So it is Saturday following the chemo that I had on Monday.
And my perspective on chemo has changed radically from the afternoon that I wrote that post after having spent 3 days in the hospital following my infusion.
I arrived home around 5:30 in the evening and felt completely fine. My lovely friend and cultural anchor, Chris, came over to help celebrate the last of the infusions. We were having a great time watching our trashy TV, eating our usual Monday night fare from AG Ferrari. Then all of a sudden pain struck. At first I thought that I had eaten too much. But it quickly became apparent that this was not the case. My flanks began to ache. The onset of the pain went pretty rapidly from uncomfortable to downright hurting. In addition to the pain, my face began to flush and swell.
We quickly Googled cytoxan side effects and found the following:
If you experience any of the following serious side effects, seek emergency medical attention or contact your doctor immediately:
- lower back or side pain;
- chest pain, difficulty breathing, or swelling;
We decided at this point that the best thing to do was head to the ER at UCSF.
Great, another freaking trip to the ER. Argh.
We quickly grabbed all the things that I would need in case I was admitted. I am becoming an expert on grabbing things in a rush to go to the hospital.
Got to the ER in about 10 minutes. I am very lucky to live super close to UCSF so getting there is always a snap.
Walked into the ER and the waiting room was packed with all kinds of sick people waiting to be seen. I plopped down my ID and insurance card which I always keep handy these days and let the admissions person what was going. It should be noted that you can’t go into a whole slew of detail with the folks admitting. They might be nurses, I’m not sure, but they are not the ones that will necessarily prioritize you or get you much help.
Thankfully, there was a nurse sitting next to her that heard that I had had chemo that day and they immediately grabbed me and pulled me in to get vitals and story. The nurse (or murse / man nurse) was probably the most honest that I have had in the ER and very sweet. He let us know that that they have 39 beds, but 50 people. But then he told me that he would put us on highest priority and went on to say that there were probably 7 people that didn’t even need to be there (ie, go see your damned doctor).
We waited about 30 agonizing minutes while the pain got worse and worse. I couldn’t sit, I couldn’t stand. My back was aching to high hell.
Finally they got me a bed and a room. I saw the ER resident that I had seen on the last trip – Dr Max – rolling into another room so when my doctor came in to get the story, I asked her if I could have Max again because with my complicated story, I felt that to get the background data would take a long time. She said that she would find out if he could do it and left.
Meanwhile, I continued to writhe around in pain. It was getting worse. My mom was doing her best to comfort me while looking completely helpless and sad. I can’t imagine how it feels to see your child (no matter what age) be in pain like that, but from her face I could tell that it is a horrible thing that no parent should have to go through.
Mark showed up around 11pm and graciously took the helm so that my exhausted mom could go home and get some sleep. It was then he who did his best to comfort me. One thing can be said about him and that is that when in a crisis he is one of the best remedies. For me, at least. I don’t know what it is, but he goes into stand-up comic mode which is both raw and extremely funny. When you are sitting in a room feeling like you are about to die there is something to be said for laughing through the pain.
The pain began worsening. It had now moved from my sides to my upper thighs. It was a dull, but hardcore ache that wouldn’t go away. I was literally writhing in pain. It is funny because you always read that expression in books or hear it on movies, but I had never experienced it. Until now and the only thing I could think was “writhing in pain” as a way to describe it.
Then the vomitting started. Every lovely bit of dinner. And more.
With all of this pain going on, I also needed to empty my bladder. And, yes, emptying my bladder consists of self-catheterizing. Sadly, because I was shaking so badly I was unable to complete this mission on my own accord which left me only one other option and that was to get a nurse to do it for me. This was nothing new to me and at this point I have left any potential shame behind me when it comes to hospital folks viewing the nether regions.
In comes Nurse Carli (yes, like iCarli and don’t think we didn’t actually have a conversation about this) to milk my bladder. But she only ended up taking a urine sample which obviously didn’t empty the bladder completely.
Fast forward to who knows how long later and I tell Nurse Aaron (a dude obviously) that I really need to be cathed. Nurse Aaron, by the way, is a young, hip looking dude who I can immediately tell that I like by his relaxed and cool demeanor. The exact kind of nurse you might expect to find in San Francisco, but not what you would picture as a nurse (and not gay either). Aaron gets his supplies and starts to go to work while Mark is busting jokes left and right (completely inappropriate jokes that were funny as hell). Nurse Aaron is laughing his ass off while attempting to insert a catheter into my urethra. I’m laughing and writhing in pain while this man nurse is digging around mah stuffs. Nurse Aaron says that he can’t get it in. He says he has “never missed”. He tries 4 different trays before finally admitting defeat and deeming my urethra worthy of a Guinness Book of World record for hardest to cath and goes off to find Carli to see if she can defeat the urethra from hell.
Carli and Aaron stand outside the door talking and a bet ensues. No lie. Carli comes in and we start to laugh about the bet that she is confident that she can win. She tells me that Aaron deems himself “the vagina whisperer” and we both agree that this is clearly where he going wrong since the urethra is not the vagina. Team Girls!
Carli gets up in my business while Nurse Aaron is standing behind the curtain waiting for sounds of relief. No sounds come. Everyone seems unable to make this happen. My bladder is damned full. This is the point that Nurse Aaron comes back in the room. I have had some pain killer by IV but it is again wearing off and I’m feeling not so hot again. We decide to use the tiny catheter that we used for the urine sample and are able to insert that while I am sitting there. So picture this scene…
Me sitting on a hospital gurney in agony. Mark standing on my left side making jokes. Nurse Carli standing on the right side of me with her hands all up in my beeswax. A spotlight shining brightly right in my crotch. Nurse Aaron standing at the end of the bed. My urine going into a bucket with a tiny catheter sticking out of my urethra which Carli calls “your little wee wee”. Me in pain. All of us laughing and joking at the ridiculousness of this scene. And then Dr Max pokes his head in and looks completely disturbed and slightly embarrassed because my legs are spread over the handrails of the gurney and he basically has the money shot in his face. He ducks out and we call him back in. He seemed to hesitate, but reluctantly joined the cathing party. Yes, there were now 4 people standing in this room having a conversation.
It has to be said that trips to the ER are neither pleasant, nor enjoyable. But this particular one consisted of the most pain I have ever had in my entire life with one of the funniest experiences I have ever had. Thank you, Nurse Aaron, Nurse iCarli and Dr Max for appreciating our sick senses of humor and joining in the party.
Around 4am I was given an IV of Benadryl to help stop the swelling and rash on my face, neck and back. This coupled with the dilaudid made me pass out. Poor Mark stayed up and kept a watch on me. They had told us that I would be admitted for a day or so of observation and that we were just waiting on a room. I woke up around 7am still in the ER and still waiting for a room. My mom had come back and Mark had gone home to get some sleep. Changing of the guards again. Finally I was taken up to my room.
And it was there that I stayed for the next 3 days being poked at and prodded. The only fun I was having was when I was given the dialudid by IV. If you can call that fun. They also started giving me oxycotin. I hated it. It made me sleep and sleep.
At the end of the 3 days the determination was that I had had a bad reaction to the chemo (DUH!) and that I had a urinary tract infection which is pretty common in people who cath and are immunocompromised. I was put on antibiotics and sent home.
And here I am. At home. The three days felt like a month. I came home and found myself checking things in the refrigerator that I had bought on Sunday because it seemed like they should have gone bad. That is how hospital time works. One day can be an eternity and when you come out it feels like you are back at the bottom of a really big hill that you have to climb up yet again.
I am feeling good again – as good as I can feel these days – and my spirits are up. With every trip to the hospital or every unexpected turn of events I find myself getting more and more sentimental and contemplative. I went to the farmer’s market yesterday at the Ferry Building in San Francisco and sat on a bench looking around at all the people. It made me teary-eyed. My feeling was one that went from a deep sadness for my situation to jealous of all the people to joyous and back to sad. An endless loop of confusing emotions.
Then a little girl, whose dad was organizing bags on the bench next to me, looked at me with an inquisitive face as I was sitting there with my cane and my medical mask covering my face. I said hello to her and she immediately brightened up and gave me a smile and said hello back. Then she asked, “Why do you have your face covered up?” in the sweetest and most innocent way that only a child could ever do. I replied, “So that I don’t get sick. Isn’t that crazy?!?”. She looked back at me and gave a little giggle and said, “Yes. That is crazy.”
Yep, folks, that is how this goes. Life is crazy, but damn it, it is a beautiful thing.