Cancer, Maintenance Therapy, Multiple Myeloma, Multiple Myeloma in your 30s, Radiation

I’ma Keep Running ‘Cause a Winner Don’t Quit on Themselves

Many of my blog titles are derived from song lyrics. Music is so important to me, and when I can’t find the words to express how I’m feeling there is often a song that does it for me. Some people may recognize the lyrics I choose, some may not.

This particular title is from the lyrics of “Freedom” off of Lemonade by Beyoncé. My close friends know I haven’t cared for Beyoncé since she split from Destiny’s Child, and I likely only enjoyed their music because Timbaland had his hand in some of it. Something about Beyoncé’s voice typically makes me cringe (I may have used the word “hate” to describe my feelings for it in the past), and I just haven’t felt the emotion behind her singing. Until now. I realize I’m really late to the Lemonade train, and I haven’t quite hopped on; I’m chasing after it, just out of reach. But there are several songs on this album that are undeniably great (“All Night” is another I have on repeat at the moment).

I am not lost on the meaning behind “Freedom” as I understand it is more about the Black Lives Matter movement. I can’t claim to understand what it feels like to be a person of a different race, historically chained by oppression and afraid of authority. I do understand feeling chained by and afraid of something else though. And as the cliché states, cancer doesn’t discriminate. I am living proof of this statement, as the demographic most diagnosed with Myeloma is old, African-American males. Last I checked, I am none of those things (but please correct me if I have missed something).

A lot of people tell me they admire my strength for maintaining some semblance of a life with everything else I have going on. They apologize for what I’m going through and say they couldn’t handle it like I do. I appreciate the sentiment, but I’m just doing what I have to do to survive. I know there are people out there who would crumble in a corner, their lives wilting away as they feel sorry for themselves. I am not one of those people and I have the people in my life to thank for that. I am strong because of them – because of the people who tell me they don’t know how I do it. It is true I don’t have the freedom to do everything I’d like to, but I try to maintain the most normal life I can. I break the proverbial chains; I appreciate things in a way that anyone who hasn’t had this experience can’t and I REFUSE to give up. I may have been a stubborn child, and I’m still a stubborn adult, but it’s finally paying off (I remind myself of this when my own child is displaying stubborn behavior – she will be a leader one day; she will do amazing things – this is my mantra).

People must also realize that I am not always strong. Sometimes I need other people to be strong for me when I have a moment of feeling sad or sorry that this is happening to me. These moments are fleeting, but they happen. I am not always happy, but neither is anyone else on the planet, no matter their circumstances. And of course I have my moments of roid rage brought on by the almighty Decadron. This shit is no joke and I’m no joke when I’m on it. I’m up, I’m jolted and I can strike at any moment without warning. I can actually see myself acting crazy and I have no control over it. That sounds like a total cop-out – an idiotic excuse to act like a bitch, but this is so much different. Anyone who has taken strong steroids knows what I’m talking about. I need to be more dedicated to Yoga at this point, because they just increased my dose of steroids from 20mg per week to 100mg. Woo!

I am finally healing well after the biopsy of the tumor behind my right eye two weeks ago. Most of the bruising is gone and the swelling has gone down immensely. I was a bit shocked by my appearance afterward, as the nurses DID NOT AT ALL prepare me for what to expect following the surgery, although I inquired more than once. I literally looked like I ran into Mike Tyson’s fist:

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My eye is not just closed in this picture; it is swollen shut. This was the day after my surgery, right after having an ice pack on my eye for about an hour (hence the red cheek). My dumbass was sitting in the OR prep station asking the assistant surgeon about wearing makeup to a wedding that Saturday. May I point out that had I known my eye was going to look like this I would not have been as concerned about my ability to wear mascara or false eyelashes because I look sleepy without eye makeup on? Just saying. He just said to look tired. The proper response would have been laughing hysterically at me in my face and telling me there’s no way I’ll be able to wear makeup because I’ll have a black eye that I won’t be able to open for a week. I did not attend said wedding three days after the surgery.

The surgery did not come without its hiccups. That morning the doctor and I discussed using dissolvable stitches so I didn’t have to drive a total of seven hours just to have stitches taken out. Following the surgery, the assistant surgeon started asking me about making an appointment to come back to get my stitches taken out.

“Woah, woah,” I said. “Dr. Hayek said he was going to put in dissolvable stitches so I don’t have to drive all the way back here to get them taken out!”

“Oh…well, we didn’t put in the dissolvable ones. We’ll have to take these out and re-stitch you right here,” he explained.

“Well, it feels like I’m still numb, so go ahead and do your thing. This can’t be any worse than having stitches following the birth of my child after a little tearing and subsequent episiotomy when the epidural didn’t take as well as they hoped.” The people in the area had a nice laugh over that statement. My birth story is a different one of frustration (although totally worth the frustration).

I closed my left eye (my right was already closed from the increasing swelling) and he began taking out the stitches. All of the sudden I could tell he had them out because everything got a little brighter on the right side, although I still couldn’t see anything. He stitched me back up in minutes and I was good to put some ice on it while I waited for the drugs to wear off.

John came back to my area while I recovered and let me know the doctor told him that I should expect some numbness on my head following the surgery, as the tumor was sitting up against the nerve that controls my forehead. How long it would last, he couldn’t tell me. The right side of my head is numb from the top part of my eyelid all the way back to the crown. When I get an itch in this area and attempt to scratch it, nothing happens. It feels like I’m washing a wig when I wash my hair. I’m slowly getting used to the sensation (or lack thereof), but this would have been another nice-to-know fact BEFORE the surgery. I spoke with the doctor a week post-op, and he said that I will get sensation back anytime between a month or six post-op. Because I’m already beginning to feel some pain around the edges of the numb area, he said I am progressing quickly and it will likely be closer to a month for me.

While I was in recovery I was in a lot of pain, so the nurse (who was not at all friendly) gave me some Fentanyl. And then she gave me some more. And then she gave me a Lortab. I would like to point out that I had not had anything to eat for about 15 hours prior to this moment, so all of the pain meds made me feel pretty sick. The nurse wouldn’t give me any anti-nausea meds, but instead handed me some graham crackers. Gee, thanks. Tell me again how I’m supposed to swallow food when I feel like I’m going to hurl? Tell me again how I’m not supposed to be scared shitless of puking when I’ve just been told the pressure caused by throwing up, sneezing or coughing could cause my eyeball to come flying out of the socket? Just wondering. I chewed one bite of the crackers for over a minute and forced myself to swallow. That’s all I could handle.

I got out of surgery just before 1:00 p.m. and was wheeled to a consult with Radiation Oncology for a 2:00 appointment. This appointment was added on at the last minute, so it’s all I could get. I’m not happy when someone wakes me up on a normal day; it takes me a little while to become approachable in the morning or after naps. Waking up out of anesthesia and feeling like shit because a doctor just removed half of my eyelid, took out my eyeball, scraped around behind it and then put everything back into place are not the elements that make for a happy awakening. Let’s just say I was not in a good mood. Bitchy Anne was in full force.

I was meeting with the Radiation Oncologist at Emory because it had been suggested I do my radiation there. Dr. Lonial was a little concerned about me receiving radiation on my head and wanted to ensure I receive treatment with the latest technology. Thankfully after talking to the folks at Emory they concluded I can do my radiation at home (it’s not like I go to some backwoods facility in Columbia). The conversation that led up to this point was annoying, although I laugh thinking back on it now.

“It doesn’t look from the scans that the tumor is against any nerves,” the Radiation Oncologist explained to me before I interrupted.

“Well, the Ophthalmologist just cut me open and didn’t remove it all because he said it was up against the nerve that controls my forehead, so I’m pretty sure it’s up against a nerve,” I told her, attempting to hold back my bitch tone, but not succeeding.

“Oh. Okay. Well it doesn’t look like the tumor was there in the CT scan performed by Emory last May,” she continued.

My husband chimed in, likely in an attempt to keep me from biting off the woman’s head, “The Ophthalmologist told me he looked at the CT scan from last year and he saw the tumor on the scan,” he told her, not quite as meanly as I would have.

“Oh, I see. Well, that’s his specialty, so I guess he can spot something like that better than I can.”

Okay woman, whatever. The Radiation Oncologist and her Fellow proceeded to talk to me about having a mesh mask made for radiation treatment. They asked me if I was this swollen prior to the surgery. I wanted to say, “No you fucking dumbasses, I was not. I just had my face cut open and my eyeball and part of a tumor removed. NO I WAS NOT THIS SWOLLEN BEFORE! HAVE YOU NOT NOTICED MY EYE HAS GROWN IN THE PAST FIVE MINUTES WHILE WE HAVE BEEN TALKING?!” A simple “no” sufficed.

They concluded I shouldn’t have a mask made that day – we should wait for the swelling to go down. Well look at the brains on Brad! How many years of med school did it take for you to be smart enough to come to this educated decision? Finally they stated the treatment should be straightforward and they see no reason I shouldn’t be able to get the treatment at home at SCOA. Praise Jesus. Let’s go home. Likely they just didn’t want to deal with my bitchy ass any longer than they had to.

The following week I had an appointment with my Oncologist at SCOA where we talked about the care plan my doctor at Emory put together for me. Because my bone marrow biopsy results came back with less than 5% plasma cells in the marrow, they still consider me to be clean, and I can remain on maintenance levels of chemo. I am switching to a newer chemo pill, similar to what I was on previously, but more potent. It is still a derivative of Thalidomide, so regular pregnancy tests are required so I don’t get pregnant with any mutant babies (I’d be shocked if I was at all fertile after all of these chemo treatments anyway). The pill is called Pomalyst and I take it for 21 days rather than 14 like my previous pill. I will also receive infusions of a newer immunotherapy called Darzalex, and I get to take a shit ton more steroids than I was on previously. I’m going to be such a peach! I think the doctors are trying to make my husband divorce me.

I had another appointment with the Radiation Oncologist at SCOA later in the week, and he assured me they have the latest technology as they updated all of their equipment in the past year. I have nothing to worry about. I will get 10 radiation treatments, which will take two weeks to complete. The biopsy results came back as a plasmacytoma, just as the doctors suspected it would. This is good news in that there is no other cancer causing the tumor. Plasmacytomas also respond very well to radiation, so this is easily treatable. I mentioned my waste of a copay consultation with the Radiation Oncologist at Emory and the doctor laughed, stating he’s never seen a patient that close following a surgery. It just didn’t make much sense. Yeah, buddy, I agree.

I started both of the chemo treatments this week. The pill is easy enough, but the infusion is a little more intense. I arrived at the doctor at 7:30 this morning to start my infusion. After the pre-meds of steroids, they start the infusion (1000ml total) very slowly at 50ml an hour, increasing by 50ml an hour each hour until they get up to 200ml per hour. I was at 100ml per hour for 55 minutes before I started having a reaction and they had to stop to give me Benadryl. My head became congested out of nowhere and it was so bad within minutes I had to start breathing through my mouth. No matter how much I blew my nose, the congestion kept coming back immediately. I started to develop a sore throat and I was coughing and sneezing, so they waited an hour to start the infusion back at 50ml an hour, allowing the Benadryl to do its thing. Luckily I wasn’t wheezing and my throat didn’t close up, which are possible side effects. I spoke up quickly enough when the congestion started to become a problem, before it had a chance to escalate. I was able to increase up to 200ml an hour eventually and finished the infusion a little after 6:30 p.m. I at least have remote access to my work desktop, so I was able to work while I was in the chair. Then I could work on my blog after I was finished working at 4:30. So I had a productive day, nonetheless.

I go back Thursday to have my mesh mask fitted for my radiation treatments and I’ll get my schedule made for those. Since I’ll be doing chemo and radiation at the same time, I will work from home those two weeks. I just don’t know how my body is going to respond to all of this, but at least it is short-term.

Through all of this mess, I refuse to quit. I refuse to stop trying – to stop living a life I can be proud of. I don’t think I’m extraordinary for feeling this way; I expect no less from myself. I’ve talked to the doctors about plans B and C if the current plan doesn’t work for me (CAR T Cell Therapy and/or an Allogeneic Stem Cell Transplant with my brother as the donor have been mentioned as back-up plans) and I am hopeful that I have several options to keep me around for the long haul. Cancer can’t get rid of me this easily. I never give up without a fight. Trust me, you don’t want to fight with me and neither should cancer.

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Cancer, Maintenance Therapy, Multiple Myeloma, Multiple Myeloma in your 30s, Relapsed Multiple Myeloma, RVD

Reboot…

It’s not what I wanted to hear…they found cancerous cells in my bone marrow biopsy results. I sat there and calmly absorbed the news because I knew freaking out at that moment would do nothing for me. Part of me was in shock because I don’t feel like I’m getting sick. But I didn’t even know I was sick last year until I was really sick, and that’s just the nature of this sneaky disease. Left to my own devices, I’d likely push myself right back into the hospital, unaware of what’s going on inside my body. The past few weeks have come with some setbacks and challenges, but I am staying hopeful that all will turn out okay.

I went back to Emory May 10th for my year post transplant bone marrow biopsy, axial skeletal scan and bone density scan and then returned on the 24th for my results. The bone scans came back without problems, so that is good news; however, my biopsy did not return the results for which I was hoping. They found a chromosomal abnormality – the same one that resulted in my stage 3, high risk diagnosis last year (t4:14). They told me the plan is to do two cycles of more intensive therapy followed by some more intensive maintenance than what I have been doing. I’ll be going back to RVD (Revlimid, Velcade and Dexamethasone), which gave me very favorable results last year. Previously my maintenance consisted of Velcade only, so we’re ramping things up a bit. I’ll be on higher doses of everything for the first couple of cycles, and then we’ll scale the dosage down for maintenance.

I was feeling okay about all of this until I received a call from my doctor here in Columbia on the 25th (the day after hearing my results at Emory) stating that the blood tests performed at SCOA on the 23rd looked much worse than what Emory had used from the 10th. My MSpike went from .1 to .7 in two weeks, and this is a sign the disease is progressing very quickly, which is the nature of my particular diagnosis. The moment I received that call was the moment everything sunk in for me – here we go again. Thankfully I am monitored closely and this has all been caught early, before the disease has had time to do too much damage. The doctors still believe they can get this resolved with two cycles of more intensive therapy, so that is what we are starting with. If I need more after we assess blood work, we’ll do more.

I’ve traipsed through the myriad of emotions I imagine come with hearing your cancer is back after only a year post transplant, just 9 months since receiving word you achieved remission. Devastation, anger, disbelief. I’ve made my way to acceptance because feeling sorry for myself, getting pissed and acting like this isn’t happening aren’t realistic ways of attacking this situation. Even after hearing I achieved remission I knew the chance of recurrence was very high, so I prepared myself the best I could for the chance of hearing the news, but of course I hoped it wouldn’t happen this quickly. Now that the circumstance has presented itself, although my diagnosis is not as bad at this point as it was last year, the news has hit me a little harder than it did last January after my initial diagnosis. Maybe it’s because I’ve had so long to let the reality of all of this really sink in. Last year I didn’t have time to think about anything before starting treatments and preparing for my transplant. Now I have taken back as much of my life as possible only to have that compromised again, and it has taken me some time to accept that fate. I think it’s understandable and normal in this situation, though.

This isn’t just happening to me, though; it’s happening to everyone who cares about me and I know it’s hard for them, too. I sit here and wonder whether it’s harder for me to actually have to go through this or if it’s harder for the people who love me to have to watch me go through this. I don’t have much control over what happens to me. I can choose to stand up and fight my ass off and refuse anything but positive results. I have that much control over my situation. But the people around me have no control, and I imagine it leaves them feeling pretty helpless. No one can change what’s happening to me, but the people in my life do a really good job of making me happy regardless of my situation. I’m lucky to be surrounded by such amazing people, whether it’s family, friends or coworkers. They help me remember that while the whole cancer thing sucks, I have much more positive areas to focus my attention.

So rather than dwell on the negative, I’m doing my best to focus on the good parts of my life. I’m not ignoring what is going on (it’s kind of hard to ignore when you have to go to the oncologist no less than twice a week and fill your body with poison to hopefully get better), but I’m doing my best not to dwell on the shitty parts of life right now. Because I do have so much to be happy about.

I’ve been enjoying some wonderful time on the lake with my family. My husband sold one of his motorcycles to buy a boat and I must say it’s been a wise investment. A pontoon is definitely more family friendly than a motorcycle (let’s don’t get too bummed for him – he still has two left in his brood). A little lake therapy is definitely helping my mood. We spent Memorial Day weekend at the lake with my family and it was filled with a lot of relaxation and laughter (brought on mostly by adult time playing Cards Against Humanity). It was exactly what we all needed.

My daughter is 2 1/2 now, and she’s so much fun. Watching her imagination at work and personality grow each day truly astounds me. The stuff that comes out of her mouth keeps me laughing, although I REALLY have to watch what I say around her these days. Her selective hearing seems to only allow her to hear, absorb and repeat the particularly bad things I say. Shit and fuck happen to be two of my favorite words, so I’m trying hard to get my ass in gear. The steroids I’m taking don’t aid my efforts. At all. This is also why you’ll rarely, if ever, see me drink in front of my child. Two drinks in and I start using “fuck” like a comma.

What I’m most looking forward to this summer is a trip my husband and I are taking to St. Lucia (all that lake time will help me work on my base tan before this trip – I’m not trying to get burned and add Melanoma to my list of cancers). My doctors are working my chemo schedule around my trip, so I should be in good shape for it. We leave in a little over five weeks, and I get more excited as each day passes. I planned this trip last year as I sat in the chemo room for hours at a time to give me a positive focus and something to look forward to in the coming year. Since I had the time on my hands to actually do some proper planning, we’re not going the all-inclusive route for this trip. I’m looking forward to doing a lot of exploring while we’re there. I had hoped we’d be able to use this trip to celebrate a year cancer free, but instead we’ll just use it to celebrate life in general and further our appreciation of the beauty the world has to offer. I’m looking forward to hiking the rainforest and the Pitons, taking a sail, lounging on the beach, and enjoying the stunning views from our villa for the week.

The whole cancer thing has really put mortality into perspective for me. I don’t know if I’ll be here for 2 more years or 50, and if cancer will be my demise – who knows? I do know that I’m going to make the most of the time I do have because I am in complete control of how I choose to live my life while I’m here. I don’t have time to sulk about my situation. I have to move on, continue living my life and making memories with the people I love while I can. I know I’ll have bad days; everyone has bad days, regardless of their personal situation. It’s my responsibility to move past the bad and soak in all the good. That, I can control.

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