August 6, 2011
July 28, 2011
My summer on the physical/medical front
I went to see Dr. Rivkin and get my 4th Avastin treatment last Thursday. As usual, the "fast track" program (if you see your doctor right before your appointment, you are guaranteed no wait for your treatment), was not fast- my appointment for 30 minutes of infusion took over 3 hours. I can't imagine how people do this with 9-5p jobs. Dr. Rivkin was running late as usual, but I arrived early enough that we finished in time for chemo. But I still waited 30 minutes to get in, 20 minutes for the nurse to get the IV in, and over an hour for the pharmacy to get me the drug. WTF? This has been the 2nd time that the nurses have had a really hard time starting an IV. I guess I'm always dehydrated when I go in. Weird because when I am at work I carry my water bottle everywhere and am always drinking out of it. The pharmacy is probably the biggest problem- I mean, what do they do in there? Every time I go to pick up a med they seem to just be leaning on a counter. Does it really take an hour to mix a drug?
Enough ranting, now for what else is going on:
That's it for this long post- I'll post an update on what's going on in the rest of my life soon!
Enough ranting, now for what else is going on:
- I am having bladder problems yet again. Urgency, frequency, some dribbling. It's been pretty annoying, but inconsistent. This has been going on for over a month, yet Dr. Rivkin can't find anything wrong. I has told him about it and that's why he rushed to order my PET scan. He kept joking about how I was getting older and needed diapers and this really pissed me off. I am 30 and should not be having bladder problems. Especially since this was one of the symptoms of my cancer. But the PET SCAN SHOWED NO EVIDENCE OF TUMOR, which was a relief. He then ordered a culture of my urine to see if I had an infection, but that was negative. So as of now, he says that my symptoms may be a result of damage and fibrosis from radiation. I am still skeptical because I thought that this area was irradiated as much as everything else. Plus I thought that these changes would occur much later, rather than after only 2 years. But he explained that symptoms can occur anytime following treatment. I already have constipation most days, which I never had problems with before. Anyways, he brushed the issue off as no big deal, which was frustrating. So my next plan is to talk to my primary care doctor and get a referral to a urologist, because I think that's the proper route for my insurance to pay for it. It's cancer-related though, so I don't know why Swedish can't handle it. Another insurance issue, go figure
- Avastin side-effects.
- My urinalysis showed a small amount (1+) proteinurea, or protein in my urine. Doc said that I was dehydrated and needed to drink more water. He will continue to monitor it with pre-treatment pee tests, but presently it is low-grade and may be resolved with hydration. Here is what the Avastin website says about proteinurea:
- Proteinuria/nephrotic syndrome (Warnings and Precautions)
- The incidence and severity of proteinuria are increased in patients receiving Avastin compared to controls
- Grade 3 and 4 proteinuria ranged from 0.7% to 7.4% across clinical trials
- The overall incidence of proteinuria (all grades) was only adequately assessed in AVOREN, in which the incidence was 20%
- In AVOREN, median onset of proteinuria was 5.6 months (range 15 days to 37 months) and median time to resolution was 6.1 months (95% CI, 2.8 months–11.3 months). Proteinuria did not resolve in 40% of patients after median follow-up of 11.2 months and required permanent discontinuation of Avastin in 30% of the patients who developed proteinuria
- Nephrotic syndrome occurred in <1% of patients receiving Avastin in clinical trials, in some instances with fatal outcome
- In a published case series, kidney biopsy of 6 patients with proteinuria showed findings consistent with thrombotic microangiopathy
- Monitor proteinuria by dipstick urine analysis for the development or worsening of proteinuria with serial urinalyses during Avastin therapy. Patients with 2+ or greater urine dipstick reading should undergo further assessment, eg, a 24-hour urine collection
- Suspend Avastin administration for ≥2 grams of proteinuria/24 hours and resume when proteinuria is <2 g/24 hours
- Discontinue Avastin in patients with nephrotic syndrome. The safety of continued Avastin treatment in patients with moderate to severe proteinuria is unknown
- Hypertension: My blood pressure readings are pretty inconsistent. At my appointment I had a reading of 139/78- my highest yet. Yet, before my infusion it was back down to 110/68. I've never experienced "white coat" syndrome- where readings are higher than normal when patients are in the exam room. I'm going to dig out my blood pressure cuff and start taking it myself.
- Slow healing: This month I went camping 3 weekends in a row and developed "camping feet" (or dirty hippy feet) from going barefoot, hiking, mosquito bites, and just being around scratchy plants and rocks. I now have a lot of lovely cuts, bruises and callouses on most of my lower extremities (Mark you would run from me if you saw them). Anyways, I had a really really itchy mosquito bite on my ankle, which my big toe scratched raw while I was sleeping. This spot became an ugly blue-purple-red splotchy ulcer (yet painless) which is still healing. It's the kind of cut you would expect from a patient with diabetes or arterial insufficiency (lack of blood flow to bring healing white blood cells and oxygen necessary to make new cells- exactly what Avastinbandaid and my little 5 & 6yr old noticed and became obsessed with my boo-boo. Every one of my other cuts are also healing pretty slowly, so I have awesomely hideous camping feet.
- Vision: I've had no more problems from the Tamoxifen. Only those two incidences of blurriness months ago. BUT, after developing a lingering summer cold with 2 weeks of laryngitis, I also had conjunctivitis (pink-eye). I have a couple days of antibiotics (prescribed myself) left and then I can take off my awful glasses and wear contacts again
- Sweet tooth: It's back, but now I believe it's completely unrelated. I read dozens of posts from other survivors with taste changes after chemotherapy. Tons of people who went from salt to sweet like myself. They never tell you these things in the clinic- thank god for the Internet and great network of survivor blogs! Unfortunately my teeth are taking a toll (see previous article), and I am planning on visiting an urgent care dental clinic in the next few days to get a filling for a previous cavity and relieve a toothache :(
That's it for this long post- I'll post an update on what's going on in the rest of my life soon!
July 15, 2011
June 18, 2011
June 17, 2011
PET, Dr. Appointment and 2nd Avastin Tx
I had another PET scan today- the second sunny Friday that I spent in the clinic. It took about 2 hours and was fine except yet again I was extremely hungry. I was actually bad this time and had two Chex squares in the car on the way there. And then I licked the salt off some more :) When I got to the clinic I started to get really worried that I screwed up the test, which would be really unfortunately considering I fasted 12 hrs for 2 damn pieces of Chex Mix (but very satisfying). They check your blood sugar before injecting the solution and fortunately I was fine. I then sat in the office room with the lights out and instructions to relax and NOT use my cell phone. I was able to listen to a little Pandora though- (FYI Ratatat Radio has some good pre-PET tunes). After that I went through the scanner for about 30 minutes with my arms raised above my head. My arms fell asleep and of course everything on my face started getting extremely itchy. Frustrating...
After that I got home and ate tons of carbs and sugar. One day of PET prep is hell. We had a staff meeting with pizza and I couldn't eat the crust. I sat and listened and secretly picked off all the cheese and ate it with no one noticing.
Last Friday (sunny day #1), I had my second Avastin treatment and an appointment with Dr. Rivkin. Yet again I was reminded of his awesomeness. When I walked in the first thing he asked me was about my job search. I told him that I still had no luck and that I was worried about losing my knowledge. I also mentioned that I was looking to shadow a doctor or another NP. As I was finishing that sentence he got on the phone and starting calling some NP colleagues! He tracked down one NP who worked in oncology who would be willing to let me shadow. I also get to shadow the NP in his clinic once a week! I still have to finalize details, but I'm really excited! I would absolutely love to work in oncology, and I think I would be pretty good at it :)
As far as the rest of the appointment, I gave him my "list of questions" and he went answered each one in order. ( I recommend that every patient with a chronic illness keep a list- it ensures that you get all of your questions answered, helps the provider, and improves the efficiency and flow of the appointment.)
1.) Blurry vision: He said that my dose of Tamoxifen was pretty low to have this symptom, but he agreed with my to make an appointment with an opthalmologist to get a baseline. Unfortunately I have to go through my primary care provider who I haven't seen in over a year. I now made an appointment to see her next week
2.) Avastin first treatment: I told him it went fine- no side effects. I mentioned how my blood pressure had gone up on too occasions, but when the nurse checked it in the office it was back to its low value. No worries there
3.) CT Scan: Normal. Nothing at all. However, I was due for the PET since it had been over 3 months. I couldn't schedule it at the time because of the lengthy approval process. Getting it within 1 week was surprising because it usually takes around 3. Even though I have financial assistance through Swedish, everything still has to go through my insurance company. However they approved it again :)
4.) Avastin treatments: Scheduled for every 3 weeks. Now they should only be a 30 second infusion, although it always takes an extra hour. Good thing I don't have a day job! I don't know what is going on in the pharmacy but they seem to be the cause of the wait. Maybe it actually takes 30 minutes to mix Avastin?
5.) Weight. 121. I guess I'll be wearing a lot of skirts, because that's the only clothing that seems to fit the best. Unfortunately I live in Seattle and it's Junuary so I'm gonna be cold. But I guess other clothes don't matter that much, considering I wear athletic pants and the same T-shirt 4 times a week.
That's all for now- tomorrow I'm getting up at 7am to strip down to my birthday suit, paint myself, and parade the streets of Fremont (which is conveniently my new neighborhood). Yes, it's time to celebrate the Summer Solstice again! And the weather forecast: 62 deg with a 50% chance of rain. I think I may warm up with a few mimosas before I start the ride :)
After that I got home and ate tons of carbs and sugar. One day of PET prep is hell. We had a staff meeting with pizza and I couldn't eat the crust. I sat and listened and secretly picked off all the cheese and ate it with no one noticing.
Last Friday (sunny day #1), I had my second Avastin treatment and an appointment with Dr. Rivkin. Yet again I was reminded of his awesomeness. When I walked in the first thing he asked me was about my job search. I told him that I still had no luck and that I was worried about losing my knowledge. I also mentioned that I was looking to shadow a doctor or another NP. As I was finishing that sentence he got on the phone and starting calling some NP colleagues! He tracked down one NP who worked in oncology who would be willing to let me shadow. I also get to shadow the NP in his clinic once a week! I still have to finalize details, but I'm really excited! I would absolutely love to work in oncology, and I think I would be pretty good at it :)
As far as the rest of the appointment, I gave him my "list of questions" and he went answered each one in order. ( I recommend that every patient with a chronic illness keep a list- it ensures that you get all of your questions answered, helps the provider, and improves the efficiency and flow of the appointment.)
1.) Blurry vision: He said that my dose of Tamoxifen was pretty low to have this symptom, but he agreed with my to make an appointment with an opthalmologist to get a baseline. Unfortunately I have to go through my primary care provider who I haven't seen in over a year. I now made an appointment to see her next week
2.) Avastin first treatment: I told him it went fine- no side effects. I mentioned how my blood pressure had gone up on too occasions, but when the nurse checked it in the office it was back to its low value. No worries there
3.) CT Scan: Normal. Nothing at all. However, I was due for the PET since it had been over 3 months. I couldn't schedule it at the time because of the lengthy approval process. Getting it within 1 week was surprising because it usually takes around 3. Even though I have financial assistance through Swedish, everything still has to go through my insurance company. However they approved it again :)
4.) Avastin treatments: Scheduled for every 3 weeks. Now they should only be a 30 second infusion, although it always takes an extra hour. Good thing I don't have a day job! I don't know what is going on in the pharmacy but they seem to be the cause of the wait. Maybe it actually takes 30 minutes to mix Avastin?
5.) Weight. 121. I guess I'll be wearing a lot of skirts, because that's the only clothing that seems to fit the best. Unfortunately I live in Seattle and it's Junuary so I'm gonna be cold. But I guess other clothes don't matter that much, considering I wear athletic pants and the same T-shirt 4 times a week.
That's all for now- tomorrow I'm getting up at 7am to strip down to my birthday suit, paint myself, and parade the streets of Fremont (which is conveniently my new neighborhood). Yes, it's time to celebrate the Summer Solstice again! And the weather forecast: 62 deg with a 50% chance of rain. I think I may warm up with a few mimosas before I start the ride :)
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