreciative that I was out of the house without any kids, I started filling in the nurse about what was going on. Then I had to get undressed and wait for the doctor. For another 15-20 minutes. When somebody came in, it wasn’t Dr. Jenkins but her new physician’s assistant. She was very nice and everything, but kept telling me since she was new she couldn’t do anything and Dr. Jenkins would be in soon. She did get very close to my face with her magnifying tool to study the bumps on my face. They aren’t that bumpy or noticeable, really. Or maybe I’m just used to looking at them. Anyway, when Dr. Jenkins came in and we rehashed the story again, just like Dr. Walsh, her face lit up when I said Birt Hogg-Dube, and she also said that was a question on her board exam, too. What I thought were fibrofolliculomas she diagnosed as angiofibromas along my nose. That’s another BHD thing. The tiny white non-zit thing under my eye she called a “milia” and offered to remove that, though it is benign in nature. Since I’m on blood thinners still from the kidney surgery, she said we should wait a month to do that or else I would end up with lots of bleeding and bruising most likely. They did a full body scan which I will have to do regularly going forward, and nothing else popped up. Until she got to the lump on the back of my head. Apparently, she had taken good notes the last time and it was 1.7cm last time I was there 4 years ago, but now it’s at least 3cm. And because it’s that big, she has to refer me to an ENT doctor. I’m still a little uncertain as to why an ear, nose, and throat guy would be the one to see about a lump on the back of my head…but I’m not a doctor. So one more referral to go, and hopefully that will be my team of doctors. I’m thinking I might also need an oncologist, but I will wait and see what Dr. Stephenson says on Monday when I go back for my follow-up with him.

As of right now, since I was curious and just stepped on the scale, I’m 14 pounds less than the day of surgery which was one month ago today. So if you count the extra 30 lbs. that they put on me with the IV fluids, I’ve lost 44 lbs. in a month! I am moving much better, and usually you can’t tell that I have a limp except when I’m really exhausted and when I’m up in the middle of the night. I have been able to do a little grocery shopping, though I am much slower than I used to be. I’ve been spending time in the kitchen, trying to cook more since we were eating out way too much and I was tired of paying for crappy food. I’m also spending a lot of time out on the back patio. I know I promised a blog post with before and after pictures, but I’ve been spending my late nights watching season 3 of Ozark, and also I discovered the BEST live stream ever. It’s a South African safari. They are literally driving their jeeps around looking for cool animals and then talking about them. It’s amazing. Baby elephants, baby cheetahs, crocodiles, water buffalo, and LOTS of lions, leopards, hyenas, wildebeasts, even a pangolin. And since it’s on the other side of the world, it’s happening when most normal Americans are sleeping. During the day between physical therapy and all these other doctor appointments, I’m helping the girls with their school, trying to keep Clayton entertained enough to leave them alone, and I’m trying to squeeze in a nap whenever possible. Though my 2-hour limit in the bed has been stretching to 3-5 hours sometimes, I still have been unable to get a good 8 hours all at once. It’s ok though, I’m adjusting. I feel better. I know I’m not all healed yet, but I am confident that I’m moving in the right direction, one day at a time.

I’m fairly certain this will be another long blog. I wanted to think that 9 days in the hospital albeit long, was surely enough time to put me back together. That hasn’t really been the case. I am trying to stay positive and find God in the details, because I know that’s where he likes to show Himself. Or maybe that’s where I like to find Him. Anyhow…

I was released from RUSH on Saturday, August 29th, my parents 50th anniversary. I shared on Facebook how awesome it was that the timing turned out like it did. Sometimes I wonder if I willed it to happen that way. I was SO looking forward to their big day and the little surprises that I had planned for them. No regrets there, it was awesome! Definitely a feel good day. And honestly, the last 2 days in the hospital, I wasn’t in much pain at all. Or perhaps I just got used to the pain and it started registering as numbness instead of pain. My left hip/butt feels weird. I don’t know a better word to describe it. I’m sure most people reading this know me, and I’m not a small person. My hips are huge and we can say it’s because I have 7 kids and had a child on one or both hips for many years. It’s a bit of a sore spot to my ego, I am embarrassed that I can’t fit into roller coasters, airplane seats, and most seats at sporting events. I’ve had to request un-armed chairs at restaurants and it has become a standard that I ask for a seatbelt-extender on airplanes. Anyway…these hips don’t lie. (Who sang that?) When I woke up from surgery and had that pain in my left hip/butt area, the actual feel of my body changed. I’m used to a normal amount of jiggle, if you will. My right side is still my normal jiggle. My left side, however, feels like a very tightly packed sausage for lack of a better description. To the touch, you can feel a difference in my left cheek and my right cheek. Not that I want you or anyone else touching my cheeks. Just Russ. And my physical therapist. The tightness seems to be the source of my pain. And apparently, in the hospital, they were very good at pain management. I have always been kind of a badass. I like to think I have a high tolerance for pain. I’m also acutely aware of the possibility of becoming addicted to pain killers because I read a lot and watch documentaries for fun. So after the c-sections and even the hysterectomy, I may have gotten those narcotics Rx’s filled, but I didn’t use them. I switched to over-the-counter stuff and just put up with it until I was better. That never seemed to take very long. Fast forward to today…I’m not such a badass after all.

I had left the hospital Saturday with a paper Rx for the Oxy that I had been taking at the hospital, but I told Russ that I thought I’d be fine with just Tylenol. By Sunday morning, I discovered that was a lie. I had Russ go to Walgreens as soon as they opened and get that Oxy. The Rx was for 15 pills. I think Dr. Stephenson thought I was a badass, too. But I had a follow-up appointment scheduled for Wednesday, so I thought that I would be fine until then. And I was, kind of. Those first couple days were like honeymoon time. I was so glad to be home. My mom and my friend Dianna had stocked my fridge with meals that we could just pop in the oven. And I was so excited to be home and not eating hospital food, I wanted to be in the kitchen. I went right back to making the kids eggs and toast for breakfast every day. I decided to use Instacart for grocery shopping and THAT was fun. I made a breakfast casserole, lunchmeat sandwiches, some chicken salad after reading some recipes online…I was good. My fridge was in danger of becoming a science experiment gone wrong though. We dumped a bunch of leftovers. Russ had been ordering a lot of Uber Eats because his company gave him a large gift card when they heard about me being in the hospital so long. I still have friends asking me to let them help (and I am so grateful!) I made it to Wednesday (9/2) without running out of the pills. I was alternating taking them and Extra Strength Tylenol just like they did at the hospital. I was instructed to keep giving myself the shots in my stomach to prevent blood clots. (Lovenox) I was instructed to resume my regular medications – Prozac (happy pill for my depression), Meloxicam (anti-inflammatory for my knee pain/arthritis), Hydrochlorothiazide (water pill for my blood pressure), Xanax (as needed for anxiety). The only difference in my at-home regimen and when I was at the hospital is the IV medications, I think. So they would occasionally give me Dilaudid which is 3x stronger than Morphine. As I have been researching all this since coming home, this drug lasts a long time especially in patients with renal impairment. I think that’s why I was feeling so much better in the hospital. In my non-professional opinion, towards the end of my stay they weren’t giving it to me as regularly as in the early days post-surgery, but because of my renal impairment, the drug stayed in my body up to 40 hours and took the edge off my pain. Knowing or believing this does very little to help my current state of pain. I don’t want to dwell on my pain or the medications, but I am trying to understand the correlation between them.

When I left the hospital, they arranged for me to have a Home Health Nurse come to my house and check on me. At the time I thought it was purely because of the drain site that kept leaking until the day I left the hospital. I got a call on Sunday from my nurse who scheduled a time to come see me Monday morning. His name was Bob. Nurse Bob had a ponytail. I told him that the drain hole seemed to have closed up and I didn’t know if I needed him, but he came over anyway. He was a nice guy, who also has 7 kids, so we joked about all the things people say when you have a lot of kids (Don’t you know what causes that? Are you Catholic? Boy do you have your hands full! Etc., etc.) He took my blood pressure and temperature. We talked about my condition and how my pain was doing. He assured me that the risk of becoming addicted was secondary to the helpfulness that the pain medications would have on my healing. He said that my butt/leg pain sounded like sciatica, and when I researched that, I began to believe it. The way that the pain radiated down my leg and around the knee made sense. The tingling in my left hand and arm seemed to make a little more sense. Nurse Bob chastised me for picking at my surgical scabs, Russ enjoyed that because he had been saying the same thing. I think I’ve shown great restraint. Unless you are a scab-picker like me, you have no idea the self-control that I am exerting on a daily basis here. I’ve got 6 incisions from the surgery, the longer incision where the tumor came out, plus the drain hole. That’s a lot of scabs. And some of them are really crunchy. OK back to Nurse Bob…he said I should be OK until my follow-up Wednesday with Dr. Stephenson, and said he would come back again to see me on Thursday. I’m not really sure what happened on Thursday, but he called and said he would come Friday. Then he was running late on Friday. And then he never showed up. I might have messed things up when they called and said they were going to send over a physical therapist. I told them I would rather stay with the lady I had been seeing (for my knee) at the Pro-Motion place in town here right across the street from our subdivision. In fact, I had called her and made an appointment for 6pm on Thursday (she had a cancellation at that time) and the home health nurse said ok so you don’t need home health care? And I think I said OK. And then the next day Bob didn’t show up, but it was weird that he didn’t call. No regrets though, because let me tell you about my physical therapist.

Jane is her name and she has a delightful British accent. She and her husband own this physical therapy center in Minooka. They are actually in the process of building a new office right across the street from their current one which would put them on the same side of Ridge Road as me. One day, when I’m able to walk normally again, it will be an easy walk to get there. I started seeing Jane in early June when they first opened back up after Coronavirus shut them down for a couple months. I had a referral from the orthopedic doctor who had given me a cortisone shot back in February just before my trip to AZ with Nora. That seems like a lifetime ago. ANYWAY…because of the pandemic, I wasn’t able to seek the PT until June. And when I followed up with the ortho doctor he did the MRI, found the meniscus tear and we scheduled surgery to correct that. Jane warned me that I should get a second opinion. I called for one, but was a little impatient and decided that I had no reason not to trust Dr. Meyer who was recommended to me by my chiropractor who I trust and respect. Jane said that surgeons just like to cut. I think Jane was right. The meniscus surgery was supposed to be very simple, 1 or 2 days with crutches afterwards and then take it easy…and I could bowl again in 3-4 months. However, after the knee surgery, my pain was much worse than before. While he was in there (laparoscopic in there) Dr. Meyer thought he would “clean up” the arthritis that he saw. The surgical pictures look good. I think he did a good job. But it hurt like hell. And when I went for a follow-up (and don’t get me started about this, but I saw his physician’s assistant not the actual doctor for both the one week and one month follow-up visits) and she described what he did as “taking a weed whacker and smoothing out where all that arthritis was” and in doing so, it awakened many nerve endings that were now screaming and making it difficult for me to walk and climb stairs on a constant basis instead of just an intermittent basis which is what it had been like pre-surgery. So Jane was helping me cope with that. I was seeing her 3x/week and I felt like I was making progress. I was once again able to climb stairs normally and my mobility was really improving. Then, out of nowhere – BAM – kidney tumor. And everything went sideways. Even so, I was looking forward to going back to see Jane again because after she was working wonders for my knee pain, I was pretty sure she was going to help me with this muscle injury pain that I’ve been experiencing since the kidney surgery. I was right. This woman, bless her heart, massaged my butt. Hip/leg/gluteal area whatever you want to call this general area, she massaged it for a good 30 minutes. The tightness lessened and when she was done she tried stretching my leg in different ways. It was still painful, but previously stretching at all was impossible. So I think it’s working. For a little while at a time anyway.

I jumped ahead a little bit here, because I saw Jane on Thursday. I didn’t mean to skip right over Wednesday. Wednesday was a big day – my follow-up with Dr. Stephenson at RUSH. I was supposed to find out the pathology report from the tumor. I enlisted Nora to be my chauffeur for the day because I am not supposed to drive while taking narcotics. I might have bribed her with Lou Malnati’s. Who am I kidding?? She was having Lou’s whether she wanted it or not. She did though, so it’s all good. Nora is a very good driver. We got to the hospital on time, made our way up to the urology office on the 9th floor and there wasn’t even anyone else in the waiting room. Big difference from the last time I was here. Whatever though, good for me – I shouldn’t have to wait! Well…they took me back right away, but I did end up waiting in the exam room almost an hour for the doctor to make his appearance. Nora said the waiting room filled up while she was out there, but she was busy editing photos on her laptop from her last photo shoot, so she was good. I was playing games on my phone and studying the posters of all the male anatomy again while I paced because sitting or laying down for too long just wasn’t comfortable. They should really have a designated room for their female patients with more appropriate anatomy posters. I mean women have kidneys too, ya know. Anyway, when Dr. Stephenson came in I noticed a bit of beard growth behind his mask…he might be part Gogliotti. He checked my incisions and said they looked great. He pointed out a stitch that should have been removed already. He didn’t do it, but I took that as permission to remove it myself when I got home. That’s not quite as satisfying as scab picking, but it was fun. I told him about my pain, Tuesday had been a very bad day. I showed him my little scratch paper medical chart that I was keeping with the times I had been taking my medication. I told him Nurse Bob’s opinion that it was sciatica pain and told him that I thought it sounded legit after reading up on it. Dr. Stephenson disagreed, he said it was just the muscle injury. And it was just going to take time to heal. He wrote me another Rx for Oxycodone and said to call if I needed more. He wants to see me back in 3 more weeks. He is guessing that by then, I’ll be back to normal. I asked if he was telling me that one day this pain was just going to stop like magic, and he said well no it will just lessen as time goes by. I was a little skeptical, but I had no reason not to trust this guy. He saved my life! Everything that I had prayed for – full removal of the tumor via laparoscopic robot-assisted surgery: check. Plenty of healthy kidney left behind: check. I didn’t die on the table: check. One day while in the hospital when Dr. Stephenson came around, I had asked for a selfie so I could show my kids. He said he wasn’t dressed for it that day. I disagree because he was wearing shorts and a t-shirt, and looked like he might have just come from the gym or maybe was heading to a golf course…but he promised a selfie at my follow-up visit, so here it is.

The disappointing part of the visit was that Dr. Stephenson still hadn’t gotten back the pathology report from the lab where they sent my tumor. I don’t know why this is a disappointment, but I guess I’m hoping they will say – it was just benign, a giant cyst, nothing to worry about going forward. That’s not the case though. Dr. Stephenson is fairly certain that it was malignant, but he removed it all regardless. It was encapsulated and there was no sign of anything spreading. I really don’t know what comes next. I had orders to have blood drawn from one of the oncology doctors that had been there the day before I was released. I think she was oncology. Anyway, she told me to have the blood drawn when I come in for my follow-up and then schedule a follow-up with her afterwards. I’m a little stuck there, because when I called to try to do that, the receptionist in oncology and radiation had no idea who that doctor was. She tried to look her up by name and she’s a resident, but not in that department. She said try urology. Dr. Stephenson wanted some of my blood too, so I was able to just tack those new orders on with the ones that I had already scheduled the appointment for and Nora and I headed down to the 4th floor where the lab was located.We were early for my appointment, but luck really was on our side. Just a few people in the waiting room and they called me back relatively quickly. A quick poke and a few vials of blood later and we were on our way. Next stop – Lou Malnati’s!

Now that I’ve eaten there twice, it seems I have a “usual” table. To go along with my “usual” order which is the deep dish Malnati Chicago Classic. We were starving though and Nora asked if we could get an appetizer while we waited for the pizza. Knowing this was probably a bad idea, I said OF COURSE! And so we also had a giant loaf of garlic bread with 3 cheeses for the 2 of us to split. Nora ordered some pasta and I went ahead and got a large pizza knowing that I would enjoy the leftovers later on. While we were waiting for our lunch, I got a phone call from RUSH. It was the genetic counselor that I had met with back on 8/7. She had finally gotten the results from the lab about my gene mapping. As we expected, I do indeed have the same gene mutation as my Aunt Joanne, meaning I do have Birt-Hogg-Dube Syndrome. Since this wasn’t really surprising news, I didn’t have many questions to ask. We did discuss getting my children screened and apparently the lab might do that for free within the next 90 days. I scheduled another follow-up with the genetics counselor for the following Tuesday. I guess she will have even more information for me at that time. I’m guessing it will involve what type of regular testing and observation I will need going forward. The probability that I will develop another tumor is pretty high, that’s why we wanted to save as much of my kidney as possible. Knowing about my BHD though gives me an advantage, so I can be vigilant in my screenings and if/when another tumor starts to form, we will catch it before it gets to be as large as the meatball they took out of me this time. That reminds me. I asked Dr. Stephenson what the tumor felt like. Did he get to squish it? I told him that it looked like a meatball and he paused for a minute and turned his head and then said yes, that’s a pretty good analogy. So I’ve decided that instead of calling it by its official name “malignant neoplasm,” I’d rather think of it as a rogue meatball that just happened to settle on my kidney a la “On Top of Spaghetti!” Luckily, Nora’s pasta dish was just mostaccioli and didn’t come with any meatballs. We finished our lunch, and by finish I mean we basically wrapped up 90% of our pizza and pasta to take home, and then headed home.

But between Chicago and Minooka, there are a lot of places you could stop if, say, you wanted to find some patio furniture. So since I was feeling good, we did that. Russ said to buy a couch for the living room too since our current couch has been broken for years. We stopped at the Ashley Furniture outlet in Bolingbrook. I hope that my family will comment on this and fill me in on some more Gogliotti family history. I know that we aren’t supposed to like Ashley Furniture. And typically I don’t. We have bought from them before because I get suckered in by the free financing offers and how they throw together a whole room of furniture as a package. We got lamps, a rug, and coffee tables to go with our current couch. Seemed like a great deal…but the couch is crap. It had recliners in both the big couch and loveseat and well we are also kind of rough on furniture with 7 kids and a giant dog…all 4 of the reclining mechanisms are broken and it’s been through too much. It’s been spilled on, peed on, puked on, and I think it smells like dog so I very rarely sit on it. I’ve made the royal declaration that when Callie heads to the rainbow bridge, then I’m going to replace the couch (and the carpet on the stairs, in the hallway, and my bedroom.) This proclamation has now ensured that we are going to have the longest living Saint Bernard in the history of the world. Back to the story though…I was more interested in the patio furniture since the construction of my new patio had begun this week. I think that will deserve a blog post of its own, so let me just quickly say that has been a long time coming. And watching it come together has been as much fun for the adults in the house as it has been for the kids! In case you didn’t see Russ’s update about it on Facebook, let me do a quick cut and paste here of the first day when they were taking out the old patio.

So we need some new patio furniture. The old set was ruined by the hail storm several years ago. We tried to hang onto it as long as we could, made some chair covers and eventually the chairs just didn’t survive. The table seems fine and we have kept it out there on our slab of concrete but the backyard just hasn’t been used to its potential. We have that beautiful lake back there, which is FINALLY free from all the excess algae that has been plaguing it for the past 2-3 years. I never wanted to put up a fence because I didn’t want to obstruct our view. The afternoon sun is brutal back there, and we have no trees for shade or anything. So 3 years ago when I was having some landscaping put in the front flower bed before Liam’s high school graduation party, I asked for an estimate and a plan to be drawn up for a nice patio. The price tag on that patio plan was the deal breaker. So I put the drawing in my “someday” drawer and kind of forgot about it. Back to the story again…Ashley has a clearance section upstairs and that’s where we were directed when we asked about patio furniture when we walked in. So we found an elevator and wandered around up there. Of course when you’re looking for one thing, you can never find them…but we did see hundreds of couches. We sat in a few. I have had my mind kind of set on a leather couch which I think would be easier to clean, but we have always kind of wanted a sectional. I’d like something that all 9 of us can sit on for family meetings or movie nights. We found one! The couch was missing a cushion and when we talked to a salesman about it, he said we could order a new one so we had all the cushions. The new one wasn’t able to have a sleeper sofa in it (which was fine with me since I hadn’t even realized that there was a sleeper sofa in the one we were looking at!) After the order was all set in place, it was actually $300 less than the sticker price on the clearance one. SCORE! The selection of patio furniture was no good though, so I told Nora we would make one more stop on the way home to see if we could find some. The delivery for the couch is super delayed though (they are blaming Covid) so we won’t have our new sofa until late October. I think it will be worth the wait.

Near this Ashley outlet is an American Sale store. It’s next to the bowling alley in Romeoville right by Weber Road and I-55. I have been in there a couple times over the years. They have swing sets in the summer and Christmas trees in the winter. This day, they had an awesome selection of patio furniture and it was all on sale because it’s September in Chicago. The timing of our patio project is just one more little gift that I’m attributing to God who works in all the details. They had not just one but 3 or 4 table options that would accommodate my big ass family. We looked at all of them and settled on an awesome oval table with very sturdy-looking chairs that were wide enough for these hips of mine. The model had 8 chairs around it and we played with them and brought over another just to see if it would fit, and it did…so I ordered that 9th chair so all of my babies would have a seat at our patio table (unlike our kitchen table that only seats 8, haha!) And because our patio is going to be so much larger than the old one, we definitely have room for more furniture and I picked out a couple of swivel/rockers and a large deck box where we can store all the cushions. This will all be delivered this Wednesday and I can’t wait!

I was still feeling good when we got home, though I was pretty sure that was more walking and less resting than I should be doing. I told Russ that I thought the act of spending money was what was helping my recovery. The more I spent, the less I hurt! I probably don’t want/can’t afford to put that hypothesis to the test. The next day was my PT visit with Jane, and I was feeling great after that, too. Friday was the first day of our bowling league. Of course I’m not able to bowl and have handed over the secretary/treasurer responsibilities which I had for the past 4 seasons. Russ and I thought we just wouldn’t bowl until the Covid threat was gone and I was all healed, but as I was trying to get all the information passed out to the rest of the league, the more we talked about it, bowling was going to resume, and we are bowlers at heart. My dad (who occasionally goes by the nickname Grumpa) actually said he was looking forward to bowling. This was a surprise! So I sent Russ to go bowl with my parents and told them to all come over to our house for lunch afterwards. I had that Lou Malnati’s pizza (minus the one piece I ate) and heated it up in the oven when they were on the way. We had a really nice visit and they got to watch the landscapers as they continued to put in the stones for our new patio. I don’t want to spoil the big reveal with more photos now, so you’ll have to wait until I blog again about the patio transformation!

Back to my health saga…felt good Friday, but was still struggling as I had been. I can’t get comfortable at night, I will sleep in the bed for maybe 2 hours at a time. Then it feels as if all the fluids in my body are pooling in my hip/butt area and I need to get up and move. So I’ve been coming downstairs and sitting at my computer desk for a little while, and then pacing for a while, and then I might go back and try laying down again. The nights seem to last forever. I’m very vigilant about taking my pain meds, and as it turns out usually when I am woken up by pain, it’s time for another dose. I get a tingling sensation in my left hand, and sometimes will start to shiver even though I’m not cold. I don’t know what all of that means, but this has become my new way of life. It’s good that I’m getting time to blog without much interruption. I’m not feeling as exhausted as I thought I would during the day. I’m making a conscious effort to NOT do all the things. I feel like I’m just rambling here, so I’m going to end this blog here. If you’ve been reading along through all this, thank you. Please keep sending prayers for my healing and maybe some for a good night’s sleep, too!

I wanted to blog about this sooner, but I do not like typing on the ipad or the phone for that matter. So I waited until returning from the hospital. And then I waited a few more days until I had my post-op visit with Dr. Stephenson. Anyway…I did try to give general updates (and not too long for those kids of mine who don’t want to read a novel) through Facebook. But I will go ahead and try to document the whole thing. Thanks for processing along with me.

When I last blogged, surgery was scheduled for August 18th. That was the first available date, so I took it. The Saturday prior (15th) Russ drove me into the city where I had my pre-op labs done and my drive-thru Covid test. And then our quarantine started. After having the test administered, you’re supposed to go straight home and don’t have any contact with anyone outside your family. And if your family is not also able to quarantine with you (if they have to leave the house for work or come into contact with anyone outside your family) then they will have to keep a 6-foot distance from you until the time of your surgery. That means no sharing a bed or even any hugs…so Russ and the babies chose to quarantine with me, and Jack and Nora who had to leave for work kept their distance. I was getting anxious. Nervous. Worried. I trusted the plan, I felt confident in my surgeon, but I also am a realist. I know there are risks with all surgeries, and it became very important to me to have big talks with my kids. I wanted to go into surgery knowing that they all knew without a doubt how much I love them. I still get a little choked up. It’s morbid to think about dying and what you want your kids to remember about you. And it’s scary.

Someone from Rush was supposed to call me with a surgery time on the 17th. When I hadn’t heard from anyone by about 4:00pm, I decided I better call myself. The doctor said he would normally do 2 surgeries a day so it would be either 1st thing in the morning, or around 1pm. When I called the urology department, the woman who answered the phone was surprised that I hadn’t gotten a call yet. But she was able to check the computer and said that I was scheduled for 9:30am! She said I’d probably be getting a call from the scheduling secretary to confirm that and they would let me know what time to arrive and all that. But when I got that call, the scheduling secretary said the surgery wouldn’t be until 8:30pm. So I questioned that since I had just talked to the other lady, and was told that she would check and call me back. The 3rd person I talked to might have heard the anxiety in my voice, and I think she might have been about to give me a 3rd different time, but then stopped herself and said she would check again. I think she went straight to the big dog, because in a few minutes when my phone rang again, it was Dr. Stephenson (my surgeon) himself. He said they had to bump my surgery because the operating room wasn’t going to be available until 10pm and that he didn’t think I wanted him operating on my kidney at 4am. Hard to argue with that logic. So he said he was looking at his schedule and that he was going to put me in for 2pm on Thursday the 20th. I didn’t know if I should feel relieved or upset. But I think it was a good thing. And we embarked on 2 more days of quarantine.

By Thursday, I was calmer and not as anxious. Our arrival time was 12:30pm, so we left around 11am. OK we didn’t actually leave until much closer to 11:30am. I had a bag packed, made sure I had my phone, ipad and a charger. Change of clothes to come home in. And I brought my journal. That was about it. I wasn’t allowed to wear my contacts so I had my glasses on. You’ve likely never seen me in glasses, I wear them at night when I take out my contacts and that’s about it. So they are old and kind of ugly. But that’s my vanity talking. ANYWAY…we got to the hospital, dropped off the car at the valet, and made our way up to the 5th floor where the operating room awaited. We were ushered into a lounge where there were many people socially-distanced, of course, just waiting. This is where Russ would spend the next 12 hours or so. They had a vending machine with Diet Dr. Pepper and he had brought his laptop, so I was pretty sure he’d be just fine. Me, on the other hand…not quite as sure. But the nurse who took me back to pre-op was very kind, her name was Summer. I had to change into my hospital gown and ugly hospital socks. She bagged up my clothes and set them aside, but let me keep my phone out since she said it might be a while still. They had to administer ANOTHER Covid test since my surgery had been postponed 2 days. Did you know that they have a rapid result test? You get results in less than 45 minutes AND that test does not include the brain swabbing that the drive-thru test did?!?! Boy was I feeling a little upset that this option wasn’t given to me the 2 previous times I had to be tested! With another negative test result, I was ready to go. They started an IV, I scrolled through Facebook and played some games on my phone for what seemed like an awful long time. Summer would check in on me periodically, and several other people (anesthesiologists I think) were also coming and going and asking me lots of questions. At one point, I think Dr. Stephenson popped his head in because I made a mental note that it looked as if he had shaved (or at least trimmed) his quarantine beard. There was a lot of confusion about why I was just sitting there for so long, but it sounded like the operating room was behind schedule, and I didn’t get taken back until closer to 4pm though I’m not exactly sure on the time because before they took me back, the sweet nurse Summer took my phone and brought it back to Russ in the waiting room so he could text my support group and some friends that are not on facebook any updates.

Here’s where things start to get a little fuzzy for me. Probably because of the anesthesia, but also because Summer took my glasses to keep them safe with my overnight bag and clothing, and I feel blind without them because everyone and everything is very fuzzy. I had imagined being rolled into the operating room and sitting up and asking to pray with the surgical team, I had practiced what I would say in my head 100 times. I wanted them all to know my name and I was prepared to sing our family theme song so they would know the names of my 7 children as well. I wanted to get a good look at the robot that was about to save my life. And I really wanted to try to talk someone into taking a picture of the tumor when it came out. None of those things that I had imagined actually happened. I don’t remember seeing Dr. Stephenson at all. I remember being wheeled down the hallway and catching a glimpse of the outside when we passed some windows. When we got to the operating room, there was a fuzzy silver shaped box that could have been a refrigerator and I asked if that was the robot and they said yes…I was somewhat underwhelmed…but again, I’m blind without my glasses so I don’t really know what I was looking at. And I guess there was no reason for me to think it would be anything like my c-sections, but I don’t even remember getting moved from the rolling bed to an operating table, I don’t remember them doing anything with my IV or even feeling cold or hot (I’m guessing it was cold in there, but who knows!) The next thing that I remember is waking up and feeling like I needed to stretch because I had a charlie horse type pain in my hip/butt area of my left leg. I remember Russ was there…and when I say ‘there’, I don’t have any idea where ‘there’ was. Was this in my room where I would spend the next 9 days? Not sure. Was this a recovery room? I have no idea. I think I asked Russ what time it was and he said it was like 2:00am. That didn’t really seem to phase me at the time, but I did know that my surgery was supposed to take 3-4 hours. Though someone had said 6 (one of the nurses somewhere along the line) and I don’t think my anesthesia brain was really doing much math at the time. And with the long wait for the operating room and my inability to see a clock on the wall if there even was one, I didn’t even know what time my surgery actually started. Russ said it was like an 8 hour surgery. When I talked to the doctor later on, he told me it was 6 hours and 41 minutes. (Or something else very specific, he didn’t round up or down!) Regardless, all that I was registering at that moment was that my left leg was hurting. A lot. And I couldn’t stretch or make the feeling go away. And that feeling lasted for days.

I couldn’t figure out why my left leg was hurting so much, other than the obvious thing that my left leg is the one that had the knee surgery 6 weeks ago. This was NOT the same knee pain that I had been experiencing pre-kidney-surgery though. I knew they had operated on the right kidney (sorry cracking myself up here, I mean the correct kidney which also happens to be the one on the right) because there were at least 6 incisions on the right side of my belly and a drain coming out of my right side as well. But all my pain was definitely on the left. And it enveloped my whole left leg. They kept asking me what my pain was on that 1-10 scale. I gave it a 10. If I was feeling any sort of relief at all, I would say “maybe 9.5”. Who is “they”? – I am asking myself this question, not you, dear reader – I want to be able to tell you the name of every nurse and technician that I had. I was glad they wrote their names on the white board at the foot of my bed every shift change. But there ended up being so many, I’m sure I would forget someone if I made a list. The first couple days my daytime nurse was Megan, and she was also there the last couple days including my last day there. My favorite night time nurse was Coco, she was there the first 3 or 4 nights. Mecka was another night time nurse. Maritza was there a couple days. One night I had a male nurse named Larry, he was fun. It was more fun when the female nurses came back and we talked about Larry and blamed him for anything that was going wrong. But I have to say, it was the night that Larry was working that they brought me a new bed. It was supposed to be more comfortable with an air mattress. I did come to agree that it was the far superior bed, but that first night was not a good night for me, so poor Larry (unbeknownst to him) got a lot of blame for my discomfort.

Being in the hospital is weird. I’m no stranger to this, it certainly wasn’t my first rodeo, so to speak. After all, I gave birth to all 7 of my children in a hospital. I had many hospital stays during my last 3 pregnancies which each ended with a c-section. I like to think of myself as a good patient. I don’t abuse the call button. I think of it as an emergency-only button. Those nurses are coming in my room every couple of hours anyway to make me take pills, to take my vitals, to draw some blood, etc. etc. I do what they tell me, I am above all else, a rule follower. I wasn’t screaming in agony, but my pain was still a 10. I prayed a lot, I concentrated on my breathing. I mostly sat in my quiet room though. There was a TV and I flipped through the channels occasionally. I was trying to embrace the quiet though, because our house is rarely quiet. Being in the bed was painful. I would move to the chair in the room because sitting up felt a little bit better, but only for a little while. I needed help moving from the bed to the chair and back again. I had SO many wires connected to me, I almost felt like I was strapped into bed. I had an IV in my right hand near the wrist for the first several days. That IV was connected to the pole that held the bag of saline and had the most annoying beeps. It beeped when the bag was low, it beeped if the machine was unplugged from the wall for too long, it beeped in the middle of the night and even though I was pretty sure that the nurse’s station knows when it beeps…they won’t come fix it unless you hit that button and call the nurse. Eventually I studied the buttons on the monitor enough to find the one that said “silent” and I would hit that whenever I heard the beep. It was like a snooze button on an alarm clock though that lasted maybe a minute or two. Sometimes the nurses came in right away, sometimes they didn’t. Now I’m a patient person (a patient patient if you will, haha) but that beeping. Man was that annoying. ANYWAY…on my left side, there was another machine thing that I was connected to, this one was the heart monitor. There were several electrodes stuck to me with the little clippy things like plastic jumper cables. All the cords from the 6-10 of those things were connected to a giant plug that was then plugged into this monitor thing that was behind the bed to the left. When I did need to get out of bed, there was a portable thing that they would hook up to the giant plug. It was like a brick (larger, chunkier, and much heavier than cell phone size), and when I went for walks or sometimes just so it was easier to get into the chair with the portable thing, they would plug the electrodes into that. It beeped sometimes too when its battery was low. And some of the hospital gowns had a pocket for this thing sewn into them, some of them didn’t. Just like some of the hospital gowns had the snaps on the sleeves so you could easily get them on and off around all the wires/IVs and some of them didn’t. In addition to those 2 main tethers that kept me in the bed, I also had a drain coming out of my right side, and a Foley catheter. I had experience with the Foley in all of my previous hospital visits. Honestly, it’s kind of nice to not have to get out of bed to pee especially when they are constantly pumping you full of fluids. You don’t ever get the urge or even know when you are peeing, you just don’t have to worry or even think about it. As often as they had to empty that thing, I’m glad, because my mobility was severely limited. The bag at the end of the Foley was portable, but it was usually hooked on the side of the bed and kind of felt like another strap holding me down onto the hospital bed. The day after my surgery they briefly removed the Foley, and I honestly don’t remember how long it was out, but at some point that day they said oops we need to put this back in, and it stayed in until I left the hospital 9 days after surgery. The drain was a whole new experience for me. I had read about it in the little booklet they give you before surgery. It was concerning just to read about it. I was anxious about it, and a friend of mine had told me that after her kidney surgery she actually still had the drain in when she went home. That was kind of scary to me. The nurses called it the JP drain. I did ask what that stood for and it’s 2 names, like maybe that’s who invented it? I don’t remember the names. Jackson Something. Anyway…the JP drain literally was like a straw sticking out of a hole in the side of my body. The other end of the straw was inside my kidney, or maybe in the area surrounding my kidney. And like you may imagine, stuff comes out of the drain and fills up this squishy bulb thing that’s connected to the straw coming out of my side. They squeeze the bulb and then tighten the tube and as stuff drains the bulb fills up like a balloon until they dump it again. The fluid in the drain looked red, maybe not bright blood red, but definitely in the red family. This thing just kept filling up. So between the IV, the heart monitor, the catheter, and this drain…moving was kind of difficult.

I couldn’t reach anything beyond my arms length. The phone in the room would ring 3 times a day with a call from food services to ask for my order. I didn’t answer the phone for several days because I couldn’t get to it in time, so they just brought me whatever the default meal was. It really didn’t matter though, because I had no appetite for about the first 3-4 days after surgery. I would look at the food and maybe it smelled good and I wanted to eat to keep my strength up…but after a couple bites, I couldn’t look at it anymore. Even when they brought French Toast which is probably my favorite breakfast food. It was the Monday after my surgery (4 days post-op) when I messaged our family chat and told them that they had brought a scale in my room and made me stand on it. I was kind of thinking – ok I’ve been here a while, and I’m not eating…wonder how much weight I’ve lost?! I was almost excited to see what it would say. Until I saw what it said, and then I wanted to cry. It was a full 30 pounds MORE than what the scale said on the day of my surgery. THIRTY POUNDS. Without eating. This made NO sense to me. Still doesn’t. I asked the nurse how that was possible. She didn’t seem to know either. The general consensus was that it must be all the fluids. All those saline bags going through my IV. Still doesn’t sound quite right. But this made me feel a little better. When I think about 30 lbs. I think that’s 2 bowling balls. That’s heavy. No wonder I was having trouble moving around. They encouraged me to get up and walk around. That definitely involved some help from my nurse. It was an ordeal to get me unhooked from all the machines, and then I had to bring the IV pole with me. My leg pain was still very present, and I felt extremely unsteady on my own, so they brought me a walker that stayed in my room. I used it to go back and forth to the bathroom (because the catheter takes care of #1, but everybody poops.) And I used the walker when I did have a nurse there to help me walk down the hallway, she would have to drive the IV stand while my hands were steering the walker. The catheter bag was hanging from the walker and I imagined how I must look and made myself laugh. I really was wishing I could find some tennis balls to put on the walker legs. I think Russ and Nora both took pictures of me, I’ll have to see if I can get a picture from one of them to share here. Many times, I didn’t get very far before turning around. I was incredibly slow. And it usually felt better while I was moving because it was a change in position, but I was very weak.

My walking goal was to get to the end of the hallway where there were some paintings and pictures on the wall. It took a couple days before I got to see what they were up close. Pictures of many of the 14W nurses, and some cute little canvas paintings that they all had done as a group bonding activity. What’s 14W, you might be asking yourself? That was my hallway – 14th floor, west wing. I do not remember any elevator ride that took me from the 5th floor up to the 14th, so I guess I was still out. My room was 1422 and my window was facing west. Which means I didn’t have a nice view of the skyline, I was looking the opposite way, and I saw I-290, some billboards, other buildings…and it was probably halfway through my stay when I actually realized that I was on the top floor of the hospital. I honestly had no idea. When my appetite started returning, those 3 phone calls and meal deliveries a day became something to look forward to, a way to know that time was passing…it broke up some of the boredom. The meals were not consistently at the same time every day though. The kitchen was short-staffed and since we were the top floor, we were the last ones to get a meal. So sometimes, breakfast didn’t come until after 9:30am. That’s not super late, except when they start coming into your room at 5-6am and then you’re up, it seems pretty late. I often didn’t get lunch until 1:30-2pm and dinner was after 7. The food was typical hospital food. I told myself they made it that way on purpose because if it was really good, you might not be motivated to get well and go home. Once I acquired a menu and moved the room phone closer to my bed so I could answer it, I started choosing my own meals. The French Toast with some sausage links and a banana became my “usual” for breakfast. I tried several of their different offerings but by the end of the stay I was kind of tired of it all and just would order a cheeseburger and a bag of chips, or the chicken Cesar salad. One day I watched a couple hours of Guy Fieri’s Grocery Game on Food Network and then immediately decided that was not a good choice. Even the crazy things they made with weird ingredients were looking much better than whatever was appearing under the gray plate cover on my meal trays. So then I watched some HGTV and the before/after comparisons always amaze me, but that just made me want to go home and see what my next home improvement project was going to be. The days really were dragging by. I was getting desperate so while chatting with Gina, she talked me into downloading Netflix onto my ipad, and I was >>THIS<< close to starting to binge watch Parks and Rec which is her absolute favorite. I’ve seen a few episodes because Russ used to watch it in bed, but it never really was one of my favorites. We can dissect why another time, but I just wasn’t interested. But as I was setting up Netflix, it just so happened to let me know that a series that I enjoyed before had a new season. So instead of Parks and Rec, I binge watched season 2 of The Umbrella Academy. Had I known that I would be spending 9 days in the hospital, I feel like I would have planned ahead better. I would have brought some books or my Kindle to read. I would have brought my daily calendar with Sudoku puzzles. I would have made more of an effort to do something with my brain which was kind of fuzzy from all the pain meds. But I wasn’t prepared. I was trusting that my surgery was going to be successful in removing the tumor with the robot and I would be back home in 2 days and recovering there and taking it easy like I did after the hysterectomy last year. Piece of cake. So the longer that I stayed and there was no talk at all about me going home, the more I worried and wondered what exactly was going on.

Why was I in so much pain? Why was it my left side not the right? Did something go terribly wrong and they just aren’t telling me? How many days are they going to let me go without taking a shower? Is that me I’m smelling? Why is my hair so incredibly greasy? I was thankful that the only mirror was in the bathroom and it was a small mirror at that. I asked Russ to bring me my shampoo when he would visit and he kept forgetting. Nora brought it for me on day 8 of 9 and that was the first day I was able to shower since surgery. I had some sponge baths in between, but there’s just something about a real shower that made me feel better. The Covid-19 regulations for the hospital were not fun. I imagine they were even less fun previously. I was allowed a visitor each day, actually 2 but only one at a time. Nobody under 18 though. And we are still in the middle of a global pandemic, so I didn’t want to ask my parents to come visit me. Russ came to visit 3 times plus surgery day and pick-up day and Nora came to visit me once. I texted our family group chat, tried to keep mom and dad updated, and some friends that I know wouldn’t see any updates on Facebook. I don’t ever want to be too negative on social media, but I do try to be honest. And since I didn’t have many answers to my own questions, I didn’t post much there. I will forever be grateful for social media though because I know that by sharing my story, I was able to help the doctors figure out what was wrong with me more quickly thanks to the responses that I got from my family, especially Aunt Joanne and cousin Carol Olas. The Covid-19 restrictions don’t all make much sense. They won’t allow any deliveries to your room like flowers. I understand not wanting strange delivery people in the hospital…but it was kind of sad when I found out some friends had tried to send me flowers and I never received them. Russ knew about one such delivery from some out of town friends and he tried to contact the florist one of the days he was visiting. He went to the flower shop to pick up the bouquet and hand-deliver it to me. Well, they had thrown it away when their delivery person wasn’t allowed to enter the hospital. So Russ waited while they re-made the arrangement and then he tried to bring it to the hospital himself. And they sent him back to put it in his car, they wouldn’t even allow him in the hospital with the flowers. So I got a picture of some flowers once Russ got back home with them, but the thought was definitely appreciated. If anyone else tried to send me something, make sure you get your money back, because I didn’t get anything! I did receive many messages via text and Facebook from people who had been worried about me. I did not feel ALL alone, though I was pretty lonely. I envisioned myself making friends with other patients as I walked the halls, but I rarely saw anyone else other than the nurses.

That’s not exactly true, there were actually MANY people coming in and out of my room on a daily basis. Rush is a teaching hospital (just like on Grey’s Anatomy!) and a team of residents/interns/whatever you call them along with a doctor from several different teams would do their rounds, usually in the morning. The urology doctors were Dr. Stephenson’s team, they always would defer to him if I had any questions but he was never in the group doing the rounds. The nephrology doctors were not as big of a group, and I was a little confused about what the difference was. But nephrology is the study of the kidneys so they are the kidney experts while the urology guys do kidneys and vasectomies? I don’t even know. All the people who came in and out wore masks, as you would expect, but it really does make it hard to study someone’s face when you can only see their eyes and ears. I don’t remember any of the specific doctors names. Another team of doctors that came in were from oncology. I know that oncology means cancer doctor. Cancer is a scary word. The pathology lab still as of today (9/5) does not have the results back from my tumor. Dr. Stephenson is fairly certain that it was malignant though, that’s what all my paperwork says. Malignant neoplasm…a.k.a. kidney tumor. It said that before surgery even. Back to oncology, there was a female doctor, I believe she was a resident. She had dark curly hair and I recognized her because she was one of the ones who came more than one day in a row. She gave me some lab orders the day or 2 before I was released saying that when I follow-up with Dr. Stephenson that I should also stop by the lab to have blood drawn for her.

I’m going to pause here for a minute. I’ve been working on this blog post for 3 days now. Mostly in the middle of the night when I am unable to sleep because of the pain. As I re-read what I’ve written, I realize that I am skipping around a lot and not doing a very good job at a chronological recap of my surgery and hospital stay. I’m also well-aware that this is entirely too long, and I know my kids aren’t going to read it. But if you are reading this, I just wanted to apologize for how confused you might be. But since I’m also writing this for me and my own processing/healing, I’m just going to keep going so I can get it all out. I’m giving myself a whole lot of grace these days, I hope you will, too. I’m adding some screen shots of facebook posts and pictures as I go, to try to tell the whole story as best as I can.

Dr. Stephenson came to my room about 3pm on the Friday after my surgery. He reported to me that the surgery was a success and not only was he able to remove the whole tumor, but he was also able to preserve over 90% of my kidney! He even showed me a picture of the tumor. He had made a little picture collage with 3 of my scans and then the tumor itself next to a ruler. We tried to get the Air Drop feature on my iPhone to work, but my brain wasn’t firing on all cylinders and I couldn’t figure it out, so he texted it to me. I was very excited to share it with my kids and of course with Facebook. The consensus was that it looked a lot like a meatball! I don’t know why my surgery took so long. But I do know that the lengthy time that I was in surgery, my body was positioned in a way that caused me great pain. The official term that the doctor used was rhabdomyolysis here is what Google says about that:

Rhabdomyolysis is the breakdown of damaged skeletal muscle. Muscle breakdown causes the release of myoglobin into the bloodstream. Myoglobin is the protein that stores oxygen in your muscles. If you have too much myoglobin in your blood, it can cause kidney damage.

The non-official term that he used was “muscle injury” and his opinion was that the positioning during my surgery caused this muscle injury. The breakdown of the muscle added tissue to my bloodstream and that caused there to be even more work for my little kidneys to handle. This caused my kidney function numbers (creatinine) to start climbing instead of lowering, and that Friday night, my nurse Coco told me they were considering sending me to the ICU. They thought I might need temporary dialysis, and were thinking it might be a good idea to start a central line (port). I knew what that was, because Anna had a port when she was doing her chemo treatments. These little things were adding up and it’s been a bit of an undertaking to recognize and accept that I have cancer, too. My perpetual optimism is hoping/praying that since the surgery was so successful and they removed the whole tumor, perhaps I won’t have to go through any more treatments like poor Anna did with her leukemia. The rest of me is trying to just not think about it too much, today has enough problems, tomorrow’s can wait until tomorrow.

Another team of doctors that came through was from “Ortho.” According to Wikipedia, Orthopedics is the branch of surgery concerned with conditions involving the musculoskeletal system. One of the residents (named Tyler) from this team came back several times over a couple days when they were trying to diagnose what was causing my pain. His job was to find out if I had something called Compartment Syndrome. Where my pain was centralized was in the gluteal compartment (the middle of my left butt cheek) and according to Tyler, it was very uncommon. As in there were maybe 50 documented cases worldwide of gluteal compartment syndrome. I think he might have been excited that I could possibly have been case #51. But his final determination was that I did not have Compartment Syndrome. When he was explaining it to me, I think we were both wishing that it wasn’t that, because the “fix” for that is another much more invasive surgery called a fasciotomy which would be a large incision and then they would roll out your muscle tissue and put you back together. Recovery from that would probably be much more difficult than what I was already facing.

Somehow, some way, after several days of uncertainty, I started to feel better. What had been pain was subsiding and now was mostly just a numbness that I was feeling on the left side of my body. It wasn’t contained to just the leg anymore. My left hand (pinky and ring finger) were tingling, there was a patch of skin under my arm where I had woken up from surgery with a mysterious raw patch that blistered…that also felt numb. And of course the odd swelling of the butt and hip area. But my pain wasn’t a 10 anymore. Getting up and moving was getting easier. I made it down the hall to see the pictures on the wall. I still wasn’t completely able to wipe my own butt (and I am still not sure how that even happened, but talk about a humbling experience!) They moved the IV from my right wrist to my left arm. I started discovering bruises under both of my upper arms where I was getting shots twice a day to prevent blood clotting. My surgical incisions were healing nicely, so I started asking for those shots in the belly instead of my arms. There is now strange bruising on my belly, but I guess this is all to be expected. I looked to be about 7 months pregnant, my abdomen was very swollen. On the right side, the skin started to stretch some more leaving me with an extra love handle and some new stretch marks. The left side was still swollen and felt tight to the touch from the muscle injury. I feel very lopsided. It seemed as if nothing was really happening. The phlebotomist would come into my room twice a day to draw blood and we waited for the results to see how I was doing. The nurses would try to explain to me what each value meant. The kidney function was the most important one for us though, and as it started to gradually decrease, it was becoming apparent that I was indeed on the mend. Since my pain had seemed to subside, I started to ask about when I could go home, because surely I could handle a little numbness in my own bed just as easily as in the hospital bed.

On day 7 post-surgery, they came into my room in the morning and said they were ready to take out my JP drain. This was kind of surprising because that sucker filled up fast, still. And it would sometimes leak around the drain too, so I had a large dressing covering my right side the whole time I was in the hospital. After they took out the drain, I just started leaking out the hole in my side. Whenever I would change positions, I could expect to need a gown change, linen change, and another dressing change. Even a week later, I still have adhesive marks on my skin where they had taped up the dressings again and again. They kept saying it was ok and it would close up, but Nurse Megan and I agreed that they might have pulled that drain out a little too soon. Miraculously though, on the day I was planning to be released…that sucker closed right up and I didn’t leak at all. So, I guess the doctors were right. Or they got lucky. Or maybe I just wanted to go home really bad.

On day 9, they removed the catheter and I was able to pee on my own. That morning I walked down not just my hallway, but the 14S hallway too, where there was a beautiful view out the windows by a grand piano. And I did my walking without the walker! I was feeling human again after my long-awaited shower the day before, and even put in my contacts for the first time since before surgery. The waiting was excruciating. I had to pee at least 3 times and they had to scan my bladder to make sure I was emptying it completely. With all the fluids they had been pumping into me, this was not a problem. I think I ended up peeing 5 different times before the discharge orders came through, and a couple more times while waiting for the wheelchair escort. Russ came to get me and we stopped in Bolingbrook on the way home to visit with my mom & dad for their anniversary. The yard sign that I ordered a month ago was up and it was amazing. The gift box of messages from family and friends that I had been working on filling for 6 months was a big hit, too.

I’m going to end this blog post here. I feel like there’s another novel inside me to describe everything that’s been going on since I got home. I guess I will start on that one next. As I’m sitting here on 9/6 at 7am, I have been home for a week now. I’m glad to be here with my people. I missed these kids like crazy. The remote schooling is bizarre, but we are working through it. 2 pieces of my heart are away at college, but I’m really glad that both Jack and Nora are here at home. I know they would both rather be living in an apartment somewhere and doing their #adulting somewhere else, but having them here has been a comfort to me. My patio of my dreams that I’ve been imagining for several years is currently under construction & it looks amazing. If you took the time to read this whole thing, thanks. I feel blessed to have so many people care about me.

This is normally a very dangerous question to ask in this house. With 7 kids, a cat and a giant dog…well, sometimes you just don’t really want to know what that smell is. Of course other times, it’s something delicious being made in the kitchen. Or when anyone in the neighborhood gets the grill out. Or sometimes it’s one of those nature (but not gross) smells like what it smells like just before it rains, or fresh-cut grass, or the lilacs that used to grow outside the front windows in the farmhouse we lived in back in Ohio when the big kids were little. I read once that the sense of smell can be the most powerful thing to hold memories. I didn’t give it much thought at the time, but that came flooding back to me today when a smell that I came across brought me to tears.

It all started with a futile search for crayons. Thanks to the Coronavirus Pandemic, I’ve been thrust into the roll of home school teacher and can not find one box of crayons for these students of mine to use even though I buy extras EVERY YEAR when they are on sale at the beginning of the school year. Before the basement flooded last October, there was a whole container full of crayons in the basement. It had literally hundreds of crayons in it. There were probably multiple containers like this in my home over the years. Not all the crayons were sharp. Some were missing labels. Many were broken. At one time, I remember spending waaaaay too much time standing them all up in their container (which was the bottom of an old Pampered Chef Tool Turn-About that had been re-purposed several times, coincidentally.) I decided that I would (finally) look through all the boxes that got stashed here or there when we cleaned up from the flood. When I say we, I really mean my dear friend Dianna who answered a cry for help I sent out to the local mom Facebook group, she saved my life when she came and helped me clean out the basement. But I digress here, back to the search… I started in my bedroom which is where we had brought all my scrapbooking supplies, there were probably a dozen boxes up there. I spent 3 days going through them, and it’s wonderful because I actually now have a designated space and some semblance of organization and maybe I will get back to my favorite hobby one of these days. But the crayons were not in any of the boxes that had my crafting stuff in them. So today, I went down to the basement, because that big closet under the stairs surely had some stuff stashed there. So I had to pull out the Christmas tree, and a box of kitchen stuff from Nora’s apartment, and a giant Rubbermaid tub that’s full of trophies that I couldn’t make myself throw away even though I really wanted to. And then there were 5 or 6 mystery boxes. Dianna had labeled them but I peeked in them all anyway. And I’m kind of glad I did. Not because I found the stupid crayons…they were nowhere to be found, and at this point I’m going to assume we threw them away (mental note, go order some on Amazon before you forget again!) I came across an old knitting bag. It had belonged to my Grandma Dean and when she died, my mom gave it to CarmelLiam. First I pulled out a little floppy hat and put it on Maggie. Liam said he had made it. Then I pulled out a baby sweater that was unfinished. Liam said, “Oh yeah, I remember Great Grandma had started that for Ben when he was a baby. She had a little notebook in there too where she took notes every time she worked on it. I thought I would finish it, but I never did.” I held the tiny sweater up to my face and breathed in the smell of Grandma Dean’s house. And these tears just welled up in my eyes, I tried to explain it and see if Liam could smell it, too. It might just smell like a wool sweater to anyone else, I don’t know. But I put it in a Ziploc bag and am going to mail it to Gigi and see if she smells it, too. I’d love to bring it by my mom’s house, but thanks to the ‘rona, I can’t right now.

My Grandma Dean’s house was kind of quiet, which was VERY different from Grandma Gogliotti’s house. The carpet wasn’t very thick or shaggy like at our house. There weren’t many toys except for the giant Chinese Checkers board that hung on the wall in the addition above the mini organ(?) What the heck was that thing? It wasn’t like the keyboard my kids use, but it didn’t have any pipes like an organ at church either. Oh, there was another toy, the Harris Bank lion with the taped glasses that I’m sure we broke. He usually sat on the pull-out sofa that was yellowish and leather? Maybe pleather? I don’t know. We played games in there, Grandma taught me how to play Pinochle. We played 500 Rummy. Of course we played Chinese Checkers with the different colored ping-pong balls. And speaking of ping-pong, she had a pool table in the basement that could turn into a ping-pong table. And 2 old-fashioned school desks, the kind where the wooden desk was connected to the little wooden chair. And she had a stash of old paperwork from when she used to be the secretary at an elementary school and MAN there was just something satisfying about filling out a form in carbon copy that I have ALWAYS loved. We would play school long before we were school age. The old-fashioned typewriter she would let us play with occasionally was actually in her bedroom back upstairs. There was a closet under the basement stairs where they stored all of the old cigar boxes that Grandpa Dean went through. I think he must have smoked a lot. We made many craft projects with them over the years. There was only one bathroom, I think it was pink. She definitely had Ivory soap in there. The kitchen was small and had wooden cabinets. There was a light over the sink that you had to pull a chain to turn on. There was a rotary phone on the wall next to the sink. The extra bedroom was kind of fun, I think we called it Uncle Billy’s room, but I’m pretty sure if anyone slept there, it was Grandpa. (Uncle Billy slept on a little cot in the corner of the basement behind the pool table.) In the extra bedroom though, there was a table pushed against the wall where Grandma had her stamp collection. She had big albums of old stamps. She taught us how to soak a stamp off of an envelope and we started saving stamps for her if we thought she might need it for her collection. In the closet of that bedroom, there were stairs. I totally forgot about that until this week when Gina begged me to look in our attic and started me thinking about what a finished attic might look like. My Grandma Dean’s house had an attic. In my memory it was very big…but I think that’s because I was very small. Nothing about her house was very big, except the pine trees in her backyard. We would go under the boughs and find so many pine cones that became peanut butter-covered bird feeders or glitter-covered Christmas ornaments. We didn’t play up in the attic that I can remember, it was dusty and had lots of boxes, but I remember that some daylight came through a window and it was exciting to see what was at the top of the hidden staircase in the closet.

So we didn’t find the little notebook that Grandma had in her knitting bag that Liam described to me, but I know just what it probably looked like. It was one of those tiny pads of lined paper with the spiral binding along the top. She would flip it open and usually there was a rubber band that marked her place in the notepad. She had one that she used when she was trying to quit smoking…which seemed like my entire childhood. She would write down the time every time she smoked a cigarette. I think this was supposed to make her more aware of how much she was smoking. I think she just liked being organized and writing things down. She also tried hypnosis once, and acupuncture as well. I think eventually her emphysema is what made her finally quit. So her knitting notepad had notes in it about who she was knitting for and how many rows she completed each time she did some work on the sweater. I’m not a knitter myself, I have no idea how…though Liam has taught himself how and is currently teaching Maggie how to do it as well. I do remember Grandma Dean saying that sleeves were hard though, and that’s why most of the sweaters she made for Anna were vests. Liam remembers that this particular sweater she started making was for Gigi’s oldest, Ben. He thinks the pattern was in there too, but they aren’t there now. I just so happened to also find an old CD with photos from Wal-Mart. (Remember when you dropped your film off at Wal-Mart and a week later you got prints back and they would put them on a CD for you, too??) It was my Mom’s, her writing is on the back of the CD sleeve and it’s dated 10/14/05. There’s a picture of Grandma Dean with Ben. Crazy, right? Know what’s even crazier? Not a half hour after finding these things and having my teary moment in the basement with my kids…I came back upstairs and checked my Timehop… this is what I saw:

So when a bunch of crazy coincidental things happen all at once, it usually means God’s at work. Or there are angels around. Maybe Grandma was thinking about me, too. In any case, I was overwhelmed by the tears. I don’t cry very often. I’ve conditioned myself to avoid tears at all cost because in my brain they signify weakness or being too soft, and I just don’t have time for that in my life. (Character defect? Who me?) So on this, the 9th anniversary of my Grandma’s death, I’m reminded of the good times and the memories that I don’t want to forget like the smell of her house or the little details that I hadn’t thought about for many years. If she was still alive today, she would be 98 years old. And if she lived as long as Russ’s Mama Faye, she’d still have another 11 years with us. That wasn’t meant to be though. Rest in peace, Grandmo.

OK I’ve been wanting to write about this for a while, but it’s been really tough to get started. I have so many mixed feelings and have been processing my own thoughts and feelings about this for a few months now. Some people have asked, and many more probably didn’t know how to ask, and I totally understand. My daughter Carmella has been dressing more masculine and recently has asked us to start calling her Liam and using male pronouns. She is a transgender man. I probably said that wrong. He. It’s confusing. I’ll most likely mess up again. And even though with so many kids, they are used to us calling them by the wrong name on a regular basis…it just seems different now. Liam has been very patient and understanding, and when it’s all said and done, they are one and the same and a name is just a name.

Story time. Waaaaaay back in 1996, when we were pregnant the first time, we found out the gender as soon as we were able to. We had discussed names, of course, and both liked the idea of family names being reused, naming our children after someone we loved in our family was the plan. And Russ, being a junior, really wanted a son to be named after him…and I said “Nah.” (Just kidding!) He was very insistent though. So much so, that he offered all future naming rights if he could name our first baby Jackie Frank Russell, III. So we did, and I got to name the rest of them! He is lucky though, as are our children, because a younger me wanted children named Molly and Nigel. Instead though, I stuck with the original plan to use family names. Nora Constance was named after Russ’s Granny (Nora) and my Grandma Gogliotti (Constance). Both names I loved. Carmella Faye was named after my Great-Grandma Gogliotti and Russ’s Mama Faye. Gina Denise was a little bit of a stretch, but my sisters GIgi and anNA were used for her first name, and Russ’s sister Denise for her middle. We didn’t run out of family names, we both have pretty big families, but by the time the little ones came around, I was ready for a new naming convention. Since all the girls already ended in A, that was my criteria for the girls, Magnolia (the Mississippi state flower) was an instant winner though we both also kind of liked Agnes. Maggie’s middle name is Kathleen after my mother. Amelia has no ties to family and isn’t a state flower, but we both liked it, and her middle name is Michelle. I was ready to name #7 Georgia and definitely thought we could only make girls since it had been 19 years since Jack was born…but we got Clayton Michael instead, named after Russ’s Uncle Clayton and my dad. About a year ago, I remember having a conversation with Carmella and she asked what other names we had picked out for Nora if she had been a boy. William Bradford was the name, and I told her that would have been her or Gina’s name too if they had been boys. William was my Grandpa Dean and Uncle Billy’s name, and Russ’s Papa Brad was married to Granny. I’m not sure if that conversation was before or after or if maybe it was just coincidence, but for a year or so, when away at college, Carmella’s friends have been calling her Liam which is an Irish nickname for William.

When did I notice a change? It was innocent enough. She shared a fitting room picture on her Snapchat one day and I asked her what happened to her boobs? She looked pretty flat. She laughed and said, oh I’ve been wearing a compression garment. I thought it was just a super duper sports bra. But I told her that I was a little sad, because it made me think that she was unhappy in her body. I also told her that God doesn’t make mistakes. She got mad at me and blocked me on her social media for a little while. We talked it out though, and it was a short-lived estrangement, thankfully. Some time later, she shared some concert pictures and instead of the long black dress that most of the girls wore, she wore a black suit instead. She also cut her hair short which wasn’t anything really new, she has changed her hair often and had it super short before and always looked amazing. When she had her overnight hospital stay last October, she told me more, but was still in the exploration stage and we got her set up with a therapist and at that time I still didn’t know she was already going by Liam.

I was conflicted. It made me a little nervous. This is my child though. And I love my child as much as (or maybe even more than) any mother has ever loved her child. I tried to think back to any time where I might have noticed any red flags or signs in her childhood, but I come up empty. My sweet little girl was a peacemaker. She was the little clown and always made everybody laugh. She sang like an angel from a very young age. Blue was always her favorite color but I didn’t think that was masculine, I also love the color blue. She grew up loving to be crafty with me, she taught herself to knit and crochet and even started a yarn club when she got to college. She wore skirts and dresses all through high school. She sometimes questioned why Nora and Gina got bigger boobs, and I assured her that her boobs were just the right size, just as I had always told them growing up that they were all just the size that God made them and that was perfect. She was supremely confident in her appearance and I was in awe of her eagerness to embrace her body as is and tuck in her shirts even though she didn’t have a runway model body. Carmella and Gina were my little feminists and even made t-shirts saying so for all of their friends in high school. I thought that I must have done something right as one of my main goals as a mom was to make sure my daughters never struggled with self-esteem like I did when I was their age. Funny thing about pride…we want to take credit for the great things we see in our children and blame somebody else for any bad habits they may have inherited. The gene lottery doesn’t work that way, I guess.

When I was in AZ with Nora for our trip early this month, Carmella sent a group text to our family chat and told us she wanted us to start calling her Liam. What had just been a thought and maybe even a fear, and something that I was hoping would turn out to be a phase that she grew out of (like those awful comb-overs the girls all had in middle school) now seemed to be something a little more real. She shared her thoughts with us in a coming out letter that I’m sure took her some time to put together. She told us all how happy she was living the way that she has been and expressed some insight into her childhood memories. This wasn’t an overnight process, though it seems to have taken me by surprise. When we got home, I was able to have a long conversation with Carmella and I laid out all my fears and concerns. I worry about her safety in a sometimes unfriendly world. I worry that her very supportive friends in college won’t all be there when she graduates and moves on to the next chapter of her life. I grieve the dreams that I had for her, like watching her become a mother and nurture my grandchildren that God will undoubtedly bless her with one day. I worry that her childhood traumas revolving around our 5-year separation and divorce and subsequent reconciliation left her with unhealthy ideas of what a normal life actually is. Was she mad at all men because of her dad? Was she mad at all women because of me? What lingering hurts are buried inside her that have caused this to happen to my sweet innocent child? When she said she visited a gender therapist, that scared me, too. While I appreciate that she is seeking professional help throughout this transition…I still worry. I asked her to make sure she’s digging deep with her therapist. I believe she is. I believe she won’t do anything without careful consideration. While I don’t understand it all and probably never will, there’s one thing that will never change and that is my love for my child. A verse from Matthew 3:17 keeps coming to my head, “This is my beloved son, with whom I am well pleased.”

As I continue to process this change and try to honor Liam’s wishes, I am constantly tripping over my own tongue. Carmelliam is a common attempt we are laughing at for now. The pronouns throw me off completely. I’m giving myself some grace and trying to re-learn someone who I have known as a girl for her entire life and this is going to take time. I want to share a little excerpt from his coming out letter that I think answers all my concerns. “God did not make a mistake– this is an experience he knew I needed to go through to grow into a happier and healthier version of myself. And I am very happy.” And with that, because I will always be a scrapbooker at heart and who doesn’t love a good before and after photo…please say hello to my beloved son Liam, with whom I am well pleased.