Seems we've been here before. Yesterday John had his new picc line re-installed for subsequent chemo and blood tests. Michelle, his picc nurse, did a FABULOUS job. He said he didn't even know when she started and was amazed when she announced she was done. I was there, in surgical mask, as a witness to the entire smooth procedure. (I now know the difference between a vein and an artery on camera. One "winks," the other doesn't.)
As I type this update John's in the oncology infusion department finishing up his first chemo session. It was like Old Home Week, coming back to see familiar faces from a few months ago. Faces you're happy to see...somewhere else -- like the grocery store. I can't say enough, though, about the kindness and caring each staff member gives patients AND their families.
After this appointment, we head over to the cancer center for John's first radiotherapy treatment. These will occur bright and early every morning, Monday through Friday, for the next six weeks. Oh happy day! I'm such a morning person...NOT. But if, through all of this, John's cancer heads for "Remission Hills" it will all be worthwhile.
Girlfriend Shannon (my girlfriend, not John's) was up for the weekend. Since we are enjoying a summer of non-summer-weather, we started yet another jigsaw puzzle. Shannon is a rock star at putting them together but kindly left a few pieces for John and I to do before she had to go home. I will try to post a photo of one of our puzzles, along with a more current picture of John, on the blog.
Speaking of pictures of John, he was featured in a full-page ad in The Bellingham Herald yesterday as the wine specialist at Haggen's Ferndale store. Also pictured were the four other Bellingham-area specialists...but John's the best-looking one. (Oh gosh, I hope the others aren't reading this!)
And so we continue the journey. Thank you for coming along for the ride...Like American Express, we don't leave home without you. As always, my gratitude to you all...Nancy
Wednesday, July 20, 2011
Wednesday, July 13, 2011
Putting Together a Plan
It's been a while since I've last touched base with you all which, I guess, is a good thing. There's been nothing much to report as John has continued his recovery from surgery. He went back to work full time right after the fourth of July and is happy to be back amongst his fellow oenophiles (fancy word for "wine geeks).
Last Tuesday, July 5, was our appointment with John's oncologist Dr. Nestor. And yesterday we met with radiotherapist, Dr. Taylor. John was "remapped" for accurate radiation targeting and a new mold was made of his body. He has lost about 35 lbs. and his previous mold was no longer accurate. (He's gone down a size-plus in pants. His old jeans are looking a bit like "Bozo pants." We did get him some new ones so he doesn't look like a walking advertisement for Depends.) Dr. Taylor wants John to have a CT scan due to the radical change in his esophageal/stomach structure. Since radiation is extremely precise, Dr. Taylor wants to make sure that they have the clearest picture possible so that treatment can be accurate to avoid damaging healthy tissue such as lungs, heart and -- of course -- all of his new internal "connections." John's having his CT this afternoon.
Next Tuesday, July 19, John will have a new picc line inserted and chemo/radiation will begin the following day. The plan -- hopefully the last "plan" in this miasma -- is for 6 weeks of chemo/radiation therapy followed by up to 9 weeks of just chemo. Initial chemo treatment will be the same as John had prior to surgery. Because the tumor and lymph nodes that were targeted were destroyed, doctors are using the same approach in the hopes that any remaining undetectable cancer in the chest area -- if there is any -- will respond in the same manner. Post-radiation chemo will be a "systemic" recipe that will target John's entire body (his "system") in an attempt to nuke any unseen cancer cells that may be lurking elsewhere.
So John's personal chef-chauffeur-valet-assistant-nurse (aka wife) will be back on full-time duty. You've heard of soccer moms? Well I'm cancer wife. I think after this year-long "Driving-Miss-Daisy" gig, I should push for a new car; say a sexy little convertible. But I think that will have to wait until we win the Lotto. Truth be told, John's good, steady progress towards beating this disease is enough Lotto for me. And there are perks to this job. The Bellingham Cancer Center has a beautiful new jigsaw puzzle of hydrangeas, roses and pansies waiting for me. And we have a terrific 2000 piece Coca-Cola memorabilia puzzle from friends Mike and Kathy Wright just itching to be put together. I will continue to keep you posted...continue to keep you with us as we walk along...and continue my prayers. I thank you, as always, for yours...Nancy.
Last Tuesday, July 5, was our appointment with John's oncologist Dr. Nestor. And yesterday we met with radiotherapist, Dr. Taylor. John was "remapped" for accurate radiation targeting and a new mold was made of his body. He has lost about 35 lbs. and his previous mold was no longer accurate. (He's gone down a size-plus in pants. His old jeans are looking a bit like "Bozo pants." We did get him some new ones so he doesn't look like a walking advertisement for Depends.) Dr. Taylor wants John to have a CT scan due to the radical change in his esophageal/stomach structure. Since radiation is extremely precise, Dr. Taylor wants to make sure that they have the clearest picture possible so that treatment can be accurate to avoid damaging healthy tissue such as lungs, heart and -- of course -- all of his new internal "connections." John's having his CT this afternoon.
Next Tuesday, July 19, John will have a new picc line inserted and chemo/radiation will begin the following day. The plan -- hopefully the last "plan" in this miasma -- is for 6 weeks of chemo/radiation therapy followed by up to 9 weeks of just chemo. Initial chemo treatment will be the same as John had prior to surgery. Because the tumor and lymph nodes that were targeted were destroyed, doctors are using the same approach in the hopes that any remaining undetectable cancer in the chest area -- if there is any -- will respond in the same manner. Post-radiation chemo will be a "systemic" recipe that will target John's entire body (his "system") in an attempt to nuke any unseen cancer cells that may be lurking elsewhere.
So John's personal chef-chauffeur-valet-assistant-nurse (aka wife) will be back on full-time duty. You've heard of soccer moms? Well I'm cancer wife. I think after this year-long "Driving-Miss-Daisy" gig, I should push for a new car; say a sexy little convertible. But I think that will have to wait until we win the Lotto. Truth be told, John's good, steady progress towards beating this disease is enough Lotto for me. And there are perks to this job. The Bellingham Cancer Center has a beautiful new jigsaw puzzle of hydrangeas, roses and pansies waiting for me. And we have a terrific 2000 piece Coca-Cola memorabilia puzzle from friends Mike and Kathy Wright just itching to be put together. I will continue to keep you posted...continue to keep you with us as we walk along...and continue my prayers. I thank you, as always, for yours...Nancy.
Thursday, June 30, 2011
Quick Visit
Just a quick note to let you know what's going on with John...We saw Dr. Low at VM today, mainly as a consult about the discomfort John had been experiencing with his feeding tube. Long story short, John needs to stay hydrated and continue easing back into a more varied diet. Still small amounts, but he can now include toast (not fresh bread...toast), crackers, fresh fruits and vegetables, and meat. The key is to CHEW CHEW CHEW. And the tube will stay put through chemo/radiation to ensure adequate nutrition should John have a more difficult time this go-around with treatment due to a diminished stomach. His physical discomfort with the tube has pretty much gone away and, hopefully, it will not flare up again.
Next step is an appointment Tuesday with Dr. Nestor, oncologist and the following week with Dr. Taylor, radiologist. I will let you all know when treatment starts and how John handles everything.
We finished the Montmatre Cathedral jigsaw last night, with a little help from Token who was arbitrarily pulling pieces off to assemble a puzzle of his own design on the floor. (Brilliant cat!) We'll disassemble it and take it to the cancer center when we see Dr. Taylor...
Wishing you all a happy 4th of July....Love and thanks as always...Nancy
Next step is an appointment Tuesday with Dr. Nestor, oncologist and the following week with Dr. Taylor, radiologist. I will let you all know when treatment starts and how John handles everything.
We finished the Montmatre Cathedral jigsaw last night, with a little help from Token who was arbitrarily pulling pieces off to assemble a puzzle of his own design on the floor. (Brilliant cat!) We'll disassemble it and take it to the cancer center when we see Dr. Taylor...
Wishing you all a happy 4th of July....Love and thanks as always...Nancy
Monday, June 27, 2011
Latest Update on Future Chemo
I meant to update the blog earlier this weekend. However, I was teaching a 3-day watercolor workshop which took up all my time. (I have to say it was nice to be doing something besides medical stuff! I know John is looking forward to going back to his job and his Haggen "family," his customers and -- of course -- the wonderful world of wine and beer. That will, hopefully, be this coming Thursday.)
Last Thursday we had a consult with Dr. Rosales, oncologist at Virginia Mason, about concerns we both have about John undergoing chemotherapy that includes 5FU. Our questions were answered and we will be forging ahead with chemo in Bellingham as well as with radiation treatment. Initial appointments are for next week and, I expect, treatments will begin shortly thereafter; around the first or second week of July. We've been told that chemo could last as long as two months. Radiation, we don't know.
Some good news is that John has been able to cut back on the amount of "bag-o-meal" he receives via his feed tube; down from five cans to two. His oral intake is gradually increasing, but he continues to eat several small "meals" a day. A bit of a concern is the discomfort he's been experiencing internally in the area of the tube when he eats. So we're checking with Dr. Low (surgeon) to see if perhaps the tube could come out altogether. Always something new and exciting on this journey. You wish you knew what to expect, when to expect it, and when all this crap will go away for good! John's being a trooper with very little bitching, considering the situation. I'm very proud of him and admire his perseverance.
We've been working on a jigsaw puzzle of Montmartre Cathedral in Paris. (Isn't that something old people do? Work on jigsaw puzzles? I guess if the shoe fits...) When this one is finished, we'll donate it to the Bellingham Cancer Center. I hope you will continue to do a puzzle or two a year with your family, even if you're NOT old-folk, and pass it along to your local hospital or cancer treatment center.
Once again, I have to thank you for staying with us and following along. Your friendship and support remain, as always, near to our hearts...Nancy
Last Thursday we had a consult with Dr. Rosales, oncologist at Virginia Mason, about concerns we both have about John undergoing chemotherapy that includes 5FU. Our questions were answered and we will be forging ahead with chemo in Bellingham as well as with radiation treatment. Initial appointments are for next week and, I expect, treatments will begin shortly thereafter; around the first or second week of July. We've been told that chemo could last as long as two months. Radiation, we don't know.
Some good news is that John has been able to cut back on the amount of "bag-o-meal" he receives via his feed tube; down from five cans to two. His oral intake is gradually increasing, but he continues to eat several small "meals" a day. A bit of a concern is the discomfort he's been experiencing internally in the area of the tube when he eats. So we're checking with Dr. Low (surgeon) to see if perhaps the tube could come out altogether. Always something new and exciting on this journey. You wish you knew what to expect, when to expect it, and when all this crap will go away for good! John's being a trooper with very little bitching, considering the situation. I'm very proud of him and admire his perseverance.
We've been working on a jigsaw puzzle of Montmartre Cathedral in Paris. (Isn't that something old people do? Work on jigsaw puzzles? I guess if the shoe fits...) When this one is finished, we'll donate it to the Bellingham Cancer Center. I hope you will continue to do a puzzle or two a year with your family, even if you're NOT old-folk, and pass it along to your local hospital or cancer treatment center.
Once again, I have to thank you for staying with us and following along. Your friendship and support remain, as always, near to our hearts...Nancy
Wednesday, June 15, 2011
Ducks In a Row...
Things are somewhat quiet while John continues to heal from surgery 4+ weeks ago. He's doing well, able to eat "soft" foods that are a step up from previous "custard-consistency" foods. Tonight's dinner was pasta bolognese. He's still limited to one-cup measured meals and he continues to get the bulk of his nutritional requirements via overnight "bag-o-meal" tube feedings. But that is gradually changing.
We have an appointment June 23 with Dr. Joseph Rosales, an oncologist at Virginia Mason who specializes in thoracic and urologic cancer. We want to get a second opinion on how to best approach John's post-surgical chemotherapy. Dr. Nestor, John's Bellingham oncologist, seems to favor a treatment plan that relies heavily on 5FU (the drug that put John in-hospital in February). We'll see if Dr. Rosales might have a better alternative plan.
Dr. Low (surgeon) and Dr. Taylor (radiation) are both in agreement about post-surgical radiation being a good option for John to pursue. While John MAY be cancer-free right now, there is no way to know for sure. Since cancer cells were found in sample lymph nodes taken during surgery, there is a fairly good chance that cancer cells still present.
After our consult with Dr. Rosales next week, we'll hopefully have adequate information to make the very best decision possible for John. He will definitely undergo radiation treatment in Bellingham. Chemo what/where is still up for discussion. I will let you know.
John's hair is growing back; a little grayer than before and with a slight wave. Kinda sexy, actually. It will go away AGAIN with further chemo. (Maybe it will come back blonde a la Robert Redford this time?)
Summer seems to be approaching. I hope you will forgive me for saying that I am looking forward to Christmas and winter, when all of this will be behind us and we can look forward once again. This journey would be much harder if not for your friendship, support and prayers. You are all in my prayers...Nancy
We have an appointment June 23 with Dr. Joseph Rosales, an oncologist at Virginia Mason who specializes in thoracic and urologic cancer. We want to get a second opinion on how to best approach John's post-surgical chemotherapy. Dr. Nestor, John's Bellingham oncologist, seems to favor a treatment plan that relies heavily on 5FU (the drug that put John in-hospital in February). We'll see if Dr. Rosales might have a better alternative plan.
Dr. Low (surgeon) and Dr. Taylor (radiation) are both in agreement about post-surgical radiation being a good option for John to pursue. While John MAY be cancer-free right now, there is no way to know for sure. Since cancer cells were found in sample lymph nodes taken during surgery, there is a fairly good chance that cancer cells still present.
After our consult with Dr. Rosales next week, we'll hopefully have adequate information to make the very best decision possible for John. He will definitely undergo radiation treatment in Bellingham. Chemo what/where is still up for discussion. I will let you know.
John's hair is growing back; a little grayer than before and with a slight wave. Kinda sexy, actually. It will go away AGAIN with further chemo. (Maybe it will come back blonde a la Robert Redford this time?)
Summer seems to be approaching. I hope you will forgive me for saying that I am looking forward to Christmas and winter, when all of this will be behind us and we can look forward once again. This journey would be much harder if not for your friendship, support and prayers. You are all in my prayers...Nancy
Wednesday, June 8, 2011
Radiation Therapy...Maybe Not So Finished
Well after last week's bummer appointment with John's oncologist talking post-surgical chemo statistics, odds, success rates...blah, blah, blah...yesterday's appointment with Dr. Taylor, John's radiologist, shed some optimistic light. Dr. Taylor wants to consult with John's surgeon, Dr. Low at Virginia Mason, about the possibility of doing post-surgical radiation treatment. This would coincide with post-surgical chemo treatments.
The only area treated pre-surgically with radiation was the KNOWN area where the tumor WAS. Nothing was treated above a certain level of John's chest area, the level where Dr. Low took some additional sample lymph nodes during surgery for pathology to review. Those nodes showed live cancer cells.
While post-surgical radiation treatment is not the norm, Dr. Taylor believes there is an excellent chance that, because John's cancer (tumor) area responded so well (it all went away), remaining cancer cells would respond in the same manner. Great news, right?!?!? However -- isn't there always a "however?" -- Dr. Taylor needs to consult with Dr. Low because he wants to avoid damaging the stomach/esophagus connection and other areas that are still healing from surgery. Our next step is to meet tomorrow with Dr. Low and go from there.
So in addition to working on/donating those jigsaw puzzles, holding good thoughts, saying those prayers, and telepathically holding our hands, I'm asking you to cross your fingers. Remember what they say about idle hands...Thanks for keeping yours busy for John. As always, thank you...Nancy.
The only area treated pre-surgically with radiation was the KNOWN area where the tumor WAS. Nothing was treated above a certain level of John's chest area, the level where Dr. Low took some additional sample lymph nodes during surgery for pathology to review. Those nodes showed live cancer cells.
While post-surgical radiation treatment is not the norm, Dr. Taylor believes there is an excellent chance that, because John's cancer (tumor) area responded so well (it all went away), remaining cancer cells would respond in the same manner. Great news, right?!?!? However -- isn't there always a "however?" -- Dr. Taylor needs to consult with Dr. Low because he wants to avoid damaging the stomach/esophagus connection and other areas that are still healing from surgery. Our next step is to meet tomorrow with Dr. Low and go from there.
So in addition to working on/donating those jigsaw puzzles, holding good thoughts, saying those prayers, and telepathically holding our hands, I'm asking you to cross your fingers. Remember what they say about idle hands...Thanks for keeping yours busy for John. As always, thank you...Nancy.
Thursday, June 2, 2011
Home and Next Steps
We're resettled back home, for the most part. Still need to hit the grocery store for some supplies to continue John's "pudding-like-consistency" oral diet as we move toward weaning him off his overnight infusion of "Bag-O-Meal." I'll be making some homemade stocks for a basis of a variety of soup/stews that can be pureed with our handy stick blenders (of which we now own two) and coming up with some creative uses for tofu. John needs other sources of protein besides dairy. Silken tofu can be blended into bisques for the next 10 days or so and should fit the bill. (I'd invite you for dinner but I'm afraid a cuisine that relies on "tofu" might not whet your appetite.) John has lost about 10 lbs. in the past month, really good for an esophagectomy patient. The battle for most patients is in trying to keep weight on. As a side benefit (if there IS any benefit to this crazy, stupid disease), I am now able to again wear shirts that I had "outgrown."
We met with John's oncologist, Dr. Nestor, early this afternoon. John will indeed be undergoing post-surgical chemo treatment, probably beginning in about 4-5 weeks to allow time for his body to continue to heal from the surgery. In today's consult, Dr. Nestor indicated that post-surgical chemo usually relies on the dreaded "5FU," the stuff that gave John "clown lips" and a full body rash back in February. At any rate, here's the skinny on where things stand right now...
There is no "conclusive scientific evidence" that shows post-surgical chemo works. However, because live cancer cells were found in lymph nodes removed from John's chest area -- away from the immediate tumor site -- standard protocol merits further chemotherapy. While we are discouraged by the fact that no one can definitively say, "Yes, this treatment will get rid of the cancer," we are optimistic. In John's case, his age, overall health and the fact that the tumor and immediate-lymph nodes responded well to his initial chemo/radiation therapy bodes well. Statistically speaking, esophageal cancer patients who survive two years post-treatment stand a good chance of having beat the disease. Right now we're in the 15% survival rate. As time goes by, this rate increases...the same as it does for any type of cancer.
We have an appointment with John's radiation doctor, Dr. Taylor, in Bellingham on June 7; and with his surgeon, Dr. Low, on June 9. After that, we again see John's oncologist, Dr. Nestor, the first part of July to get on board the "chemo train" once again.
This path is turning into a very long trek indeed. I will keep this blog going, posting not only updates on John, but any thoughts or inspirations relating to his journey that come along. In the meantime, keep those prayers and good thoughts coming; not only for John, but for all those facing cancer and other frightening, life threatening diseases. Your care and support make a world of difference, even for people you've never met. We are truly ALL in this together...Onward once again...Nancy
We met with John's oncologist, Dr. Nestor, early this afternoon. John will indeed be undergoing post-surgical chemo treatment, probably beginning in about 4-5 weeks to allow time for his body to continue to heal from the surgery. In today's consult, Dr. Nestor indicated that post-surgical chemo usually relies on the dreaded "5FU," the stuff that gave John "clown lips" and a full body rash back in February. At any rate, here's the skinny on where things stand right now...
There is no "conclusive scientific evidence" that shows post-surgical chemo works. However, because live cancer cells were found in lymph nodes removed from John's chest area -- away from the immediate tumor site -- standard protocol merits further chemotherapy. While we are discouraged by the fact that no one can definitively say, "Yes, this treatment will get rid of the cancer," we are optimistic. In John's case, his age, overall health and the fact that the tumor and immediate-lymph nodes responded well to his initial chemo/radiation therapy bodes well. Statistically speaking, esophageal cancer patients who survive two years post-treatment stand a good chance of having beat the disease. Right now we're in the 15% survival rate. As time goes by, this rate increases...the same as it does for any type of cancer.
We have an appointment with John's radiation doctor, Dr. Taylor, in Bellingham on June 7; and with his surgeon, Dr. Low, on June 9. After that, we again see John's oncologist, Dr. Nestor, the first part of July to get on board the "chemo train" once again.
This path is turning into a very long trek indeed. I will keep this blog going, posting not only updates on John, but any thoughts or inspirations relating to his journey that come along. In the meantime, keep those prayers and good thoughts coming; not only for John, but for all those facing cancer and other frightening, life threatening diseases. Your care and support make a world of difference, even for people you've never met. We are truly ALL in this together...Onward once again...Nancy
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