Yesterday I had my 8th and final chemo treatment - YAY! To make sure that I was really done with that place they were running extra slow and the whole visit took close to 8 hours to complete - including a 2 hour lay-over in the chemo infusion waiting room. My mom was with me and we made the best of it! I didn't really know what to expect after my last chemo - a trumpet fanfare, confetti canon? Instead we just said goodbye and headed out of "exam level 3" - hopefully for the last time.
Last week I met with my radiation oncologist. John pointed out that in my last post I presumptuously used male pronouns when referring to this new doctor. "What would the WWW (women's group and the hospital) have to say about this!" My apologies to women doctors everywhere - and my radiation oncologist is certainly not a "he". She is lovely, and smart as hell. I feel like I am in good hands for the next stage of my treatment. 2 weeks of radiation therapy to my chest scheduled for the end of July. She wanted to wait 4-6 weeks (apparently this is "protocol" that my oncologist wasn't familiar with - sigh - why don't doctors ever talk to each other....) for my chemo to wash out and then start the treatments. I will go to KU med every day for 2 weeks to get the treatments.
Radiation is scheduled to be done August 2nd - and then I think I will finally feel done. But, I'm starting to wonder if that is even true? Will there ever be a day I don't think "please don't relapse?". Hopefully as I put some time and distance between me and Hodgkins, I can reclaim my life where I didn't worry about my health, but I know I will never take my health for granted another day in my life.
So cheers to the journey and the end of chemotherapy - it is hard to believe I have come so far. This experience gets lumped in those parts of your life (like having a newborn come to live at your house forever) where you think how did time go so fast when it felt like it was going so slowly... I couldn't have asked for a better support system - so thank you to each and every person that helped out, held me close in your heart, and made me feel loved. I am so very blessed.
Friday, June 7, 2013
Thursday, May 23, 2013
chemo 7 of 8.
Another chemo day today - lucky number 7. As usually, I am an insomniac tonight thanks to the whopping dose of steroid I get as one of my pre-chemo drugs - so I thought I would take this opportunity while the rest of my family sleeps peacefully to update the blog.
As many of you know, I am scared of my port. I have a deep yet unfounded mistrust of the thing. And I just think it is gross. So anyway, for the last two chemos, they have been having some problems with my port not drawing blood. It flushes fine, but getting blood out had been proving tricky. During chemo #6 it stopped "drawing" at a critical time when the nurse was giving my Adriamycin and they have to draw back blood just to check that the needle and port are all in the right place so the chemo goes in my vein and not into my skin. The horrors of displaced Adriamycin were kindly dished out in great detail by a very enthusiastic new nurse during my initial chemo - so I always get a little (irrationally) nervous during this medication. Then during Chemo #6 I see my nurse messing around with my line and then "huh - it won't draw.." PANIC!!!! (deep breath) AHHHH! (deep breath) .... After several flushes the port cooperated for the rest of the treatment.
Today I went in to get my labs drawn and the port will not draw. Not one tiny drop. My nurse is flushing the line and having me assume various yoga poses like "lay right side down in this hospital recliner" and "stand with hands above head and cough" and my favorite "turn head to left, right arm up and deep breath". This resulted in no change. PANIC!!!! (deep breath) AHHHHH! :)
But the answer was simple - I just needed a medicine called alteplase (TPA) to help dissolve any fibrin/clot deposits in my line. My dad put it best - "Like Drano?" Yes.
After an hour my port was back to good as new! Hooray! The funny part of this is that as a resident, I ordered TPA for kid's lines at the hospital fairly frequently - I would spend exactly 15 seconds thinking about someone else's port not flushing, order the TPA and move on. When it is my port, I worry. This is yet another little lesson I hope to bring back with me to the hospital when I get to sit on the rolling chair again - even little things are a big deal when they are happening to you.
So, the port is working and chemo went really smoothly. I brought my book on meditation and read US weekly. Judge me all you want people. My nurse was funny today - and while I liked that she told me she was ready for a drink at 10:30 this AM I'm not sure that really falls under the purview of professional conduct. (note to self: stop telling kids I wish I was wasted when I go back to work - doesn't sound as cool as I thought) I'd like to give a little credit where credit is due to all the nurses out there. When my chemo nurse walks in each treatment I hold me breath and hope she will be great. My nurse two weeks ago was not great and it made the day drag on (literally) and was a much less pleasant experience. Today, my nurse was friendly and efficient. She made me aware of the plan and schedule without being overbearing. She did not seem annoyed to be there (despite the aforementioned alcohol comment). I am lucky to work with a great group of nurses at work and I hope they know how much their attitudes and communication styles shape our patients' experience.
My mom has been taking me to chemo the last few treatments and it has been really nice. I feel like we don't get many chances to talk face to face without a certain 5 year old and 1 year old running interference. We haven's solved ALL of the worlds problems yet, but we still have one more chemo to go. Today when I was getting checked in, we noticed a woman in her 70s getting checked in for chemo by herself. I overheard her saying that she had done chemo for colon cancer 3 years ago and now it was back; this was her first chemo since her relapse. And she was all alone!! So here is my public service announcement - if you know anyone that it getting chemotherapy ask who is going with them. Not just dropping off/picking up - but who is going with them. If the answer is no one - you should volunteer for a session. I find it so comforting to have someone else in my little 6x7foot cubby. My mom and I chat, eat and make fun of people - and those are all my favorite things. John always does some calisthenics involving deep lunges which make me laugh. More importantly, I get someone on my team. To worry about my port, to tell me to relax, to say its all going to be ok. It is boring, and the visitor chair honestly doesn't look terribly comfortable - but still you should go!
I meet with the radiation oncologist next week to make the plans for my radiation treatment. I am very interested in what he has to say and what all is involved - because I was apparently asleep during this day of medical school. My distaste for for physics, social isolation and the dark has always made the field of radiology seem vastly boring and over my head at the same time. I'm looking forward to getting more information so I can stop saying really dumb things like "i guess they will shoot me with some, like, beam-thing...???"
June 6th is the final chemo - hooray! Still have to get to feeling better from Chemo 7, so I haven't started the official count down yet. But the end is definitely in sight - and that is a very good feeling.
As many of you know, I am scared of my port. I have a deep yet unfounded mistrust of the thing. And I just think it is gross. So anyway, for the last two chemos, they have been having some problems with my port not drawing blood. It flushes fine, but getting blood out had been proving tricky. During chemo #6 it stopped "drawing" at a critical time when the nurse was giving my Adriamycin and they have to draw back blood just to check that the needle and port are all in the right place so the chemo goes in my vein and not into my skin. The horrors of displaced Adriamycin were kindly dished out in great detail by a very enthusiastic new nurse during my initial chemo - so I always get a little (irrationally) nervous during this medication. Then during Chemo #6 I see my nurse messing around with my line and then "huh - it won't draw.." PANIC!!!! (deep breath) AHHHH! (deep breath) .... After several flushes the port cooperated for the rest of the treatment.
Today I went in to get my labs drawn and the port will not draw. Not one tiny drop. My nurse is flushing the line and having me assume various yoga poses like "lay right side down in this hospital recliner" and "stand with hands above head and cough" and my favorite "turn head to left, right arm up and deep breath". This resulted in no change. PANIC!!!! (deep breath) AHHHHH! :)
But the answer was simple - I just needed a medicine called alteplase (TPA) to help dissolve any fibrin/clot deposits in my line. My dad put it best - "Like Drano?" Yes.
After an hour my port was back to good as new! Hooray! The funny part of this is that as a resident, I ordered TPA for kid's lines at the hospital fairly frequently - I would spend exactly 15 seconds thinking about someone else's port not flushing, order the TPA and move on. When it is my port, I worry. This is yet another little lesson I hope to bring back with me to the hospital when I get to sit on the rolling chair again - even little things are a big deal when they are happening to you.
So, the port is working and chemo went really smoothly. I brought my book on meditation and read US weekly. Judge me all you want people. My nurse was funny today - and while I liked that she told me she was ready for a drink at 10:30 this AM I'm not sure that really falls under the purview of professional conduct. (note to self: stop telling kids I wish I was wasted when I go back to work - doesn't sound as cool as I thought) I'd like to give a little credit where credit is due to all the nurses out there. When my chemo nurse walks in each treatment I hold me breath and hope she will be great. My nurse two weeks ago was not great and it made the day drag on (literally) and was a much less pleasant experience. Today, my nurse was friendly and efficient. She made me aware of the plan and schedule without being overbearing. She did not seem annoyed to be there (despite the aforementioned alcohol comment). I am lucky to work with a great group of nurses at work and I hope they know how much their attitudes and communication styles shape our patients' experience.
My mom has been taking me to chemo the last few treatments and it has been really nice. I feel like we don't get many chances to talk face to face without a certain 5 year old and 1 year old running interference. We haven's solved ALL of the worlds problems yet, but we still have one more chemo to go. Today when I was getting checked in, we noticed a woman in her 70s getting checked in for chemo by herself. I overheard her saying that she had done chemo for colon cancer 3 years ago and now it was back; this was her first chemo since her relapse. And she was all alone!! So here is my public service announcement - if you know anyone that it getting chemotherapy ask who is going with them. Not just dropping off/picking up - but who is going with them. If the answer is no one - you should volunteer for a session. I find it so comforting to have someone else in my little 6x7foot cubby. My mom and I chat, eat and make fun of people - and those are all my favorite things. John always does some calisthenics involving deep lunges which make me laugh. More importantly, I get someone on my team. To worry about my port, to tell me to relax, to say its all going to be ok. It is boring, and the visitor chair honestly doesn't look terribly comfortable - but still you should go!
I meet with the radiation oncologist next week to make the plans for my radiation treatment. I am very interested in what he has to say and what all is involved - because I was apparently asleep during this day of medical school. My distaste for for physics, social isolation and the dark has always made the field of radiology seem vastly boring and over my head at the same time. I'm looking forward to getting more information so I can stop saying really dumb things like "i guess they will shoot me with some, like, beam-thing...???"
June 6th is the final chemo - hooray! Still have to get to feeling better from Chemo 7, so I haven't started the official count down yet. But the end is definitely in sight - and that is a very good feeling.
Thursday, April 25, 2013
Drumroll please...
2 months.
These have been two of the longest months for me - and I am sure for my family as well. At the same time, it is hard for me to believe that 2 months have actually passed. Time flies when you are havingfun chemo?? On April 11th I had my 4th chemo which meant it was time for another PET and CT scan. We waited till this Tuesday to have the scans to give the last round of chemo a chance to do its thing - then test day arrived.
I was at the hospital for a couple of hours for my scans. I really dislike days when I go to the main hospital for tests and procedures. I feel so "patient-y" on those days, arm bands, npo directions, ugly waiting rooms, disrobing in semi-public places, and lots of people that don't know me asking me how I am feeling. I never really know what to say - fine? great? best day ever? What I know is if you say "cold" they will only bring you one thin blanket that won't help the situation. So I had the PET scan and CT of my neck, chest, abdomen and then waited....
We met with the oncologist today and (drum roll please) the cancer is gone according to the PET scan. YAY!!!! And - I am doing more chemo. Huh?
For the PET scan I am injected with a radioactive sugar solution. Cancer loves sugar because it is so metabolically active - so the sugar is routed there and lights up on the scan. On my first scan I had the large mass of lymph nodes in my chest plus enlarged lymph nodes in my neck, near my trachea and below my clavicle. This time around - none of those areas lit up - just the normal brain, heart, kidneys. This is a great result after only 2 months of chemo and shows that my cancer is very chemo responsive.
So why more chemo you may be asking? I asked the same question today - with several current journal articles hot off the presses of the NEJM (he was excited to see me!!) If you remember, this makes me stage 2a with a favorable prognosis. Right now there is controversy in the oncology world regarding the best treatment for me. (The word "controversy" in the medical world means we have no idea and are making our best guess.) 2months of chemo + radiation, 4 months of chemo + radiation, 4-6 months of chemo and no radiation. The studies show that 2months of chemo is fine for people with very limited disease. My doctors concern is that I am at the very upper end of the 2a spectrum because i had lots of lymph nodes in the same area AND continue to have some enlargement (not active) on the repeat CT scan. He is worried that if I stop at 2 months I would increase my chances of relapse.
If there is one thing I know, it is that I don't want to relapse. The other thing I know is that the path my cancer takes is largely out of my control ( aren't i so zen these days...) what we can control is how we treat upfront, so I have agreed to another 2 months of chemo followed by a lower dose of radiation. As my doctor says "play all our cards up front". I am thrilled to have the news of my scan to lift my spirits and a plan to move forward. Because, man i love a good plan.
John and I are so happy that the PET scan is negative. It is the best news we could have hoped for. I will admit that I am a little bummed to be doing 2 more months of chemo - but I think I am making the safest choice for the long term. And - I did chemo number 5 today - so now I am 5/8ths done. Let the countdown begin!!
Hair update - still falling. I would estimate that 40-50% has fallen out. But pulled back into a ponytail or bun you probably wouldn't notice. If the current trend continues, I think I will have a VERY cool style for summer. :)
Thanks and hugs to everyone for their ongoing support and love. Especially my parents who stay with us after EVERY chemo and have helped our house stay a home amidst all the chaos. They are amazing.
These have been two of the longest months for me - and I am sure for my family as well. At the same time, it is hard for me to believe that 2 months have actually passed. Time flies when you are having
I was at the hospital for a couple of hours for my scans. I really dislike days when I go to the main hospital for tests and procedures. I feel so "patient-y" on those days, arm bands, npo directions, ugly waiting rooms, disrobing in semi-public places, and lots of people that don't know me asking me how I am feeling. I never really know what to say - fine? great? best day ever? What I know is if you say "cold" they will only bring you one thin blanket that won't help the situation. So I had the PET scan and CT of my neck, chest, abdomen and then waited....
We met with the oncologist today and (drum roll please) the cancer is gone according to the PET scan. YAY!!!! And - I am doing more chemo. Huh?
For the PET scan I am injected with a radioactive sugar solution. Cancer loves sugar because it is so metabolically active - so the sugar is routed there and lights up on the scan. On my first scan I had the large mass of lymph nodes in my chest plus enlarged lymph nodes in my neck, near my trachea and below my clavicle. This time around - none of those areas lit up - just the normal brain, heart, kidneys. This is a great result after only 2 months of chemo and shows that my cancer is very chemo responsive.
So why more chemo you may be asking? I asked the same question today - with several current journal articles hot off the presses of the NEJM (he was excited to see me!!) If you remember, this makes me stage 2a with a favorable prognosis. Right now there is controversy in the oncology world regarding the best treatment for me. (The word "controversy" in the medical world means we have no idea and are making our best guess.) 2months of chemo + radiation, 4 months of chemo + radiation, 4-6 months of chemo and no radiation. The studies show that 2months of chemo is fine for people with very limited disease. My doctors concern is that I am at the very upper end of the 2a spectrum because i had lots of lymph nodes in the same area AND continue to have some enlargement (not active) on the repeat CT scan. He is worried that if I stop at 2 months I would increase my chances of relapse.
If there is one thing I know, it is that I don't want to relapse. The other thing I know is that the path my cancer takes is largely out of my control ( aren't i so zen these days...) what we can control is how we treat upfront, so I have agreed to another 2 months of chemo followed by a lower dose of radiation. As my doctor says "play all our cards up front". I am thrilled to have the news of my scan to lift my spirits and a plan to move forward. Because, man i love a good plan.
John and I are so happy that the PET scan is negative. It is the best news we could have hoped for. I will admit that I am a little bummed to be doing 2 more months of chemo - but I think I am making the safest choice for the long term. And - I did chemo number 5 today - so now I am 5/8ths done. Let the countdown begin!!
Hair update - still falling. I would estimate that 40-50% has fallen out. But pulled back into a ponytail or bun you probably wouldn't notice. If the current trend continues, I think I will have a VERY cool style for summer. :)
Thanks and hugs to everyone for their ongoing support and love. Especially my parents who stay with us after EVERY chemo and have helped our house stay a home amidst all the chaos. They are amazing.
Wednesday, April 3, 2013
chemo 3 and other updates
Hello blog world - it has been awhile! I've been a pretty lackadaisical blogger lately, mostly because there hasn't been that much to report. Last week I had my third ABVD infusion. Things went uneventfully, which is always good. We celebrated Easter at home with my parents and went to John's grandpa's house this weekend. All the cooking and running around wore me out- but we had a fun time. The kids had so much fun hunting for eggs and eating candy!
I have been doing pretty well - fatigue and chemo brain - but that usually starts to get better about a week after the treatment. I have had some neuropathy from the chemo too - feels like pins and needles in my hands and feet - but again that usually goes away after the first week - so waiting for that to happen today....
The big news of the week: my hair has started falling out. YIKES! About 75% of people that receive my type of chemo will lose their hair - so I knew it was the most likely thing to happen. But, now that it is actually happening - I am kind of upset. It is really strange to lose hair. It seems like it should hurt - if any other part of my body fell off/out, I would know about it. But not my hair - it just falls away without any warning at all. So far, I haven't lost enough hair to look different so we will see if it just thins or if it all falls out. Ugh.
In happy news -my oncologist thinks it is great that my hair is falling out - it means that the chemo is working and working well.
The current plan is for chemo #4 next week and then a PET scan the last week of April. Fingers crossed.
I have been doing pretty well - fatigue and chemo brain - but that usually starts to get better about a week after the treatment. I have had some neuropathy from the chemo too - feels like pins and needles in my hands and feet - but again that usually goes away after the first week - so waiting for that to happen today....
The big news of the week: my hair has started falling out. YIKES! About 75% of people that receive my type of chemo will lose their hair - so I knew it was the most likely thing to happen. But, now that it is actually happening - I am kind of upset. It is really strange to lose hair. It seems like it should hurt - if any other part of my body fell off/out, I would know about it. But not my hair - it just falls away without any warning at all. So far, I haven't lost enough hair to look different so we will see if it just thins or if it all falls out. Ugh.
In happy news -my oncologist thinks it is great that my hair is falling out - it means that the chemo is working and working well.
The current plan is for chemo #4 next week and then a PET scan the last week of April. Fingers crossed.
Friday, March 15, 2013
who me, worry??
Hello, my name is Julia Bracken, and I am a worrier.
I worry about all sorts of things, all of the time. Sometimes I joke that if I stopped worrying, I would forget to breathe. Most of the time, being just a tad bit anxious works out pretty well. It is a great way to get into medical school, and an even better way to keep track of the every changing parade of patients as a resident. It works out perfectly in my life as a doctor - I get paid to worry about other people every single day. In my personal life, I can keep the worry and planning down to a dull roar, I am sometimes annoying to go on vacation with (only if it is annoying to know where you are eating dinner that night AND how to get there - just saying) - but overall i function pretty darn well with my mind on worry overdrive.
Now, whether I like it or not, I am the patient - and one thing that is not doing my any favors is all the worry. Will my port hurt/work/break/leak/get infected? Will I have fever and be admitted to the hospital. How long? What if I need a fluid bolus but the resident doesn't realize I need a fluid bolus? When is my hair falling out? Is it falling out right now? (no- just checked). What if, what if, what if. Anyway - my brain can give me a one way ticket to crazy town sometimes, usually at my 9pm bedtime. I've been coping OK - and can derail the train most of the time knowing I am in skilled, caring hands and that everything will be just fine - but what if its not? sigh.
So, what was I worrying about yesterday you ask? Chemo #2.
When a person is neutropenic, you are instructed to avoid people that are sick. That is one of the reasons I am not working at the Children's Hospital right now - too risky. The whole thing becomes laughable when the boys come home harboring the lasted germs from daycare - but what can you do! I would advise everyone to buy stock in hand sanitizer.
At the suggestion of a trusted colleague and mentor - I have ordered a book called Full Catastrophe Living - a book on the practice of mindfulness. I am hopeful that this will help me to real in the anxiety when I don't need it keeping me up at night. I am excited to learn these new skills and look forward to becoming a yogi/zen master - hopefully in a matter of weeks - right???
The boys are doing well. Hudson worries (where does he get it??) about me and about my hair. The other night he said he thought it was getting shorter. He also shared that when my hair does fall out I am going to look "pretty strange". Well said, young man. Finn continues to be happy and wild - my dad says he lives life with gusto - and no truer words have been said.
Last weekend my sweet friends hosted a "Scarf Soiree" in my future bald head's honor. It was so nice to get out the the house (in make up and high heels, no less) and see the women I am so lucky to hold close to my heart. The party was fun, food was amazing, and I left with enough hats/scarves/cozy outfits/blankets/lotions/jewelry and trashy magazines to supply the entire oncology clinic! I also received a very generous gift from many of my co-workers at CMH. I am so blessed. Thank you.
I worry about all sorts of things, all of the time. Sometimes I joke that if I stopped worrying, I would forget to breathe. Most of the time, being just a tad bit anxious works out pretty well. It is a great way to get into medical school, and an even better way to keep track of the every changing parade of patients as a resident. It works out perfectly in my life as a doctor - I get paid to worry about other people every single day. In my personal life, I can keep the worry and planning down to a dull roar, I am sometimes annoying to go on vacation with (only if it is annoying to know where you are eating dinner that night AND how to get there - just saying) - but overall i function pretty darn well with my mind on worry overdrive.
Now, whether I like it or not, I am the patient - and one thing that is not doing my any favors is all the worry. Will my port hurt/work/break/leak/get infected? Will I have fever and be admitted to the hospital. How long? What if I need a fluid bolus but the resident doesn't realize I need a fluid bolus? When is my hair falling out? Is it falling out right now? (no- just checked). What if, what if, what if. Anyway - my brain can give me a one way ticket to crazy town sometimes, usually at my 9pm bedtime. I've been coping OK - and can derail the train most of the time knowing I am in skilled, caring hands and that everything will be just fine - but what if its not? sigh.
So, what was I worrying about yesterday you ask? Chemo #2.
 |
| artistic photo courtesy of john bracken |
And everything was fine. No catastrophes.
I had my labs drawn and my white blood cells have dropped significantly. Last week my ANC (absolute neutrophil count) or then number of while blood cells you need to fight off infection went from 5000 (normal) to 900 (not normal) So now I am officially neutropenic. On a side note, John and I were taking bets on what my ANC would be and I guessed it perfectly - because I am a lab-whisperer. Ha! My doctor is please with the drop in my counts as this means the chemo is working. Next was the chemo parade - it went much quicker (4 hours) this time. The port acted beautifully and hurt less than last time. Today I feel pretty good - a little tired, but better than after the first infusion. Hoping that continues through the weekend.
When a person is neutropenic, you are instructed to avoid people that are sick. That is one of the reasons I am not working at the Children's Hospital right now - too risky. The whole thing becomes laughable when the boys come home harboring the lasted germs from daycare - but what can you do! I would advise everyone to buy stock in hand sanitizer.
At the suggestion of a trusted colleague and mentor - I have ordered a book called Full Catastrophe Living - a book on the practice of mindfulness. I am hopeful that this will help me to real in the anxiety when I don't need it keeping me up at night. I am excited to learn these new skills and look forward to becoming a yogi/zen master - hopefully in a matter of weeks - right???
The boys are doing well. Hudson worries (where does he get it??) about me and about my hair. The other night he said he thought it was getting shorter. He also shared that when my hair does fall out I am going to look "pretty strange". Well said, young man. Finn continues to be happy and wild - my dad says he lives life with gusto - and no truer words have been said.
Last weekend my sweet friends hosted a "Scarf Soiree" in my future bald head's honor. It was so nice to get out the the house (in make up and high heels, no less) and see the women I am so lucky to hold close to my heart. The party was fun, food was amazing, and I left with enough hats/scarves/cozy outfits/blankets/lotions/jewelry and trashy magazines to supply the entire oncology clinic! I also received a very generous gift from many of my co-workers at CMH. I am so blessed. Thank you.
Friday, March 8, 2013
Thursday, March 7, 2013
chemo brain
The last week has been hard. There were times I thought my family might be featured in a country song - first Finn was sick with a GI bug, then a blizzard, then then dog had a bladder infection, then more throwing up from Finn (usually on me). And on top of it all - I was trying to feel better after chemo. I have been SUPER tired. Like when you are pregnant, times one million. As if being tired wasn't enough, there is this phenomenon affectionately termed "chemo brain" that is a foggy feeling that is almost impossible to describe. I know I'm not the smartest person in the world, but I am pretty used to forming logical thoughts in my brain all day long. Post chemo - my brain was a giant puddle of mush. Simple jobs like driving my kids to school, returning emails and getting dressed were all giant, complicated exhausing tasks. Needless to say, I was feeling pretty useless.
Then I went to see my oncologist yesterday and I told him of my extreme fatigue and overall horrible feeling that had lasted a full week after my chemo - he asked if anyone was sick at home and I said yes. He asked if I had any GI symptoms and I said yes (I thought they were related to chemo) and he said "you are sick!" I caught whatever Finn had - which hopefully explains why I have been feeling so miserable for so long. Good news - my oncologist thinks that my fatigue and "chemo brain" shouldn't last for a week next time - here is hoping! I am happy to report that after 16 hours of sleep in the past 24 hours, I am feeling much better. My brain is working again and I might even stay up till 9pm.
I wanted to share a couple of pictures from our recent photo session with Shea Photography. I think they turned out great.
Then I went to see my oncologist yesterday and I told him of my extreme fatigue and overall horrible feeling that had lasted a full week after my chemo - he asked if anyone was sick at home and I said yes. He asked if I had any GI symptoms and I said yes (I thought they were related to chemo) and he said "you are sick!" I caught whatever Finn had - which hopefully explains why I have been feeling so miserable for so long. Good news - my oncologist thinks that my fatigue and "chemo brain" shouldn't last for a week next time - here is hoping! I am happy to report that after 16 hours of sleep in the past 24 hours, I am feeling much better. My brain is working again and I might even stay up till 9pm.
I wanted to share a couple of pictures from our recent photo session with Shea Photography. I think they turned out great.
Thursday, February 28, 2013
oncology part 3 and chemo part 1
First things first - I met a new oncologist yesterday at KU and I adore him. He was kind. He gave me more information than I knew I wanted to know. He had printed (and annotated in blue ink prior to our meeting!) relevant articles on the treatment on Hodgkin's to help ground our conversation (conversation!!) about the best treatment strategy for me. And, on a personal note, he wrote lots of stuff on the exam table paper - which is something I like to do (shout out to Dr. JC Cowden who taught me this valuable method of communication). And he wore a sweater-vest.
As I have walked down my long path to become a physician, I have always worked hard on my communication with families and patients. Just providing medical facts and medication prescriptions is not as satisfying as cultivating a relationship with a patient for me. And, more than a family just "liking" me, I need to know that we are exchanging information in a productive way. Sometimes this is hard work because we all come to the table with different styles and different goals. Needless to say, I am thrilled that I have found an oncologist who will help to guide this crazy journey I am on. And to all my doctor friends - all those times you sat a few minutes longer than you wanted to or explained things a 3rd time just for good measure - it really did matter, even if the patient didn't jump off the exam table and hug you (I'm saving that for my last clinic visit...)
So what did this wise sweater vest wearing man have to say? Nothing that different. 2 months of ABVD chemo - then repeat the PET scan. If PET scan is negative (no tumors, absolutely none) then I will have 3 weeks of radiation and be done. (really?!?) If the PET scan is positive (even a tiny spot - which he pointed out could just be from residual inflammation) then I do 2 more months of chemo - then repeat the PET scan again. If necessary, repeat once more, but he thinks 2-4 months of chemo and a little radiation should take care of this thing. He is very proactive about his patients not throwing up (I am a huge fan of this idea) - resulting in prescriptions for 4 anti-nausea medications to take the first few days after chemo. I have a pill sorter - my mother is proud.
This brings us to today - Day 1. Chemotherapy. Holy shit....this is really happening?
John took me ( he was post call, bless his self sacrificing little heart). We got all checked in, re-measured (I have been measured 5 times in the last week - 5'3" every single time...) and offered a drink nine thousand times - they love to offer drinks there. The nurses accessed my port for the first time which hurt just for a second or two. I kept asking the nurse if the port was working OK (yes, yes, yes!) because I have a huge amount of unfounded doubt about this little device implanted in my chest. If I spend to much time thinking about a tube or medicine going to my heart, I admit I feela little really grossed out. I may have asked John if he has ever heard of someone's "vein exploding" from one of these - insert incredulous look from john. This is one of the many reasons that I am not a surgeon or a cardiologist. Next comes blood counts (all good). Then more anti-nausea medications through the IV. Then begins a 4 hour parade of the 4 different chemo medications that all run individually and each on a different time interval. Before each medication I have to re-verify my name and date of birth - which seems super safe, but a little over the top. Things went slowly but smoothly, best case scenario for first chemo, I think.
Since coming home I have been tired and a little achy- kind of like right before you figure out you have the flu. Very little nausea and NO vomiting! It sounds like the next few days could be rough, but I plan to stay on my medicine schedule and hope for the best.
Thank you for all of your emails, text, messages, facebook love, calls, books, flowers, cards, banana bread (cara hoffart is my idol), and positive thoughts/energy/prayers. Everyone has been so very nice.
As I have walked down my long path to become a physician, I have always worked hard on my communication with families and patients. Just providing medical facts and medication prescriptions is not as satisfying as cultivating a relationship with a patient for me. And, more than a family just "liking" me, I need to know that we are exchanging information in a productive way. Sometimes this is hard work because we all come to the table with different styles and different goals. Needless to say, I am thrilled that I have found an oncologist who will help to guide this crazy journey I am on. And to all my doctor friends - all those times you sat a few minutes longer than you wanted to or explained things a 3rd time just for good measure - it really did matter, even if the patient didn't jump off the exam table and hug you (I'm saving that for my last clinic visit...)
So what did this wise sweater vest wearing man have to say? Nothing that different. 2 months of ABVD chemo - then repeat the PET scan. If PET scan is negative (no tumors, absolutely none) then I will have 3 weeks of radiation and be done. (really?!?) If the PET scan is positive (even a tiny spot - which he pointed out could just be from residual inflammation) then I do 2 more months of chemo - then repeat the PET scan again. If necessary, repeat once more, but he thinks 2-4 months of chemo and a little radiation should take care of this thing. He is very proactive about his patients not throwing up (I am a huge fan of this idea) - resulting in prescriptions for 4 anti-nausea medications to take the first few days after chemo. I have a pill sorter - my mother is proud.
This brings us to today - Day 1. Chemotherapy. Holy shit....this is really happening?
John took me ( he was post call, bless his self sacrificing little heart). We got all checked in, re-measured (I have been measured 5 times in the last week - 5'3" every single time...) and offered a drink nine thousand times - they love to offer drinks there. The nurses accessed my port for the first time which hurt just for a second or two. I kept asking the nurse if the port was working OK (yes, yes, yes!) because I have a huge amount of unfounded doubt about this little device implanted in my chest. If I spend to much time thinking about a tube or medicine going to my heart, I admit I feel
Since coming home I have been tired and a little achy- kind of like right before you figure out you have the flu. Very little nausea and NO vomiting! It sounds like the next few days could be rough, but I plan to stay on my medicine schedule and hope for the best.
Thank you for all of your emails, text, messages, facebook love, calls, books, flowers, cards, banana bread (cara hoffart is my idol), and positive thoughts/energy/prayers. Everyone has been so very nice.
Sunday, February 24, 2013
port
A week ago, if you asked me to use the word port in a sentence, it would have been something like "Yes, i would like some port with my creme brûlée".
But the times, they are a changing. On Friday, I had my port placed. The procedure itself went smoothly - it did take 2 tries to get an IV, which I think is probably standard protocol for people about to get ports so it makes the port seem more important and you actually sign the consent form. Then I took a quick break from reality with some fentanyl and versed. Half an hour later, when I tuned back in, the procedure was done and it was time to go home. I made John drive us to Blanc burger so I could eat a cheeseburger.
Recovery from the port placement has been slower and more painful that I had hoped for - but I am starting to feel better today. Lots of sore muscles in my neck and chest - but not needing anything more than Aleve now for my discomfort.
I will use the port for the first time this Thursday for my first round of chemo. I will have chemo every 2 weeks with doctor visits weekly to check my blood counts. I'm anxious to get started on my chemo so that we can start shrinking this tumor. I am also eager to see how good/bad I feel after chemo so that we know how much help we are going to need around the house. Everyone has been so generous with offers to help and support the family during this time. Thank you.
Today we had family pictures taken. If you have ever thought to yourself "the only thing more fun than family portraits is having all of my teeth pulled" then you and John think a lot alike. Nevertheless, I wanted to have pictures taken before I started to look "sick". Everyone was a good sport. Hudson was complaining about his outfit and I overheard John saying "this is just part of having having your mommy for a mommy, sometimes we are going to have to wear things we don't like". Love it! :) Finn melted down about half way through - so fingers crossed we got some good pictures. And if we all look really, really happy and perfect - you will know the secret back story...
Enjoy the sun and snow today!
But the times, they are a changing. On Friday, I had my port placed. The procedure itself went smoothly - it did take 2 tries to get an IV, which I think is probably standard protocol for people about to get ports so it makes the port seem more important and you actually sign the consent form. Then I took a quick break from reality with some fentanyl and versed. Half an hour later, when I tuned back in, the procedure was done and it was time to go home. I made John drive us to Blanc burger so I could eat a cheeseburger.
Recovery from the port placement has been slower and more painful that I had hoped for - but I am starting to feel better today. Lots of sore muscles in my neck and chest - but not needing anything more than Aleve now for my discomfort.
I will use the port for the first time this Thursday for my first round of chemo. I will have chemo every 2 weeks with doctor visits weekly to check my blood counts. I'm anxious to get started on my chemo so that we can start shrinking this tumor. I am also eager to see how good/bad I feel after chemo so that we know how much help we are going to need around the house. Everyone has been so generous with offers to help and support the family during this time. Thank you.
Today we had family pictures taken. If you have ever thought to yourself "the only thing more fun than family portraits is having all of my teeth pulled" then you and John think a lot alike. Nevertheless, I wanted to have pictures taken before I started to look "sick". Everyone was a good sport. Hudson was complaining about his outfit and I overheard John saying "this is just part of having having your mommy for a mommy, sometimes we are going to have to wear things we don't like". Love it! :) Finn melted down about half way through - so fingers crossed we got some good pictures. And if we all look really, really happy and perfect - you will know the secret back story...
Enjoy the sun and snow today!
Thursday, February 21, 2013
oncology part 2
Another day, another exciting list of tests and doctor visits. Today I had my PET scan and received more good news - the only spots that show active disease are my chest mass and the place in my neck where the lymph node was located. While my bone marrow results are still pending, my oncologist feels like I most likely have stage 2a Hodgkin's. This means that I will hopefully be able to have a shorter than "normal" course of chemo and possibly less radiation. There is a big push for oncologists to limit treatment to what is necessary in young (that's me!) women - so that I don't increase my risk for other health problems (breast cancer, heart disease) later on as a result of the original treatment.
I will have my port placed tomorrow and I am not looking forward to that. More than dealing with the pain, I have a hard time giving up control in the hospital. I am used to being "in charge" in clinic and the OR, so it is hard for me to just let go and put my trust in others for a change. But, I have no choice - I am now the patient - and all I can do is hope that everyone is paying attention and doing their best every single day. Already, I know I will walk away from this experience with a deeper respect for my patients and the burdens that they carry. That two lab draws in one day can be a big deal, and that "routine" procedures can still scare the bejesus out of some people...
We made plans to start chemotherapy next week. I will get 4 different chemotherapeutics every 14 days for 2 months (ABVD protocol). Then we will repeat the PET scan and hope that my chest mass has disappeared - if that is the case, then I fall into the lower dose treatment group. 70-80% chance....only time will tell.
I will have my port placed tomorrow and I am not looking forward to that. More than dealing with the pain, I have a hard time giving up control in the hospital. I am used to being "in charge" in clinic and the OR, so it is hard for me to just let go and put my trust in others for a change. But, I have no choice - I am now the patient - and all I can do is hope that everyone is paying attention and doing their best every single day. Already, I know I will walk away from this experience with a deeper respect for my patients and the burdens that they carry. That two lab draws in one day can be a big deal, and that "routine" procedures can still scare the bejesus out of some people...
We made plans to start chemotherapy next week. I will get 4 different chemotherapeutics every 14 days for 2 months (ABVD protocol). Then we will repeat the PET scan and hope that my chest mass has disappeared - if that is the case, then I fall into the lower dose treatment group. 70-80% chance....only time will tell.
Wednesday, February 20, 2013
I have Hodgkin's Lymphoma.....YAY!!
Today I got the news we have been hoping for - the pathology from my lymph node looks like Hodgkin's Lymphoma. This is the best case scenario, as Hodgkin's is very treatable. I was literally dancing around my office today when I got the news. Its amazing how quickly your perspective can change! We are just thrilled. I know I can do this- its just a matter of getting through the treatment. To determine the best course, I am having several more test this week and a meeting with the oncology team tomorrow afternoon to make a plan. I am having a port-a-cath placed on Friday - so should be able to start chemo in about a week.
Today I had a bone marrow biopsy. To be brief and not overly dramatic, it was not fun. If I never hear another person say "I'm just tapping my needle on your bone" again - it will be fine with me. John was there to hold my hand - and he took me out for ice cream after - so it all turned out ok.
My parents are here to help with the kids and the house for the next few days of testing and recovery from my port placement. I about lost my mind when I was told that I wouldn't be able to life anything for 7-10 days after my port is placed. It will be hard to resist Finn's newest phrase "up, pease?" but with a couple of extra hands in the house, he will be well snuggled and loved.
Today I had a bone marrow biopsy. To be brief and not overly dramatic, it was not fun. If I never hear another person say "I'm just tapping my needle on your bone" again - it will be fine with me. John was there to hold my hand - and he took me out for ice cream after - so it all turned out ok.
My parents are here to help with the kids and the house for the next few days of testing and recovery from my port placement. I about lost my mind when I was told that I wouldn't be able to life anything for 7-10 days after my port is placed. It will be hard to resist Finn's newest phrase "up, pease?" but with a couple of extra hands in the house, he will be well snuggled and loved.
Tuesday, February 19, 2013
oncology part 1
We met with one of the oncologists at KU today. Not much to report - still waiting for pathology on the lymph node. I am having a bone marrow biopsy tomorrow and a PET scan to look for cancer in other parts of my body on Thursday. Hopefully that means we will have the diagnosis by Friday.
Thank you to everyone for your kind emails and messages. It means more than you know!
Thank you to everyone for your kind emails and messages. It means more than you know!
Monday, February 18, 2013
The facts, as we know them
The past few days have been some of the scariest, most frustrating days I have experienced. I have talked to many of you about what has been going on- but thought that a blog where I can post updates makes the most sense to keep everyone in the loop. So for those of you who are new, let me catch you up.
I started feeling a lymph node behind my left clavicle about 5 weeks ago. In medical school, we spend time learning that this was the most worrisome location for a lymph node as it frequently signals metastatic cancer or lymphoma. So, like a good doctor, I tried to ignore it. I blamed it on a virus I didn't have. I hoped it would go away. But to no avail, the thing just stayed. So, I saw my internist this week where I had labs (all normal!) and a chest xray (....not normal.) Um....WHAT?
On Friday I had a CT scan of my chest and learned over the weekend 2 things. 1) I have a fairly large mass of lymph nodes in the part of my chest called the anterior mediastium and 2) I am blessed with the most wonderful family and friends. The CT scan findings and my neck lymph node mean almost certainly that I have lymphoma. (insert major crying breakdowns while attending H's basketball game, yoga class, grocery store, bath-time, bed time stories, middle of the night, etc) We do not know for certain yet what type of lymphoma I have, so don't know as much as I would like about treatment and prognosis. Most likely this is Hodgkins lymphoma which is almost always treatable, fingers crossed.
Today I went to KU where a very lovely surgeon removed the lymph node from my neck to send to pathology so we know what I am dealing with. It has helped that I have stitches on my neck to start to broach the subject of my being sick with H. Not sure how much we will share, or when, but he will certainly know. As one of my friends pointed out, F is blessed in this scenario - he will toddle through all of this with a smile on his face and not know enough to worry about his momma. He does like to point out my 'ouch' every few minutes - so we will see!
Tomorrow we meet with the KU oncology team - likely I will need more tests and procedures before we know all that we need to know to make a plan. Pathology is not supposed to be in till the end of the week at the earliest, so we have more waiting to do. I am so ready for a plan - I have never craved information more in my entire life.
Since I heard the news on Saturday from a very kind and gentle doctor who could teach a class (and probably does) on how to break bad news, I have had a sensation of floating just outside of my body. Even as I write this, I still don't feel like it is 100% real. The prospect of becoming a patient in a hospital with a medical record number and "no known drug allergies" is horrifying to me. The fact that all this is happening because I have cancer, is truly too big and bad on an idea to fully process at his time. To those of you who have hugged me, cried with me, cooked for me, talked with me, worried for me, prayed for me and loved me, I am moved more than I can ever express. This is going to be a long journey, and I promise to take every single one of you up on your offers for help - because we are going to need it. Thank you, I am a lucky girl.
I would be remiss to not devote an entire paragraph of this first update to the love of my life, John. In all of the storm of the past few days, he has been my calm shelter. This has always been the way for us, where I am anxious and excitable, he is steady and strong. But now, more than ever I am so grateful that I have him to walk with me down this scary, unknown road. He also made a kick-ass grilled cheese today which was just what my post-anesthesia body needed. So, give John a hug too - and buy the guy a beer - because he is carrying a lot in his heart right now
That's all for now. Will keep you posted.
Julia
PS - sometimes I feel like answering texts and emails, and sometimes I feel like pretending that none of this is real and just playing with the boys. So, if you don't hear back from me right away, please know that it because I get overwhelmed sometimes and need a break from talking about all of this.
I started feeling a lymph node behind my left clavicle about 5 weeks ago. In medical school, we spend time learning that this was the most worrisome location for a lymph node as it frequently signals metastatic cancer or lymphoma. So, like a good doctor, I tried to ignore it. I blamed it on a virus I didn't have. I hoped it would go away. But to no avail, the thing just stayed. So, I saw my internist this week where I had labs (all normal!) and a chest xray (....not normal.) Um....WHAT?
On Friday I had a CT scan of my chest and learned over the weekend 2 things. 1) I have a fairly large mass of lymph nodes in the part of my chest called the anterior mediastium and 2) I am blessed with the most wonderful family and friends. The CT scan findings and my neck lymph node mean almost certainly that I have lymphoma. (insert major crying breakdowns while attending H's basketball game, yoga class, grocery store, bath-time, bed time stories, middle of the night, etc) We do not know for certain yet what type of lymphoma I have, so don't know as much as I would like about treatment and prognosis. Most likely this is Hodgkins lymphoma which is almost always treatable, fingers crossed.
Today I went to KU where a very lovely surgeon removed the lymph node from my neck to send to pathology so we know what I am dealing with. It has helped that I have stitches on my neck to start to broach the subject of my being sick with H. Not sure how much we will share, or when, but he will certainly know. As one of my friends pointed out, F is blessed in this scenario - he will toddle through all of this with a smile on his face and not know enough to worry about his momma. He does like to point out my 'ouch' every few minutes - so we will see!
Tomorrow we meet with the KU oncology team - likely I will need more tests and procedures before we know all that we need to know to make a plan. Pathology is not supposed to be in till the end of the week at the earliest, so we have more waiting to do. I am so ready for a plan - I have never craved information more in my entire life.
Since I heard the news on Saturday from a very kind and gentle doctor who could teach a class (and probably does) on how to break bad news, I have had a sensation of floating just outside of my body. Even as I write this, I still don't feel like it is 100% real. The prospect of becoming a patient in a hospital with a medical record number and "no known drug allergies" is horrifying to me. The fact that all this is happening because I have cancer, is truly too big and bad on an idea to fully process at his time. To those of you who have hugged me, cried with me, cooked for me, talked with me, worried for me, prayed for me and loved me, I am moved more than I can ever express. This is going to be a long journey, and I promise to take every single one of you up on your offers for help - because we are going to need it. Thank you, I am a lucky girl.
I would be remiss to not devote an entire paragraph of this first update to the love of my life, John. In all of the storm of the past few days, he has been my calm shelter. This has always been the way for us, where I am anxious and excitable, he is steady and strong. But now, more than ever I am so grateful that I have him to walk with me down this scary, unknown road. He also made a kick-ass grilled cheese today which was just what my post-anesthesia body needed. So, give John a hug too - and buy the guy a beer - because he is carrying a lot in his heart right now
That's all for now. Will keep you posted.
Julia
PS - sometimes I feel like answering texts and emails, and sometimes I feel like pretending that none of this is real and just playing with the boys. So, if you don't hear back from me right away, please know that it because I get overwhelmed sometimes and need a break from talking about all of this.
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