Cancer

Sarcoma, Pt 3.

Cancer

*TW – graphic photos from the operation room

After my first surgery I thought that I’d have the wound VAC on for 2-3 weeks, minimum. My appointment to meet with my plastic surgeon was nine days post-op because it was clear after the first VAC change that my tissue wasn’t going to grow back on it’s own. That’s the thing about radiation; it doesn’t discriminate. Just because I’m young and otherwise healthy didn’t mean I got to escape the full force of radiation. My tissue was (and is) so damaged. Too damaged to consider any other alternative.

My plastic surgeon came highly recommended, with a last name that no one could pronounce. My oncologist told me everyone loved him and my nurse raved about him. I wasn’t sure what I expected but I suppose a counterpart to my older, very experienced surgical oncologist? Instead when the plastics team walked in I was surprised to note that they were all fairly young – and the Ativan I had taken prior to this third VAC change loosened my lips enough to ask if I should let them operate on me (OOPS. Remind me that anxiety meds are not my friend). They assured me they were (and to further comfort myself I did some background checks and yes my doctor was very qualified).

Dr. Sammy told me that I had a few options. First: I could get a tummy tuck. The location where the sarcoma had made its home was soft-tissue, not muscle, so taking soft tissue and replacing it would be the most aesthetically pleasing solution. However, the surgery itself would be long (~6 hours) and he would basically have to clear a whole day to do it. He said it would probably be another 3 weeks before we could do it, and worse, he said, was recovery. While I’d get the benefit of a tummy tuck after three kids, I’d also have to deal with the recovery which would be difficult and extra painful in an area that would otherwise be untouched.

My other option, he said, wasn’t so pretty. They’d make a long incision in the back of my calf, pull out one muscle, and fill the hole with the muscle. Calf muscle doesn’t belong in the front of your tibia, but it would do the job. It would be a lot less aesthetically pleasing, but recovery would be significantly easier. Either way they would take skin from my thigh or butt and cover the new area. The other thing? He would put me on his schedule the NEXT DAY.

The decision was basically made for me. The only reason to take the first option was for the sake of vanity. And yes, of course it was tempting…but knowing that I could get this gaping hole in my leg filled and the wound VAC off, and to get back home to my kids before the end of September, was so worth it.

I packed a bag, expected to be there for a few days. They said I’d probably say from Friday – Sunday or Monday. My mother-in-law was already staying with us so we didn’t have to worry about the kids. I tried to force my brain to get into fight mode, knowing that my first surgery was harder than expected and not knowing what the second would really be like.

I got to scrub down with that terrible surgical soap again, this time having an allergic reaction (because why not, right?). We were back at the hospital at 9 AM the next day.

This time around my surgery prep team was very on top of things. There was a huge flurry of activity, different people coming in and out, overloading me with information. This time I saw an actual anesthesia team – who informed me that I didn’t need to dump any of my milk (contrary to what the resident of my previous team had told me). They explained that they were going to put a catheter in my leg and it would administer local anesthesia to my leg to keep it numbed in addition to the general anesthesia I’d receive before going into surgery. They said they’d keep this pain blocker in after my surgery to help keep the pain under control. Apparently even after three babies I have great anatomy and the head anesthesiologist took the opportunity to draw some explanations out on one side of my pelvis for his resident. I took it as a compliment.

My plastic surgeon came in with an ultrasound machine to draw all over my calf to plan where he would take the muscle from. He told me that drawing it out he’d be able to minimize the incision to remove the muscle – I’d have a 6 inch incision instead of the usual 12 inch one. Then we figured out where we’d take the donor skin from: my right butt cheek, as close to my hip as possible. And then we were ready. It was a short surgery, they said. 2 hours max. I gave my stuff to the nurse to keep just in case someone forgot to call my husband. And waved goodbye for the second time in two weeks.

Once again they wheeled me away to the surgery room. For whatever reason I can’t remember it as clearly as I can remember the surgical room for the first surgery. I think it was a shorter ride over. The same process – moving to the surgical table, an oxygen mask and then blackout.

Waking up was as hard as it was the first time. I was super disoriented, I remember feeling super parched and exhausted. I told my nurse in my delirium that she was pretty. (She was, I stand by that). It took me an hour or so to do well enough for them to let Lucas see me. Once again, he came in looking more tired than I was. It had been another surgery that took two hours longer than anticipated. I went in at noon and when I saw Lucas it was already after six pm.

But, Lucas told me, had I seen Dr. Sammy? I hadn’t. And so Lucas told me that my surgeon had attempted something new. That I hadn’t been told about. He attempted – and succeeded – to move the muscle from the back of my calf to the front without making an incision. He had spared me additional suffering and an additional scar. That’s why my surgery took longer. Here are the pictures from my surgery that Dr. Sammy sent me, a week later.

Coming out of this surgery was hard. I woke up to another wound VAC on my leg, and a brace. I thought that my last hospital stay was hard; little did I know what was coming.

I should have known that the night would go wrong from the get go. It took them an hour to find my belongings, which should have been taking to a locker but that were somehow misplaced. Once they found my things, Lucas was too tired to stay with me – so I gave him my blessing to take Blaise and go home. Almost as soon as he left my nurses decided to take me to my room. My mother in law and left me some balloons that were a nice gesture but more trouble than they were worth and they made a few jokes about the balloons getting in the way. We got into the elevator and one of my tubes got stuck in the door. We were trapped, for a solid 30 minutes.

I took this in the elevator that we were stuck in. She is pretty, right? I cracked some jokes about how they should be glad that I wasn’t a smelly old man; they agreed. I’ve always been one for gallows humor, particularly during this time that I’ve had cancer. I remember them blaming the balloons.

We did eventually get out, thanks to the nurses on the other side who were able to cut the cord that had gotten stuck in there. We made it out and into my room which was a solo room (THANK GOD. It’s already bad enough to use a bedpan, but using it with another person on the other side of the room? Nah. No thanks.)

I was greeted by a very sweet older nurse named Bill who will forever be my favorite nurse because he made me a peanut butter and jelly sandwich when I hadn’t eaten anything in close to 24 hours; he tried to help me get comfortable and settle in for the night. Little did I know what would happen as the night went on…

Somehow, someone made a mistake. Well, multiple mistakes were made. The first one was that the catheter in my leg was disconnected after surgery; while the catheter itself remained in my leg, the actual drip itself was disconnected. I am not sure who decided that, but it happened before I moved out of post-op. The second mistake was that we took the heart monitors off. That would usually not be a big deal, but the hospital apparently only had a limited number and in order for me to be connected to the pain blocker I had to have the heart monitors on. So without those, I couldn’t be reconnected.

My pain progressively got worse as the pain blocker wore off; I had taken a dose of oxycodone when I first got to my room. Around midnight, Bill had left and another nurse was with me for the night, and my pain was becoming unbearable. She attempted to get a hold of the anesthesiologist on call to reconnect the pain blocker. She tried every 30 minutes to no avail. My IV was starting to hurt, so I got a new one placed. I learned to ask for the IV with the blue cap because that’s the one they use for children and apparently I have tiny veins. Another hour passed. Another. It was three AM and she wanted to give me another oxycodone…except it had been taken off of my chart. The one drug that I had been on since my first surgery had been removed from my chart in the middle of the night, hours after a second intense surgery. I was left to cope with Tylenol for the longest vigil of pain I had ever experienced in my life.

In those late hours of the night I recorded some Instagram stories. I messaged whoever was awake. I remember texting and the pain I was in was so bad that I would black out halfway through typing so the sentence would start out normal and would end like thisshwuejdnwh….

Somehow I made it through the night. I didn’t sleep. We could not get a hold of anyone. I did not get an answer from anesthesia or the plastic surgery team until nearly 9 AM the next day.

It was a mistake, they said. The tall, blonde plastic surgeon with a high ponytail and the hipster, less attractive plastic surgeon with the round glasses. They said they didn’t know how it happened. The anesthesiologists apologized too as I sobbed and asked how the actual fuck everything had been removed from my chart and that there were no heart monitors to put on me to reconnect the pain blocker. I had spent the night feeling like someone had taken my leg muscle and was twisting it like a loaf of Babka and then stabbing me with a knife. My donor site, which I was forced to sit on since they ended up flaying the skin from the middle of my butt cheek, was barely a nuisance compared to the severe anguish I felt from my leg. They told me that usually people can’t handle the pain from the donor site, so that gave everyone some perspective. The fact is that radiated tissue is severely damaged and sensitive; and I had just had my bone scraped not even two weeks prior. Of course that pain was tremendously worse than a sheet of skin that had been removed like roast beef from my ass.

They put the pain blocker back in and put oxycodone back on my chart. I could take up to 15mg per dose, every 4 hours…which is what my previous team had told me I could take in 12 hours if I wanted to nurse. Apparently not everyone is informed when it comes to pumping and that dumping is really a thing of the past. I managed with 10mg for the most part, every 4 hours, with the pain blocker.

When I saw my surgeon later that day he was furious. FURIOUS. I mean, he was angry enough that he repeated multiple times that he submitted an incident report. What had happened to me, he said, was not acceptable. Someone would reap the consequences of their actions – but really, I’m the one who reaped them. He apologized so many times. He wrote his cell phone number on my board for me in case anything happened – and as a warning to everyone else that he was watching.

Dr. Sammy also gave me a new healing and pain regimen. A long list of vitamins (a prenatal, vitamin c, calcium + magnesium), some eastern medicine and this powder called Juven to dump in a drink and chug. He said I needed to be on a high protein diet. Whatever it took to get me to a place where I could start healing.

He also explained a little about why he did what he did in the operation room. He wanted to practice on a corpse first but he didn’t have any time. And really, what he did on me he wouldn’t do on an older patient. But it could change the lives of young sarcoma patients. Sarcoma is only 1% of all cancer. There’s not a lot of funding that goes into it, and not a lot of experimenting. Usually, Sarcoma has two peaks: children under 15, and adults over 60. To get someone in their late 20s is extremely uncommon. But that made me the perfect person to try this out on. The success of this surgery, he said, would change the lives of children with sarcoma. They wouldn’t need to get an incision the length of their arm or leg to move muscle around. They could do it with some cameras and pull it over and know that it would work. This is something that I am still blown away by, a month later.

The rest of my stay was hard. My pain was bad, very frequently. I missed my kids. I hated using a bedpan or the portable toilet that they’d place next to my bed. I forced myself to keep pumping for Blaise. I struggled to sleep because even when the pain subsided, the narcotics gave me nightmares.

I realized then, those first few days out of the six I was in the hospital, that I would not be walking out of there like I had thought I would. The pain was no where near leaving. My kids were not going to have their mom back just yet.

This was the hardest thing I’ve ever done. Emotionally. Physically. I was alone so much, alone with my pain and my thoughts and wondering why, why had God allowed this in my life? To baptize me through fire? Because I’m sorry, but the whole “God never gives you more than you can handle” thing is not true. God gives you more than you can handle so that you lean on him and not yourself. And I can tell you honestly that I had a lot of conversation with God during my time in the hospital, although a lot of it involved swearing…

The sixth day came. At 6 AM they came and took the wound VAC off. They told me they’d work on my discharge papers and my meds. And I was officially free, not “cancer free” because they don’t use that terminology if you’re like me and have a 20% chance of recurrence. But free to go home and free of any more surgeries, for the time being…

I got home and laid down with my kids. And thanked God for letting me be there with them. I hoped then that I would be walking in a week. Well, that wasn’t the case. But I made it. I freaking made it home.

Sarcoma, Pt 2

Cancer

trigger warning: cancer, surgery + graphic images ahead, not for the faint of stomach ⚠️

I have known for a while that it is necessary to write this post, not for you – my readers – but for me to process the significant trauma that my mind and body has gone through. The past month and change has been a grueling marathon of pain and I don’t think that I can properly transmit my descent into the fire, ie, my surgeries and their aftermaths. This verbiage may seem dramatic but the only possible way for me to recall and transmit this is by narrating this as if it was not my own story. I was not prepared for the extreme suffering that my body went through and I don’t think I have properly processed it yet – but I don’t want to forget it, either.

My first surgery was scheduled for September 10th. My understanding was that it would be a quick surgery, that I’d be in and out in two hours. My mom drove up to help me and I told her I’d need her for that one night that I’d be in the hospital because my oncologist told me I’d be there for one night and go back with a wound VAC on my leg but otherwise I’d be fine. I had the pleasure of scrubbing down with surgical soap the night before and morning of that was itchy and left my skin feeling raw. I packed an overnight bag with very little besides my breast pump, some granola bars and a toothbrush – mom essentials, right – and went in that day thinking positive thoughts. We actually arrived an hour later than our “arrival” time because of Boston traffic and I should have seen that as some foreshadowing that this whole ordeal would be a much longer process than I expected.

I went in ready for surgery and they handed me an outfit I hadn’t worn in seven months – a Johnny and those mesh undies you get when you’re at the hospital for L&D. I sent this picture to my friend Elysa who was waiting for her second baby to arrive and jokingly asked if we’d be matching that day.

They brought me into triage and said it would be quick and my oncologist assured me that he would call my husband as soon as surgery was done. I handed my wedding ring over to Lucas and said I’d see them on the other side. The team wheeled me into surgery, my oncologist chatting nonchalantly to me about this art exhibit he had seen at RISD that had a significant amount of modern female artists. Somewhere he had read (pretty sure, notes from my social worker) that I painted and thought it would help me get my mind off of what was about to happen. They moved me to the surgical table, put an oxygen mask on and piled a few blankets on me. The room was cold enough that no bacteria could possibly survive, I joked to the team. They warned me they were about to put me under, and the last thing I heard and saw was my oncologist telling me to think of a painting. Lee Krasner’s Gaea was the last image in my head.

As I sit here writing this I‘m having a hard time remembering how or where I woke up. I don’t react well to general anesthesia and it knocks me out for longer than it should. I remember a few things: trying to look at the clock, the nurse bringing me some crackers and water, wondering where Lucas was. I remember not being able to move my leg and that there was a huge machine connected to it. I remember laying there looking at the people across from me who had also gotten out of surgery. Everyone looked like they were half in the grave.

When the nurse finally brought my husband to me he looked as bad as the other surgical patients, his face lined with worry. Apparently no one had called him to tell him that my surgery had gone as expected or that I was ok. I was brought up to a shared room with a woman who looked (and acted) like the witch from Snow White.

Looking back, my memory regarding this first surgery is barely a whisper, like my brain couldn’t process what had happened and decided to let it fade like a bad dream. That first stay was a day longer than I had planned and I learned very quickly that I was not going to resume normal life right away. I was in constant pain and the resident on my oncologist’s team was calling the shots re: my painkillers. She had me on half the normal dose of OxyContin and said that since I was breastfeeding I couldn’t exceed 30mg a day without having to dump my milk (this was not true). It was not nearly enough considering that I had a huge hole in my leg and a wound VAC inside the space where the tumor used to be. I found out the next day when Lucas demanded to finally talk to my doctor that they had removed the tumor but that they had had to scrape my bone in the process which would mean more pain and delayed healing. The pain from that, he said, could potentially be chronic.

My first hospital stay is a foggy rotation of sleeplessness and pain and annoyance, of asking if there was anything I could take and forcing myself to move my bed and pump at 2 AM to keep my supply going. My struggle to sleep was heightened by my roommate who got up to go to the bathroom on my side of the room every 45 minutes and was constantly, constantly complaining about her situation. More than once as she passed through my side of the room she made comments about the fact that I was allowed to eat (by the way, I puked every day that I was there). The fact that I had just gotten a huge chunk of my leg removed was clearly no big deal to her. She was probably as terrible as the nurses who kept refusing me proper pain medication and almost as bad as the nausea.

I lived for the moments Lucas would come to spend time with me and for the time I would get to see my happy, sweet 7 month old who was clueless about the pain his mother was in. I lived in anticipation of going home to my kids. They were the light at the end of the tunnel.

They kept me there an extra day so that they could change my wound VAC. They told me that it would be painful but did not prepare me for how bad it would be. They gave me an extra shot of something and some Ativan; the Ativan made my head foggy and my lips loose. Apparently I asked if my neighbor had left while she was still in the room because I really didn’t need her listening to what was about to happen…

There are no words for the pain I felt during that first VAC change. If you’ve watched a war movie and seen a man get his leg blown off? That’s really the closest I can get to describing the mind-numbing, searing fire of pure agony. The way that the VAC works is that it puts negative pressure on the wound while removing excess fluid from the wound. Because I had a hole in my leg, the sponge of the VAC was placed inside the hole rather than on top of a surface. To change the sponge, you have to turn off the machine which first removes all the pressure on the wound which caused a first wave of pain. I gritted my teeth and squeezed Lucas’ hand as hard as I could. Peeling the tape off caused full body shakes and I could not fight the tears from pouring down my face. But as soon as they touched the sponge my whole world was pain, it felt like someone was stabbing me with a huge burning knife. I screamed.

I would rather push out another 15 babies than experience that again.

Lucas has a stomach of steel and took this picture during that first VAC change.

I went home thinking I’d be able to hobble around on my own (false) and that it would be less painful as time passed (also false). I had two VAC changes before my second surgery, both of which were awful…

At my follow up appointment my oncologist told me what I had expected, but had hoped would not be the case: the radiation had damaged my tissue too much and no new tissue was growing. I’d have to have plastic surgery. He told me it would be 2-4 weeks that I’d have the wound VAC because my plastic surgeon would need time to schedule me in…

I had an appointment to meet with the plastic surgeon on September 19th. And man, I did not expect what was coming then…

(To Be Continued).

Sarcoma, Pt I

Cancer

As I write this, I am well into week 4 of radiation. I have seven sessions left, which seems like nothing. The end is in sight!

It has been a roller coaster of emotions. Exhaustion. Gratitude. Frustration. Sadness. Loneliness. And sometimes – on a good day – acceptance and peace and hope.

When I was diagnosed with sarcoma my surgical oncologist told me that this type of cancer is very rare, very aggressive and very resistant to treatment. I can honestly say that I believe that my tumor has shrunk during this time of radiation and I truly believe that it has been so effected because of the myriad of prayers that has been continuously poured out for me across the globe. It has been a tremendous thing for me to witness – literally thousands of people praying for me, most of whom I have never met in person. It’s when I reflect on this that I am overwhelmed with gratitude and hope.

The whole point of radiation is to kill the cancer in the tumor as much as possible so that the surgery is easier and there’s a higher possibility of getting all the cancer out at once. If it shrinks, that’s a huge positive that no one was expecting. Of course some part of me is hoping for a miracle despite the improbability. A tiny voice has told me on more than one occasion that so many people are praying, maybe it’s possible…

But that, really, isn’t the point of prayer. I’m praying for acceptance of my situation whatever it may be. I went into this knowing a few facts that were hard to accept. That after surgery I won’t be considered “cancer free” by my oncology team until I’m 10 years out. My chance of sarcoma appearing somewhere else is 20% – and that’s a high number for me to think about. The fact that the cancer was still localized after having first noticed this lump two years ago is very unusual, and that the sarcoma itself is high-grade (aka, more aggressive) gives me hope that maybe once I’m past surgery it won’t reappear.

Last week – week three – was hard for me. Honestly: I struggle to show weakness to others. I talked a little bit about this in one of my posts last week, but I’ll explain better here.

Without going into details, last week two different things happened with other radiation patients that made me feel the injustice of my situation. Everyone – everyone – is at least 30 years older than me, probably closer to 40+ if I’m being honest. Everyone comes with their spouse and their grown up children and I imagine that they don’t have jobs and can go home and rest or do whatever they want after radiation is over. And here I am, with my little nursling who just this week turned 5 months old, my stroller, my diaper bag, my phone volume on high in case my sitter calls me about the two tornados – ahem, toddlers – at home. I have been told by all of the faculty (doctors, nurses, social worker) that I need to take time for myself but I feel guilty because I have a husband who works his butt off for us and three very little children who need me. Sickness is part of old age and part of the process of walking towards death. As I put it bluntly in my frustrated vent to my husband – old people are supposed to get sick. I am 27 years old. Not even 30. Not even close to “halfway” through my life, and I’m in the same situation as them except my situation is harder because I’m not in a place where I can spend all day doing what I want to do.

This attitude rocked me last week and made my life a lot harder. I’m sure that getting angry is part of this whole process, but in that moment I was like – this is not fair, I don’t understand why this is happening. I let other people who are also suffering get under my skin with their comments instead of letting go and letting God. I don’t understand the plan of God but I do believe there IS a plan.

Week four has been very exhausting. My whole body is tired. My radiation site is red and puffy and irritated because we are killing that dang thing and killing some healthy cells in the process. I am nervous about what the next few weeks will bring. Once I’m done with radiation we will redo my scans (MRI, CT), see what progress has been made and make a game plan for surgery at the beginning of September. If all goes well, then the best case scenario is that I’ll go in for scans every 3 months for the next 3 years and then twice a year until I hit the 10 year mark.

Pray for me, that I don’t let the little things get me down and that I remember all of the good things that have happened to me in my life, and in this time! I’m almost at the end of the first stage of this journey.

I’d love to answer questions in another post – so feel free to send me any you may have!

cancer.

Cancer

A little over a month ago I went to a general surgeon to take care of what I thought was a lipoma in my leg.

I’ve had it for two years and in that time it has grown from a tiny barely there lump to several inch oval. In the fall I started to get concerned about it because it became dark and I knew it was noticeably larger and uncomfortable if I put any pressure on it, but my dad has lipomas and multiple doctors told me that they were genetic. When I finally saw the surgeon in April she made me get an ultrasound and an MRI and told me that it was a tumor.

She referred me to a surgical oncologist who had a busy schedule so I waited four weeks for my appointment. When I saw him, he told me he’d be shocked if it was cancerous. I had the biopsy last Wednesday and this morning I got the call….

Cancer.

It’s cancer.

The first words out of his mouth were “I’m so sorry…I’m genuinely shocked that this is a lot more serious than I thought.”

The lump that has innocuously grown slowly over the past two years is a sarcoma.

Right now, this is our course of action: check to make sure that the cancer hasn’t spread to my blood, and then do radiation 5 days a week for five weeks straight. Then surgery.

When I received this news this morning I didn’t know how to respond or what to think, and I still don’t…my normal response is to joke when I’m put in a serious situation 🙈 but I’m asking for your prayers to help me to stay positive and strong 💪🏼 and that this cancer is located in the tumor only.

I have already received so much support and so many prayers since I made this public. Thank you so much, from the depths of my heart, for all of it. I will be making some phone calls tomorrow to get a second opinion about treatment options.