Ok, so last week can be summed up in one word: HELL. What was supposed to be my celebratory lap- final chemo treatment- turned into a four day hospital stay on the dreaded fourth floor of Swedish Issaquah. It was there that I made my peace with my personal Lord and savior. I told Jesus- "F*CK the IRS. Take me now."
Obviously it didn't turn out that way. I'm still here.
So what landed me there? Well let me tell you....Last week I posted that I had a pneumonia diagnosis. That was wrong. Last Monday, coughing, breathless and tired beyond words, I turned up at my oncologist's office and told them very simply: "I cannot take another step." Laurie, the awesome receptionist/scheduler said the most loving thing to me. She said: "Let me get you a wheelchair."
I was wheeled over to nurse Sue who immediately ordered fluids to help with dehydration...I was totally confounded because honestly, I thought I was dying. Nurse Debbie stepped in too, plugged me up to my fluids and sent in the good Dr. Wahl.
Dr. Wahl took one look at me and said the second most loving thing of the day: "I'm admitting you." I weakly lifted my head and said "Bless you." While entertaining thoughts of my impending death, Dr. Wahl explained: "Look there's something going on with these lungs of yours and we need to get to the bottom of it. So, I am ordering a bronchoscopy. You'll undergo the proceedure tomorrow. We'll culture the lung tissue and find out for sure what is going on." Then she said something that filled me with dread: "And because we want a clean biopsy, I cannot give you any drugs today." WHAT THE HELL? I mean, I really wanted morphine. I wanted to entertain hallucinations. I wanted anything that got me out of that awful reality that I was facing. Instead, I got Tylenol.
WCDO, Paul saw me to my room and then had to return to his life of normal breathing. I was jealous beyond words. I didn't call ANYONE. I couldn't talk. Seriously. Between the breathlessness and the coughing, I couldn't get a word out. Not a one. So, thank GOD for texting. And that's just what I did. I texted my parents in Ohio and my sister, Kate- who is the official plug puller in my will. I told them I was being hospitalized. I didn't even try to tell them I was gonna be alright. Because seriously, I wasn't sure that was the truth. And then I fell asleep, praying I wouldn't wake the Hell up.
That's when I heard it- a foot shuffle and a gentle cough. I weakly cracked open an eyelid and saw my savior: Vinny! My awesome nephew. Vinny explained: "Grandpa called and told me you were in the hospital with Paul." That was all he had to say. I handed over my cell phone and put him in charge.
Things kind of moved on from there. Rather than go into a ton of detail, I will tell you this- I have had nothing but amazing experiences with everyone at Swedish Issaquah; that is until I was admitted to the dreaded fourth floor.
Let me just tell you, the fourth floor is a place that should be reserved for kids who talk back to their parents and other unloved family members. Out of the seven nurses, three of them were good. The CNA's must have been hired out of Craig's List- under the stalkers and perv section. For example, while my fever was spiking at 103 post proceedure, my day nurse shouted out loud, in front of Vinny and my very best gal pal, Patty- "She's going septic. I need to pack her in ice." Of course, this scared the shit out of them both. And somehow, I managed to find the strength and energy to crack open an eyelid and croak out: "That's bullshit. I'm not going septic." I was right. And don't even get me started on the male CNA who was really, really in to giving me a sponge bath. I tell ya...there's just too much porn in the world today. Of course, while rocking my oxygen tube, I told him to go the hell away. See? Still kicking.....
Oh- and the results? Right....you're probably wondering what the results were. Well I have none other than Bleomyicin Toxicity of the lungs. No pneumonia. The up side is that I don't have pneumonia, right? The downside is that the toxicity, while not fatal, takes about 6 months to a year to heal. My lungs still hurt like hell. I'm tired. And with the help of really good make-up (thank you, Nars....) I manage to walk around looking somewhat healthy.
So, no victory lap just yet...True- no more chemo. But, this? Well, this I hadn't bargained for.
Wednesday, October 31, 2012
Wednesday, October 17, 2012
CANCER: Pneumonia
...now if there's anything at all I've learned from my cancer experience, it is that doctors are not God- or even God-like. And I'd be an ass for thinking otherwise. This isn't to say they aren't good people. No, I'm not implying that. But, really when shit is hitting the fan, they are often just as lost as we are.
So where am I going with this? Well, lemme tell ya. On Wednesday October 3- the evening of the inaugural presidential debate, I found myself sitting in the very posh emergency room of my favorite haunt, Swedish Issaquah. Honest, they really do it well. And here's what was going down- my lungs felt like they were on fire- from the inside. There is simply no other way to describe it. Events leading up to this lovely experience included chemo the previous week as well as a couple of different steroid inhalers offered to me over the phone via my medical oncologist. Now, I am always dubious of any drug prescribed over the phone. It kinda feels like I'm not being heard and I'm getting some shit thrown my way just to quiet me down. Seriously? Like that would work.
Nope- so instead of trotting over to the pharmacy to pick up any number of curious steriods, I demanded to be seen be some person who went to medical school and earned the right to wear the long white coat. So...there I was. In the ER.
Now, here's what was going down: my back and hips were positively SCREAMING from the stupid white blood cell drug. Honest! I almost crawled into bed. And you know what happened? I got sad. Really, really sad. I realized that while yes, my hips hurt like Hell- like childbirth hurt, honest- I was in the ER for something completely separate from that- and wasn't going to be treated for back pain, as that wasn't the primary problem. Nope. I was what I would like to call a "train wreck." Lungs hurting, hips and back screaming out, and my eyebrows looking pathetic. I was a hot mess.
Of course, I was bolstered up by the amazing members of team Moy: Michael Carius and West Coast Director of Operations, Paul. The kids were tag teamed with both Hana- the sitter and baby daddy, Warren.
Michael and I arrived before Paul. So, we settled in. We turned on the awesome flat screen TV in my private ER suite and planned to watch the debate. Paul swept in fresh from happy hour and announced with his white-guy like authority, that there was no way we would be able to watch the debate with him in the room. And, to call Paul animated would be an understatement. At one point he was standing up and shouting- (YES, I didn't know white people did that) SHOUTING at poor Barack that he needed to call Romney a liar. It was at that point when Michael and I conceeded defeat and calmed his ass down with some terrible spaghetti western on none other than the "Western Channel." It worked.
During this, I was wheeled over to the CT scanning room. And, the CT tech was the very same dude I had to do another CT scan of my body. Funny...He didn't remember me. I was like "Um, really? Just how many African American cancer patients do you get up in here?" Seriously! Focus.....
The CT done in under five minutes. I then layed around en suite for another hour or so waiting to find out the results. The kind nurse, Mike was all kinds of an amazing host. He plied me and the team with yummy treats of cheese, crackers and a host of juice options. He also swathed me in those delicious heated blankets. Total silver lining to all this cancer business.....
So, the MD pops in- not the cute one this time- and let's be honest, we were all pretty happy about that....and informs me that I have pneumonia. He hands me 1,000 MGs of antibiotics and tells me to pick up the new steroids and antibiotics the following day. SWEET! Because the alternative to the pneumonia diagnosis was something called "Bleomyicin Toxisity." (Bleomyicin- "Bleo", for short- is one of the four drugs in my chemo regimine.) It can cause permanent and often fatal lung damage if the toxisity isn't caught in time.
But, here's the thing- the dude in the white coat was wrong. It was the bleo. And all I got to show for it was a yeast infection from the antibiotics, that I took for my fake pneumonia.
We finally settled on a proper diagnosis just yesterday, when I met with Dr. Wahl. Because effects of the steroids were working themselves out of my system, my lungs were hurting again and I had a yucky dry cough. (Michael, to his lovely credit, determined that I was feeling sick due to the fact that he was leaving town on Tuesday. RIIIIGGGGHHHHHTTTTT!) Again, Michael DID NOT go to medical school.
WCDO Paul and I chatted after the diagnosis. I complained to him that the cough makes me sound like I'm sick. He replied: "Ah, just tell people it's TB." Lovely.
On the road to recovery now....I'm staring down another 6 - 12 weeks before the lungs are better. I am popping some interesting "beads" to calm the cough and trying on ibuprophen for pain and inflammation management. Radiation will be delayed for a week or so to allow for more time to heal up. Next up- the last chemo treatment on 10/25.
And the wheel in the sky keeps on turning.....
So where am I going with this? Well, lemme tell ya. On Wednesday October 3- the evening of the inaugural presidential debate, I found myself sitting in the very posh emergency room of my favorite haunt, Swedish Issaquah. Honest, they really do it well. And here's what was going down- my lungs felt like they were on fire- from the inside. There is simply no other way to describe it. Events leading up to this lovely experience included chemo the previous week as well as a couple of different steroid inhalers offered to me over the phone via my medical oncologist. Now, I am always dubious of any drug prescribed over the phone. It kinda feels like I'm not being heard and I'm getting some shit thrown my way just to quiet me down. Seriously? Like that would work.
Nope- so instead of trotting over to the pharmacy to pick up any number of curious steriods, I demanded to be seen be some person who went to medical school and earned the right to wear the long white coat. So...there I was. In the ER.
Now, here's what was going down: my back and hips were positively SCREAMING from the stupid white blood cell drug. Honest! I almost crawled into bed. And you know what happened? I got sad. Really, really sad. I realized that while yes, my hips hurt like Hell- like childbirth hurt, honest- I was in the ER for something completely separate from that- and wasn't going to be treated for back pain, as that wasn't the primary problem. Nope. I was what I would like to call a "train wreck." Lungs hurting, hips and back screaming out, and my eyebrows looking pathetic. I was a hot mess.
Of course, I was bolstered up by the amazing members of team Moy: Michael Carius and West Coast Director of Operations, Paul. The kids were tag teamed with both Hana- the sitter and baby daddy, Warren.
Michael and I arrived before Paul. So, we settled in. We turned on the awesome flat screen TV in my private ER suite and planned to watch the debate. Paul swept in fresh from happy hour and announced with his white-guy like authority, that there was no way we would be able to watch the debate with him in the room. And, to call Paul animated would be an understatement. At one point he was standing up and shouting- (YES, I didn't know white people did that) SHOUTING at poor Barack that he needed to call Romney a liar. It was at that point when Michael and I conceeded defeat and calmed his ass down with some terrible spaghetti western on none other than the "Western Channel." It worked.
During this, I was wheeled over to the CT scanning room. And, the CT tech was the very same dude I had to do another CT scan of my body. Funny...He didn't remember me. I was like "Um, really? Just how many African American cancer patients do you get up in here?" Seriously! Focus.....
The CT done in under five minutes. I then layed around en suite for another hour or so waiting to find out the results. The kind nurse, Mike was all kinds of an amazing host. He plied me and the team with yummy treats of cheese, crackers and a host of juice options. He also swathed me in those delicious heated blankets. Total silver lining to all this cancer business.....
So, the MD pops in- not the cute one this time- and let's be honest, we were all pretty happy about that....and informs me that I have pneumonia. He hands me 1,000 MGs of antibiotics and tells me to pick up the new steroids and antibiotics the following day. SWEET! Because the alternative to the pneumonia diagnosis was something called "Bleomyicin Toxisity." (Bleomyicin- "Bleo", for short- is one of the four drugs in my chemo regimine.) It can cause permanent and often fatal lung damage if the toxisity isn't caught in time.
But, here's the thing- the dude in the white coat was wrong. It was the bleo. And all I got to show for it was a yeast infection from the antibiotics, that I took for my fake pneumonia.
We finally settled on a proper diagnosis just yesterday, when I met with Dr. Wahl. Because effects of the steroids were working themselves out of my system, my lungs were hurting again and I had a yucky dry cough. (Michael, to his lovely credit, determined that I was feeling sick due to the fact that he was leaving town on Tuesday. RIIIIGGGGHHHHHTTTTT!) Again, Michael DID NOT go to medical school.
WCDO Paul and I chatted after the diagnosis. I complained to him that the cough makes me sound like I'm sick. He replied: "Ah, just tell people it's TB." Lovely.
On the road to recovery now....I'm staring down another 6 - 12 weeks before the lungs are better. I am popping some interesting "beads" to calm the cough and trying on ibuprophen for pain and inflammation management. Radiation will be delayed for a week or so to allow for more time to heal up. Next up- the last chemo treatment on 10/25.
And the wheel in the sky keeps on turning.....
Monday, October 1, 2012
CANCER: Rewind
Oops, like all things cancer and doctor related, I shoulda known better.....I just shoulda....
You know how I was told by not one BUT FOUR different medical oncologists that a determination on radiation treatment would be made AFTER my PET scan? HA! Joke's on me....
After meeting my new radiation oncologist- Dr. James F. Spiegel, I learned that radiation was in the game plan from jump. That's right....Apparently when you get diagnosed with Stage II Hodgkin's Lymphoma, Unfavorable (bulky mass) you also get the gift of radiation- GUARANTEED!
Dr. Spiegel broke it down like this: "You most certainly will need radiation. I'm sorry no one told you that from the beginning." Isn't it endearing how doctors apologize but don't really apologize???
Ok, that part didn't exactly take me out at the knees....but what follows did.
Stupid me, I ask- "so how much radiation are we talking about?" Now in my feeble little mind, I'm thinking five days for a week- two weeks MAX. See? Now why do I bother having any thoughts AT ALL? Turns out, the gift behind door number two is: four weeks of radiation, five days a week....Nice. Well done?
And get this- Dr. Spiegel is trying to tell me that "No, radiation isn't nearly as awful as chemo." Really? I'm listening.....
He goes on to say: "Well, you'll feel tired- but not like you do with chemo." Ok, that sounds good.
Then "You may also develop irritation of your throat- kinda like how you feel when you have strep throat. And, well you may not want to eat or drink anything for about two weeks. But don't worry. Once we stop the radiation that pain will go away."
Ok- that sucks....but if I time this thing right, I'll actually LOSE weight during the dreaded holiday season of gorging....silver lining?
And then he says: "And, there's a small chance that the lining of your heart and or lungs may get irritated. In that case, we've got medicine that will fix it up."
Again? How in the HELL is this BETTER than chemo? Right- no more hair loss???
And finally he offers this one-two punch: "And, sometimes radiation can affect your thyroid function- causing you to develop a hypo-thyroid condition. We can fix that with drugs- but you'll need to be on them for the rest of your life."
WHAT THE HELL?
So, by my estimation, with radiation, I get to keep my hair, poop on schedule and get fat.
Again, how in the hell is this better than chemo?
Stay tuned, folks....the fun times begin on 11/26. Last two chemo treatments are lined up for 10/11 and 10/25....And apparently the sexy port in my chest will come out sometime in November, which then gets me off the blood thinners.
Progress???
You know how I was told by not one BUT FOUR different medical oncologists that a determination on radiation treatment would be made AFTER my PET scan? HA! Joke's on me....
After meeting my new radiation oncologist- Dr. James F. Spiegel, I learned that radiation was in the game plan from jump. That's right....Apparently when you get diagnosed with Stage II Hodgkin's Lymphoma, Unfavorable (bulky mass) you also get the gift of radiation- GUARANTEED!
Dr. Spiegel broke it down like this: "You most certainly will need radiation. I'm sorry no one told you that from the beginning." Isn't it endearing how doctors apologize but don't really apologize???
Ok, that part didn't exactly take me out at the knees....but what follows did.
Stupid me, I ask- "so how much radiation are we talking about?" Now in my feeble little mind, I'm thinking five days for a week- two weeks MAX. See? Now why do I bother having any thoughts AT ALL? Turns out, the gift behind door number two is: four weeks of radiation, five days a week....Nice. Well done?
And get this- Dr. Spiegel is trying to tell me that "No, radiation isn't nearly as awful as chemo." Really? I'm listening.....
He goes on to say: "Well, you'll feel tired- but not like you do with chemo." Ok, that sounds good.
Then "You may also develop irritation of your throat- kinda like how you feel when you have strep throat. And, well you may not want to eat or drink anything for about two weeks. But don't worry. Once we stop the radiation that pain will go away."
Ok- that sucks....but if I time this thing right, I'll actually LOSE weight during the dreaded holiday season of gorging....silver lining?
And then he says: "And, there's a small chance that the lining of your heart and or lungs may get irritated. In that case, we've got medicine that will fix it up."
Again? How in the HELL is this BETTER than chemo? Right- no more hair loss???
And finally he offers this one-two punch: "And, sometimes radiation can affect your thyroid function- causing you to develop a hypo-thyroid condition. We can fix that with drugs- but you'll need to be on them for the rest of your life."
WHAT THE HELL?
So, by my estimation, with radiation, I get to keep my hair, poop on schedule and get fat.
Again, how in the hell is this better than chemo?
Stay tuned, folks....the fun times begin on 11/26. Last two chemo treatments are lined up for 10/11 and 10/25....And apparently the sexy port in my chest will come out sometime in November, which then gets me off the blood thinners.
Progress???
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