I’ve been quiet lately. Hardly posting on Facebook or Instagram. Some of you have noticed. Others haven’t. But for you who have asked what’s been going on and haven’t received an answer and for you who have gotten only half the story, this post is for you. I apologize ahead of time. This will be a lengthy post (and at times a little graphic).
Where do I start?
It’s been a few months with some weeks being more brutal than the others. Many things have happened since the wedding in early February. Things I didn’t have the energy to deal with before the wedding. Things that I have had no choice but to deal with now that the wedding is over. So sit back and I’ll fill you in. I need to do this according to calendar date as it all gets confusing and convoluted for me because seriously… it’s A LOT of shit.
November 21, 2013: I had my normal “maintenance CT scan” with blood test. This would be the one that would lead me to the “Year 3” mark and if all went well would get me to the anticipated One CT a Year portion of my cancer “treatment”.
November 25, 2013: At the clinic follow up with my oncologist, I was told that the CT scan showed a new lesion on my liver. Because it had not been seen on any previous scans they were unsure as to what it could be and wanted to test further. Was it another hemangioma, a “change in blood flow” which could be nothing, or metastasis of my original neuroendocrine tumor (NET) in my pancreas? No one knew. So I was scheduled for an ultrasound to see if they could get a closer look. I was also given the usual “poke and prod” to see if everything was alright. As some of you may know, I had a couple of fibroids that prevented me from giving birth to Autumn naturally. Upon my physical inspection at this visit, I was told that they felt “so much larger” than before and also that they looked like they had grown a lot since the last CT. I was referred to an OB/Gyn in the same USC Keck family of doctors to check out the fibroids (which was most likely the reason for my insane periods – extreme heavy bleeding, painful cramps that were so much different than the ones I had in my youth, and extreme lethargy most likely due from the extremely heavy bleeding). So I scheduled an appointment with the new OB/Gyn to “take care” of the fibroid situation.
Yeah. Happy Freakin’ Thanksgiving.
December 6, 2013: Two days after my birthday (when I got to see Butch Walker in a small intimate thing with Dahlia and my now friend Billy, and the day before I got to see Redd Kross at the El Rey the day before my bday – yay!) I went back to USC Norris Cancer Center to have the Ultrasound on my upper abdomen to look at the liver lesion. The tech was surprised that there wasn’t an order for an ultrasound with contrast as he felt that would be a more detailed scan of the area. They scanned anyway and the first tech had problems finding it because it was very small. She called the attending radiologist and he did my scan and found it. Briefly discussing with me his findings, he told me that yes, it looked like a “profusion” (change in blood flow like my oncologist had guessed) and said that profusions can either just happen with nothing to worry about or can be caused by something growing causing the blood flow in that area to change. Guess what? He saw something causing the blood flow change. He stated it was maybe 1-2 cm and still too small to biopsy but that there was something definitely there but without a biopsy we couldn’t be sure what it was. He told me that if we revisited the lesion in a couple of months with another scan and if it got larger then we could biopsy it or if it went away then it really wasn’t anything. Either way, he was going to pass the findings on to my oncologist and we would go from there. Fabulous.
December 9, 2013: The following Monday was my appointment with my oncologist, (I call him Dr. El) to discuss the findings of the ultrasound. He had ordered labs so of course more blood sucking from the “vampires”. I’m getting to know them very well at Norris. I guess this could be considered good AND bad. Anyway, as I suspected, Dr. El told me that the ultrasound was inconclusive and then pretty much told me what the ultrasound attending had told me and then said “but I’m pretty confident it’s nothing”. He THEN said “but to be absolutely sure, I’d like to do another scan in a couple of months”, (Oh like, when? My WEDDING???), “and we can see if it gets larger and if we can see it better to see if it’s anything. But I’m confident it’s nothing.”
I was not convinced. But ok, he’s the expert. So yeah, I’ll have another scan. I scheduled that bad boy for a week and a half after my wedding. Good thing we planned on not having a honeymoon, right?
December 20, 2013: First appointment with the OB/Gyn, Dr. Israel, to discuss my fibroids. I knew they were going to have to come out. After discussing my symptoms with the doc she pretty much came to the same conclusion. She wanted to get a look at them so guess what? I had to schedule another test, another ultrasound, this time for specifically for the fibroids. These things are killing me every month. My stomach is so distended and hard when I’m close to “that time of the month” and don’t get me started on the pain in my lower abdomen and legs during that time. Oh, did I tell you I had another half marathon coming up? Yeah, that was going to be a treat because I fully felt at the time that the fibroids were pressing on my bladder because of all the peeing I was doing. Good times. I also told her I was getting married in two months and that I was due to start my period ON my wedding week. Because of the heaviness of my cycle I didn’t want to deal with that and asked if I could take the pill to push back the inevitable at least a few days. She told me she wasn’t sure if it would work but that she would like to start me on hormone therapy anyway to see if it would make my flow lighter and maybe even decrease the size of the fibroid. She prescribed me the pill (she instructed me not to start them until I started my next period) and I set up my ultrasound appointment for the day after Christmas.
Merry Christmas, dammit.
On the upside to that, I got to see The Cult on the second to last show of their Electric 13 tour with Cathy and Dahlia. I was super stoked and shocked to look over at Cathy several times throughout the night and seeing her actually singing the songs. I had no idea she knew so many of them. Of course I played that album to death when it came out so why wouldn’t she know the words. Anyway, December was a good show month for me.
December 26, 2013: Ultrasound for my fibroids. The day after Christmas. I wasn’t doing anything anyway, right? They tell you to come in with a full bladder. Let me tell you, that was the most painful ultrasound I’ve ever had and I didn’t even need to have a full bladder. Want to know why? Because my fibroid is huge. At the time of this ultrasound it had measured in at 12.5 cm. I have a smaller one at 3 cm. Which is usually what they are. The main one is the same size as the huge NET that was found on my pancreas. Anyway, after I had laid down on the table for the tech to do the ultrasound I started having INSANE pain in my abdomen. I knew it was because of all the liquid in my bladder. I begged to go pee and that’s when the tech told me that it was so large so to go ahead because she could see it clearly. After I drained my bladder I laid there writhing in pain. I’d never experienced that before and the tech was at a loss. It really sucked. She did her thing. I left. I wasn’t going to find out the official results of the ultrasound until the first week of January. I was really anxious to start the pill to see if it would a) help b) stave off my period until after the wedding.
Speaking of wedding, Cathy and my parents threw us a very nice couple’s wedding shower a couple of days after the ultrasound. We had fun, great food, and a DIY photo booth. I still haven’t had time to write thank you notes for that either. 😦
Time to enjoy the New Year festivities. Even though Matt was going to work, I had plans with Cheryl to just chill out at home, eat crap and watch movies or start a Game of Thrones marathon to refresh our memories before the season premier in 2014. Well, Autumn and Matt got food poisoning the night before New Year’s Eve and I spent all New Year’s Eve tending to toddler puke (she literally puked for ALL NIGHT and into the morning only tapering off toward the late afternoon. She has NEVER puked before this and both of us were at a loss for what to do) and dealing with Matt not feeling well (and puking). It was a never ending day of laundry and clean up. Neither were happy. Matt ended up not working that night, they both passed out around 10 pm and Cheryl and I watched New Year’s Rocking Eve with the volume down and quiet toasted the new year with frozen sparkling apple cider (I had forgotten to take it out of the freezer. lol). The next morning Matt and Autumn were no longer puking but weak from the day before. I was exhausted. Most of the day was spent sleeping. No one had a hang over.
Happy Freakin’ New Year.
January 2014. Wedding planning in full effect. Trying to finalize everything, get everything ready, make sure everything was taken care of, and trying not to lose my mind with all the medical shit on top of all that.
January 8, 2014: This awesome appointment was to give me the results of my ultrasound on the fibroids and to discuss surgical options with a possibility of having a biopsy. Guess what? Yup… biopsy. I brought Desha with me to this appointment and she got to watch the whole thing. And while that was already uncomfortable enough on top of the biopsy it was actually worth it to watch Desha’s face as she closely watched the ENTIRE PROCEDURE. She was enthralled. I was eager to get the whole thing over. I was supposed to start (my cycle) that day, I actually had started 4 days earlier. I asked the doc if I could start taking the pill in the hopes that after this period I would not have my period on my wedding day. She finished up the biopsy, said I should start taking the pill, but warned that the hormone therapy may not work. The ultrasound was large and she was unsure if the pill would shrink it enough to make any difference. I was about to find out how much of a difference it DID NOT make and, in fact, made things even more difficult.
This would be my last doctor’s appointment until a week and a half after my wedding. In the meantime I did all the detail and final prep things for our wedding. My bachelorette party was the week before and was low key and fun (just what I wanted) and we got to stay at the Mondrian which was awesome. I got to spend time with my friends, ate some good food, and enjoyed the Sunset Strip. I even got to see Dahlia ride the mechanical bull at Saddle Ranch. All in all, January into February was stressful and fun at the same time. All the while, I had this crap in my head but tried very hard not to let it get to me.
On Janaury 19th, I ran my last half marathon before my wedding, the Tinkerbell Half Marathon. This would prove to be the worst marathon I’ve ever run. The fibroid weighed heavily on me that day. I was still bleeding and bloated. I dubbed this one the Pee Break Half Marathon because I proceeded to look for every bathroom and port a potty along the way. With every step the fibroid bounced on my bladder making me want to pee. It took me almost 4 hours. But at least I finished. Thank goodness for Cheryl who had injured herself at the last half marathon. She walked the course with me.
As all this is going on, I’m also VERY conscious of that fact that I have been on my period for almost an entire month. Since I started on January the 4th I pretty much consistently bled until the 31st. I THANKFULLY stopped for the week before my wedding and just after. But even with the brief reprieve, I still had really bad pms symptoms. All this while stressed about the wedding. Not only was I emotional, but I started to bloat really badly. So much so that my dress actually had to be taken out to accommodate for my abdomen getting larger and harder because of the fibroid and my boobs getting LARGER.. and then the real nightmare began…
My wedding was totally awesome, by the way. My wedding and the birth of Autumn are clearly the two best days of my life. I was so happy to see everyone, to be there with everyone, to party with everyone. I am so thankful for everyone who came and for my awesome family for being a part of everything. I am so thankful that Autumn was a part of that day and that she had such a great time she STILL talks about it. To have our daughter there was awesome. I truly am blessed. (I STILL have to write our thank yous for the wedding too…)
I mentioned nightmare. It’s only because four days after my wedding I started my period again. And it didn’t stop for almost 2 months. I will get into the details but basically, with exception to the week and a half before and after the wedding, I was on my period for almost 3 months. This next part will get a little confusing because not only am I dealing with the woman stuff I also have the liver lesion to deal with too so after the date I will label what the specific doctor appointment was for.
February 18, 2014 (Liver Lesion): 10 days post wedding and I find myself back at USC Norris Cancer Center for another CT of the liver lesion. Same drill as always. Blood first and CT afterward. Because I have an allergy to the iodine contrast that’s required for my CT I have to take prednisone (a steroid) for 13 hours before my CT and then benadryl an hour before the CT. This usually taps me out for the day and renders me useless. Someone needs to drive me to and from the appointment and I pretty much sleep it off the rest of the day while Matt tends to Autumn.
February 19, 2014 (Fibroid): I met with Dr. Israel again to discuss (again) the finding of the ultrasound and biopsy and discuss surgical options for removing the fibroid. She tells me that the biopsy was negative for cancer (whew) and that I most likely was a candidate for a laparoscopic myomectomy, which would remove just the fibroids without having to do an open surgery. She asked if Matt and I wanted to have another child. I had told her before that yes, it was something we would like to try to do once I was either at the point in my treatment where I was only getting scanned every year or when I was done being scanned altogether and officially in remission. Since fibroid is pretty big at 12.5 cm she wanted to get an MRI first to make sure the fibroid wasn’t attached to the uterus (I can’t remember the term used) which would mean that I would have to have a hysterectomy. We were hoping for just your normal run of the mill large fibroid that could be removed via myomectomy. I scheduled the MRI.
February 20, 2014 (Liver Lesion): Yes, I had three doctor visits in one week. At my “poking and prodding” session before Dr. El came in to talk to me, Karen, his nurse practitioner and the first person to tell me that my fibroids felt like they were getting larger, asked if I had spoken with the OB/Gyn. I told her what had happened so far and she said “that’s good. They feel like they’ve gotten larger”. Yeah, you said that last time. They are. Anyway, Dr. El came in and told me when we already knew. Yup, something in there. Nope. Don’t know what it is. But then he gives me his usual smile and says “I’m sure it’s nothing to worry about BUT I’m going to do another test. Just to make 100% sure that it’s what I suspect which is nothing.” and then tells me that he wants me to wait about 2 months. Again. Fabulous. I schedule an ultrasound with contrast for April.
In the meantime, I was trying to get back to normal after the wedding, working on the gift thank you list so we could start working on the thank you cards, working, and looking up myomectomy vs hysterectomy (I need to prepare myself for everything) and pretty much gather that i don’t want a hysterectomy and that a myomectomy will be just the ticket to get rid of this stupid fibroid that was STILL making me bleed. In fact, it stayed constant and heavy until I started feeling lethargic all the time, having massive pains in my lower abdomen, weak, and generally not myself. All I wanted to do was sleep and stay in bed. Taking care of Autumn (who is VERY active and constantly doing something from the minute she rises to the minute she closes her eyes for sleep) became REALLY difficult. I was supposed to have lunch with my friend, Michele, but I just couldn’t work up the energy to go. I had to reschedule on her hoping that I could maybe see her the next week. Things just didn’t seem right. So I called Dr. Israel to see if what was happening was normal and if I should maybe stop the pill (because it obviously hasn’t been doing shit. My fibroid felt larger than ever). She asked that I come in.
March 12, 2014 (Fibroid): I went to see Dr. Israel and as I was getting my blood pressure taken by the nurse, she said “are you feeling alright? You look pale.”. Uh yeah, I’m pale. You try looking normal after bleeding for 2.5 months. Anyway, Dr. Israel came in, told me that I needed to stop taking the pill. That the hormone therapy obviously wasn’t working since I had been bleeding for so long. She instructed I start taking iron because she was sure I was low on that with all the bleeding. Luckily that day, Medi-Cal approved my MRI which was scheduled for the week after. My super long period officially ended on March 20th.
March 21, 2014 (Fibroid): MRI day. Funnily enough, I’ve never had an MRI. I’ve had a crapload of CT scans. MRI is a different beast. I’m already a touch claustrophobic. This thing is a claustrophobics worst nightmare. You’re stuck in a tiny tube that feels like a coffin, asked to hold your breath several times (for abdominal scans), and the noise the machine makes is fucking insane and a little scary if you’re jittery. They give you headphones for music to calm you down but Kiss 102 FM was lightly playing in them when I got them and I asked if they could PLEASE change the station as something horrendous was playing (Justin Beiber?) and making me hate the tube even more. Didn’t even matter. The volume was so low and the noise from the machine was so loud I could hear shit. And they made me hold my breath for so long I almost passed out.
No sir. I am not a fan of the MRI. I’d rather have an all day CT scan.
March 26, 2014 (Fibroid): My MRI results appointment. I was told that Matt HAD to come to this appointment because the doctor would explain everything to him and we most likely had to come to a decision on what kind of surgery I would have if the MRI gave me the option to decide. We were seen fairly quickly and were told that my fibroid was not attached to the uterus in a way that would make me HAVE to get a hysterectomy BUT the main fibroid (I have two) had grown AGAIN. It was now 15.5 cm. At the ultrasound in December it had measured in at 12 cm. That’s 3 cm in 2 months. To put it further into perspective, she told us that at the time of my first CT after my surgery 3 years ago, my fibroid was at 7cm. (I was told that most likely the fibroid would deflate after my pregnancy. In this case it did not). This means from March of 2011 to December of 2013 my Fibroid had grown 5cm. But from December 2013 to March 2014 the Fibroid had grown 3 cm. She stated it was a rapid growing fibroid tumor and with my history there could be a chance it was malignant. She told us in this case I was no longer a candidate for a laparascopic procedure because cutting up the fibroid would be bad. If it was malignant and it was cut then cancer cells would be spread so I would need an open surgery. Great. Just what I was NOT wanting. The next thing she told me was what made everything spiral for me. She said that I could have just the myomectomy and remove just the fibroids. But if I opted for that, the fibroids could come back. Also, if the fibroids came back from pathology saying they were malignant then they would HAVE to go back in (another surgery) and they would need to do a total hysterectomy. Our homework was to go home and discuss what I should do. The fibroids definitely needed to come out. So surgery was going to happen. What kind of surgery? This is what I would agonize over. One meant just the discomfort of surgery and recovery. The other meant that PLUS we would never be able to have another kid. We went home to consider our options and promised to call to schedule the surgery within the next week.
So Matt and I go home. I’m crying. Because what the hell do I do? Not only am I having to deal with the fact that I’m now getting scanned every other month now because of the stupid liver thing, but now I have to decide if I should never have kids again because of an “IF it’s malignant”. I had thought the biopsy in January would have told us that. But it wasn’t a biopsy of the fibroid but of the endometrial layer. Well at least I didn’t have endometriosis I guess? We agonized over this over the next week. Asked our parents for advice. No matter what anyone said I still was not sure what to do. I started sinking into depression. There was NEVER a time in my life when I didn’t KNOW I would have TWO kids. I would always joke around and say “if I can have twins then awesome. Give birth once and have two. DONE!”. I know I started late. Hell, there was a time I didn’t think I could even get pregnant. When Matt and I made the decision to get pregnant after I got my degree I didn’t think we could get pregnant. I had no idea I would get pregnant the instant we start trying. And glad I did. Because if it wasn’t for Autumn coming when she did, I probably would never have found the tumor on my pancreas. Yes, Autumn is my angel. She saved my life. And even with the constant scanning, my age, and having to wait to get the all clear from the oncologist, we knew it would be difficult for us to try to have another one. But at least that was an OPTION. With a hysterectomy, there is no option and if opted for the myomectomy there was a chance I could have cancer and that I wouldn’t be around for my only child.
I did not know what to do.
I stopped commenting on Facebook. I stopped returning texts and phone calls. I found myself crying in the shower and at night when Matt and Autumn were asleep. I was constantly in a bad mood. I knew that I needed to make the decision to have they hysterectomy. That I needed to ensure that I did everything in my power to keep cancer at bay and stay around for as long as possible for my daughter and my husband. But making that decision made me feel like I failed Matt, his dad, my parents, and Autumn. Because with that decision, I was denying Matt an opportunity to have another child, my parents and his dad from having another grandchild, and Autumn a sibling. I went back and forth, changing my mind constantly, knowing my parents wanted me to just make sure there was no cancer and have the hysterectomy. Matt was game with anything I decided but he said he wanted me to stay around longer. He said he knew that the chances of us having another one was slim because of my cancer diagnosis and treatments. This just solidified to him that the door was closed. I just didn’t want to close the door.
On April 2nd, I called Dr. Israel and made the decision to have the hysterectomy. I would be keeping my ovaries and cervix (although I needed to decide if I should remove the cervix) and removing my uterus and fallopian tubes with the fibroids. I scheduled the surgery for May 12th.
After that, I chopped all my hair off (no dreadlocks in a hospital bed please), changed my name legally and started to prepare for surgery. All the while wondering if I made the right decision and falling deeper into depression. I found it difficult to talk to anyone about it or to even think about it. I chose to just ignore it but do what I needed to do to prepare for the surgery. When asked if I was ok with my decision by one friend, I burst into tears.
No. I am not ok with my decision.
April 10, 2014 (Liver Lesion): I had my ultrasound with contrast done. I was not happy about having to do it. I was not happy at all. What also didn’t make me happy was waiting for almost an hour to get called in and then being butchered by the asshole who didn’t know how to stick and IV in my arm. “Best IV guy in the department” my ass. I actually screamed when it was put in and it was painful the ENTIRE time I was in the procedure room. Every little jostle of the IV was torture. I begged them to finish the procedure and let me go. It was the worst IV ever. During the procedure they injected me twice with the contrast solution. Why? The Ultrasound doctor who administered my contrast and watched as it flowed through my liver was astounded over how quickly my body accepted the contrast. Where most people take about 30 seconds for the contrast to go through, I took 15. Too fast for techs to start recording. She told me that the lesion may have been in my body longer but the past CT’s may not have caught it because of that. She was going to refer to my other tests and make a recommendation to my oncologist based on what she found. I asked her what her assessment was from what she had seen and she said that she had definitely seen the lesion. She also said that for most people she would assume it was just a benign thing that happens to most people. But because of the type of cancer I have and the fact that my lesion seems to react the same way a neuroendocrine tumor acts in this kind of test, she couldn’t be 100% sure. She was going to discuss with my oncologist.
Fabulous. I had to wait a week and a half to find out what was going to happen.
April 21, 2014 (Liver Lesion): Ultrasound results day. Karen comes in for my “poking and prodding” session. Discusses my upcoming surgery to remove my fibroids and then some. She starts on my throat and feels my lymph node and gives me the quizzical “huh” sound. “Has this always been this large?” She says. “Are you sick?” No. We’ve felt it before but for some reason it feels larger. That was something I was going to bring to her attention at this appointment. She got to it before i could tell her. “I’ll have Dr. El feel it and assess it.”. Fab. Dr. El comes in and tells me basically what the ultrasound tech told me the week before. He’s not 100% sure what it is. But he still feels like it’s nothing to worry about. Then he says “I want to get another CT scan a month after your surgery next month”. SERIOUSLY??? Didn’t we already do that? Plus you have an MRI that shows what’s there. Plus an Ultrasound. WTF??? Then he says “We can order a PET scan”. This from a man who never wanted to get PET scans on me because he didn’t think I needed them. Even with that he says “I’m not sure if it will show anything. But I’d like to see it again. But we may have to biopsy to be 100% sure.”. I ask him why we just don’t biopsy it already. Hell, I’m going in for surgery. Biopsy it then so I don’t have to be awake for that shit. I HATE biopsies. They say they don’t hurt. Bullshit. They hurt! But he says no. Scan first. I want to scream.
I schedule it for exactly one month after my surgery on June 12th.
So there you go. My long sordid piece of shit story so far. I’m sorry to everyone for not getting my thank yous from the wedding and shower out earlier. I’ll work on them while I’m in the hospital and while I’m recovering. I’m sorry for not updating, for not answering emails and texts and calls. There’s more to this than what I’m writing now. This was just to catch you up. I’m a ball of emotion right now. Especially because in about 4 hours I’ll be having surgery and I’m STILL trying to figure out if I should keep my cervix or not.
I’m still pissed and sad that I can’t have another child. I’m worried about my daughter who has been acting out about her health. Who is now constantly saying her stomach hurts and asking for band-aids and having nightmares. Who, every time she falls now acts as if she needs to go to the doctor. I’m pissed that some people seem to think that this surgery is just ok. Not to worry. Everyone gets one. But that’s not the point. I’m upset because when I FINALLY find a guy who I want to have a family with, I have to put him through all this crap AND deny him any further children. A MONTH after we get married. I know he loves me and loves Autumn. But I still feel bad that I can’t give him any more children. Don’t get me wrong, we are blessed to have her. I love Autumn more than anything. But I feel like I’ve failed him. I hate that I have to make him cater to me while I recover. That he has to take care of Autumn alone while I’m in the hospital for a few days. I just hate everything about this.
I guess the big rant will have to wait for later. I have to prep for surgery now. But first I have to give my daughter tons of hugs and kisses and try not to cry in front of her.
Thanks for listening (or reading). Sorry for the lengthy blog. Sorry for it being all over the place despite me putting it in chronological order. Sorry for any and all mistakes. I had to just punch this one out.
I’ll see you guys after my surgery.