Stressgiving

Give me some credit where credit is due. Technically I made it through the holiday without a total disaster. I was; however, admitted to the hospital the day AFTER Thanksgiving.

Not totally surprising, a CT scan revealed that the pain in my abdomen is attributed to yet another bowel obstruction. They don’t see a mass around the area that is obstructed so they aren’t totally sure as to why the intestine is kinked up. 

As I mentioned briefly in the last post, I have had some abdominal pain since Monday so I put myself on “bowel rest” and only took in clear liquids like juice and broth. On Thanksgiving I did go back to solids in very small portions but I suspect it was a bit too soon. The pain increased that evening and the following morning I had a few episodes of vomitting. We knew at that point that it was time for the hospital. My incredible parents packed up and drove the 2+ hours to Women and Infants so I could be at a hospital where they know me (and my super complicated body).

I’ve been here since Friday and cannot take in food or drink by mouth. I have an IV keeping me hydrated. They want to place an NG tube but because it has been difficult to place in the past we need to wait until we can do it at Rhode Island Hospital with imaging.

All I can say for now is that they’re keeping my nausea under control with round the clock Phenergan and treating the pain as needed through the IV. The meds make me pretty sleepy so aside from reading a lot and a little TV I’m sleeping quite a bit. That said, I just ask that any visitors call or text before they come. I’d hate to be a sleepy during a visit! All things considered, I’m not in bad spirits at the moment.

That’s all I have for now. I’ll keep you posted when more information comes to light.

Thanks to everyone that has called or dropped a line to check in ūüíú

(P.s. props to Sarah Breen for making a florist have to write “bowels suck” on a card) 

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Remember, remember the 23rd of November

My life with cancer began exactly four years ago. I’d like to think that in reflection of everything we have overcome in the last four years I’d be in a place to articulate some passionate battle cry but I’m just not there today. Maybe tomorrow, or next week, or next month, but the¬†past few weeks have simply worn me down.

Although I’m feeling much more positive today than I have in recent days, I can safely admit that I’ve had a steady case of the Eeyore’s.

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Early fall I was just feeling some welcome momentum, like I was hitting my stride again. Unfortunately, because cancer doesn’t really¬†give a crap about your personal priorities, a string of challenges started to creep up during the heart of registration period (all my academic advising homies can collectively cringe here).

This includes:

  • Suddenly becoming allergic to one of my chemo drugs
  • Fluid collecting around my lungs. This was rectified by two horrible lung taps¬†that¬†yielded a total of ~ 1250 ML of fluid ¬†between the right and left side.
  • Encountering some intestinal pain as of Monday (that I refuse to let become another full blown bowel obstruction).

I’m not saying it’s the¬†worst set of circumstances, but on a spectrum of “Annoying” to “FOR THE LOVE OF GOD, WHY?!” it was a solid “Can I please catch a break? PLEASE?”

More recently I’ve been physically so exhausted and with that I’ve fallen down the rabbit hole of intrusive thoughts which is never a fun place to be. It’s that place where you feel powerless over what is happening to you¬†and¬†I couldn’t seem to shake that sense of “yuck”. None of my favorite comforts seemed to help. I couldn’t focus enough for deep breathing or meditation. I couldn’t catch my breath after walking 10 feet so exercise wasn’t realistic. Ativan is great to quiet the mind temporarily¬†but when you wake up, the overwhelming¬†thoughts¬†must still be dealt with.

Thank goodness for the plethora of “Christopher Robins” in my life because the only thing I could do that gave me any relief was cry and talk it out. I cried to the people that I love and sought some reassurance.

I didn’t want anyone to cheerlead or tell me that I’m brave or that it will all be okay. Because what is bravery, really, when you didn’t sign up for this? I just wanted validation that how I’m feeling in this moment really sucks.

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My loved ones came through and as always helped to pull me up from the vortex of unproductive thoughts and back to more neutral state of being.

As bleh as I have been feeling, I continue to feel grateful for the people in my life that never waver. I know that you feel powerless too, even more so than me sometimes, and I would not be here four years later without that unconditional love.

I’m also grateful that we have another treatment option available before turning to more clinical trials. I will soon be starting a chemo infusion called Doxil that is typically used for people like me with recurrent ovarian cancer.

Pro’s:

  • It is administered over 2 1/2 hours the first time and only one hour for each infusion after that. No long days in the chemo chair!
  • It is administered once every four weeks. So basically I’ll only have chemo once per month. Woo!
  • No predrugs (ex: Steroids, Benadryl, etc.)
  • My hair will grow back ūüôā

Possible Side Effects:

  • Mild nausea/vomitting (although I don’t get the sense that it’s as bad or common as other treatments I’ve been on)
  • Mouth sores
  • Hand-foot syndrome- “Hand-foot syndrome appears on the palms of the hands and the soles of the feet as redness, swelling, rash, pain, tingling or burning sensations, or peeling skin. It appears after 2 or 3 treatment cycles, but may occur earlier.” Yikes.
  • And per usual lowered white/red blood cell counts

We’ll see how it goes. Dr. Robison feels that in terms of quality of life, this is our best option right now.


 

Like I said earlier, I don’t have an impassioned statement that starts with “against all odds…” and ends with “AND I’LL BEAT THIS!”

Nah…

I’ll wrap this up with a reminder from my mother that we don’t know how the story ends. We just keep walking, one foot in front of the other. And we don’t necessarily know where we’re going. We just go. Taking every minute as it comes¬†even when we are exhausted to our core.

What my tired yet hopeful self¬†knows to be true¬†on this four year anniversary….

Four years later, you still cry it out when the pain overwhelms you.

Four years later, you accept help when you know you only have so much to give.

Four years later, you hug your loved ones a little tighter and lean into that shining light.

Four years later, you try your hardest to absorb the pleasure in what most fulfills your soul.

Most importantly-

 

Four¬†eventful and uncertain years later, the best case scenario holds true-¬†you’re still here.

 

 

 

 

 

 

 

Breathe Easy Lil’ Weezy

Dear Lil’Wayne fans,

I’m sorry if I mislead you. This post is in fact, not about Lil’Wayne at all. I just needed a catchy rhyming title. In order to not totally upset anyone that clicked hoping to hear some news about Holygrove’s finest, here is a gif of Weezy dancing in front of an Audi.

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In other totally unrelated news…

Thoracentesis is the WORST, am I right?!

Otherwise known as a lung tap, a necessary evil after noticing an increase in shortness in breath over the past few months. At first I chalked it up to not being active enough but then it became more frequent and intense in situations that it should not occur at all.

I had this procedure twice before a while back. It is necessary when there is excess fluid buildup (called pleural effusion) between the lungs and the chest wall. Below is the before and after of my actual chest x-ray. Fluid exists on both sides but it is far worse where I circled it in red.

*Please note that the weird gadget you see so clearly on the left side of the image is my chest port. I can’t be¬†totally sure, but I don’t think that having a port is quite enough to make me a cyborg*

Overall they were able to remove almost half a liter of excess fluid in hopes of taking some pressure off of the lung to breathe easier.

Now, the last time I had this procedure I described it in graphic detail and even included a diagram to illustrate. I do recall that this was poorly received by family/friends/readers so instead I will provide a less gross, creative representation of what a lung tap is kind of like.

You know, like if my body is a Capri Sun pouch, and the straw is the tube in my back, and the weird melting kids are fluid being extracted…

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Better?

I must give credit to the best crew: Evelyn, Laura, and Sheila for sticking with me, playing relaxing music, trying to make me laugh whenever possible, rubbing my arms when I was crying or the discomfort was too much, and not giving up even though my body was not totally cooperating.

If anyone was listening outside of the door of that exam room they would be met with utter confusion as the mood bounced pretty quickly back and forth from rip-roaring laughter to hysterical crying with some whale songs mixed in.

I wish I could say that I woke up the next morning feeling total relief but unfortunately I am still pretty short of breath. Not worse than before but not better. The hospital contacted me when I got to work yesterday¬†and urged me to go back to the hospital as soon as possible for another chest x-ray as it appears there may be a “loculation” (jelly like pocket of fluid that happen from multiple lung taps) or “pneumothorax” (abnormal collection of air in the chest cavity from puncture in the lung).

Totally freaked out, I had an involuntary ugly-cry in my office and asked Doug (or front desk advising SAINT) to reschedule my last 6 appointments so I can leave by 2pm.

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Ever the voice of reason, Doug reminded me that my health is priority no matter how busy work is. He found a way to reschedule ALL of my appointments for the day so I could head to the hospital immediately. I am so grateful to my colleagues that always step up to make my life a little easier during tough times.

On my way out I ran into Laurie, a colleague that oversees many offices in my division, and despite her busy day she dropped everything and gave me a ride to Women and Infants. Normally I would drive myself but I was too emotionally drained to be stubborn when she offered. I’m so glad that I accepted the help and we ended up having a nice morning together (considering the circumstances).

I was able to have a speedy x-ray and speak with a radiologist. Luckily, it does not appear that the lung was punctured. THANK GOODNESS!¬†It does appear that there is pocket of air outside of the lung. Because that air is there and shouldn’t be, the lung cannot fully expand which lends itself to the continued shortness of breath.

Sheila and Evelyn suspect that when we did the procedure and were having trouble finding the “sweet spot” where the fluid is and hitting resistance, she hit a loculation (pocket of jelly-like fluid) and that is now where the air is. This is pretty much the best case scenario because it would mean the air is not escaping from the lung and that in time it will just resolve itself. What a relief.

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So that’s that.

At the insistence of my colleagues, I’m taking a few days off to rest and let me lungs do their thing and returning to work on Monday. ¬†I feel guilty for not being there during such a high volume time but as Doug said, it’s not the end of the world and everything will get done. I am no good to anyone else if I’m not 100%. I’m physically and mentally drained. I definitely need this time to get centered and take care of myself.

I’m always reminded of¬†a lesson one of my graduate professors instilled in us:

There is a reason on planes that you put your oxygen mask on first before helping others. If you can’t breathe, you can’t possibly help anyone else survive.

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Also- there is a new treatment plan in the works but to be honest, this post is long enough. I’ll keep you updated soon. What I will say for now is that I will still have two more weeks of Taxol before we switch to something else.

Countdown to real hair begins!

Chemo Fail

Dear Carboplatin,

It’s not you, it’s me. Actually it’s mostly you at this point. I mean, you’re a great chemo and all- don’t get me wrong. You don’t make me that¬†sick. You only come around every three weeks so you’re not clingy. We’ve had some really mediocre times together. But alas we need to break up. We should see other chemo. I wish you the best but…

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Love always,

Your Platinum Reactive Ex


Ok glad we got that out of the way. I hope Carbo didn’t take the breakup too hard.

Yesterday I was treated in the main hospital oncology floor with the scheduled Taxol/Carboplatin desensitization chemo. Due to the allergic reaction that I had to Carbo a few weeks ago, we had decided to try it again under careful supervision and a painfully slow drip. All in all I was there for about nine hours.

To be honest I had¬†slight reservations about being treated on the 4th floor of the main hospital. Inpatient oncology is where I essentially lived for most of the summer and my memories are not the most pleasant. I didn’t know if it would trigger me emotionally but luckily I did just fine. I’m guessing I was okay¬†because I have positive connections with the nurses that I would be seeing. That went a long way. I mean, if anyone from WIH is reading this and knows Alicia, say no more. You can’t possibly frown with her around. She’s a damn good nurse,¬†keeps it 100% with everyone, has a mouth like a truck driver, and a sense of humor¬†to match. She wasn’t assigned to me but came by throughout the day to check in which I was grateful for.

I was happy to see that Lil’ Kim was assigned to me for the day. I knew immediately that I would be in good hands.

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So this is how a de-sense works…

Based on some crazy math formula that I made Kim explain to me in detail, that I now do not remember in the least, they figure out the quantity and rate of Carbo to administer over¬†the course of six hours. It has something to do with your weight and I think the number 140 was in there somewhere….carry the 2? I don’t know. The extent of my math at work is making sure I¬†can add up¬†122 credits and calculate GPA when needed. I’ll leave this one to the experts. In any case, how the chemo is administered is incredibly strategic as to slowly introduce the drug to your body in hopes that the smaller amounts at reduced rates¬†will prevent a reaction. They also take your vital signs every 15 minutes.

Unfortunately going into my LAST bag of Carbo I reacted. Same as last time. I felt a little warm but other than that I felt fine. I turned blotchy and red all over my face, neck, chest, back, arms and hands.

This first picture^ was when I decided to see what I actually looked like because I didn’t know last time. It’s not the clearest of pictures but I’m pretty red (except for my cheeks for some reason? Reverse blush?)

Per protocol they immediately stopped the chemo, pushed Benadryl and gave me more steroids. This reversed the reaction and eventually I was back to my normal pasty-pale self.

I am fortunate that the reaction wasn’t terribly severe. Although,when they pushed the Benadryl I had a strange tickle in the back of my throat and momentary trouble breathing. It resolved itself within a minute or so but was a bit scary at the time. I don’t think this had to do with Carbo at all because it happened almost instantly when the Benadryl was pushed it. I’m guessing it was a response to how quickly the Benadryl entered my system.

Sheila got in contact with Dr. Robison and it was begrudgingly decided that we needed to be done with Carbo. I have heard the term “platinum resistant” before so I asked Betsy if that is what I was now due to this reaction. She kindly explained the following terminology to me that cleared things up:

Platinum Resistant = When the cancer is no longer responsive to platinum based chemo (such as Carbo).

Platinum Reactive =When the cancer IS responsive to platinum based chemo but your body rejects it. Hence, allergic reaction.

So I would fall into the latter category. It’s not that the chemo isn’t working, it’s just that my body is giving it a hard NO. We need to listen to what my body is telling me and move on to something different.

As of this moment I am not sure what the next steps are or how soon we will know what the next treatment plan will be. I’m guessing within the next 2-3 weeks we will have a better idea. I’ve been experiencing some shortness of breath lately so we have a chest x-ray planned for next week. I’m unsure if Dr. Robison will want a CT scan but again, we will know more soon.

So, despite having a long and disappointing day it ended on a side-splittingly hilarious note because Cory, Sheila, and I went to see the comedian Tig Notaro in Providence at the Columbus theatre. She had us laughing so hard the entire time- I was in tears. It was just what I needed.

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If you ever have the chance to catch her stand up, please do. Also- she’s a cancer survivor and her book is amazing so check that out as well if feel so inclined.

That’s all I have for now, but I’ll keep you posted as details about a new treatment plan unfold.