Thursday, July 25, 2013
GOOD News by Phone
Phone call from my oncologist?! UH oh .... BUT GOOD NEWS! The MRI is definitely clear and although the radiologist has not yet written a PET report, the oncologist says it looks all clear to his eyes: "nothing lighting up, looks completely unremarkable." Oh, UCSF thank you for not making me fret for a week! Oh, new Dr., thanks for a phone call that brings GOOD NEWS! Oh, universe, thanks for my restored health. Oh, family and friends, THANKS FOR YOUR SUPPORT! I LOVE GOOD NEWS!!! Time to celebrate at the DMV :)
Scanning By The Bay
Thursday - July 25, 2013
Yesterday was my first set of scans at UCSF and an opportunity to drive across the city. The UCSF imaging center is at China Basin next to AT&T Park. I may be jinxing myself here but San Francisco traffic cannot hold a candle to northern Virginia's morass and the I-95 crawl up to NYC. Even when reports announce slow rush hour traffic crossing the Golden Gate, we do move along. Nothing like the American Legion Bridge and the Beltway :) So with that perspective, I flew happily across town: NO back-ups AT ALL at 8 am. NoVA traffic has made the driving world a piece of cake ....
Anyway, the scans themselves were different in many fundamental ways. For example, gowns were required; my metal-free proven-to-be-okay-for MRI street clothes were NOT allowed. Also, the rest time after my PET nuclear injection was not prone in the dark for an hour but sitting in a chair in a waiting room - allowed to read! allowed to move! That being said, given my VCU experience of repeated cautions not to move and create false activity readings, I sat very still reading my "New Yorker" taking care not to clench my hands or tense any muscles. Even the MRI symphony of sounds was altered. "The news" consult is scheduled for next Thursday, August 1. Megan has said that she will try to come with me ... just in case. I am phobic about getting any bad news alone in a consult with the oncologist.
But in the meantime, I am NOT incredibly nervous this time. Am I tempting fate? Or is this calm just a reflection and tacit acknowledgment of my body's return to normal? I CAN say that I am extremely busy and distracted with preparations for school and with continued settling-in-to-dos in the apartment. Joe provided an immediate distraction for me after my scans, meeting me for a delicious lunch at the Ferry Building. I enjoyed a warm and wonderful walk along the Embarcadero before coming home to crash with fatigue; it must be all the contrast dyes as well as that useful nuclear tracer that cause me to have such an energy dip after scans. Today brings more distractions from worries about "the news" as Joe has the day off and we are having a big date ... at the DMV :)
Yesterday was my first set of scans at UCSF and an opportunity to drive across the city. The UCSF imaging center is at China Basin next to AT&T Park. I may be jinxing myself here but San Francisco traffic cannot hold a candle to northern Virginia's morass and the I-95 crawl up to NYC. Even when reports announce slow rush hour traffic crossing the Golden Gate, we do move along. Nothing like the American Legion Bridge and the Beltway :) So with that perspective, I flew happily across town: NO back-ups AT ALL at 8 am. NoVA traffic has made the driving world a piece of cake ....
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| Worlds collide in San Francisco :) Such a happy jolt to see the crest! |
But in the meantime, I am NOT incredibly nervous this time. Am I tempting fate? Or is this calm just a reflection and tacit acknowledgment of my body's return to normal? I CAN say that I am extremely busy and distracted with preparations for school and with continued settling-in-to-dos in the apartment. Joe provided an immediate distraction for me after my scans, meeting me for a delicious lunch at the Ferry Building. I enjoyed a warm and wonderful walk along the Embarcadero before coming home to crash with fatigue; it must be all the contrast dyes as well as that useful nuclear tracer that cause me to have such an energy dip after scans. Today brings more distractions from worries about "the news" as Joe has the day off and we are having a big date ... at the DMV :)
Tuesday, July 23, 2013
A Phenomenal Long Weekend
Monday - July 22, 2013
Combine Carolyn and Megan for a cheery joint birthday celebration. Add in the pleasure of Chris' company. Mix with many fine meals including Joe's introduction of a favorite North Beach pizzeria and Megan's hosting us at a familiar favorite in Davis. Flavor with multiple walks around Sausalito, Fort Baker, San Francisco, and Angel Island. Spice up the long weekend with many laughs about the unusual-for-us July weather, our success in figuring out the apartment's heating system, our triumph in jerry-rigging the dogs' access to the front yard, and Sadie's stealthy counter-cruising, food stealing and burying exploits. What do you get? Normalcy. Happiness. Diversion. It's been a fantastic long weekend :)
Sunday, July 14, 2013
Dodging a Bullet?
Saturday - July 13, 2013
Usually, I am very quick to post an update following a visit with an oncologist; sometimes I update from the clinic waiting to check out. But obviously this time I have delayed 2 full days. Why? It was a smooth, professional, pleasant, and all-good-news consultation. For example, my next MRI and PET are already scheduled for July 24 with a follow-up for "the news" on August 1st. In addition, I had team care, meeting with both an oncology fellow and my new oncologist and hearing that they had input on my scans and records from another more senior lymphoma specialist (I do love being cared for at a teaching / research hospital). My vomiting episodes did not raise alarm nor did they trigger a clear to-be-expected-after-chemo response; my abdomen is scanned during my PETs and they rechecked my May scan and confirmed nothing of concern was evident. AND the team fully agreed with both my R-Hyper-CVAD protocol, the additional rounds of methotrexate, as well as Dr. Ambinder's "sit tight" decision to NOT proceed with a Bone Marrow Transplant.
And there - right there at the end of the last paragraph - is the source of my delay in posting. I am mulling over, digesting, contemplating, the oncologist's strong affirmation that I should NOT have gotten a Bone Marrow Transplant. He stated - quite firmly - that Hopkins, UCSF, and other (what was the adjective that he used? top? elite? ) cancer centers are NOT advising Bone Marrow Transplants after achieving complete response from Stage 4 DLBC lymphoma. If I relapse then have successful salvage therapy that results in another complete response THEN a BMT would be warranted but NOT after a first remission.
Joe said that I "dodged a bullet." A potentially fatal bullet. I am - once again - tremendously grateful, tremendously relieved, and a little bit breathless from dodging that BMT bullet. What if a donor had been available off the BMT registry? What if I had matched? Aside from the lethal dangers of cancer, the mortality rate from an allo BMT procedure is 1 in 4. Yup, 25% from the BMT itself. And then of course there is the graft versus host issue and the possible failure to graft and subsequent loss of immunity. Bullet dodged. Phew. Bad luck can be good luck, I suppose :)
Usually, I am very quick to post an update following a visit with an oncologist; sometimes I update from the clinic waiting to check out. But obviously this time I have delayed 2 full days. Why? It was a smooth, professional, pleasant, and all-good-news consultation. For example, my next MRI and PET are already scheduled for July 24 with a follow-up for "the news" on August 1st. In addition, I had team care, meeting with both an oncology fellow and my new oncologist and hearing that they had input on my scans and records from another more senior lymphoma specialist (I do love being cared for at a teaching / research hospital). My vomiting episodes did not raise alarm nor did they trigger a clear to-be-expected-after-chemo response; my abdomen is scanned during my PETs and they rechecked my May scan and confirmed nothing of concern was evident. AND the team fully agreed with both my R-Hyper-CVAD protocol, the additional rounds of methotrexate, as well as Dr. Ambinder's "sit tight" decision to NOT proceed with a Bone Marrow Transplant.And there - right there at the end of the last paragraph - is the source of my delay in posting. I am mulling over, digesting, contemplating, the oncologist's strong affirmation that I should NOT have gotten a Bone Marrow Transplant. He stated - quite firmly - that Hopkins, UCSF, and other (what was the adjective that he used? top? elite? ) cancer centers are NOT advising Bone Marrow Transplants after achieving complete response from Stage 4 DLBC lymphoma. If I relapse then have successful salvage therapy that results in another complete response THEN a BMT would be warranted but NOT after a first remission.
Joe said that I "dodged a bullet." A potentially fatal bullet. I am - once again - tremendously grateful, tremendously relieved, and a little bit breathless from dodging that BMT bullet. What if a donor had been available off the BMT registry? What if I had matched? Aside from the lethal dangers of cancer, the mortality rate from an allo BMT procedure is 1 in 4. Yup, 25% from the BMT itself. And then of course there is the graft versus host issue and the possible failure to graft and subsequent loss of immunity. Bullet dodged. Phew. Bad luck can be good luck, I suppose :)
Wednesday, July 10, 2013
Settling Into Our Perch on the Hill
Wednesday - July 10, 2013
Today we celebrated many move-in milestones:
Happily, all of the furniture fits into our much tighter quarters, the "stuff" all has a home, and the closets are sufficient. In fact, we have room to spare (phew!) particularly in the kitchen (which is officially the best we've ever enjoyed). Driving up (and down!) the hill is becoming more routine, the dogs are somewhat less freaked out by the wind every day, and slowly but surely we are arranging all of our unboxed belongings. Joe started at work this week and has commuted successfully by ferry, bike, and bus. He is supremely content. Life is GOOD!
This week, I have been thrilled to begin settling into school. It truly is a fabulous environment with lovely, welcoming staff and an expansive, well-appointed classroom. A splendid fit. I am so happy to set down professional roots and to get prepped for students in a few short weeks.
Of course, hovering in the background (or "lurking" as lymphoma was first introduced to us in April 2012) is the nagging ever-present worry that somehow I am tempting fate with every box unpacked, taunting cancer with every instance when I forget my past illness. My head knows I am well but my gut will no longer trust my head. Tomorrow I visit UCSF for my first meeting with my new oncologist. It feels a bit like a blind date so of course I will dress up (for me that's a low bar) and carry my "big girl purse." The goal is to schedule my next series of scans and subsequent results consultation for mid-August.
I also need to discuss 5 incidents of middle of the night vomiting since March. No nausea at all - just awaking, knowing it's coming, waiting about an hour, then emptying my stomach. At first I thought it was an isolated bout of food poisoning but now with 4 incidents in the last month (and some reluctant googling), I think that I might be suffering some lingering effects of my chemo. Needless to say, I am also obsessing about stomach cancer ... but nothing seems to corroborate that fear .... Best to consult with my oncologist .... Tomorrow .... I need some reassurance ....
Lastly, these last few weeks cancer has reared its foul head once again. Megan's close friend from high school continues to battle her scourge-relapsed-lymphoma with salvage chemotherapy in preparation for a Bone Marrow Transplant. Carolyn's dear friend has finished her chemotherapy only to now be suffering through her radiation treatments. Mark has now been gone for 3 months and I hold his parents and family close in prayer as they endure a summer without their 12 year old. And now a dear friend from our early days in DC is enduring treatment for an aggressive form of breast cancer. I am railing at the universe with the injustice of this brutal diagnosis. She is a physician herself who has been vigilant about annual mammograms and self-checks yet the mammograms missed the disease which has apparently been present for years. Wretched disease. Please hold her in your thoughts and prayers. Her boys need her. Her family and friends need her. The world is a better place with her smile, laughter, and gentle heart.
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| Our view: Belvedere and Angel Island |
- The last of our moving boxes was broken down and put in the recycling! HIP...
- All of my classroom materials are now IN my new classroom (after three car trips)! ... HIP...
- Joe and I enjoyed our first meet-at-the-ferry-then-eat-downtown-then climb-the-hill-home dinner! ... HOORAY!!!!
Happily, all of the furniture fits into our much tighter quarters, the "stuff" all has a home, and the closets are sufficient. In fact, we have room to spare (phew!) particularly in the kitchen (which is officially the best we've ever enjoyed). Driving up (and down!) the hill is becoming more routine, the dogs are somewhat less freaked out by the wind every day, and slowly but surely we are arranging all of our unboxed belongings. Joe started at work this week and has commuted successfully by ferry, bike, and bus. He is supremely content. Life is GOOD!
 |
| Another sun spot for Baxter |
This week, I have been thrilled to begin settling into school. It truly is a fabulous environment with lovely, welcoming staff and an expansive, well-appointed classroom. A splendid fit. I am so happy to set down professional roots and to get prepped for students in a few short weeks.
Of course, hovering in the background (or "lurking" as lymphoma was first introduced to us in April 2012) is the nagging ever-present worry that somehow I am tempting fate with every box unpacked, taunting cancer with every instance when I forget my past illness. My head knows I am well but my gut will no longer trust my head. Tomorrow I visit UCSF for my first meeting with my new oncologist. It feels a bit like a blind date so of course I will dress up (for me that's a low bar) and carry my "big girl purse." The goal is to schedule my next series of scans and subsequent results consultation for mid-August.
I also need to discuss 5 incidents of middle of the night vomiting since March. No nausea at all - just awaking, knowing it's coming, waiting about an hour, then emptying my stomach. At first I thought it was an isolated bout of food poisoning but now with 4 incidents in the last month (and some reluctant googling), I think that I might be suffering some lingering effects of my chemo. Needless to say, I am also obsessing about stomach cancer ... but nothing seems to corroborate that fear .... Best to consult with my oncologist .... Tomorrow .... I need some reassurance ....
 |
| Our view north, across to the next ridge |
Tuesday, July 2, 2013
Destination Sausalito: DONE
Monday - July 1, 2013
Voila! WHAT a view! WHAT a breeze! Forget the terrace dining room, I am lobbying - hard! - for an outdoor bed. Seriously. I am. NOW is the opportunity. My childhood "sleeping porch" fantasy may have originated in southern novels but may find its reality in the North Bay. On a terrace overlooking Sausalito and Richardson Bay. In the crisp Pacific air scented with eucalytpus. Outdoor sleeping NEEDS to happen.
But for tonight, our perch on the hill remains completely empty save for the hounds' beds that we have left behind for the evening. Joe and I are bunkered down in a nearby hotel awaiting tomorrow's delivery of our household effects. Given the fact that getting the Jetta up the hill is a bit of an all-in-first-gear-and-pray-for-our-clutch ordeal, I cannot imagine how they will shuttle up the thousands of pounds of stuff. Thank you USG for underwriting this move. Guaranteed there are more than a few surcharges for this delivery. And it is worth every penny. This apartment is a gift!
Last night's stay in Davis was HOT but restful. Megan and Chris toured us around their lovely downtown, we dined al fresco on Mexican with the hounds at our feet, and then treated ourselves to some Yoloberry froyo. Jonathan is keeping us up to date with phone updates and ephemeral Snapchats so we don't feel horribly far away. All was well on this particular summer evening with the reassuring promise that many more such relaxed evenings await us.
Today, we breakfasted with Megan before hitting the road and then - for a last happy highlight before our moving odyssey recommences - we drove by San Domenico to see my new work home. Sigh. Life is very very good.
Voila! WHAT a view! WHAT a breeze! Forget the terrace dining room, I am lobbying - hard! - for an outdoor bed. Seriously. I am. NOW is the opportunity. My childhood "sleeping porch" fantasy may have originated in southern novels but may find its reality in the North Bay. On a terrace overlooking Sausalito and Richardson Bay. In the crisp Pacific air scented with eucalytpus. Outdoor sleeping NEEDS to happen.
But for tonight, our perch on the hill remains completely empty save for the hounds' beds that we have left behind for the evening. Joe and I are bunkered down in a nearby hotel awaiting tomorrow's delivery of our household effects. Given the fact that getting the Jetta up the hill is a bit of an all-in-first-gear-and-pray-for-our-clutch ordeal, I cannot imagine how they will shuttle up the thousands of pounds of stuff. Thank you USG for underwriting this move. Guaranteed there are more than a few surcharges for this delivery. And it is worth every penny. This apartment is a gift!
Today, we breakfasted with Megan before hitting the road and then - for a last happy highlight before our moving odyssey recommences - we drove by San Domenico to see my new work home. Sigh. Life is very very good.
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